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Mixed bag


Trebs

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Today was a good day - first one since I got discharged last Wed. I've been really tired all of the time - it's been an effort to just get up and eat. Today I've done dishes, laundry and just generally been able to FUNCTION around the house - it feels great! Caught up on some bills and paperwork - including finally filling out my absentee ballot (Go Obama!)

 

Yesterday I had back to back doctor appointments. First was Dr Swanson (the surgeon) - he took out the drain, staples and dressing over my incision. f**king scar is 13 inches long. But it is healing really well and Dr Swanson was very happy with my progress. He understands I'm going to be busy with all of my other medical needs so he said I didn't need any more followups - just drop him a line in a couple weeks to let him know how I'm doing.

 

By the time I was done there, my appointment with Dr Spears (hematologist) was just 20 minutes away. Stopped for a jamba juice then up to Spears' office. All the running around, and I had left without taking a vicodin, by the time I got to the office I was hurting. Mentioned it to Dr Spears and he offers a pain shot of demerol - SWEET.

 

So additional pathology has come back on the spleen and lymph node they took out. Turns out - I don't have CLL with a possible secondary of mantle cell lymphoma (MCL). I JUST have MCL - which can disguise itself to look like CLL. Now the good news is they made the diagnosis this quickly - sometimes it takes a while for them to figure out its MCL. The bad news is whereas CLL has great prognosis and relatively easy treatment, MCL is worse. The previous visit, he had narrowed down what treatment I'd have down to two choices. Now with diagnosis of pure MCL (which he confirmed by checking with two other doctors), he said the best therapy for me would be what's called "HyperCVAD".

 

Unlike CLL's treatment of RCF (which can be done as outpatient), HyperCVAD will be as inpatient. He wants me to start next monday (he would have started this week, but wants to give my splenectomy recovery one more week). So, next monday morning, the hospital will call me to tell me when to come in (ie, when they'll have a bed free). I'll be in for 4-5 days (likely 4 but if complications, 5). Then home for a bit over 2 weeks and then back to the hospital again for another 4 days of treatment. The drugs with HyperCVAD are more intense than what I had with RCF - hair loss is pretty much guaranteed. This will go on for a while - probably through mid-March if I am lucky, or later like mid-June if need be.

 

News depressed me for a bit yesterday - I had talked myself into thinking that I was done with the hospital. It does help to focus on the positives - they diagnosed it early, they're starting treatment early and I'm 44 - most studies are of patients 65+... Of the studies with under-65, the response rates to the treatment are EXTREMELY good. And I REALLY lucked out to get a doctor that I like a lot, who totally involves me in all discussions of what is going on, and who just... CARES.

 

There are only about 1500 new cases of MCL a year in the US - joked with Dan, why couldn't I have those kind of odds when playing the lottery or slots... And its frankly scary... but still getting a ton of support and just the fact of feeling SO much better today helps my outlook on this all. It felt GREAT doing the dishes, washing sheets, opening the front blinds and airing out the house - just was such a nice day out today.

 

And looking forward to tomorrow... and the day after... etc.

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"Attitude is a critical ingredient for coping..." says the article on MCL and I must add that your attitude is fantastic. As saddened as I am that you and Dan should have to go through this, I feel confident that it'll turn out alright. You have a lot of factors in your favor.

 

Still sending best wishes to you both,

 

Dion

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Thank you Dion. I did break down a bit on Monday, but you're right - I know my attitude is going to play a big role in my recovery... So though its helpful and healthy to let go once in a while (and thankfully inside of Dan's big hugs), overall I need to try to focus on the positives - and there are many...

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One thing that helps is reminding yourself that it could be worse. I know that all those tests can be scary, especially at the beginning. I know you're tough enough to beat this thing. It's great that you have someone there to support you along the way. I was just curious though. Have they mentioned anything about a bone marrow transplant?

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The insurance approved me for the referral to Stanford (where they'll do the bone marrow) - and Dr Spears talked to Stanford and has everything set except an actual appointment. Stanford is supposed to call me to schedule me - they haven't yet, but should call within a day or two (if I don't hear anything by tomorrow, I'll call Dr Spears' office and have them follow up again).

 

My understanding is they'll pull out some marrow (or a lot - eek), and then process it to separate out good from bad, and then culture to grow the good. Then down the line, after the chemo and potential radiation have killed off all of my own bone marrow, they'll put the good bone marrow back in. As far as schedule, as long as Stanford schedules and extracts the bone marrow before my 2nd round of chemo (ie, no more than 6 weeks from now), he's comfortable with that.

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Good marrow and bad marrow...

 

Two marrow! Two marrow! I love ya! Two marrow! It's only a day away!

 

*coughs* ... sorry

 

Thanks for keeping us all updated Trebbie... sending mucho virtual :hug: s your way.

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Hehe. Marrow.

 

Have you named your 13 inch scar yet? Something that big needs it's own name.

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Trebs,

 

It sounds like you still have a very good attitude. That's great! It also seems you have a good prognosis. Hang in there with the treatments and tell Dan that he has to stay home with you on November 4. :D

 

:hug: for both of you.

 

Mike

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BTW, was the spleen a new world's record? Dan thought it might be (although we know he exaggerates things on the rare occasion). :lol:

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You came to mind several times today and I'm glad to see you posted. Hope things continue to improve for you. :hug:

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