Eff Leukemia

Initial Symptoms / Diagnosis

Tuesday, May 29th: Rode 14 miles on my bike. Last time I was able to ride for distance.

Wednesday, May 30th: Initial blood work done, suspected anemia, however, I show none of the symptoms of how bad my anemia was presented. Told to come in again and re-do blood work.

Thursday, May 31st: Blood work re-done, admitted to Greenwich Hospital. Blood work drawn up, told symptoms appear to be just a viral infection. Told to stay hydrated, that I was fine, and should see the hematologist for a follow up the next day.

Friday, June 1st: Hematologist suspects leukemia, first words out of his mouth. Bone marrow biopsy performed in office (1st one). Called at ~5pm that afternoon and told I was leukemia’d up.

First Hospital Stay

Monday June 4th: Admitted to NY Presbyterian after meeting with Dr. Roboz.

Tuesday, June 5th: Additional bone marrow biopsy performed, longer procedure to give more aspirate for additional screening tests.

Thursday, June 7th: First platelet transfusion given, hitch-like allergic reactions from my eyeballs. PICC line placed. Chemo started. Idarubisin and Cytarabine administered.

Wednesday, June 13th: Chemo finished. No signs of symptoms.

Sunday, June 17th: First and only fever presented that night. Started on IV anti-biotics, continued for 2 weeks.

Wednesday, June 20th: Day 14 bone marrow biopsy performed (3rd). Results come back as we hoped – leukemia cells gone, blood looks normal and empty.

Saturday, June 23rd: Got a pretty bad head ache, which is normal for me. Can’t take my normal head ache fixers (2 excedrin or 3 advil have always worked for me). Have to take oxycodon repeatedly, doesn’t really help, get nauseous.

Sunday, June 24th: Nauseous from the oxy, I vomit for the first and only time during that hospital stay. Took adavan, settled my stomach, and then another dose of oxy. Eventually the head ache fades, no help from the oxy.

Friday, June 27th: Neupogen administered for the first time, also given Saturday and Sunday nights.

Monday, June 30th: Discharged from the hospital!

First Stay At Home

Thursday, July 5th: Follow up visit with Dr. Roboz in clinic. Blood work drawn, numbers on their way to recovering (10.0 hemoglobin, 66k platelets, 3.7 total wbc, neutrophils ~1.2)

Wednesday, July 11th: Back in the clinic, numbers on the rise (11.1 hemoglobin, 190k platelets (!), ~3.5 total white blood cell count). Bone marrow biopsy performed, this time by a pro. She got through the bone in record time, had great bedside manner (I even missed her do a complete pull because she distracted me with chatter), and she was just generally awesome. Anyone at Presby needing a bone marrow biopsy should request Maurine. She was the best so far. Waiting on results still (as of 7/17)

Monday, July 16th: Headed back into the city, this time to Memorial Sloan-Kettering Cancer Center (MSKCC). Met with one Dr. Tallman, who went over everything we were doing, and just kind of confirmed we’re on the right path. He also seemed to be more positive about sticking with chemotherapy as a cure, as opposed to stem cell, which was nice to hear. However, we still need to meet with Julliet Barker, who is the premiere doctor to see when you have to do an umbilical cord stem cell transplant. With her bits of the puzzle, we might actually be able to make a whole picture and have it be a bit more clear.

Coming Up:

July 18th: Hopeful date to see Dr. Barker about cord blood transplants, and see if the cords that match me will work, and what her plan would be and what my chances are for a cure with them.

July 19th: Tentative date to be re-admitted to the hospital for my first round of “consolidation” chemo. If we end up going with stem cell, I won’t need any further rounds, but due to the fact that I only have cord blood matches (take a moderate amount of time to prepare), 2 months is too long of a time to go from first battery of chemo to nothing. So, this hospital stay will be for 5 days, then will get discharged, and won’t have to go back until I get a fever again. So, much shorter visit. After this round of chemo comes decision time.

Also during this stay, I’ll be meeting with Presby’s transplant team, to go over any new news with what matches I have, how the cord samples look, if my dad is a match for the haplo transplant, and just generally confirm/address any new concerns or info that might be able to help me make my decision.

July 24th-25th: Projected discharge date from second stay in the hospital.

UPDATES:

I have to go back and update all the dates with my hospital stays, but for now, I’m just going to do some transplant related dates because those are the ones I still remember.

October 31st, 2012: Admitted to the hospital for pre-transplant treatment. Consisted of  4 total doses of testicular radiation, 2 doses of total body irradiation, and 3 different chemotherapies, over the course of 7 days. Entirely less than fun, as one can imagine.

November 7th, 2012: Cord blood transfusion. New/additional birthday. Entirely a non-plussed issue.

November 8th, 2012: Haplo transfusion of my dad’s T cells. One needle’s worth, took less than 2 minutes to transfuse.

November 9th – December 17th, 2012: Misery, constant nausea, drug induced hallucinations, and craziness. Easily the worst weeks of my entire life.

December 18th, 2012: Discharged from the hospital. 48 days into transplant process.

December 19th – February 14th, 2012-2013: For the most part, a lot of waiting around, not doing much. For the most part, gradually feeling better and better, less and less nauseous. Unfortunately, increasingly high blood pressure leads to more and more frequent migraines. Luckily, my blood counts are high enough at this point to take the medication I need to take to get rid of them, instead of trying to make do with the utterly ineffective dilaudid.

February 15th, 2013: DAY 100! Bone marrow came back 100% baby marrow, and no signs of leukemia. This baby is a boss.

May 7th, 2013: 6. Effing. Months.

May 15th, 2013: When I actually had my 6 month check up. This baby continues to be a baller, 100% occupying my bone marrow. My immune function is returning on schedule, which is unfortunately slow and steady.

June 1st, 2013: 1. Year. Excuse me while I do a happy dance. Your regular programming may resume.

Upcoming:

Uh. Well then. So, I seem to have run out of particularly important dates to keep track of. I’m still going to MSKCC for check ups and check ins, but realistically, I’ve passed all the major milestones except the ones measured in years. So, let’s mark ’em down:

November 7th, 2013: 1 year from transplant.

November 7th, 2014: 2 years from transplant – this is the major milestone. This is where all of the transplant survival statistics measure to, because if you manage to make it here, it’s a Big Deal(tm).

November 7th, 2017: 5 years from transplant. If I make it to this point, with what’s called “Event Free Survival”, I get to call myself cured. If I relapse before this point, well, it’s been nice knowing all you folks, and I’m glad I could provide some entertainment and perhaps some value added to this world.

No worries, though, this baby marrow is a beast. 2017 I am throwing the biggest party. Everybody is invited. Yes you. Every body. Check facebook.

Last updated: 6/21/13