Chemo #9

Last Tuesday Garrett finished his 9th dose of Adriamycin chemotherapy. With blood counts on the rise we have good reason to believe this chemo is acting on the cancer in Garrett’s bone marrow and hopefully the tumors in the rest of his body. Even with rising blood counts, he needed a blood transfusion last Friday. Upon seeing Garrett’s lab results at the chemo appointment four days later, Tuesday, his doctor shouted “yahoo!” in the hallway before coming in the exam room to give Garrett the news… highest blood counts in months! The transfusion did its job well!

When we get back from vacation we’re planning to start the hyperbaric oxygen therapy that we had a consult on back in early April. The chemo alone does not seem to be helping his skin tumor to shrink or heal, so this is our next best idea to improve that condition and we hope the extra oxygen his entire body will acquire during the treatment will help him to feel good in general.

We're focusing on relaxation and calorie intake this week :)

Still on a Roll

After last weeks annoyance of seeing the doctor who was filling in for Dr. Ye, we finally got back to our normal routine, at our normal office, on our normal day. This is my 5th week out from my last blood transfusion and my red blood cell level (HGB for short) was still up at 6.4 and my platelets which is apparently why the fill in doctor last week delayed chemo had raised from 31,000 to 36,000.

This all of course confirmed my suspicions from last week that the other doctor was wrong in what he did and was just being way too cautious. I was even able to vent my frustrations to Dr. Ye on the issue and he actually agreed with me, not that that did any good but it just felt good that Dr. Ye felt the same way I did. The other reason the other doctor delayed chemo was because he wanted to discuss the possibility of trying another chemo drug. Turns out it is pretty much only approved by insurance companies for breast cancer patients and there is pretty much no way they would approve it for me. Thats a side story I wish I could complain about. There are dozens of drugs out there that would possibly work on me that will never be tried because insurance companies will not approve them just to be tested on a patient.

Anywho, we were able to go through with chemo yesterday and it was great to have the rational thinking Dr. Ye back. The awesome news though is that I don't even have to go in for the next blood transfusion until the end of next week and thats only because Dr. Ye wants to make sure I have my body in shape to have the best vacation down to California possible, not neccesarily because the blood levels are requiring it yet. This is going to make it 6 WEEKS between transfusions. If we can keep this up instead of the 3-4 weeks it has been the last couple of years, I also will have to worry less about the iron over load that has been a threat.

All in all, if we could just find out and treat this stupid vision problem I have everything would be great. My goal at this time is just to get back working on a somewhat normal basis and right not that is one of the only things holding me back. Everything else is going relatively well, which is a great feeling.

Annoyed in Olympia

So this post is just a vent for my annoying day. Today is my normal day of getting chemo every two weeks, but it turns out my doctors office just happened to schedule my appointment this time around on my normal doctors day off. The problem with this is that my case is so unique and complex that a doctor not familiar with my case can't just fill in and accurately tell me what I need to do. On chemo days Dr. Ye always has to take a look at my blood labs and make sure they are high enough to be able to do chemo. If they aren't high enough, we put chemo off and generally go over to the hospital for a blood transfusion.

Well the problem today was that this fill in doctor takes a look at the numbers for the labs and immediately thinks, these are too low, we need to get him right over to the hospital for a transfusion, no chemo this week, etc. Well this would be the case for a normal patient. I am NOT a normal patient. My normal lab numbers are generally something that a normal person would not be conscious with. For instance my hemoglobin level that I posted about last week was at 7.2. For my fourth week out from the last transfusion, this is an INCREDIBLE number. I don't know that I have been that high after four weeks in years. But this doctor not being familiar with my case, he sees that number and told MaryEllen and I that he would like to send us over for a transfusion.

I called all of this before hand when we were waiting for the doctor to come in. I even told the nurse taking my vitals that there was no reason for me to see a doctor unless it was Dr. Ye because they wouldn't understand my case and would not give accurate treatment. MaryEllen told me not to get worked up quite yet since we don't know what will happen. I knew better.

So basically I just calmly as I could told the doctor that he should probably go call Dr. Ye before he did anything else because he basically didn't know what the numbers he was looking at meant in regards to me. Surprise surprise he came back a couple minutes later basically with his tail between his legs having to admit that I was right and he was wrong.

I swear I wish I could just get my doctors license so I could control my treatment for days when my doctor is gone since this is not even the first time I have had to tell a person filling in that they are overreacting and I didn't need to do what they thought I did.

Moral of the story for those not familiar with the medical field, take control of your own care. You know your body better than any doctor ever could and don't just take a doctors word for things. If you feel something is wrong with what they are telling you, there probably is something wrong.

Thanks for letting me vent.

Hope Part 2

Garrett's Sneaky Ticklers Relay for Life team is hitting the track for 24 hours June 12-13 to support the American Cancer Society!  Garrett's name will be under the team member list soon, but you can go at any time and make a donation to one of us online (or print out a mail-in form) if you would like to help fund the type of cancer research that results in vaccine discoveries like Garrett posted earlier today! Donations to the American Cancer Society also fund preventative screening events & coverage, patient/survivor support services, family & caregiver support, educational programs and lobbying policy makers on behalf of cancer victims!


Dollars are appreciated, but also consider doing another great act instead like:


-Visit and/or walk with us in Seattle June 12-13!
-Share our story and online donation page with others
-Schedule cancer screenings for yourself this year
-Donate blood at your local blood bank or blood drive

Thank you for supporting us everyday, Garrett and I couldn't do all that we do without the love we get from all of you! 

New Hope

http://seattletimes.nwsource.com/html/localnews/2011734807_provenge30m.html

FINALLY! A cure for cancer. Not exactly what I need but a huge step in the right direction.

I haven't really researched the specifics of this drug or how it exactly works but the article claims it has been used for treating advanced tumors, which is basically what my cancer is. I know this is only for those afflicted with prostate cancer but just the fact that it is used in treating tumors gives me new hope that there are other drugs out there that may be in the FDA approval process or are going to be developed in the near future.

Now I know it is never good to get your hopes up too much but to me every cancer afflicted person should be ecstatic by the FDA's approval of this first ever vaccine for cancer. I can't even describe how amazing it would be to have a vaccine that would treat my tumors. No more chemo, no more radiation, etc.

Here's to hoping that the vaccine for whatever the heck I have is close to being developed.