November hasn’t been a kind month

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”.

Simple Sunday

Well, it’s a new week starting and I’m glad. Last week really was never-ending with stuff to do and I felt stressed all week.

We did get B signed up for Medicare Part D. We actually won’t use it for his Noxafil( Tier 5 drug) because it will be $4900. So we will keep the Cobra for now so that his prescriptions are covered that way. Hopefully, that will work. He won’t be on Noxafil forever, just maybe 3-4 more months.  So he is on Medicare and all signed up for Plan F and Part D.

This week I see my eye doctor for my quarterly check on my macular pucker. I’ll need my eye dilated which I hate. But it has to be done. I can’t see a lot out of my right eye but my left eye makes up for it.  Although when I went to renew my license and get the Real ID, I had to take the eye test and didn’t realize they test your eyes individually.  I panicked a little as I know that eye is around 20/60. but I squeaked by. Next time I’m not so sure. I could have surgery but it’s not guaranteed. But I still may go that route yet.

Other than that it will be a slow week and I need it.

I plan on going to the gym 3 times and keep walking in the mornings.

The fall chores are getting done and B has been busy doing stuff that needs attention. Painting, fixing some concrete steps, tidying the yard, putting away BBQs and all the fall things that need doing.

This week I plan on doing some painting outside on the window trim. That was the 2 windows he put in last month.

In not so good news, my Kappa light chains jumped 13points up. And my kappa/ lambda ratio really jumped to 3.68 mg/L. That’s because when my Kappa goes up my Lambda stays low so the ratio goes up.  Well, Fuck it, not much I can do and I do feel ok. I see Dr. L  at the very end of the month so once again, I’ll bring up when to start. I hope it can wait till 2020. I figure 2 more months and if it goes up 2 more times and hasn’t , hit 100 I can hold off on treatment. I don’t mind going back into treatment when necessary, it’s the dexamethasone that is so difficult. I pretty much lose 2 days a week. Oh well, F#*k it all. I’ve been doing this since 2005 so I guess I should be used to it. Although you kinda know you’ve been a cancer patient for so long, your family members forget to ask how your labs are.

This week is the kitchen zone so I will start that today.

Our fall weather is really spectacular. Leaves are turning and the mornings are chilly but by afternoon it’s just perfect. We had a fire outside last night because I wanted to.

It’s been a busy but productive week

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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Midweek musings

I had a good doctor visit. As I mentioned, my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m ok and not panicking. It went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with it for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on a 2-week clinic schedule and that will be very nice.

 

What’s next?

This is a busy week with appt’s almost every day.

Today I have an appt at DMV, yes, the dreaded DMV, to get my license renewed and try and get the real ID. The real ID requires a certified birth certificate and lots of other proof pf residency things. One reason I persisted in the NYC birth certificate debacle is I knew that this was coming. So we’ll see how it goes and I’ll report back.

Tomorrow is clinic and labs and my daughter has volunteered to drive.

Wednesday I see my oncologist so I didn’t want to have to drive 2 days in a row. I’m going to go over my old lab results when my light chains were over 1,000 mg/L. I just want to hear his assessment of when to be more concerned. I’m guessing he’ll say the same thing, that when my numbers are much higher.

Then Thursday is open.

Friday is back down to the urologist for an endoscopy to see if there is any blockage or how does the prostate look? It is an office procedure so no sedation.

We also need to get the oil changed in the car and will do that Thursday. B said he’d go. So that would be his first time out driving the Santa Fe in a while. He’s definitely able to do that now and isn’t shakey. So progress!

The zone this week is the living room and I finished that yesterday. Since our front room is small and there’s not a lot of clutter I was able to finish it in about 15 minutes. I washed windows, dusted, checked my plants and washed the mirrors. That’s about it. I do look regularly what to declutter but right now I’m content with what’s in the bookcase and also the Heywood hutch. In the Heywood is my pinecone ware so that stays. I do love looking at it and using it too!

Simple Sunday

A nice Sunday morning with cooler temperatures.

Getting ready to do the bedroom zone.

Plus its sheet day.

Yesterday I did a Walmart grocery pick up. I don’t shop Walmart but was interested in the pickup and I had a $10 off code. I bought quite a few organic items and them some pantry stuff I wanted. I was surprised at how easy it was and I didn’t have to go into the store. I’m not sure I would do it a lot but I have to say the prices were quite a bit less than Safeway.  Organic Valley milk was almost $2.00 less than Safeway. So were the Morningstar items. So those are big savings.  I also went to our little organic farm down the road and got $20 worth of veggies. The corn was excellent.

I’ll have to see how I feel about it over the next week.

I was able to book a night at Nevada Beach for B’s birthday. We may or may not take the tent trailer. Our old van can be used to sleep in so that’s an easier option. We found a nice 2017 Hummingbird RV by Jayco for a terrific price but it’s about 2 hours away. We were pretty gung ho about it but then backed off. I think since we really don’t have other camping plans this year we should save our money till next spring. It was a great price though. If we could see one locally it might make a difference.

It’s a gym day too and that’s it. Don’t need any groceries for a change.

The coming week is busy with 3 days of appts for B. We’ll get thru. After this week we should be on schedule for every 2 weeks. But there’s also my doctor appt and his BMB  early September so that will add some extra driving days. My daughter isn’t working yet so she’ll help with some appts which will be appreciated.

My labs should be in tomorrow. I’m guessing they went up and really there isn’t any more downward trends. So the question will when do we start Velcade again. Since my doctor is very conservative I may have to say I want to start when my Kappa light chains go to 100. It’s hard to know if I’m asymptomatic. But if it’s going the way it is it still may be a while. I went from 19.7 to 22.? to 25.? to ??? So 3 points a time. That’s every 6 weeks. The ratio at 2.33 so that’s above the high normal of 1.65

If I could hold off till next year, B will be in good shape and hopefully not need any interventions.

Who knows? Right?

Friday things

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!