Tag Archives: stem cell transplant

The Waiting Game (The Technical Version)

I’ve always been a huge fan of games, it may be my mildly competitive nature or that I like things that require me to think. In more recent years, gaming has become popular. Both in the world of video games and board games. I can say that I lack the coordination to be a video gamer as evidenced by several Wii mishaps involving Steph and the controller. So, I generally stick to board games. Steph and I get our fill on our two week vacation every summer at the lake. We make it a point to purchase some new games and often play our old favorites in addition to our daily crossword puzzling. Admittedly, however, there are not a ton of two player games so we sometimes have to be creative with the rules. In the last year or so, we have found others who enjoy games like we do and some far far more than we do. We attended a game night here and there and had tons of fun. A few months ago we had a game night at Steph’s with our coworkers and laughed till we cried while playing Telestrations. It is definitely a new favorite. It’s one of those games where a simple innocent vet’s office drawing turns into an animal sacrifice as a result of some creative interpretations or Karen.

 

Games are generally more fun with multiple people. I have never loved the concept of solitaire. Although I have used the deck of cards, that came in bag six of Halley’s transplant activity bags, to play it. At least it is a legitimate game. Right now, I’m in the middle of the WAITING GAME. I’m not exactly sure how I ended up playing this game, but I’m pretty sure it’s because I was voluntold once I signed on the dotted line for my Bone Marrow transplant. I had transplant eight days ago and was told on that day that from here we wait. We wait for your counts to fall to unbelievably low numbers and then slowly rise. The rise is the proof of marrow engraftment, meaning that it took and my new cells are doing their job. So here I am on Day +8 with an all time low for me with a 0.30 white blood cell count, 29 hematocrit, and a 42,000 platelet count. And they can still go lower before they come back up, hence the waiting game!

Once the cells engraft the rise should initially creep up and then steadily rise. I receive Neupogen shots daily to help stimulate the white cell growth factor. And I’ve played this portion of the game with previous treatments, but marrow itself takes longer to engraft and regenerate. I have been told it can take up to fourteen to twenty days. Right now to me, that feels like a lifetime. One thing I have always lacked is patience, even though it may not be that noticeable. So I watch my progress chart waiting for the end game which is a wbc/anc of 1000 for the win and a one way trip back to the Berkshires.

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I am luck that I am still feeling well despite the severity of my counts (which again are on schedule and where they are supposed to be). At least this part of the game is predictable. I’m a bit tired and find that I need an extra morning nap. However, I did just read an article this morning about how important napping is in Europe and has been found to increase intellectual capacity and energy. So I’ll take my nap and consider it an energy boost to keep playing. I get my activity points daily and go out walking in the pod. I head out with my headphones and cellphone to record my steps in an effort to stay active and prevent atrophy. Also, just for something to keep me busy. Yesterday, I actually managed to put in an hour in the pod and walked just over two miles. I was impressed with myself, plus it makes the game more tolerable. Studies have shown that activity helps rebuild faster too. And I keep busy in other ways too, but I’ll be happy when I see my numbers rise and the Waiting Game is over.

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Making It Count

I often tell my Seniors to really make it count in those last months of high school. We’ve all been there and despite the complaining about homework, a specific teacher, or the latest drama those days flew by. I remember the beginning of senior year and thinking I had all the time in the world to get my applications done, to spend time with friends, to be a Senior. And then the months passed as quickly as I could turn the pages of the calendar. As a self proclaimed procrastinator (when it matters), time passed so quickly that I almost missed my acceptance deadline at UMASS and had to take the day off of school to drive to the admissions office and pay my deposit. (Made me seem like a great collegiate candidate.) Senior week went by the fastest and was by far the most important to me. It was that last chance to spend time with your classmates before we all went our separate ways. I have fond memories of graduation rehearsal and Erik and I repeating “right, left, right, left” like somehow we forgot how to walk, opening my eighth grade time capsule at the courtyard barbecue, having a ‘few’ around the fire at Mike’s house. It was our time. I definitely felt this way about these last two weeks, prior to to my stem cell transplant. This is my time and I’m going to make it count.

The last two weeks have been a whirlwind in relation to time. I tried to sneak every person and every activity possible. So I pretty much ‘ran around like a chicken with their head cut off’ and loved every minute of it. I spent my time laughing with friends and family. I went out to dinner and breakfasts (at my favorite spot where Becky and Maria just know my order) with my high school friends, my work friends, my family, my newly acquired friends, and my fiancee. I basically went out upteenth times, probably gained fifteen pounds, and don’t mind one bit because restaurants are forbidden for 365 days. Aside from eating lots, I also got an opportunity to visit the Museum of Fine Art in Boston with my parents where I was able to see Paul Revere mimicking Jack Black (but really the similarities are uncanny).

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 I also had the opportunity to go to a painting party where my new family (Josh’s family) got to meet and enjoy my old friends. It was a blast set up by my amazing soon to be sister in law.

It was a great way to end my thirty fourth year, start my thirty fifth and go out on high note for transplant. My birthday fell during my last full week home. It was low key and perfect, especially since I will have re-birthday soon once my stem cell are transplanted and then I will be 20! It was exactly what I needed to get in the right head space for my year of isolated interactions. I have decided to refer to it as isolation for the time being, so I can at the very least pretend it is a part of my foreign policy platform should I ever get involved in politics. (A social experiment of one if you will.) These two weeks went by fast and I certainly made them count!

Countdown to Major Tom

So I have never really been a David Bowie fan, although that may be because I really don’t know much that he has done other than the movie Labyrinth and even than my recollection is fuzzy. This should be evident considering I genuinely believed that the name of the song or at the very least the lyrics contained the phrase Countdown to Major Tom. Although he was beloved by many as shown by the out pouring of emotion from his fans after his recent passing. However, the song Space Oddity came to mind, not because this post has anything to do with the moon landing that occurred in 1969 or A Space Odyssey, the movie that came out in 1968. Nor does it have to do with drugs, which some speculate the song has some connection to or at least not those drugs. The title or at least what I initially thought was the title seemed fitting for this post because I am counting down to Major Tom or my anonymous 9/10 donor match who I have now assigned this awesome alias.

I have exactly forty three days until the week of April 9th, which is my tentative week of check in for my allogenic stem cell transplant. Now I have to tell you, I envision something from outer space when I think about the actual medical procedure that is a transplant. I’m pretty certain I won’t attempt to wear tin foil on my head to ward off mind control as these new alien cells embark upon my body, through what is pretty much a blood transfusion. After that, what they in the medical profession call Day 0, I have no idea what to expect which in  my world is terrifying. I am a planner. I plan for everything, even things I can’t really plan for. My various Pintrest boards (public and private) can attest that as can my Erin Condren planner obsession. At this point I have a various personal planners, a teacher planner, and now a transplant planner. I have been creating lists of doctors and medications, appointments, and people to contact, and paper work to file, and to do lists to accomplish all of those things. This makes me sound like an obsessive compulsive Type A personality and that might not be untrue. What may be more true is my love of stationary, planners, and paper. And yes I know that is insane, but there are others like me who get oddly excited when Erin Condren comes out with a seasonal box or your new address labels have finally arrived in the mail. So back to my original point before my planner love took me off on a tangent, I have a need to plan. I have forty three days to plan and then the abyss for at least the incubation period while Major Tom’s cells take hold.

I never anticipated how much planning could really be involved. I had to get all of my legal affairs in order. And I do want to say that there is nothing worse than having to talk to your parents and your boyfriend about your last wishes at thirty four or having to ask your best friend to be your Healthcare proxy because you know the previous mentioned parties couldn’t possibly respect your wishes (not that it will be any easier for her). I have to figure out the logistics of how to leave my teaching career for 365 days (worst case scenario) after thirteen years and not worry about my current classes, my future classes, money, etc. I have this need to plan all of it, make videos for the days I’ll miss before my AP  kids have to take their exam, write their letters for the day of, all the little things that I want to make sure they don’t miss out on. It’s not just school. I want to see as many people, sneak in as many road trips, and spend time with the people who have made my life so beautiful and there are only so many weekends in forty three days (because after that, I can only see them as ninja wearing hospital masked faces for a very long time). It’s a lot to take in. All while prepping my house for transplant, redoing our mildew ridden bathroom and cleaning out… well everything. And I can’t forget packing for my 100 day stay in Boston while the transplant process takes place. Did I mention continuing another cycle of chemo, dealing with a slew of other medical related appointments and working and my actual everyday life. It’s a little overwhelming (and the transplant piece is in itself is the same and terrifying and exciting). I may need a planner for my planner as I countdown to Major Tom.

 

Do Not Pass Go. Do Not Collect $200!

You know that phrase “Do not pass Go. Do not collect $200”? That is exactly what I heard when Z called to tell me that my latest test confirmed I still Hodgkin’s Lymphoma despite my treatment. A few days earlier I went under the knife for a second time to have two pesky inflamed nodes removed from my neck area, which had a 50/50 chance of being cancerous again. Z was hopeful that the lymph nodes were angry about something other than cancer, because it was rare to be resistant to treatment. Being the realist that I am, I hoped for the best but prepared for what I was pretty sure the results would be: cancer again. My thoracic surgeon gave my parents the unofficial results of cancer right after the biopsy, so needless to say I didn’t bat an eyelash (cause I still had them) when I woke up and my parents told me. So now I have a larger neck scar, am down two more lymph nodes, and still have Hodgkin’s – so it certainly looked like the chance card I just picked up said “Do not pass Go. Do not collect $200”! 

That particular chance card is often accompanied by the phrase ‘go directly to jail’. And well in some respect the universe just put me in that position. My newly defined refractory status (a person who does not respond to first line treatment or induction failure) lead me down a path of appointments and decisions all ending up at the same location metaphorical jail. I went to Boston, so Doctor J could explain my ‘sentence’. She explained that I would need intensive chemotherapy and an auto stem cell transplant (solitary confinement), totaling a three week hospital stay followed by 100 days of house arrest (isolation period to protect immune system). So like I said ‘jail time’. Doctor J commented that she was surprised to see me smiling despite my sentence, but truly who wouldn’t do time if the end result was a cancer free life. Plus I was a little excited to know that my ‘cell’ could be decorated and I would not have to don the pin striped johnny. All in all my sentence, while harsh, still seemed doable. 

My sentencing doesn’t officially begin until October, but I have a lot to do between then and now. After Doctor J, reassured me that I’d be a hit in the joint thanks to my attitude, I went back to Z for me pre-sentencing appointments. And once again my calendar was full of prep work – blood tests, another echo, chemo school 2, dental appointments and more. So while I didn’t get to ‘pass Go’ and was not fortunate enough to ‘advance to Broadway’ or ‘take a ride on the Reading’ and I definitely ended up paying $200, I do get a ‘chance’ to still beat this thing and like most Monopoly games it’s going to  take a while longer to win.