Saturday, October 29, 2011

home at last...

First let me thank each one of you for the prayers during the last 2 weeks while I was in the hospital. Thank You... Ü

Well, this stay really ended up being my worst. The sores from head to toe were just beginning when I was admitted. I couldn't eat anything or even swallow pills for over 15 of the 19 days that I was inpatient. I was on constant antibiotics, had several platelet and whole blood transfusions, a constant flow of fluids and then anything that my body was low on over the entire stay. My immune system is really low and that is what was keeping me from healing. Because the sores will not heal until my blood counts start getting higher and this stay they dropped very low and at one point my ANC was .0 ! I can't explain how that is possible except I can tell you it was a true measurement of how I felt. I could not come home until my blood started to build so a .5 ANC was my goal and today was the day. If you remember back the ANC is the number that indicates my ability to fight off even the smallest of infections and even though my other numbers as you will see are much higher, the ANC is the measurement of how my immune system is doing.

So now the plan is to go back to on Monday for labs to see if the numbers are still climbing and if I need anything to continue to boost my immune system and then from there I am not sure. Once my ANC is at .75 and my platelets are at least 70, per the protocol, I am ready for the next dose of chemo. This last dose was clearly too high and pushed my body to the extreme, so more discussion needs to be done among the study guru's and I will find out that plan on Monday. 

Anyway, I'm happy to be at home to rest and get back on the road of life. 

Here are my counts...
WBC: 3.5
RBC: 3.49
ANC: .5 hoot, hoot!
Hemoglobin: 11.4
Platelets: 295

Sunday, October 16, 2011

day 30 of delayed maintenance...

greetings from COH???? yes, on Tuesday of this week I ended up with severe side effects from my treatment on Friday, October 7th which was an increased dose of Methotrexate chemo. Well, the Dr. admitted that this dose was too much for my body,

Saturday & Sunday good days, played some pool Saturday and went to the Swap Meet on Friday with a friend. Came home and was tired and decided to take it easy the rest of the day. Well, I woke up on Monday with a fever, throwing up, and throat pain for the whole day and after realizing that it wasn't getting better at home, we headed into the Clinic hoping to get what I needed for the nausea and possibly some blood and then be able to go HOME, instead I ended up being admitted and on my favorite 3 floor for antibiotic treatment and mouth care.

 Since I have been here I haven't been able to eat. I have had the same symptoms up until yesterday, when the throwing up finally lessened. I have lesions/sores from on end to the other and this is the worse case of them that I have had. My throat is so swollen that I can't talk and am unable to take any pills and I have scabs on my lips, gums and even my eyelid. All of my medications have to be IV. The antibiotics cause me to get what that call Clostridium difficile or C diff & mucositis (you can click on those if you are curious) c diff is basically and infection in my stomach which causes another whole set of issues on top of the ones that I already have. It seems like the circle, never ending. Treat one problem, create another treat that problem create another problem, and so on and so on. To add even more to the situations it looks like I will be here for at least another week! This is truly what they mean when you see a CANCER SUCKS bracelet or sign.
Today, the fever is gone as is the nausea and I am looking forward to my throat getting better so I can start eating again and then get the heck out of here.

Just want to say "Sorry, to my Tuesday and Wednesday night Pool Team. I let you down and I want you to know that I am sorry that I haven't been there." Send me a text or FB me with how we do this week. I look forward to playing soon.

This is one of those "not so good news" blogs, just wanted to keep you up to date on this journey.


Here are my numbers:
WBC 1.6
RBC: 2.54
Hemoglobin: 8.8
Platelets: 53

Tuesday, October 4, 2011

day 18 of Delayed Maintenance...

Let me first say, that it is nice to have my ghost writer back (mom)! As some of you may know, she was trying to secure a 50K Grant and has poured her heart and extra hours into getting votes for it. She is now in the "wait and see" stage. The final answer will come on October 23rd. So thanks to all of you for waiting on this update.

Here is the readers digest version of the last weeks. I did ended up getting my final dose of chemo for the Delayed Intensification I and then it did take a long time for my counts to recover before starting Delayed Maintenance. Basically what happened is the Study Guru's had to have a meeting and make a decision as to my best care. The PEG that caused all of the problems in August also played with my platelet count and it took over 3 weeks for my platelets to get to the level required in order to start this phase. 

The decision was made to stop the use of this PEG chemotherapy drug which is a part of the study because my doctor and the Guru's want to keep my liver as healthy as possible for my future and the possibility of needing a Bone Marrow Transplant. My protocol called for 4 more doses of this PEG chemo and it is known for irritating the liver and causing the trouble that I had, which we now know was a pretty serious reaction. There is good and bad about losing the use of this study drug. The bad is that it is one less drug/bullet to fight the cancer which may or may not change to course of my treatment success and the good is, that as my brother Kent said, we dodged a bullet and the chance of this drug causing a even more serious and long term effect on my liver. So the way I see it is "it is what it is" and God IS STILL IN CONTROL!

My platelets just didn't seem to want to bounce back and took their own time to recover from a low of 19 on September 6th. Mom and the nurses were kidding with me and saying to turn the switch back on and to quit messing around Ü so I did. On the Sept. 8th they were 41and on Sept. 15th - 81. I was finally ready to start on this phase of treatment and this schedule is every about every 10 days, each dose increasing in strength but I do NOT have to go back for any appointments in between treatments. Woot ! Woot! 

So, I have been enjoying playing pool and am now playing on 2 different teams and have been playing in tournaments in local cities and over all am feeling pretty good. I have to admit not having to go to COH as often, has been like a breath of fresh air. 

Here are my counts as of September 27th...
WBC: 2.8
RBC: 2.99
ANC: 1.3
Hemoglobin: 10.8
Platelets: 164

Again, thanks to all of you who continue to pray for me and my family. Until next time and much sooner that 6 weeks, blessings...