Snow, Snow, and more snow! And a Re-birthday.

Well, as they say,” the best laid plans of mice and men”. Totally snowed out yesterday. I -80 closed the next exit above us. It still is closed this morning. I went in for my labs and the computers were all down and not working. There were 8 people waiting for them to come online. I just said I’d reschedule. So at that point, it was just cloudy and I headed down to the gym. By the time I left, it was raining and VERY windy. Even the Santa Fe , which is a heavy car, was getting buffeted around. By the time I was home, it was snowing and then really snowing. My daughter opted to work from home. Today she’s going in to the college and it looks mostly like rain.

So, no swimming for me again. This is getting kind of old. But there’s not much I can do except NOT be out there with all the ‘stupid people’ trying to get either to the snow or somewhere. CHP was on facebook saying ‘do not try the back roads as they are just as bad as the freeway’, which is closed. So, I’ll go down to the market and get some lettuce and salad stuff since we don’t have any. I plan to make some soup for dinner.

I’m reviewing what I want to do food pantry wise this summer. I know I don’t need any more jams or marmalades. I might do some strawberry if the berries look good. We’ve been using the salsas so I will do that again. the chicken broth has been great to have pressure canned but I could freeze that too. I would like to do more flash frozen corn and maybe some other veggies too. I’m planning on starting a pantry book for just this kind of thing. I must have tossed the one I was working on thinking it was a different book. I think that was the book I started during the pandemic for price points like at Costco etc. That’s okay, most of it I can recall.

My 17th re-birthday!

My wonderful family.

So, 17 years ago, I was admitted into the Sutter General Hospital, BMT unit. This day is called -1, because you are given the high dose Melphalan. Then it’s the next day is day 0 when the actual Stem Cells are given. It’s actually very anti-climatic as it is a bag hung up and then just on the IV drip and it’s over. Then it’s just a waiting game. It gets very rough around day 4 and then continues until your WBC, RBC all your counts start to increase. Mine started around day 12. I was released day 18 but had to be readmitted the next day because of spiking a fever. But after that, it was just a slow process. Honestly, it took a year to really recover. But I am grateful everyday for science, medical professionals, and my family’s support.

Now I’m facing another relapse, but I’ve gotten more time than lots of other myeloma buddies I have known.

So another part of the journey begins.

Understanding Myeloma

I thought I would put in a description of myeloma to help people understand what it is how it affects the body. Just FYI.

an, also called multiple myeloma, is a cancer of the plasma cells. Plasma cells are white blood cells that make antibodies that protect us from infection. In myeloma, the cells grow too much, crowding out normal cells in the bone marrow that make red blood cells, platelets, and other white blood cells.

Multiple myeloma is considered treatable, but generally incurable.[3] Remissions may be brought about with steroidschemotherapytargeted therapy, and stem cell transplant.[3] Bisphosphonatesand radiation therapy are sometimes used to reduce pain from bone lesions.[3][6]

I’ve relapsed now 5 times, this being the 5th. Last time the Velcade worked practically instantly but disease progression does come into play and the cancer cells get smarter and more resistant. This will be my 3rd time on Velcade so it is questionable how effective it will be. One thing for sure is I am not waiting till my Kappa light chains go to 600+. That’s what happened last time. This time I will say Kappa over 100mg/L let’s start treatment.

Thankful Thursday: I am thankful to still feel good enough to swim and go to the gym. Right now probably the one symptom I have may be decreased energy and I do start to lose more hair for some reason. Other than that, I’m asymptomatic.

Simple Sunday

We had a nice walk this morning and wow, Venus was right above the crescent moon. Very beautiful. Nobody was there initially and then the Le Foret guy( he comes out of the woods, honestly), showed up and then 2 others later. But we were done by that point.

This morning I’ve made the olive sourdough bread, a chocolate cake is baking, and I have a turkey breast in the crockpot. I’m just about done with the living room zone which BTW is just today and tomorrow and then Tuesday starts the entry zone. I would like to go to the nursery and get some kind of flower, like maybe some pansies. Our violets have gone crazy this year and are all over.

A week from today we’re heading to Bodega Bay. My son and daughter will hold down the fort. Both have to work so they’re here anyway. The weather looks nice enough with some wind which isn’t unusual. There are no hookups at Bodega so it will be l or solar.

I have my labs later this week and then I’ll get my results next week. I see Dr. L in mid-March. I would be pretty darn happy if my numbers stay about the same. Speaking of which, March 1st is my 16th re-birthday. Hard to believe, I was going in today and then getting Melphalan, and then on the 1st was when I got my stem cells. It’s really the melphalan that does you in It was hands down, the worst episode of my life. I remember we had terrible storms and looking out the window from the BMT unit over to the freeway and watching the rain and wind go sideways. That part of Sutter hospital has all been redone since then and actually the whole building I first got my chemo in was torn down and is now the Children’s Hospital.

Simple Sunday and my 15th SCT birthday!!

Yep, Tomorrow would have been day 0 of my stay at the BMT unit at Sutter Hospital in 2006.

I was in for 18 days ( I think) it may have been 17. The nurses and staff were amazing. They come in and do what needs to be done and then leave. Most days I just laid in bed but once a day I’d walk the hall with B just to move. Most of what I remember was it was raining outside a lot. I’d be awake at 3am and see sheets of rain going across the freeway. The reintroduction of Stem Cells is anti climatic. It’s a bag that’s feed into the IV and it’s done. The worst Chemo has already been done a few days before. After the Stem cells, it’s just hurry up and wait for your numbers to plunge to zero and then slowly your immune system starts to reboot. It’s about day 11-14 you start to see the change.

Well, I had 4 years of remission before I relapsed and went on Revlimid. That was in 2010. So I’m pretty lucky. Many of ‘old crowd’ of myelomers are gone and sadly so. I’m grateful everyday to be here to enjoy the life I have.

Simple Sunday news.

We had a lovely walk with NO one in the park but us and the geese. My feet still bother me but walking actually seems to help the neuropathy. Sunrise is so early that we are getting there at 6 but it’s already light. I’m thinking next week to try and back it up to 5:45 am but we’ll see. With daylight savings in march 6am will be 7am so definitely not walking that late.

I’m making a King Arthur batch of lemon ginger scones. They are baking.

I”m going to put a turkey breast in the crockpot for dinner. I’m hoping it comes out ok, if not I have tofu I will make anyway. My son isn’t crazy about turkey so the tofu will be an option.

We have a Home Depot order to pick up but my daughter and B will do that soon. We need some 3ft to put around the front area garden to keep Rosie the chicken out.

I am going to start the second coat of paint here in awhile.

This week I’m in the bedroom zone so the fresh paint on the door is a nice improvement. OOPs, looks like that was last week. this week is a split week of Living room and then March 1 entry ways!!!!

Simple Sunday

We finally have rain!!

We had to use umbrellas to walk but that was fine. Nobody was there but us so that’s always a treat.

I made some sugar cookie dough this morning and it’s in the fridge for a few hours to harden some. So I’ll start those a little later. I used an Alton Brown recipe and it was pretty straight forward.

If you follow Flylady, we are in the bathroom zone. I can finish mine in about 15 minutes as our bathroom is so small. I might add on a couple of extra tasks this week as well. I consolidated the Christmas ornaments into 1 larger plastic bin that B had bought at Home Depot. So that’s most of the Hallmark boxes and some felted animals when I use to put them out at Christmas on the nature table. I don’t do that anymore but they’re cute enough to keep for now. In the future, who knows? right.

So, as expected, my kappa light chains went up over 600,( high normal is 26.4) and the ratio also doubled( It was 74.3 mg/l ) normal high is 26.3. So Velcade will start in January. So since it’s 3 weeks on 1 week off, I’m thinking @ the second week of January and then a break the first week of February and so on. I guess we’ll have to see how it’s working as to how many rounds it’ll be. That’s a wait and see kind of thing. But one would hope, if it works on the myeloma, 6 months of treatment. Again, big unknowns since we don’t know how things will go. Disappointing but reality.

Tonight I’m cooking a roast chicken in my cast iron pan and I think I’ll make some buttered noodles to go with it as we are potatoed out from latkes. i wanted to get down to Krispy Kreme for donuts( you know to keep the cooking in oil thing going for Hanukkah:) but that may not happen.

B is actually going down for a doctor visit this week as I think they want to see him in person. I’m going to write a list of things for him to bring up because they continue to bother him. He is supposed to get his pneumonia shot and soon he will start revaccinating. I never did revaccinations as back in 2006 it wasn’t common then. Now, I think with autos it is. It is absolutely necessary with an allo transplant though as he had donor cells.

Well, I think I’m going to finish my Sunday chores and read some more of the Obama memoir. BTW, it is a great book and so full of compassion and insight. Definitely worth buying . One thing that really stood out to me was how many times he went to Walter Reed to see the wounded soldiers and how he would interact with them. I tried to look up how many times trump did it but I only found the 1 time shortly after his inauguration. I guess he couldn’t handle seeing the soldiers with one leg or arm or whatever. What a guy!:(

As 2019 comes to a close

It has been a year of highs and lows.

Lots of things were awful with B’s diagnosis and then being transfusion dependent. Lots of chemo visits weekly. But in spite of that, there have some great things. His brother was a 10/10 match for the BMT and that was amazing.

Being at UCD med center in the BMT unit for a month was hard, very hard, but it all went way better than expected. Staying at the Kiwanis in our friends RV was also great and made the whole experience of having to be there almost 3 weeks delightful. Being able to be just minutes from the clinic made it all worth it.

Recovery and gaining strength and energy back has been slow but sure. B is doing amazing and he is almost 7 months post-transplant.

There has been no major graft vs host although he must remain vigilant as that can happen even down the road.  Now he is tapering off immunosuppressants and that means less prescriptions. He will still need his vaccinations sometime next year.

So the year really was a mixed bag of emotions but overall I feel very positive about it. We did fine financially with the extra GoFund Me and the SDI. This week will be his last SDI and I am totally grateful to have had NOT to worry about money. After my transplant in 2006 and that following year, we were in serious,serious debt and it was awful. There were no GoFundME things or networks to receive financial help. I did have 2 friends that were very generous and that was a blessing.

At the end of this year, I feel grateful for my health and my children’s health. Both of my children have excellent jobs that they earned this year.

B will also officially retire as going back to full time just isn’t going to work for him. I will miss the paychecks and being able to travel with him, but honestly, he is 69 and with everything that has happened, life is just too short to go back to a job even if it’s only for another year. Who knows what will happen and he has this chance to retire. Social Security will be tough but hey, so what! We have struggled before and made it and if we can only do so much then so be it. Actually, I’m just grateful we have the little we will have coming in as it will cover our basics.

WE didn’t do any traveling and that was okay. We are planning something once a month for  2020. Next month we are planning an overnight to Chico where B has a free room at one of the nicer hotels downtown. We are planning to have dinner at a place I’ve wanted to go forever called the Red Tavern. I can’t remember where I read about it over 5 years ago, but it’s supposed to one of the best restaurants around.

House wise, we didn’t do anything major except outside and tree removal.  We did replace two windows and they look great. Next year we will replace a few more windows in the bathroom and kitchen and my daughter’s room as well. Next year, we hope to work on the kitchen and do a minor remodel( mostly the sink and counter as it is 25 years old this summer and the sink connections are pretty rusty.

So life keeps on keeping on and it really is a wonderful life.

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”.

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.

th

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.

UNADJUSTEDNONRAW_thumb_39b.jpg

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.

UNADJUSTEDNONRAW_thumb_396

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.

UNADJUSTEDNONRAW_thumb_397

Here’s the happy camper with morning coffee!!

 

 

Frugal Friday

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.