Thursday, December 19, 2019
Heartbreaking news
On Friday, December 13, Kim had the ERCP procedure done at the University of Chicago Medical Center. Sadly, during the procedure Kim experienced a bleed near her brain stem that caused irreparable damage. She remained on life support until her family could arrive - Robin and her family came from Florida, and her brother, Jeff, from Colorado. After heartwrenching goodbyes, Kim was removed from life support and passed peacefully surrounded by loved ones on December 15.. A visitation was held on Tuesday, December 17. Her nieces put together a beautiful video tribute that you can see HERE. On Wednesday, December 18, there was a service followed by an open house at her home. So many friends and family came to say their goodbyes, as she had touched so many lives with her beautiful spirit.
Thursday, December 12, 2019
Heading to the hospital and hoping to return to a normal color soon!
Kim is on her way to the University of Chicago Medical Center where she will be admitted and then undergo a procedure tomorrow called ERCP (endoscopic retrograde cholangiopancreatography). The procedure combines upper gastrointestinal (GI) endoscopy and x-rays to treat problems of the bile and pancreatic ducts. Your bile ducts are tubes that carry bile from your liver to your gallbladder and duodenum. As Kim explained in her last post, her duct is blocked causing bile to build up in her liver. Because of this she is extremely jaundiced. Hopefully they will be able to drain some of the bile during this procedure and decide what to do about her gall bladder. She is hoping that they will choose to remove it rather than insert stents like her brother's doctors did initially. He said they were very painful and did not ultimately solve his problem.
After she has the procedure, she will share results and next steps.
Saturday, December 7, 2019
Hoping for a fresh start
My CBD has not been good to me. In August I went to the skin doctor and found out I had three areas of basil cell cancer rapidly growing and the worst was on my foot. That Mohs incision went from the bottom of my toe all the way to my ankle. I was unable to walk on that foot or wear shoes for several weeks, and had to keep it elevated as they used what little bit of tissue I had remaining on the side of my foot to close the large hole. I was so afraid it would open up but I followed all their instructions, so it didn't.
I saw the eye doctor again and he didn't see any change in my eye even though I told him I see shadows sometimes (when I look straight, it's down to the left). He said it's because when my eye pressure in that area goes down, the shadows turn up. I wish the pressure would stay down because the shadows make me feel existent again, even with the little bit I can see.
I saw the neurosurgeon in October for a routine scan. When he compared them in his office he said there was no change, yet when I read the report online a week later, the radiologist had reported to him the tumor on the left side of my brain doubled in size and has edema (swelling), and my right-side tumor has increased by 50% and has more edema. They also both show more vascular changes, which is not good, because it's the blood vessels that feed the tumors. I also have two cysts that have enlarged as the tumors produce fluid. So, I was a bit worried about that result and called the doctor, and he told me he wasn't too concerned because neurologically I hadn't had enough change that he would open up my head. I mentioned that I get a lot of headaches and he said that's from the tumors and he doesn't want to mask them, but I should let him know if I notice any other signs like falling or balance. My balance sucks already so it's hard to tell if it's worse, unless he means when it's so bad that I tip over. I'll never walk straight because of my vision and hearing problems - together they make you walk crooked.
Next, I went for my routine checkup of my abdomen and pelvis to make sure there is no spread of my cancer, as I'm high risk still from my kidney surgery 2.5 years ago where they believed some cells were left behind. I was lucky enough that the cancer hasn't spread but instead I found out I have a clogged bile duct and enlarged gallbladder and liver. My liver enzymes in all my labs (bilirubin, etc.) are off-the-chart elevated. I hadn't had blood drawn since July so this problem could have been going on for quite a while. But I finally have a reason for all my weight loss (I've lost four more pounds). The symptoms are extreme fatigue, unexplained weight loss, loss of appetite, nausea, yellowing of the skin, itching, muscle aches, and gallbladder pain. I've had all of that.
The itching is making me crazy, I spend 3-5 hours per night itching from head to toe. Nothing helps and I can't sleep, focus, or even watch TV - it's horrible. It comes from my toxic enzyme levels and being jaundiced. This is a worse feeling than the itching problems I've had before.
The reason I have the clogged gallbladder duct is because my abdomen has become filled with cysts that are compressing my stomach and go all the way up to my sternum. There are so many cysts that they have clamped the duct shut.
So, I went to the infectious disease physician on Monday and we repeated the blood work, and since the prior week my labs have even elevated further. This Friday I will be seeing a general surgeon and I'm still waiting to find out what day I'll see the gastroenterologist. I have to discuss it with different people to make sure I'm doing the right thing, and I'm told the doctors can't do anything until my latest bladder infection is gone (I've had two since my last post but it's a different bacteria than I normally get).
My brother Jeff was shocked to hear my scan report. He has had the same issues since April and it's been nothing but problematic. He's been in the hospital 5-6 times and had sepsis and a severe gallbladder attack. They told him with this issue you'll start to produce gallstones, and they found more than 100 in him. Based on his experience, I am going to propose to the doctors that they just remove the gallbladder straight away, and put a stent in down lower. I have to convince them that it's too dangerous to do otherwise. I don't want to repeat what happened to my brother.
They say once you have the surgery or stent done, your levels will go back down and your energy, weight, itchiness, skin tone, etc. will all improve. Unfortunately, I already have liver damage, which apparently is what happens from the levels being so high. But, what really sucks is it'll really mess up my holidays if we can't get it corrected before then. To end my health summary on a positive note, my mammogram was fine. Let's hope my dental appointment next week is fine, too.
Summer went way too fast. It feels like we only got eight weeks this year. Thanksgiving was uneventful - just the three of us and our Boston Market dinner, plus I invited one of my friends to join us as she had no plans, and she and I also went to a movie.
I hired a girl named Chris to help me organize. She's best friends with my cousin Debbie, we get along great, and we are both good purgers so we're getting a lot done. She comes once a week and has been very helpful. We've been working very hard on packing and going through boxes. We had about 20 boxes of stuff on the garage shelf and I only have three left. Then, I'll start going room to room to make sure everything is organized. I'm so happy to find somebody that I trust because she'll help me when I move as well.
As for the divorce, our attorneys are just trying to come up with an agreement that's fair, yet it seems a bit one-sided as of now. We plan on putting the house up for sale in April. So much to do, so little time!
I got together already with the neighbors for my birthday and it was very nice. We brought in food, had lime martinis and wine, and my friend got an incredible cherry pie that tasted like my grandma used to make. Needless to say, there were lots of nice gifts like a sweater, nice shirt, Bluetooth speaker, and body spray. I'm getting together with my other group of friends next Friday the 13th and we'll again bring in food and just hang out. That's easier for me than going out because I can hear better that way. So if I do end up in the hospital over the holidays, at least we will have already celebrated my birthday. God forbid I miss the celebration!
I also did the race track with my sorority sisters this summer and we all plan to get together again after the new year. I went with Vivian to see Steely Dan on Sep 2nd. It was my sister Lisa's birthday so I went there in her memory because she took me to that concert about 20 years ago.
Tyler's job is going great; he's been there for over two years. It'll be nice when his friend Phil comes in to visit him around New Year's.
I can't wait to take care of my current medical issue so I can make a plan to go south and see my sister Robin, cousin Debbie, and possibly get together with Sheila and Barry. My other trip that I'm looking forward to is going to London and Paris in late May or early June, yet my friend who lives in London has been quite ill so I have not bought tickets yet.
I have not Christmas shopped at all yet. Steve will be going to Michigan prior to Christmas and Tyler and I will spend Christmas Day with my side of the family. This will be our third Christmas since Alyssa has passed but thankfully I still see her in my dreams.
I'm always thinking of anniversaries of my family members passing. Most of my family died rather young: Alyssa at 14, dad at 30, sister Lisa at 36, brother Steve at 49, and mom at 58 and 23 days. In 30 days I will have outlived my mother. It's hard to believe all their lives were so short, and here I am, looking to begin my fresh start at the age of 58!
Happy Holidays and Happy New Year to everyone! Many blessings in 2020.
I saw the eye doctor again and he didn't see any change in my eye even though I told him I see shadows sometimes (when I look straight, it's down to the left). He said it's because when my eye pressure in that area goes down, the shadows turn up. I wish the pressure would stay down because the shadows make me feel existent again, even with the little bit I can see.
I saw the neurosurgeon in October for a routine scan. When he compared them in his office he said there was no change, yet when I read the report online a week later, the radiologist had reported to him the tumor on the left side of my brain doubled in size and has edema (swelling), and my right-side tumor has increased by 50% and has more edema. They also both show more vascular changes, which is not good, because it's the blood vessels that feed the tumors. I also have two cysts that have enlarged as the tumors produce fluid. So, I was a bit worried about that result and called the doctor, and he told me he wasn't too concerned because neurologically I hadn't had enough change that he would open up my head. I mentioned that I get a lot of headaches and he said that's from the tumors and he doesn't want to mask them, but I should let him know if I notice any other signs like falling or balance. My balance sucks already so it's hard to tell if it's worse, unless he means when it's so bad that I tip over. I'll never walk straight because of my vision and hearing problems - together they make you walk crooked.
Next, I went for my routine checkup of my abdomen and pelvis to make sure there is no spread of my cancer, as I'm high risk still from my kidney surgery 2.5 years ago where they believed some cells were left behind. I was lucky enough that the cancer hasn't spread but instead I found out I have a clogged bile duct and enlarged gallbladder and liver. My liver enzymes in all my labs (bilirubin, etc.) are off-the-chart elevated. I hadn't had blood drawn since July so this problem could have been going on for quite a while. But I finally have a reason for all my weight loss (I've lost four more pounds). The symptoms are extreme fatigue, unexplained weight loss, loss of appetite, nausea, yellowing of the skin, itching, muscle aches, and gallbladder pain. I've had all of that.
The itching is making me crazy, I spend 3-5 hours per night itching from head to toe. Nothing helps and I can't sleep, focus, or even watch TV - it's horrible. It comes from my toxic enzyme levels and being jaundiced. This is a worse feeling than the itching problems I've had before.
The reason I have the clogged gallbladder duct is because my abdomen has become filled with cysts that are compressing my stomach and go all the way up to my sternum. There are so many cysts that they have clamped the duct shut.
So, I went to the infectious disease physician on Monday and we repeated the blood work, and since the prior week my labs have even elevated further. This Friday I will be seeing a general surgeon and I'm still waiting to find out what day I'll see the gastroenterologist. I have to discuss it with different people to make sure I'm doing the right thing, and I'm told the doctors can't do anything until my latest bladder infection is gone (I've had two since my last post but it's a different bacteria than I normally get).
My brother Jeff was shocked to hear my scan report. He has had the same issues since April and it's been nothing but problematic. He's been in the hospital 5-6 times and had sepsis and a severe gallbladder attack. They told him with this issue you'll start to produce gallstones, and they found more than 100 in him. Based on his experience, I am going to propose to the doctors that they just remove the gallbladder straight away, and put a stent in down lower. I have to convince them that it's too dangerous to do otherwise. I don't want to repeat what happened to my brother.
They say once you have the surgery or stent done, your levels will go back down and your energy, weight, itchiness, skin tone, etc. will all improve. Unfortunately, I already have liver damage, which apparently is what happens from the levels being so high. But, what really sucks is it'll really mess up my holidays if we can't get it corrected before then. To end my health summary on a positive note, my mammogram was fine. Let's hope my dental appointment next week is fine, too.
Summer went way too fast. It feels like we only got eight weeks this year. Thanksgiving was uneventful - just the three of us and our Boston Market dinner, plus I invited one of my friends to join us as she had no plans, and she and I also went to a movie.
I hired a girl named Chris to help me organize. She's best friends with my cousin Debbie, we get along great, and we are both good purgers so we're getting a lot done. She comes once a week and has been very helpful. We've been working very hard on packing and going through boxes. We had about 20 boxes of stuff on the garage shelf and I only have three left. Then, I'll start going room to room to make sure everything is organized. I'm so happy to find somebody that I trust because she'll help me when I move as well.
As for the divorce, our attorneys are just trying to come up with an agreement that's fair, yet it seems a bit one-sided as of now. We plan on putting the house up for sale in April. So much to do, so little time!
I got together already with the neighbors for my birthday and it was very nice. We brought in food, had lime martinis and wine, and my friend got an incredible cherry pie that tasted like my grandma used to make. Needless to say, there were lots of nice gifts like a sweater, nice shirt, Bluetooth speaker, and body spray. I'm getting together with my other group of friends next Friday the 13th and we'll again bring in food and just hang out. That's easier for me than going out because I can hear better that way. So if I do end up in the hospital over the holidays, at least we will have already celebrated my birthday. God forbid I miss the celebration!
I also did the race track with my sorority sisters this summer and we all plan to get together again after the new year. I went with Vivian to see Steely Dan on Sep 2nd. It was my sister Lisa's birthday so I went there in her memory because she took me to that concert about 20 years ago.
Tyler's job is going great; he's been there for over two years. It'll be nice when his friend Phil comes in to visit him around New Year's.
I can't wait to take care of my current medical issue so I can make a plan to go south and see my sister Robin, cousin Debbie, and possibly get together with Sheila and Barry. My other trip that I'm looking forward to is going to London and Paris in late May or early June, yet my friend who lives in London has been quite ill so I have not bought tickets yet.
I have not Christmas shopped at all yet. Steve will be going to Michigan prior to Christmas and Tyler and I will spend Christmas Day with my side of the family. This will be our third Christmas since Alyssa has passed but thankfully I still see her in my dreams.
I'm always thinking of anniversaries of my family members passing. Most of my family died rather young: Alyssa at 14, dad at 30, sister Lisa at 36, brother Steve at 49, and mom at 58 and 23 days. In 30 days I will have outlived my mother. It's hard to believe all their lives were so short, and here I am, looking to begin my fresh start at the age of 58!
Happy Holidays and Happy New Year to everyone! Many blessings in 2020.
Tuesday, July 23, 2019
Rolling with the changes
I'm happy to say I found something even better than CBD. It is a hemp product from Feel The Reaction and I started using it about six weeks ago. I use a lotion called Relief Pain Cream on my skin twice a day for itching and pain, and I also put a drop of Full Spectrum Extract tincture under my tongue for pain, to reduce pressure on the optic nerve, and hopefully to reduce tumor size. Tyler also started taking it. I like the products so much that now I'm a distributor (more on that later).
I started seeing shadows again after I started using this product. The last time I saw them was before I started dialysis. I've seen shadows probably about 15 different days since early June. When I have them, if I look straight it appears I'm seeing light downward and I can count fingers, see the flashlight on the phone moving around, a head moving around, and anything flashy like the nozzle on the sink. This can really help me navigate better if it improves, and it's helped me with anxiety, stress, and sleeping. I'm looking forward to getting my next set of scans to see if anything else has changed. I'm hoping for tumor shrinkage. At least I found a product that helps and is not an opioid. I think this will be our future.
Neurologically, I was getting some headaches but they seem to be under control now that I'm on Full Spectrum Extract. I did have a few episodes recently, like falling, because of a nasty antibiotic I'd been taking for a bladder infection.
Bladder infections are my continuing issue. I never realized how severe they were until I found out the bug that I was getting in my urine each time is a superbug worse than MRSA, because it's fatal if it moves from my bladder, and now I'm immune to all oral antibiotics to treat it. That scares me.
The latest episode started last month. After 10 days of symptoms and calling my doctors, awaiting an antibiotic or a plan of what to do, they finally put me on something to cover me for the weekend but I did not make it until Monday, unfortunately. I woke up that morning (June 17) with a 104-degree temperature, severe headache, confusion, and what felt like brain spasms. I called my infectious disease doctor at home (it was Father's Day) and he told me to have the doctors call him as soon as I got to the hospital. Steve was out of town so Tyler drove me to Lake Forest ER.
It was very scary not only for myself but for Tyler as it was either a quiet morning at the hospital ER or they were very concerned with me, because I had seven people in my room working on me all at once. There was one on each arm trying to draw blood, one putting a catheter in, one was taking my blood pressure, and others - it was just crazy. I had a lot of different scans to make sure the bug hadn't traveled to my lungs or outside my bladder-kidney area, and was admitted for 5-6 days for antibiotics through a pic line.
Coming home, I felt good until the home health team arrived and started an even more toxic antibiotic. After four days I made them stop - I was falling, walking crooked, crossing my legs over each other, mumbling, had a horrible headache, and I was lost in my house - it was so weird.
I went back to see the infectious disease doctor and my blood came back negative, so I'm not on any antibiotics now as it appears the infection is gone, for now, so that's good. Unfortunately, the next time I have a bladder infection, I have to go to the hospital and they'll have to figure out a different drug for me. I'm kind of aggravated it got to this point after nearly three years of continual bladder infections with the same superbug.
I updated my neurosurgeon on the neurological problems I had, and I just got signed out of PT on Saturday. I'd been doing OT and PT for three weeks to strengthen my balance and motor skills. Also since the toxic antibiotic, my memory is not as sharp as it used to be. I'm forgetting things now and I always used to have a great memory. I need to start using brain games on my phone or something. I'm still not 100% neurologically and I'm going to ask my doctor about that.
This past Wednesday I went to the pain clinic and got another injection to treat recurring pain from an injury I had a couple years ago (walking into a truck). They told me that my sacroiliac joint (in the pelvic area) is so small that when it inflames, I get severe nerve pain. The injection is working great so I can get back to exercising again. Before that I had been exercising and active until the beginning of June, but had to stop when they thought I was aggravating the joint by exercising so much.
Interestingly, the pain clinic said they no longer prescribe any opioids; they would rather give medical marijuana, which will be legal in Illinois in January. I've been off opioids since the end of May 2018, a week after I started on CBD, and I'm still off them with the hemp product.
One concern is I've now lost six more pounds and weigh around 90 lbs. I don't know if it's from my stomach shrinking and I feel like I can't eat as much, or what. But I still eat what I normally eat, or more, so I don't get it. That's 15 pounds lost in a year. It's another question for my doctor.
Now for the fun part. I was able to take my vacation to Florida in June starting with attending my niece Olivia's high school graduation. I was so proud of her as she graduated with a 4.4 GPA and got $80,000 in scholarship money. Then I spent a week with Sheila and Barry in Clearwater Beach. My brother Jeff was able to join us for part of that visit, too, and then he and I went on to my sister's house in North Port.
It was such a great, relaxing vacation in Clearwater. We walked every day about 2.5 miles on the beach, and I was even able to walk by myself by following the shoreline, without holding on to anyone, because the sand was so flat and clean. It was awesome! And we would jump in the pool and tread water and just talk and stuff. The condo was just perfect and we went out for dinner several nights. My nieces came out one day and Alan and Barbi joined us another day. I was glad to meet those two because I'd planned to see them (with Sheila and Barry) in London for a few days in July while I visited Michele, but unfortunately I had to cancel that trip when I got my bladder infection. Thankfully I had trip insurance so I got a refund. So I have to plan another trip to London, and I would still also like to go to Texas this year.
I finally went to see Elton John in February. Vicky, Carrie, Tabetha, and I started the evening with dinner and then spent an hour in traffic trying to cross the street to the concert, but the concert was amazing. We wore a variety of Elton John glasses (mine lit up) and he dressed his flamboyant part. He put on a phenomenal show - about three hours long with no break.
I'm always searching out a good concert and plan to go to Ravinia still at least once this season, but definitely for Steely Dan. I've also seen some local entertainment and I'm going tonight to see a Beatles band called Kaleidoscope Eyes. And, I have a date planned at the race track in August with my sorority sisters - an annual event that's so fun. Lori Pritchett, Carrie, Vicky, Jeryl, Patti, and I will sit in a booth with a table there, and I'm hoping to get together with them one other day this summer. I get out any chance I can after being cooped up so much over the winter and spring - I don't say no to anything!
The big news is from March. Steve went to Hawaii with Tyler and Lindsay first class for a week, and I went to file for divorce. When he returned, I told him I thought it was easier for me to be the one to initiate the divorce because it would not make him look bad leaving a sick, blind wife. I told him I thought it was best for us to part ways and hope that we can find happiness. It's been a long 10 years of medical issues, then blindness, and then the tragic loss of Alyssa.
So, as for now, we're busy going through boxes and purging the incredible amount of crap we've collected over 20 years. As it gets closer we'll paint and re-carpet and put our house on the market, and I plan to stay local in an apartment. I've actually found one that I really think would work for me but I'm not sure what the money would allow at this point. I just take one day at a time because it's going to be a long year, waiting for the divorce to be finalized, and I can't control all the fine details for the future.
Tyler turned 24 earlier this month. I felt so bad telling him about the divorce but I know he knew our marriage was not a normal one. He pretty much stays neutral but I feel like he's lost his sister and now with his parents splitting, he must be very sad. As for therapy, I still remain the only one that sees a therapist regularly though Tyler has gone several times.
My sister Robin, the healthy one, has been ill lately. Back in June, when we were visiting her in Florida, she was having a lot of stomach pains and nausea. It kept getting worse and she couldn't eat anything as it would cause her to double over in pain. She changed doctors 2-3 times trying to find a diagnosis, and she ended up in the ER. They did a CT scan and told her she had a perforated bowel and needed emergency surgery, so they took her by ambulance to a bigger hospital. The doctors told her it was very risky, she would most likely wake up with a colostomy bag, and if any stool in the bowel leaked out into the abdomen, it could be fatal. She was freaking out and her husband was out of town. Now for the good news: When they opened her up, the bowel looked perfect. It was as if there had been a miracle because they have absolutely no explanation for it (unless they read the wrong scan). She woke up three hours later with an incision from her sternum to her pelvic area but to good news. But, she's still having the pain and has lost like 17 pounds. She also hasn't smoked for about five weeks, so her girls and I are so happy about that. She calculates she would have spent $160 on cigarettes in that time. Now they're doing workups as the doctors are convinced there is still something wrong. They will do an endoscopy and colonoscopy, and she's waiting on a new CT scan report. She's been unable to work but is happy that all her girls were home this summer as she needed all the help. Taylor and Olivia leave for college next month.
My brother Jeff feels good, so he's happy. He had been having problems with his gall bladder duct as his pancreas is so large it was pushing the duct closed, so they put two stents in and his numbers are now better than they've ever been. He has been getting some weird headaches but there has been some stress in their household lately so he's postponed looking into that. Otherwise, he's been having fun taking the kids around to the water parks, movies, bike riding, and hiking this summer.
Regarding the hemp products from Feel The Reaction, see their website, www.feelthereaction.com, and then call me as I have more testimonials about it than you can imagine for issues like aches, pains, high blood pressure, anxiety, itching, MS, fibromyalgia, any autoimmune disorders like Chrone's disease, any inflammatory disease, sleeping issues, and tumors. You can order directly as a "guest of Kim Gillespie" from www.mylifessimple.com/dragonfly.
Thank you to those who helped me start the process of going through the house and boxes and purging. My cousin Debbie wrapped up my entire china cabinet and my friends Rianne and Lisa have also offered their time, for example. Thank you to Adeline for being my home IV infuser - she was so excited because she's a nursing student. Thank you to everyone who has driven me to therapy and other appointments. Fortunately there have been fewer this summer. And of course I thank Suzanne, who is not only my great friend but also my #1 right arm.
Good luck as you send your kids off to school and college and with your graduates finding employment or developing in their careers. Hope we have an Indian summer since the season started so late this year. Otherwise, anytime I'm called, I'm free to get out. I'm up for anything.
I started seeing shadows again after I started using this product. The last time I saw them was before I started dialysis. I've seen shadows probably about 15 different days since early June. When I have them, if I look straight it appears I'm seeing light downward and I can count fingers, see the flashlight on the phone moving around, a head moving around, and anything flashy like the nozzle on the sink. This can really help me navigate better if it improves, and it's helped me with anxiety, stress, and sleeping. I'm looking forward to getting my next set of scans to see if anything else has changed. I'm hoping for tumor shrinkage. At least I found a product that helps and is not an opioid. I think this will be our future.
Neurologically, I was getting some headaches but they seem to be under control now that I'm on Full Spectrum Extract. I did have a few episodes recently, like falling, because of a nasty antibiotic I'd been taking for a bladder infection.
Bladder infections are my continuing issue. I never realized how severe they were until I found out the bug that I was getting in my urine each time is a superbug worse than MRSA, because it's fatal if it moves from my bladder, and now I'm immune to all oral antibiotics to treat it. That scares me.
The latest episode started last month. After 10 days of symptoms and calling my doctors, awaiting an antibiotic or a plan of what to do, they finally put me on something to cover me for the weekend but I did not make it until Monday, unfortunately. I woke up that morning (June 17) with a 104-degree temperature, severe headache, confusion, and what felt like brain spasms. I called my infectious disease doctor at home (it was Father's Day) and he told me to have the doctors call him as soon as I got to the hospital. Steve was out of town so Tyler drove me to Lake Forest ER.
It was very scary not only for myself but for Tyler as it was either a quiet morning at the hospital ER or they were very concerned with me, because I had seven people in my room working on me all at once. There was one on each arm trying to draw blood, one putting a catheter in, one was taking my blood pressure, and others - it was just crazy. I had a lot of different scans to make sure the bug hadn't traveled to my lungs or outside my bladder-kidney area, and was admitted for 5-6 days for antibiotics through a pic line.
Coming home, I felt good until the home health team arrived and started an even more toxic antibiotic. After four days I made them stop - I was falling, walking crooked, crossing my legs over each other, mumbling, had a horrible headache, and I was lost in my house - it was so weird.
I went back to see the infectious disease doctor and my blood came back negative, so I'm not on any antibiotics now as it appears the infection is gone, for now, so that's good. Unfortunately, the next time I have a bladder infection, I have to go to the hospital and they'll have to figure out a different drug for me. I'm kind of aggravated it got to this point after nearly three years of continual bladder infections with the same superbug.
I updated my neurosurgeon on the neurological problems I had, and I just got signed out of PT on Saturday. I'd been doing OT and PT for three weeks to strengthen my balance and motor skills. Also since the toxic antibiotic, my memory is not as sharp as it used to be. I'm forgetting things now and I always used to have a great memory. I need to start using brain games on my phone or something. I'm still not 100% neurologically and I'm going to ask my doctor about that.
This past Wednesday I went to the pain clinic and got another injection to treat recurring pain from an injury I had a couple years ago (walking into a truck). They told me that my sacroiliac joint (in the pelvic area) is so small that when it inflames, I get severe nerve pain. The injection is working great so I can get back to exercising again. Before that I had been exercising and active until the beginning of June, but had to stop when they thought I was aggravating the joint by exercising so much.
Interestingly, the pain clinic said they no longer prescribe any opioids; they would rather give medical marijuana, which will be legal in Illinois in January. I've been off opioids since the end of May 2018, a week after I started on CBD, and I'm still off them with the hemp product.
One concern is I've now lost six more pounds and weigh around 90 lbs. I don't know if it's from my stomach shrinking and I feel like I can't eat as much, or what. But I still eat what I normally eat, or more, so I don't get it. That's 15 pounds lost in a year. It's another question for my doctor.
Now for the fun part. I was able to take my vacation to Florida in June starting with attending my niece Olivia's high school graduation. I was so proud of her as she graduated with a 4.4 GPA and got $80,000 in scholarship money. Then I spent a week with Sheila and Barry in Clearwater Beach. My brother Jeff was able to join us for part of that visit, too, and then he and I went on to my sister's house in North Port.
It was such a great, relaxing vacation in Clearwater. We walked every day about 2.5 miles on the beach, and I was even able to walk by myself by following the shoreline, without holding on to anyone, because the sand was so flat and clean. It was awesome! And we would jump in the pool and tread water and just talk and stuff. The condo was just perfect and we went out for dinner several nights. My nieces came out one day and Alan and Barbi joined us another day. I was glad to meet those two because I'd planned to see them (with Sheila and Barry) in London for a few days in July while I visited Michele, but unfortunately I had to cancel that trip when I got my bladder infection. Thankfully I had trip insurance so I got a refund. So I have to plan another trip to London, and I would still also like to go to Texas this year.
I finally went to see Elton John in February. Vicky, Carrie, Tabetha, and I started the evening with dinner and then spent an hour in traffic trying to cross the street to the concert, but the concert was amazing. We wore a variety of Elton John glasses (mine lit up) and he dressed his flamboyant part. He put on a phenomenal show - about three hours long with no break.
I'm always searching out a good concert and plan to go to Ravinia still at least once this season, but definitely for Steely Dan. I've also seen some local entertainment and I'm going tonight to see a Beatles band called Kaleidoscope Eyes. And, I have a date planned at the race track in August with my sorority sisters - an annual event that's so fun. Lori Pritchett, Carrie, Vicky, Jeryl, Patti, and I will sit in a booth with a table there, and I'm hoping to get together with them one other day this summer. I get out any chance I can after being cooped up so much over the winter and spring - I don't say no to anything!
The big news is from March. Steve went to Hawaii with Tyler and Lindsay first class for a week, and I went to file for divorce. When he returned, I told him I thought it was easier for me to be the one to initiate the divorce because it would not make him look bad leaving a sick, blind wife. I told him I thought it was best for us to part ways and hope that we can find happiness. It's been a long 10 years of medical issues, then blindness, and then the tragic loss of Alyssa.
So, as for now, we're busy going through boxes and purging the incredible amount of crap we've collected over 20 years. As it gets closer we'll paint and re-carpet and put our house on the market, and I plan to stay local in an apartment. I've actually found one that I really think would work for me but I'm not sure what the money would allow at this point. I just take one day at a time because it's going to be a long year, waiting for the divorce to be finalized, and I can't control all the fine details for the future.
Tyler turned 24 earlier this month. I felt so bad telling him about the divorce but I know he knew our marriage was not a normal one. He pretty much stays neutral but I feel like he's lost his sister and now with his parents splitting, he must be very sad. As for therapy, I still remain the only one that sees a therapist regularly though Tyler has gone several times.
My sister Robin, the healthy one, has been ill lately. Back in June, when we were visiting her in Florida, she was having a lot of stomach pains and nausea. It kept getting worse and she couldn't eat anything as it would cause her to double over in pain. She changed doctors 2-3 times trying to find a diagnosis, and she ended up in the ER. They did a CT scan and told her she had a perforated bowel and needed emergency surgery, so they took her by ambulance to a bigger hospital. The doctors told her it was very risky, she would most likely wake up with a colostomy bag, and if any stool in the bowel leaked out into the abdomen, it could be fatal. She was freaking out and her husband was out of town. Now for the good news: When they opened her up, the bowel looked perfect. It was as if there had been a miracle because they have absolutely no explanation for it (unless they read the wrong scan). She woke up three hours later with an incision from her sternum to her pelvic area but to good news. But, she's still having the pain and has lost like 17 pounds. She also hasn't smoked for about five weeks, so her girls and I are so happy about that. She calculates she would have spent $160 on cigarettes in that time. Now they're doing workups as the doctors are convinced there is still something wrong. They will do an endoscopy and colonoscopy, and she's waiting on a new CT scan report. She's been unable to work but is happy that all her girls were home this summer as she needed all the help. Taylor and Olivia leave for college next month.
My brother Jeff feels good, so he's happy. He had been having problems with his gall bladder duct as his pancreas is so large it was pushing the duct closed, so they put two stents in and his numbers are now better than they've ever been. He has been getting some weird headaches but there has been some stress in their household lately so he's postponed looking into that. Otherwise, he's been having fun taking the kids around to the water parks, movies, bike riding, and hiking this summer.
Regarding the hemp products from Feel The Reaction, see their website, www.feelthereaction.com, and then call me as I have more testimonials about it than you can imagine for issues like aches, pains, high blood pressure, anxiety, itching, MS, fibromyalgia, any autoimmune disorders like Chrone's disease, any inflammatory disease, sleeping issues, and tumors. You can order directly as a "guest of Kim Gillespie" from www.mylifessimple.com/dragonfly.
Thank you to those who helped me start the process of going through the house and boxes and purging. My cousin Debbie wrapped up my entire china cabinet and my friends Rianne and Lisa have also offered their time, for example. Thank you to Adeline for being my home IV infuser - she was so excited because she's a nursing student. Thank you to everyone who has driven me to therapy and other appointments. Fortunately there have been fewer this summer. And of course I thank Suzanne, who is not only my great friend but also my #1 right arm.
Good luck as you send your kids off to school and college and with your graduates finding employment or developing in their careers. Hope we have an Indian summer since the season started so late this year. Otherwise, anytime I'm called, I'm free to get out. I'm up for anything.
Sunday, February 3, 2019
My motto: I will survive
My CBD continues to work for me. I no longer need to take my narcotics or blood pressure pill, I sleep better, and I'm more calm. CBD also returned my glaucoma pressure to normal (it used to be high) and if I can get it to go lower, the doctor will let me stop taking the eye drops.
In terms of my vision, I'm convinced I am going to remain blind because I've not seen shadows in a long time, and I'm starting to get pain in my eyelid and shooting pain in my eye (it's reminding me of what happened when I was losing my other eye). My eye is still bleeding into the pupil and the iris, and it gets bloodshot more frequently and very irritated. It's all side effects of the radiation I did.
Another good CBD effect is that I had my first perfect dental checkup in about 20 years - no cavities! They say it keeps the bacteria level down in your mouth. I hear they are now trialing CBD on dogs for various conditions. I'm really hopeful it will get covered by insurance soon. I could be their spokesperson - it really works for me.
Regarding my neuro status, everything was unchanged in my brain and spinal scan, although there were two small growths in my cerebellum. That can explain some of my headache and balance issues, but they said it'd be hard to determine which growth is causing the problems so he wants to just watch it for a while. I haven't noticed it worsening much and the headaches are not bad.
My pancreas was drained several times but the last few times it bled during draining. My cysts are becoming more complicated, where there are septations between them, which makes them vascular and causes the bleeding, so I may not have it drained again. The goal was to relieve pressure and nausea as my abdomen is filled with cysts where my kidneys used to be.
I've had continual bladder infections for about nine months. A specialist had me on a regimen of probiotics, antibiotics, cranberry pills, and super vitamins, yet I continue to get the same infection. My body became immune to that protocol after a year and a half. A week ago I had a CT scan but she didn't see a kidney stone or abscess. She wanted to see me in three months, but four days later I got incredible bladder symptoms again. Tomorrow she will be calling with a plan. She wants me to see an infectious disease doctor but before that she wants me to have a cystoscopy to look at my bladder and into my kidney and take specimens from both to see if they can figure out is going on. Then, the infectious disease doctor may start me on home IV antibiotics with a pic line, but I'm hoping he'll find a miracle pill that will change my urine to be less acidic or alkaline or whatever. In the meantime, I'm just miserable waiting for them to give me something.
Unfortunately, I learned the only antibiotic that had been responding causes arthritis and tendinitis. I was at a pain clinic recently and brought up the pain in my knees and three finger joints, and they said it was arthritis from my antibiotic. I was there to treat a pain that recurred from a few years back when I walked into a truck in my neighborhood; it shoots from my butt cheek up into my back. They gave me an injection of Lidocaine mixed with a steroid that isn't working yet, but I certainly hope it will. The last time it worked instantly.
I was doing well with my skin but then they found an area on my right arm that they biopsied and it came back positive, so they took a 3-inch excision from there. They also used a lot of cryo spray to freeze precancerous lesions on my arms, legs, and feet. They did one foot so much that I could barely walk on it. When I went in to get my sutures out, they told me I need more Mohs surgery on my lip. I'll do that on Feb. 28 (if not sooner), and then go to plastic surgery, and then I'll put a bag on my face for a week. It's hard to eat or talk or anything while it heals.
I started a pill for my "itching" which is actually a worm-like crawling in the layer under my skin. Anti-itch lotion has not worked and my skin doctor couldn't figure it out, but my neurologist did: I have very severe cervical stenosis (meaning the opening where all my nerves go in and out is very narrow), and my nerve sends these signals that there's something under my skin. Now I take about six pills a day and it seems to be the way to keep it under control.
My weight is still down 10 pounds and I still don't know why. They didn't see any cancer in my chest xray - I was worried the weight loss was due to that. On the bright side, it'll be a full two years in March since my last kidney removal. They have me doing abdominal and chest scans every six months for five years because I'm at high risk for recurring cancer, and two years are almost over! Another birthday is coming: in three days my new kidney ("Gladys") will be three years old.
Now for the fun stuff. In October, for Halloween, we went away with the girls to Galena for Suzanne's birthday and had a blast going shopping, to restaurants, a parade, and wineries.
In November, our family went to Lindsay William's family home for Thanksgiving dinner. It was so much fun that Tyler and I didn't get home until 11:30 pm, but Steve left earlier as he was leaving town the next morning.
December started as a bit of a wash, mostly just Christmas shopping, but the weather wasn't bad - very mild. Christmastime was very nice, especially after last Christmas. We went to church (that was important to me), and exchanged gifts in the morning, and it was like we were a family again. On Christmas Eve, Tyler and I went back to the Williams'. On Christmas Day, we all went to my cousin Curt's house in Naperville and had a fun-filled day there. We did 12 Days of Christmas, Must Be Santa, took pictures by the tree, and it was a nice and really relaxing day.
The week of New Year's, Sheila and Barry came in town and we all got together for dinner at a piano bar and were joined by some other friends, and we also went to our annual neighborhood NYE party at Angela's and Ron's, which is like a game night with fireworks and lots of food and good fun.
I went to see my sister in Florida from January 12-20. The weather was pretty sunny and nice, we went to the beach a few times, saw some movies, and went to a state park with all different types of palm trees and a swinging bridge. One day at the beach I wanted to hear the ocean waves so my sister walked me out to the end of the jetty. It was a fun challenge because the rocks were so crooked and she had to direct me with every step. We also went to another drum circle - it was the biggest they've ever seen. We danced like free birds, feeling the rhythm and having it move you. It's very fun and a kind of spiritual feeling.
Of course we went to my favorite bar and had my key lime colada that I like so much. The bar always has live entertainment and you can dock your boat right there. It's huge with tons of seating and big couches. One night it was cold there but a fire pit kept us warm. (Since I've been back from Florida, we've had several inches of snow and bitter freezing temperatures. I don't ever remember the weather being like this.)
This year for Christmas we sent to all of Alyssa's friends and female cousins necklaces that were angel wings and purple stones on a chain, with a letter telling them they can wear it or hang it on their wall to remind them of her. First I heard from Jeff, who by the way is doing well, and his two girls who called specially to thank me for the necklaces. We also sent Anthony a separate gift so he would not feel left out. Unfortunately, Cindy had a tough six months after losing both her mom and dad and turning 50.
Robin's girls, all three of them, got necklaces and they called as well. Brittney is a secretary to an owner of a landscape firm; Taylor is a freshman in college now studying business (her dream is to open a cafe with live entertainment and call it Rosanne's); Olivia is finishing her senior year of high school and working at Taco Bell; Robin works at a grocery store; and Jordan continues to race and build race cars for a hobby and he does NASCAR marketing for work.
Steve is doing the same sales position and his territory changed so he now covers Wisconsin and Chicago (no more Minnesota). Tyler was recently promoted in his company. It was bought out by another company and he's dealing with bigger and higher quality customers now. He was one of a few chosen to stay on from the old company. He's still with Lindsay, who finishes her Master's in August.
This past Friday I went to a concert with Tyler, Lori Pritchett, and her boyfriend to see American English (a Beatles band) and Abbamania. I'll also see Elton John on Feb. 16 with my neighbor Tabitha and two sorority sisters, Carrie and Vickie. I'm sad to know Elton will tour no more but I'm so glad I'm going to this concert. The tour is supposed to be the best he's ever done.
Every night I dream about Alyssa. The two year anniversary of her passing is this month on the 27th. It's hard to believe that it's been this long. Not a day goes by where I don't think of her or get reminded of her, and I continue to dream of her every night since the day she passed. If I truly am having heavenly dreams, we are all going to love heaven. Everyone that has passed is in my dreams, but also those who are living are there, and the best part of it all is anyone who ever looked sick or aged prior to death now appears young, vivacious, and the best I ever remembered them looking.
The bereavement process, I think, never ends when you lose a child because it's like losing a piece of yourself, like an amputation. It's like you're a new person but lacking a large part of your past. When we went to the piano bar before New Year's, the pianist played the song "I Will Survive" by Gloria Gaynor, and I realized that would be my motto.
On a good note, I'm hoping the groundhog is right and we do get an early spring, as spring makes me a happier person. Once everyone is out and about more, I'm hoping to get together with more friends. I'm starting my kickoff with a neighborhood Superbowl party today. My plans for travel this year include Florida, London and Texas, a I'm looking forward to that. And this is my year to get fit. I started walking three miles every day and now I'm getting hand weights to help with balance.
Big thank you to all of you who helped with all of my driving (you know who you are). Always know I couldn't do it without you.
In terms of my vision, I'm convinced I am going to remain blind because I've not seen shadows in a long time, and I'm starting to get pain in my eyelid and shooting pain in my eye (it's reminding me of what happened when I was losing my other eye). My eye is still bleeding into the pupil and the iris, and it gets bloodshot more frequently and very irritated. It's all side effects of the radiation I did.
Another good CBD effect is that I had my first perfect dental checkup in about 20 years - no cavities! They say it keeps the bacteria level down in your mouth. I hear they are now trialing CBD on dogs for various conditions. I'm really hopeful it will get covered by insurance soon. I could be their spokesperson - it really works for me.
Regarding my neuro status, everything was unchanged in my brain and spinal scan, although there were two small growths in my cerebellum. That can explain some of my headache and balance issues, but they said it'd be hard to determine which growth is causing the problems so he wants to just watch it for a while. I haven't noticed it worsening much and the headaches are not bad.
My pancreas was drained several times but the last few times it bled during draining. My cysts are becoming more complicated, where there are septations between them, which makes them vascular and causes the bleeding, so I may not have it drained again. The goal was to relieve pressure and nausea as my abdomen is filled with cysts where my kidneys used to be.
I've had continual bladder infections for about nine months. A specialist had me on a regimen of probiotics, antibiotics, cranberry pills, and super vitamins, yet I continue to get the same infection. My body became immune to that protocol after a year and a half. A week ago I had a CT scan but she didn't see a kidney stone or abscess. She wanted to see me in three months, but four days later I got incredible bladder symptoms again. Tomorrow she will be calling with a plan. She wants me to see an infectious disease doctor but before that she wants me to have a cystoscopy to look at my bladder and into my kidney and take specimens from both to see if they can figure out is going on. Then, the infectious disease doctor may start me on home IV antibiotics with a pic line, but I'm hoping he'll find a miracle pill that will change my urine to be less acidic or alkaline or whatever. In the meantime, I'm just miserable waiting for them to give me something.
Unfortunately, I learned the only antibiotic that had been responding causes arthritis and tendinitis. I was at a pain clinic recently and brought up the pain in my knees and three finger joints, and they said it was arthritis from my antibiotic. I was there to treat a pain that recurred from a few years back when I walked into a truck in my neighborhood; it shoots from my butt cheek up into my back. They gave me an injection of Lidocaine mixed with a steroid that isn't working yet, but I certainly hope it will. The last time it worked instantly.
I was doing well with my skin but then they found an area on my right arm that they biopsied and it came back positive, so they took a 3-inch excision from there. They also used a lot of cryo spray to freeze precancerous lesions on my arms, legs, and feet. They did one foot so much that I could barely walk on it. When I went in to get my sutures out, they told me I need more Mohs surgery on my lip. I'll do that on Feb. 28 (if not sooner), and then go to plastic surgery, and then I'll put a bag on my face for a week. It's hard to eat or talk or anything while it heals.
I started a pill for my "itching" which is actually a worm-like crawling in the layer under my skin. Anti-itch lotion has not worked and my skin doctor couldn't figure it out, but my neurologist did: I have very severe cervical stenosis (meaning the opening where all my nerves go in and out is very narrow), and my nerve sends these signals that there's something under my skin. Now I take about six pills a day and it seems to be the way to keep it under control.
My weight is still down 10 pounds and I still don't know why. They didn't see any cancer in my chest xray - I was worried the weight loss was due to that. On the bright side, it'll be a full two years in March since my last kidney removal. They have me doing abdominal and chest scans every six months for five years because I'm at high risk for recurring cancer, and two years are almost over! Another birthday is coming: in three days my new kidney ("Gladys") will be three years old.
Now for the fun stuff. In October, for Halloween, we went away with the girls to Galena for Suzanne's birthday and had a blast going shopping, to restaurants, a parade, and wineries.
In November, our family went to Lindsay William's family home for Thanksgiving dinner. It was so much fun that Tyler and I didn't get home until 11:30 pm, but Steve left earlier as he was leaving town the next morning.
December started as a bit of a wash, mostly just Christmas shopping, but the weather wasn't bad - very mild. Christmastime was very nice, especially after last Christmas. We went to church (that was important to me), and exchanged gifts in the morning, and it was like we were a family again. On Christmas Eve, Tyler and I went back to the Williams'. On Christmas Day, we all went to my cousin Curt's house in Naperville and had a fun-filled day there. We did 12 Days of Christmas, Must Be Santa, took pictures by the tree, and it was a nice and really relaxing day.
The week of New Year's, Sheila and Barry came in town and we all got together for dinner at a piano bar and were joined by some other friends, and we also went to our annual neighborhood NYE party at Angela's and Ron's, which is like a game night with fireworks and lots of food and good fun.
I went to see my sister in Florida from January 12-20. The weather was pretty sunny and nice, we went to the beach a few times, saw some movies, and went to a state park with all different types of palm trees and a swinging bridge. One day at the beach I wanted to hear the ocean waves so my sister walked me out to the end of the jetty. It was a fun challenge because the rocks were so crooked and she had to direct me with every step. We also went to another drum circle - it was the biggest they've ever seen. We danced like free birds, feeling the rhythm and having it move you. It's very fun and a kind of spiritual feeling.
Of course we went to my favorite bar and had my key lime colada that I like so much. The bar always has live entertainment and you can dock your boat right there. It's huge with tons of seating and big couches. One night it was cold there but a fire pit kept us warm. (Since I've been back from Florida, we've had several inches of snow and bitter freezing temperatures. I don't ever remember the weather being like this.)
This year for Christmas we sent to all of Alyssa's friends and female cousins necklaces that were angel wings and purple stones on a chain, with a letter telling them they can wear it or hang it on their wall to remind them of her. First I heard from Jeff, who by the way is doing well, and his two girls who called specially to thank me for the necklaces. We also sent Anthony a separate gift so he would not feel left out. Unfortunately, Cindy had a tough six months after losing both her mom and dad and turning 50.
Robin's girls, all three of them, got necklaces and they called as well. Brittney is a secretary to an owner of a landscape firm; Taylor is a freshman in college now studying business (her dream is to open a cafe with live entertainment and call it Rosanne's); Olivia is finishing her senior year of high school and working at Taco Bell; Robin works at a grocery store; and Jordan continues to race and build race cars for a hobby and he does NASCAR marketing for work.
Steve is doing the same sales position and his territory changed so he now covers Wisconsin and Chicago (no more Minnesota). Tyler was recently promoted in his company. It was bought out by another company and he's dealing with bigger and higher quality customers now. He was one of a few chosen to stay on from the old company. He's still with Lindsay, who finishes her Master's in August.
This past Friday I went to a concert with Tyler, Lori Pritchett, and her boyfriend to see American English (a Beatles band) and Abbamania. I'll also see Elton John on Feb. 16 with my neighbor Tabitha and two sorority sisters, Carrie and Vickie. I'm sad to know Elton will tour no more but I'm so glad I'm going to this concert. The tour is supposed to be the best he's ever done.
Every night I dream about Alyssa. The two year anniversary of her passing is this month on the 27th. It's hard to believe that it's been this long. Not a day goes by where I don't think of her or get reminded of her, and I continue to dream of her every night since the day she passed. If I truly am having heavenly dreams, we are all going to love heaven. Everyone that has passed is in my dreams, but also those who are living are there, and the best part of it all is anyone who ever looked sick or aged prior to death now appears young, vivacious, and the best I ever remembered them looking.
The bereavement process, I think, never ends when you lose a child because it's like losing a piece of yourself, like an amputation. It's like you're a new person but lacking a large part of your past. When we went to the piano bar before New Year's, the pianist played the song "I Will Survive" by Gloria Gaynor, and I realized that would be my motto.
On a good note, I'm hoping the groundhog is right and we do get an early spring, as spring makes me a happier person. Once everyone is out and about more, I'm hoping to get together with more friends. I'm starting my kickoff with a neighborhood Superbowl party today. My plans for travel this year include Florida, London and Texas, a I'm looking forward to that. And this is my year to get fit. I started walking three miles every day and now I'm getting hand weights to help with balance.
Big thank you to all of you who helped with all of my driving (you know who you are). Always know I couldn't do it without you.
Sunday, September 9, 2018
I feel like a new me with CBD
Since my last post, I have found a new self-treatment for many of my issues. It is called cannabidiol (CBD) oil. When visiting my sister Robin, I called the distributor who her husband got it from to see if there was any chance of this oil helping me. She recommended I start on the highest dosage for the multitude of problems I have, but I decided to go with a medium dose, 500mg twice a day, so that if my problems worsened, I had another level to go to. I could be the spokesperson for this CBD oil as it has helped me tremendously.
First of all, I had a headache that lasted from February through the end of June and I was very concerned that the brain tumor I had was growing. I ended up getting a full set of MRI scans of my head and spine and learned everything was unchanged. Then, about 10 days after starting the oil, I realized I hadn't had a headache in a couple days. At first I thought no way, it had to be coincidental, but then it caused my pain to decrease where I didn't feel I even needed any pain pills any longer. Since that point, I have stopped taking pain medication altogether. It's so amazing. I even had a recurring pain in my back that went away when I took the oil.
I was hoping that my glaucoma pressure would also go down as it has not been normal in about 10 years. I went to see the eye doctor a week ago and it is now normal, but he still wants me to continue the prescribed drops a little bit longer to make sure it remains that way. Unfortunately, when I asked what the odds are of ever seeing again, he said there would be a 0% chance in my lifetime with technology as it is now, so it would have to be miracle from above.
Another incredible effect has been my blood pressure. Most kidney patients have chronic hypertension, but since starting CBD, my pressure has significantly dropped into the normal range. About a month ago the doctor cut my blood pressure pill dose in half, and today she stopped it altogether. I'm going to monitor it for two weeks to make sure it doesn't rebound up again.
As for the ultrasound for my thyroid gland, I was found to have two cysts and they are both cystic and require no treatment, which was a relief. My mammogram was perfect.
I had a six-month follow-up MRI of my abdomen and chest x-ray to make sure no cancer had spread when they removed my left kidney (there was cancer in the fat around it prior to removal), and everything was fine. I am now at 18 months but I'll need scans every six months for five years because I'm still at high risk for metastasis.
I need to do a colonoscopy on the 24th because I'm having a lot of digestive issues and lost six pounds, and I don't know why I'm losing weight. My pancreatic cysts continue to enlarge and sometimes go back down a little on their own, but I will definitely remove the fluid the next time they get big because they cause pressure.
My skin still has the crawling feeling and I'm taking new medication for it, but it remains bumpy and discolored, especially on my arms. I saw the skin doctor about three weeks ago and they did three biopsies, but I was happy to know this was the first time it did not require Mohs surgery. So, the CBD oil is also a possible anti-cancer treatment. It's been so good for me that people see my results and 20 of my friends/family have now ordered the oil.
Other than that, I've had quite a bit of insomnia, and fatigue as a result. Perhaps it has some thing to do with menopause.
On a better note, I've had an awesome summer. I visited my sister Robin in Florida from May 15 through the beginning of June, where I was able to see her daughter Taylor graduate from high school. She is now in college in Pennsylvania.
Although the weather was very uncooperative due to rain, we were all able to enjoy our time together. I learned some new dance moves from the girls - the dab and the nae-nae - and I learned how to twerk. It was a lot of fun seeing how these kids learned to rap.
We went to several restaurants, one in the middle of the woods and surrounded by a waterway with boats going by while you are eating. It was like I was on safari in the middle of the wildlife. We went to Sharky's, named because the pier connected to the restaurant happens to be the #1 place to catch sharks in Florida. After eating we walked out to talk to some men about how they really catch shark off of the pier. They're up about three-stories high and they said when they feel one, they pull it in and have a net at the bottom that catches it, and they drag it to shore. They catch about 3-4 sharks a day off this pier, which freaks me out because I used to swim at this beach. Now with the red tide, I hear this beach has about three dead sharks washing up on shore daily, among other fish.
My sister also took me to a drum circle, which is basically a large group of people, most not knowing each other, who come together a couple times a week on the beach and play their drums. Once one starts a rhythm, the next joins in and on and on, and eventually it's almost as if they planned it to have a certain rhythm. People dance like freedom dancers, spinning with their arms out. Then, at sundown, they play conch shells for about five minutes as the sun sets behind the water. Without sight, it felt like a very spiritually connected moment.
We went to the beach one day for about 20 minutes. I never took off my cover-up because a big black cloud opened up above us and ruined my only day at the beach. I think I will wait for rainy season to end before I return.
Next, I traveled to my brother Jeff's home in Golden, CO, outside of Boulder, and was there for 10 days. What a totally different experience it was after Florida. We were out every day canoeing, hiking, rafting, picnicking, touring Boulder and Denver, and saw many street musicians and homeless people, while absorbing the smell of pot. The people there seemed very into nature and very outdoorsy. There is just so much wildlife everywhere.
I had a blast with my nieces Emma (14) and Makena (8) and my nephew Anthony (16), and finally had some great visiting time with my brother. Sheila joined us for the last five days and we all went whitewater rafting and canoeing, hiked to a waterfall, shopped, and enjoyed a carriage ride and hotel night in downtown Boulder. Cindy was traveling with some friends but she was able to spend one day with us.
I realized how much Emma really missed Alyssa as she was displayed all over her room and she still sleeps with the blanket Alyssa gave her and keeps in touch with all Alyssa's friends on Instagram. I mentioned we were going to be having a memorial party for Alyssa and I would love to have her come and meet her friends in person. She was so ecstatic that her parents said yes, so she came in to visit and the whole week other than the party was spent with all of Alyssa's besties. I even took her to Pink, Alyssa's favorite store, and sent a package of many of Alyssa's clothes to her.
The thank-you/memorial party for Alyssa was the third week of July. Steve rented the tent, had it catered, invited all our neighbors and friends, and friends from school and anyone else who knew Alyssa well, and we had a great day. She hopefully was looking down to watch how many people came to celebrate her. In addition, the recipient of her lungs, Cindy (and her husband Carl) came in and all the kids were so excited to meet and hug her - it was as if she were the guest of honor. She is still doing great and now has Alyssa's energy. Unfortunately, I never heard back from the liver or cornea recipients after writing to them, yet I'm still hopeful one day they will reach out.
I feel this has been one of my best summers in years, except for all the grief I have over Alyssa. I'm generally feeling much better and taking fewer pills, which makes me feel clear-minded again. I have tried to be more active and have taken many walks at Independence Grove. I have been to Ravinia with my neighbors to celebrate a birthday and we saw some oldies - the Righteous Brothers, the Beach Boys, and a guest appearance by John Stamos - and we all had a blast eating, drinking, and singing along. Last night I saw Tony Bennett at Ravinia and his voice sounds just as good as it did 30-40 years ago. On Sept. 14 I'll see the Gypsy Kings, and later in October UB40. I went to Arlington Park Race Track last weekend and was finally a winner - not a big winner of course but I came home with money. Lori Pritchett and Dave were also winners that day.
I recently met up with old friends from Lutheran General Hospital. I stopped working there in '08 or '09 and rarely talked with them until now. We had a private room for four hours for lunch in town, and there was so much to talk about from our days of working together - we laughed so hard. Our next group will be even larger as others heard about our get-together and want to come. That will be in late October.
From 9/30-10/7 I will be visiting with my bestie and staying at a beachfront condo near Clearwater. Hopefully the red tide will not have moved that far north because if so, due my immunosuppression, I will have to back out. I really hope that won't happen.
Still trying to get a group of college friends together as everyone has been busy with one thing or another as their kids get older. Some are grandmas, one has a daughter who just got married, and most of my friends work. You'd think life would get easier but it just gets busier.
I did see my relatives twice over the summer yet the only one who has come to my home is my Aunt Mary. Uncle Lou, who is now 88, finally got a set of hearing aids and is doing well after his valve replacement. My Aunt Winnie, on the other hand, lives with chronic pain and sciatica and recently was in the hospital for six days because her kidney levels were very elevated. Upon doing MRI scans, they found small cysts. They will repeat the scan in six months rather than doing anything at the present time.
I did the 23andMe DNA test to figure out my heritage and I'm waiting to get my report. I also did the health portion as they will look at my DNA among others in my ancestry to find common health problems. It appears two of my dad's siblings (out of five) had VHL, and possibly one more yet no autopsy was done. One died at age 61 of VHL, and the other, an aunt, was 67 when she was diagnosed with it and is now about 75. Her tumors are unchanged and she has not required surgery her entire life. The only areas affected are her brain and one kidney tumor. This goes to show not everybody gets the same strain of VHL. My family, though, was hit extremely hard, and no one got it to the degree that I have.
Aunt Rita, my dad's closest sister when growing up, called me several weeks ago and we talked for 4.5 hours. She and her husband used to double date with my mom and dad. She told me my dad was always in trouble trying to do pranks and joke around but he was very brilliant. He graduated high school in three years and went on to be an engineer. He and my mother had four kids prior to his death, which, sadly enough, would not have even occurred if he was 20 years older because they had no steroids available at that time to treat brain swelling.
We also talked about how my mom never spoke of my dad after he died, which is why I know very little about him. She got remarried 1.5 years later and I almost never heard his name again. We rarely got together with his side of the family and my mother always said they wanted nothing to do with us because we carried the disease. But, it turns out they thought she moved on in her life and wanted to break ties with them. So, I missed out on getting to know a lot of my cousins, aunts, and uncles. I'm hoping to get together this fall to hear more family stories, and they are putting together a family tree for that side of the family.
Tyler is still working at the gaming company and absolutely loves his job. He is still with his girlfriend Lindsey and I am so blessed because they include me a lot when they do things, and now with Alyssa gone he is my everything. Steve is still with his same sales company yet his territory will change in October from WI and MN to WI and Chicago. In the last three years he put 130,000 miles on his car, so it is a good thing that he won't have to drive as far. He continues to have the most difficulty with the loss of Alyssa, though.
I look forward to my grief group restarting next month and I'm seeing a therapist and working through a lifetime a how my health has affected me and others around me and learning how to possibly deal better with that.
In my last grief group session, I was telling them how hard it was to be blind and not able to see Alyssa in photos, videos, etc., but every night I dream of her. She is always with all of my family who has passed away years ago, yet I'm there watching it all, too, and occasionally Tyler and my brother Jeff are there. In my dreams, everybody looks great, and Alyssa looks about 9 or 10 because I've never seen her older than that. Maybe that's why I like to sleep.
A few nights ago I had a dream my mom knocked and opened the door and said she had a surprise for me - it was Alyssa. She said Alyssa had to get away for a while from the fighting but she's not really dead. It was like she never left, and it was so emotional. I woke up because my phone rang but I wanted more. The grief group told me they think I lost my earthly vision but I have heavenly vision because nobody they know dreams like I do.
I'm sad to see the weather changing and Tyler tells me the leaves are changing, too. I hope this is not a sign of an early fall because I hate winter. My sister is working now so visiting her in Florida will be harder because I'd mostly be home alone if I stayed with her.
Nevertheless, now that I'm feeling better, I'm planning to start enjoying my life more and traveling more. I just feel like this is the time.
Hoping that you all had as nice of a summer as I did. I have to say it's hard for me to see all of you sending your kids to school, and I think of Alyssa when I hear the bus go by, but I'm very happy for you. Wonder if CBD will work for grief?
Hoping we have a late fall and very mild winter, and always hoping to see all my friends, including those who are far away.
First of all, I had a headache that lasted from February through the end of June and I was very concerned that the brain tumor I had was growing. I ended up getting a full set of MRI scans of my head and spine and learned everything was unchanged. Then, about 10 days after starting the oil, I realized I hadn't had a headache in a couple days. At first I thought no way, it had to be coincidental, but then it caused my pain to decrease where I didn't feel I even needed any pain pills any longer. Since that point, I have stopped taking pain medication altogether. It's so amazing. I even had a recurring pain in my back that went away when I took the oil.
I was hoping that my glaucoma pressure would also go down as it has not been normal in about 10 years. I went to see the eye doctor a week ago and it is now normal, but he still wants me to continue the prescribed drops a little bit longer to make sure it remains that way. Unfortunately, when I asked what the odds are of ever seeing again, he said there would be a 0% chance in my lifetime with technology as it is now, so it would have to be miracle from above.
Another incredible effect has been my blood pressure. Most kidney patients have chronic hypertension, but since starting CBD, my pressure has significantly dropped into the normal range. About a month ago the doctor cut my blood pressure pill dose in half, and today she stopped it altogether. I'm going to monitor it for two weeks to make sure it doesn't rebound up again.
As for the ultrasound for my thyroid gland, I was found to have two cysts and they are both cystic and require no treatment, which was a relief. My mammogram was perfect.
I had a six-month follow-up MRI of my abdomen and chest x-ray to make sure no cancer had spread when they removed my left kidney (there was cancer in the fat around it prior to removal), and everything was fine. I am now at 18 months but I'll need scans every six months for five years because I'm still at high risk for metastasis.
I need to do a colonoscopy on the 24th because I'm having a lot of digestive issues and lost six pounds, and I don't know why I'm losing weight. My pancreatic cysts continue to enlarge and sometimes go back down a little on their own, but I will definitely remove the fluid the next time they get big because they cause pressure.
My skin still has the crawling feeling and I'm taking new medication for it, but it remains bumpy and discolored, especially on my arms. I saw the skin doctor about three weeks ago and they did three biopsies, but I was happy to know this was the first time it did not require Mohs surgery. So, the CBD oil is also a possible anti-cancer treatment. It's been so good for me that people see my results and 20 of my friends/family have now ordered the oil.
Other than that, I've had quite a bit of insomnia, and fatigue as a result. Perhaps it has some thing to do with menopause.
On a better note, I've had an awesome summer. I visited my sister Robin in Florida from May 15 through the beginning of June, where I was able to see her daughter Taylor graduate from high school. She is now in college in Pennsylvania.
Although the weather was very uncooperative due to rain, we were all able to enjoy our time together. I learned some new dance moves from the girls - the dab and the nae-nae - and I learned how to twerk. It was a lot of fun seeing how these kids learned to rap.
We went to several restaurants, one in the middle of the woods and surrounded by a waterway with boats going by while you are eating. It was like I was on safari in the middle of the wildlife. We went to Sharky's, named because the pier connected to the restaurant happens to be the #1 place to catch sharks in Florida. After eating we walked out to talk to some men about how they really catch shark off of the pier. They're up about three-stories high and they said when they feel one, they pull it in and have a net at the bottom that catches it, and they drag it to shore. They catch about 3-4 sharks a day off this pier, which freaks me out because I used to swim at this beach. Now with the red tide, I hear this beach has about three dead sharks washing up on shore daily, among other fish.
My sister also took me to a drum circle, which is basically a large group of people, most not knowing each other, who come together a couple times a week on the beach and play their drums. Once one starts a rhythm, the next joins in and on and on, and eventually it's almost as if they planned it to have a certain rhythm. People dance like freedom dancers, spinning with their arms out. Then, at sundown, they play conch shells for about five minutes as the sun sets behind the water. Without sight, it felt like a very spiritually connected moment.
We went to the beach one day for about 20 minutes. I never took off my cover-up because a big black cloud opened up above us and ruined my only day at the beach. I think I will wait for rainy season to end before I return.
Next, I traveled to my brother Jeff's home in Golden, CO, outside of Boulder, and was there for 10 days. What a totally different experience it was after Florida. We were out every day canoeing, hiking, rafting, picnicking, touring Boulder and Denver, and saw many street musicians and homeless people, while absorbing the smell of pot. The people there seemed very into nature and very outdoorsy. There is just so much wildlife everywhere.
I had a blast with my nieces Emma (14) and Makena (8) and my nephew Anthony (16), and finally had some great visiting time with my brother. Sheila joined us for the last five days and we all went whitewater rafting and canoeing, hiked to a waterfall, shopped, and enjoyed a carriage ride and hotel night in downtown Boulder. Cindy was traveling with some friends but she was able to spend one day with us.
I realized how much Emma really missed Alyssa as she was displayed all over her room and she still sleeps with the blanket Alyssa gave her and keeps in touch with all Alyssa's friends on Instagram. I mentioned we were going to be having a memorial party for Alyssa and I would love to have her come and meet her friends in person. She was so ecstatic that her parents said yes, so she came in to visit and the whole week other than the party was spent with all of Alyssa's besties. I even took her to Pink, Alyssa's favorite store, and sent a package of many of Alyssa's clothes to her.
The thank-you/memorial party for Alyssa was the third week of July. Steve rented the tent, had it catered, invited all our neighbors and friends, and friends from school and anyone else who knew Alyssa well, and we had a great day. She hopefully was looking down to watch how many people came to celebrate her. In addition, the recipient of her lungs, Cindy (and her husband Carl) came in and all the kids were so excited to meet and hug her - it was as if she were the guest of honor. She is still doing great and now has Alyssa's energy. Unfortunately, I never heard back from the liver or cornea recipients after writing to them, yet I'm still hopeful one day they will reach out.
I feel this has been one of my best summers in years, except for all the grief I have over Alyssa. I'm generally feeling much better and taking fewer pills, which makes me feel clear-minded again. I have tried to be more active and have taken many walks at Independence Grove. I have been to Ravinia with my neighbors to celebrate a birthday and we saw some oldies - the Righteous Brothers, the Beach Boys, and a guest appearance by John Stamos - and we all had a blast eating, drinking, and singing along. Last night I saw Tony Bennett at Ravinia and his voice sounds just as good as it did 30-40 years ago. On Sept. 14 I'll see the Gypsy Kings, and later in October UB40. I went to Arlington Park Race Track last weekend and was finally a winner - not a big winner of course but I came home with money. Lori Pritchett and Dave were also winners that day.
I recently met up with old friends from Lutheran General Hospital. I stopped working there in '08 or '09 and rarely talked with them until now. We had a private room for four hours for lunch in town, and there was so much to talk about from our days of working together - we laughed so hard. Our next group will be even larger as others heard about our get-together and want to come. That will be in late October.
From 9/30-10/7 I will be visiting with my bestie and staying at a beachfront condo near Clearwater. Hopefully the red tide will not have moved that far north because if so, due my immunosuppression, I will have to back out. I really hope that won't happen.
Still trying to get a group of college friends together as everyone has been busy with one thing or another as their kids get older. Some are grandmas, one has a daughter who just got married, and most of my friends work. You'd think life would get easier but it just gets busier.
I did the 23andMe DNA test to figure out my heritage and I'm waiting to get my report. I also did the health portion as they will look at my DNA among others in my ancestry to find common health problems. It appears two of my dad's siblings (out of five) had VHL, and possibly one more yet no autopsy was done. One died at age 61 of VHL, and the other, an aunt, was 67 when she was diagnosed with it and is now about 75. Her tumors are unchanged and she has not required surgery her entire life. The only areas affected are her brain and one kidney tumor. This goes to show not everybody gets the same strain of VHL. My family, though, was hit extremely hard, and no one got it to the degree that I have.
Aunt Rita, my dad's closest sister when growing up, called me several weeks ago and we talked for 4.5 hours. She and her husband used to double date with my mom and dad. She told me my dad was always in trouble trying to do pranks and joke around but he was very brilliant. He graduated high school in three years and went on to be an engineer. He and my mother had four kids prior to his death, which, sadly enough, would not have even occurred if he was 20 years older because they had no steroids available at that time to treat brain swelling.
We also talked about how my mom never spoke of my dad after he died, which is why I know very little about him. She got remarried 1.5 years later and I almost never heard his name again. We rarely got together with his side of the family and my mother always said they wanted nothing to do with us because we carried the disease. But, it turns out they thought she moved on in her life and wanted to break ties with them. So, I missed out on getting to know a lot of my cousins, aunts, and uncles. I'm hoping to get together this fall to hear more family stories, and they are putting together a family tree for that side of the family.
Tyler is still working at the gaming company and absolutely loves his job. He is still with his girlfriend Lindsey and I am so blessed because they include me a lot when they do things, and now with Alyssa gone he is my everything. Steve is still with his same sales company yet his territory will change in October from WI and MN to WI and Chicago. In the last three years he put 130,000 miles on his car, so it is a good thing that he won't have to drive as far. He continues to have the most difficulty with the loss of Alyssa, though.
I look forward to my grief group restarting next month and I'm seeing a therapist and working through a lifetime a how my health has affected me and others around me and learning how to possibly deal better with that.
In my last grief group session, I was telling them how hard it was to be blind and not able to see Alyssa in photos, videos, etc., but every night I dream of her. She is always with all of my family who has passed away years ago, yet I'm there watching it all, too, and occasionally Tyler and my brother Jeff are there. In my dreams, everybody looks great, and Alyssa looks about 9 or 10 because I've never seen her older than that. Maybe that's why I like to sleep.
A few nights ago I had a dream my mom knocked and opened the door and said she had a surprise for me - it was Alyssa. She said Alyssa had to get away for a while from the fighting but she's not really dead. It was like she never left, and it was so emotional. I woke up because my phone rang but I wanted more. The grief group told me they think I lost my earthly vision but I have heavenly vision because nobody they know dreams like I do.
I'm sad to see the weather changing and Tyler tells me the leaves are changing, too. I hope this is not a sign of an early fall because I hate winter. My sister is working now so visiting her in Florida will be harder because I'd mostly be home alone if I stayed with her.
Nevertheless, now that I'm feeling better, I'm planning to start enjoying my life more and traveling more. I just feel like this is the time.
Hoping that you all had as nice of a summer as I did. I have to say it's hard for me to see all of you sending your kids to school, and I think of Alyssa when I hear the bus go by, but I'm very happy for you. Wonder if CBD will work for grief?
Hoping we have a late fall and very mild winter, and always hoping to see all my friends, including those who are far away.
Tuesday, April 24, 2018
I Know Alyssa Has Earned Her Wings
"Sprinter" (spring/winter) has finally ended and it seems spring is finally here. On top of having all of the additional stress this past year, I think I may have had a touch of seasonal affective disorder (SAD), as today was beautiful, sunny and 60 degrees, and I already feel a change mentally and physically - it totally makes me feel so much better.
These last few months have been exciting as I heard back from the recipient of Alyssa's lungs and her name is Cindy. We set up a meeting date in February where she and her husband Carl came over for lunch with our family. It was such an emotional meeting and I instantly felt that between hearing her letters and meeting her, that she was without a doubt the person who was supposed to receive these lungs.
Coincidentally, she and Carl lived in Libertyville for 40 years. He was a PE teacher at Libertyville High School, where our kids went, and also coached three sports. He still comes to town and recognizes many of his old students, and still gets his hair cut at the Libertyville barber shop.
Even crazier, her husband and I have a mutual friend named Lester who owns Sports 11, a shop where everybody gets all their Libertyville HS sports equipment and t-shirts. Carl and Cindy have known Lester and his wife for the past 30+ years. The coincidence is when Alyssa was a toddler, she developed a liking for Lester. We would visit him at least once a week, and he'd treat her like his little grandchild and give her a soccer ball, t-shirt, etc. When she was age 4, 5, and 6, our family was invited to Austin (a restaurant in town) where Lester rented out the entire facility and paid for all the food, drinks, prizes, etc. for the friends who came to join him. Those three years that we were there, so were Carl and Cindy. We were probably sitting no more than 2 or 3 tables apart.
I find it so amazing when I think that one year after the third party we attended, Cindy was just starting to feel a bit ill with her respiratory condition. Who would have ever guessed it would be my daughter who would save her life. After I met her, Robin posted the whole story on Facebook, including Cindy's 180-degree turn that allowed her to meet her eight grandchildren. She was never able to meet them before because she was at high-risk for developing illness and was house-bound on oxygen for eight years. During our visit, we listened to her lungs through a stethoscope, and because Cindy is about the same size as Alyssa was, when we hugged her goodbye, it was as if we were hugging Alyssa goodbye.
I have yet to hear back from the recipient of Alyssa's liver but recently got a call from the eye bank. They were able to use both of her corneas for transplant. The young girl who received one of them lives about an hour south of me. They believe she was totally blind and now has the ability to see. The gentleman who received the other cornea was 66 years old and from Chicago. I would like to meet both of them. This week I will be writing them and signing a waiver so if they want to contact me, the process won't take so long. Uniting with The Gift of Life (organ donation) recipients took a whole year.
Sadly enough, Alyssa's best match of all was a woman from NY in her 50s, who was waiting for a heart while on a heart/lung machine. When she got it, everything took fine, but she developed an infection with all the autoimmune drugs you need to take and the doctors were not able to get rid of it. She unfortunately passed away 3.5 months later. I wanted to meet her so bad. Also, Alyssa's intestines were donated to a young man but rejected immediately so they put him back on the list. Before this, I didn't even know they could transplant intestines.
February was a very blue month as it was the anniversary of Alyssa's death on the 27th, although we felt it was really the 25th when she went to Condell, because within the first five hours, she was already brain dead.
On the 27th, as a family, we planned to go to the school after dismissal to meet at her swing and release balloons, and then to Culver's in the evening, which was the place she frequented with friends after a lot of her dance events and other special occasions. When we got there, there were shifts of kids showing up - about 40 in all - who were throwing balloons up and sharing stories about Alyssa. I felt like she had such close friends, I wanted to give them something as a reminder of things they used to do together. One being, we used to always make pretzel rings with Hershey's Kisses and M&Ms, and she also found it so much fun to mix regular Jelly Bellies with BeanBoozled Jelly Bellies that taste silly like grass, toothpaste, dirty socks, dog food, etc. So I made up goodie bags for all the kids. They each took turns eating one Jelly Belly and it was funny to see if it was a good one or bad one.
If the month wasn't blue enough already, it became worse when I found out I needed Mohs surgery on the top of my foot and on my bottom lip. I was shocked to see that I lost 2/3 of my bottom lip to cancer, and then had to go to a plastic surgeon who pulled the inner lining of my lip over the top and sutured it down so that I wouldn't have an inverted lip when it healed. In addition, I had a deep, silver-dollar-sized Mohs surgery on the top of my foot. The plastic surgeon closed it with an incision from my ankle to my middle toe so he could pull my skin from every direction and close up that hole. I was told not to walk on it for three weeks because if it tore open, I would have needed a graft on the top of my foot. I must say, after all the pain in my lip and foot, both have healed so well that most people can't even tell I had the surgery.
Speaking of health, I finally got a reprieve where I don't need to see my skin doctor for three months, my eye doctor for three months, my kidney doctor for three months, and my neurologist for about six months. Here's the summary:
Kidney: My creatinine is 1.6 (better than last time) and I've had just one more infection.
Eye: The doctor decided not to do anything - no injection or draining - basically because he thinks I'm done.
Neurologically: They noticed I'm a little more off balance and I've had three tumors get slightly bigger in my head, but if they wanted to do surgery, they wouldn't know which of the three to take, so instead they will wait and do a scan in November unless more symptoms appear before then.
Headaches: I have had headaches now for about six weeks - I can't get rid of them. They told me that looking at my brain, I'm a person who is probably going to have headaches forever because of all the surgeries, the few tumors still in there, and pressure changes from the weather and fluid retention. Now that spring is here, I'm hoping it gets better.
Skin: They started me on a drug to decrease sensation to my nerve endings because when I discuss my itching and crawling feeling under my skin, they feel it's related to my nerves. It has been working so far. It comes with a lot of side effects, the biggest one being fatigue, but I'd rather be more tired than having to deal with scratching all over. I'm taking fewer pills now, too.
Pancreas: My pancreas fluid is coming back and I'll need to get that drained again. I wish they could just seal it off.
Thyroid: On Wednesday I'm getting an ultrasound on my thyroid nodule, which I've had for the last four months but was not told about it until last week. Say your prayers and wish me luck! There are no symptoms with these and 80% of them are benign. I'll also get a mammogram that day.
Since my niece Taylor is graduating high school on May 17, I thought I deserved a trip to Florida to see that. I'm leaving May 13th and returning on the 27th. I'm looking forward to the warm weather and getting to visit with Robin and her family again.
My cousin Wendy had her baby girl who is healthy and I'm excited to meet her. She is probably six weeks old now.
My uncle Lou, who is 88 and was given a year to live 2.5 years ago, suddenly gained about 25 pounds and suffered shortness of breath and was rushed to the hospital, where he stayed for 22 days. They did surgery on his heart and put in a pacemaker, and now he can walk .5 mile per day with no problem. He and Winnie will celebrate their 60th wedding anniversary in June with a big family party.
As Lou was checking out of the hospital, my cousin Stacey had a gallbladder attack and stayed in the hospital for several days after they removed it. A week after discharge, she found herself having the same pain and she ended up having gallstones in her bile duct. Now she's fine and back to work. It was a crazy month for that side of the family.
Also during the winter months, we attended the first annual reception for donors and recipients of kidney transplants held at the University of Chicago. All the patients who had received a kidney in the past 1.5 years were invited to the luncheon, as well as their donors, surgeons, nurses, post-transplant teams, etc. There were well over 100 people. My donor Maureen was asked to speak and it was special because she talked about my story. Awards were given to all the donors and a photographer took photos. At my table it was me, Tyler, Lindsey, Suzanne, Maureen, and her husband Tom.
For some exciting news, Tyler started a new job in February. He works for Gold Rush Gaming as a marketing coordinator. He follows accounts that have casino games in them - restaurants, bowling alleys, sports bars, etc. - and comes up with monthly promotions for them. He bought a sporty new Jeep Cherokee, which he loves as he spends quite a lot of time in his car. He is still dating Lindsey, who has recently started her Master's at Northwestern to go along with her social work and psychology degrees.
Steve is still in sales and but also still dealing with the loss of Alyssa. Last week he was saying if there were two things he could change in his life, it would be if his wife wasn't blind and his daughter didn't pass away. He is fixing up our old van for his sister.
I, myself, have been in a grief group through The Chapel and have been finding it very helpful in discussing how we all grieve differently, and looking at healthy ways to cope along with the religious focus that is comforting to help with any loss. My session ends in three weeks, so after that, I plan to possibly find a therapist or somebody else to talk to who deals in this field.
I'm looking forward to a relaxing, uneventful spring and summer, but also to doing some more traveling. In addition to my sister in May, I want to go see my brother sometime between June and August.
Many thanks to all of my friends for all of their support and much needed friendship over this past year. Now that my doctor appointments are lessening, it will be nice to be able to do more fun things with friends. Recently I've been to dinners, lunches, book clubs, the movies, and I saw Jay Leno perform and went to the Chicago Improv for stand-up comedy. I'm looking forward to going to Ravinia for concerts this summer, and I've got tickets to see Elton John in February of next year. I'm also looking forward to getting together with my sorority sisters for our yearly day at the track, dinner out, and maybe even the polo tournament that we talk about every year.
I've also decided I really do want to write a book so now I need to figure out an outline for it. I think it will be therapeutic.
Wishing you all a happy spring!
These last few months have been exciting as I heard back from the recipient of Alyssa's lungs and her name is Cindy. We set up a meeting date in February where she and her husband Carl came over for lunch with our family. It was such an emotional meeting and I instantly felt that between hearing her letters and meeting her, that she was without a doubt the person who was supposed to receive these lungs.
Cindy & Carl
Coincidentally, she and Carl lived in Libertyville for 40 years. He was a PE teacher at Libertyville High School, where our kids went, and also coached three sports. He still comes to town and recognizes many of his old students, and still gets his hair cut at the Libertyville barber shop.
Even crazier, her husband and I have a mutual friend named Lester who owns Sports 11, a shop where everybody gets all their Libertyville HS sports equipment and t-shirts. Carl and Cindy have known Lester and his wife for the past 30+ years. The coincidence is when Alyssa was a toddler, she developed a liking for Lester. We would visit him at least once a week, and he'd treat her like his little grandchild and give her a soccer ball, t-shirt, etc. When she was age 4, 5, and 6, our family was invited to Austin (a restaurant in town) where Lester rented out the entire facility and paid for all the food, drinks, prizes, etc. for the friends who came to join him. Those three years that we were there, so were Carl and Cindy. We were probably sitting no more than 2 or 3 tables apart.
I find it so amazing when I think that one year after the third party we attended, Cindy was just starting to feel a bit ill with her respiratory condition. Who would have ever guessed it would be my daughter who would save her life. After I met her, Robin posted the whole story on Facebook, including Cindy's 180-degree turn that allowed her to meet her eight grandchildren. She was never able to meet them before because she was at high-risk for developing illness and was house-bound on oxygen for eight years. During our visit, we listened to her lungs through a stethoscope, and because Cindy is about the same size as Alyssa was, when we hugged her goodbye, it was as if we were hugging Alyssa goodbye.
I have yet to hear back from the recipient of Alyssa's liver but recently got a call from the eye bank. They were able to use both of her corneas for transplant. The young girl who received one of them lives about an hour south of me. They believe she was totally blind and now has the ability to see. The gentleman who received the other cornea was 66 years old and from Chicago. I would like to meet both of them. This week I will be writing them and signing a waiver so if they want to contact me, the process won't take so long. Uniting with The Gift of Life (organ donation) recipients took a whole year.
Sadly enough, Alyssa's best match of all was a woman from NY in her 50s, who was waiting for a heart while on a heart/lung machine. When she got it, everything took fine, but she developed an infection with all the autoimmune drugs you need to take and the doctors were not able to get rid of it. She unfortunately passed away 3.5 months later. I wanted to meet her so bad. Also, Alyssa's intestines were donated to a young man but rejected immediately so they put him back on the list. Before this, I didn't even know they could transplant intestines.
February was a very blue month as it was the anniversary of Alyssa's death on the 27th, although we felt it was really the 25th when she went to Condell, because within the first five hours, she was already brain dead.
On the 27th, as a family, we planned to go to the school after dismissal to meet at her swing and release balloons, and then to Culver's in the evening, which was the place she frequented with friends after a lot of her dance events and other special occasions. When we got there, there were shifts of kids showing up - about 40 in all - who were throwing balloons up and sharing stories about Alyssa. I felt like she had such close friends, I wanted to give them something as a reminder of things they used to do together. One being, we used to always make pretzel rings with Hershey's Kisses and M&Ms, and she also found it so much fun to mix regular Jelly Bellies with BeanBoozled Jelly Bellies that taste silly like grass, toothpaste, dirty socks, dog food, etc. So I made up goodie bags for all the kids. They each took turns eating one Jelly Belly and it was funny to see if it was a good one or bad one.
If the month wasn't blue enough already, it became worse when I found out I needed Mohs surgery on the top of my foot and on my bottom lip. I was shocked to see that I lost 2/3 of my bottom lip to cancer, and then had to go to a plastic surgeon who pulled the inner lining of my lip over the top and sutured it down so that I wouldn't have an inverted lip when it healed. In addition, I had a deep, silver-dollar-sized Mohs surgery on the top of my foot. The plastic surgeon closed it with an incision from my ankle to my middle toe so he could pull my skin from every direction and close up that hole. I was told not to walk on it for three weeks because if it tore open, I would have needed a graft on the top of my foot. I must say, after all the pain in my lip and foot, both have healed so well that most people can't even tell I had the surgery.
Speaking of health, I finally got a reprieve where I don't need to see my skin doctor for three months, my eye doctor for three months, my kidney doctor for three months, and my neurologist for about six months. Here's the summary:
Kidney: My creatinine is 1.6 (better than last time) and I've had just one more infection.
Eye: The doctor decided not to do anything - no injection or draining - basically because he thinks I'm done.
Neurologically: They noticed I'm a little more off balance and I've had three tumors get slightly bigger in my head, but if they wanted to do surgery, they wouldn't know which of the three to take, so instead they will wait and do a scan in November unless more symptoms appear before then.
Headaches: I have had headaches now for about six weeks - I can't get rid of them. They told me that looking at my brain, I'm a person who is probably going to have headaches forever because of all the surgeries, the few tumors still in there, and pressure changes from the weather and fluid retention. Now that spring is here, I'm hoping it gets better.
Skin: They started me on a drug to decrease sensation to my nerve endings because when I discuss my itching and crawling feeling under my skin, they feel it's related to my nerves. It has been working so far. It comes with a lot of side effects, the biggest one being fatigue, but I'd rather be more tired than having to deal with scratching all over. I'm taking fewer pills now, too.
Pancreas: My pancreas fluid is coming back and I'll need to get that drained again. I wish they could just seal it off.
Thyroid: On Wednesday I'm getting an ultrasound on my thyroid nodule, which I've had for the last four months but was not told about it until last week. Say your prayers and wish me luck! There are no symptoms with these and 80% of them are benign. I'll also get a mammogram that day.
Since my niece Taylor is graduating high school on May 17, I thought I deserved a trip to Florida to see that. I'm leaving May 13th and returning on the 27th. I'm looking forward to the warm weather and getting to visit with Robin and her family again.
My cousin Wendy had her baby girl who is healthy and I'm excited to meet her. She is probably six weeks old now.
My uncle Lou, who is 88 and was given a year to live 2.5 years ago, suddenly gained about 25 pounds and suffered shortness of breath and was rushed to the hospital, where he stayed for 22 days. They did surgery on his heart and put in a pacemaker, and now he can walk .5 mile per day with no problem. He and Winnie will celebrate their 60th wedding anniversary in June with a big family party.
As Lou was checking out of the hospital, my cousin Stacey had a gallbladder attack and stayed in the hospital for several days after they removed it. A week after discharge, she found herself having the same pain and she ended up having gallstones in her bile duct. Now she's fine and back to work. It was a crazy month for that side of the family.
Also during the winter months, we attended the first annual reception for donors and recipients of kidney transplants held at the University of Chicago. All the patients who had received a kidney in the past 1.5 years were invited to the luncheon, as well as their donors, surgeons, nurses, post-transplant teams, etc. There were well over 100 people. My donor Maureen was asked to speak and it was special because she talked about my story. Awards were given to all the donors and a photographer took photos. At my table it was me, Tyler, Lindsey, Suzanne, Maureen, and her husband Tom.
Steve is still in sales and but also still dealing with the loss of Alyssa. Last week he was saying if there were two things he could change in his life, it would be if his wife wasn't blind and his daughter didn't pass away. He is fixing up our old van for his sister.
I, myself, have been in a grief group through The Chapel and have been finding it very helpful in discussing how we all grieve differently, and looking at healthy ways to cope along with the religious focus that is comforting to help with any loss. My session ends in three weeks, so after that, I plan to possibly find a therapist or somebody else to talk to who deals in this field.
I'm looking forward to a relaxing, uneventful spring and summer, but also to doing some more traveling. In addition to my sister in May, I want to go see my brother sometime between June and August.
Many thanks to all of my friends for all of their support and much needed friendship over this past year. Now that my doctor appointments are lessening, it will be nice to be able to do more fun things with friends. Recently I've been to dinners, lunches, book clubs, the movies, and I saw Jay Leno perform and went to the Chicago Improv for stand-up comedy. I'm looking forward to going to Ravinia for concerts this summer, and I've got tickets to see Elton John in February of next year. I'm also looking forward to getting together with my sorority sisters for our yearly day at the track, dinner out, and maybe even the polo tournament that we talk about every year.
I've also decided I really do want to write a book so now I need to figure out an outline for it. I think it will be therapeutic.
Wishing you all a happy spring!
From Angela and Ron for our memorial garden...
...and another for our wall (with raised lettering for me)
From Tyler's friend, this rose from Ecuador will open and close for seven years
Also thankful for a handmade bracelet from Maui with a cross and purple beads
Sunday, January 7, 2018
Holiday Cheers! Only Read This When You Have Time for a Pot of Your Favorite Hot Beverage - LOL
I was so happy to welcome in January 1st of 2018. Let's just say 2017 goes down as one of the worst years. Let's start with some of my good memories since my last post.
Sheila and Barry came in town for a trip that overlapped with a longer visit from my good old friend from London, Michele. It was fun jumping back in time, giggling about the good old days and all the fun we had, and enjoying a concert and the city of Chicago for four days. It was so nice to be in the city without going to a doctor appointment, as we enjoyed shopping, eating, Starbucks, live entertainment, a boat ride, and even a piano bar. I felt so much more alive and young again, as being with these friends brought me back to my 20s. Michele was also very helpful in helping me organize my home as well as shopping for new bedding and home accents. She and I laughed at the fact that she introduced me to my husband and I introduced her to her ex-husband, who we saw at his Chicago restaurant.
The fun didn't stop there. Two weeks later I went back in the city for another weekend as my Aunt Jan and Uncle Jim were in from Texas to celebrate their 50th anniversary. It was a great evening in a VIP hotel room some 20 stories up with a terrace view of Lake Michigan. It was great to see all my family and cousins who traveled so far. After that party we continued to another hotel where we all went to another party until 3:30 a.m. I didn't realize I still had the stamina in me to party for so long!
The third week of November I went to Florida with Tyler to see my sister Robin in North Port. She lives about 10 minutes from the beach and across the street from a canal. She is the happiest I've seen her in years. She absolutely loves the weather and I could live down there myself in a heartbeat. Her home is just lovely with a 12' wrap-around porch and five acres of land. We went to the beach nearly every other day. Due to my skin cancer, I think I was the only one on the beach facing away from the ocean to avoid the direct sun. It is just so calming to hear the ocean waves and birds.
It was great to spent some quality, fun time with my nieces as well. I was fortunate enough to be in town when Taylor and Olivia performed in a dance show. Brittany also came down to visit from South Georgia. It was so good to see her, though unfortunately she and Taylor were sick that entire time, and were really not up for doing too much activity. It was also great to see my brother-in-law Jordan, as I rarely get to see him.
My favorite memories there were at an outdoor tiki bar with beach games and great tropical drinks. My new favorite drink is a key lime daiquiri. It has key lime liquor and coconut rum, and a splash of pina colada or pineapple juice. It was so good that I had four of them (over two visits).
In addition, since they live near a canal, we saw alligators, egrets, and pelicans almost every day, and yet we also heard roosters from her neighbor's farm. I think one day we counted 12 alligators -- and we're talking 12-14 feet long.
Tyler and I had a wonderful Thanksgiving at Robin's with a traditional meal. (Steve went to Michigan to be with his mom and brother.) A couple days later, we had another homemade Thanksgiving dinner at my cousin Debbie's beautiful ranch home in Ft. Meyers. Without sight, it felt to me very open and calming, and I could smell the flowers. She has an indoor pool with a Jacuzzi to boot, and a bar that converts to a poker/blackjack dealer station. Of course we could not leave without playing.
During our stay, the students were asked at the high school if they ever had an exchange student. Taylor raised her hand and the next thing we knew, Robin received an exchange student the day before Thanksgiving. Selena is from Denmark and is staying until the end of the school year in June.
The family is enjoying her and learning all about her culture. Selena is a junior in high school, which is perfect for Olivia (a junior) and Taylor (a senior). Due to the lack of a drinking age in Europe, she's been drinking since 12. She no longer likes tequila or vodka, and has been clubbing for the last two years. I feel like we are much more conservative here, but I'm happy my kids have lived a more conservative life. She also speaks six languages fluently, and has a bigger English vocabulary than Tyler!
Toward the end of our visit, I took a trip with Robin to Downtown Disney while Tyler and his friend Philip went to SeaWorld for the day.
I feel like Florida was the start of my birthday month because from Nov. 20 until Dec. 20, everything was about me. I've gotten together with several sorority sisters for birthdays and holidays. In the neighborhood, we've had several book club meetings and an end-of-year party, and as we celebrate our birthdays with each other, mine was at Wildfire. As a matter of fact, I had six meals out for my birthday in that week. I also went to three holiday parties and two Christmas gift exchanges in December.
Also over the holidays, Sheila and Barry flew in again as did Diana (Dee), and we all got together with Sheila M. and Dee's special surprise guest, who turned out to be another high school friend, Dorsey! We graduated together, her family lived down the street from me, and we used to go ice skating and sledding together.
Unfortunately I lost a dear college friend, Jeff, who passed away in December from a fast-growing brain tumor. His youngest kid is 20. It's so sad that he was such an alive, fun, active guy who died too young.
Hearing about the school year was rough. Everyone talked about Homecoming and drivers ed, and it hurts to think my daughter will never be able to experience these but I still want to hear about it. I'm happy for my friends and their kids but sad for me.
Oak Grove School had a lot of donations come in on behalf of Alyssa. They planted an abundance of trees/flowers in the junior high area and put in a purple bench swing, which seats about four little kids, and surrounded it with lilacs. They retired her locker and put her name on it. They put in a TV screen displaying student art and other works as Alyssa was very artistically talented. There is $2-3,000 in arts scholarship money that will be awarded in what would have been Alyssa's senior year (2021). In addition, there was a scrapbook composed of pages made by her teachers and classmates; they framed her last piece of art; they had Alyssa tee-shirts made up that are still being worn on the 27th of every month and on her birthday; and at graduation they had a rose on her chair and left an open spot for her on the stage, and they sang the Hallelujah song with the band. There are also two Instagram sites that the children have come up with to share their memories and photos and videos.
In addition to all the school has done, there was also a large group that donated to the VHL Family Alliance (www.vhl.org) in her memory. As a matter of fact, if you still want to donate in honor of Alyssa, they will post it in their newsletter.
At the end of September, I joined a grief support group that was run by The Chapel, a non-denominational church. I found this very helpful as it makes you feel like you're not alone. The ages I've seen there are between 18 and 72, which just goes to show you that grief can hit us all. Unfortunately, I only attended four or five of the meetings before the session ended. I will rejoin starting Jan. 21st.
Though it has been a difficult time grieving the loss of Alyssa, we are convinced there is something (Heaven) when you pass. We have had multiple signs that are reassuring and so comforting. Alyssa's spirit must be a strong one and when you combine that with my blindness, I think I am much more in tuned to my other senses. I have had multiple hellos from her (like a tap on the shoulder). I even had a little plaque fall off the refrigerator onto the floor, which none of us had ever seen before, that says:
I just feel this connection like she was there. Additionally, an unbelievable amount of cardinal birds are being seen by our family as well as everyone Alyssa knew. This really fueled Steve's bird watching interest. Also, one day when Steve was driving, he looked up and saw a cloud that looked like a winged angel and he started taking photos, and as he got underneath it, it looked like Alyssa's face and button nose. She had the cutest nose. I still have dreams of her almost nightly (last night we were swimming at an indoor pool with a slide and a bunny). My house feels like a shrine with angels, artwork, photos, and other things that remind us of her, yet I can't see any of them, and maybe that is why I keep seeing her in my dreams.
Back in April, the person who got Alyssa's lungs sent me a beautiful letter, including how her donation was a gift that was near and dear to their heart. I corresponded back six months later, on Alyssa's birthday, and I'm now waiting to hear if she is interested in meeting. I also wrote a letter to the family of the child who received her liver, who is doing great, and have not yet heard back from them. Alyssa would have been so happy to know that she was able to help others.
Alyssa's birthday, October 24th, was a tough day although it ended up being a better day than I'd thought as we were surrounded by many of our friends. We decided to have Alyssa's friends write out notes to her, which we printed out along with our notes to her, and then we released them with helium Mylar balloons as we sang Happy Birthday. We followed this by going to her favorite baked potato bar. Six families and friends of hers joined in the festivities. Everyone talked about memories of her and we were all able to laugh. Believe it or not, all 18 of us ordered a baked potato! Again, it was a very hard week as we all miss her very much.
As much as I was craving Christmas cookies in December, I made a lot of chocolate pretzel rings for friends. I used to make Christmas cookies with Alyssa and now that she is not here, I had to make something easier. I think it made me miss the cookies that much more.
The Christmas season overall was very blue as I only had to shop for Tyler for the most part, besides some other gifts, and it was unusual not to buy for Alyssa. On Christmas day, it was very awkward because all the presents under the tree were for Tyler except the one he purchased for me, so it felt very different as we normally took turns opening gifts.
When I first talked with Steve about what we should do for Christmas, he said he wasn't going to celebrate it this year. I told him we have another child that we need to celebrate and make new traditions with, but unfortunately he couldn't do it and pretty much stayed in Alyssa's room for the two days. However, he has been more flexible recently as end-of-year sales are slower, so he was able to travel to see his family and spend more time relaxing at home.
We were invited to spend Christmas Eve and Day with my family, yet even Tyler said it would be too hard to go so we ended up staying home. Instead, I think we watched like 20 holiday movies this season. We did go to church as a family, and we even exchanged gifts the day after Christmas. I got some beautiful sweaters and an adorable dress from Tyler, and Steve got me an iPhone 8 Plus and it came with an iPad Pro that is super fast.
The weather kind of goes with our mood. It has been extremely cold, dark, windy and depressing out, although we did have a white Christmas. The single-digit temperatures are no longer anything I want to deal with. I need to fly south like the birds.
Speaking of birds, we have about 100 in our backyard! It is like a bird sanctuary as Steve feeds them daily and has installed a heated birdbath. I don't know how the birds don't freeze up after a bath. We threw a bucket of water in the air and it turned to ice.
Regarding my health, I'm still experiencing eye pain and redness in addition to blood coming through on the iris. The doctor wants to try in a month to do an injection to absorb the blood. If that doesn't work, the only other option is to go in surgically to clean and irrigate the eye.
I had my kidney and lung scans that came out clear with no metastasis seen yet. I recently had an MRI with the brain and spine and will get the results on the 17th. The only difference I feel is I'm getting more headaches but it may be from stress, through I'm also feeling some imbalance when I'm not walking.
In September, I had Mohs surgery on my left upper lip, which was supposed to be the size of a dime and turned out silver-dollar sized. Luckily, the plastic surgeon afterward closed it in a way that it hid most of the scar in my smile line, though it was a very painful procedure. In addition, I had more freezing of precancerous skin areas.
I also went to a bladder specialist and I'm now on a regimen of antibiotics, probiotics and cranberry pills, yet I still managed to get two bladder infections and my creatinine level has now jumped from 1.6 to 1.8. When I received my kidney, it was 1.0, which indicates perfect function. Over 2 is the beginning of kidney failure. They don't know why my function is not a good and they say we just have to keep watching it. I myself attribute it to the bladder infections because there's nothing else I'm doing differently.
More fun times are ahead. I definitely plan on going down to Florida for another visit soon. Since Selena is in the spare room, I will probably wait until Jordan goes out of town for a couple weeks. In the meantime I may look into flights to Colorado to visit Jeff.
My 43-year-old cousin Wendy (Mary's daughter), is having a baby girl next month. I look forward to going to visit the baby and bringing a personal gift when she arrives.
I also got an invitation for a kidney donor/recipient reception at the University of Chicago. It's a celebration with food and speakers, and my donor is going to speak at it. Tyler, Lindsey, Suzanne and I are all going.
Suzanne continues to be my chief, getting me to most of my appointments with help from a few other friends, who give her a little bit of a break. I am thankful to all who have helped me and listened to my complaining and/or just lent an ear.
Again, we now realize just how much Alyssa was loved and will be missed. The overwhelming support from everybody has gone above and beyond what we would have expected, and we are just so appreciative.
Lastly, we were so excited about Tyler getting a job at an advertising firm, and though he learned a lot, it was only part time so he is now seeking full-time employment in the marketing/advertising industry. Please spread the word. I'd be happy to send you a resume. He is doing some marketing and social media work for another local business in the meantime.
Yipee! I'm so happy to ring in the new year in. 2018 has got to be better! I'm wishing you all a happy and healthy one as well.
Sheila and Barry came in town for a trip that overlapped with a longer visit from my good old friend from London, Michele. It was fun jumping back in time, giggling about the good old days and all the fun we had, and enjoying a concert and the city of Chicago for four days. It was so nice to be in the city without going to a doctor appointment, as we enjoyed shopping, eating, Starbucks, live entertainment, a boat ride, and even a piano bar. I felt so much more alive and young again, as being with these friends brought me back to my 20s. Michele was also very helpful in helping me organize my home as well as shopping for new bedding and home accents. She and I laughed at the fact that she introduced me to my husband and I introduced her to her ex-husband, who we saw at his Chicago restaurant.
The fun didn't stop there. Two weeks later I went back in the city for another weekend as my Aunt Jan and Uncle Jim were in from Texas to celebrate their 50th anniversary. It was a great evening in a VIP hotel room some 20 stories up with a terrace view of Lake Michigan. It was great to see all my family and cousins who traveled so far. After that party we continued to another hotel where we all went to another party until 3:30 a.m. I didn't realize I still had the stamina in me to party for so long!
The third week of November I went to Florida with Tyler to see my sister Robin in North Port. She lives about 10 minutes from the beach and across the street from a canal. She is the happiest I've seen her in years. She absolutely loves the weather and I could live down there myself in a heartbeat. Her home is just lovely with a 12' wrap-around porch and five acres of land. We went to the beach nearly every other day. Due to my skin cancer, I think I was the only one on the beach facing away from the ocean to avoid the direct sun. It is just so calming to hear the ocean waves and birds.
It was great to spent some quality, fun time with my nieces as well. I was fortunate enough to be in town when Taylor and Olivia performed in a dance show. Brittany also came down to visit from South Georgia. It was so good to see her, though unfortunately she and Taylor were sick that entire time, and were really not up for doing too much activity. It was also great to see my brother-in-law Jordan, as I rarely get to see him.
My favorite memories there were at an outdoor tiki bar with beach games and great tropical drinks. My new favorite drink is a key lime daiquiri. It has key lime liquor and coconut rum, and a splash of pina colada or pineapple juice. It was so good that I had four of them (over two visits).
In addition, since they live near a canal, we saw alligators, egrets, and pelicans almost every day, and yet we also heard roosters from her neighbor's farm. I think one day we counted 12 alligators -- and we're talking 12-14 feet long.
During our stay, the students were asked at the high school if they ever had an exchange student. Taylor raised her hand and the next thing we knew, Robin received an exchange student the day before Thanksgiving. Selena is from Denmark and is staying until the end of the school year in June.
The family is enjoying her and learning all about her culture. Selena is a junior in high school, which is perfect for Olivia (a junior) and Taylor (a senior). Due to the lack of a drinking age in Europe, she's been drinking since 12. She no longer likes tequila or vodka, and has been clubbing for the last two years. I feel like we are much more conservative here, but I'm happy my kids have lived a more conservative life. She also speaks six languages fluently, and has a bigger English vocabulary than Tyler!
Toward the end of our visit, I took a trip with Robin to Downtown Disney while Tyler and his friend Philip went to SeaWorld for the day.
I feel like Florida was the start of my birthday month because from Nov. 20 until Dec. 20, everything was about me. I've gotten together with several sorority sisters for birthdays and holidays. In the neighborhood, we've had several book club meetings and an end-of-year party, and as we celebrate our birthdays with each other, mine was at Wildfire. As a matter of fact, I had six meals out for my birthday in that week. I also went to three holiday parties and two Christmas gift exchanges in December.
Also over the holidays, Sheila and Barry flew in again as did Diana (Dee), and we all got together with Sheila M. and Dee's special surprise guest, who turned out to be another high school friend, Dorsey! We graduated together, her family lived down the street from me, and we used to go ice skating and sledding together.
Unfortunately I lost a dear college friend, Jeff, who passed away in December from a fast-growing brain tumor. His youngest kid is 20. It's so sad that he was such an alive, fun, active guy who died too young.
Oak Grove School had a lot of donations come in on behalf of Alyssa. They planted an abundance of trees/flowers in the junior high area and put in a purple bench swing, which seats about four little kids, and surrounded it with lilacs. They retired her locker and put her name on it. They put in a TV screen displaying student art and other works as Alyssa was very artistically talented. There is $2-3,000 in arts scholarship money that will be awarded in what would have been Alyssa's senior year (2021). In addition, there was a scrapbook composed of pages made by her teachers and classmates; they framed her last piece of art; they had Alyssa tee-shirts made up that are still being worn on the 27th of every month and on her birthday; and at graduation they had a rose on her chair and left an open spot for her on the stage, and they sang the Hallelujah song with the band. There are also two Instagram sites that the children have come up with to share their memories and photos and videos.
In addition to all the school has done, there was also a large group that donated to the VHL Family Alliance (www.vhl.org) in her memory. As a matter of fact, if you still want to donate in honor of Alyssa, they will post it in their newsletter.
At the end of September, I joined a grief support group that was run by The Chapel, a non-denominational church. I found this very helpful as it makes you feel like you're not alone. The ages I've seen there are between 18 and 72, which just goes to show you that grief can hit us all. Unfortunately, I only attended four or five of the meetings before the session ended. I will rejoin starting Jan. 21st.
Though it has been a difficult time grieving the loss of Alyssa, we are convinced there is something (Heaven) when you pass. We have had multiple signs that are reassuring and so comforting. Alyssa's spirit must be a strong one and when you combine that with my blindness, I think I am much more in tuned to my other senses. I have had multiple hellos from her (like a tap on the shoulder). I even had a little plaque fall off the refrigerator onto the floor, which none of us had ever seen before, that says:
My Mom
When I compare my mom
To other mothers that I see,
What a lucky kid I am
That she belongs to me!
I just feel this connection like she was there. Additionally, an unbelievable amount of cardinal birds are being seen by our family as well as everyone Alyssa knew. This really fueled Steve's bird watching interest. Also, one day when Steve was driving, he looked up and saw a cloud that looked like a winged angel and he started taking photos, and as he got underneath it, it looked like Alyssa's face and button nose. She had the cutest nose. I still have dreams of her almost nightly (last night we were swimming at an indoor pool with a slide and a bunny). My house feels like a shrine with angels, artwork, photos, and other things that remind us of her, yet I can't see any of them, and maybe that is why I keep seeing her in my dreams.
Back in April, the person who got Alyssa's lungs sent me a beautiful letter, including how her donation was a gift that was near and dear to their heart. I corresponded back six months later, on Alyssa's birthday, and I'm now waiting to hear if she is interested in meeting. I also wrote a letter to the family of the child who received her liver, who is doing great, and have not yet heard back from them. Alyssa would have been so happy to know that she was able to help others.
Alyssa's birthday, October 24th, was a tough day although it ended up being a better day than I'd thought as we were surrounded by many of our friends. We decided to have Alyssa's friends write out notes to her, which we printed out along with our notes to her, and then we released them with helium Mylar balloons as we sang Happy Birthday. We followed this by going to her favorite baked potato bar. Six families and friends of hers joined in the festivities. Everyone talked about memories of her and we were all able to laugh. Believe it or not, all 18 of us ordered a baked potato! Again, it was a very hard week as we all miss her very much.
As much as I was craving Christmas cookies in December, I made a lot of chocolate pretzel rings for friends. I used to make Christmas cookies with Alyssa and now that she is not here, I had to make something easier. I think it made me miss the cookies that much more.
The Christmas season overall was very blue as I only had to shop for Tyler for the most part, besides some other gifts, and it was unusual not to buy for Alyssa. On Christmas day, it was very awkward because all the presents under the tree were for Tyler except the one he purchased for me, so it felt very different as we normally took turns opening gifts.
When I first talked with Steve about what we should do for Christmas, he said he wasn't going to celebrate it this year. I told him we have another child that we need to celebrate and make new traditions with, but unfortunately he couldn't do it and pretty much stayed in Alyssa's room for the two days. However, he has been more flexible recently as end-of-year sales are slower, so he was able to travel to see his family and spend more time relaxing at home.
We were invited to spend Christmas Eve and Day with my family, yet even Tyler said it would be too hard to go so we ended up staying home. Instead, I think we watched like 20 holiday movies this season. We did go to church as a family, and we even exchanged gifts the day after Christmas. I got some beautiful sweaters and an adorable dress from Tyler, and Steve got me an iPhone 8 Plus and it came with an iPad Pro that is super fast.
The weather kind of goes with our mood. It has been extremely cold, dark, windy and depressing out, although we did have a white Christmas. The single-digit temperatures are no longer anything I want to deal with. I need to fly south like the birds.
Speaking of birds, we have about 100 in our backyard! It is like a bird sanctuary as Steve feeds them daily and has installed a heated birdbath. I don't know how the birds don't freeze up after a bath. We threw a bucket of water in the air and it turned to ice.
Regarding my health, I'm still experiencing eye pain and redness in addition to blood coming through on the iris. The doctor wants to try in a month to do an injection to absorb the blood. If that doesn't work, the only other option is to go in surgically to clean and irrigate the eye.
I had my kidney and lung scans that came out clear with no metastasis seen yet. I recently had an MRI with the brain and spine and will get the results on the 17th. The only difference I feel is I'm getting more headaches but it may be from stress, through I'm also feeling some imbalance when I'm not walking.
In September, I had Mohs surgery on my left upper lip, which was supposed to be the size of a dime and turned out silver-dollar sized. Luckily, the plastic surgeon afterward closed it in a way that it hid most of the scar in my smile line, though it was a very painful procedure. In addition, I had more freezing of precancerous skin areas.
I also went to a bladder specialist and I'm now on a regimen of antibiotics, probiotics and cranberry pills, yet I still managed to get two bladder infections and my creatinine level has now jumped from 1.6 to 1.8. When I received my kidney, it was 1.0, which indicates perfect function. Over 2 is the beginning of kidney failure. They don't know why my function is not a good and they say we just have to keep watching it. I myself attribute it to the bladder infections because there's nothing else I'm doing differently.
More fun times are ahead. I definitely plan on going down to Florida for another visit soon. Since Selena is in the spare room, I will probably wait until Jordan goes out of town for a couple weeks. In the meantime I may look into flights to Colorado to visit Jeff.
My 43-year-old cousin Wendy (Mary's daughter), is having a baby girl next month. I look forward to going to visit the baby and bringing a personal gift when she arrives.
I also got an invitation for a kidney donor/recipient reception at the University of Chicago. It's a celebration with food and speakers, and my donor is going to speak at it. Tyler, Lindsey, Suzanne and I are all going.
Suzanne continues to be my chief, getting me to most of my appointments with help from a few other friends, who give her a little bit of a break. I am thankful to all who have helped me and listened to my complaining and/or just lent an ear.
Again, we now realize just how much Alyssa was loved and will be missed. The overwhelming support from everybody has gone above and beyond what we would have expected, and we are just so appreciative.
Yipee! I'm so happy to ring in the new year in. 2018 has got to be better! I'm wishing you all a happy and healthy one as well.
Thursday, August 10, 2017
Wishing Summer Would Never End
Wow, I can't believe our dog days of summer will soon be coming to an end. I hear many of my friends talking about getting their kids ready to go off to college or high school again, and it all begins on Monday. It is crazy how fast time flies.
Summer began with Tyler's graduation from University of Wisconsin Whitewater. I'm happy to say he graduated with over a 3.0 GPA in marketing and finished in four years. To me, that is an accomplishment in itself. Well, he may actually have a position at an advertising firm. He's waiting to get the contract to look over the details.
We did a joint college graduation party in June with Tyler and his girlfriend Lindsey at her family's country club - how lucky. It was one beautiful affair. The food was excellent and we even had a sweet table and popcorn for people to bag up and take home. Fun was had by all.
Steve is still working at the same company for five years now. He had a memory garden for Alyssa made in our yard with purple flowers, some chairs, a couch, and a swing around our fire pit, and he spends a lot of time there. It is meant for friends and family to come and reflect and remember Alyssa. There are memory stones and autograph stones that 50+ kids have already signed.
As for myself, I'm doing my usual daily things like reading, listening to books, calling friends, and planning outings. I've been able to get out for quite a few meals, and the highlight so far has been going to see Paul McCartney in Tinley Park. My son and I went with my large family - there were 16 of us total in the lawn. It was so much fun to get up and dance, and being blind I probably had more fun than anyone else, as I was in my own world dancing and singing and I didn't feel like anyone was watching me. Now I am in search of seeing more concerts. I realize how much music means to me, and I used to go quite frequently when I was younger. I'll try to hit Ravinia up a couple times before the season ends.
I may not have traveled yet this summer, but Sheila and Barry took a trip to Australia. I live vicariously through their lives as they travel quite frequently. Sheila even brought me back a pair of pajamas and slippers that first class passengers receive, so now when I sleep in them, I dream I am taking a trip. Their Florida trips this summer were too short for me to join, but they are coming here to visit in early September.
In addition, Michelle, my long lost friend from London, will be coming in to visit from August 26 to Sept. 9. We have so much to catch up on as we have not seen each other since Tyler was 12 and Alyssa was 5. That was almost 10 years ago. She's going to flip out when she sees me now; it's mostly my skin that has changed. We will be venturing downtown for four nights while she is here to see the city, and are planning to visit her ex-husband who is the owner of Bareburger in Chicago.
Also this month, my Godmother and Aunt Jan will be coming with her husband, Jim, and family to celebrate their 50th wedding anniversary. I was actually a flower girl in their wedding. Her children are throwing a party which includes everyone who was in their wedding party, as well as family and friends of theirs from high school. Jan and Jim met in high school (cheerleader and athlete). They are making a weekend of it, beginning with a Cubs game, party on the lakefront at a hotel, and then a large family outing.
I've also had visits with my sorority sisters. They've kidnapped me for lunches and dinners, and we have future Ravinia and Arlington Park Race Track outings later this summer. Wow, my summer is certainly ending with a bang - a busy August and September ahead.
Here is the latest on my health:
Eye: Upon returning to my eye doctor in late April, I was hoping I would be putting a date on his calendar for a heroic eye surgery to both clean the blood out of my eye and rid me of any tumor that he could see while I was under anesthesia. The day I went, I had pneumonia, was feeling like crap, and waited three hours to see him. By the time I got in, he told me he thought I missed my window of opportunity because I wasn't seeing the light perception as much as I had at our last appointment. He said he would not just go in and do surgery because he may not even get perception out of it once it was through. I started getting teary eyed, so he grabbed my hand and said, "You overcome everything, you'll get through this, too." And then he told me he'll still see me in case it changes and to let him know. Tyler and I went to see him about a week ago, and I could perceive light going on but not when it turned off. If that improves further, he may consider doing the surgery. At least things moved in the right direction. In the meantime, my right eye has been painful and red, which he said is a side effect of the radiation I did 18 months ago and I may have that forever. It sucks. I didn't know these would be the side effects.
Kidney: My function has gone down slightly. My creatinine has gone from perfect to 1.6 (over 2 is the beginning of failure) but I think they feel it is due to my frequent bladder infections and use of many antibiotics. I have my 12th or 13th infection since my transplant right now (about one a month). My doctor said this bacteria is now resistant to every antibiotic but one, and the one that will work is harmful to my kidney. If the infection passed into my kidney already, the antibiotic will not take care of it. I'm supposed to see how I feel this week. If I get fever, back pain, or worsening symptoms, I'll need to be admitted to the ER for IV antibiotics. I've been frustrated with these infections since the beginning and have told the doctors I feel there are too many and there must be something not right. Just as I suspected, my tolerance has built up and I may have to be hospitalized to treat bladder infections in the future.
Skin: I'm still being treated for skin cancers and need to schedule myself to have Mohs surgery on my lip. I opted to wait until later in Sept. because I was very worried about the summer sun and being in the public eye with friends. I pretty much wear a light sweater most days to prevent the sun from hitting my arms and I sit in the shade most of the time. That's so unlike me.
Pain: I inquired about medical marijuana to treat chronic pain that I continue to have, mostly in my neck and back. My doctor thinks my pain medication is a better option, and I should cut back on that, but she does not recommend I use a natural alternative like medical marijuana. It doesn't make sense. I'm hoping to pursue this issue with a pain group. When I asked her for a sleeping pill, she said I need to find a therapist as well to get at the root of the problem of why I'm not sleeping (including stressors like Alyssa, my health, etc.). It's only been five months since Alyssa's passing and I know I have a long journey ahead. Not a day goes by where I don't have her on my mind.
By the way, for all of you wondering what really caused Alyssa's passing, the autopsy of her brain and upper spine diagnosed a VHL tumor in her brain stem and top of her spine that ruptured and caused this area to bleed. She may also have had my clotting disorder, which could have caused her to bleed more?? It took a while to get the results. We all still need to pursue therapy to get over this tragic loss. Steve is going to a therapist for it already; I'm looking forward to my support group starting in September; and Tyler has been seeing someone from the Chapel and we are searching for a good therapist for the two of us.
Tests: In October I will be getting all of my scans again - brain, spine, and though I no longer need my kidney or pelvis scanned, they now need to scan my lungs. At my post-op visit after my kidney removal, the surgeon said that the pathology report showed cancer cells in the fat that surrounded my left kidney. Even though he extracted the fat layer, he also accidentally punctured my lung and dissected a piece off of my diaphragm. He is now concerned that I may get metastasis to these areas. I know it only takes one cell. I chuckled when the kidney surgeon asked why I waited so long to have that one removed, because he had told me three or four times I needed to wait and it could be years before I could have it out, and the tumors were small. So, when I needed the pelvic mass removed, I felt it best to have both surgeries at once. On the bright side, I no longer need any pap smears due to the hysterectomy. Woo hoo!
As many of you have already heard, my sister Robin and family have moved from the Poconos to North Port, Florida (between Sarasota and Ft. Meyers). She moved into a rather large home with lots of property and even two palm trees, and she's a 10-minute drive from the ocean. As soon as she builds her pool, I will be there. My room is already ready and furnished, and has a bathroom. I think I know where I will be spending many of my winter months!
My brother Jeff had brain surgery in late May and is doing quite well. He is still having some neurological problems as the area was so swollen before surgery and contained a large cyst, so following surgery he still had some headaches. In addition, he is now a diabetic, as his pancreas could not handle all the steroids needed to keep the swelling down, causing his function to stop, so he now takes insulin three times a day. But he is still just overjoyed with life as he never thought he would survive the surgery. Their kids are all growing up so fast and unfortunately we usually only see each other due to a tragedy or surgery, so Sheila, Barry, and I plan to visit Colorado sometime soon just for fun.
It looks like I have a busy five weeks ahead of me but they all sound quite fun-filled. I look forward to seeing all my family again, and my great friends coming in to visit, and the sorority girl outings. I'm so blessed to have all of you in my life. Again, many thanks to those of you who have helped me throughout the summer (phone calls, rides, shoulders to lean on, people to dine with, etc.). Hoping to see more of you as the summer continues.
Summer began with Tyler's graduation from University of Wisconsin Whitewater. I'm happy to say he graduated with over a 3.0 GPA in marketing and finished in four years. To me, that is an accomplishment in itself. Well, he may actually have a position at an advertising firm. He's waiting to get the contract to look over the details.
We did a joint college graduation party in June with Tyler and his girlfriend Lindsey at her family's country club - how lucky. It was one beautiful affair. The food was excellent and we even had a sweet table and popcorn for people to bag up and take home. Fun was had by all.
Steve is still working at the same company for five years now. He had a memory garden for Alyssa made in our yard with purple flowers, some chairs, a couch, and a swing around our fire pit, and he spends a lot of time there. It is meant for friends and family to come and reflect and remember Alyssa. There are memory stones and autograph stones that 50+ kids have already signed.
As for myself, I'm doing my usual daily things like reading, listening to books, calling friends, and planning outings. I've been able to get out for quite a few meals, and the highlight so far has been going to see Paul McCartney in Tinley Park. My son and I went with my large family - there were 16 of us total in the lawn. It was so much fun to get up and dance, and being blind I probably had more fun than anyone else, as I was in my own world dancing and singing and I didn't feel like anyone was watching me. Now I am in search of seeing more concerts. I realize how much music means to me, and I used to go quite frequently when I was younger. I'll try to hit Ravinia up a couple times before the season ends.
I may not have traveled yet this summer, but Sheila and Barry took a trip to Australia. I live vicariously through their lives as they travel quite frequently. Sheila even brought me back a pair of pajamas and slippers that first class passengers receive, so now when I sleep in them, I dream I am taking a trip. Their Florida trips this summer were too short for me to join, but they are coming here to visit in early September.
In addition, Michelle, my long lost friend from London, will be coming in to visit from August 26 to Sept. 9. We have so much to catch up on as we have not seen each other since Tyler was 12 and Alyssa was 5. That was almost 10 years ago. She's going to flip out when she sees me now; it's mostly my skin that has changed. We will be venturing downtown for four nights while she is here to see the city, and are planning to visit her ex-husband who is the owner of Bareburger in Chicago.
Also this month, my Godmother and Aunt Jan will be coming with her husband, Jim, and family to celebrate their 50th wedding anniversary. I was actually a flower girl in their wedding. Her children are throwing a party which includes everyone who was in their wedding party, as well as family and friends of theirs from high school. Jan and Jim met in high school (cheerleader and athlete). They are making a weekend of it, beginning with a Cubs game, party on the lakefront at a hotel, and then a large family outing.
Here is the latest on my health:
Eye: Upon returning to my eye doctor in late April, I was hoping I would be putting a date on his calendar for a heroic eye surgery to both clean the blood out of my eye and rid me of any tumor that he could see while I was under anesthesia. The day I went, I had pneumonia, was feeling like crap, and waited three hours to see him. By the time I got in, he told me he thought I missed my window of opportunity because I wasn't seeing the light perception as much as I had at our last appointment. He said he would not just go in and do surgery because he may not even get perception out of it once it was through. I started getting teary eyed, so he grabbed my hand and said, "You overcome everything, you'll get through this, too." And then he told me he'll still see me in case it changes and to let him know. Tyler and I went to see him about a week ago, and I could perceive light going on but not when it turned off. If that improves further, he may consider doing the surgery. At least things moved in the right direction. In the meantime, my right eye has been painful and red, which he said is a side effect of the radiation I did 18 months ago and I may have that forever. It sucks. I didn't know these would be the side effects.
Kidney: My function has gone down slightly. My creatinine has gone from perfect to 1.6 (over 2 is the beginning of failure) but I think they feel it is due to my frequent bladder infections and use of many antibiotics. I have my 12th or 13th infection since my transplant right now (about one a month). My doctor said this bacteria is now resistant to every antibiotic but one, and the one that will work is harmful to my kidney. If the infection passed into my kidney already, the antibiotic will not take care of it. I'm supposed to see how I feel this week. If I get fever, back pain, or worsening symptoms, I'll need to be admitted to the ER for IV antibiotics. I've been frustrated with these infections since the beginning and have told the doctors I feel there are too many and there must be something not right. Just as I suspected, my tolerance has built up and I may have to be hospitalized to treat bladder infections in the future.
Skin: I'm still being treated for skin cancers and need to schedule myself to have Mohs surgery on my lip. I opted to wait until later in Sept. because I was very worried about the summer sun and being in the public eye with friends. I pretty much wear a light sweater most days to prevent the sun from hitting my arms and I sit in the shade most of the time. That's so unlike me.
Pain: I inquired about medical marijuana to treat chronic pain that I continue to have, mostly in my neck and back. My doctor thinks my pain medication is a better option, and I should cut back on that, but she does not recommend I use a natural alternative like medical marijuana. It doesn't make sense. I'm hoping to pursue this issue with a pain group. When I asked her for a sleeping pill, she said I need to find a therapist as well to get at the root of the problem of why I'm not sleeping (including stressors like Alyssa, my health, etc.). It's only been five months since Alyssa's passing and I know I have a long journey ahead. Not a day goes by where I don't have her on my mind.
By the way, for all of you wondering what really caused Alyssa's passing, the autopsy of her brain and upper spine diagnosed a VHL tumor in her brain stem and top of her spine that ruptured and caused this area to bleed. She may also have had my clotting disorder, which could have caused her to bleed more?? It took a while to get the results. We all still need to pursue therapy to get over this tragic loss. Steve is going to a therapist for it already; I'm looking forward to my support group starting in September; and Tyler has been seeing someone from the Chapel and we are searching for a good therapist for the two of us.
Tests: In October I will be getting all of my scans again - brain, spine, and though I no longer need my kidney or pelvis scanned, they now need to scan my lungs. At my post-op visit after my kidney removal, the surgeon said that the pathology report showed cancer cells in the fat that surrounded my left kidney. Even though he extracted the fat layer, he also accidentally punctured my lung and dissected a piece off of my diaphragm. He is now concerned that I may get metastasis to these areas. I know it only takes one cell. I chuckled when the kidney surgeon asked why I waited so long to have that one removed, because he had told me three or four times I needed to wait and it could be years before I could have it out, and the tumors were small. So, when I needed the pelvic mass removed, I felt it best to have both surgeries at once. On the bright side, I no longer need any pap smears due to the hysterectomy. Woo hoo!
As many of you have already heard, my sister Robin and family have moved from the Poconos to North Port, Florida (between Sarasota and Ft. Meyers). She moved into a rather large home with lots of property and even two palm trees, and she's a 10-minute drive from the ocean. As soon as she builds her pool, I will be there. My room is already ready and furnished, and has a bathroom. I think I know where I will be spending many of my winter months!
My brother Jeff had brain surgery in late May and is doing quite well. He is still having some neurological problems as the area was so swollen before surgery and contained a large cyst, so following surgery he still had some headaches. In addition, he is now a diabetic, as his pancreas could not handle all the steroids needed to keep the swelling down, causing his function to stop, so he now takes insulin three times a day. But he is still just overjoyed with life as he never thought he would survive the surgery. Their kids are all growing up so fast and unfortunately we usually only see each other due to a tragedy or surgery, so Sheila, Barry, and I plan to visit Colorado sometime soon just for fun.
It looks like I have a busy five weeks ahead of me but they all sound quite fun-filled. I look forward to seeing all my family again, and my great friends coming in to visit, and the sorority girl outings. I'm so blessed to have all of you in my life. Again, many thanks to those of you who have helped me throughout the summer (phone calls, rides, shoulders to lean on, people to dine with, etc.). Hoping to see more of you as the summer continues.
Friday, March 31, 2017
Happy to be home!!
Kim was discharged yesterday. We got back home at dinner time. Felt so good to be free!!! Stacey came in the morning and stayed all day with us. She brought some delicious muffins and treated Kim to a Starbucks. YUM!! The doctors cut Kims pain meds in 1/2 which made for a painful day and a more painful night. While I ran out to pick up Kims prescription, she was very surprised when she heard Tyler's voice in her living room. Tyler and Lindsay showed up at the house wanting to surprise her. Jo came later with some Lou Malnatis pizza for them. Kims so happy to have him home for a couple days. Today her pain was worse in the morning after a restless night. Believe it or not she was up before 8. As the day has gone on the pain is a little more tolerable. She was able to shower, which was a good thing after being in the hospital all week. Thanks again for all the prayers!!! I'm planning on staying through Tuesday or Wednesday. Lastly, we were talking to our brother Jeff who made it known that this is the first time in 25 years that Kim is cancer free as far as the kidney is concerned!!! When I told her that yesterday while still at the hospital, we were taking a stroll in the hallway and she had to stop to do a "jig" (dance). She was so excited!!!! Til next time...
Wednesday, March 29, 2017
Improving everyday!!!
We slept for about 5 hours last night...felt so good. Doctors started their rounds at about 5:45 and were done around 6:30 this morning. Gyne/oncology group was impressed with progress Kim was making. Urology group told Kim that her hemoglobin went up to 10.1 and her creatinine down to 0.8. This is the lowest reading Kim can recall ever having. White blood cell count is slightly elevated at 13. Urology team removed catheter from bladder and she has been to the bathroom 5 times peeing like a race horse!! They also removed the juggler iv from her neck which was great since it was so irritating for her to have. She couldn't put the phone to her ear, which for Kim was a priority. Lol This afternoon her "special k" was discontinued. That was the pain medicine that they started yesterday in the iv. Her PCA pump was also discontinued. She is now only taking oral med for pain and doing great!!! Her friend Angela spent the afternoon here. She brought gourmet cupcakes and some Reese's eggs....oh these sweets are yummy!!! Activity wise, she has spent a lot of time in the chair. We walked the halls a few times together and OT took her once when they came. Planning to go home tomorrow unless something comes up between now and then. It's looking good as of now. Jo is planning on coming here this evening. If she doesn't, we plan on having a relaxing night watching a movie.
Tuesday, March 28, 2017
Update #2
Kim had a rough night and morning. Lots of pain and trying to get it under control was very challenging. Finally mid morning she was feeling relief. Her hemoglobin was at 7.1 so she needed a blood transfusion (2 units). Our cousin Curt came this morning with Starbucks for Kim (her fav) and stayed all day. It was nice to visit with him. Then Mindy came bearing new jammies and chocolate covered blueberries (her other fav). She got up and sat in a recliner for a couple hours today. She had her pain meds changed and now is feeling a little more comfortable. She also looks 6 months prego due to the co2 used during surgery. She's thrilled about that. Plus, the nurse just referred me to being her daughter. Lol. (I like that. See I am 26) So that's one of the things that keeps her from being comfy. In the last 2 nights we have both had a whopping 6 hours of sleep. So on that note, this is a short update as we are both going to try to sleep before she gets bothered in the middle of the night by blood draws and doctors starting their rounds at 5:45. Nighty night!!! 😴😴😴
Monday, March 27, 2017
Update on Kims surgery
Hi everyone. Well our day started at 4:00 this morning. (Good thing Kim has been able to sleep all day). Her surgery is over and everything went well!!!!! Thank God!! Her kidney surgeon said that the kidney was attached to the diaphragm so he had to remove a little piece which he stitched up. They will be monitoring her closely to make sure no air gets in between her lungs and wall of her chest cavity. Not a major complication though. Then the gyne/oncologist surgeon said that surgery went well also. She removed both ovaries, both Fallopian tubes and of course the mass. That mass was a cyst that was attached to an ovary. She said its highly unlikely to be cancerous....another thank God!!! It has to go to pathology to confirm, but she really doesn't think it will be positive. So, thank you for all the prayers!!!!! Keep them coming as Kim seems to have a hard time through recovery after surgery. I will do another update later tonight or tomorrow. One more note....a big thank you to Jo, Lindseys mom, for coming with this morning. She has been great company for me!!! 😄
Tuesday, March 21, 2017
My Sweet Daughter, Alyssa Rose
I remember Barry telling Alyssa "I don't know what I would do if anything ever happened to you; you're like the daughter we never had. I don't think you know just how beautiful you are inside and out, and what a great person you are." Then I jumped in and basically repeated most of what he said, yet added that it's so hard to believe with her great personality and smile and beauty that she was not more confident about her friendships. Little did she know, she had friends in every group. I told her to wait until high school, since that is when I met Sheila, and look how close we've been all of these years. She always wanted to be like me and have great long-time friends.
To me, this day was a gift, because many times on the weekend she was off shopping with her friends, at parties, or just hanging out and not doing mom things. As much as she said she wanted to go out that night, I know she really enjoyed the day as well.
That evening, she got a phone call to go shopping and got ready, but then began screaming and crying that she had the worst headache. I've never heard her sound like this in my entire life. Steve ran up to be with her, and then Barry, and Sheila and I followed and called 911. We knew something was drastically wrong, as did she. I heard she had major fear in her eyes as she was so unsure what was happening. She could not feel her arms and legs, and her vision kept coming and going. She kept crying that she didn't want to leave the house, but we reassured her that we loved her and we'd be with her at Condell and we had to find out what was happening. We continued to talk with her and reassure her until she went for a CT scan. Afterward, she was to be transferred urgently to Lutheran General Hospital as they are a Trauma 1 and better equipped for this neurological disaster. Soon before we left Condell, Tyler and Lindsay arrived from school.
We left to drive to Lutheran General and she was to be airlifted. She did not arrive until more than two hours later. I have never felt time pass so slowly. No one could tell us where she was or why the delay. We finally got word that she was minutes away. They rushed her in to put a shunt to drain the blood out of her head but unfortunately it would not drain properly. She then went for another CT. The doctor showed us the new scans compared to the first ones from Condell and there was a dramatic change. In one scan she had flow to the brain in blood but the second scan showed major bleeding with a clot at the base of the brain that blocked the blood supply for oxygen to reach the brain. The doctor told us it was called a "sick brain" because she was most likely completely brain dead at this point. After a series of brain activity tests, she was pronounced dead at 9:00 a.m. on Feb. 27, but they kept her on life support as we chose to consider organ donation.
As of now, we still await autopsy results to learn what caused this to even happen to our healthy 14-year-old. The neurosurgeon seems to think she may have had an arteriovenous malformation (AVM) or an aneurysm most of her life that just suddenly burst. She was also very recently diagnosed with having the VHL gene but luckily we had not yet told her. I don't know what is taking so long to complete the autopsy.
The nurses, physicians, social workers, and chaplains were all incredibly supportive at Lutheran General. I sill have a lot of unanswered questions about what happened at Condell for the hours she was there.
All of our family and friends were also wonderful. Robin, Jeff and their families; Sheila and Barry (and family who flew in later); Lindsay and Jo; Steve's brother Mark and family, Suzanne and Mindy, and others - we all sat at her bedside for days while they planned her organ donations. Due to the fact that Alyssa was otherwise healthy, we decided it was best to give forward the gift of life and sight. After being an organ recipient myself, I can only tell you what an incredible gift it is. The process took until 5pm Wednesday to find and schedule recipients and then harvest her organs in surgery.
So now her corneas are in the eye bank; her liver went to a local 4-year-old child; a local 30-year-old received her intestine; a 60-year-old from NY received her lungs; and her heart went to a woman in her early 50's who, by the way, was a perfect match to Alyssa and lives in Pittsburgh. All the transplanting was done by Wednesday evening and everyone is most likely home and recovering. If they're so willing, we would be honored to meet the people who received her organs and see that Alyssa is still here with us in part.
As most of you are probably already aware, we had a wake and service on March 4th and an open house the following day so kids could come with their families, be in Alyssa's room, see all her things, and say their last good-byes. From most of the people I spoke with, they said this was probably the largest wake they had ever seen. The mass at the end of the wake was standing room only and there were speakers so those in outer rooms could hear what was said. The pastor and youth minister were wonderful in explaining to the kids and families why bad things happen and where you go when you die. Alyssa's cousin and close friend Emma from Colorado and two of Alyssa's dearest friends all spoke, followed by my sister reading Tyler's eulogy, and then Alyssa's Godmother Debbie reading mine. It was a very emotional day - there are no words to describe it. I'm still in shock as the day was so wonderful and the rest seemed like a bad nightmare and felt so surreal. My hardest part is I will never get to see her again or any pictures and videos. All I have are my dreams and memories.
I'm hoping this will be the worst blog I ever write in my life and I look forward to updating you shortly, telling you how easy my surgery was, that my tumor is benign, and I'm looking forward to eye surgery to hopefully see a little something again. In the meantime, we are enjoying the many little signs that remind us that Alyssa is still with us.
I would like to thank everyone who was here to surround us during this difficult time. In addition, I would like to especially thank Oak Grove School teachers, students, and their friends and families. The outpouring has been so overwhelming and so appreciated. Not a day goes by where I don't receive about 100 texts and 20 phone calls trying to make sure we are all okay, and what, if anything, we need. Finally I'd like to thank The Chapel's pastor and youth minister for making this an easier time for all of us and Alyssa's friends. One of the most remarkable things I've heard is that all the children are now talking about becoming organ donors, and many have joined the morning youth group, and many believe that Alyssa is in a much better place and is probably enjoying a baked potato bar as we speak (ha ha).
Finally, not a minute, hour, or day goes by without Steve, Tyler, and myself feeling surrounded by Alyssa's presence. We've all had difficulty sleeping, and keep awakening with nightmares of that dreadful week. I don't know when, if ever, you can get over losing a daughter or sibling. Please keep Alyssa alive in your memories so that she will live on forever.
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