Day +12. What a crazy few days this has been! From dealing with insane, whole body writhing bone pain (from the stem cells engrafting and growing in mah bones), to making sure my mom gets settled into my apartment (with the amazing help from my roommates Chris and Danika and my sister who flew out here for the weekend), I’ve had quite the eventful weekend! And now, today, I get to go home! Two weeks early!

The past four days I’ve been getting neupogen shots that have effectively acted to “awaken” the new cells that were growing in my bones. In my last post I had mentioned that my counts were on the rise, and boy did they rise! Just within three days, my absolute neutrophil count (neutrophils = the cell type that are the first line of defense against infection) went from <0.1 to 3.47 x 10^9/L today! My white blood cell count jumped from 0.1 to 5.0 x 10^9/L, and my hemoglobin and platelets haven’t significantly dropped at all (they’re usually the last two types of cells to come back in a transplant, so we should see them start rising in the next few weeks).

With these quickly growing numbers and because I live so close by in case an emergency were to happen, my care team decided that I could go home today. I’m excited! Mainly because I won’t have Steve constantly beeping at me, but primarily because I’m so ready to not have to eat hospital food anymore. Who doesn’t like their own mother’s home cooking? Amirite? Oh, and more independence. That’s nice too.

Anyway, my journey to recovery has just begun and I’m still in the very infancy stages of my new immune system, but I’m feeling good and I have enough strength to get back onto this recovery road quickly.

Oh happy day!

Day +10. My counts are on the rise. I repeat, my counts are on the rise. What a glorious day! Today’s the first day since last Sunday, November 1st, where I haven’t had <0.1 x 10^9/L cell counts for my ANC (absolute neutrophil count), monocytes, eosinophils, and lymphocytes. This is great news people because this suggests that the stems cells have engrafted (to some degree), have differentiated, and are now proliferating in my body. I. Am. So. Stoked! All of this waiting is about to start paying off as we expect to see a sharp increase in cell counts over the next few days.

In other news over the past two days, I’ve been suffering from excruciating, throbbing pain in my lower back/sacrum area along with stretchy/itchy feelings in my femurs and other long bones. I know these pains mean that the marrow in these areas are expanding (!) and are hopefully being repopulatated by the new cells the stem cell transplant are making, but geezus, I’ve never felt such chronic incurable pain in my entire life, ever.

The pain in my lower back feels like I’m getting a bone marrow biopsy with every beat of my heart. It’s a throbbing, aching, jolt every second or so. The pain is so jarring it causes me to tense up, despite all of the pain medications I’ve been taking. Seriously unlike anything I’ve ever felt before, and it’s chronic. Hopefully it won’t last for too long. Despite all the pain though, I find solace knowing that pain = growing marrow = getting healthy again. There’s a light at the end of the tunnel! Eyes on the prize.

My mom arrives today! My sister is coming out with her for a few days to help her get settled in. My wonderful roommates Chris and Danika are going to get them from the airport and help them get settled in too. I’m so lucky to have such awesome friends who are willing to help out so much! This will be my mom’s first time in SF, her first flight in 20 some-odd years, and her first major metropolitan area since leaving Seoul in 1986. Needless to say she’s nervous (and I’m nervous too!), but I know things will be alright. After all, SF isn’t that scary of a city, minus the ridiculous rent, rampant sidewalk feces, and glute busting hills. This should be a fun mother-son bonding experience, I think.

Day +8. Counts are still zeroed out. Getting platelets today because that count dipped too low. Got RBCs yesterday because I was super anemic. Began neupogen shots yesterday (and will continue daily) to “awaken” the “new” “immune” “system.” Don’t judge me for being snarky. My patience is running dry.

Aside from combatting the daily boredom, often by watching movies and TV, and useless internet surfing (who even says that anymore?), I’m glad that I’m feeling so much better than last week. There is a lingering nausea, however, that makes each meal a chore and taking every medication labor intensive — but I’ll survive.

I’ve reached the point where hospital food is very unappealing and I struggle to find things on the 8-page menu to stomach for each meal. Honestly, all I really want to eat right now (and until this ravenous craving is satiated) is Chinese take out. Or Korean food. Shoot, I could go for some Pho too, with some Pad Thai thrown in. I’m. craving. flavor. And by “flavor” I really mean umami, the fifth taste. Everything I eat is so bland, and simply adding salt doesn’t make it better. It just makes it salty. Different than umami. I’m asking for a friend.

But alas, I’ll have to wait until I’m no longer neutropenic before even beginning to think about outside foods entering this eager mouth. This could be a few days, a week, a few weeks before it actually happens. Until then, I’ll be cooped up in my hospital room throwing shade at clips of mukbang celebrities as my stomach growls. I digress.

Steve has been quite the nuisance lately. I think he has a chronic attention hogging disorder. He can’t go longer than 90 minutes without beeping and needing attention. The worst is at 3AM. We get it Steve. You’re special. Calm down.

I think this meme very accurately sums up his wailing.

BEEP BEEP BEEP.

Day +5. Most of my counts have zeroed out now: neutrophils, lymphocytes, leukocytes. My platelets have been depleted to a low level such that I’m getting a platelet transfusion today, but my hemoglobin has stayed above 7 since a blood transfusion on day -2 (which is when the serum sickness started).

Sorry for not writing much in the past few days. Getting over the serum sickness was probably, honestly, the worst thing I’ve ever had to do in my life. My days consisted of chronic aches and overbearing nausea, with spikes of fevers sprinkled in between. I cycled between pain meds, nausea meds, with no appetite — the most I could stomach was apple sauce and popsicles and even those got old. A dose of oxycodone, followed by dilaudid, followed by ativan, followed by tylenol, and then more drugs, other drugs, more pills, more bags hung on Steve connected to my octopus arm. Sleeping through the day and night in 60-90 minute intervals only to be awakened by some pain or beeping and then to be put back down with meds (narcotics).

I did a lot of aimless talking, daydreaming. For example, I apparently had a dream where a little old man was telling me how the world was going to end, and when asked what he said, I responded, “It’s just one of those.” Or, I had a dream where I was walking in my work neighborhood where there’s a lot of construction happening and in the distance I saw a construction worker on a building who’s butt, when bent over, looked like the Virgin Mary’s nose. So I did what any sensible person would do, I touched it.

Needless to say, I made it through with flying colors. I’m alive, I’m much much better, and I’m eating more. Now the biggest thing I’m facing (again), is the not-so-irrational fear of getting sick from something since my immune system is gone-zo. Chronic hand washing, water chugging, chap stick applying, doubly scrutinizing something if it’s clean enough for me to even touch (I’ve been religiously wiping my phone with alcohol wipes). Now we play the waiting game. Again.

Halloween was this past weekend. Halloween is one of my favorite holidays of the year, what with the costumes, parties, and yummy fall treats. I had major FOMO this year, but I was cooped up in bed resting all day. Ricky swung by and helped me put together little bags of candy for the patients on the floor. I went around and delivered them to people, in a “reverse” trick-or-treating kind of way.

I was nervous at first, because I had no idea what each patient was going through behind their closed doors, but everyone received the goodies well! It made me so happy to see how happy people were from such a small gesture. 🙂