I should so be sleeping right now....

Of all nights... tonight I need to be sleeping more then any night in recent memory. With a 4:15am alarm set.. it is now almost midnight and after a glass of vino and a couple pain killers I still am unable to quite the thoughts of the spinning carousel monster of it, what and but's in my head.

Tomorrow I am catching an early morning flight with a few friends, flying over to the Big Island (the island of Hawaii) and pushing the physical limits of my strength by hiking to a remote valley. We will be hiking 9 miles tomorrow and if that isn't bad enough it now looks like I will be doing it on no sleep, not to mention the wonderful liquid sunshine (rain) we are supposed to be hiking in. Waimanu Valley an amazing place to camp just make sure you bring your hiking shoes and are not afraid to cross 13 streams along the way.

Why tonight, of all nights you ask? or is it more like... Get to the point already dumb ass? gosh this dude can sure drag out this Cancer thing.... I got a call from City of Hope today (around 3pm) and they are ready to bring me over to have my transplant. This is a good thing mind you, but it is a scary/worrisome thing. I knew it was coming and have been mentally preparing for a transplant late this year early next year, however after talking to the transplant coordinator it really sinks in. My initial reaction was o.k. I am ready. Let's do this and get it done. That did not last long. 15 minutes or so and then I could not hold a thought what so ever. I could focus on what was left to do before leaving tomorrow.. Which happens to be very important. I have to be in court for a civil lawsuit on Monday (we get back 10pm Sunday night) that I have against a former employee for quite a bit of money, and I was going to put everything in order tonight.... I will now have to do it on upon my return. What timing I was given the court date just 2 days ago. That is another story for another e-mail... Then I went out to collect the last few items I needed and the sadness really hit me. Before I left the house I sent an e-mailed to few people who had offered to stay with me in the past (if that was something I needed) and to a few people that I thought may have the ability and desire to do so as well. Well while I was driving I started to think of each of the people I had sent the e-mail to, and the people that I did not send the e-mail to.. AND how the hardest things for me to deal with seem so silly... if I could just step back and look at it from your perspective.

It is so tough...... Not being able to take care of yourself

It is so tough...... To not only rely on other, but ask for help... and it is not that I mind help. I actually like it, however some inner, animalistic, barbaric notion can not just except it... What is up with that.. Really!!!

It is so tough..... Not knowing what is next... even worse is knowing what is next and how bad it is going to suck. Like it or not, except it or not.... It is going to suck... like taking a poop in the space shuttle

So there you have it. Of all the nights. Tomorrow is going to be something. Here is what I know as of now.

I am to have surgery the 2nd week of December for an umbilical hernia. After a month I am supposed to go to CA and start treatment. A week of meeting with the Doc's Mon-Thurs with a Friday admission. I am asking for a slight delay in my arrival date. They want me there like the 3rd but I will push them back to the 24th give or take. I am going to plan something fun or as least try to.... Maybe a week to 10 days in the grand canyon something of that nature.... We'll see. Anyway here is the cliff note version of there plans for me once I arrive. (My coordinator is going to e-mail me a detail outline of the treatment regime later, so I will have more details and a better idea of drugs and so forth)

Sunday 24th arrive to CA
Monday 25th blood work and meet with my Onc.
Tues-Thurs meet with Radiation Onc. and someone else
Friday get admitted to the hospital. Either have a central line inserted or go to surgery to have another Hickman catheter place.
Friday-Sunday Radiation therapy, followed by chemo therapy. Now I am not sure if this specific chemo will be administered after my days of Radiation or in conjunction with the radiation..hum, does it really matter?

I will then receive stem cells from a donor. I will not be receiving bone marrow like previously thought. It seems marrow transplants are done less and less frequently because of the risk involved.

So all this takes place and it is estimated that I will be in the hospital for 30 days. Close to the amount of time with my last transplant. I will then have to stay near the hospital for another 70 days until I am cleared to return home. So I will be in CA from late January till early May in my estimation.

So that is the skinny on that... now the bad news... Yea if you can believe that.. That is the good news... My arch enemy Mrs. Golgen must have been tight with God, maybe he had a childhood crush on her and carried her books to school for her... nah must have been the other guy... cause I am paying for big time for 10 grade biology...

The bad news. Doxil one of the chemotherapy drugs I am on can cause heart failure. I have been on the medication for 8 months/cycles. Thankfully it has helped with my IgD levels, UnThankfully it has wrecked my heart. I hearts Ejection Fraction or EF has droped from 64% to 44%. EF means: (when heart contracts it ejects out blood but a certain amount of blood is still left in heart. so ejection fraction is the fraction of total blood in the heart which is sent out by heart after contraction.normally it is around 65%) It is like I have had a heart attack or better yet like I have been smoking ICE for years and my heart muscle is swollen flabby and not beating very well. This is why I have been so fatigued for the past few months. I found this out a couple weeks ago, but I had trouble getting past it. I will not see a cardiologist until I get the results of the Echocardiogram (that I am scheduled to have next Tuesday) to confirm the results of the MUGA scan. You talk about feeling low. I sat at the computer to type up an up date because my IgD levels did go down again, but I just could not. I felt like all the wind was taken out of my sails.... I had a feeling like I practice hard for something, practiced for a long time and then in the last second I lost... an indescribable empty feeling that last about 3 days

So that is what I have been up to... Oh did I mention I had a Clonic... No well why would hide that embarrassing tid bit from everyone. My "lower" stomach has been so bad lately I went almost a week without eating solid foods, then added a dinner to the menu for a few more days, and now camp food. However after day 6 of my almost all liquid diet... I had my self some good old colon cleansing. Can't say that I recommend it but I am hopefully that it will help with my digestion, pain, cramping, and not so pleasant trips to the boy's room....

Well it is now about 1am and now that I got some of this out I will attempt to catch a few hours of sleep... Let me rephrase that. I am now going to close my eyes and fall asleep for a few hours so I can hit the trail tomorrow.

You can cross 2 more off the Bucket List...

First I must thank the Shulers for putting together another fundraiser for me. My mother for helping, and everyone who contributed time, made donations, raised funds and came out on that cold _ _ _ rainy day in April. Thank you very, very much. Not if…… but as all continues to go well, I may have another transplant by the end of the year.

As some of you may know I cashed in some of my airline miles and booked a trip to the Philippines. Yes I know. While it may not be the on par with some of the cleanest places I could have visited there is a very good reason.






Whale Sharks. That’s right it sounds bad but "Trust me" (he said with a smile and batting his eyes lashes) it is not as bad as it sounds. Although they are the largest fish in the sea, they are plankton not man eaters. I was able to view one on my first day out and will go out tomorrow as well. I am much more likely to be injured by another tourist then one of these magnificent fish. There are a few other places in the world where you can swim with these giants however the South China Sea off of the coast of Donsol holds the best chance of having multiple encounters in a single day.

The trip was a spur of the moment event. Thanks to Edmund a.k.a. Shark Bait (Hawaiian Brew Master and Legend) who informed me he was headed to the Philippines after his 6 week work voyage in the Pacific. Edmund works for NOAA and his job is to document and monitor coral reef systems in the Pacific. He mentioned you could swim with the Whale Sharks, which I thought could only be done in Western Australia. After a little research on booking a flight with my miles (55,000 r/t) and convincing Shark Bait I would be a fun guy to travel, bunk, eat and tour around with I checked my miles and booked my trip.

Besides the Shark diving I also had the chance to Scuba dive again. It has been way to long. Even before getting sick I kept telling myself I need to go diving again. It just never happened. Well Bait picked the right spot for us. We stayed on and dove from Apo Island, and experience some of the best diving (over 4 days) the Philippines has to offer. It is an amazing world under the water around Apo.

Edmound and I on the way to Apo Island.... Edmound sampling some street meat or chicken feet

I have met some colorful, interesting and unique people so far on my journey. My time here is a little more the half over, and today I have decided to take it easy. I had a small infection from an ingrown toenail that I had to lance and treat yesterday so rest and staying out of the water for the day will do me good.

Picture of infected toe and puss after lancing will not be pictured.

My health is good. As most of you know my IgD levels have gone down significantly over the past month. I will have my next blood draw later this month. I wish everyone well.

Aloha

p.s. Believe it or not I did get my Oncologist permission to: A. go diving & B. travel to the Philippines.

It's been a few weeks since the 2nd dose of my 3rd Chemo and no major side effects

This is a quick update to let everyone know that I have been doing well since my last round of Chemo. I did not have a re-occurrence or flare up of the Shingles. Nor did I get any of the painful blisters with this round of treatment. The ones I did get almost 2 months ago have not healed yet. The only problem has been the increased intensity of the pain I have been dealing with in my feet and legs. The pain is different at times but feels like I have been standing on marbles for a long time or that my entire feet are bruised and every time I step it is like someone pressing on a deep bruise you have on an arm or leg, and lastly my favorite is when it feels like the bones in my feet are going to shatter from the inside out. The pain is from my neuropathy, and my current chemo treatments has kicked it up a notch. However a little over a week ago I saw a pain specialist who increased the medication I have been taking for neuopathy. He also put me on new green pill and a pink one 2. The pink one is twice a day, however it replaced this little white one I was taking for pain and I was taking that one up to 12 times a day. I am now only taking 1 or 2 of those little white Oxycontin daily.... I also got's me a Vit. D supplement to help with bone pain, even though the neuropathy is bad enough that it blocks out the pain in my sternum, ribs and joints.

So with the new colored pills and extra orange ones I am now taking my pain has greatly improved. I have been able to walk (twice) for exercise, and have finally been able to workout at the gym. Light lifting and hitting the bike. I have ballooned back up to 195lbs..... Impressive I know, just more of me, much more of me to love. I will have new blood work done toward the end of the month. I will keep everyone posted on how much my levels have goon down. Until then.

Aloha


Recent Visitors to Hawaii

Ryan "Nesspa" a good friend of my from York and his dad (not pictured), were the first to hit the Islands on vacation, and help ruin my diet. He B.S.'d his way into a free trip via work. Definitely a benefit of having a large brain. Not long after his visit Eloy and Michael friends of my living in DC, landed in Kauai (picture right), and then Oahu. They were no more help to my diet then Ryan, however both treated me to a few nice meals. Thanks again fella's.

Eloy, Michael & myself at Queens beach for sunset on there last day in Hawaii.

Another close friend of mine from York PA (Whitney aka The Siberian Snow Leopard), and her good friend Rebecca visited Hawaii in March. Below are a few pic's from there visit.

Jon, Whit & I @ Murphy's Irish Pub........Cheers from "The Shack"

The Snow Leopard & her Apprentice..........Dinner with Rebecca & Adam

Will Blogging help ME get out of my FUNK

Although I have been funky on occasion, quite possibly never more so then a 10 day trip Serena and I took through the Kimberly’s National Park in Western Oz. Many moons ago during that ten day adventure we were presented with the opportunity to shower twice. Although the water was frigid beyond the temperature required for normal "shrinkage" everyone traveling on this adventure myself included took advantage of the opportunities. Although showers and the opportunity to properly take soap to ones body were limited (hence the reference to Funky… this parenthesis included solely for the benefit of Matt and Intrieris intelligence level) we did have a chance to submerge ourselves into various bodies of water along the way. We were around water Streams, Ponds, Lakes, Billabongs and such on a daily basis. The details of that 2003 adventure are a little blurry however still very memorable. Now I am as far off the subject as you are from Oz. Not including Goodgames, Dave & Agnes, Pete, Leigh, Sarah, and George.

I have been meaning to blog. I have come close. I stopped blogging just before my transplant. It came at a time when it appeared that I stopped due to being in the hospital and being sick, however the decision to no longer post information on the net was made before I got sick in the hospital. I stopped for personal reasons and then with everything that went on with and since my hospitalization, especially in my personal life I did not know where to begin or if I would. Well as the title of this post suggest I am in a Funk. For sometime after my return to Hawaii and Divorce I proceeded to "go through the motions". However I struggled with the meaning of my time, my life, what it meant to me, why it did not mean as much to me now as it had years before. The sky did not appear as blue and my surroundings as colorful as they had in my past..... When I was happy. Life truly lacked it's color, the little pleasantries.... the smell of the air after a heavy rain, soft grass under my feet while on a walk, jog, or running after a Frisbee in the park.

Late last year / earlier this year I thought I reach a plateau. The first step in my journey toward normalcy or at least what I perceive as normalcy (for me mentally and emotionally). Getting back to the enjoyment of simple things. Putting some recent life events into my past and moving on. I was doing well, enjoying my days more... much more then I had in some time. I started various exercise classes, going to the gym to ride the stationary bike a couple times a week and swimming in the ocean when I could. I started eating better and quickly lost a lot of the excess weight I have been carrying. No need to preach, I know and have heard it from many people "It is good to have a little extra weight." "You don't want to be too thin, in case.", and "you look good right now, you do not need to loose anymore weight." All nice things to say, but no one knows ones body better then oneself. I went over 200lbs at one point. And during my brief period on that plateau mentioned above I got down to 182lbs. Still 10-15lbs over my normal body weight but acceptable. I am now back in that Funk. Thanks to the flu, personal stressor, and the lovely side effects from my newest chemotherapy treatment (shingles and a new record level of neuropathy pain). All excuses.....

This is a mental thing.... feeling bad for myself on some level, or just feeling bad. I am not sure which because I don't feel that bad (mentally), however I am not motivated to move forward. I am going through the motions again. I hope that getting my thoughts out or into this blog will help push me forward. Recently when I was going through the motions I did things (Skydive, snorkel, hike, travel) that would normally bring a feeling of living to me. They did not, but when I was feeling better on the plateau the little things mattered again.

Earlier today I received my second cycle of the third type of treatment prescribed since my transplant, and second since my remission ended. I think it was this event or course of medications that pushed me to start typing. That and the high dose of steroids (Decadron, what Serena would justifiably call the crazy med) that I have to take for the next four days which will keep me up make me cranky and cause an insatiable hunger for about at least a week. The Chemo treatment (course or medication) is what worries me. It caused my shingles about 5 weeks ago, and a lot of pain. Pain that reached a level of intolerable on a few occasions. Once the pain was unbearable it took hours and a lot of medication before it was tolerable again. As I continue with the current medication I know my neuropathy will get worse, the pain will get worse and typing this blog my help me by accepting this before it happens. Reminding me that this is what it is & it is just around the corner. It may just help me ready myself and help push me to go about my day. I know it is ok if it slows me down or if I have to change my plans, cancel an appointment/lunch/or meeting if I am not feeling well. I know not to push it "to far or to hard" but it is time to start living again, and I need to get bank on that bike and ride. I will just have to get a side seat take my life partner MM along.

Who wants to go for a ride?

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