Tuesday, September 29, 2009

We now return you to your regularly scheduled program.

So here we are a few weeks after the last post, or maybe just a few scant days. I seem to have lost a week in there somewhere just laying in bed not wanting to get up, not really wanting to eat, not really caring much to even live… That’s the cold hard truth. Why? A week ago today I had another appointment with my Hematologist but I actually saw another one in Livermore. Seems that the first is moving her practice back to Palo Alto and I am being passed onto another Dr. No real biggie, just a new face. What WAS new was what the new doctor had to say. Seems the “new medication” that I was going to go on is something that your body makes in situations where it needs more blood and my body is already making WAY more than normal anyway. Long story short, the new medication would have no real effect. So… what now? Well there is basically one more medication, Thalidomide, and it has it’s own set of problems that I am not even going to go into. Apart from that there is really nothing else except for a BMT (Bone Marrow Transplant) and I had already said that I was putting that on the back burner so to speak for my last ditch effort. Seems as though that pot is about to boil over. The risks involved with that are numerous and VERY serious. The percentages of it even working aren’t even all that great… thus the reason to keep it on hold for as long as possible.

Needless to say, both Sarah and I were VERY upset by the time the appointment was over. I could hardly sleep for several days while I “processed” this new development and neither could Sarah. I think this past week was even worse for me than the initial diagnosis and subsequent discussion of the BMT. I honestly thought at one point that everyone around me would be better off if I were just plain gone right now, then they wouldn’t have to see me deteriorate, or watch me suffer. I know that is hard to hear (or read) but that IS the truth. You see, depression is very much like being drunk. When you are too drunk to drive, you are too drunk to KNOW you are too drunk to drive. Similarly, when you are in deep depression, you are too depressed to KNOW you are depressed. Please don’t start calling all sorts of people, I never ONCE thought about ending my life. I could never do that, WOULD never do that. I know enough to get help and Sarah watches me like a hawk. I simply want you to know the absolute gravity of the situation. Heavy huh?

I think that the thing that upset me the most was that I gave MYSELF a false sense of security. I let the doctors tell me what would happen, what medications I would take… etc. etc. Now I am in charge of my life and I intend to stay there. I guess I always knew in the very back of my mind that it would eventually lead to this (the BMT) but I just didn’t WANT to go there. Sometimes you don’t get a choice where you have to go, you just go there because it is what must be done. Sarah and I are talking about it VERY seriously now and making preliminary plans for when it will happen. I will do it on MY terms though, when I am ready. There are a lot of very serious decisions to be made and we need to take some time to think them through very carefully. I know too that a lot of you are asking Sarah how you can be tested to see if you are a match to be my donor… you cannot know how deeply moved I am by that. I simply have no words to express my feelings on this. Thank you is all I have and it seems like it cannot even come CLOSE to being enough. I am not sure what is required but I will ask the doctor next week and let you all know. If you have any questions please, PLEASE feel free to ask. I will be absolutely honest with you. I think that the test is a simple blood draw but the actual “harvesting” of the marrow is much like the bone marrow biopsies that I had, and they hurt like HELL! Again, I think… It has been some time since I talked to any doctors about this and I pretty much dismissed it at the time. I WILL ask and let you all know though.

OK, onto happier things now… Sarah, Connor, Kenyon and I joined our friend Jennifer, her three sons, and her brother in an adventure that saw us driving to Reno, NV a week ago Saturday to watch the Reno Air Races. VERY COOL! Those planes were hauling BOOTAY!!! We also got some pit passes from a friend of hers (it’s good to have friends) and got to see some of the planes up close and personal like. There were also some military planes on display as well as putting on demonstrations in the air. It was a long drive but well worth it and I expect to see them again next year! We also went to the Capitol City Air show, just Sarah, Connor and I, a week before that. I finally got to see an F-22 Raptor in the air and it left me utterly speechless. The things that plane can do absolutely push the very limits of what seems possible according to the laws of physics! Connor got to meet the pilot and ground crew, get a t-shirt signed by all of them and one of them gave him a collectible coin! Very cool… I think I may have a fighter jock in the making!

I also began sorting through the mess that is my truck… It has been sitting outside ever since it’s arrival and I got it started and turned around and drove it into the garage. It was almost a gallon low in the transmission, the battery will not stay charged and the brakes need some serious attention. There is a laundry list of things on it that require my attention but it is my top priority. I want, no, I NEED to get that thing back on the road, to feel a sense of accomplishment and reap the rewards. I have once again been feeling like I have no purpose, no sense of who I am or why I am here. Like I have no job, so… I am going to treat this like it is my job.

There are some photos that I need to post onto the Flickr page too but that may have to wait for a few days. One of Sarah’s Uncles passed away and the funeral is Wednesday. At first I didn’t want to go but I know that it’s not me in the box and I don’t intend for it to be for a very long time so wish me luck! Once we are done sealing with that I will try to get the photos uploaded for you all to see. I also have several emails and Facebook messages to respond to (I haven’t forgotten you or been ignoring you, just dealing with my own demons) and I WILL get to those just as soon as I can. Please keep them coming, I miss some of you terribly and it helps to hear from you or read your words of kind encouragement.

Until next month (or whenever I feel I have something to share), I leave you with my love and thanks, for all your support.


Monday, September 21, 2009

Round two to the Gorilla

Well as many of you know (at least those that follow my facebook updates) today was not such a good day… I had an appointment with the Hematologist at 10:30 and by the time I got back to the van I was a slobbering bawling wreck. Some of you are aware that the new Dr. had me weaning off of the Prednisone and Danazol. Clearly they were not working and the long-term effects were not so desirable. Plus, I was tired (as were Sarah and the kids) of dealing with my dramatic mood swings and I was just plain getting super angry at the stupidest little things. Enough was enough. She had spoken to me about trying another drug and I suppose that I pinned my hopes on it as my miracle cure. Well, it ain’t happenin’. What this drug was going to do was replace a chemical that my body (and yours) naturally makes when it needs more red blood cells. After the test to determine what the level of this chemical was in MY body, it was discovered that I am ALREADY producing more than normal. Ergo, the medicine would not really do me any good.

So where does that leave me? With only one more drug to try, Thalidomide. This is a drug that was developed back in the 50’s (I think) as a sedative for pregnant women. Worked great except for one small side effect, all the women gave birth to babies that had severe birth defects… It was mothballed as you might well imagine, but it stayed on the shelf for possible other uses. They have made changes to its chemical make-up over the years and in fact, the clinical trial I was in at the Mayo Clinic was for the latest generation of this drug. While in the trial I was only getting transfusions about once a month as opposed to bi-weekly transfusions. It has been some time since I discussed this drug with any doctors but as I recall the potential side effects for me could be irreparable nerve damage, birth defects (yeah, it’s so nasty that if Sarah were to get preggers, the baby would have severe birth defects), so even though she is “fixed” I would have to take precautions to help insure that didn’t happen. I can tell you that NO guy like to think about these things, especially in the heat of the moment… As I am not yet even done weaning off the previous meds, none of this has really been discussed in detail with the new Dr.’s but I’ll address that when the time comes.

There is one other option which all of the new doctors have discussed and even gotten the ball rolling on already… the Transplant. In the new scenario a caregiver and I would go to Seattle and spend a week getting prepped by getting Chemo (for me, not the caregiver!) and then get the transplant. Afterwards I would need to stay there for a MINIMUM of 30 days. With all that I would be going through I don’t think that I would want the kids to have to see that… That means finding someone to take care of them for the duration, not to mention being apart from tem for that long… Then there is the very real possibility that the transplant won’t take or even worse, the possibility of Graft Vs. Host disease. In this case, the new bone marrow’s white blood cells would reject my body (the host) and attempt to eradicate me much like the common cold when you get sick. The odds of success are not all that good and frankly, I don’t want to go into details right now. I hope you understand…

To all of you who posted such kind and encouraging words on my facebook page today, I cannot begin to tell you how much that helped me get through the day… I could have easily given up and I will not EVEN begin to tell you how the thought process works regarding THAT. For those that called, I apologize if I wasn’t all that talkative, I was always taught that if you can’t say something nice, say nothing. Well, there was nothing nice to say. And to Frank, thanks for stopping by. It’s very comforting to know that help is only a phone call away. I understand all that you are going through already and I hate to add to that burden but as you all can see, there seems little that I can do otherwise.

Somehow thank you seems so feebly inadequate to all of you, but it is all I have at the moment. Please respect that this will take some time to process and I will likely not feel like “talking” about it. Please feel free to post comments on my facebook or on the Blog, as I will be trying to keep up on those. If you don’t hear from me, don’t worry… that doesn’t help you OR me. You can call Sarah if you need to get in touch with us but my phone will probably go straight to voice mail. I simply have enough to deal with right now…

Know also that I love you each and every one and I am simply AMAZED by the love and support that I have gotten already, even from people that have never met me or don’t even know who I am. You are ALL truly amazing people and I considered myself blessed to have you in my corner. That Gorilla packs a mean wallop! By the way, I could use a couple cases of bananas; I think he’s recruiting chimps…

DING DING DING!!! Round three!

Saturday, September 12, 2009

I'm a little bit scared, but I am loved.

Someone once told me, during the initial phases of my emotional struggle to cope with my disease, that having a terminal disease was like sitting in a room with an 800-pound gorilla. Permit me to tell you how that whole concept works.

Throughout all of this, there are good days and bad. I am extremely grateful that the bad days are all just in my head (bare with me) and that there is no pain, and that on the good days I can mow the lawn, change my oil, build a new dinning room table and even muster up the gumption to walk the dogs. I am also thankful that the good days far outnumber the bad. On those “bad days”, the gorilla gets the upper hand. These are the days when I begin to wonder what will happen when I am gone. How will Sarah and the kids deal with my loss from one day to the next? Who will fix the leaky faucet, the broken switch on the fan, or replace the faulty outlet in the wall? Then it all becomes too much and I go to the bedroom and lie down and feel the press of all my worries bearing down on my chest and suddenly the world becomes very small…

Now on most days the gorilla is content to sit in the corner on his bed of palm fronds peeling bananas and watching Gilligans Island reruns. But, on the bad days, as I lie on the bed I can hear him slowly standing up. He senses my fear and knows that I am weak. He takes a tentative step forward on squatty legs, sniffs the air and I swear he smiles… just a bit. He stands up to his full height, stretches his arms out and cups his massive hands. His arms bend at the elbows and he begins to beat furiously on his chest, and I grow more scared. I begin to think that maybe it would be best to just lay there and let the gorilla win. All of my worries would end and no one would have to worry for me anymore either. So many people say after the loss of a loved one: “They’re in a better place.” So why then do we adhere to the mantra that we must fight to live? If I am going to a better place, why not just give in to the disease and just go?

At about this point one of two things happens. Either I remember the words of a wise friend who told me “Don’t do this for you, do it for me, for Sarah and the kids.” Or Sarah senses that I am having a bad day and she comes to my side and gives me the strength I need. The strength to fight the good fight! We talk it out, express our fears, our worries and our desires for the future. We give hope a voice in the darkest of hours and it is like a switch is turned on somewhere in the recesses of my soul. And I begin to rise… The thunderous beating starts to slow then diminish all together. There is this very quizzical yet oh so simian look on the gorillas face, as if he was thinking “OH shit!” and he retreats just a half step. I get off the bed and stand, a little uncertain at first (after all, he IS an 800 pound gorilla!) but then I feel the love and prayers of all the people that care so much about me and my family and my strength and confidence starts to grow by leaps and bounds! I stretch and rise to my full height and I tower over the ape that roars his disapproval of my newfound vigor, but to no avail. I will not be stopped!

I reach up into the tree and break a branch off and point it at him in defiance. One eye sort of squints as if I was aiming my power at him through the makeshift club. I then stretch my arms wide, squat my legs just a bit, throw back my head and fill my lungs until they feel as if they are going to burst they are so full of air and I scream!!! The sort of primal scream that says “I am here to stay for a very, very long time… get comfortable in your corner gorilla because that is where you’re going to stay!”

That is how it goes during the bad days… so remember, when you read that inspirational quote, when you see that picture of something so funny that milk comes out of your nose, or when you get a link to a video of some idiot doing something incredibly dumb with his brand new Ferrari and you laugh so hard that tears roll down your cheeks, send it on to a friend. You never know, they might be dealing with an 800 pound gorilla themselves… And when you think of that relative or friend that you have not heard from in a very long time and you start to worry, they are only a phone call away and your voice and your words of encouragement may just be what they need to hear to help them put their ape in HIS place… so call, email or write.

Now if you are the one dealing with the 800-pound gorilla, make sure to keep a generous supply of bananas on hand and always leave the TV in your room tuned to Gilligans Island reruns. If you can’t keep him in his place, at least keep him distracted until help arrives and remember, it’s ok to ask for help. Besides, you can’t very bloody well carry his dead carcass out of the house by yourself now can you?

May the road rise up to meet you,
May the wind be ever at your back.
May the sun shine warm upon your face
And the rain fall softly on your fields.
And until we meet again,
May God hold you in the hollow of his hand.

All my love and extra bananas,

Saturday, September 5, 2009

New Beginnings.

Well, here I am, one month into a new life and things are simply flying! I have met my new team of doctors and now have everything set up here. The new hematologist Dr. Martin is taking me off of the Danazol and Prednisone as we both agree that they are not working. I am also increasing the Exjade (this takes out the iron in my blood from the transfusions) and I will soon be starting a new medication if some tests come back positive. It will get my body making the blood so I am not so dependent on the transfusions by using some of the extra iron in my blood thereby killing two birds with one stone. I am hopeful that this will all go as planned but regardless, I am happy to be getting off of the Prednisone and Danazol as they have had me on an emotional roller coaster as many of you have doubtless noticed. I did have a really rough weekend a couple of weeks ago, all of it emotional stuff and I think it can be attributed to the meds, yet another reason to be done with them. Regardless of how this all pans out, I am excited to have new doctors and that THEY are excited to be working with me. I am scheduled for a bone density test in a couple of weeks and Dr. Martin wants to do another bone marrow biopsy (I can’t begin to tell you how much I am NOT looking forward to that!) so things are moving right along. Wish me luck!

We have very nearly got everything unpacked and found almost all of the things that were lost in the mix during the packing and moving. I have plans to build a new dining room table and matching benches and I am VERY excited to be back in the shop again, even if it isn’t my shop. I have started to work on the Simplicity and hope to have it working again soon as well. I am sure the neighbors will think me the laziest person on the block for using s riding mower to mow our little patch of lawn, I could probably do it faster with the push mower but it’s the process of bringing something back from the scrap yard that excites me. And I think it’s kinda cute too… I have not as yet done any more work on the truck as I have been busy getting things squared away in the garage. It is nice being able to park in there but I know it will be short lived, there is simply not enough room for both vehicles in there with all of our other stuff. Perhaps I can put more of the “stuff” up in the rafters above the garage but for now, the van will be relegated to the outdoors. Nothing new for it, just a lot warmer and no snow to shovel off of it in the winter. I hope to have it back on the road by my birthday next year, budget permitting…

The kids have started the school year with the new charter school. We get all the materials from them and we can enroll them in martial arts classes, music lessons, and dance classes among other things and the school will pay for it. So far they are adjusting well and I do not foresee any problems in the future. Molly is making friends with some of the kids in the neighborhood as well as Sarah’s cousin’s kids. I have started taking the dogs for walks in the morning (it gets way too hot way too early!) and I feel great! I am also starting a few other exercises as well trying to shed a few of these extra pounds. Dr. Martin says that when I get off of the Prednisone that will help too. It has also been great for the dogs, as they no longer have the yard space they once did and they have been getting quite restless. They also have little desire to go outside during the day because of the heat, and I can’t say as I blame them there either. I am going to try to get Sarah’s Dad’s dog Levi to work with them too. He is still very much a puppy and has tons of energy. My goal is to get them all to walk together and then I can take our dogs out to his house in the country and walk them all in the morning. The view is much more agreeable to me out there. Levi is a great dog too and I am glad that our dogs get along with him; he just needs to be socialized with other dogs. He has to learn his “place” in the pack so to speak.

Well, that’s about all I have for this month. It has only been a couple of weeks since I posted the last month’s update. I took a few photos of the kids out at Papa’s pool and I’ll try to get them uploaded to the Flickr page. I’ll send you the link when I get that done. Until next month, take care of yourselves and those around you.

All my love,