BMT Days -4 through 6 Summarized, Plus: BMT Day 7, In Which I Am Re-Admitted To The Hospital. (Part One)
Every day since I was admitted to the hospital last Monday to go through the bone marrow transplant process has a number. The day of the BMT, itself, was Day 0. The days beforehand were negatively numbered as a countdown to zero, and the days after Day 0 are obviously numbered using a random number generator, Avagadro’s number, and the quadratic equation. Which has surprisingly led to every day’s number going up by one whole number. Maths is (are?) weird like that.
Day -4. Monday, May 11th. We received a phone call at 7:45 AM that there was a room available for me. We rolled in at about 10:30. Nothing happened until 6:30, when I received my first dose of fludarabine. The infusion took all of 20 minutes and seemed to have no side effects. I thought back to the BMT Oncologist, Dr. Gutman, saying that this should really be an outpatient procedure, but that insurance wouldn’t allow it. Stupid insurance.
Day -3. Tuesday, May 12th. Again, a lot of waiting around. I received my fludarabine at 4:30, which evened out the day a bit more. The long days are broken up by great friends and family texting, calling, and visiting. Thank you, great friends and family.
Day -2. Wednesday, May 13. I received my fludarabine at 3:30. It is my last day of chemotherapy for the rest of my life. Fun fact: Rebecca was with me this time and the last time I received the last chemotherapy with which I’d ever be infused in my life. I play lots of guitar in gaps between texts, calls, and visits. It occurs to me that I’m not blogging. I can’t really think of anything to say, except [crane shot, zooming out slowly and spinning as I yell to the heavens], “Iiiiiiiiiinsuuuraaaance!!!!” I think about all the many countries that had medical insurance figured out fifty or more years ago.
Day -1. Thursday, May 14. My “day of rest,” in which I ponder, but cannot figure out, why the hospital or insurance company would pay to keep me in the hospital for a day with no medical procedures. This literally costs those two institutions upwards of $6,000 (okay, maybe not literally, but I think I remember hearing someone say that).
I may have my complaints (I do!), but there are always things for which to be grateful. There’s Dr. Gutman putting me on a “light induction therapy,” only 1/6 of what many patients receive. His justification? “I could put you on the normal induction, but there’s a 70-80% chance it’d kill you. Honestly, I prefer that the disease kills you rather than any decision I make.” I genuinely appreciate his frankness.
There’s Rachie, who’s been receiving two neupogen shots everyday at the hospital, so that her bone marrow will produce an excess of stem cells. Every day, experiencing bone pain that makes her feel like Tin-Man (her words) and all fluey and stuff, just so she’ll hopefully be able to give me enough stem cells on Day 0. She doesn’t get a day of rest, and she’s gracefully dealing with all that for me.
There were also a lot of friends and family that visited. I really enjoy Krista stopping by with her bass guitar. We kind of jammed, but we both agree we need more practice.
Also, all week, the nurses have been wishing me happy birthday. As my birthday is in July, I am befuddled by this. Someone finally explains that Day 0 is my new birthday. I even get to keep my old one, too! Two birthdays!!
Day 0. Friday, May 15. Rachel and Rebecca head to the hospital at 7:00 AM. Rachel is hooked up to the apheris machine, which is incredibly painful. This machine takes her blood from one arm, spins out all those extra stem cells she’s been producing, and returns the other parts of her blood to her other arm. Thank goodness for Rebecca, who stands by her all day providing comfort and support. Rach was apparently asked several times during her seven-hour-long procedure if she’s in pain, to which she replied, “Yes, but don’t stop the machine!”
I am very lucky to have two such special sisters.
I was initially told that I could not leave the floor, even to go see my sister who was saving my life. I finally talked to the biggest cheese I could find, who gave me permission to go see Rachel and Rebecca. It was a big, fun surprise, but I only got to stay for a few minutes. We rushed back to my room, from where I was eventually taken to radiology to receive full body irradiation.
The process of being irradiated was not bad–in fact, I think I fell asleep during it. However, upon returning to my room, it really hit me. Pain and fatigue. I took some medication and a nap. Before I knew it (4:30), it was time to infuse me with Rachel’s stem cells. What took her seven hours to give took me 20 minutes to receive. Rachel and Rebecca arrived in the room in time for the infusion, but even more importantly, for the call Rachel received: she had given enough stem cells to forgo giving anymore blood the next day. All the stem cells I needed were given and received in one day!
I’m overwhelmed by the worldwide support shown by the wave of orange; people posting themselves in their Reid Strong shirts. I’m shown some pictures and told about others. I don’t have time to look at the pictures yet, because I’m too busy celebrating my birthday with my extended family (my room was bathed in orange).
I’m very lucky to have such a great family.
I owe a debt of gratitude to my friends for coming up with the initial Reid Strong t-shirt concept.
I’m very lucky to have such great friends.
There’s irony to the whole t-shirt drive. My sisters, who ran the drive through booster.com (and raised $6,000 for the Leukemia & Lymphoma Society) had to send an end date for the campaign. Whatever date they chose would lead to all shirts being delivered by May 15, so they told people to post pictures of themselves wearing their Reid Strong shirts specifically on the date they knew they’d all have arrived. At that point–when they picked this random date–I wasn’t even in remission yet. It was a total and complete coincidence that May 15 became Day 0. Thank you to everyone that took part in the campaign and who wore your shirts for Rachel and me. It was amazing, even if it was mixed with a big coincidence.
All right, that’s the end of part one, frankly because I’m tired. We’ll get to positive day numbers in Part Two. Here’s a preview of most of the days: “I went to the outpatient BIC today and slept the rest of the day. Should I be blogging? I should be blogging, but I’m too tired.”
Oh, also (spoiler alert): I got re- admitted to the hospital on Day 7. Friday, May 22. Today.
To be continued…
Tweet: The End Is Nigh
I just finished my last dose of chemotherapy, hopefully forever.
Oncology, Numerology, Boredom.
The oncology floor called at 7:45 this morning and said they had a room ready for me. I checked into the hospital 10:30ish. I got an x-ray, labs taken, and an hour long dose of chemo at 6:05 this evening. I’m not complaining–I’ve been on chemo 24/7 before that made me sick as a sick dog–I’m just finding that there is, indeed, going to be a large boredom factor here.
I noticed something interesting (to bored me) this morning that I somehow missed before.
Wednesday will be my last day of chemo, hopefully forever. The date will be May 13, 2015.
I finished my last dose of chemo from my last fight with leukemia on May 12, 2011.
I was first diagnosed on December 6, 2007.
This time I was diagnosed on January 6, 2015.
When I was diagnosed this year, on January 6, it was the day before the seventh anniversary of my first remission.
I’m clearly not a numerologist, but if I was, I think I could find some crazy patterns to be crazy about here.
Tomorrow and Wednesday, I will do nothing but receive chemo at 6:05 PM. Thank you to everyone that kept me awake today.
Rachel received two shots in her stomach today. They tried to stick her in the fattiest part of her abdomen. Rachel doesn’t have any fat on her body. So she was in pain just from the shots. 24 hours after the shots, she’ll start to feel like she has the flu. Rachel’s actual suffering for me. I’m just bored.
I’m very lucky.
Bone Marrow Transplant Begins Monday, What That Entails, What I Need From You.
Upon going into remission, the goal has always been to give me a bone marrow transplant (BMT). This is an extra layer of security to prevent against another relapse of leukemia. The BMT is basically me receiving someone else’s immune system to fight off any leukemia that’s still in my body or rears its ugly head down the line.
My BMT donor is my sister Rachel. Both of my sisters had registered in national BMT donor databases last summer before we had any idea that I was going to have a relapse in January or that I would go through BMT. This is a great thing to do because a lot of BMT patients don’t have sibling matches and need to find matches from databases somewhere around the world. Parents can’t donate to their children because their genetic makeup is each only half of what’s needed. I’m very lucky that one of my sisters was not only the required six-point genetic match, but a full, 100%, ten-point match and the same blood type (A Positive and we’re positive). This should, hopefully, make the process smoother and more successful. Interestingly, and through no fault of her own, our youngest sister Rebecca is a zero-point match with Rachel and me. We all came from the same two parents (no one was adopted); genetics is just weird like that, I guess.
So go register to be a bone marrow donor–it’s just a cheek swab!
Despite its name, there’s no actual transplantation of bone marrow involved. In the past and at a few remaining modern hospitals, it’s common practice to take a helluva lot of marrow from the donor’s pelvis and put into the recipient’s bones. However, there have been advances in science that make this painful procedure unnecessary. Instead, Rachel will give herself two shots a day of a drug called neupogen for four days, beginning Monday. The neupogen will stimulate her stem cells to overproduce. Stem cells are found in bone marrow, until they become a specific kind of cell and work their way out into the bloodstream. With the amount of overproduction Rachel’s stem cells will be doing, they themselves will spill out into her bloodstream, which is not a place stem cells are used to being.
At the same time that Rachel’s shooting up on neupogen at our parent’s house, I will be admitted to the hospital to receive three days of a chemo drug called fludarabine. I think this is a funny name. Not as funny as blinatumomab, but still funny. I will be receiving the drug for a not funny reason, which is to stun my immune system and bring down my white cell counts. On Friday, I will be receiving full body radiation to top off this process of making my immune system so stunned that it doesn’t fight Rachel’s cells when I get them infused.
On Friday, Rachel will come into the hospital and go through apheresis–the process of taking her blood out of one arm, spinning it really fast so all the different kinds of cells separate, having the stem cells that have spilled into her bloodstream plus her white blood cells removed, and then having the rest of her blood put back into her other arm. The goal is to produce five million stem cells for each kilogram that I weigh (sorry, Rachie). There’s no way to tell how many stem cells anyone will overproduce on the neupogen. She’s the healthiest person I know, but there’s still a chance she may produce far fewer than five million per kilogram, in which case she may have to go back for a second day. On the other hand, some elderly old man might produce more than ten million stem cells per kilogram. There’s just no way to tell until the blood is drawn, spun, stolen, and studied.
The fact that we share the same blood type is really good, because the lab won’t have to clean out her red blood cells from the stem cells and white cells I’ll be receiving. The hope is that within 28 days, it will be possible to measure her immune system having taken over mine. If it hasn’t, the issue is that my blood cells can’t kill leukemia, while hers should be able to beat the living crap out of it.
In surprisingly good news born of the many miscommunications and lack of continuity at University Hospital, I found out today that since I’m receiving what’s considered a “gentle stunning of the immune system” instead of a full-out beatdown of chemo and radiation, I will probably be released from the hospital next weekend. I had anticipated, based on all the information I had previously received, that I would have to stay in the hospital for weeks, possibly over a month. This is great news.
Again, though, don’t let this great news confuse you. Despite what a big deal BMT will be, it will be incredibly boring. I need all the human interaction I can get while going through this process. Text me, call me, visit me (if you’re over 12 and not sick). It makes such a difference with how my days go.
Rebecca will be coming into town tomorrow night to be helping out throughout the week, which I’m really looking forward to; all five of my family members will be together for the first time since last summer when my grandmother passed away. Not only will our family be all together, one of them of will be saving my life. I am lucky to be surrounded by four such special people that have my back at all times. Truly lucky. And truly loved.
May 1, 2015: I Am Officially In Remission.
Friday May 01st 2015, 2:44 pm
Filed under: Leukemia
It’s official, I’m in remission from my second case of leukemia! I just found out a few hours ago. While it still hasn’t totally sunk in yet, I know it’s a great thing. We’ll be figuring out the exact details of my bone marrow transplant next week, but that’s definitely where I’m headed next.
I have a lot more to write, but this is what’s important right now. Upcoming blogs will have more details.
Thanks for all your support in getting me to this point. But please don’t stop giving it! I may be in remission, but I still have a tough road ahead with BMT. Send me a text, give me a call, swing by the house (call first). It all means so much and it all makes me that much stronger.
Tweet: I’m Home.
I think it’s safe to make this announcement. I’ve been home from the hospital for 24 hours and I’m doing fine. I get to sleep in my own bed!
Back In The Hospital.
Friday April 17th 2015, 3:45 pm
Filed under: Leukemia
I was home for 60 minutes last night, spiked a fever and, returned to the hospital. Huge bummer, especially considering what it took to get out of here in the first place. It’s representative of an entire week of annoyance, frustration, irritation, and ridiculous challenges.
This Place Has Some Real Problems.
Tuesday April 14th 2015, 11:09 am
Filed under: Leukemia
Don’t get me wrong, we love the nursing staff here. They’re great and not at all the problem. The problems include lack of communication, coordination, and planning ahead. These are all disciplines that should be mastered by higher-up-types and run downward through the system until they reach me, the patient.
For instance, I had my trifusion removed last night at 6:30 (we’ll come back to that timing), which meant I had to be woken up in the middle of the night for labs so a phlebotomist could take my blood. With my trifusion, blood could easily be taken without even waking me up. This is not a big deal, but it’s a big enough deal to be annoying with all the the other small deals.
And bigger deals, for instance, today, the concentration of my blinatumomab is being quadrupled. There’s no ramping up to it, it just happens: BAM! Quadruple dose! And I’m actually okay with that because I’ve been doing great on the drug. The problem, the quandary that no one seems to want to confront, is that before I go quadruple-steam ahead, I’m supposed to receive another big dose of dexamethasone. Dex is a steroid that I feared would give me pancreatitis at the beginning of treatment. I’m not even worried about that now. I’m worried about how they’re going to get the drug into my body.
Blinatumomab is not supposed to be stopped. It’s supposed to be run continuously for 28 days. That’s just how it is. Before the removal of my trifusion last night at 6:30 (we’ll get to that soon), the blinatumomab was attached to a peripheral IV I’d received much earlier in the day (10:30 AM, to be specific–we anxiously waited around all day to find out when I was going to get my trifusion removed)(we found out at 6:30).
The problem here becomes that I only have one access port in my body at the moment and it’s being used for a drug that’s supposed to continually run, but I need another drug before it can run any further today. The dose of the blinatumomab cannot be quadrupled without me first receiving the dexamethasone. Those are the protocols.
I’ve just been told that I’ll be taking the dexamethasone orally. Okay. One problem solved. Easily. But why didn’t anybody but my mom and I think of this until right now?
Because timing around here is distorted like it’s some kind of alternate dimension. I understand there are other patients and I understand that many are much worse off than me. But when you enter my room and talk to me about my problems, you should be focused on me. And I should not be made to feel bad about this.
Yesterday, my trifusion was removed at 6:30 PM. This was done specially because the IR Clinic (Interventional Radiology, those guys that saved my life from hemorrhagic pancreatitis all those years ago), that normally deals with ports, closes at 5:00. A surgery nurse practitioner came up to my room and removed my trifusion an hour-and-a-half after her shift was done. This was very nice of her.
Except, there’s a rule in the hospital that the IR Clinic won’t put in another port for 48 hours. And 48 hours after 6:30 last night is after 5:00 on Wednesday, the day I was due to go home. So I have to stay until at least Thursday–or some day that the IR Clinic can squeeze me in. Because even though it will have been 48 hours, there’s no guarantee that I’ll get on Thursday’s schedule, which is more fluid than water.
Hospital Update: Central Line To Be Replaced Due To Icky Bacteria.
Sunday April 12th 2015, 9:42 pm
Filed under: Leukemia
First off, the blinatumomab: it’s going well. I’ve not experienced any neural side effects. In fact, the problem I’ve had with it was getting the chills one night. Those were caused by a low-grade fever, but as soon as I took some Tylennol, I was fine. On Tuesday, the dose of blinatumomab will be quadrupled before I go home Wednesday. There’s no ramping up to that dose; word is, if I’ve been tolerating this first dose, my body will be fine with a higher dose. Knock on wood, but I’m actually exceeding medical expectations for once!
Apparently no one knocked hard enough, though, because it was determined on Saturday that my central line needs to be pulled and that I need to get a new one placed. My central line is a port that gives easy access to my blood without anyone poking me with needles. The kind of central line I have this time around is called a tri-fusion. It is three tubes that hang out of my chest, which are connected through a vein in my chest (that I’m sure has a complicated Latin name) to my heart.
Unfortunately, the site where the tubes enter my chest has had a burning sensation for the past two weeks. When I entered the hospital, I was given ice packs and anti-pain medications to relinquish the sensation. Eventually, it was decided to run a blood culture on me. This entails taking two Tabasco® bottle-shaped bottles of blood from my central line (easy and pain free) and two from a peripheral IV, meaning somewhere else on my body. They then compare these Tabasco® bottles of blood to see if something shows up in my central line that doesn’t show up in the rest of my body.
I’m a hard stick–I have rolling veins that present a lot of people with trouble in drawing blood from me. I have to give credit to the phlebotomist that drew my blood, though, who managed to access my blood in one poke. It’s what they’re trained to do. And even though most of them do it well, just the prospect of getting stuck induces fear in me.
Anyway, for some reason, it was decided not to wait for the results of the fear-inducing blood culture and instead send the least empathetic person who works here into my room to tell me in a frank, non-empathetic manner, “we’re going to have your line pulled on Monday.” I don’t like this person anyway, but I believe they may actually delight in delivering bad news to me.
Apparently, there’s a specific kind of icky bacteria that likes to grow through tri-fusion chest holes (even though they’re re-sealed sanitarily every week). This kind of bacteria creates a sticky film as it moves along. The thought (as I understand it) is that since I’m immunocompromised, this bacteria might not grow in the Tabasco® bottle. I don’t fully understand what my immune system has to do with growing bacteria taken from my body and grown in a Tabasco® bottle have to do with one another, but I don’t want the icky sticky bacteria getting to my heart, either. Whether they’re in my line or not, I guess.
Here I wait, anxiously, for an unexpected surgery tomorrow. They won’t put me all the way under, but they will heavily sedate me, just like they do now for the bone marrow aspirations. I found out today, though, that there’s a 24-hour rule about taking out and replacing a central line, even if it’s in another spot. This may mean I won’t get my new tri-fusion until Tuesday, the day that my blinatumomab is scheduled to be quadrupled in dose. The quadrupling produces far less anxiety in me than spending two days having awake–albeit highly sedated–surgery. Beyond that, blinatumomab is supposed to be given continously for 28 days (I go home with it) but taking out my central line will interrupt that.
So we’re back to a fear-inducing peripheral stick. This time, though, an IV. I’m much worse at getting IVs than I am just giving up blood, because my veins are all kajiggered up from the last time I had leukemia because I had multiple PICC lines in each of my extremities that caused clots. When the body gets all clotted up, it does this amazing thing where it creates new vein pathways. Which is really cool, but they’re not straight like an IV needs to be.
Luckily, the hospital keeps one (1) person on staff that can use a tiny ultrasound to place IVs. My IV will be used for sedation and then blinatumomab. I’ll be taken off the blinatumomab for what’s been deemed an acceptable amount of time to have my line removed and then replaced. The attending doctor, whom I like quite a lot, is trying to get these surgeries moved back to back rather than a day apart. I don’t know if she’ll have any success, but I certainly hope she does. I don’t like IVs that are left in or the idea of two days of surgery.
But here, everything’s wait-and-see. So I guess that’s what I’ll do, and I’ll try not to be too (much more) anxious about it.
Reid Strong Shirts For Sale To Benefit Leukemia & Lymphoma Society.
From friends to family. My wonderful friends made these shirts in my honor, which was a huge, wonderful surprise. Now my sisters Rachel and Rebecca are selling them on a site that donates money to a charity of our choosing; in this case, the Leukemia & Lymphoma Society.
Their mission is as follows:
Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families… Our Key Priorities will ensure that: The Leukemia & Lymphoma Society helps blood cancer patients live better, longer lives.
You’ve seen the shirt, now it’s time to get one for yourself!