Friday, November 26, 2010

Grace Says I Am Obsessed With My Hair

She may have a point.

Today was the last infusion of the 5th cycle.

I am drinking tons of water. I want my time off (now until December 6th) to be the best it can be. I think I remember that it helps me recover more quickly. But I can't be sure. Was it a plan? Or a successful plan? If it was successful before, will it still work now? I don't know, but someone please ask me Monday and then jot down the results.

Grace and I met with the transplant coordinator, Denise.

I was way out of it. It was a tough week. Some infusion rooms are shared, some are singles with a geri chair. Some have a gurney....today I was grateful for the gurney. I wanted to be clear for the transplant discussion, so I skipped pain meds and ativan. Poor Grace had to watch my face while they dug for a vein in my hand. With no pain meds....that was no fun. Then I laid down on the gurney, lol.

So in comes Denise with her files. We go over some routine stuff. Yes, I have multiple myeloma. I keep talking about it to people you know. My family. My friends. I keep saying it. I am hoping someone looks at me and says "Bullshit!" "For pity's sake, get a grip. It's no big deal." But no one does.

This is not to say that people are not cheerful and hopeful and optimistic. But no one tells me what I want to hear. I want to hear that I am wrong. That I have misinterpreted something.

One of the nurses reduced the process to this "We are going to bring you to Death's Door....and then we will rescue you."

I hear Father Mahoney in my head leading us in Stations...."I am wearied with sighing."

So Denise runs through things. Some things are not as bad a I thought...or at least they are horrifying in a new way, lol. The first part, the harvest, the collection part does take 14 to 17 days. But they are outpatient days. I can stay with my parents. Why is this better? Number one, privacy. For someone who exposes her whole life out here, I value privacy. But what price privacy? A bathroom on the second floor, a bed on the third floor. I can deal with that or work around it.

I ask her about the next bone marrow biopsy. I have had one and my "involvement" was 70%. I have been reading that some doctors will not do the stem cell transplant unless the patient's "involvement" is less than 5%. I am worried that if I don't hit 5% I will be disqualified. Denise says she will check with Dr. Miller, but she believes his threshold is 20% and I should not worry. He will not cancel it, he will postpone it. He will order two more cycles if I don't hit 20%. So that was a relief. Because to have gone through this only to be disqualified would have made me mental.

But then giving me the stem cells back is inpatient for three to four weeks. I am relatively sure that I will not be allowing many visitors. And those will be infrequent. I have already informed several people that they are "not" allowed to come see me.

Denise asks if we have questions. I tell her I know my question is silly, but it's my question. I tell her that the thing that bothered me most was during my last hospitalization, I couldn't shower and wash my hair, will I be able to do that.

Poor Grace! Poor Denise! I look at their faces. I won't have any hair to wash.

Denise leaves and Grace tells me I am obsessed with my hair. She may have a point.

7 comments:

Rachael said...

As far as you valuing privacy, I will say this is very true!
You will not even talk to us through the bathroom door - even if you're only brushing your teeth!
;)

Eagle1 said...

There are many, far worse, things o be obsessed with.

Faulkner said (in part): "I believe that man will not merely endure: he will prevail. He is immortal, not because he alone among creatures has an inexhaustible voice, but because he has a soul, a spirit capable of compassion and sacrifice and endurance. The poet's, the writer's, duty is to write about these things. It is his privilege to help man endure by lifting his heart, by reminding him of the courage and honor and hope and pride and compassion and pity and sacrifice which have been the glory of his past."

Keep writing, keep inspiring!

Stella said...

Somewhere, someone or many someones, are thanking you for your reflections, knowing that they are not alone.

I don't waste my time being irreverent with just anyone. All cancers are different... still, there's a commonality with all of us. The neutropenea, exhaustion, fear, nausea... but, I'm sure you don't need me to tell you that.

Here's my story, and I'm sticking to it.

Two weeks after I went through my first chemo treatment, I started losing my hair. I thought, "I'll be damned if I wake up every morning with clumps of hair all over my pillow." I immediately shaved my head.

A couple of hours later, I went to the gym. A trainer I knew who, BTW, had one of the most pronounced Boston accent I ever heard, announced loudly from far corner of the gym, "Girl, you got guts." When a Bostonian says that, you know the statement is the truth. (Well, excepting politics...)

Hair is highly overrated. I decided to have fun when I went bald and got temporary tattoos. One day, I stenciled a "?" on the back of my head.

I found the biggest earrings I could find and wore them. Proudly.

I repeated Molly Ivins' mantra daily:

"I just finished with nine months of treatment for cancer. First they poison you, then they mutilate you, then they burn you. I’ve had more fun (on a blind date). And when it’s over, you’re so glad that you’re grateful to absolutely everyone. And I am. The trouble is, I’m not a better person. I was in great hopes that confronting my own mortality would make me deeper, more thoughtful. Many lovely people sent books on how to find a more spiritual meaning in life. My response was, ‘Oh, hell, I can’t go on a spiritual journey—I’m constipated."

I found a "Multiple Myeloma Forum" at http://www.myelomaforums.com/forums/viewtopic.php?f=30&t=25

This quote resonated with me: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Your courage and reflections on multiple myeloma will help many feel that they are not alone when they stumble upon your blog. I hope you realize you are of far more value than your hair.

I can't write anything pithy or clever: just praying for you to get well.

Stella said...

I found a myeloma forum: http://www.myelomaforums.com/forums/viewtopic.php?f=30&t=257. This quote particularly reminded me of you" “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

I know your courage and reflections on multiple myeloma will help many feel that they are not alone when they stumble upon your blog, not to mention the people ;who admire you for your courage and intellect. Forget about your hair--you are of far more value than your hair.

I started losing my hair two weeks after chemo 1 while shampooing my hair. I refused to have hair fall all over the pillow, clump by clump. Too depressing. I grabbed a pair of scissors, cut of my hair, then shaved my head utterly bald.

I went to the gym. A trainer with the thickest Boston accent I ever heard, yelled across the room, "Girl, you got guts!" I realized that a comment from a true Bostonian should be taken at face value. (Except, of course, when it comes to politics...)

Bald became fun. I wore temporary tattoos. One of my favorites was single character on the back of my skull: "?" I bought the biggest earrings I could find. And I never had so many offers for a date. I began to wonder why I didn't shave my head when I was unattached.

I often read the following quote from Molly Ivins and hope this helps:

"I just finished with nine months of treatment for cancer. First they poison you, then they mutilate you, then they burn you. I’ve had more fun (on blind dates).... I was in great hopes that confronting my own mortality would make me deeper, more thoughtful. Many lovely people sent books on how to find a more spiritual meaning in life. My response was, ‘Oh, hell, I can’t go on a spiritual journey—I’m constipated.'"

And I can't write anything pithy or clever like her. I am praying for you to get well.

Kanani said...

Okay, so what we do is we look for a Katy Perry wig for you. One --not attached to Russell Brand. I'm thinking long, bangs, brown, with pink and purple thingees in it.

Kanani said...

Here. You will look brilliant in this!

Mrs. Diva said...

Well, if I decide to storm your hospital I'm bringing a male stripper and a bottle of Patron ;)