Tag Archives: Myeloma

3 days left of JKWP, lesson limitations

Posted in Uncategorized by

So, three days and counting. We are up and out by 5;40 am but sunrise is 5:43, so we need to go a tad bit earlier. Everyone else(the regulars) are also out earlier. I’m thinking 5:30. I think thats what we were doing last year.

So, lesson 3 is about limitations. I’ve learned that its tough to admit that I have limitations physically. I was always fairly athletic when I was younger. In college and later I did ballet, then about the time Forrest Gump came along(that’s a joke), in the mid 70’s i was running. Actually running a lot. About 5 miles a day. We lived pretty rural and the paths were nice. Later, I didn’t run any more, because the roads where we moved were dangerous. At some point I started swimming. Again a lot. A mile or 52 laps a day.

Then a strange thing happened. I had a compression fracture T 10 due to myeloma. Except I didn’t know that for a year and a half afterwards. What I did know, is I was limited. I couldn’t do anything. Slowly it got better till then when I found out why I had the compression fracture, it got worse. So, I can only still walk so far without my back hurting.

Now I’ve been on dex so long that even though I walk everyday my leg muscles never seem to get stronger. I think normally, I’d be, let’s do more. Walk more laps. But I can’t, I’m limited. Don’t get me wrong, I am grateful every single day for what I can do and that Im still here living life.

Catching up!

Posted in Uncategorized by

March is over and April begins. We are having very nice weather but no rain. Things are very dry here in northern california. All around our house is rototilled so now it looks like a dust bowl. Well, I hope we can get something planted soon. The garden area( my daughters realm ) looks good though and we are enjoying lettuce,radishes, fresh herbs. Next should be some snow peas.

Z, my son, is at the Grand Canyon and leaving today. He’ll get as far as Bakersfield @ 8 hours and we bought him a hotel night so tomorrow will be a 5 hour drive home. Hopefully very safely with no tickets. It seems it’s been a good trip with his friends and they’ve been very busy doing stuff. I miss seeing him though.

My daughters official first day of work was yesterday and it’s great she loves the library and everyone is super nice. Yeah for her. I’m so proud of her and this is a big break for her to get in a permenant position.

she loves her new to her Honda so I’m glad. I’m still undecided about the vw, but I’m driving it and it’s fun.

Nothing new with myeloma and I’ll have my blood tests this week and next week doctor visit. I feel ok, nothing new. I have a few days left of revlimid,and then off for the week. It’ll actually be longer since he didn’t call the prescription in till he sees my blood work. I think that’s wise as I don’t want a bottle of $10,000 medicine going to waste.

We went and bought the simply white paint so we’re ready for the next paintathon. I’ll have B start with the ceiling and go from there

After work I’m going to drop a good will load off. It’s not a lot but I want to get it out of my car.

Off to the library today. It’s spring break so I suspect it’ll be slow. Last week I completely forgot about bookclub. I think cause I’m not into it anymore I just didn’t prioritize it. She’s too structured in the group and I’m not enjoying just answering questions from bookclub questions on line. The people are great though.

Well, off for the day!

February , update on January no / low spend.

Posted in Uncategorized by

image

So, its February. It’s clear and cold out. That’s around 29 this am when went walking but should get into the 50’s.

We ended up with 15 no spend days ,so that was very good. It really helped us see our spending habits, of often running down to the market for a few things and ending up with a lot more.

My zero balance is kinda a disaster, with only $500 left. Not good , but we did have extra bills, car tags, $100, my son lost his cell phone, $200, property taxes almost $1000. So those came from the zero balance and sinking funds.

I am still savings the extra $200 in another savings, and Santa fund is $50 every two weeks. So good on that front. Plus I added to the $5 savings and 52 week challenge which I’m ahead on. So I think it’s kinda a draw. Save, spend !

February I’d like to have 15 no spend days, and nothing too extra. I need to get propane and that’s going to at least $300.

I had a good oncologist appointment, and the great news is my m protein went to .36   That is very good news for me. I’m on my 7 month of revlimid . I guess I’m not really going off anytime soon or ever really. Until I switch to something else. It’s okay, it’s life with myeloma. I’m so lucky I tolerate it well and it seems to be be helping. I did start back on curcumin and added those mushrooms( a dried combination called Matrix) I do think it’s doing something.

Walking is at day 247, so I’ve passed the 8 month mark of walking every day!

off to work and then tonight ,as a family were going to see the Irish rovers!  I hardly ever go out at night and never concerts as I don’t like crowds, but this is small and should be fun.

M spike!

Posted in Uncategorized by

Well, still not the news I was hoping for. Back to .6

so, one can surmise 2 things, one the revlimid isn’t working anymore, or it’s holding everything in place but not dropping my numbers.

This is cycle 5, I’ll know if it creeps up even a .01 that it’s not working or if it stays the same at least it’s not going up. So far this is how it looks:

start

.6

.4(good)

.5 ok

.5 ok but?

.6 not good

so, we shall wait and see.:(

in the big picture, this is a small monoclonial  protein. But, it doesn’t matter as it still for me shows that the myeloma cells are active.

Ill try and just be positive, I feel good and it is what it is.

Happy birthday to me!

Posted in Uncategorized by

imageWell, here I am, 61 today. It’s weird to say that, as I’m sure most everyone goes wow I still feel 35 inside. Or 25 or whatever.

I’ve enjoyed getting older. I like where I am. Of course there are things I wished I’d did differently, but hindsight is 20/20.

Im grateful to be here and feel good. When I was diagnosed it seemed so depressing and scarey. Now, I’m use to dealing with multiple myeloma. It’s never easy but I cope.

Today was my 122 day walking and it was sprinkling. But it was still nice.

No special dinner plans, but I did go out to the store and pick up some mini desserts. So well see what shapes up for dinner.

It’s been a great life and I’m grateful for the time that is been given to me.

Our studio

Posted in Uncategorized by

ImageSo, here’s our studio. It was my school room for homeschooling till z got into high school. Plus, everyone uses it for something. My husband plays guitar here, my daughter plays her electric piano. And I read out here. Since our house is small it’s been one of the best things we ever did. So new colors. I want the main house a way darker green but this worked out. My daughter is painting the inside. She is starting her MLS on line graduate school  so we’re putting out the Heywood Wakefield desk for her to work on. I’m going to move our Heywood Wakefield dining table in our bed room as a desk. I was going to sell it as it wobbles unless it is against a wall, so now I will repurpose it. It’s actually nifty as it folds down (with the leaves out ) quite small. So a win win. Now I can explore buying a farm type table. 

On another note, I’m 100% sure I didn’t have shingles but a chlorine burn from the pool. My husband has sprinkled shock that morning and he thinks it landed on my floatie. I think I overreacted, but it certainly was burning and itching. So I stopped the acyclovir. If I need it again, I’ll have some on hand.  I’m still waiting to hear from Curascript . Not sure what’s up there. If I don’t hear by Wednesday I’ll call the nurse.  Also, I had faxed my insurance reimbursement to LLS, midmonth. Well I called today and they never recieved it so I went to town and refaxed it. So somewhere in cyber space is my LLS forms. Next time I’ll just mail them like I usually do.  I appreciate that I can get that grant and help monetarily. 

Beautiful weather and maybe shingles , AGAIN!

Posted in Uncategorized by

First, I don’t know for sure it’s shingles. But I’m not waiting 3 days to find out. Yesterday in the afternoon I was floating peacefully in the pool, and my upper black started to itch. Ok, bug bite? So, I get out and think well, it’s still burning some. Then by 6 pm , I’m going this is too weird, my skin on my upper back is burning and itching. Hmmmm , my daughter gets home and I ask her to look at my back, she says it looks like a rash, in quarter sizes. No evidence of a bug bite. I take a few Advil ( I know we’re not suppose to with myeloma, but sometimes..so by 9 pm I’m in PAIN! What the ##~~¥¥¥+***! Now I’m trying not to freak, because when I had shingles on my arm last spring, I didn’t even know what they looked like. So , long story short, I called Dr. L right away this am, said I’m not sure but….. So the nurse called back and said, start valacyclovir . 

Even if its not shingles I don’t care, I just don’t want to risk it. It’s 12 noon and its still burning and itching so who knows? Allergic reaction? 

 

On another note I asked her while she was on the phone about the revlimid and that I hadn’t heard from Curascript. Good thing because she said she called it in on the 24th. So she was going to follow on with a call to them. Not that I’m rushing to start but, I might as well man up to it. Or woman up to it. But at the pharmacy I loaded up on immodium , and Benadryl , as last time both were needed. 

I’m going to to another blog today on The William Morris project from Pancakesandfrenchfries website. Check back.

July mini goals

Posted in Uncategorized by

imageHopefully we’ll be back on track with the budget. We had to B’ s tires to the tune of $584, and his car service at$393. But that’s done and was part of what we budgeted his bonus for. We also had to propane at $300. So, the bonus covered those things but not too much savings. We managed $50 to Santa fund which is good because you can’t touch it.

I think it’s just being realistic with what we can do. There’s only so much money and so many bills. We have everything to basics so there’s not  much to trim. I will ask Z to pay his cell phone$40, now that he’s working. S will need to start paying once she gets a pay check again.

So mini goals financial and otherwise :

  • Keep walking everyday, (I’m on day 36)
  • Put another$50 in Santa
  • Pay another $100 to the dentist, almost done!
  • Put $300 in sinking funds
  • Send off my LLS form for insurance refund. This is the fantastic leukemia and lymphoma society grant program. It is a wonderful organization, I get my portion of my husbands insurance paid by them.
  • Go to a museum with B
  • go to a new restaurant with B
  • Camping in Tahoe for 2 nights to make up for the rained out trip. I think it’s just going to end up the 2 of us, as both S and Z have work.
  • Be emotionally prepared to have to go back on chemo drugs. I get my zometa infusion this month( a bone strengthener that all myeloma patients do). Also, after my blood tests I’ve decided if it goes up even .01 I will tell him in August we’ll start. I think it helps to write this as a goal, as less of an impact when it happens.
  • Keep doing menus.
  • cook some batch cooking for freezer( this has been great)!
  • Be okay with budget being less than what I hoped it would be, in other words, I thought we’d have saved more money 😦

so, that’s it for now !

Hot, very hot!

Posted in Uncategorized by

It is so hot herein Northern California . On my drive home from the library, my car registered 102. That’s hot. In our small house we have 2 window air conditioners. Yes, I use them when it’s this hot. We do turn them off at night though. This is suppose to continue till Friday. Ugh! I do not do well in hot weather.

On a happier note, yesterday was my day 30 of walking everyday. I’m starting today to do month two. My motto has been just walk. So if I did one round in the park(.5) or 3 I did it. So I’m very excited.

Haven’t worked out the budget yet, but B’s tires were a whopping $584. So $84 over budget.

I’ll work on posting goals and budget tomorrow.

On another note, one of the myeloma specialists on the myeloma beacon responded to my question of should I start back on drugs. Basically he said since it is a trend he would be leaning going back on. So, I’ve decided that if my numbers go up again, I will ask to go back on revlimid and dex in August. I just think waiting is not an option if it goes up again. It’s harder to get numbers to go down if they’re going up. 😦

Budget updates

Posted in Uncategorized by

It seems we are off budget, but we’ve had some I unexpected costs, primarily vet bills and a lot of special cat food for Tucker. That was $186 and $56. Plus out of our sinking funds, Costco membership, and AAA membership. So our one sinking fund is down below $1000. That’s part of my zero balance. Hopefully it will get replenished when B’s bonus comes in at the end of June. I’d really like to add at least another $1000.

Z will have books to buy in August for college. And his birthday is August so there’s always more expenses.

we have gotten a place to bring the tent trailer in Tahoe in June. Our favorite place Nevada beach is totally booked solid. I just do t think of it soon enough and then there gone. I’ll keep checking for cancelations which does happen.

I wish the font would stay and not click off.  So the budget will be a little tight for the first of June . Most of our big bills, mortgage ,car payments etc are due then. But we only have a handful of Prius payments left which is a good thing because the #%^**** student loans will kick in. I’m still waiting to see the final result with mine being in a total and permanent discharge. It’ll be just B’s but we don’t know what yet.