Simple Sunday

Whew, jury duty was brutal. We ended up a hung jury as one juror was deadlocked. I at first was on the not guilty side and then after reviewing all the evidence went with a guilty verdict. But it didn’t change the outcome as a mistrial was declared. Not sure how the lawyers proceed but that’s not my worry. I was completely wiped out by the end.

It’s raining here quite hard so no walk today. The Frogg Toggs I got for Christmas needs to be returned as they don’t fit quite right. So no walking today unless it lets up( just checked weather and no letting up).

I’m planning on going to the gym today as tomorrow is my prep day for the dreaded colonoscopy.  I’m sure I’ll get thru as I’ve clearly been thru worst.

I need to get my labs done this week too and think I’ll plan on Thursday.  I see my doctor in February(middle) so there’s time but I like to know my results before. If it continues as it has been my rise should be around 11 points taking me to @ 65mg/L Kappa light chains. The ratio will probably go up to. I actually feel ok but Myeloma is tricky that way and that’s why some people don’t get diagnosed till a fracture like I did. Well, no sense worrying about that now.

Yesterday I made lovely baked potato soup. It came out great. I used the Vitamix to blend and it came out very smooth. Tonight I’m making breakfast for dinner to keep it light. Just scrambled eggs, maybe pancakes and/ or toast. I might do some of Adelle’s chicken sausage as I need to use that up.

 

Monday Blues

It’s raining and I’m not walking and it’s 5:30 am. I haven’t bought the Frogg Toggs yet so I don’t have any rain gear. I guess I’ll get my ass in gear and do that this week as I don’t mind the rain as long as I’m covered up.

It hasn’t been a great week. I had some pain in my side last week and it turned out to be a mild case of diverticulitis. So now I’m stuck on antibiotics which wouldn’t be so bad but there’s 2 and one is one that is NO alcohol(wine for me) as it will give you a violent reaction. So not fun for me as I love my ritual of wine in the evening. Well, maybe change is good.

Then my CBC and CMP came in and they were all fine. Unfortunately, my Kappa light chains went up another 11 points to 55.7 and Lambda went down so that means the ratio went up( not good) to 5. 1.  I’m not freaking out but it’s clearly not a good sign. Treatment is out there again the question would when is my doctor going to think it should start. He still seems to think my numbers too low. They are low and I don’t want to start Velcade soon but time is ticking and I don’t want to have fractures or let my numbers get too high. Granted they are still low as when I started treatment before they were over 1000mg/L. I guess it’s just wait and wait some more.

I did do quite a bit of house tidying this morning. I decided I needed to do something or I was going to go stir crazy. So I swished and swiped the bathroom, tidied my office area, mopped the kitchen floor and washed some of the entryway windows. I plan to go out and put on the gas heater and clean the sun porch.

Well, on that depressing note I’ll close.

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.

Birthday trip

We did it!!

This is our birthdays’ gift… B’s is September 22( the same as Bilbo’s and Frodo’s, ( so lucky) and mine is next week on the 30th…..  we are getting ‘older” ( ha, ha, no really we are now old!!

I had reserved 2 nights at Tahoe at Nevada Beach( our favorite). I wasn’t 100% sure that this was a good idea with Barclay just 4 months post-transplant but it turned out brilliant.

The weather was cool at night but the days were picture perfect fall in Tahoe. Plus the campground was almost all ‘old’er people and not a ton of kids running around or riding bikes. The beach was almost empty as was the beach parking lot.

In a word, it was my idea of perfect.

This was also a big deal as B hasn’t really driven any length since really his diagnosis so also a big accomplishment. Next week we see the transplant doctor and he should be able to tell us more about the BMB results which looked great. No MDS, no leukemia, the part we didn’t get yet was the donor cells amount. So hopefully that’s all good too. UNADJUSTEDNONRAW_thumb_398.jpg

We certainly hope it’s all good.

Today, Barclay has his labs in Auburn instead of UCD med center Sacramento. Then we plan to do a call to AARP to sign him up for supplemental plan F. I’m hoping to get Part D signed up at the same time.  So we may be on the phone for a while.  There is still some billing issues we’re dealing with when the Cobra wasn’t activated. I’ve called twice but it still seems to show we owe that money. I’ll wait to deal with that as I can really only handle one thing at a time.

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This is our sweet tent trailer that we really love and our anniversary present you can see there is the Honda generator. Wow, so quiet and definitely worth it.

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The handsome transplant patient 4 months post-transplant and almost a year since the horrible diagnosis. A new life.  A huge shout out of a” thank you” to his brother, Rodman, for the gift of life. A true gift.

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Here’s the happy camper with morning coffee!!

 

 

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!