First post on the new blog. Let’s go chronologically, shall we?
- I decided that, at 28, I should be a grownup and make all the proper “grownup” appointments: doctor, dentist, optometrist.
- I went to optometrist, got new prescription for my glasses. A very standard, grownup-y problem. Ordered my new glasses (I know I could have just gotten new lenses, but I wanted pretty frames too, so sue me.)
- About a week later (hadn’t even gotten my new glasses in yet), I went to optometrist again, due to blind spots in both eyes. This was followed by a trip to an ophthalmologist later that day, who said “It’s just fluid build-up behind your retinas caused by stress. No reading, driving or working until the end of the month.” A less standard, grownup-y problem.
- January 26, still home on “doctor’s orders,” pain in my collarbone, headache, fever and general feeling of unwell-itude prompted a call to Mommy around 9PM to drive me to the hospital. Not feeling very grownup-y at this point.
That night quickly became a blur of blood tests and “Are you sure you’re not pregnant?” and “You need to go to another hospital.”
At the second hospital, I was promptly escorted past the ER waiting room (at this point it was somewhere around 4AM – Mom and I stopped for food on the way), and the team did more blood tests, x-rays, CT scans, MRIs and, my very favourite, a bone marrow biopsy before telling me “Acute Lymphoblastic Leukaemia” was the diagnosis and that I’d be spending the next 28 days in hospital undergoing treatment.
- I started chemotherapy.
- I got a PICC line, which is basically a permanent IV line into my vein, so the nurses wouldn’t have to poke my arm for the daily 6AM blood-letting or for the IV medications and chemo I was getting.
- My hair started falling out, so it got shaved on Valentine’s Day by the lovely Nurse Shannon.
- I also found out that detached retinas (my blind spots) are a symptom of leukaemia but because they are so rarely associated with the disease, blood tests are not taken in relation to the detachment. The more you know, right?
- Because I had complained of a headache when I was first admitted, the medical team was worried that the cancer had spread to my central nervous system, so in addition to the chemo, I was to have lumbar punctures (spinal taps) on occasion. These are also my most favourite things in the world.
I’m sure Google would have a better explanation but basically, they medicated me to no end, threw some dental freezing into my spine, withdrew spinal fluid and replaced it with more chemo.
Then I had to lie on my back for anywhere between 20 minutes and 4 hours – depending on which nurse you asked – so that the chemo could distribute evenly. Usually I would make sure I had a good movie at the ready, and usually it was “This is Spinal Tap,” just for the irony. (Note: I had 10 of these by the end of my hospital stay.)
- At the end of the month I got my first day pass, meaning I got to go home for a night before starting round two of chemo. Unfortunately, this also meant another bone marrow biopsy before I could be cleared for my one-night “discharge.”
Again, Google probably explains it better, but for me, again, highly medicated – much more so than for lumbar punctures because IT GETS SO MUCH WORSE – with oral meds, dental freezing at the site, and numbing patches on the back of my hips. Oh yeah, for those of you who don’t know, they do bone marrow biopsies on the back of your hips, so I was face-down on the bed, sweating and crying and yelling at my mom to tell me a story to distract me from the MASSIVE NEEDLE GOING INTO MY BODY TO EXTRACT THE GOOP THAT’S INSIDE MY BONES. Oh wait, they went into the same hip as they did my first night in hospital? DRY TAP. (That’s what they call it when they can’t withdraw any of the goop aka bone marrow that they need.) What that meant for me? More meds, more freezing, more numbing cream, on the OTHER HIP. I was going insane, my doctor was sweating through his shirt (according to my dad), to the point where another doc had to be brought in to do the biopsy. So after all was said and done, I had two massive compression bandages on my lower hips, I was too dopey to be trusted to go to the bathroom alone, and I ended up sleeping the rest of the day. Tests came back fine.
- I was officially deemed in “complete remission.”
- I started round two of chemo. This was mainly a precautionary round – I was in complete remission but they didn’t want the cancer to come back right away (if at all), so “kill it dead” was the general consensus.
- I also put my name down for a bone marrow transplant, so they tested my only sibling (as per protocol – if the sibling is a match, lucky, lucky me! I can have a transplant in very little time!), but unfortunately, Ben was not a match. So we got my name on the universal recipient list and hoped for the best.
- I was deemed “fit for discharge” but had to go to Cancer Care’s treatment room for fluids and chemo and whatever else I needed a few times a week. No big deal – you get free cookies and juice! I also saw my primary oncologist there, so I never (in theory) had to go back to the hospital again.
- I was told I have a genetic abnormality and that finding a 100% match from an unrelated donor would be “near impossible,” so Plan B was to continue chemo (oral meds and an injection every week) for the next two years with basically the same results as a transplant. Done and done.
April – June 2012
These next few months are kind of a blur of doctor’s appointments and hospitalizations (nothing major: pressure headaches, a fever), but here are the highlights:
- My friends threw a social for me!
- I got a free wig from Cancer Care!
- I got my PICC line out!
- My brother got married!
- I had a root canal.
- I had another bone marrow biopsy that went surprisingly well and didn’t really hurt.
- THEY FOUND A DONOR!
OH YEAH, in May, I was told that they found a 10/10 match for me (remember the “near impossible” line they gave me earlier? Yeah, not so much, apparently). So the big question: Do I want the transplant?
A RESOUNDING YES!
No transplant = chemo for 2 years. Transplant = radiation and chemo beforehand, but no more chemo afterwards.
In order to have the transplant, I needed a central line put in – like a PICC line, but into my chest, not my arm, and with a more direct line to my jugular. And surgery. The PICC was done in my hospital room by an IV nurse, but a central line insertion is considered “day surgery” and I would be under “conscious sedation.” Scary words, considering I still have my wisdom teeth. But they let my mom come into the room with me and I (apparently) made smart-ass comments about the music they were playing, so I think everything turned out okay.
- July 4th, to be exact. Transplant day.
Bone marrow transplants are NOT that big a deal as everyone thinks they are. First, there’s no actual “surgery” involved. My donor lives in a different country. Bone marrow is a less-controversial way of saying stem cells. So basically, I had a very special, life-saving blood transfusion (in addition to all the other blood transfusions I’d needed up until this point and BELIEVE ME there were a lot). It started around 11:30pm on the 4th, and lasted until about 1AM on the 5th. My parents were there, and we were awake the entire time, watching “Back to the Future 2.”
And then graft-versus-host unleashed its fury.
LITERALLY as soon as my transplant was over, I began to feel unwell, so I tried an Ensure to calm my stomach…and immediately threw it up. And then I threw up anything I ate or drank for the next two weeks. All my meds had to be given to me IV because I couldn’t swallow ANYTHING. I developed an intolerance to IV morphine, so anytime they gave it to me, I threw up. Then I started to get better and by the end of July, I was discharged again.
- This time they were going to keep me on the ward in the “Day/Night” unit – this is where I would go in a couple times a week for magnesium, potassium, fluids, whatever I needed, but I had to go through admitting every time. Hassle? Yes. Weirdly comforting? Yes. They would also clean my central line site for me if I couldn’t or didn’t want to do it myself.
- I started to get weird lung/chest pain, similar to the collarbone pain I had when first admitted.
- The pain in my lungs/chest from before? Blood clots in my central line! After some emergency ultrasounds, they took out my central line and stitched me up (my first stitches, ever).
- Getting blood drawn is way worse when they have to do a new poke every time, so the IV team tried SO HARD to get my poor chemo veins to accept hep-locks (semi-permanent IVs in your arm or hand that are good for a day or two). But by the time my second visit with a hep-lock came around, they just had to take it out and draw blood from a fresh vein anyways.
- At some point here I got discharged back to Cancer Care. I forget when.
October – December 2012
- I was still going to Cancer Care for blood work and clinic visits with my doctor for a few weeks before he started to talk about tapering down on my (many) medications. After a couple of attempts at this tapering (during which graft-versus-host reared its ugly head), we all agreed to maintain my meds how they were – at least over the holidays.
- I got my first vaccinations from my regular doctor with more to come.
- I was feeling good – normal, even!
- First Cancer Care appointment of the new year: feeling good! Normal, even!
- Three days later: BOOM! FLU’D!
I spent Sunday at Emerg (with mom, of course), explaining numerous times that I am recovering from a bone marrow transplant and I had a cough, muscle soreness, and trouble breathing. Basically, that I had the flu. They stuck me in a room with a bed that looked, honestly, like an ironing board, for a few hours and then took me for x-rays and a CT scan. Everything came back ok, meaning, if I was sick, it was viral and there was nothing they could do.
- Monday morning: I took my temperature (because I do that on the regular now), and it was 38 degrees (100.2 F). That’s the “fever line” – I was sick. For sure. So I called my mom (obviously), and my nurse at Cancer Care and my mom came over and drove me there. By then, my fever had increased to 39 (102.2 F). So they ran a viral test, and I was admitted back to the ward “for observation.” They ran a few more tests (blood cultures) and ended up putting me on IV fluid anti-nausea meds because I threw up (I mean, it happened twice and I WASN’T NAUSEATED beforehand, but whatever) and refused dinner (baked cod? Really? Who wants BAKED COD whilst in the hospital?). So I stayed overnight and my fever hadn’t come back, so they let me go home Tuesday afternoon with a couple more meds to take.
- Today I got a call from my doctor confirming that it is, in fact, the flu. He gave me yet another prescription to fill.
So here I am, 29 years old, almost exactly a year to the day of getting diagnosed. And here are my meds: