Category Archives: MDS

November hasn’t been a kind month

Posted in Blood test, Bone marrow transplant, cancer, MDS, Multiple myeloma, Uncategorized by

It will be a year tomorrow that Barclay was getting a blood test and was told to go to the ER immediately. He had almost 0 platelets, and extremely low RBC, WBC, and hemoglobins. Seriously bad.  I knew it was something bad and that this wasn’t just a blip.

 

He got in to see the local oncologist pretty quickly( like that same week). MDS was a possibility or aplastic anemia.  After getting more transfusions he got a BMB but the BMB wasn’t done right and the sample was inadequate.  This was when we were still with Sutter.  So eventually it was done correctly and the diagnosis was MDS high risk.

He then was transfusion-dependent and without a transplant would last maybe a year.

The rest is history.

Today was almost that year mark and another BMB.

Now my turn. It was right before Thanksgiving in 2003 when I had the fracture in my T-10.  Of course, I didn’t know that then or even that it was Multiple Myeloma. the NP I saw said a strained back. No Xray ( which would have at least seen something). I lived with that for 18 months till the spring of 2005 when I saw a doctor about some back surgery since my back still hadn’t really ever gotten 100% better.  Then I had an MRI. There was a plasmacytoma. The rest is history.

So November brings up some difficult emotions.

Transversing blood cancers is difficult. I’ve been fortunate that my Myeloma has responded when I’m in treatment.  I’m grateful I’m not starting treatment this month but hopefully can get to spring before I start.  B’s MDS is tricky and I hope he has a long if not permanent remission.

There’s always the questions” Why Us?” But I don’t bother with that anymore. Nor do I do prayers or the ‘God’ thing’.  Life is what it is and I believe we must live presently and with good intentions. There are no second-guessing these things.  I believe we must js\ust put one foot in front of the other and

remember what Bilbo Baggins says” It’s dangerous business going out your front door”.

It’s been a busy but productive week

Posted in Bone marrow transplant, camping, cancer, MDS, medicare, Uncategorized by

We had a nightmare drive to Sacramento on Tuesday. I have to say this really was the first time it was so awful. First off, we stopped to get gas and the car in front of us( so we couldn’t get to the pump) had what appeared to be someone living out of their car. We waited politely and waited and finally, I backed up and zoomed around to get to another pump.  The lady must have been in the bathroom washing, but then after she pumped her gas she proceeded to wash her car windows. I was getting frustrated at this point and this put us almost 15 minutes behind.

Then traffic was really heavy for some reason and I knew we would be late for B’s infusion appt( to flush his port and labs). We were 20 minutes late. That is a first.

Well, it all ended great with the NP telling us that the BMB results were excellent and chimera was 99%. Truly science is amazing.

We both got our Flu shots and both are arms a little sore. But not too bad. So that’s done.

B got his LLS reimbursement for the insurance so that’s a big deal and in the coming months will make a huge difference. Thank You LLS donors who make these grants possible.

Today I’m heading into AAA to sign up for the home insurance( that they canceled  and we now will be with them but they’re underwritten.) Plus it’s about $600. more annually. WTF!!!!

I might go to the gym afterward or I may just flake. I’ll see how it goes.

I was trying to plan another mini trip to Capitola but Airbnb’s are really expensive and so are hotels. We decided not to spend money on that. I checked New Brighton but it is all full, probably with retirees in huge RVs. 😦

Barclay is still processing going back to work but I don’t want to give up his SDI yet. That money is non-taxable so we will not owe next year. But it only goes thru December and that’s it. But it has been a huge blessing. If he goes back it won’t be his old job as that’s been given to a co-worker and he couldn’t really travel like he did.  His boss has indicated he could do something from home ( ideal ) but he’s still not sure. He’s only 4 1/2 months post-transplant and most people don’t go back to work for a year or not at all.

If anyone has any thoughts or input I’d appreciate the ideas as we definitely conflicted about it.

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Simple Sunday

Posted in California, Flylady, husband, MDS, Uncategorized by

A rainy evening with the wind. Plus, the temperatures have really dropped and we will need to start a fire in the woodstove.

Today, I’m doing the Living room zone and because October first is Tuesday another zone happens. That will be the entryway zone. I include our sunporch as that is the main door people see and use.  I brought in some of the geraniums and I think I will let them winter over in there. The sunporch is not heated but on sunny days it does warm up nicely.

I’m going to the gym later and then into Safeway for milk, cream, a whole chicken, and a few other things. My grocery bill has been low this week so I’m pleased. I made lentil soup from the new cookbook I splurged on for my birthday” Two Peas and their Pod”.

She doesn’t use a tomato base, but I always do. I think it adds more depth. I use the IP and it was delicious. This weeks menu includes the lentil soup, a homemade lasagna ( in the freezer), some sort of taco dinner, and maybe brinner with pancakes.  I’ve also been wanting spinach soup which is one of my favorite.

I used the “Two Peas” cookbook for a scone recipe and it was good but I made need to tweak it a little. I thought they were just a tad bit dense. I could have stirred them too much too as this will affect them. I’ll try again at some time.

Also, this week B has his appt with the transplant doctor who I assume is going to go over the BMB results and the chimera results. It all seemed good but we’ll see how he interprets it. Then B has labs and a port flush.

I’m planning on going into AAA this week and redo our house insurance that got canceled by AAA. They still offer it but with the new California Fair insurance. With all the wildfire claims, I think every insurance company is canceling their own policies and doing the rider with CFI.  Then I need to pay for B’s motorcycle registration too.

Five or(five hundred) on Friday

Posted in California, husband, MDS, Uncategorized by

It has been a LONG week.

We made it down to UCD fine even with traffic and the endoscopy went fine too. No problems with the prostate. He just has an enlarged bladder and does need to catheterize at least once a day. I guess if that’s the worse, it’s not so bad.

Yesterday though was a nightmare day.

  • first we got a letter stating AAA was canceling our house insurance because of fire dangers in California. Great. Now we will have to find a new insurer and it’s bound to be A LOT more expensive.
  • Then we get a letter actually 2 letters from the Cobra people for B’s insurance. We owe $710 per month. I thought we’d already had paid the first two months. I called and NOPE that was not to them. Great, more money out the window.
  • I called the dedicated hotline for employees and said we’d paid the $1200. So just this afternoon she called back and said NOPE, that was for June and July when the company transitioned to the new insurance. I looked at the paystub and she was right. Nothing was taken out.   Great:(
  • Then on a positive note and money. B got his LLS grant approved for MDS and they will reimburse him the first amount of the cobra just covering him. so we should get that and it’ll help. We will submit the amount for the second month next week.
  • Then I’m at the Sutter Medical site getting ready to pay the installment and I see another whole set of charges. WTF!!!!! So I call Sutter and she says oh they said (UHC) he wasn’t covered for those dates. By this time I was seeing fire and smoke was coming out of my ears. I then called UHC and the VERY nice rep says let me check. She checks and says clearly there was some wrong coding as he was covered. Give me a F#@king Break.
  • Let see, I think that’s everything. But there could be more I’m blocking out.

Well, I’m exhausted from it all. Too much paperwork, money stuff, and confusion. I think I see the wine bottle waiting for me.

Frugal Friday

Posted in Bone marrow transplant, budgeting, budgets, GoFundME, MDS, Uncategorized by

No, not really. Although we haven’t been spending money carelessly. Our grocery budget is our biggest variable expense. I budget $200 a week for everything including pet supplies, non-food items, wine, food and misc. That seems to be a good amount for us.

But when you factor in Costco trips like in August, I definitely go over.  The Costco trips are often items that last a few months if not more. I’ve tried separating out non-food and then I get all confused and lose track of what was what so if I just lump it all together it works better for me.

For August I’m trying out $125 a week and I’ll see how that goes.

We aren’t going on any trips this year due to the medical stuff so there are no expenses there.

We also can’t eat out as B can’t have restaurant food yet. Although I have gotten him In an Out french fries and a shake as he needs to gain back about 20lbs. So we don’t really have an eating out budget. I have gotten a pizza or two so there’s that.

We also don’t have any big projects around the house but there are a few things. We absolutely need to fix our step coming out the door. It is awkward and has two levels so he and our daughter will put down a new concrete step that covers both and goes out farther. We wanted to build a deck out level from the front door and then a step-down but a deck would probably run us $3-5,000. So not now.

We’re on the fence about getting more trees down. I think we will call and see about at least 2 and get an estimate. We still have too many trees that are very big around the house.  But that too is a very expensive project.

We still have co-pays on the medical side too and the GFM is being used for that but it’s getting low.   The $6,000 from the beginning of the year is almost paid off. The transplant co-pays haven’t even shown up yet. Yikes, that could be scary.

Well, all in all, we’re doing okay.

Simple Sunday

Posted in cooking, Flylady, MDS, Myeloma, simple foods, Uncategorized by

Wowza, it is hot!

We’re hitting the 101 mark today and I have the coolers on already at 75.

I just finished the LR zone and am deciding whether to go to the gym. I don’t want to aggravate my rib pain. Plus, I’m trying to decide whether this merits an x-ray.  If it’s a pulled muscle then it’ll slowly get better. If it’s a rib fracture, the question would be why? So, I think I’ll wait and see how it is tomorrow. I told my husband, that I’m pretty sure this happened last year but can’t find any notes relating to it.

I’m making a new recipe tonight ‘Roman Chicken’ that’s from Food Network. Mostly it’s just chicken, peppers, capers, onions and tomatoes. Not sure what makes it “Roman” but I’ll try it.

I finished a good mystery by Baldacci; ” The Fix”. It was a good spy mystery. Now I don’t have any books left so I may need to go down to the pet bookstore and see if there’s anything there.

It’s now later, and I decided NOT to go to the gym. Sunday is my favorite day there as all the regulars aren’t there. Plus there are no jump around classes although there is a yoga class.

B has two appts this week. Getting his orthopedic boot on Monday and Tuesday is clinic. His counts all went down a little but I guess that’s to be expected.

 

Friday things

Posted in cancer, decluttering, home stuff, husband, MDS, Uncategorized by

We’re off to Sacramento for Clinic and Labs. B still has diarrhea going on but the Predisone and Imodium should help. We think this is a small Graft vs Host going on since he is now off one of the anti-rejection drugs, Mycophenolate.  At least it isn’t getting worse. So, all in all, that’s good.

I had thought to stop at Costco on the way home and I still may do that. It kinda depends on how long we’re at clinic. I really need to get my receipt in there as I was charged twice for 2 things. That’s always awkward as I feel like ‘will they believe me’?? But, like I said, it depends on how I feel and what time we leave Sacto. B just has to sit in the car, so that is something to consider too.

I filled out my LLS reimbursement form using SS for the first time. I probably did it wrong and they’ll kick it back. I found, after I submitted, their list of what was needed and I didn’t copy the cards just the payments, so that’s probably what they’ll need. They can be quite fussy about it but then again, they are giving me money, so I guess it needs to be done to the letter.  I’ll just wait and see 😦

I started emptying the tent trailer and put some things in the barn. I’d like to completely empty it and wipe it down and then evaluate its condition. B likes to take his naps out there so I don’t think we’ll close it completely down.

Well, I guess it’s time to get going!

The gift of LIFE…

Posted in Bone marrow transplant, MDS, Uncategorized by

I have been wanting to write a post about the gift of life that ALLO donors give to their recipients. Many do not even know the person they are giving their stem cells to. It is a truly selfless act of both courage and bravery.

In our case, Barclay’s donor was his younger brother. RPN. Now there is some history here, so I will give a few details. Not a lot of details but some, as it’s complicated.

We have had little or no contact with either of his brothers for almost 20 years. This was mutual. The gist is there was an inheritance involved that was very substantial and the two brothers were included and Barclay was not. They stood by the monetary decision and did not offer to make it more equitable.  A lot of angry words were said and that’s that.

RPN, gave his brother the gift of life, a chance to have some good years ahead and that is priceless. So I can forgive the past simply because of this single act of sacrifice.  What RPN did was courageous and he did not hesitate.  This act was, I think, transformative for me and Barclay on many levels even the cellular one!!!!

The past is the past and I can forgive and move on.

Life is a strange journey and healing the past is always a good thing.

We want to live for Now and what has happened is just part of our history that makes us who we are.

On a bigger platform, to all the people that have been ALLO donors, you are truly heroes and thank you!

Simple Sunday

Posted in Bone marrow transplant, books, MDS, meal planning, Multiple myeloma, Uncategorized by

It has been a lovely couple of days just doing ‘normal’ stuff around the house and getting back to some daily routines.

I’m back going to the gym and my muscles can feel it. Especially doing weights. I’m also trying to keep my steps or walking over 6,000 a day. My legs can feel that too. But it is necessary.

I’m also back to menu planning and cooking. The other day I did a lovely roast chicken and also a crock pot pulled pork.  So leftovers are in the fridge ready to be used.

Thursday I went to Costco and spent a lot but much of it was bulk coffee( 2  2 1/2 lbs bags), toilet paper, paper towels, lots of non-food items.

My big splurge was buying the Dyson animal on sale. I had decided a while back that my old vacuum, a mighty mite, was going to need to be replaced, but what?  This vacuum is handheld and cordless and hangs on the wall. That’s a big plus, as our closet is small enough and the vacuum sits on the floor.  I’ve used it 3 times and love it. But since I bought it from Costco if in a few months I don’t love it, I will return it.

I’ve been reading a great deal which started down at the Kiwanis house. I’m loving the MCBeaton books and interestingly enough they are not cheap, even on Amazon. The two I found were from the clinics waiting rooms where there are some bookshelves of books for patients.  I’ve taken a few and have a nice stack to return. Oh yeah, the Kiwanis house had multiple shelves of paperbacks and I found some good ones there too. I might stop in and bring some there too.

Next week is already filled with doctor appts. Tuesday, my daughter will take B down for his labs and clinic. Wednesday I see my doctor and I didn’t want to have to drive two days in a row.yAll in all, life feels like it’s almost back to ‘normal’:) Probably, that won’t be really true for a long time but at least it is better than B getting transfusions and platelets every few days.

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.