When life deals you lemons

I've thought about this phrase a lot lately, in more abstract terms than just lemons, but the old proverb is probable very representative in how you feel when you get dealt a bad hand. Although in my case, if I'm dealt lemons, I'd probably cut them up into nice wedge shapes, and put them on my Hefeweizen.  (For those of you on the East coast, Hefeweizen is an unfiltered German wheat beer....It goes nice with a little lemon wedge to give it a little zing). And it's symbolic for everyone that has to deal with cancer. Everyone's story is different, although we share the same underlying fears and hopes.

 

So I've been spending my time doing exactly what I want to be doing, and the snow has given us some precious time with Christian since Daycare has either been closed, or unreachable. I am still amazed to watch him discover the world, and all its wonders. This is a picture of Christian and I sledding down our street this weekend! After seeing the 3 year old neighbor girl on skis today, he told me he'd like to try skiing next year (in not so many words)..He was cheering as she was going by in perfect form!

 

Now for something entirely different ! Today was my weekly meeting with Dr. P. Even wtih all the snow we've had, they were keeping their normal schedule. There was some positive news, my WBC count had dropped to 62k. Both Cynthia and I were way off, although she won the bet since she was closest. My guess was 119k and her's was 111k. Also, the rest of my numbers were heading in the right direction, including my blasts which were down to 1,200 from a high of 12,000 just 3 weeks ago (Goal is 0). Dr. P seemed really pleased with the results, so much that he said we could cancel next week's appointment ! So our next appointment will be on 1/7/09 to again to draw blood and review the numbers.
I still haven't experienced any real side effects of the Gleevec, although I caught myself missing a Syracuse game on TV. I hope that is a temporary condition. He also did some feeling around, and estimated that my spleen is half the size it was, and said that I could return to normal activities, within limits (I read that as soccer and skiing are back on the schedule ) . Here is my stat tracker:

On the Tyler front, he finally got some sleep over the weekend, so I'm hoping he's regaining some of that lost sleep ! I appreciate people continue to send positive thoughts Tyler's way, they are getting so close to January.

Makes you wonder

Tyler had an interesting theory about what we have in common, and how 3 guys on the same soccer team (including one of our teammates that has been in remission for 5 years), all come down with blood cancer. I'm struggling with the dilemma, is it just that we're more aware of it since it's become a very personal story for us, or is there something more behind it. The last thing any of us would want is for any of our families, friends, or even friends of friends to ever have to go through this.

 

While we were pondering the link, then this interesting story was reported in the local news. It's got the similarities we all have in common, soccer and the surface we play on. Now I don't want anyone to jump to any conclusions, change your routine, but it's something we will continue to keep our ear open on.

 

Here is the article : Soccer Player diagnosed with cancer

First real visit with Dr. Petersdorf

We had our first real visit with Dr. Petersdorf office today, after being on Gleevec for a full week. They did my usual blood draw first, and then we discussed the results with the nurse (next appointment is with Dr. P himself). Overall, I'm moving in the right direction. WBC is down to 136k, my blasts dropped from 3k to 2.7k in a week (from 12k two weeks ago). Although I have a long way to go, it's nice to know that numbers are going down. It was hard to know what to expect, everyone reacts at different rates, but glad to see that they are trending down.

 

As a pleasant surprise, we did get to see Tyler today, they had an appointment to draw blood at the same time. It was nice to see Tyler, although since I had to wear a mask, I didn't get to spend too much time with them. I was encouraged to see that his important numbers are coming up, while mine are going down. I really look forward to the day we are sitting at the bar again drinking, and looking back at our experiences.

 

 

 

First visit on Gleevec

First of all I would like to thank everyone for their incredible outpouring of support and offers of help. There are prayers for Tyler and I being said in churches in Star Lake NY, in Ohio, and here in the Seattle area. I have literally drawn strength from your words of encouragement. Both Cynthia and I are eternally grateful to our families and friends.

 

Many have asked what they can do to help, and after talking to Mandy/Tyler/Cynthia, we all agreed that we'd really appreciate if you took time to read over the symptoms. Mandy has done a great write-up of the symptoms to look for that both Tyler and I had. The earlier they can detect this, the better your chances are. You can see her write-up by clicking here. (It will open a new window so you won't have to navigate away from this page).

 

They had drawn bone marrow and blood on the first visit, and this visit was the first follow up on the results and hopefully a treatment plan. We did get a nice call from Dr. Petersdorf's nurse on Friday that the blood results had come back, and the initial review showed that I was in the chronic phase. It did put us at ease a little, and we made an effort to get some regular stuff done like getting our Christmas tree and some shopping done over the weekend.

 

My hip was pretty sore over the weekend from where they did the Bone Marrow Aspiration. Thanks to Tyler I had elected to opt for all the drugs that they would give me, but when all that wore off I could feel it. Cynthia said that the Dr. P bent the 2nd needle in trying to get into my Bone Marrow. She calls it stubbornness on my part, I just think of it as self protection.

 

The visit at SCCA started with blood drawn, which will become the standard procedure. I was encouraged that my weight had gone up a few pounds, since I had been eating small but frequent meals. One of my problems is that my spleen is the size of a football, and putting pressure on the stomach so I haven't had big appetites. Knowing all this has explained a lot, so I have tried to adjust. On the first visit, they had also put me on a chemo drug, just short term to knock down my WBC numbers.

 

The visit with Dr. P went very well in our mind, his demeanor is very nonchalant about the whole thing. Don't get me wrong, I know he takes this very serious, but in describing the treatment and expectations, the first line of defense is pretty standard. I'll go weekly for a month and get measured, then monthly, and then every 3 months after the first 3 months. As Cynthia's mom put it, it's like pregnancy visits just in reverse. We got to discuss milestones and what we could expect. My spleen should return to normal in 3-4 weeks. He couldn't predict what my WBC will do since everyone reacts differently, and it will be almost a month until my normal immune system starts producing normal cells. He described it as if my normal production took a holiday since the leukemia was causing an over abundance of most cells. My next major milestone will come between 6 and 12 months, when they expect to not see any leukemia in the blood. This is again if I follow the happy path of the 90%. My hope is to start feeling better in a month or so, since Cynthia is now 6 months pregnant and she will need me more and more.

 

That night was a very nice surprise waiting for us at the door. Our wonderful neighbors Mike and Joy had prepared a complete meal, along with sides and toppings. She even knows me well enough to prepare it in such a fashion that allowed me to go for meat, cheese and toppings! It was perfect timing since we had already determined that we were too tired to cook.

 

WBC - 150,000 from being on the Chemo drug for a few days.

 

By the way, lost in all this is that my bad cholesterol was great, it was down to 106 ! I'm thinking that means steak once I feel better, something to look forward to !!

 

Update on Wednesday Dec 10th - Took my first dosage of Gleevec this morning and I seem to react to it fine. I'm very tired, but that is probably because I have a cold and just everything going on. Some side effects will be expected, but keeping our fingers crossed.

 

There was a note at the patient coordinators desk at SCCA - "Don't worry about the world ending today, it's already tomorrow in Australia"

Getting in to see an oncologist

While our primary care physician had given us a referral to an oncologist at Cascade Cancer Center, they couldn't see us until the following Monday. After thinking about this for a little while, we decided to take this into our own hands, and contacted Seattle Cancer Care Alliance directly, to see if we couldn't get in any sooner. It just didn't seem like a good idea to sit and wait until Monday. When one of my father's customers (Dr. Slota) back in Upstate NY heard about my case and WBC number, she immediately said that I needed to see someone sooner. That gave us re-assurance that we were doing the right thing, and thanks to Cynthia we had appointments with both SCCA and Puget Sound Cancer Center the very next day (Thursday).

 

We were equally impressed with both oncologists and the staff, but we decided almost immediately to start treatment at SCCA. Dr. Petersdorf did a bone marrow aspiration right away, which would get the process going on determining type and what treatments would be available. Their intuition was that this was Chronic Myelogenous Leukemia (CML), due to the ratios in the blood of the different types of cells and stages. I'm sure I'll get very educated on this in no time.

 

The good news is that CML is the most treatable Leukemia, and now we were just left to determine what phase I was in, Chronic, Accelerated or Blast phase. The first line defense of CML is a drug called Gleevec. For those who have followed Tyler's blog, that was his first medication as well, and he was doing quite well for many months, until he just didn't respond the way they expected. For 90% of the patients in the chronic phase, there are good results on Gleevec alone, and our disappointments have been huge along the way as Tyler hasn't responded to the different drugs they have had him on.

Shock

There is a commonality in everyone's first reaction to find out that they have cancer, its shock. I was no different.

 

On Tuesday December 3rd, I went in for a long overdue doctor appointment, mostly worried about my cholesterol that hadn't been checked in 2 years. The doctor must have worried about something since he signed me up to do every test possible, including X-Ray and Cat scan. I was actually surprised he didn't sign me up for the SAT's and ACT's since he seemed to be covering everything possible.

 

In hindsight I should have suspected something, I had been losing some weight without trying, a couple of weeks waking up in cold sweats, and I was very, very tired most of the time. I could explain it all in my head, we have a 2 year old, and being sick all the time seems to be the norm. At the age of 40 I was trying to keep up with college players on the soccer field, so it was understandable that I was starting to fall behind. Unfortunately all my symptoms were lost in the traffic of just trying to be a 40 year old dad to a 2 year old, or at least that is what I told myself.

 

The next day I got a call in the the morning from the doctors nurse that the doctor wanted to see me later that morning. Again, something serious wasn't on my mind. Although I had a feeling doctors don't just call you in to talk about your bad cholesterol.

 

When the doctor sat me down, and looked up at me and told me "I have some bad news, you have Leukemia", I think my world just stopped at that moment. I can honestly say that I don't remember much of the rest of the conversation, just those words. Thank God that Cynthia was there to pick up the pieces that now were me. I just buried my face in my hands, and it was if the world had just halted to a stop. My world revolves around Cynthia and Christian, and suddenly I felt as if I was thrown out of orbit without any control.

 

Now any story about me and Leukemia can't be told without bringing up one of my very closest and dearest friends, Tyler Bledsoe. I couldn't do justice in trying to accurately reflect what a stand up guy Tyler is, but if I had a brother, I would want him to be like Tyler. Unfortunately Tyler was diagnosed with Leukemia back in early 2007, and has battled it like a Spartan. When I finally stepped out of looking inward and the "why me" thoughts, it immediately came to me that I have a role model in how to fight, and fight hard. You can follow Tyler's battle on his blog at http://bledsoebattle.blogspot.com/ . He is scheduled for a bone marrow in late January, and he is now building his strength up these past couple of weeks.

 

Now for the dry statistics, my White Blood Cell (WBC) was 189,000 and it should normally be in the 4000 to 11,000 range. They had double checked the results, and it was pretty clear that it was Leukemia. There are different types of Leukemia, and once I could gather myself, the focus shifted to finding out which type, since the treatments are very different.

 

By the way, I named the site "ftbwtw" which stands for Fighting the Battle - Winning the War. It comes from my Aunt Toni who is an inspiration since she has battled cancer for over 10 years, and is now in remission. She is the truly remarkable, her spirit and how she tackled this. She has been a shoulder I could lean on this past week. My aunt Donna has provided me some great comic relief, along with another shoulder to lean on. Someone they both just know the right thing to say.