Thursday, August 18, 2011

Nothing Worthwhile Ever Comes Easily

This is Not A Joke

I must thank all of you who were so kind to donate...those donations went straight into our gas tank and made it possible for us to head for the Tumor Vaccine Group in Seattle on very short notice. We had an awesome two-day road trip from So Cal to SEA, enjoying all the magnificent beauty---and so excited to finally be taking this step that my BP has jumped 20 points and is no longer in the basement. As hard as traveling is for me, I was determined to rise to the challenge just as surely as I refused to quit on Whitney despite the fatigue.

We arrived Wednesday evening and met with our hosts, K&B, to whom we are SO GRATEFUL. Their generous offer to let us stay with them in their beautiful home kept worry and stress off of us as we scrambled to get out the door and get to SEA for the vaccine clinical trial.

My first appointment to do background/history and get the first injection of vaccine was scheduled for today. We arrived with plenty of time to spare for our 9 a.m. appointment, so it was a leisurely stroll to the research center. They had a room ready for me as soon as I arrived, so we got settled in.

First step was to go through the informed consent again and sign all the paperwork again. After that, we did my list of medications and my history. Then we settled down in my room to wait for the next step: blood work, urinalysis, a tetanus shot, and getting the vaccine injection.

Unfortunately, my history is as far as we got! There was a bit of a discrepant issue regarding Mr. Puffy. You see, it turns out I’m allowed to be on the drug I’m currently taking (according to trial protocol established by the government), but I’m *NOT* allowed to be injecting Mr. Puffy with it before doing the brain MRI or else it constitutes treatment for active brain metastasis rather than a stable condition!

Believe me, nobody was happy to discover this or tell me this. I’m just such an unusual case with what we’ve done with Mr. Puffy that the issue slipped through the cracks until they were doing my history and the doctor realized the MRI I’d had was done AFTER a Mr. Puffy injection, which protocol does not allow.

But we came up with a plan whereby I will just refrain from getting anymore injections in Mr. Puffy, perhaps increase my oral medication, and then get another brain MRI done 30 days after the last Mr. Puffy treatment and GET QUALIFIED again, this time “for real”!

So we are of course disappointed, but we are not disheartened at all, as it’s just a matter of taking another 30+ days to jump through all the hoops again. So I should be able to get the MRI in September and get qualified around the beginning of October.

And this has still been such a worthwhile trip that we are not upset at all about having driven all the way here. I got to get off the sofa and road trip with one of my most favorite persons, visit people and make new friends, and see the incredible beauty of the Northwest. I am stronger for having done this trip; and I am still determined to get to the cure, whichever road takes me there. The doctors and nurses at the TVG have now met me in person, and we are all working very hard to get me into this clinical trial just as soon as possible.

With my rollercoaster of a life, you didn’t think it was going to be too easy, didja??? So, stay tuned!!!


Graphic Experience said...

Linda, you continue to inspire and amaze all of us with your spirit and drive. I love reading what you have to say, always...


Joan Flores said...

Stay strong!! You inspire me, too.