An Update and the Frustrations!

The last 3 weeks have flown by. It was great to be free to do what I want, well to some extent.  In the first 2 weeks I was at the Cancer Center 3-4 times each week. They were closely monitoring my blood levels and its chemistry. For the last few weeks it has shown that my blood has continued to recover, and my critical cells are almost all back to normal range and ready for another round of chemo.  They also like to talk about my stools A LOT.  I'll just leave this here.....  

FYI it's a milk duds kind of day when you're taking chemo...

Thought this was interesting.....

I checked back into the hospital on Sunday January 28 and immediately started chemo again.  This round included 2 days of Cytoxan followed by a day off (Tuesday) and then 4 days of Busulfan.  I have currently completed the Cytoxan and, as of today, I have finished the Busulfan.  GOD WILLING, I am done with chemo!  I did have some nausea the last couple days due to the Cytoxan, but the doctors have done a great job of getting my anti-nausea medications adjusted to counter the effects of chemo.  It is too soon to know if the chemo has done its job, but all blood work shows good indications that my immune system is nearly wiped out.  Once my immune system is wiped out I will be ready to receive the transplant!  This is scheduled for Monday the 5th and it will be a day that will be celebrated as a second birthday, and a new lease on life.  I am grateful for my brother, Sean, as he has begun his process to donate his stem cells to me.  He began his shots Thursday which will cause his body to over produce stem cells so they can be harvested and transplanted. I cannot wait to get this transplant!  It will be the beginning of my official recovery!

I have spent my 2 weeks off getting moved into my parents, finalizing insurance and Social Security before I was too far into chemo to want to deal with it.  Dealing with insurance and our government have by far been the most frustrating part of this process!  My insurance, through my previous job, took a large jump in cost (COBRA) due to me having to leave my job and on top of it the coverage changed to something much less than it was in 2017.

The hospital has been great and stepped in to help absorb some of the coverage that was lost due to the insurance changes on my COBRA policy.  I had to carry this policy in order to receive a transplant.  KU would not offer a transplant unless I was covered by a major carrier and not a government program or insurer.  After many phone calls and applications, I did also qualify for Social Security Disability, but that won’t pay a dime until sometime in August when this is nearly over.  With all these frustrations there have also been many friends and family that have rallied to offer their support emotionally, mentally, and financially to help get me through these times and I cannot express enough appreciation for these people.  Cancer is not an easy disease to fight mentally, physically or financially but the people in my life have certainly made a difference. 

As I come into the beginning of my official recovery period I look forward to what is ahead.  This experience and time spent in the hospital has really opened my mind up and it makes me excited to get back to work (wherever that maybe, I’m looking).  It is still a ways off as summer seems so far away but its never too early to start dreaming of the day!

1-14-18 Update

Sorry for such a delay between posts!  I was waiting to see how the week would end before I posted.

Since last week, I have been waiting for my blood to recover from the chemo.  Last Tuesday they told me that my ticket home was my ANC (Absolute Neutrophil Count) reaching .50.  On Tuesday it was finally measurable and they got a measure of .34!  Normal range is 1.8 - 7.  They continued to climb through the week and reached .40 on Thursday.  At this point I was expecting to go home the next day (Friday) because they were so close on Thursday.
The nurse come in Friday morning and told me the at my ANC was at .32 which meant I wasn’t going home.  At this point I was packed up and ready to go; her news was a huge letdown.  Aware of my disappointed reaction, she told me to “wait and see what the doctor says.”  That morning I was also needing blood due to my hemoglobin being low.  The doctor finally got to my room about 9:30 and told me he was re-testing me since I received blood and he also didn’t feel the ANC was accurate.  He was as shocked as I was that it fell.
After redoing the labs, my measures came back at .92!  I was going home!  They released me back to the “free world” on Friday at 3PM.

I am loving this break.  It’s nice to finally be home after spending 25 days at the hospital. I should be home for the next 2 weeks before starting the transplant process.  I am pretty anxious to get this going. The 2 weeks off will be nice, but at the same time, I want to get this over with.  I am more nervous about starting this round over the first round.  The first round was great, I can't complain about any of it. It was far easier than I ever expected.  I feel like this next round isn’t going to go like that.  I am hoping for the best, but I’m ready to for worst it can throw at me.  I haven’t got any dates on when the transplant will start.  I’m sure they will be working on that Monday.  In the meantime I am going to enjoy my 2 week break and I will update once I have more info about the transplant.

1-4-2018 Update

Another uneventful week!  I finished chemotherapy on  December 27 and was told that some tough days would be ahead of me, the doctors made sure to remind me of this daily.  Naturally, I was nervous for what was to come. They warned me that extreme fatigue, fevers, nausea, and chills are the most  common side effects of the treatment.  I laid down every night wondering if tomorrow was the day it would hit. A full week went by and I was still feeling good.  I didn't understand why it hadn't hit me yet. 
On Monday, the doctors came into my room like they do everyday and told me the window for the "dark days" of chemo was past us.  I never experienced any symptoms other than Petechiae, which is little red dots on the skin caused by low platelet counts.  I am also having issues with my appetite, but I am getting something in me everyday.  God was good to me! The doctors said my body handled the chemo better than most patients.  I am still in shock that I escaped the roughest part of chemo.
 On Tuesday I had a bone marrow biopsy to see if the chemo worked.  The goal was to have "Empty Marrow."  Empty marrow is basically cancer free bone marrow.  I found out today that the marrow was indeed "Empty"  and we are on track for the transplant.  As soon as my blood counts recover from chemo I will be able to go home for a couple weeks to give my body a break.  Currently, I am back on oral chemo which has no side effects.  I also started to lose my hair this week and will be shaving it off  to avoid having hair everywhere. 
Thank you for all the prayers-- they are working and I am grateful for all the support!