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:(

WE ARE HOME!!!!

Yesterday, Barclay had the okay to leave the Kiwanis and go home!! It was very exciting. We cleaned out the RV and had most everything ready to go for after the clinic appt.

He had to have a chimeric blood test which will tell them how many cells are the donors and how many are his. We won’t know that for about 2 weeks. But that too is exciting.

When we left Sacramento it was a pleasant 80 or so.

Home is all green and bursting with flowers so it was lovely and everything in the house looked great.

UNADJUSTEDNONRAW_thumb_385.jpg Doesn’t he look great? ????

So it’s home to rest and heal.

We are back in Sacramento on Tuesday and then again on Friday. Both appts are early so we may hit morning traffic but going home should be fine.

There are still all kinds of things we need to watch out for but I’m sure we will handle whatever comes up.

All total he was gone 37 days. 26 in the hospital and 11 at the Kiwanis.  Overall, I think that’s a great record. I’ve read about transplants for people that can go 60-90 days in. So we are very lucky.

We walked this morning a little over a mile and later we will walk around the driveway a few times.

Things are going great!!

First things first, TODAY is my 14th year since diagnosis. I was standing in our driveway and Barclay took the phone call from the awful doctor. Doesn’t matter, here I am!!!!  So onward. Next week I get my labs in the middle of all this and we’ll see what my numbers do. Up or down??? I’ll deal with it one way or another.

It’s the weekend and B has no labs till Monday so we can relax. I’m heading over to Ikea as they charged me for 2 paring knives but I only bought one. I’m not sure how that will work but I’ll try. Plus I bought this darling fold out bed for our daughter to sleep on here but then discovered that the couch does fold down to a bed. Okay, Barclay figured it out I just kinda looked at it and didn’t connect the dots. Oh, well.  So I will return that(insert sad face as it’s really cute). But I don’t need it now and then at home I’d have to store it so, decision made.

It’s all going really well and so far and now it’s just waiting till we can go home. Although next week is labs one day, clinic the next and then repeat so going home isn’t too feasible.

Tomorrow both kids are coming down so we can have Fathers day here.  They are doing a great job keeping things going at home. Which, surprisingly, is a lot of work mostly due to having pets, chickens and large garden areas.

We are off for a small walk and BTW Sacramento is having a serious cool down so we are VERY comfortable…. Todays high is only going to be 84 so really nice.

Today is the DAY( I hope!!)

B is engrafted and has an immune system that looks great by the numbers. But there have been a few setbacks and the big one now is his not peeing. He’s been on Flomax for the last 2 years but during the transplant, they took him off it and that caused his lack of urinating. The problem is Flomax also lowers BP and he’s on a medication to lower BP so they didn’t want him to tank with extremely low BP.  So now they have him on his normal dose of BP and they are still cathetering him. He was supposed to be released yesterday but still not enough peeing.

It’s also crazy hot in Sacramento, well 103 probably isn’t that hot for Sacto) but it’s the first triple digits of the summer.

The cooler in the RV works fine to a point and that point is about 100 and then it’s not cool cool in here but certainly ok.  Tomorrow it looks like back in the ’90s, so not too bad.

We had the one-time deep clean lady do the house yesterday and my daughter said it looked great. Since I’m not there to do FlyLady zones this works out really well. I kinda wish I could see it though as it would give me an idea of what she might have had done differently.  Anyway, I’m pleased that I did it and will consider it again maybe in 6 months.

I’ve been walking every morning my usual 30 minutes, so that’s nice.

If B gets out today then there will be a clinic/labs appt on Thursday.  I’m still going to push to be allowed to go home though if this first week seems to go well. I just don’t see the point in being here that long when we can drive down here 2-4 days a week as necessary. But I will talk with the doctor on Thursday about it. I’m willing to stay thru next Friday at least.

I guess another option is I go home for a few days and have my daughter/son come to stay. I will look at that option after we know how he’s doing here and there are no surprises.

Well, I’m off to walk for a bit.

Life in an RV (a fifth wheel, really)

We got all set up on Wednesday in extreme heat and I felt really bad for the owner. He was sweating a lot and it was 100 at least. It did take a while to set all the things but I’m quite comfy now.

Yesterday and today and tomorrow are supposed to be red flag days in Sacramento and it is very breezy/windy. The temperature yesterday was lovely at 83 or so but by Monday we are in for 105. So very hot!!!

I’ve been going over to the hospital twice a day. It’s almost a mile so yesterday I walked over in the morning to check it out and it wasn’t a bad walk at all as long as it’s not 100 degrees. I also was very brave and figured out the shuttle back and forth. It doesn’t run on weekends so I’ll drive over to the parking garage today.  The parking is $2.00 an hour and it goes by the top of the hour. So even if I leave 15 minutes to the hour I get charged that $2.00. It’s all good though. It’s averaging about $10 a day. And Thank you, GoFundMe donations:)

So B’s numbers are all in the normal range. But he has had a few setbacks which have delayed getting released.  First, he is retaining fluid and that caused pressure on his lungs and heart. They had a cardiologist come in to check and he had an echocardiogram. Also, his blood levels of an enzyme they check for heart attacks was slightly elevated, but the doctor said that was due to the fluid around the lungs.  Also, his blood pressure was too high and they started him on another medication to help with that. It has since come down to a good range. Now the biggest problem is he is not peeing and they have had to catheterize him to get urine out. So until that gets resolved, he’s in there. It’s frustrating but it will all be good soon enough. He has one appt set for next week already at the clinic if he’s out. So fingers crossed he starts peeing!!!!

Overall, he has done amazing and this is just a small setback.  These doctors and nurses are truly amazing and anything at all they are on top of it.

My daughter came down on Friday and we went to Trader Joes and picked up groceries and it was fun to get out and see this neighborhood. The houses were stunning. These are not small bungalows but huge mansions. I still don’t know the name of the neighborhood but I’ll check.

The one nurse did say that going home earlier(from the RV) should be an option for us as we are really close enough to get here for appts 4 times a week and if there was an emergency. So I am going to talk with the nurse coordinator about that so she can talk with Dr. Abedi. I don’t want to just go home immediately but as soon as it seems things are holding steady, I will.

 

 

 

Quick update

Today the RV gets moved to the Kiwanis House Rv area. I’m excited in a way as it will reduce driving and simplify things for now.

On absolutely incredible news, Barclay is engrafting and his numbers are going up rapidly.  He still feels lousy and of course, the real fatigue is about to hit him but at least the numbers are doing what they are supposed to.

The doctor indicated he may be released as soon as this weekend which is way ahead of what I thought so that too is incredible. Then it will be clinic visits daily then it will taper off and I’m guessing his doctor will release him to come home. It’s still a long road but there is light at the end of the tunnel.

I’m trying to get everything packed up this morning including some food so I don’t need to go out later in Sacto to get something. Tomorrow I was planning to go to the Trader Joes nearby and get a few things.IMG_0636

The hat is too cover up his now bald head. His hair starting coming out right on schedule (day 10) and so it was shaved by one of the incredible nurses.

 

The week ahead…

We had a quiet Memorial Day.

My brother died in Viet Nam in 1968 so I thought about him. He was a talented artist. What a waste. He also couldn’t get a deferment even though he had a heart problem and at that time was working full time to support my mother. I guess Donald Trump got the deferment for his bone spurs. I guess he had enough millions to pay off a judge. Well, I guess that tells you something about my brother being killed in Viet Nam and  Donald Trump whining about a bone spur.

It was cloudy to start but then eventually the sun came out. We BBQ some burgers and I made some coleslaw. My daughter made us some strawberry shortcakes for dessert later.  We generally don’t eat dessert so this was a nice treat.

I didn’t drive to Sacramento and missed seeing B. But I’m going down today and all the rest of the week except Friday. I think my daughter will go on Friday unless her new job starts. Her library interview is next week and this job she is doing is only temporary thru June.

Everything is lining up for us to have the RV. I just ordered some camp chairs as I don’t want to use the owner’s ones for risk of them being stolen or damaged. We needed new ones anyway.

Flylady zone this week was the living room. That’s an easy one for me as it is almost where I want it with functionality and minimalized. I try and do one thing in each zone that’s new or improved. So this time I moved the Ikea cart out and put it in my office area. It holds our wine bottles( which have been reduced to one Chianti, that we don’t drink very often) and we kept our silverware in Ball jars there too. So, I’m going to try it and see if we NEED it back or can the space just be open( white space). I guess we shall see. Right now in my office space, it has a plant on top and that’s it so, that probably isn’t very efficient either.

I’m planning on going to Sac Co-op this morning for veggies and olives from their olive bar. But it kinda depends on my mood as I get closer. Nothing is critical that I need so we’ll see. (How’s that for being indecisive??)

Dinner is chicken enchiladas!

Saturday stuff

It has been quite the week!! We had the transplant the morning of the 23rd and it is( for those who have been thru an SCT) fairly uneventful. Even anti-climatic except it is the beginning of a new life which is pretty monumental. But it is just a drip for however many hours. Mine was very short ( an auto) B’s was almost 4 hours!!

Well, we are now on day +2 and he’s been in for 9 days. So soon he will go down to WBC of 0 and then it’s a waiting game. At this point is when you start to feel awful, no appetite, diarrhea, and absolutely NO energy. Because his is an allo, the risk of infection and graft vs host is much more present.

Today I’m going down with my son and then tomorrow I’ll take my brother if B is up for it. He said he was starting to not feel great so visitors are usually the last thing you want.

On a different note, I’m working on taking a few things out of the bedroom and closet. I have some empty bins I need to put in the laundry room and  I wanted to move a plant to a different spot. I’d like to take out the suitcase I have a plant on but I’m not sure where I’d put it. It has mementos for both of my children like wood toys and other things.

I’ll just have to look at it more closely. I thought I’d like to mount the wood crate on the wall and then that would eliminate the need for the suitcase which the wood crate is on top of.  That has a plant and a salt lamp on it.

It’s cloudy again today and cool. Tomorrow it’s suppose to rain:( again.

Day 0, this is it!!!

Well, the brothers stem cells are here and transplant will take place this morning.

It was scheduled for 2am last night but there was a delay for some reason.

But he is ready to go!! The melphalan really hasn’t kicked in yet but should by this weekend.  Also, the nurse said a fever is common when engraftment takes hold so we can expect that too.

They changed his room to a more isolated area with double entryways. But it really is a lovely room. It’s large with a table and 2 chairs, a lounge chair, and a lovely view. The windows are clean as opposed to the other room where the window was visibly dirty on the outside. UNADJUSTEDNONRAW_thumb_379.jpg

He still has his hair probably till next week when it will need to be shaved. But all in all, doing well.