These are the questions I wished I could have asked someone before I was admitted. I hope you find them helpful.
This was the view outside my room; a view I'd often stare out into. To the left is an airport and the NYC skyline.
Emotionally, what were the days like at the hospital?
These are the days that will change you. The days where your mind could wander, where delirium might set in, and loneliness might become your friend. The hospital stay was hard. I didn’t experience the delirium but I certainly experienced the loneliness at times. My husband Nate would visit me in the morning and leave around noon to go to work. Those were always the easiest hours of the day. Those were also the hours I would muster up the strength to shower. I hated showering, especially after I shaved my head. It was always so cold, the hot water didn’t always work, and the bathroom itself was old and dark. It was difficult seeing myself in the mirror; the catheter, all the cords, and no hair. But I felt a warmth and encouragement knowing Nate was in the next room. I’ve heard people give the advice “take it one day at a time” but actually, a day was too much to bear. And truly, my advice to you is “take it one hour at a time, or even one minute” because that’s how hard it was to be in alone in that room, in that condition, away from family.
Were you afraid? The first paragraph might be triggering if you are about to walk in to this season, as I touch on some darker thoughts, and the second paragraph is more encouraging.
Yes. I definitely felt scared going in to it. It was basically fear of the unknown. A lot of questions ran through my mind, some darker than others. What would the isolation be like and would I be okay? What if something happens to me from my treatments? What if something critical happens to me and I have to go to ICU and be hooked up unconscious? The questions and fears just got darker from there. As you can imagine, the reality of mortality and the what if I don’t make it is essentially where my mind would go. In preliminary appointments when you sign all the papers, you’re presented with an option to create a living will if you don’t already have one. For someone that is young - a new mother, a wife, and at 29 years old - it’s just not a scenario you want to think about. But once it’s out there, it’s out there in your mind.
Overall, these thoughts didn’t paralyze me throughout my days leading up to my hospital stay. My solution was simple: to focus on what is actually true, to take my thoughts captive, to live in the present, and to truly enjoy the time I had with my husband and baby. In the weeks and days leading up to your hospital stay, celebrate life. If you are well enough, make plans with family and friends to do the things you enjoy. Those memories will warm your spirit when you are in the hospital.
What was the first day like once you were dropped off?
The first day wasn’t bad at all. We arrived to our room and my nurse gave us time to get settled and unpack before she hooked my catheter up to the IV pole. Everything is harder once you have wires and tubes coming out of your chest attached to a very cumbersome IV pole. My husband was allowed to stay with me the remainder of the day. This was considered day “ -7 ” and it was the first day of treatment. I received my first chemo treatment through my IV that evening. I didn’t get any known side effects from that chemo.
What was your day/schedule like? How did you stay focused?
Around 7:30 am, the nurses and nursing assistants will begin their rounds. They provide you any medications, change out any bags on your IV, take your weight, blood pressure, temperature, and pulse. Throughout the day I would have scheduled times to take medications and/or receive a treatment. Once total body irradiation (TBI) started, I would have one session in the morning and then a second session in the evening. I would try to eat lunch or dinner but it got to a point where I had no desire to eat the hospital food. My husband brought me snacks, and those helped a little. I highly recommend bringing snacks - things that you crave - because there will come a point where you really don’t want to eat anything. You also might experience mucositis in which case, you won’t be able to eat.
You get to a point where you become emotionally numb. Taking medications, calling the dining service, taking a shower, simply going to the bathroom - they become your job because your health becomes such a focus. And when you’re at your job, you just do what you need to. I tried to build activities in the day. I would go walking around the halls usually between 11 to 2. I found myself always sitting at my desk and coloring around 3. By 4 or 5, I would watch some TV… usually Food Network or HGTV or a Christmas movie. I also dabbled in video games a few times a week. Honestly, there came a point about half way in to my hospital stay where I kept the TV on all day. I needed that distraction to glance at and the normalcy of the TV sounds provided a sense of connection with home and the outside world. It became a comfort.
What was sleep like?
I’ve always been a good sleeper. As much as I wanted to keep sleeping, I wasn’t getting much sleep anyway. Throughout the night the IV monitors would always beep and some night nurses were louder than others when they opened the doors. But I tried to my best to simulate my normal night environment. I purchased a white noise machine and also wore a sleep mask since I was used to having the room so dark. My hospital allowed me to bring a pillow but it had to be new. I highly recommend doing that. The hospital pillows are often flat and uncomfortable. Going to bed early and “sleeping” was one form of escape for me; it was a way to pass the time. The sooner I would could go to bed and maybe fall asleep, the sooner I can leave the hospital.
How many medications did you take?
When I was in the hospital, many of my medications were administered through my IV. I wasn’t taking too many pills but probably around a dozen. Once I was home and no longer relying on my IV (though I still had my catheter and needed fluids), I was taking nearly 40 pills a day. Also, I was discharged on December 19th and for about a week and half at home, I had to set up an IV pole with fluids every morning. For me, a home nurse agency came to the house to train me on how to set the IV up and attach it to my catheter. But I also had the added benefit that my caregiver - my sister - happened to be a trained nurse which helped tremendously. Currently, at 115 days post transplant, I am talking close to 20 pills a day.
At what point did you lose your hair?
A few days before leaving for the hospital, I decided to give myself a bob. That was actually more of an emotional moment than buzzing my hair in the hospital. With the help of my mother, we braided my hair and then chopped it. I had long brown hair. I didn't want to "see" those long locks of hair on the hospital floor. Admittedly, I kinda liked the bob!
I began losing my hair one week after my last TBI treatment, which happened to be the end of my second week at the hospital. So I was admitted on November 26th and around December 10th is when I noticed it. On December 12th, chucks began to fall out and so the next day I decided to buzz it. After it was buzzed, the little pieces continued to fallout for the next 2 weeks. It didn’t happen all at once. But once I shaved it, it was much more manageable. I went home on December 19th and my hair continued to fall out through the end of December. The latter half of December was also when my eyelashes and eyebrow hairs fell out too. So the entire hair loss process took a few weeks.
What was it like having a catheter? Were you nervous about getting an infection? Did it leave a scar? When did it come out?
My catheter was placed on November 24th via an outpatient procedure. It was really strange seeing something like that on you - and it was SO itchy! Yes, I was pretty nervous about infection. I tried not to think about it which was hard but I realized by the end of my hospital stay, they’re actually pretty resilient little contraptions. As long as you don’t touch it, keep the skin around it clean, and don’t get it wet - you shouldn't have any issues. Something that did take time to get used to was how the cords and tubes can easily tug on it if you’re not careful. So I always tried to make sure my lines had enough slack in them when I walked around.
Between the catheter, IV lines, and IV pole, showering was always a process. At my hospital they made something called a “window.” Essentially it was layers of plastic wrap in the shape of a square with a medical tape border that you would stick to your skin around the catheter. You still had to be careful though - it wasn’t entirely waterproof.
My catheter was removed on December 27th and it was such a huge relief. Removal was simple. They had me lay down and take two deep breaths, the nurse pulled the catheter, and it was out. Totally painless. They placed a thick band-aid over it and a weight to help create a clot. Once it scabbed over, I was able to shower a couple days later. You'll see in the photo below that the area did scar. The two scars to the left and right were the the stitches and the center scar was the catheter.
Were there any scary moments during your hospital stay?
I didn’t have any scares but I did experience these really awful nose bleeds which were very frustrating. Normal platelet range is anywhere between 150,000 to 450,000. However, due to my treatments, my platelets were under 15,000. Platelets are designed to clot our blood whenever we get abrasions, or in this case, a nose bleed. Because my levels were so low, some of my nose bleeds took two hours to stop. There were a few instances where I needed platelet infusions to help stop the nose bleeds. Another reason this happened was because the hospital air was extremely dry and they used positive air pressure system. Essentially, the air is was constantly cleaned and filtered - no amount of humidity is present. These factors also contributed to the nose bleed. One of my nurses directed me to swab A&D ointment in my nostrils before bed. This actually helped! Regardless, once I was home, the nose bleeds
stopped.
Did you experience any pain?
Everyone experiences pain differently. Praise the Lord that my experiences were generally painless despite some moments here and there. Usually around 5 o’clock, the nurse would give me an injection in the back of my arm. Those injections always stung. Following those injections, I would sometimes get bone pain. It wasn’t extreme, but it was noticeable.
Something you may experience is mucositis, which encompasses many things–mainly mouth sores. Essentially, the bacteria in your mouth and your entire digestive tract reacts to the treatments and the bone marrow transplant. I’m simplifying the science of this side effect but the actual effect is painful. Some people may experience mouth sores that travel down the throat, some will have a dry, chalky texture in their mouth, some will have a painful sore throat, some will experience pain down their digestive system through their esophagus, and even going to the bathroom can be painful. You might also experience discoloration of your mouth. My hospital provided me with a special mouthwash and they directed me to use it at least 6 times a day. And that’s what I did. Whatever your hospital provides, I highly recommend you follow their directions to prevent mucositis.
All things considered, my mucositis was very mild. I credit it to the mouth rinses, drinking water, and prayer. My mouth turned white and I experienced the chalky sensation for several days and I lost my sense of taste. About halfway through my stay at the hospital, after my white blood counts were down to 0, I experienced a sore throat. It only lasted a few days; however, it was the type of sore throat that hurt upon moving. It consisted of short, bursts of pain. Thankfully though, a couple days later my white blood count began to rise, and as it did my mucositis cleared up. The human body is truly amazing.
What was the food situation like?
I tried to eat the hospital food as much as I could but about a week in, my appetite changed. (By the way, this is also when my sense of taste began fade. It slowly returned around a month after my transplant). But anyway, at the hospital, prepackaged snacks like chips and granola bars became a go to. All transplant patients are placed on an “anti-microbial” diet. Essentially, any food that could harbor bacteria was off limits and/or has to be thoroughly cooked. Produce that has a skin is fine, but fruits like berries were avoided. If I wanted to eat salad or other vegetables, everything needed to be washed extremely well or cooked. Any meals with meat were always well done. I had to avoid things like blue cheese or any other fermented foods. Takeout and restaurant food wasn’t allowed either at the risk of getting any food borne illnesses. About 40 days post transplant, I began to slowly integrate normal foods again. If we ordered takeout, I always reheated it to be safe. By the 100th day, I was basically eating everything in its normal state. However, I was still cautious and still took the extra step if it felt necessary.