Philippines 2012-2013

I leave for the Philippines on Dec10 at 0240. I'll be leaving my news and thoughts here. I'm thinking now that I'll do 2-3 sightseeing trips. Possibilities include Subic, Corregidor and Tagaytay. We'll see. Stay tuned.

Update

My CT scan wasn't as good as I expected. Will likely have a total of 8-10 now instead of the 6 the doctor first anticipated. I'm bummed about that but a lot of people are sending me good thoughts and so I will be positive. Positive that I'm headed for a long remission and this is the way to it. Cancer eat shit!

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Round 3

When I was diagnosed with CLL in April, 2004, I felt my grasp on life was tenuous. I went through all the stages that people do when a loved-one dies. I told God I wanted to live long enough to see my grandchildren in college. I wanted to retire and to travel. I wasn't ready to give up my life. I shed many a tear and questioned God. And He told me he wouldn't give me a cross to bear without the grace to be able to do it. After a month or 2 I progressed and eventually ended up at acceptance. I was so accepting because I knew I wasn't going to die anytime soon. A round of 11 chemo treatments put me in remission, although for a shorter duration than I wanted.

Today as I went for a walk to the bathroom with my infusion pump pushed in front of me, and it came to me that I REALLY am a cancer patient just like the dozen others in the room. It wasn't an "Ahaa"; it was a calming feeling and the realization of a fact from which I've been hiding. It wasn't cathartic; it didn't even last long. I'm not sure I know what it was or why I struck on it. Maybe it was all the prayers being said for me that popped into vision briefly. Maybe I'm wising up. The meaning may become more clear as time goes by. I know because of a recent bone marrow biopsy that my CLL has mutated to a more aggressive form. I've given it a good deal of thought and I don't expect this remission to last long. Maybe God is signalling. I know He walks with me. I just need more faith in Him. Maybe it's time to ready myself. My recent sinus infection showed me how easy it is to catch something while immunosupressed (I had't been around anyone with symptoms) and how it could led to something doctors couldn't defend against.

My eye doctor told me not to give up on my eye. New drugs and procedures enter clinical trials daily. Recently doors have opened to help people with pancreatic cancer. There is also much hope for blood cancers such as for patients with ALL, AML, Multiple Myeloma. Thanks to LLS Team in Training and other campaigns, millions are being raised yearly to go into the fight. I simply have to live long enough for my cure. Easy!

I've decided on a trip in August to reinvigorate me; Im going to Seattle for a few days of geocaching fun where some of my friends will be also. I'm also planning a Santa trip to the Philippines in mid-December. That is if my hair and beard grow back by then :p

Health and happiness be with all for you reading this.

Random Thoughts

Chemo today. Lasted 7 hours while several drugs were pumped into me. All I want to do is sleep and forget the pain in my stomach and the thoughts in my head but I can't sleep. The steroids are fighting the urge to sleep. I'm in a no mans land until they wear off.

One of the drugs, Vincristine, is made from flowers. Hard to believe such a beautiful flower makes such a potent cancer fighter.

Another of the drugs, adriamycin, is from Streptomyces peucetius is a bacterium species in the genus Streptomyces. It can cause irreversible heart damage in a fairly low lifetime dose. In my case the doctor will stop using it after 6 treatments and never again. It has been nicknamed "red devil".

I didn't know about chemo brain 13 treatments ago but I know now it cost me a good job. I could have used it in my favor but the boss was tainted and it wouldn't have worked in the long run. A vary narrow minded and exacting person. New as a supervisor, hopefully, she will mature but I rather doubt it. I heard a phrase today that applies; "I have a great memory but not for long" - another John getting treatment.

I can look forward to several more days of the blahs and digestive issues despite anti-nausea medication; GREAT.

I would love to go to the Tap Root and listen to good music but I just can't get motivated to do it. I really miss Spiff and Melissa Mitchell, the Whipsaws, and Evan Phillips. Miss the beer too! Alcohol ruins blood counts so is off limits as is caffeine.

When I was first diagnosed with CLL, I was told it was indolent and I could go years without treatment except that I had an aggressive form. Friday the doctor said my bone marrow biopsy showed that my disease had mutated into a more aggressive form. I'm not sure that I know what that means other than maybe the Lord will call me home before I'm ready. Saint Peter don't you call me cause I can't go :-P Guess I'd better use each day to the max and not worry about it. Father Tom says God is walking with me on this journey as I know others are but, hey, he's the Big Gun and what could be better? The life of a cancer patient is full of ups and downs just like with anyone else. The ups and downs seem to be more acute in our case. Some can see the end better than others. Some of us know it's out there but then so are other life threatening things. Just keep on keepin on.

I want to go back to the Philippines at least one more time. There are people in the barangay much worse off that me and I do my best to help them with donations to the Church there. Boxes of clothes are very welcome and I should start going to garage sales to find the right stuff in the right sizes. I've been wondering about a box at church and a bulletin entry asking for donations but the need is also here and I don't want to mess with that. So much to do!

Last thought. The life of a oncology nurse is tough! They get to know patients very well and then despite their best efforts the patient dies and a little part of them does too. They have to be compassionate yet tough. I don't envy them but I am extremely thankful for them. God bless them every day and hold them close for it is truly his work they do.

Better Living Through Chemistry

I'm not sure you can say better living comes through chemo drugs but I'm feeling pretty good today. My energy level is higher than it's been in a long time. Getting rid of some of those bad B-Cells has been a good thing. The downside is the loss of good cells and the loss of sight in one eye has been emotional, educational, frustrating, sad. I could have gone through anything but this with ease. I'm unable to put into words how it is effecting me. I pray every day that the sight will come back. I used to shoot left handed, looked through the camera viewfinder with my left eye. It was the dominate and yet most problematic and now useless. Reading is difficult. Proof-reading is tough. Perspective and depth perception are gone. Beauty is marred. But hey! Nobody promised me life would be easy and up to now, and even now I am blessed beyond what I deserve. There are kids in many countries that will never ever have the opportunities I have had. I've never gone to bed hungry nor been unable to provide for my family, so what am I beefing about?

Cancer sucks! No other way to put it. Those who are working for cures are wonderful people. Those who give time, talent or treasure to fight the fight are precious. God bless you and them with good health and a long life!

Chemo #1

Friday was the first chemo session. The same regimen as last time with the addition of adriamycin and on Saturday a shot of Neulasta. Saturday and Sunday were hell. Today is better except for the 100 mg of prednisone. I had an allergic reaction 1/2 way through the Rutuxin. It is supposed to fly in under the immune system with the help of benedril but if pushed too fast or not enough benedril it hits the immune system's radar. No problem, stop the infusion add benedril wait 1/2 hour and drive on. I also only received 1/2 of the Rutuxin. So much to know about this business! My CLL causes bulky nodes and Rutuxin works so fast that they were afraid too many cells would be killed and lock up my kidneys. I had a blood test on Saturday and apparently no problem. The nodes on the left side of my neck that were huge and hard are now barely noticeable. Still no change in my eyesight so I guess I'd better get used to only one eye. I need to be careful to avoid potential infectious situations since my whites blood cells are compromised so if you have a cold or are sneezing, I'll be avoiding you, sorry.

I have no idea how I worked through this last time. I guess I really wasn't at my best and no wonder I had problems! Thanks to my wife and daughter for the help and care they are giving me. I couldn't do this without their sacrifices and love! Thanks to my son for staying an extra day on his layover from Akutan after being away from his family for a month! Thanks for prayers and words of encouragement!

What a life!

Last week was like this:
Monday - Ophtholmologist, MRI and PET Scan
Tuesday - Oncologist
Wednesday - Optholmologist, ENT Doc
Thursday - Port implanted and a biopsy done.

This Week:
Monday - Oncologist
Wednesday - Stitches out
Thursday - Bone Marrow Biopsy and and Echocardiogram
Friday - Chemo Starts
Wow! Did I spend some big bucks! Military retirement looks better every day! I know one thing, I can't wait for a chip that has all my medical data on it so I can blow off all these forms. And now a new form required by Obama, Disclosure of Demographic Information. OMG! Stop!