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!

Chemo

I start chemo this week. I am well advanced and my doctor wants to start ASAP. Will be CHOP-R and I will have a bone marrow biopsy to stage on top of the biopsy I had Thursday. Not happy about a BMB! It is what it is!

2/2

Busy day: started at 7 at PAMC Heart department for a medi-port. After that procedure was a biopsy to see if my CLL has mutated to a more aggressive but cureable form of leukemia. This is a possibility but not likely. The combo of chemo drugs is determined by the pathology report. Most likely my cocktail will be the same with the addition of adrimycin which means I'll loose hair this time. Oncologist appt Monday to decide on treatment and when. Are you bored yet? Never a boring life for me :)

Doctor stuff

I accidentally deleted yesterday's post. My MRI was clear. The PET Scan showed cancer in lymph nodes everywhere but my spleen. It is time for chemotherapy. So I have a port implanted tomorrow. The Ophtholmologist today said I have an artery blocked and I may gain vision around the eye but not in the center. It should have been treated in the first 5 days, duh! He suggests a powerful steroid given IV and a lumbar tap to see what's floating around in the spinal fluid. Thinks the clot in the eye is a clump of cancer cells. Worried about it doing the same to the right eye but chemo should preclude that. Later today is an appointment to schedule a biopsy.

The eyes have it.

Ophthalmologist at 8 this morning. The verdict is optic nerve damage either from a blood clot or a metastacise. Slim to no odds of regaining my sight. I'm not sure how I feel because I haven't dwelt on it. It is what it is. Being referred to a specialist. I doubt he will say much different. My right eye hurts so time for a nap. The my MRI and PET Scan at 4:15. Bah!

Hangin'

Just hanging with the dogs and CNBC is getting old! I didn't seem to have a problem doing it before my trip but now that I'm home it seems different. Just hanging in the Philippines was different. I hung outside in one of 3 places and there was always something to watch or someone to visit with. If nothing else, there was bird watching. Nearby was a thicket of bamboo which was at least 75 feet high and full of birds. It had the usual suspects of Eurasian Tree Sparrows and Pied Fantails but occasionally a visitor came by like the Philippine Tailorbird or Brown Shrike. Watching that tree could consume hours. One night we were visited by a Peregrine that also liked the birds in that tree. There were many birds that visited that were deep in the thicket and I couldn't get a good look at them. It was a pleasure to wake as sun came up and listen to the symphony of from that tree, although I never got up that early (5 am).
So maybe it's the snow and winter that are boring me. Very little new activity outside. An occasional moose or Boreal Chickadee come by but otherwise it's pretty dull around here. It's no wonder I miss the Philippines!

Philippines 2011/2012

Here I am on my last day in the Philippines. I have been having a perfect time with friends. But my reality has decided to rear its sphinx head. My reality is my cancer that has tried to spoil this time by blinding me in the left eye. Cancer, I spit on you, anathema! I have put reality in a deep recess; at least for the rest of today. Then doctors, MRI, PET scan and treatment of some kind. What I would give to stay in my dream world! In am the face of millions in the same reality.
Tomorrow will be a sad and long day. Only one of many to come.

Philippines 2011-2012

I haven't really felt like posting here. It's been kind of crazy. After another visit with the doctor I decided to get home as soon as possible for treatment. The earliest I can leave is Jan 23. Planes are full due to Chinese New Year. I have a series of appointments when I get back and hopefully treatment begins soon enough to recover the sight in my eye.
Today we celebrated the Feast of Santa Nino with friends in a nearby barangay. Great food and native dancers. The hospitality here is beyond compare!
It is hot and humid today and no wind. I pray for wind on days like today!
Please keep me in your prayers! And by the way, cancer sucks!

Philippines 2011/2012

Three nights ago we were looking at the moon and Jupiter with binoculars and drinking a few beers. Suddenly my left eye went blurry and I saw people in psychedelic colors and then nothing. Blind! I went to the eye doctor on Tuesday and got an appointment for yesterday. The doctor checked and said I had an inflammation that was effecting the optic nerve and cornia. He suspects it is caused by metastatic cancer but he needs an angiogram to be sure. I have to go to Manila for that. He also said he didn't think the vision would come back and I would probably loose my eye. He seemed pretty sure even without the angiogram. What a shock! I hope he is wrong and have decided to go get the angiogram. Please pray for me! Thanks!

Days 7-11 Philippines 2011/2012

We spent Monday having the car looked at at an Isuzu dealer. They agreed that the transmission is bad but didn't have one to put in it. Tuesday we went to SM to the movie. It was horrid so I left and cruised the Mall. Wednesday we took the car to San Fernando and they replaced the trany but it was defective also so yesterday they replaced it. They are picking it up today. I hope it works this time. Thursday Rizals Revenge finally caught up with me. I was horribly sick with a potty run every half hour. I thought I was going to die! I slept all day and couldn't eat or drink which made it worse. I started getting better late in the evening and slept all night. Up early today and had a shower and finally ate. I am drinking Gatorade and feeling much better. Tonight is a birthday party for Mary's sister Baltazara but not sure if I'm up to it. Gut is still slightly cranky. It's been a fun trip from the new foods point of view. I've eaten pamello, Logan fruit, sisig, none of which I've had before. With the car fixed we will begin to travel.

Days 2-6 Philippines 2011/2012

So our flight actually took off at 1pm and we arrived in Incheon in 11 hours.Then a short wait and off to Manila on Philippine Airlines. First time on a 747/400. On arrival it was wait for immigration and then for baggage. The immigration guy gave us 1year visas with a slight inducement. We were greated by the whole family and began the drive home. Of course we had to stop and eat and got home at around 2:30 am and stayed up until 3:45. 4 hours of sleep later, a new day. Highlights: Monday went to Baliuag and money exchange, women got facials and we cruised the mall (SM). Dinner and some drinking after. Tuesday I got my first pedi and mani cure. Went for groceries at SM and looked for a sim card. Dinner at Paul's. Wednesday not much going on. Thursday back to SM shopping and I got a sim card finally. Friday we took the car to a mechanic inn San Fernado. Needs a transmission for a total of around $1,000. Saturday they butchered a pig and made all kinds of dishes for New Years Day. Also prepared a small pig for lechon. In the evening we did the lechon and it sure was good! We drank some beer and had some more with the neighbor. At 11:45 all heck broke loose. I have NEVER seen so many fireworks nor hear so many guns firing. It was nonstop for 35 minuted and then more sporadic. Awesome! Happy New Year we ate a lot and many friends, relatives and neighbors came by to eat and visit. Everyone teased me about being Santa! My asthma was kicking my butt so I was in bead REAL early. I love it here!