Tag Archives: MDS

Things are going great!!

Posted in Bone marrow transplant, home stuff, husband, ikea, MDS, Multiple myeloma, Uncategorized by

First things first, TODAY is my 14th year since diagnosis. I was standing in our driveway and Barclay took the phone call from the awful doctor. Doesn’t matter, here I am!!!!  So onward. Next week I get my labs in the middle of all this and we’ll see what my numbers do. Up or down??? I’ll deal with it one way or another.

It’s the weekend and B has no labs till Monday so we can relax. I’m heading over to Ikea as they charged me for 2 paring knives but I only bought one. I’m not sure how that will work but I’ll try. Plus I bought this darling fold out bed for our daughter to sleep on here but then discovered that the couch does fold down to a bed. Okay, Barclay figured it out I just kinda looked at it and didn’t connect the dots. Oh, well.  So I will return that(insert sad face as it’s really cute). But I don’t need it now and then at home I’d have to store it so, decision made.

It’s all going really well and so far and now it’s just waiting till we can go home. Although next week is labs one day, clinic the next and then repeat so going home isn’t too feasible.

Tomorrow both kids are coming down so we can have Fathers day here.  They are doing a great job keeping things going at home. Which, surprisingly, is a lot of work mostly due to having pets, chickens and large garden areas.

We are off for a small walk and BTW Sacramento is having a serious cool down so we are VERY comfortable…. Todays high is only going to be 84 so really nice.

Day – 2 and counting…

Posted in Bone marrow transplant, MDS, Uncategorized by

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Well, he is still smiling and the hair is still there. He did get the Melphalan yesterday so it’s only a matter of time now that he’ll start to feel awful.

He gets another dose today as well.

But he is eating well for now which is great.

I’m still working on the insurance stuff with him going on Cobra and waiting for a callback.

They did send him an email but he can’t seem to find it right now.  But I’ll follow up tomorrow if I don’t get a callback today.

I’m heading down this morning after I do a few things.  It’s just me this morning and then tomorrow Sachi will go down. Tomorrow is D -1 so almost there.

Wintery days

Posted in Blood test, books, cancer, cooking, Uncategorized by

It is very cold and windy here but the sky is bright blue. Very California-y winter day.

We had a lovely Christmas and although I was going for complete minimalism, that didn’t exactly happen. But I think it was just the right amount of gifts and they were lovely. I received some new silicone spatulas( much needed), the DVD of Gone with the Wind, of course, the Vita-mix which I am absolutely loving and a Vitamix cookbook plus Ina Garten’s new cookbook too.

Gone with the wind by Margaret Mitchell was a book that shaped my outlook on life as an 11-year-old. Not the racist part of slave owners but the struggle to keep what was of value.  I was telling my children, that we actually went to NYC to see the movie at Radio City Music Hall. At least I think it was RCMH, not completely sure.  I must have read the book 10 times growing u along with A Tree Grows in Brooklyn.  Both were huge influences on me.

Anyway, then we had a great lasagna, cheese manicotti, a salad, and bread.  B is not drinking any alcohol with his treatment stuff so my daughter and I shared a nice chardonnay.

His numbers have been tanking and it’s mostly due to the chemo which is good that it’s working but until the good cells out do the bad ones, he will need more transfusions, unfortunately.

 

I drove down to Sacramento for my oncology appt and traffic was practically nonexistent and I made it in record time. All my labs are normal so I’ll see him again at the end of February. He was informative about MDS and did encourage us to have the brothers checked for being a possible donor. He said it’s a simple blood test to check that first. It will give B the best chance of success if one of them is a match. I guess we will swallow our pride and ask although I said that doesn’t mean I want to have them in my life. So we shall see.

It also appears the best route for working is not working and going on disability so we will do that next week.  At first, I thought B could work between appts but there is no letting up right now with needing transfusions and platelets. Plus he can’t risk being around anyone who might be sick.  So hopefully it goes quickly and smoothly which I think will happen.

Tonight I’m making a spinach soup using the Vitamix and it came out silky smooth. The recipe is one of made many times from the mystery cater stories by Diane Mott Davidson. I tell you, if you’ve thought about one and are undecided, I can tell you it is really amazing. Plus I’m baking potatoes and 2 small pieces of wild Alaskan sockeye salmon.

The tree is down and the ornaments away. The little live tree I’ll have B move this weekend as he will need the dolly to move it.  So, the house is back to it’s clean and tidy self.

It’s official….MDS high risk

Posted in Blood test, bread, Uncategorized by

So it was the local medical oncologist that had the biopsy results from the other Dr. The official diagnosis is Myelodysplastic syndrome high risk because of the 7q deletion.

So at least he doesn’t need to do the induction in the hospital if it was leukemia. I guess that’s something.

For now, it’s going to be the 5 days of chemo every 28 days. Hopefully, the drugs kill off the ‘blasts’ or baby leukemia cells which are bad and then his bone marrow will start producing the right cells. Also, that will mean less and fewer transfusions and platelets.  Then it will be a donor transplant. I seem to recall the transplant doctor saying hospital time a few weeks then outpatient. Fingers crossed that it works as there is a 50% chance it won’t and he’ll die. Or he’ll need to go back on some sort of treatment. 😦

Today, after he gets platelets which do go very quickly after the IV is in, we’re going to Costco so I can load up on organic greens for those smoothies and fruit. I really hate going this time of year with Christmas, but I also hate spending a lot of money on greens at the store when can get a big bag at Costco for the same price if not cheaper.  I will get some other things as well since we’re there and call it my weekly shopping.

I’ve got a new sourdough recipe I’m trying out and it’s on its second rise. But we’ll be gone for a few hours so It’ll be longer than usual.

I’m going over to the gym for a tiny bit while he’s at the infusion center. I can probably get a good 30 minutes in.

Some of my labs are in but this new patient portal is a PITA as it says results released in a few days( it gives the date). WTF, there my results and he’s viewed them so why??? I didn’t see the big 2 tests SPEP or Light chains but they will be coming in soon I suspect.

Oh well, if it goes up again, I’ll just have to not flip out and go with it. Fortunately, I’m not high risk and my numbers have never just shot up so that would give me time to adjust. I see my doctor next week right after Christmas.

I haven’t been too inspired with cooking dinners so we’ll see what I feel like tonight. Mostly I’ve done just what’s easy without a lot of thought. Last night was pinto beans, a frozen enchilada and TJ’s cheese tamales.