Since my last posting a lot of things have happened. Last week, I mentioned that I saw my Oncologist, Dr. Kasner. Things were looking so good she decided to move up my BMB (Bone Marrow Biopsy) to before Day 30, which was good news when we found out. Anytime we moved things forward it usually means something is working and they like what they see, hence me not spending a full 4 weeks in the hospital. Here is a timeline of last week:
Monday, July 25th– Pretty normal day, I had chemo in the morning, nothing exciting. Still taking my ATRA and all my other meds. Have I mentioned how many pills I take on a daily basis – 24 magnesium pills, 5 potassium pills, 2 anti-viral pills, 2 anti-biotic capsules, 1 ace-inhibitors and some blood sugars pills and injections… all in all, lots of pills.
Tuesday, July 26th – I had my 2nd BMB; this time my anxiety was heightened because it was to determine how my treatments were going. Amazing what some Ativan will do. The first time I had it done back in June it was done by a male doctor, presumably stronger then the NP that was female doing the 2nd one. Since she was not as stronger as Dr. Fellin, she had to dig around quite a bit more to get a good core sample. The actual procedure was not painful since I was numbed up and I took some happy pills, just uncomfortable. BUT the following days…OUCH!!! Moral – Get a dude to give you a BMB, the stronger they are the better.
Wednesday July 27th – Day 30 last day of chemo… my first regime is complete! Since we didn’t have the results of the BMB yet, they usually take 3-5 days to get back from the pathologist my doctor thought getting a bonus infusion wouldn’t hurt, so back to the infusion center on Thursday. Other them not being able to sit in the chemo chair (I got the bed!!), everything was good.
Thursday, July 28th – Bonus day of Chemo and some unexpected news. While waiting for the pharmacy to mix up my chemo cocktail of 16.2 ml/u Arsenic Trioxide diluted into 100 ml/u of saline, my nurse popped her head in and said they got my BMB results back…things looked good and I wouldn’t be getting chemo on Friday or all weekend. Finally, I get a day off from the Infusion Center. Finally I get a day to myself. I had a doctor’s appointment on Monday so we would find out the results then. What a cliff hanger…
Friday, July 29th – Since I was diagnosed with Leukemia, my blood sugars have been out of whack so I went to see an endocrinologist at JEFF. As part of my discharge regimen, I have been on insulin and metformin to keep my blood sugars under control. I have also changed my diet to avoid bad carb choices since I have been home. I check my BS 4 times a day and take insulin before every meal. Being only 32, I really don’t want to take insulin for the rest of my life, so going to see a specialist was the next step. We saw him Friday morning, he was so impressed with my BS control, he said we can begin to decrease the amount of insulin I take with the goal to move to pills only, then to hopefully as my body begins to normalize not needing anything to control my BS.
This weekend was Jenna’s Birthday; so we celebrated the best a leukemic could. Saturday, we hung around the house, got some take-out, got a Rebbox and ended up watching the Hoarders marathon on A&E. Sunday, we had brunch at my mom’s and then dinner at her parents, first time I was in someone else’s house in 7 weeks. It was pretty stressful to be honest; I was concerned about getting sick from being around other people, but a little pink pill made that tolerable by the end of the day. We had a nice weekend, it was good to get out of the house and spend some time with family.
Fast forward to today, Monday August 1, we had a 1pm appointment with Dr. Kasner. First, I got my labs done to see where I was numbers wise then up to see the doctor. We waited for a few minutes for her, but when she came in she was in a great mood, which set the stage for some GREAT news. There is no APL in my BMB, say again? There is no APL in my BMB. One more time so I can fully process it… there is no evidence of APL in my BMB.
38 days after diagnosis, I can say I am in REMISSION. Amazing what modern medicine can do. In the 1970’s APL had a 100% mortality rate, 31 years later I am in REMISSION after 38 days of treatment. AMAZING!!!
So now what – for the next 3 weeks, I will be off, meaning no chemo, no ATRA, just my regular drugs to protect me from my compromised immune system. I am neutropenic again which is expected since I just completed 30 days of chemo, so back to strict visiting rules, back to only cooked foods and generally wise choices not to put myself in compromising situations. My body and specifically my bone marrow needs time to heal. I have set some goals for myself, like I have Phillies tix on 8/16 and 8/18; I will be going to both of those games.
Treatment wise, I will begin what is called Consolidation for the next 28 weeks. Starting on August 29th, I will start 4 weeks of chemo, 5 days a week, then 4 weeks off, coinciding with 2 weeks of ATRA, 2 weeks off for 28 weeks. The goal is to get to molecular remission.
Today was a great day; we are all really excited about today’s news and looking forward to the next phase of my treatment. As a treat, Jenna and I had lunch at a restaurant (first time since I was diagnosed), risky move but totally worth it.
I want to thank everyone for their well wishes, care packages, cards, support, prayers, vibes, visits and messages. So many people reached out to me one way or another, its much appreciated!
Waiting for the time when I can finally say, that this has all been wonderful but now I’m on my way…towards being a survivor…. -Phish DWD