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.
Finally, on Thursday, I arrived at The James Cancer Clinic after spending the night in Mansfield Hospital due to transport issues. They took me straight to a room on the fifteenth floor of the hospital and checked me all in.
As they started asking questions and the team members slowly came to introduce themselves I became overwhelmed with my situation. They weren’t prepared to diagnosis me they needed to run the test. Not surprising, that’s what they do. They want their own diagnosis.
At this point I was sick, drinking water, peeing myself, I didn’t want to eat anything. I was so weak. Walking to my own personal bathroom about 10 feet from my bed I was out of breath one would think I ran up two flights of steps to get there but that wasn’t the case.
I just wanted to sleep and I was so overwhelmed by what was happening to me. I was alone and I had cancer.
They threw a lot of info my way without even a diagnosis.
They started taking poking me for blood which I’m a hard stick making it really unpleasant. I was told I had cancer was bad enough without the constant blood drawls.
It seemed like every time they would put an IV in it would fail within a matter of hours. At one point I had two IVs that didn’t work. Ugh, it was so frustrating.
But what does one do?
Day 12 March 24
I made it through the night. I awoke feeling better than I did just hours prior. Just like the morning before I felt icky, my sheets, t-shirt, and the bed felt damp. My fever must’ve finally broken.
I needed to take a shower.
After my shower, I was exhausted. My whole body felt weak and I was breathing heavily after a quick shower. It wasn’t like I was in there forever. I grabbed my towel and wrapped it around my body then headed to the bedroom. I climbed into bed still wrapped in my towel to catch my breath.
My family chat on Facebook came across my phone as I picked it up. My family was curious about how I was feeling this morning.
After finding out how my night went, one of my daughters said she was on her way to take me to the hospital so I didn’t have to drive.
When she arrived I was still in bed wrapped in a towel. She helped pull out clean clothes as I got dressed to leave for the ER. When we pulled up to the ER she dropped me off and told me to keep in touch.
I walked into the ER and explained to them how I felt. They signed me in and took me back to a room.
They started running blood tests and a CT of my abdomen because of diarrhea.
They brought me a large cup filled with water. I drank the bottle at record speed. They couldn’t believe how much water I was drinking. I couldn’t get enough. I was so thirsty but my stomach couldn’t hold it.
After a while, the doctor came in. She said my bloodwork is all over the place. She said to the point I almost needed blood. She was worried I was bleeding inside or there was something else going on.
She ordered more bloodwork to send to the lab to Mansfield because they can test for more things than the lab on site.
After blood work and an x-ray, she came back in to talk to me. By then I had drunk another two glasses of water. They said I was the most hydrated person in the place.
The doctor looked at me and informed me she didn’t want me to go home. She wanted to send me to Mansfield for more tests including a visit to the oncologist.
She informed me she thought I had Acute Myeloid Leukemia. That was the first time I had heard of AML.
I was blown away!
I needed to see an oncologist. I have cancer. What?
I didn’t see that coming. I was alone in the ER and just found out she felt I had cancer.
That wasn’t what I wanted. I wanted an antibiotic and send me home to get better. I felt terrible but cancer?
I told the doctor I wanted answers and tests that’s why I came to the ER. She contacted Mansfield and ordered for me to be transferred to Mansfield by transport.
When I finally made it to Mansfield I spoke with the oncologist and she felt I need to either go to the James Cancer Clinic or Cleveland Clinic. I needed more than they could provide.
I requested the James Cancer Clinic because of its reputation.
Sadly, it took all night and into the next day to find transportation to The James. But when I got there they were waiting on me.
Nothing has changed. I’m still nauseated or have no appetite, very tired, and have diarrhea. I’m drinking lots of liquids trying to flush this out of me but it’s not working. I’m at a loss.
I spent most of the night before and today sleeping other than watching tv and talking to Randy on the phone. I tried to get a hold of the doctor to make an appointment but the best they would do was a video call with someone other than my doctor. For some reason, my doctor wasn’t available.
This Covid thing really sucks. I want to be seen now and in person. I need tests. I need an antibiotic to kill whatever is in my gut. Enough is Enough.
While talking on Facebook chat with my family, I told them I was going to go to the ER tomorrow so they can run tests and give me an antibiotic so I can get over whatever this is.
I awoke around midnight feeling really weak and hot. My sheets were damp with sweat. I was so tired and weak I wasn’t sure if I would be able to get out of bed.
I went to grab my thermometer but I couldn’t find it. I swore I brought my thermometer upstairs with me but I couldn’t locate it.
I managed to go to the bathroom and when I looked in the mirror my face was red. My head and body felt hot. I was running a fever.
I popped a couple of Tylenol went back to bed. There was no way I was going to make it down the stairs to get the thermometer and make it back up. I was starting to become scared because I was so weak. I thought about trying to get downstairs and calling 911. But, I wasn’t even sure I could make it down there safely.
So I watched tv waiting for the medicine to take effect. After about 45 minutes I found my thermometer under my remote controls. I took my temperature and at that time I was over 102. My fever was coming down but not down enough. I popped a couple of ibuprofen and watch some more tv till I finally fell back to sleep for the night.
I left work before completing everything I had to do that night, but it would just have to do. At that point, I just didn’t care. My body has had enough. I was so tired and running out of breath so easily.
I went home to take a nap for a few hours waiting to call my doctor as I promised Randy I would do so.
After my little nap, I talked to the receptionist trying to make an appointment. Because I was showing signs of Covid-19 I would have to do a video appointment. I wasn’t happy, it’s been 10 days. I need to see a doctor. I needed tests, not a video chat.
Instead, I decided to go to the CVS Minute Clinic. I signed in and I was able to see the nurse practitioner right away. She tested me for Covid first thing which came up negative. Thank goodness for that.
After the examination, she felt I had a really bad case of the flu. She wanted me to make an appointment with my doctor to follow up. She said I will need bloodwork, urine, and possibly a stool sample which she can’t run at CVS. She wrote me off work for three nights to rest up and hopefully give the doctors time to see me.
I was feeling confident she was right about the flu and I probably have some bacteria issue in the gut which may need an antibiotic. I was on the road to recovery at least I thought.
When I got home I contacted work to let them know I was sick and I wouldn’t be in for a few days.
I was so ready to climb in bed for some much-needed sleep.
I spent the entire day sleeping other than getting up to go pee once in a while. Rest will do me good!
It’s day 9, still no change.
We slept in pretty late. As Randy showered and dressed I headed downstairs to make breakfast. We ate breakfast and in no time he left for home.
I sat in my recliner covered in my blanket watching tv while I waited on his phone call before he headed to work. As I sat there I didn’t feel motivated to clean house or do laundry. I really just wanted to go to bed.
When Randy called I told him I was going to take a nap and I would text him when I got up. I went upstairs set an alarm an hour before I had to be to work just in case I slept that long (5hrs). I wasn’t planning on sleeping that long but if I did I would at least make it up in time to get ready for work.
Five hours later my alarm goes off. I’m exhausted I hit the snooze for twenty more minutes. Those 20 minutes pass which seem like seconds instead of minutes. I text Randy and we talk briefly before heading to the bathroom to get ready for work.
As I sat on the toilet tears rolled down my face. I desperately wanted to call off but it was way too late to do so. I was so tired I wasn’t sure I would even be able to do my job. But, I was going to try.