Thursday, December 19, 2019
Heartbreaking news
On Friday, December 13, Kim had the ERCP procedure done at the University of Chicago Medical Center. Sadly, during the procedure Kim experienced a bleed near her brain stem that caused irreparable damage. She remained on life support until her family could arrive - Robin and her family came from Florida, and her brother, Jeff, from Colorado. After heartwrenching goodbyes, Kim was removed from life support and passed peacefully surrounded by loved ones on December 15.. A visitation was held on Tuesday, December 17. Her nieces put together a beautiful video tribute that you can see HERE. On Wednesday, December 18, there was a service followed by an open house at her home. So many friends and family came to say their goodbyes, as she had touched so many lives with her beautiful spirit.
Thursday, December 12, 2019
Heading to the hospital and hoping to return to a normal color soon!
Kim is on her way to the University of Chicago Medical Center where she will be admitted and then undergo a procedure tomorrow called ERCP (endoscopic retrograde cholangiopancreatography). The procedure combines upper gastrointestinal (GI) endoscopy and x-rays to treat problems of the bile and pancreatic ducts. Your bile ducts are tubes that carry bile from your liver to your gallbladder and duodenum. As Kim explained in her last post, her duct is blocked causing bile to build up in her liver. Because of this she is extremely jaundiced. Hopefully they will be able to drain some of the bile during this procedure and decide what to do about her gall bladder. She is hoping that they will choose to remove it rather than insert stents like her brother's doctors did initially. He said they were very painful and did not ultimately solve his problem.
After she has the procedure, she will share results and next steps.
Saturday, December 7, 2019
Hoping for a fresh start
My CBD has not been good to me. In August I went to the skin doctor and found out I had three areas of basil cell cancer rapidly growing and the worst was on my foot. That Mohs incision went from the bottom of my toe all the way to my ankle. I was unable to walk on that foot or wear shoes for several weeks, and had to keep it elevated as they used what little bit of tissue I had remaining on the side of my foot to close the large hole. I was so afraid it would open up but I followed all their instructions, so it didn't.
I saw the eye doctor again and he didn't see any change in my eye even though I told him I see shadows sometimes (when I look straight, it's down to the left). He said it's because when my eye pressure in that area goes down, the shadows turn up. I wish the pressure would stay down because the shadows make me feel existent again, even with the little bit I can see.
I saw the neurosurgeon in October for a routine scan. When he compared them in his office he said there was no change, yet when I read the report online a week later, the radiologist had reported to him the tumor on the left side of my brain doubled in size and has edema (swelling), and my right-side tumor has increased by 50% and has more edema. They also both show more vascular changes, which is not good, because it's the blood vessels that feed the tumors. I also have two cysts that have enlarged as the tumors produce fluid. So, I was a bit worried about that result and called the doctor, and he told me he wasn't too concerned because neurologically I hadn't had enough change that he would open up my head. I mentioned that I get a lot of headaches and he said that's from the tumors and he doesn't want to mask them, but I should let him know if I notice any other signs like falling or balance. My balance sucks already so it's hard to tell if it's worse, unless he means when it's so bad that I tip over. I'll never walk straight because of my vision and hearing problems - together they make you walk crooked.
Next, I went for my routine checkup of my abdomen and pelvis to make sure there is no spread of my cancer, as I'm high risk still from my kidney surgery 2.5 years ago where they believed some cells were left behind. I was lucky enough that the cancer hasn't spread but instead I found out I have a clogged bile duct and enlarged gallbladder and liver. My liver enzymes in all my labs (bilirubin, etc.) are off-the-chart elevated. I hadn't had blood drawn since July so this problem could have been going on for quite a while. But I finally have a reason for all my weight loss (I've lost four more pounds). The symptoms are extreme fatigue, unexplained weight loss, loss of appetite, nausea, yellowing of the skin, itching, muscle aches, and gallbladder pain. I've had all of that.
The itching is making me crazy, I spend 3-5 hours per night itching from head to toe. Nothing helps and I can't sleep, focus, or even watch TV - it's horrible. It comes from my toxic enzyme levels and being jaundiced. This is a worse feeling than the itching problems I've had before.
The reason I have the clogged gallbladder duct is because my abdomen has become filled with cysts that are compressing my stomach and go all the way up to my sternum. There are so many cysts that they have clamped the duct shut.
So, I went to the infectious disease physician on Monday and we repeated the blood work, and since the prior week my labs have even elevated further. This Friday I will be seeing a general surgeon and I'm still waiting to find out what day I'll see the gastroenterologist. I have to discuss it with different people to make sure I'm doing the right thing, and I'm told the doctors can't do anything until my latest bladder infection is gone (I've had two since my last post but it's a different bacteria than I normally get).
My brother Jeff was shocked to hear my scan report. He has had the same issues since April and it's been nothing but problematic. He's been in the hospital 5-6 times and had sepsis and a severe gallbladder attack. They told him with this issue you'll start to produce gallstones, and they found more than 100 in him. Based on his experience, I am going to propose to the doctors that they just remove the gallbladder straight away, and put a stent in down lower. I have to convince them that it's too dangerous to do otherwise. I don't want to repeat what happened to my brother.
They say once you have the surgery or stent done, your levels will go back down and your energy, weight, itchiness, skin tone, etc. will all improve. Unfortunately, I already have liver damage, which apparently is what happens from the levels being so high. But, what really sucks is it'll really mess up my holidays if we can't get it corrected before then. To end my health summary on a positive note, my mammogram was fine. Let's hope my dental appointment next week is fine, too.
Summer went way too fast. It feels like we only got eight weeks this year. Thanksgiving was uneventful - just the three of us and our Boston Market dinner, plus I invited one of my friends to join us as she had no plans, and she and I also went to a movie.
I hired a girl named Chris to help me organize. She's best friends with my cousin Debbie, we get along great, and we are both good purgers so we're getting a lot done. She comes once a week and has been very helpful. We've been working very hard on packing and going through boxes. We had about 20 boxes of stuff on the garage shelf and I only have three left. Then, I'll start going room to room to make sure everything is organized. I'm so happy to find somebody that I trust because she'll help me when I move as well.
As for the divorce, our attorneys are just trying to come up with an agreement that's fair, yet it seems a bit one-sided as of now. We plan on putting the house up for sale in April. So much to do, so little time!
I got together already with the neighbors for my birthday and it was very nice. We brought in food, had lime martinis and wine, and my friend got an incredible cherry pie that tasted like my grandma used to make. Needless to say, there were lots of nice gifts like a sweater, nice shirt, Bluetooth speaker, and body spray. I'm getting together with my other group of friends next Friday the 13th and we'll again bring in food and just hang out. That's easier for me than going out because I can hear better that way. So if I do end up in the hospital over the holidays, at least we will have already celebrated my birthday. God forbid I miss the celebration!
I also did the race track with my sorority sisters this summer and we all plan to get together again after the new year. I went with Vivian to see Steely Dan on Sep 2nd. It was my sister Lisa's birthday so I went there in her memory because she took me to that concert about 20 years ago.
Tyler's job is going great; he's been there for over two years. It'll be nice when his friend Phil comes in to visit him around New Year's.
I can't wait to take care of my current medical issue so I can make a plan to go south and see my sister Robin, cousin Debbie, and possibly get together with Sheila and Barry. My other trip that I'm looking forward to is going to London and Paris in late May or early June, yet my friend who lives in London has been quite ill so I have not bought tickets yet.
I have not Christmas shopped at all yet. Steve will be going to Michigan prior to Christmas and Tyler and I will spend Christmas Day with my side of the family. This will be our third Christmas since Alyssa has passed but thankfully I still see her in my dreams.
I'm always thinking of anniversaries of my family members passing. Most of my family died rather young: Alyssa at 14, dad at 30, sister Lisa at 36, brother Steve at 49, and mom at 58 and 23 days. In 30 days I will have outlived my mother. It's hard to believe all their lives were so short, and here I am, looking to begin my fresh start at the age of 58!
Happy Holidays and Happy New Year to everyone! Many blessings in 2020.
I saw the eye doctor again and he didn't see any change in my eye even though I told him I see shadows sometimes (when I look straight, it's down to the left). He said it's because when my eye pressure in that area goes down, the shadows turn up. I wish the pressure would stay down because the shadows make me feel existent again, even with the little bit I can see.
I saw the neurosurgeon in October for a routine scan. When he compared them in his office he said there was no change, yet when I read the report online a week later, the radiologist had reported to him the tumor on the left side of my brain doubled in size and has edema (swelling), and my right-side tumor has increased by 50% and has more edema. They also both show more vascular changes, which is not good, because it's the blood vessels that feed the tumors. I also have two cysts that have enlarged as the tumors produce fluid. So, I was a bit worried about that result and called the doctor, and he told me he wasn't too concerned because neurologically I hadn't had enough change that he would open up my head. I mentioned that I get a lot of headaches and he said that's from the tumors and he doesn't want to mask them, but I should let him know if I notice any other signs like falling or balance. My balance sucks already so it's hard to tell if it's worse, unless he means when it's so bad that I tip over. I'll never walk straight because of my vision and hearing problems - together they make you walk crooked.
Next, I went for my routine checkup of my abdomen and pelvis to make sure there is no spread of my cancer, as I'm high risk still from my kidney surgery 2.5 years ago where they believed some cells were left behind. I was lucky enough that the cancer hasn't spread but instead I found out I have a clogged bile duct and enlarged gallbladder and liver. My liver enzymes in all my labs (bilirubin, etc.) are off-the-chart elevated. I hadn't had blood drawn since July so this problem could have been going on for quite a while. But I finally have a reason for all my weight loss (I've lost four more pounds). The symptoms are extreme fatigue, unexplained weight loss, loss of appetite, nausea, yellowing of the skin, itching, muscle aches, and gallbladder pain. I've had all of that.
The itching is making me crazy, I spend 3-5 hours per night itching from head to toe. Nothing helps and I can't sleep, focus, or even watch TV - it's horrible. It comes from my toxic enzyme levels and being jaundiced. This is a worse feeling than the itching problems I've had before.
The reason I have the clogged gallbladder duct is because my abdomen has become filled with cysts that are compressing my stomach and go all the way up to my sternum. There are so many cysts that they have clamped the duct shut.
So, I went to the infectious disease physician on Monday and we repeated the blood work, and since the prior week my labs have even elevated further. This Friday I will be seeing a general surgeon and I'm still waiting to find out what day I'll see the gastroenterologist. I have to discuss it with different people to make sure I'm doing the right thing, and I'm told the doctors can't do anything until my latest bladder infection is gone (I've had two since my last post but it's a different bacteria than I normally get).
My brother Jeff was shocked to hear my scan report. He has had the same issues since April and it's been nothing but problematic. He's been in the hospital 5-6 times and had sepsis and a severe gallbladder attack. They told him with this issue you'll start to produce gallstones, and they found more than 100 in him. Based on his experience, I am going to propose to the doctors that they just remove the gallbladder straight away, and put a stent in down lower. I have to convince them that it's too dangerous to do otherwise. I don't want to repeat what happened to my brother.
They say once you have the surgery or stent done, your levels will go back down and your energy, weight, itchiness, skin tone, etc. will all improve. Unfortunately, I already have liver damage, which apparently is what happens from the levels being so high. But, what really sucks is it'll really mess up my holidays if we can't get it corrected before then. To end my health summary on a positive note, my mammogram was fine. Let's hope my dental appointment next week is fine, too.
Summer went way too fast. It feels like we only got eight weeks this year. Thanksgiving was uneventful - just the three of us and our Boston Market dinner, plus I invited one of my friends to join us as she had no plans, and she and I also went to a movie.
I hired a girl named Chris to help me organize. She's best friends with my cousin Debbie, we get along great, and we are both good purgers so we're getting a lot done. She comes once a week and has been very helpful. We've been working very hard on packing and going through boxes. We had about 20 boxes of stuff on the garage shelf and I only have three left. Then, I'll start going room to room to make sure everything is organized. I'm so happy to find somebody that I trust because she'll help me when I move as well.
As for the divorce, our attorneys are just trying to come up with an agreement that's fair, yet it seems a bit one-sided as of now. We plan on putting the house up for sale in April. So much to do, so little time!
I got together already with the neighbors for my birthday and it was very nice. We brought in food, had lime martinis and wine, and my friend got an incredible cherry pie that tasted like my grandma used to make. Needless to say, there were lots of nice gifts like a sweater, nice shirt, Bluetooth speaker, and body spray. I'm getting together with my other group of friends next Friday the 13th and we'll again bring in food and just hang out. That's easier for me than going out because I can hear better that way. So if I do end up in the hospital over the holidays, at least we will have already celebrated my birthday. God forbid I miss the celebration!
I also did the race track with my sorority sisters this summer and we all plan to get together again after the new year. I went with Vivian to see Steely Dan on Sep 2nd. It was my sister Lisa's birthday so I went there in her memory because she took me to that concert about 20 years ago.
Tyler's job is going great; he's been there for over two years. It'll be nice when his friend Phil comes in to visit him around New Year's.
I can't wait to take care of my current medical issue so I can make a plan to go south and see my sister Robin, cousin Debbie, and possibly get together with Sheila and Barry. My other trip that I'm looking forward to is going to London and Paris in late May or early June, yet my friend who lives in London has been quite ill so I have not bought tickets yet.
I have not Christmas shopped at all yet. Steve will be going to Michigan prior to Christmas and Tyler and I will spend Christmas Day with my side of the family. This will be our third Christmas since Alyssa has passed but thankfully I still see her in my dreams.
I'm always thinking of anniversaries of my family members passing. Most of my family died rather young: Alyssa at 14, dad at 30, sister Lisa at 36, brother Steve at 49, and mom at 58 and 23 days. In 30 days I will have outlived my mother. It's hard to believe all their lives were so short, and here I am, looking to begin my fresh start at the age of 58!
Happy Holidays and Happy New Year to everyone! Many blessings in 2020.
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