Tag Archives: allo

Off the Cancervation

I was able to come home after eighteen days post transplant and twenty five total days on the cancervation / hospital. My time there was well spent. I was in one of the best hospitals in the nation with round the clock care. The nurses were phenomenal and I can honestly say that I was actually sad to leave some of them, which caught me by surprise. I didn’t anticipate making friends while I was there (although I hoped), but that is exactly what happened. I was able to connect with my nurses and one of the PAs on a more personal level; we talked about life, family, wedding stuff, tv, books, podcasts, etc. I think these conversations were an integral part of my quick recovery. I went into the hospital thinking that I just had to make it through and planned on doing that with a smile, when possible. Luckily for me it was never not possible. Like Doctor J said, the universe owed me one. It turns out that a small percentage, between 5 and 10%, of people undergo this process without contracting neutropenic fever or feeling miserably ill. So for once, I was on the right side of the numbers game. Feeling well with the exception of being tired allowed me to stay positive, keep busy, and pass the time. It really did go by much faster than I anticipated. Once my ANC (Absolute Neutrophil Count) started to rise, it did so quickly and the protocol stated that two days of an ANC over 500 qualified for discharge. Sunday was my second day over 500 and Josh was able to pick me up and take me home.

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But before I could leave the cancervation, I had to undergo teaching so that I could thrive at home under my new guidelines for life after an allogenic transplant. I met with one of my favorites first, Ashley, who taught me all about well pretty much everything. It was easy for me to talk to her about anything and everything, which was the case throughout my hospital stay. She was so knowledgeable about everything, which really helped in terms of getting comfortable with going home. I didn’t want to be nervous about being out of the hospital, I figured Josh would have that covered. And thanks to Ashley and Mikaela (the fabulous PA I got to know who did my med teaching), I wasn’t nervous at all. I also met with nutrition on the day of my discharge. I wanted Josh and his parents to be there since I knew Adrienne may have questions and Josh would be most impacted by the food piece once I was home. Once the teaching was over, my chauffeur (wheelchair service) arrived and I left the pod (masked and gloved) and the cancervation for the first time in a month.

I was so excited to see the not so sunny sky and be out of my room. Josh and I talked about the rules we would need to adjust to on the way home, but mostly just how happy we were to be together no masks. I couldn’t wait to see Jax. He ran circles around me at ninety miles per hour. And once I got inside, my parents were there and even though I saw them a week ago it was nice to see them at home. We all unpacked my things and got settled back in at home. Josh took the next day off and we lounged at home.

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I am so incredibly blessed to be here, to be home, to have this life, and to have had so many people in my corner throughout this process. While I was in the hospital, I received so many cards and messages from so many people and I have no words to express my gratitude to all of you. Thank you from the very bottom of my heart.

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New to Me…

When you are little, everything is a new experience. The first time you (insert pretty much any activity here). The difference is that the majority of people don’t necessarily remember those new experiences if they occurred within their first three and half years. The inability to remember things prior to around this age is called childhood amnesia by scientists, and thought to be the result of the absence of language skills. According to studies, females tend to have an easier time recollecting earlier memories than their male counterparts. The gender difference often lies in communication skills that develop early on, females tend to tell elaborate stories about their days beginning early on allowing them to make connections to their memories. I know I was definitely one of those girls that would recap every part of the day at the dinner table and can generally remember the details of my younger years. My ‘sort of’ brother/ oldest friend always states that he has virtually no recollection of our childhood years. So maybe there is some accuracy to the study. Regardless, right now everything seems new to me. After all if we go by age of my stem cells they are only fourteen days old, which is definitely new to me.

This stem cell transplant experience has been an interesting one and not at all as I expected. I’m not really sure what I thought it would be like, but I anticipated a more caught somewhere between ‘hope and hell’ kind of thing. So much of what I read, heard from my support group or came as a disclaimer from my doctors made this experience sound overall horrific. Now I’m not saying it has been easy in any way but it has not been horrific either. I managed to keep myself occupied and make some new friends along the way. I have also begun an exercise routine in hopes of maintaining strength and shifting my new stem cells to a healthier lifestyle. I started off walking a mile and have since gone to two miles out in the pod. Walking in the pod isn’t exactly scenic so I requested a stationary bike to add to my new routine. I met with PT and was off and peddling. This new level of dedication and consistency is certainly new to me. And I like it, also new. It has been a long time since I can sincerely say that I enjoyed exercise, not since Steph and I took up running one Fall several years ago.

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This new experience has also led me down a path of relaxation, albeit forced, that I am unaccustomed to. I tend to be a bit of a workaholic and have primarily focused on that over the past twelve years, so this forced break is both new and a little scary for me. In the last three weeks I have watched countless hours of Home and Garden TV, movies, a whole Netflix season, read a whole book in a day, scrapbooked and colored. I have to say though that I don not find coloring all that relaxing despite the hype it has gotten over the years. I find that I get stressed out if my picture isn’t perfect. So I may need to practice “letting it go” and “coloring outside the lines”.  I think finding new hobbies and ways to focus my attention on other things may be rejuvenating and actually help me reenergize for work when I can return next year. I may also need to get accustomed to napping, because on days like today I’m exhausted.

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All of the medical ‘stuff’ is new to me as well. It may feel like I’ve been working on my med degree for the last three years, but this experience has led to many firsts. I needed platelets for the first time and they look like orange juice. Creepy and interesting. Apparently they can also have a green tinge if a female on birth control donated them. Again creepy and interesting. I have learned all about cell growth and their functions. My waiting game has officially ended. My cells began engrafting yesterday and by today I had 110 neutrophils or new cells created by my new stem cells that will contribute to my new immune system. I have to say that I am very excited about it. I’m still treading lightly and am cautiously optimistic because there could be snags related to gvhd or graft versus host disease along the way, but for now so far so good. I’m hoping to be home sometime next week as a result of my new cell growth. But before I get to leave, I have to undergo a series of classes with the PAs, nurses, and nutritionist to learn how to get back to life as an allo transplant patient. In many ways I’m excited about this new phase and am truly blessed to have the opportunity to get a chance to start new and the support of so many to help along the way! Only this time I’ll be able to remember all of these new things, even in the next three and half years of my infant stem cell life.

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#PODLife

Now that I have been here nearing a week, I am getting the lay of the land. And from what I can tell, in many ways it functions like college. On Day One you lug your luggage to admissions and obtain your room number and allow your luggage to be tagged. The difference is that as an adult we could afford valet parking, which gets us a little closer to the actual admissions area rather than doing the hike from the furthest parking garage with the rest of the newbies or commuters. Another bonus is that the admissions staff at the hospital takes your luggage to your designated living space, while you undergo your first activity. Maybe someone who went to a private college where this occurred wouldn’t see how this was anything special, but I went to UMASS and lived on the 22nd floor of a tower and my roommate and I only had one trip a piece for the elevator and about a zillion bags. So this time having my zillion bags brought up for me was like winning the door prize.

My first activity (putting in my Hickman line) ran over like a bad lecture about Student Living and I didn’t arrive to my room until the evening. So my bags were all jumbled in the corner of my cramped new space. I was too exhausted at that point to care, but it was oddly reminiscent of my corner room my freshman year. Freshman year, my roommate and I landed a corner room, one of the four worst rooms on the twenty second floor of the tower. The space was so small that we had to loft a bed and stack our desks so we didn’t have to climb over other furniture or each other. This room wasn’t that bad, but I definitely had to be acutely aware of my maneuverability. It had a similar view to my college dorm as well, both were of the building next door. The night nurse told me not to get too settled because I would probably move in a few days, which I was able to do. And my new room was amazing better than any z room UMASS had to offer. It was also the room I was shamelessly scoping out during my daily laps in the pod (instead of the quad). My day nurse (who is awesome) told me on Easter that my new room was ready and it had a surprise waiting in it and boy did it ever. My soon to be mother in law and pretty much all the nurses on the floor helped me haul my luggage three doors down to a room with a much nicer view and an even better 50 inch flat screen television. It was a donation from a community member and it circulates throughout the hospital. I’m glad to have it for my stay, it would have been seriously useful in college, especially when the Sox were on. Thanks to Adrienne, I unpacked and officially settled in to my new residence for the next month or so. The picture went up, drawers were stuffed, toiletries set up in my private bath (again something I wish I had in college). All in all, my spacious new digs were an added bonus.

Just like college, you essentially follow a schedule that you get credit for. The big difference is how these credits are calculated and used. One set is accumulated over four years for graduation the other over your stay for discharge. In a collegiate environment you get credits for grades, here you get credits for being an active patient. One who gets up and does laps in the pod (I try to do at least 30 minutes a day), one who eats the amounts preset by the dietitians, and drinks the desired amounts of fluid to avoid secondary issues. They credit the amount fluid you intake and the amount that is voided. I mean that literally. Every time you use the ladies, you pee into the hat and the amount is recorded. Not something I ever thought I’d discuss publicly or receive credits for. You also get points for mouth care, taking your meds, etc. All of this helps build your transcripts (patient history) but the blood work numbers will be the deciding factor on when you can be discharged. I like to think of them as the final.

As of right now, I get up around 5 and begin the mouth care regimen, wait for my vitals and morning meds, and then take a walk in the pod. It’s an easy phys ed credit. Walking for 20 minutes individually or dancing if you have your partner (Issac Victor Pole – I.V. Pole).

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After that I have someone tape up my hickman line with what is basically press and seal Glad wrap so I can shower. Showering is my absolute favorite part of the day, because you get some real privacy (unlike in college) and because you are free from the pole. I get dressed in one of my individually pre-packed outfits that is comprised of pants, a tank top, shirt and coordinating headscarf. Then I’m ready for the day, I find things to do to stay busy like crossword puzzle with Steph via speakerphone, talk and text to my family, chat with visitors, color, grade, draw, etc. I order room service, although the food quality is similar to the dining hall of most campuses. At night, I FaceTime with Josh and Jax and get bed ready. I’m usually in bed by 8:30.

I’ve had my chemo cocktails for the last five days in a row and I can say the drugs here are better than in college, mainly because they prevent you from the hangover that follows a night of partying. This morning I had full body radiation and feel like I laid out in the sun all day. I’m just as tired as if I had done that and laid out in the quad in the nice spring weather. So today, I’ll get some rest because tomorrow is my the big day. DAY O, when I get my new immune system! And then I’ll be twenty, and ready to relive my college days?

 

Choosing Life…

All families have shared stories that are passed down over the years. They are often endearing tales of resilience, camaraderie, tradition, or other staples of family lore. Think Amy Tan’s Joy Luck Club. In my family one of my favorite stories is of my great great grandmother who purchased a beautiful hutch hand crafted out of oak. It stood just over six feet tall and was half as wide. She did not have a vehicle when she arrived in this country in 1908, not a huge surprise since Ford didn’t become a household name until the twenties unless you were more affluent. However, she was determined to find the means to bring the hutch up one of the steeper hills in the Polish section of town and acquired a wheelbarrow with which she carted her beloved hutch up the hill in. Sheer determination and blind stubbornness attributed to the success of this particular mission. I have always loved that story and have heard it told by my Babci (my maternal great grandmother), my Dziadziu (my grandfather) and my mother. I always felt comforted knowing that my stubbornness was inherited by the likes of this strong willed Polish woman. My family and friends frequently comment on my stubborn nature and up until this point, I believe it has served me well.

Today I went to Boston to have my options presented to me, regarding my next steps in my cancer journey. Now in reality, my options were already presented to me informally, but my stubborn nature refused to accept them. I wanted options that I could live with, options that seemed less drastic, less severe, less daunting. I dug my heels in for as long as possible, delaying a decision until these options were laid out on the table. And today they were. As it turns out I have no options. I can not do the transplant and accept that my cancer will be fatal to me within the next one to three years definitively or I can have an allogenic transplant with no guarantees. I crave certainty in life and prefer well laid out plans. I have a multitude of planners to prove it. So the part about not having guarantees does not sit well with me. What they know is that people in my situation (post checkpoint inhibitors like PD1) have a 20% mortality rate, 30% success rate, and 73% non relapse rate after a year if you survive (which is significantly higher than traditional allogenic transplants). Thus if I have a transplant and survive the process, I may live eighty four years (the transplant specialist’s number, not mine) versus not seeing forty. Therefore, I have no real option. I have to choose life….despite that it is not guaranteed nor is the quality of the one I am left with. I want more than anything to be stubborn in this moment and hold out, rather than face the uncertain terms of death, graph versus host disease, or any other slew of potential complications, but I can’t. I owe it to myself, to Josh, to my parents to at the very least try. As my dad said, you have to let it go and have faith in God… on a wing and a prayer. And I have faith, I do. But the thought of signing on a dotted line to proceed with a plan that could kill me is difficult to swallow.

Earlier this week, when having a conversation similar to this one with my local oncologist, Josh got upset. He hadn’t realized that we were potentially talking about my being able to maintain as I am right now for a matter months rather than years. We both think maybe he realized, but either chose not hear it or accept it as reality. I commented to him that it was okay that he was upset and that it was just that his dreams die slower than mine. And he replied that no person should be able to say that with conviction and yet I did. However, tonight I sit here with tears streaming down my face wishing my own dreams would stop being stubborn and just let me accept what I have to do, without feeling like I am going to have to forfeit the life I always envisioned for myself. The adage that “expectation is the root of all heartache” is very real. Shakespeare’s tragedies repeatedly prove his words. I have to move forward with this decision to choose life, all the while accepting that I am choosing a life that may not be the one I expected.

What I do know is that I will use my strong stock and stubbornness to fight and rid my life of Hodge all together (hopefully). And besides it will make one hell of a story to pass down!

(A story that I will have time to write when I am forced into a version of solitary confinement for at least a year.)