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.
Sunday, February 3, 2019
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.
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