Getting ready for Kevin's bone marrow transplant (BMT) admission was heart-breaking (and rereading my caringbridge posts are bringing me to tears tonight). I know that people go into BMT in good shape but can have awful side effects and even death. Don't get me wrong - many, many people survive BMT and live long healthly lives, but I relived every patient death and every possible scerino of what could go wrong.
The weeks prior to BMT I lost a lot of weight. It was hard to me to wrap my mind around what had to happen... I vomited almost daily thinking about what had to happen in order for him to live. I vomited almost daily because I know this could have been prevented. The type of leukemia Kevin has includes three phases. It is incredibly rare to be diagnosed in the phase he was in. In fact - in blast crisis - his leukemia behaved like acute myeloid leukemia. Every since time he is ill or has any side effect - I spiral out of control. I just can not get past the fact that if I had noticed one fricking thing about my husband before he was diagnosed in this phase - he likely would have not needed a BMT. So when he has horrible nights of nausea, vomiting, headaches, etc... I become more and more disgusted with my absolute inability to tell something was wrong before it turned into a medical emergency.
So we tried to jam-pack a lot of family time and fun (and also estate planning...) before admission. We even had a big party with our closest friends just to see everyone prior to BMT. It was a fun night - but of course - I thought a million times - this could be the last time he sees them.
Thank GOD he was discharged from BMT and overall has been doing great.
But again - all of the bumps along the way just twist that knife deeper into my heart... It could have and should have been prevented...
So here are some posts from our CB page during the BMT process:
My nerves are starting to get the best of me the closer we get to transplant. I can not get over or accept this reality. Kevin has CML. CML has 3 phases. Chronic, accelerated, and blast crisis. Kevin was diagnosed in "blast crisis." This is one leukemia that timing of diagnosis does matter. If Kevin was diagnosed in "chronic" or "accelerated" phase he would have been treated with oral chemotherapy alone. There still would have been a possibility of transplant if he failed the oral chemo but most CML patients don't require a transplant UNLESS they are diagnosed in blast crisis.
This is my reality.
When he was first diagnosed, the shock of him having "AML" was unbelievable. When I found out his chromosomes on his leukemia cells actually classified him as CML I lost it. A fellow (oncologist-in-training) told us in his ICU room. I held it together in the room and then followed her out in the hallway. And lost it. I mean, I really lost it. I think she had to hold me up. Two freaking phases of CML that oral chemo could have worked.
My husband, who lives with someone who studies, lives and breathes leukemia at work, failed him. I failed my children, our families, and friends. I have messed up a lot of things in my life but there are no words, absolutely none, that can explain my devastation and heartbreak and self-hatred. The closer we get to transplant, the more I think about this. Please don't tell me not to - it doesn't help. I don't want him to go through this.
I generally get through the day by faking it. I wake up, put make-up on, get dressed, and interact with people. These emotions come waves. For example, I will be in a meeting at work and all of the sudden be fighting back tears. I think about just getting up and leaving the room -but I generally can get through the day. My drive home is when I relive everything on a daily basis. I generally try and call people when I am driving home as a distraction from my thoughts. That works sometimes. I recently started getting into Johnny Cash's music.. this might explain some of my demeanor... I truly feel better and less overall "panicked" when I am with Kevin. Just being with him calms me and overall just makes me feel better. This is one reason (of many) that we fit so perfectly together.
Before he went in we had a family photo session. It was amazing and brings me to tears watching this photo montage. (password: Brickler)
From the day before transplant:
I did not realize that knowing the date of BMT admission and getting closer to that date would make me a mess. I don't want to fall asleep at night because I want to make the most of our time at home. I don't want to sleep at night because all I do is have nightmares. It's kind of ridiculous, because on the flip side, I am as equally as nervous that the longer we wait for transplant the more of a chance we give his leukemia to come back.
Kevin tolerated the first couple of days of his chemotherapy pretty good. He was eating, drinking, walking around a lot, etc... Unfortunately today that changed. I left around 9am this morning to spend some time with Crosby and Adele. When I came back he looked like he felt like shit. He is having some nausea (no vomiting yet) and headaches. The chemo he is currently getting (Cytoxan) can cause bleeding of the bladder (hemorrhagic cystitis). So because of this he gets a lot of intravenous fluids with the goal of flushing out his bladder frequently to hopefully prevent hemorrhagic cystitis. Unfortunately he wasn't making enough urine so he needed something called Lasix (medication to make you urinate). After that he was up a lot going to the bathroom! Timing of the medication sucked because he gets really nauseous and his headache is worse when he stands up....
This is hell on earth. Kevin never complains about feeling bad. The only time he has ever complained about being sick is 3 months ago when he was diagnosed with leukemia. So I imagine that his nausea and headache and overall shitty feeling is 20x worse than he is letting on. I hate feeling so helpless and not being able to make him feel better... I hate this.
Tomorrow is a pretty major day in Kevin's life. He will get his bone marrow transplant. The "cells" will be arriving via a flight from Germany into Chicago. They will then be driven to FMLH and processed. His transplant will be sometime in the afternoon/evening. It is very anticlimactic. They will give him some pre-medications so he hopefully doesn't have an allergic reaction to the cells. They are infused over an hour or so into the permanent IV he has. There are no pokes or procedures for Kevin. Just an infusion that will become his new functioning immune system.
Kevin was diagnosed on May 28th and will receive a bone marrow transplant on August 27th. One day short of 3 months. Amazing.
People keep asking me if I am excited for tomorrow. I am happy that we have gotten to this point. There are people with leukemia who unfortunately never make it to transplant. Whether its because their disease didn't respond to chemo or they have bad infections or their bodies are in overall bad shape. Thankfully - that is not Kevin. But am I happy that he is getting a BMT? Nope, never. Am I excited that he is getting a BMT? Nope, never. It still makes me physically ill that this is happening and I still (and will always) hate myself.
After BMT, a few days later...
...Kevin's counts have officially bottomed out. He has needed platelet transfusions and blood transfusions for the past two days. He will continue to need frequent transfusions because his body is not able to make platelets and blood. One of the many things that sucks about that is that they wake him up at 4am to start the transfusions...
Overall I think his belly pain is getting better. We were able to stop his IV antibiotic and now he just continues on 2 oral antibiotics. One to treat his c-diff and one as a prophylactic medication to hopefully prevent infections. He is also on an antiviral and antifungal prophylaxis to hopefully prevent these types of infections. (And a boatload of other medications as well).
He is saying that his mouth and throat are starting to become sore - mucositis. I am praying that it isn't horrible for him.
This weekend went by fast. I actually left Kevin for more than 24 hours. I took Adele and Crosby home after dinner on Sunday night and spent the entire day together. We played, went on a pontoon boat ride, and had a lot of fun. As hard as all of this is on us - it has to be 20 times worse for Adele and Crosby. Not only are they not able to see their daddy - they don't get me as much either. Thinking about what Adele and Cros must think/feel makes me so sad - actually "sad" doesn't express the amount of despair/anxiety/failure that I feel about this. I literally have to choose between being with Kevin and being with Adele and Crosby. Every decision I make leaves someone alone. H.E.L.L. I constantly think about them waking up at night and crying for me, waking up from their nap looking for me, wanting to play with me, etc...
Don't get me wrong - I am eternally grateful to all of my family for taking them. I never have to be worried that they aren't getting the love they need because they are basically with either my parents, brother or Kevin's mom. But - I miss them. My heart aches when I leave them. I don't know if I make the right decisions about leaving them and being with Kevin or being with them and leaving Kevin. I frequently second-guess all of my decisions and pray so hard that I am not royally screwing up our children. So I again will apologize to those I love the most - I don't mean to be a b*%^&, and short with people, and rude. I just don't know how to do "this" very well.
Another excerpt, a few days later:
...Kevin had a rough 24 hours. He started having throat and mouth pain (mucositis) 2 days ago. Last night it was pretty bad. We didn't get much sleep at all. Although - he wanted to hold hands (which I love) and I was able to sleep for a little bit while holding his hand.
He continues to be my rock and my heart, as always.
He really isn't able to swallow his own saliva at all and has a suction catheter hooked up to his bed that he spits in. Eating and drinking is also not happening. So because of that he was started on something called total parenteral nutrition (TPN) that will give him nutrition through his IV. The majority of his medications have all been switched to IV because of the pain he is having and the concern that he wouldn't absorb anything he took by mouth. Mucositis affects mucus membranes. So basically from your lips down to your anus. So presumably the sores he has in his mouth and throat are also in his stomach. Because of this people are not able to absorb medications and food. Whenever he attempts to swallow his whole body cringes and it looks like he wants to scream in pain. He also has stopped talking for the most part because of the pain. His voice sounds different when he speaks which isn't surprising. Because of all of the pain he is in he was started on narcotics and is getting morphine through a continuous infusion into his IV. He is also able to push a button that is hooked up to his IV machine that gives him extra morphine (this is called a PCA). The morphine has seemed to help a little but he still is having trouble with swallowing and talking.
But, I am hopeful that his counts will continue to rise at a good pace and that he will soon be able to come home.
Adele has had a rough time with this round. She asks me a lot about going to see daddy and when he will be coming home. Any answer I give her isn't what she wants to hear.
This will never end. Leukemia will forever be part of my family. What I would give for my life 5 months ago. I get mad and jealous of "normal" people and their lives. I only wish my biggest problems would be about working late, having a baby that doesn't sleep, a messy house, bills, etc... I really can't explain to you what this is like.
And then finally, home again:
Home sweet home! Adele and Crosby were so excited to see their daddy. We got home during their naps. When they woke up and saw him sitting in the recliner they had the biggest smiles!!
We had our first clinic appointment today. Kevin is still having problems eating and drinking. He continues to have intermittent stomach cramping and nausea. I was quite shocked with how much he weighed. He probably lost about 25 pounds from his admission weight. It is VERY challenging to get him to eat anything. He literally had a granola bar and a 1/4 of a english muffin today. You can imagine how unpleased I am with this. He isn't able to drink well due to nausea/stomach ache/nothing tasting good so he now gets fluids through his IV at home. Getting that all hooked up and the IV pole all set up with both kids was a bit challenging. But all went well and "Mike the Machine" gave daddy his medicine.
Here our some photos of his BMT room at FMLH. My chair that I slept in every night is right next to his bed. And of course - huge pictures of our family were everywhere in the room!