sjgcbm's Cancer Blog

July 4, 2008

July 4 Update and random thoughts

Views: 30

So I took myself off Thalidomide earlier this week because the neuropathy had spread which scared the heck out of me and I knew I couldn’t drive like that, or even hold a pencil to write. Doctor has approved the move (who knows what would have happened if he had not).

I am transitioning from stage one treatment (chemo) done very close to home in the “chemo” division” of the practice, to the “stem cell transplant division” of the practice a bit of distance away. My last appointment with the team I have been working with since April is this coming Tuesday.

First major appoitnment (2.5 hours) with the transplant folks is on July 9. Life will surely change when that process starts. I am guessing the thalidomide issue will end up being tranferred too. But for the next week or so, no more Thalidomide!

After fighting a lack of appetite and not really eating anything but dairy for quite a few days (meaning minimal meat protein) a friend had us to dinner last night and I found I could tolerate buffalo! I ate a whole hamburger! Since red meat has been off my plate for quite some time, and white meats have to be gently seasoned, this adds a nice choice. Has anyone else found this to be true? Am thinking of trying elk – nt easily found here on the East Coast – but have heard it is very mild and great eating. Sounds like it might be worth a 10 minute web search :-)

Remember, please that my firend Pam who posted the “unicorn” comment is a medical librarian (and her meyloma blog is still posted below. I am a health educator by training and have worked in medical associations since the 90’s. There is no doubt I have access to medical information through my career and training – way more than if I was still working at the adoption agency or teaching sociology (early career jobs).

Sometimes that does not make my oncology team particularly happy. I ask way too many questions and know way too much about the medical care delivery system.

But it also means that the doctors I work closely with (on my job) have mostly stepped up to the plate. I am in an incredibly lucky position not to have to worry about my job, and to have the support of both the staff and the Board of Directors. On days when I have not been able to work full time I remind myself of that. And when I can’t find naswers on the web I have back up from a few friends who are doctors who have offered to do that for me. I haven’t needed to ask yet, but I really appreciate knowing I can.

So now I am off to have a morning cup of tea – still not able to enjoy coffee anymore, although I am going to try to drink it cold over the weekend to see if that helps :-)

I did spend a few minutes this morning deleting early postings by me (and comments from others). Just trying to keep the blog a little cleaner (or perhaps just a contimuation of cleaning my office email inbox?).

Enjoy the 4th everyone. It is my favorite holiday here in Washington DC, where I am reminding on a daily basis (my commute takes me right past the Lincoln Monument) how lucky I am that my grandparents came to this wonderful country where the family at first struggled, but has thrived and survived. God Bless America and God Bless all of us.

Posted on July 4, 2008 at 6:09:25 AM by Sarajane Garten ( July 4 Update and random thoughts, 2 comments)

I have a friend tha is helping the
doctors take care her. And yes, she says they are a little
behind on what is going on LOL. Any way have a good
4th.

Posted on July 4, 2008 at 9:59:59 AM by karlak

I am sure I bugged the doctors with all my questions. I felt I had the right to know what was going on with my body.
Have a great day…..
Hugs,
Joyce

Posted on July 4, 2008 at 1:32:15 PM by joyce

July 3, 2008

WHAT IS MYELOMA?

Views: 69

For friends and family who might like to know what myeloma is, I found a definition online.

Multiple Myeloma is literally an “oma,” or tumor, involving the “myelo,” or blood-producing cells in the bone marrow. The cells that are affected are plasma cells (a type of white blood cell), which are our antibody- (immunoglobulin-) producing cells. A malignant or cancerous plasma cell is called a myeloma cell. Multiple Myeloma is called “multiple” since there are frequently multiple patches or areas in the bones where tumors or lesions have developed. A single lesion is called a solitary plasmacytoma.

Myeloma affects the places where bone marrow is normally active in an adult. This marrow is in the hollow area within the bones of the spine, skull, and pelvic bones, the rib cage, and the areas around the shoulders and hips. The areas usually not affected are the extremities: that is the hands, feet, and lower arm/leg regions. This is very important since the function of these critical areas is usually fully retained.

Posted on July 3, 2008 at 7:15:04 AM by Sarajane Garten ( WHAT IS MYELOMA?, 3 comments)

hi SJ - or they can just go to the blog I did for you and learn more than they every wanted to know.
anyhow – this is why you are a unicorn (which you can put into your own page and delete this comment if you wish):
Sarajane the unicorn

One of the first things they teach you in medical school is that when you hear hoofbeats, think horses, not zebras. This means that you should start your differential diagnosis with the most common diseases that match the patient’s symptoms. But multiple myeloma is a zebra. Less than 20,000 Americans are diagnosed with multiple myeloma each year, making it a relatively rate type of cancer. And the symptoms are amorphous – feeling tired, some aches and pains – that could be almost anything – or nothing, especially as we get older.

And Sarajane is a rare zebra, a unicorn. Of the estimated 19920 American diagnosed with multiple myeloma in 2008, only 8720 are women, only 20% of all patients are in Sarajane’s age group, and and prevalence in white women is quite low, compared to other groups. Add in that Sarajane is both Jewish and bisexual – and, apparently, allergic to thalidomide – and she is an N of 1 – truly a rare and beautiful unicorn.

I hope her health care team pays attention to how rare she is.
love
pam

Posted on July 3, 2008 at 5:53:44 PM by pvanhine (unverified)

Thanks for that posting. My mother had myeloma when she was in her 80’s not too many years before she died. She died from a heart attack in 1988. I never learned much about the kind she had at the time so this was very interesting. All I remember was that they did surgery and cut a large very deep hunk out of her upper arm.
Take care. My thoughts and prayers are with you.
Hugs,
Joyce

Posted on July 3, 2008 at 7:46:56 PM by joyce

Well this is sounding a bit like a medical class but well worth the read. Thanks for the education girls. This is one heck of a blog.
Weezie.

Posted on July 4, 2008 at 4:31:34 AM by weezie

May 23, 2008

Gift fom a friend

Views: 593

My best friend is a medical librarian who put together a blog on myeloma:http://multiplemyeloma.wordpress.com/

I have not read it all the way through, but I do appreciate her help. It appears open to anyone who wants to look.

24 hour business trip just left me exhausted.
Fatigue seems to be the name of the game today.

Sarajane

Posted on May 23, 2008 at 5:31:38 AM by Sarajane Garten ( Gift fom a friend, 1 comment)

May 18, 2008

Sarajane is Diagnosed

Views: 542

So as many of you know, Catherine and I have a thing about 25’s. Her birtday is October 25th, mine is June 25th. Our first wedding was on May 25th and our second (in Canada) was on July 25th.

Now we can add April 25th – the day I was diagnosed with multiple myeloma. Let’s assume the numerology is a token of good faith and future goodness, as all the other 25ths have been.

Posted on May 18, 2008 at 1:41:10 PM by Sarajane Garten ( Sarajane is Diagnosed, 1 comment)