This post is just to catch up on where we are with my AML diagnosis and treatment.
On Sept 6th, 2010 I woke with terrible low back and hip pain. We had just been to the SD state fair the day before, this could have been just me having overdone it, but I had never experienced pain like this. We were at my parent's farm, a long way from any emergency room.
So I crawled... yes crawled to our van and we booked it to Sioux Falls. Managed to find a Chiropractor that was available. (it was Labor day). Had a couple of treatments, not much improvement. Switch to my normal Chiropractor (Dr. Rick Odland) when he was available. He treated me, but noticed things were not right and referred me to an orthopedist @ Sanford Hospital. Dr. Odland's quick referral probably saved my life.
I had a MRI which detected that the bone marrow in by lower back (spine) was not right. I had blood work done and was then referred to an oncologist @ Sanford. At this time I had a lymph node removed from my neck, leaving a nice scar. (all my lymph nodes were swollen, you should have seen my tonsils) I also had a bone marrow biopsy. OK, not rocket surgery here, I figured out they were looking for looking for cancer. I was expecting something more the lines of an infection.
This all took place from Sept 6 -17th. I had a work Trip to Dallas the 20th-22nd. I was still in significant pain, but went anyway. I was barely walking, sitting was uncomfortable. Even the heavy duty pain killers I had didn't make much difference. I fulfilled my work obligations and we did eventually get the Texas Rangers project. I had some great coworkers (Sarah, Aaron, Mark and Tony) looking out for me.
The next day, Sept 23rd, I had my doctors appointment. I received my AML diagnosis at 9:30am and was in the hospital at 10:30. Evidently my bone marrow sample had been so necrotic that it and the lymph node were sent to the Mayo Clinic to confirm the diagnosis.
At this point I learned that my immune system was so compromised that the doctor told me I was a week or so from dieing from even a minor infection. Here I am flying around on a cramped airplane with no immune system. So began my first round of chemo.
My induction chemo consisted of 3 days of daunorubicin and 7 days of cytarabine treatment. Prior to entering the hospital I had lost 20 pounds. First I had a Hickman port inserted so the chemo and meds could be administered. After my chemo started kicking in, I started running fevers. I'd get to 103, get a huge dose of Tylenol, my fever would break after about 4 hours and the cycle would start again. I was getting as much Tylenol as they could give in a day. I also had terrible heartburn which eliminated my appetite. this went on for almost 2 weeks.
Lots of broad spectrum antibiotics where given, I now had "Infectious Disease" doctors working on me as well. Come to find out, My Hickman had become infected. I was positive for MRSA as well as Aspergillus (a fungal infection in my lungs and liver). Both are very nasty infections. The MRSA was treated and under control very quickly. I was treated for the Aspergillus for almost 3 months.
Once the docs identified the infections, I the fevers ended. In the mean time, my blood counts started coming back. It was October 10th when my ANC (ability to fight infection) increased from 0 to 8. An ANC of 1500 means you can fight infections on your own, when it climbs back to 500, they let out of the hospital. Was a very emotional day to see progress. Unfortunately my fevers kept me in even as my ANC climbed. The fevers ended friday the 15th. At that time my blood work was almost back to normal. Best news was that my recent bone marrow biopsy indicated complete remission. I was sent home early the following week.
In all I had lost over 40 pounds. I was quite weak going home. But started getting back to myself over about two weeks. Round 2 of chemo would be Nov 9th. It was supposed to be a week earlier, but I got the best cold I ever had. Because of the delay, I was able to be present for my son Jonah's birth.
My notes from round 2 of Chemo will be short. I was in from November 9th to December 3rd. Dr Dirabi (oncologist) decided to run the same induction regimen again. This time I only had one day of fevers. Otherwise I felt good the whole time. Andrea brought Godfather pizza & Chinese for me several times. I missed Thanksgiving with the family, but at least I had the promise I'd be home for Christmas.
Round 3 of Chemo started Jan 5 2011. This time it is consolidation chemo. high doses of cytarabine every other day for 5 days. My body is feeling the higher dose after one day, but I still feel pretty good.
Before I wrap up, just a few notes about the first few months of dealing with this.
I was pretty out of it my first treatment, but at other times I've been able to be online, read and spend a fair amount of time playing Xbox. I tire of TV quickly, but between the food network and foodnetwork.com I planned out some great meals for the holidays.
My family and friends have been amazing. keeping up with the emails, and letters has been a wonderful distraction. My close friends at work made a huge (4 foot high card) out of plywood, a huge Chuck Norris on the front, I will treasure this for a long time. Andrea's Grandma, Lovern, has stayed at the house to help Andrea with the kids. We received so many cards and gifts. The staff and nurses of Sanford 6000 level adopted our family for Christmas. We were so overwhelmed by how much they sent to our kids... I'll probably do a separate post on that.
With so much family in Sioux falls, I think I am on the prayer chain at almost every church here. Our extended family has also made sure to muster up prayers from all over. I am so grateful for this...I believe it makes a huge difference.
I am sure I'll edit this to add more as I think of what I missed.
The final thought I want to include is how amazing my wife Andrea has been through this. I am so lucky to have married up and to have such a wonderful family (mine, hers...ours).
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