Bone Marrow Transplant #2

I went to hell and back… to say the very least!

It was definitely a rough time with bone marrow transplant #2. As expected, but I didn’t expect SO many side effects from the chemo immediately following transplant. I was supposed to be in the hospital for only 4 weeks and ended up staying 8… But let’s start from the beginning.

Before my hospital stay for transplant, I spent a month “down the shore” in South Jersey with my family. We were still in extreme isolation that summer. No hugs, no outdoor restaurants, if we went to a store or a friend’s house, we had to wear a mask. It was ANOTHER low-key summer for us. But that’s ok! We played a lot of tennis, read some books, did some Gray Malin impossible double- sided puzzles, cooked new recipes, and spent a lot of time on the beach(out of the sun). 

For the months of June through August, I was put on a chemo pill Onureg, which is the pill form of Vidaza. Fun fact: when I was on Vidaza(and the Venetoclax pill) in Spring 2020, I lost 20+ pounds in 2 months. I think they forgot to mention to me that Onureg is essentially taking the same drug… I threw up several times a day. Some days I barely got out of bed/the couch because I was nervous to walk around and throw up somewhere. Many foods upset my stomach. It also caused GI issues. Sorry if this is TMI, but sometimes I would be on the toilet and had to choose which end needed the toilet the most at that time #funstuff Thank God I had a trashcan I could barf into. 

I took that pill once a day for two weeks, and then had two weeks off. I felt so badly for my appointment in August, that on the drive to the appointment, I sat in the second row of the car hugging a trashcan. We had to stop at a Wawa(gas station) so I could use the bathroom. Had to use it for both reasons. The doctor was supposed to do my 13th bone marrow biopsy that day, and I told them it probably wasn’t the best idea because I would have thrown up from all of the pressure. We decided to do it in two weeks once I was home from the shore.

I was originally supposed to be admitted on Friday 8/26, but due to Penn’s COVID procedures from getting the donated cells, they had to collect the cells and freeze them, so that they were ready when it was needed. The donation center where the cells were coming from wanted to collect the cells the week of. If the donor had COVID or any other sickness, they would not be able to donate, and I would have already started the chemo that fully wipes me out. It would not be good. I posted this video on Instagram explaining it for everyone who was waiting for me to get admitted to the hospital.

Prior to being admitted for my transplant, I had to get a handful of tests done. I had to get a chest X-ray, EKG(heart test), a breathing test, 20+ tubes of blood drawn, dental evaluation, and maybe another test or two. 

I got my 4th PICC line(peripherally inserted central catheter) into my left arm. I’d had two in my right arm from my first and second rounds(chemo and then transplant and more chemo), and one in my right arm again from when they admitted me to the hospital when they found my tumors in Spring 2022. I had them take it out for summer because I wanted to go swimming in pools and the ocean, and play lots of tennis!! Plus, you can hide it with sweatshirts and short sleeves when it’s not summertime, but there’s no way to hide my sleeve that covers my PICC line with a sleeveless dress!

For this time, we had to put it in my left arm because they feared that my vein was scarring from so many PICC lines. I didn’t know that could happen to your veins?! This time was the only time I got my PICC line inserted outpatient, and it was not a fun experience. I got very bruised from the pressure and i was sore for days. Not the way I wanted to start my admission.

I received a super intense chemo for a few days leading up to my transplant. It was so intense, that it completely wiped my immune system to the point that my body would not have been able to make blood without the transplant. This time, I did not get mucousitis or esophagitis; however, I did throw up an ulcer that was in the back of my throat. It is truly WILD what our bodies are capable of creating!! My mom is happy that I don’t have a picture of that to post…

One reason why you don’t want to bring too many belongings to the hospital, is because the day before your transplant, they have to deep clean a room, and wipe down everything you brought. Every book, every lotion… etc. So I went very minimal this time.

One thing I will note is that this time I bought some pajama sets from Target in a larger size so that I was super comfy during my time in the hospital. Last time I just wore pajama shorts and tanks. The fluffy bathrobe with a hood and a super comfy blanket are a must!

This transplant, they just moved me to a different room(north side facing the football stadium – during football season!) First transplant, they put me in the “family room” for a few hours while they cleaned my room and belongings. This set up was much better.

So Here we go…!

What the heck is a bone marrow transplant?

Fortunately, it’s not an actual surgery like it used to be back in the day. Now it’s just like a regular blood transfusion hooked up to my PICC line in my arm. Due to COVID rules, they collected the blood from a donor a few days before I got admitted to the hospital, froze the cells, and then defrosted it in front of me right before they gave it to me. Then you have a handful of nurses and doctors observe you to make sure you don’t have an immediate reaction. A VERY exciting 15 minutes!

What happens next? 

The next few days are waiting for a reaction, it’s good to be boring! We also watch my counts(ANC, WBC, and Hemoglobin) go down. When they freeze the cells, apparently there is a certain scent to it… I smelled like tomato soup for a few days. No joke. I walked the hallways and saw my doctor; he said he smelled it without me asking him! 

For this transplant, I got two doses of extremely harsh chemo on days +3 and +4. Now this is where my horrible side effects came from…

Things got a little interesting…

As many of you noticed, I went “dark” on Instagram for a while. Probably for about a week or two. At that time, I went to the ICU for a few days for a brain bleed that was caused by a medicine that I was on to fix my liver.. 

I was retiaining so much fluid in my body and specifically my stomach, that they put a needle in my stomach(after lots of numbing!!) and removed 1 LITER of fluid… had a lovely scab on my lower abdomen for a few weeks while that site recovered. Needless to say, I was a swollen puffball for weeks to come due to the fluids.

My liver was all out of whack. My bilirubin was 15, while a normal person is around 1… needless to say I had to get my liver back in order. That was causing the jaundice(yellowing of the skin).

When the nurses do their switch of shifts, they ask you a bunch of questions. I was falling back/asleep onto my pillow after I answered a question. My nurse noticed my eyes were glassy and I wasn’t making sense, so she ordered an immediate CT scan. For this, I will forever be thankful for you, Alyssa!! They found a small brain bleed near my VP shunt(I have a tube that goes from my brain to my abdomen that I got placed when I was only a few weeks old!) But since it was near that, they freaked out even more…

Here’s a funny story. So when I went down to the ICU for my brain bleed, the nurse asked me with a bit of sass, “why are you here?” and I responded in my half state of mind “I’m here to beat cancer, and not for the first time!” Glad I had a sense of humor when I was totally out of it!! I have a video on Instagram of me telling this story and I have some good giggles while telling this story!!

After the brain bleed, I had to get a catheter put in for a week or two because they didn’t want me getting up to walk to go to the bathroom. I also had to use a commode. I felt like I was a billion years old!

I got a UTI at some point. I can’t remember when because they told me afterwards. 

I had to be on oxygen because my levels were in the mid 80s and they wanted me as close to 100 as possible. Due to my level not getting better and me being stubborn about wanting to take off the oxygen piece that was going up my nose, they put me in the ICU for a night. That one, I remember!! 

I had to go on TPN which is liquid nutrition. Luckily that just went through my PICC line. But that also caused some issues with my liver. They eased me off of that and I wasn’t eating enough, so they put me on a feeding tube through my nose. The first time they tried this, I thought they broke my nose…. It was SO painful. So then I tried to eat for a few more days and it just wasn’t enough. A few days later I decided I needed to go on the feeding tube, as much as I didn’t want to. This time they tried the same nostril and it wouldn’t even go through… luckily they tried the other one and it went through as smoothly as it *normally* could go. I don’t ever want to do that again. I threw up afterwards, which is expected.

At some point in my last two weeks, my PICC line in my arm stopped working/got clogged. We tried TPA(a blood thinner) which normally unclogged it, but we had no luck. So here I go, getting a new PICC line in my same arm(left). My 5th one I’ve had. Luckily, this one went WAY more smoothly than the one I got put in for transplant.

Typically they want you to be showering every day to get rid of bacteria on your skin; however, when you are hooked up almost constantly to an IV or two, it makes it difficult to take the time to shower. It also takes a crazy amount of effort and energy to shower, that once I was in the shower, I sat on the bench and just let the water fall on me for a solid 20 minutes. I am a fish, and I could be under a shower head all day! I had to have a nurse help me twice with showering. Again, another thing that made me feel incredibly dependent. I made sure that I could stand up showering and be able to wash myself with a washcloth before I went home.

The 14th floor and one section of the floor at Penn is strictly for bone marrow transplants. Those patient rooms are so airtight and dry that no ones eyes and skin come out happy. Towards the end of my stay, my mom was putting lotion all over me almost every day. I always wore socks(preferably ones with grips!) and that dried my feet out pretty badly. One day my mom goes “yea there’s no point of putting on lotion on these…”. I looked at them and my heels were completely calloused over. Me being me, I started to peel off my massive callouses on both feet. Under each callous, was a little patch of ANOTHER callous. THAT’s how bad my feet were!! I did get a gel mani and pedi before I went to the hospital. But when you’ve spent 8 weeks in the hospital, your nail polish grows out quite a bit!!

The two things that were holding me in the hospital so long were 1- eating like normal, since I hadn’t eaten normal food in weeks, and 2- my platelet level and my hemoglobin level. They also wanted my liver and Bilirubin level to be decent before leaving. And they wanted me to be somewhat stable with my platelets as I couldn’t get transfusions every day once I was home.

Let’s just say, I left on a Friday which was exactly 8 weeks, and that Monday, I cried to every nurse, doctor, PT, nutritionist… pretty much anyone that walked into my room. I cried because I just wanted to go home. 8 weeks is WAY too long to be in the hospital. I had my parents visit almost every day, but I just wanted normal food, my bed, my shower, and my puppies. I was half joking when I told everyone on Monday that “if I’m not out of here on Friday, I’m walking out!” Needless to say, they worked on a plan to get me discharged that Friday.

When I got home, my street, and my front yard were completely decked out with balloons and decorations from family and friends. Of course I cried! It felt so good to be home! After I looked at all of the decorations and pet my puppies, I took the best shower of my life, and the best nap of my life. I woke up from that nap feeling like I was in a different dimension… it felt AMAZING to be back in my own bed!!

Some questions people had from Instagram:

Comparison to first transplant:

• Night and day! My first transplant I barely had any reaction which actually isn’t good. It is probably one of the reasons why I relapsed around day 80. I was also NOT Measurable Residual Disease negative going into my first transplant, but they thought I was. The results didn’t come back until after the transplant process started. The restrictions were much more intense as far as food and wiping down everything that came into the room. My recovery was much easier as well. My tastebuds didn’t change, I had an appetite; but this time I could have takeout when I got home! I definitely had some fatigue, but nothing like this time(with the exception of post radiation treatment). 

Mental toughness:

• I don’t really know how to answer this other than you get put into survival mode and you do literally anything you can to stay sane and healthy. I watched a lot of TV because I didn’t have the attention span to read. I took a lot of naps. But I do believe I have somehow gained a special mental toughness before I got sick, because I bet most of you wouldn’t even last a week of what I had to go through.

What items helped comfort during your stay:

• Let’s just say, do and bring whatever makes you comfy! For me, I have this lush and super fluffy bathrobe with a hood that I just loved to wear whenever I was out of my bed. I had either a sweatshirt blanket from the shore or one of my Ugg blankets. I love the weight of blankets while I’m sleeping. I did bring my iPad for binging TV which I didn’t really need because I had a 70” screen that I could watch tv on. My first week I had the second week of the tennis US Open on, so that preoccupied my first week! Fuzzy socks WITH GRIP were key as well. I did bring one book, and had a stack of books at home for my mom to grab from. I didn’t want a stack of books that I might not be reading. Going in for a bone marrow transplant, they have to clean everything you bring in, so I tried not to bring much! 

Advice for someone going through it:

• Don’t get overwhelmed by the overall picture. It will only mentally and maybe physically exhaust you.
• Take it day by day. 
• Try not to compare your journey to others. Good and bad. My first transplant I only had one cancer friend that hadn’t had a transplant. Second one I had a handful of friends that had second transplants so I knew what to expect. Sadly, two of them passed while I was in my dark period. So just monitor your mental health to get you through it. 
• Be an advocate for yourself. If something seems off, let your doctors and nurses know ASAP. You are only hurting yourself by not speaking up. Whether it’s a new symptom or side affect, or wanting a test done, please tell your nurses and doctors.
• Don’t be afraid to rest. Your body is going through A LOT and it needs to rest!!
• Eat while you can, because once you can’t eat, it’s a struggle to get back to normal.
• Bring a comfy pillow and blanket. They will be your best friends for your hospital stay!
• Ask your nurse for an egg crate or two! They don’t do much but any little bit will help!

If you have any additional questions, please feel free to leave a comment below!!