It’s a wonderful feeling to watch my medicine slowly decrease but sometimes it makes things a little rough. About two months ago the doctor stopped the anti-rejection medication which was ok at first. Then Boom a few weeks later things started happening.
Image by Darko Djurin
I started having issues eating. I would start to eat something and after just a few bites my stomach would start to become so nauseous I couldn’t eat. Even my go-to favorite foods were becoming an issue.
Eating out for dinner was something that quickly became pointless because I wasn’t able to eat like normal.
There were many days I lived on Campbells Chicken Noodle Soup because it was something I could regularly eat without feeling nauseated. Can you imagine eating chicken noodle soup for breakfast? This became an issue lasting over three weeks.
The inside of my mouth developed sores and became so dry my tongue would stick to the top of my mouth while I slept. Brushing my teeth became very painful, especially my front teeth.
On top of the stomach issues, I also would have uncontrollable diarrhea which sent me running to the bathroom. It would quickly turn to water and my bottom would be so sore it would bleed.
Then I started to find pills floating in the toilet. My bowels were such a mess some of my medicine wasn’t able to absorb due to moving too fast through my system.
I had to make sure I kept my water intake up so I wouldn’t become dehydrated. There were many mornings I felt terrible just because I needed to drink water. I would spend the first 10 minutes of my morning drinking water just to lose it again in the toilet.
Fatigue became a major issue. There were days I spent on the couch just watching tv with no energy to do anything. Naps during the day would make sleeping during the night a challenge.
The skin on my face has been dry for months. I was given a steroid cream to apply each day which would stick to the dry skin making it turn very white against the blazing red skin. I look like I have a crazy weird sunburn on my cheeks, eyelids, lips, and temples. The area around the eyes and temples is very tender to the touch.
Every morning I awake with my eyes stuck together from a yellow puss-like substance similar to pink eye. If you’re familiar with pink eye puss you know it’s like cement. Even using a warm compress to help remove the dried yellow bits made my eyes sore. I’ve lost a few eyelashes in the process. The area around my eyes was swollen making it hard to open my eyes fully.
I was on an antibiotic for a week which didn’t help with my eye issues either. Nothing seemed to help. I was given a prescription for refresh drops which doesn’t help either. I have to visit an Ophthalmologist who is familiar with GVHD of the eyes in a couple of weeks. Hopefully, he can relieve the swelling and discharge before I lose all my eyelashes.
My transplant team decided to up my Prednisone to help with GVHD. It helped with the stomach and somewhat the colon but that was it. Due to the side effects, she wanted to start me on a new medicine called Jackafi which is crazy expensive but doesn’t have the nasty side effects Prednisone has.
After starting Jackafi some of my symptoms started to get a little better. I’m hoping things will continue to improve as the medicine builds up in my system.
GVHD can cause a lot of issues and I’m blessed to not have anything too serious just more of an inconvenience and troublesome. It always can be worse, much worse.
Do you or someone you love suffer from GVHD? Was it treatable? I would love to hear from you so drop me a comment.
OMG, what a day. I showered and walked with PT. She said I did really well. I told her my problem isn’t walking it’s getting up off the couch, chairs, or toilets when they are low. She suggested doing that more often to build up my legs.
Lunchtime I decided to get a voucher to use at the Cafe on my floor of the hospital. They make the best grilled cheese and tomato bisque. It is delish.
After lunch, the doc visited with some news. I tested positive for Adenoviruses in my bladder. It’s a virus and treatable. Yes, we finally getting somewhere. She went over instructions for treatment which sounded harmless enough. I told her to do whatever she won’t just get this over with. I regret this statement.
First up.. medicine prep. No biggie. Then they inserted a catheter into my bladder. They filled it with fluid and a medicine to treat the virus on contact. I only had to leave that medicine in for an hour. WOW OMG WOW Not only did I feel like my bladder was going to explode but I was having major bladder spasms to the point the liquid was oozing out where it was it was connected to me. This was happening every 5 min. It was like being in labor. ugh, She offered me morphine which I said yes to. I’m not one to take pain meds but crap!!! After 50 min my nurse asked me if I had enough. UMMM YES! She undid the pin and slowly the liquid drained from my bladder taking the pain with it.
The nurse cleaned me up and helped get me in my chair. ugh, I survived. My nurse for the night informed me he was going to irrigate my bladder. I asked for the details for that procedure which sounded simple enough. Again…I regret that statement. He brought in three very large bags of fluid and a kit to hook up to the catheter. One line to the catheter and one line out to the bag. Easy enough, right? WRONG! After about 5 seconds my bladder was in a spasm and the pain returned. ugh, I looked at him and said I can’t sleep like this. I CAN’T DO THIS! He then turned the flow off and asked the PCA to grab a syringe. There was a large blood clot preventing the liquid to drain into the bag. Finally! The pain went away and all is well…for now anyway. It could be a very long night. Let us hope not to keep me in your prayers. I’m exhausted
Day 72… what a day. I had a bad start. I keep having these excessive hot moments where I sweat terribly. I’m not talking a little perspiration I’m talking flooding to the point I have sweat running down my neck like a waterfall. It’s like I was on a treadmill running but I wasn’t. It’s terrible. I become very fatigued and out of breath. Sometimes I can’t catch my breath and I feel very overwhelmed with fear.
I feel like a caged animal. I can’t deal with the anxiety because my body doesn’t work like it should because of the medication I’m on. I’m not depressed, I just can’t manage what is happening to me. Normally, I would go for a brisk walk to get rid of the adrenaline going through my veins but when your body doesn’t work like it’s supposed to that makes it impossible.
I worry about getting to my appointments on time. Did I do everything I needed to do? Did I check my sugar and take my blood pressure readings? Will my blood pressure drop too low and cause me to pass out? Can I make it from point A to point B safely? Will this lightheaded or dizzy feeling pass?
This is the stuff that goes through my brain. It becomes so overwhelming I can’t take it at times.
Trying to get to my appt at 8 am is just difficult and not possible for me. I need the time to get everything done without stressing over everything.
The doctors feel it’s something else going on, hormonal maybe. Doctors all agree I need to keep things slow in the morning because that time is difficult for me. My transplant team moved all of my morning appts back a bit to give me time. That should help to give me more time to manage the things I need to get done before heading to the hospital.
After my anxiety episode passed, I felt better as if nothing happened. I was able to get my emotions in track and carry out the day without any issues.
As for the other appointments, nothing really new to add with cardiologists or kidney dr. The only change to medicine was dropping my steroids and Tacro a bit which hopefully help with the fatigue in my legs.
I was very relieved to be back at the hotel to relax. Three doctor’s appointments and physical therapy were just too much for me.
At the James, they give you a tablet to order your meals, your list of medications, and various other information. I was checking it out and there’s also a note area that documents the doctor’s and nurses’ assessments.
I was reading through and I found the diagnosis information they never gave me. Chances are it really wouldn’t have mattered much because I was so out of it and wanted to sleep more than anything.
At the time of diagnosis when I was feeling the worse, my AML was 86%. That’s pretty high. 86% of my blood was cancer. That explains why the rush of chemo and blood transfusions I received.
I know a few people who have battled cancer. Those people had time to meet their team, prepare arrangements for treatment, run many tests, and allow the diagnosis to sink in. Typically, they had at least a month to prepare.
I was given three days. Three days till they were starting chemo to treat cancer I had running in my veins. Three days for the diagnosis to set in, meet the team, and contact everyone to let them know I would be in the hospital for four to six weeks.
If I would’ve waited and not gone to get the help I would’ve died probably in a week or two.
That puts life in perspective. I was close to death and didn’t even know it. I thought I had a bad stomach virus or food poisoning, not once did I think I had cancer or I was dying.
If things aren’t right get help because you just don’t know. I’m very grateful to still be alive and in remission with the prayers, wonderful doctors, the drugs that keep working, and the donor that gave me a second chance at life!
Thursday I received platelets. Mine was 6,000 which is quite low. Then today I spiked my first fever. It was 100.4 to 101 which isn’t a big deal for normal people but it is for someone who doesn’t have an immune system. I spent the whole day sleeping and that’s what I’m going to do more. I’m tired and nauseated. I can’t wait for my body to start building.
I haven’t felt the greatest. I was ready to be discharged yesterday to go to the hotel but an hour and a half before I was going to leave fever hit. I’ve been battling fever, nausea, and fatigue. I’ve only been out of bed long enough to go to the restroom. It’s been tough but doable. They have run multiple tests but can’t find the source of the fever.
My bloodwork and cultures show no growth. Everything looks good leaving it pointing at the new cells setting up and running full speed ahead resulting in fevers. They decided to give me a steroid to calm my bonemarrow down a bit. This morning was tough with nausea, vomiting, and diarrhea. But after I showered and took a little nap everything turned around. I was able to eat dinner like a normal person not like a picky 2 year old who doesn’t want to eat her green beans.
Its test day, they tested my lungs, did the echo and bubble study on my heart. Then an ultrasound on my arms, legs, and chest. Echo and bubble study was good so my heart is ok. The ultrasound showed no blood clots.
We are still waiting on the results of the lung test hopefully we get that tomorrow. My oxygen level is still great, vitals are all still good. Still some blood in her urine, no results about that. So now we wait for more results tomorrow.
I’m slowly feeling better. I was actually able to do the prep for the colonoscopy last night. Fun fun! Which led to very little sleep last night. Plus they woke me at 6:30 AM for the test.
After the test, I napped till PT woke me to go for a walk. It was short because I was tired but I managed. I’m looking forward to bedtime and hopefully a good night’s rest.
I’m no longer hooked up to the iv so I shouldn’t be awake to pee every 2 hrs. That will be helpful.
One of my doctors mentioned starting to slowly wean me off of some of my meds which will help tremendously. I have an entire pharmacy at the hotel. It’s crazy how much medication I take. I’m so looking forward to moving on and someday going home. It seems like an eternity since I’ve been gone.
I was able to spend time with my family and go out to dinner. I’ve missed everyone terribly. It’s been almost 2 months since I left to start this journey and hopefully not too many more to go. I’m very tired tonight but trying to stay up a little longer than I have over the last couple of months. It’s a struggle the grandkids wore me out. It was well worth it tho.
(From my sister, Deanna) Andrea is back in the hospital again. I just had to call the squad, she passed out twice on me. She has not been feeling good the last 2 days and has had diarrhea. I believe she may have got too hot and dehydrated because she started feeling light-headed in the shower. She jumped out and she sat on the toilet and that’s when she started to shake like last time only this time she passed out on me twice. I’ll let ya know when I know more probably won’t know anything till tomorrow some time.
I’m still at the James but hoping to be released soon. My sodium level is down which they’ve decided to stop my kidney hormones to see if I no longer need them or maybe a smaller dose. My CT scan was fine except it showed possible low-grade colitis. No CDiff, that’s a relief. I’m feeling much better no nausea and diarrhea. It’s been a long couple of days without much sleep during the night. This girl is ready for bed.
It’s been quite the day. My day started off really well. I was feeling great and had an early shower. Then boom, I didn’t make it to the bathroom twice. Ugh, and I just showered. Noooo. It’s part of the struggle.
Things I’ve had to deal with at times but I will get past this. Someday. Hopefully soon. So yes I’m still in the hospital. I’m hoping to get out tomorrow but still not sure. My numbers are out of wack and my kidneys are showing a little distress. They want to get everything back where it should be before sending me back to the hotel. Otherwise, I feel good. I have more energy, I can stand to shower, brush my teeth, and get dressed all at the moment without breaks. That is great! The little things we take for granted. This journey makes those little things so important. I miss so many people, my life, and normalcy
I’m starting to get new hair. It’s a slow process but it’s coming back.
When the doctor visited this morning she said my goal was to eat as I would normally and walk. If i had a good day she would release me tomorrow. Fingers crossed no other setbacks in blood work.
I feel great and had a really good day. I ate all my meals and drank almost the liquid I needed for the day. Randy visited and we walked 4 laps in the hall. That’s huge for me. The most I’ve done was two. But it felt great and I was going well walking and holding my sweethearts hand. Did my heart as good as my body. It’s been a great day. Hopefully, they’ll get me out of here tomorrow. I can’t tell you how ready I am.
Yesterday I felt unstoppable, today not so much. Whenever I have a really good day it’s followed by a very tiresome day. It’s been that way since day one. I’ve been lightheaded and very fatigued today. Ive spent the day in the recliner watching tv trying to stay awake. Hopefully, tomorrow will be a better day and I will finally get out of here.
I can honestly say I’ve never seen a doctor let alone doctors be happy a patient developed a fever. They entered my room saying someone spiked a fever like I had done something great.
Unexplained fevers and bone pain indicate engraftment in cells.
I have had both now.
I received blood infusion today and potassium too.
Eating is difficult but I’ve managed to keep my meals down today.
Today I had the final chemo infusion.
Doctors are very pleased with my progress and think I will be released from the hospital by the end of the week. Hopefully, they’re right!
My doctors are preparing to release me tomorrow. I’m their star patient on the floor.
My only issue is eating and holding down what I eat. It’s a job at times.
They’re transitioning from nausea medicine iv drip to pill. I’m on a lot of medications last I can’t even tell you what I’m on. The next step is to the hotel for the next eighty-five days.
Day 13- In order to go home, my ANC needs to be 500 or more to go home. I was at 600+ close to 700 yesterday morning. Which they said my numbers have been climbing. Well, this morning the dr came in and said I’m amazing. She told me what my number was yesterday and then told me what it is now…1400. She said that is incredible. By the time I get into the hotel, my number could be in the normal range or almost. ANC measures immunity. I’m killing it! Still have a hard time eating and keeping things down. It’s my only hangup. But otherwise, I’m good
Day 1– I had bloodwork and a light dose of chemo today. I have 3 more doses of chemo over the next 3 wks to fend off Graft vs Host Disease. It’s not strong enough to kill cancer it’s just for preventive measures. GVHD is when the cells don’t recognize my body causing them to attack. I’m still feeling ill making it really hard to eat.
I haven’t done much but sleep. My numbers are where they want them so at least that’s a plus.
Day 2 – Today was a little better, I was able to eat three small meals and keep them down. Plus it was a no-chemo day! That makes a huge difference. Today I received my first blood transfusion since being admitted. I’ve had at least 30 since diagnosis which is insane.
I have a lot of angels keeping me alive between all of the blood and my donor. Plus I have two amazing drivers Randy and my dad to get me to and from my appointments. I’m am blessed that’s for sure.
Day 3– Three words, nausea, vomiting, and fatigue. Daily life for me these days. I’m ok just really tired. I received another bag of chemo after lunch. Well if you call one bite of a PBJ sandwich lunch. Hey, I tried.
Day 4– The doctors are pleased with how things are progressing. I’m at the bottom right now which means my immunity is at zero. There’s only one way to go and that’s up.
My next bag of chemo is Tuesday which will make me feel more tired and nauseated but it’s all part of the process.
Day 5- After my breakfast, shower, and visits from friends, I was worn out.
Showers always wear me out. The heat and movement suck all of the life out of me. I usually need an hour to recoup.
It’s always wonderful to visit with friends but during a pandemic, it’s even more wonderful. It’s difficult to be separated from your friends and family especially when you’re going through something so difficult.
Doctors don’t expect my numbers to start recovering for over a week. Tomorrow I will receive chemo, platelets, and maybe physical therapy.
Day 6-I received another small dose of chemo today. The physical therapy walked with me in the hallway for a few minutes trying to build up my muscles. Overall, it wasn’t a bad day.
Day 7-My donor is a close-match male with A+ blood. My blood type is O+ which means my blood type will change to his. We are a 12/12 match. They hope for a 10/10 match. So we’re even better!
I had a blood transfusion today making today a better day.
I was able to eat 3 meals today without losing them. Things are looking up
Day 0… Happy Transplant DayTransplant!
It’s been a journey to get to this day with all of the rounds of chemo, nausea, hospital stays, bloodwork, and transfusions I’m so happy to finally receive the fresh cells to hopefully eliminate cancer that has turned my life upside down.
My gracious donor is from Germany and is a 12 out of 12 matches allogenic match. That’s pretty incredible, to say the least. A man who was kind enough to take the time to go through the donation process to save someone’s life he has never met. I am truly blessed to be his match.
If you’re interested in the process here are the steps from Cancer.net.
How does an ALLO transplant work?
Step 1: Donor identification. A matched donor must be found before the ALLO transplant process can begin. Your HLA type will be found through blood testing. Then, your health care team will work with you to do HLA testing on potential donors in your family, and if needed, to search a volunteer registry of unrelated donors.
Step 2: Collecting stem cells from your donor. Your health care team will collect cells from either your donor’s blood or bone marrow. If the cells are coming from the bloodstream, your donor will get daily injections (shots) of medication to increase white cells in their blood for a few days before the collection. Then, the stem cells are collected from their bloodstream. If the cells are coming from bone marrow, your donor has a procedure called a bone marrow harvest in a hospital’s operating room.
Step 3: Pre-transplant treatment. This step takes 5 to 7 days. You will get chemotherapy, with or without radiation therapy, to prepare your body to receive the donor’s cells.
Step 4: Getting the donor cells. This step is your transplant day. Your health care team puts or infuses, the donor’s stem cells into your bloodstream through the catheter. Getting the donor cells usually takes less than an hour.
Step 5: Recovery. During your initial recovery, you will get antibiotics to reduce your risk of infection and other drugs, including medications to prevent and/or manage GVHD. Your health care team will also treat any side effects from the transplant.
Five days till Transplant- It’s been a long day with doctor visits, physical therapy, central line insertion, picc line removal, and chemo. You know those days you just wait on everything and everything is running behind. Yes, that was today. For the central line, I was given a pain killer and medication to make me sleep but I didn’t go to sleep. I was awake for the insertion, in fact, I didn’t fall asleep at all today. After a couple of hours, my new line was bleeding a little as you can see in the pics. I had to stay still with a sandbag to stop the bleeding. So far so good! Thankfully, we were able to stay on schedule for the day.
Four days till transplant- Another round of chemo down! My numbers are still ok at this point. My team seems to be very pleased with my progress. One of the doctors said I’m going into this very strongly. He suspects I won’t sit at the bottom very long, I will bounce back quickly. I walked for a half-hour before lunch and a half-hour after dinner to build up my strength before my numbers drop too low. I’m feeling pretty good other than being bored. But what do you do?
One day till transplant- The last few days have been rough. I was so sick I couldn’t move my head without feeling like I was going to vomit. Sleep was my only escape.
However, I’m doing better this evening. The nausea is getting better.
My MRI was normal, in fact, the cyst I had in my brain has disappeared. They feel I didn’t have a seizure after all. They believe my blood pressure drop suddenly causing me to pass out. They have stopped all blood pressure medicines for now.
Tomorrow is the big day! My team feels I’m ready and all is well so far.
Day -3 started out really well but turned bad quickly.
They started me on another chemo today to drop my imunity to zero that requires eating ice chips for 2hrs to prevent mouth sores.
After chemo and lunch, I went to the gym to knock out a mile on the treadmill. I was a little tired but wasn’t a problem. When I came back to my room I was really hot so I relaxed while waiting for the nurse to cover my line so I could shower.
I was able to shower with little effort till the end when I started getting lightheaded which isn’t a new thing for me while I’m on chemo. I pulled the alarm for the nurse to let her know. She showed up, asked what was wrong, and that was all I remembered when I came to. I awoke confused because I was on the floor with my nurse next to me with my head turned sideways and a bunch of nurses all around. I was asked a bunch of questions and eventually, they were able to get me into a wheelchair.
The doctor questioned if I had a seizure. He ordered a CT because he was worried I hit my head. But my nurse said I didn’t because she went down with me when I went down and my head doesn’t hurt anywhere. My CT was fine but the doctor wants an MRI so I might end up doing that at some point tonight.
I’m very nauseated even with medicine. I wasn’t able to eat dinner but so far I’ve kept my meds down. Now I’m hoping to sleep some tonight. I’m ok as long as I don’t lift my head. Tomorrow’s another day.