Wednesday, December 03, 2008


We can't discuss details of USS Freedom yet....

So let's talk myeloma.

I have a primary care, a local hematology oncologist and two specialists in Boston. So, sometimes communication between the five of us is a problem. Throw in a holiday like say......Thanksgiving and there are some pretty frustrating delays.

During my 20 NOV visit with Miller I was told that my results would be available on Monday or Tuesday. Guess I should have asked which Monday or Tuesday because the call came in yesterday. It's raw data and I am trying to compare it to my Dr. Schlossman information.

Here's what I *think* I know.

On 21 AUG I saw Dr. Miller and my IGA immunoglobulins were 4940- Stage IIA

On 17 SEP I saw Dr. Schlossman and my IGA immunoglobulins were 5850 - Stage IIIA

On 20 NOV I saw Dr. Miller (after two full cycles of Revlimid w/ld Dex) and my IGA immunoglobulins were 3370 - Stage IA

So clearly Rev is working. I owe Dr. Miller a dollar. But I am disturbed that it jumped 910 in 26 days. Is that fast? Aggressive? Normal? I have sent a fax to Dr. Hochstin with these questions.

It is an enormous relief to know that there was a reason to put myself through this.

I *think* this will make the next series of two cycles easier to take. But who knows, I am such a whiner. I had to laugh when Dr. Miller said he was concerned with my side effects and the fact that I was having trouble tolerating the treatment. Why is no one taking perspective into account.

I am completely unprepared for all this. I have never suffered a serious injury. I have never been hospitalized other than the births of my two sons.....and let me be completely honest here....compared to some of the horror stories I have experiences were nothing. It took my sister *days* to have some of her kids. My sons practically fell out! From the time I felt a twinge, my water broke and Tommy showed up was four hours with only one of those being anything that could be catagorized as labor. With Frankie, I felt uncomfortable for a few hours, then crampy, then again maybe an hour of labor and fini. I have never broken a bone. I have never had an illness that lasted longer than a day except for chicken pox and that's an itch not a pain.

So of course, I have no tolerance.

If this were Grace or Jennifer going through this, they wouldn't even feel the side effects worth discussing. As a matter of fact with all Jen goes through with the MS, she might not even notice Revlimid side effects, lol!

Mind you, I am all about the full disclosure. Each time I meet someone and we discuss the cancer, the treatment.....I tell them right up front that I am whiny and I have a ridiculously low tolerance for pain. So no one can blame me if I am difficult......they were warned.


Googie Baba said...

Hi Maggie, I'm sorry you are having a hard time with the treatments. I don't think you are a whiner. I remember how difficult it was for my mom when she had cancer. I hope you feel better soon.

BostonMaggie said...

Thanks kiddo!

Mrs. K said...


When Nana used to sit too long in her rocking chair she would get up and be stiff. And, from her chair to her bedroom (not sure if you remember my grandparents house on Maple Rd)...she would go "Ooooh, mylegmylegmyleg" (LOL) over and over for the entire jaunt to the bedroom. And, she walked slow so it was about a 5 minute production.

If anyone complains about you being whiney...tell them you can't help it. It's our blood!

Stella said...

Maggie, readings will vary wildly. I had insane escalations in my liver function and wasn't sure if the cancer had spread. It didn't. Sounds like the Revlimid is working.

If you think you're a IA, I'm just going to agree. You're smart enough to know what's going on. You keep asking those doctors questions. Whine, whine, and whine some more. Demand answers. Doctors don't take perspective into account: they should.

Like you, I had never been really ill other than my appendix. Sometimes the treatment feels worse than the disease, but it really isn't, you know.

And I hope you get to keep going to those Navy ships. They're good medicine for you. Take care, be well, then be better.