As 2019 comes to a close

Posted in Bone marrow transplant, budgets, GoFundME, husband, social security, travel, Uncategorized by Chris N

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.

16Dec2019

Things to think about for 2020

Posted in budgeting, budgets, Flylady, GoFundME, home improvement, home stuff, social security, Uncategorized by Chris N

I don’t do goals so much anymore and I try to avoid putting myself in the position of expectation on myself. I do like lists of things that I would like to do or things that need to be done.

I like Flylady as it gives me a focus on weekly chores. And I like grocery lists and menus. I also like budgeting and do that daily and weekly and monthly. I also have annual bills tallied. ( This might be the challenging area once were on SS solely).

Now that SDI is ending money will be different. I have saved as much as I felt I could but there were some big expenses in 2019. We had over $6000 in medical bills. The trees were almost $5000. Plus travel and other expenses during B’s transplant. We were very blessed to have the GoFundMe account which covered Kiwanis’ house for 3 weeks and other expenses.

Overall, financially, 2019 was good. We didn’t rack up any CC debt related to medical bills or anything related to the transplant. I used CC to pay things but was able to pay in a timely manner.

In 2020 we will need to be ultra frugal as there won’t be bonuses, or extra money coming in. Honestly, I ‘m not sure how it will play out but it will one way or the other.

We’d still like to take down the big tree in the back of the house and that will be upwards of $5,000 as it will need a big crane. the other big thing will be, do we want to redo the bathroom so it is ‘age ‘friendly. We plan on staying here so a walk-in shower seems prudent.

I’m also figuring that I’ll be starting Velcade sometime in the next 6 months so that’s weekly trips to Sacramento. Lots to think about.

2Aug2019

Frugal Friday

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

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.

10May2019

Friday things

Posted in Bone marrow transplant, GoFundME, Uncategorized by Chris N

So we are ready to go. B signed the consent forms yesterday and admission is next Friday. That’s only one week away. After listening for 45 minutes of every terrible thing that could go wrong we signed.

He will go in at 9am admissions, have a main line put in or a pic line. At this point, it looks like a pic line since his platelets still have not gone over 50. They hover in the ’20s and then drop into the low teens and that is too low for surgery for the mainline catheter.

Then Friday is D -5 for chemo, down to Day 0 which is transplant. The chemo is supposed to be well tolerated but since I had melphalan I’m not too sure I agree with that. There are two other chemos involved as well.

So, it begins. Probably the recovery will be the worst part with fatigue and the constant threat of graft vs host disease.

We stopped in the co-op for a quick shop and it was slightly more expensive than I’m used to I may have to use it to buy the things that are better priced such as bulk items. We did have a lovely lunch though and got to relax before heading over to UCD med center.

We got in another co-pay bill for $1680 that’s for all his transfusions. I’ll call this morning to make arrangements for payments. We paid off one and so with this one we’ll have two. All together that will use @ $4500 of the GFM but I’m stretching it out. Actually, I think it’s more like $5000 but still, over time it’s doable. ( As long as too much more doesn’t show up.) But we still have the transplant co-pay which is still unknown but we know it’s about $6000.

Well, I’m just not going to worry about it now.

Today, I’m off to get my labs for my Thyroid as I’m overdue. Then to pick up my new glasses that hopefully have been corrected. From there I may hit the gym and I need to go to the bank. Yesterday was super long and so I usually drag the next day.

I’m hoping to not go anywhere tomorrow or Sunday and I’m willing to give up my Sunday workout just to stay home. I’ll be driving to Sacramento almost every day starting next week.

This our Cecil Brunner rose all out for Mothers day!!