One Year Later

February 10, 2011 I was in NEMC having my bone marrow re-introduced into my system via a catheter in my neck.

One year after my bone marrow transplant.

I opened this post because it seemed I should say something. But now I have nothing to say.

Poor Kate!

So I get here to Tufts/NEMC and I'm all "wah" that the valet was closed because I am so fatigued. But I "stalk the block" and get a good parking space.

It's just as crowded up here in infusion and there is no chair for me. They pull me in some little meeting room to put in my IV and draw my blood....then it's "catch and release" since nothing can happen for an hour. I go get a cup of tea, make phone calls, fool around online, etc.

Then a chair opens up and Kathleen tells me that today is pomidrinate. That's then one that takes two hours......so.....it was a good thing that I didn't get valet, since they close at 4 pm. Kathleen starts the steroid (20 minutes) an I ask her to page Kate, my nurse practitioner. Kathleen says she already has. LOL! Some things happen before I even think of them.

Kate comes in and I ask if she's ready for my problems and whiny weekend story. Kathleen comes in to administer the Velcade and start the pomidrinate. Kate uses this opportunity to step back into the hall and gets me two tootsie rolls. Very smart!

We talk about my bald spot, my IV site bruise, my leg/ankle/hip pain. I ask if I am her most difficult patient. She says I am challenging, but that's a compliment. She thought my story wasn't that bad. She was afraid I was backing out of the transplant. Like I could get away with that!

Kate decides we will bring Dr. Miller into this conversation. He holds my right leg, which is the one that hurts today and moves his thumb up my shin. It hurts. He is not pushing really, but it hurts. It aches with no touch. but his thumb hurts.

This is likely peripheral neuropathy from the Velcade. since the velcade has produced such great results in getting my IgA number, they decide to SKIP THE LAST INFUSION!!!!

M&Ms all around!

When I leave here shortly, no more IV chemo until at least mid-January. I still have to take the Revlimid until sunday night. You know I asked. I was offered a gift....I asked for two!

Could I Sleep Any More???

My mother and I were bookends at the kitchen table for dinner. Slow moving. Slow eating. I couldn't finish, neither did she. My Dad made us baked stuffed chicken breasts, baked potatoes.....giant baked potatoes, we could have split one and had some left. He's a blur of activity.

Earlier, he had called up to me...."Diane, what are you doing today?" I said there was nothing. "Ok, 'cause everything after 2:30 is Patriot's time!"

Kick-off was 4:15....but there are pre-game activities. Sure enough, he had everything done by 2:30.
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BTW, for all my grousing - and My Marine pointed out today that I am "an exceptional grouser" - about the flat tire & the $337.00.....I lucked out. It happened right at exit 8 and I wasn't alone and someone came to get us. It could have happened during my road trip far from home & that would have been awful.
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I am listening to @punditreview & @punproducer & @McQandO on Pundit Review Radio on WRKO. They are talking national politics for political junkies like me.

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.