Little bit of medical history

"I have learned in recent years to be acutely aware of every blessing that comes my way and I have learned to send up a prayer of thanks for every little one. I recognize and see them everywhere in my life."

 

For those of you that don’t know my history I’ll try to tell it as briefly as possible. In 2004 after many years of pain in my arms and abdomen, I was diagnosed with a rare autoimmune disease called Takayasu’s Arteritis. We found that over a period of at least 18 years, my aorta and several of the major arteries off the aorta had been damaged or destroyed by this disease. The subclavian arteries to both of my arms, my left vertebral artery to my brain and the celiac artery in my abdomen were all blocked and useless. However, make no mistake about it, our bodies are true miracles and when something like this happens, we grow collateral vessels, vessels that lay close to the originals and take over where there are blockages.

Control of my blood pressure and the status of my aortic heart valve became the biggest issues. I spent a couple of years on a variety of drug therapies, including low doses of chemotherapy medications, to stop the inflammation of this disease.

May 2009 I had open heart surgery to replace my aortic valve and at the same time a large tumor called a thymoma was removed from my chest. A very rare tumor. When describing it the surgeon called it the size of a “large hamburger.” It was declared a benign tumor and thought to be completely removed with no problems and an 8-9% chance of it recurring.


A couple weeks ago I found out that the RARE thing has grown back and is now twice the size or at least twice as long. It's pushing aside my trachea, sitting on my heart causing it to labor a little bit harder, pushing on my lung, some lesions are metastasized in the lining of my lung and its causing fluid in my pleural cavity. It's an inoperable tumor. Oh. We found it because I went to the doctor about a small lump in my neck and it turns out that lump is the tumor pushing up through the space between my collar bones.

This sounds really bad, huh? I'm still walking, talking and breathing. I do have some troublesome symptoms, but it's still one of those things that to look at me you wouldn't think I'm sick. In fact, I don't even get to be off work. I'm in the process of frustrating my doctors, pissing off the technicians and being an overall pain. (I make myself laugh when I say that, it's so close to truth) The disease doesn't scare me half as much as navigating the medical system. The stories I have to tell already (about the medical system)…My sister thinks I should write a book.

But deep breath. We now have a game plan with  Octreotide. Three injections once a month and then another scan to see if it’s working. I’ll start next Thursday so that any bad reaction I’ll have the weekend to recover.


I just shared this in an email with my new found Cousin Bonnie, and I think it’s worth posting here too: "I have learned in recent years to be acutely aware of every blessing that comes my way and I have learned to send up a prayer of thanks for every little one. I recognize and see them everywhere in my life."

This too, I’m sure is a blessing, a lesson, a chance to grow. I’ll try not to kick and scream too much while doing it.

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And and update

Thymoma: 80-90 Percent Update
After just six weeks, the drug therapy is working extremely well. CT Scan yesterday says it all.
“…with the tumor burden decreasing by 80 to 90% when compared with prior CT Scan”



The doctor says we’re going to continue to “hammer away” at it (clearly with the hammer metaphor he’s used to those tumors that don’t respond like this) for another six weeks or so and check again.
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Bone mets update:

There's no easy way to put this out there and I've decided to set the good natured joking aside and let you all know the update on my cancer of the thymus. An MRI scan shows that I have metastatic tumors in my L3 verterbre, some surrounding tissue and pelvic bone. And a CT scan shows that the original tumor has returned some to my neck/clavical area, it's broken through the treatment. Ohhhh yes...my left hip and thigh hurt like crazy when I'm up on them so I'm set up with some pretty good narcotics for pain and I'm going for a consultation next week on radiation to those tumors for pain control. There have been a number of very helpful people driving me to appointments, keeping me busy with visits and doing some grocery shopping for me. I really appreciate all the help and believe me plan on using everyone I can get for help :) I need to make a chart next to keep everyone straight! Oh I do want to kid right now. Please feel free to ask me any questions, I'm totally open and there is no way to cover everything here. I'm being scheduled for a consultation at Stanford some time in the next month or so and most important, the weekend of Aug 20th I'm gathering with my family for a great celebration of life in Vancouver, WA. Very much looking foward to that!
Love to you all, Linda