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.

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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!!

 

 

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.

The gift of LIFE…

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!

Weekend stuff

We had another big earthquake in California last night. We didn’t feel it here but some people in Sacramento did.  7.1 is a big quake. Scientists are saying there could be another within the week or at the least aftershocks.  We have an emergency kit in place and directions. Usually, up here it’s fires but who knows?

Mother Earth is not happy!!

Out weather continues to be quite lovely with yesterday being a little warm at 94 degrees.

I’ve been going out to the pool and floating and it’s been nice. My daughter has done a great job keeping the pool crystal clear as B can’t do it yet. Maybe by the end of summer, he’ll be able to take over.

Today, I’m going to the gym and then straight home. Not sure what I’ll do later. I started doing some knitting again and it’s a good meditative thing to do.

Next week we have 3 appts for B including the MRI for his leg.

The doctor is reducing one of his anti-rejection drugs so that’s like 6 fewer pills a day and a few others. He will be of the one anti-rejection drug completely next week. That’s a good thing!!

I need to meal plan for the week and I’d like to use a bunch of things from the freezer and do a clean out. I made homemade pizza last night and it was perfecto!! I did use my instant pot yesterday for hardboiled eggs. It is an easy way to make them for sure.

I’m in the kitchen zone next week, so I’ll start that Sunday as it is my biggest zone.

Simple Sunday

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.

Early morning

We need to be out by 6:30 so we can get his labs by 8:00 am in Sacramento and then clinic is at 8:30am with the NP. I think we will be out quicker this time.

  Speaking of labs my numbers came back with another increase:( So Kappa is at 25. Lambda went down to 11.3 but with that, the ratio went to 2.25. It’s still not alarming numbers and only slightly over high normal but it is a trend for sure. High normal for the ratio is 1.65 so .6 over. I’m sure my doctor is not worried at this point and I see him next week so we can talk.

Anyway, this is a good lesson for me to not obsess and just know treatment will resume at some point. I’m actually proud of myself for not being too nuts about it.  I guess that’s a good thing?

After clinic, I’m going to the gourmet store called Corti brothers. When we first moved to California in 1975, we would shop at the other Corti bros location. I had just started graduate school at Sac State and we practically lived in Sacramento. We were living in Foresthill(the same area we’re in today but not the same direction) and I was driving down 2-3 times a week. Back then there was little traffic on I-80 at night and during the morning.  Now any time of day I -80 is crazy. Anyway back to Corti Bros. So when I was at Kiwanis house and shopping over at Save Mart, I looked over and saw the sign for Corti Bros.  I wasn’t planning to go in till the person who owns the RV said ‘Hey, you should go into Corti Bros. ” So I did and first, the deli is amazing and I discovered they have the French ham I have always wanted to try. Of course, I thought I’d have to go to France but no, here it was. It was amazing. Since I do love cooking and food, it’s a fun store to look around in. Today, I’m getting some olives from their amazing olive bar and some special burger blend for 4th of July.

All in all, it should be a good day!

 

Back to routines…

It finally feels like things are getting back to some semblance of normal.

It has been busy to some degree and yesterday was a very long clinic visit with the doctor. There are a few things needing attention. His blood pressure is still low and seems to drop when he stands. The doctor thinks this is the Flomax, but since he needs that to get the peeing going the dose cant be lowered yet. So he needs to be extra careful getting up.  Then he has a ‘drop foot’ happening in his right foot where it’s kinda lagging. This just started a few days ago. The doctor ordered an MRI asap, but that still is 2 weeks out. It may be a nerve or it may be a rare side effect of the anti-rejection drug, so it needs to be figured out.  Well, no one said this would be easy.  But overall, it’s all going better than expected.

Today, though, I’m going to do Flylady zone which is the living room. Always an easy zone for me but I may do it a bit deeper especially after the deep cleaning we got from the cleaning lady.  Yesterday, I moved all my cookbooks into the LR bookcase as I want o see them together and what doesn’t fit I’ll get rid of. I’m also going to wash the couch covers. I’m guesstimating that I do this about 4 times a year. Since we just had the summer solstice that’s a good time.

I’m also going into the closet pantry and do some tidying up in there. It doesn’t need a lot but some stuff does need to be re-organized.

I’m not going into the gym or town at all today. But tomorrow I will go to Costco as coffee is needed and some other basic things. I’ll go early so as to be home just after my daughter leaves for her job. Someone is supposed to be with B 24/7 but an hour won’t be too bad.

I’m also putting a piece of pork in the slow cooker for pulled pork. I have some corn and I may do a small potato salad. Not sure if I have enough potatoes though.

We just had a nice one-mile walk.  Don’t want to do too much yet. The park has been really busy even at 6am. I grumble about it:(