It was June 15, 2005, that I got the ‘official’ diagnosis over the phone. We knew, really before that, but it had to be official. The bone biopsy was done by a neurologist surgeon since it was on the spine. It was a pretty horrid experience. I didn’t feel anything but was conscious and I could feel the pressure. Well, anyway, 13 years ago and here I am doing pretty great( apart from the stress fracture in my foot) which is doing better in the boot thing.
Time gives one perspective on most things, and this is no different. I’m older, wiser, more informed than I was then. As I’ve said before, I didn’t really want to know much except what do we do now. It was later that I started getting all the info I could. Still, even the Myeloma Beacon didn’t come into being till 2009 maybe??? I learned so much from other Myeloma people and their experiences. Sadly, many of them are no longer here with us.
Life moves on no matter what. Death, sickness, political craziness(hopefully)will all change and move on to something else. It’s as it should be. It doesn’t make it easier or the pain any less, just different.
So, I lift a glass of sparkly and toast to me!!
Having survived now for 13 years with Mulitple Myeloma, I know how lucky I am. I am grateful every day for my life with my wonderful husband and children. My son was almost 11 when I was diagnosed and my daughter almost 20. So the many years I’ve had are remarkable. Graduations from High School and college.
Some people using the bullet journal method write down what they are grateful for each day. Some do it a little OCed. I don’t need to write it down to be reminded that the sun comes up or it’s raining and I’m fortunate enough to see it and experience.
Especially since I am enjoying this remission period. My next labs are coming up in the first part of April. Who knows what they will bring but I can only hope they are still good. Although, I don’t “hope hope” like in praying or anything. Because your blood will be what it is no matter what you hope for. It is what it is. That was a hard lesson for me when I was first diagnosed. It took many years to realize basically nothing I ‘hoped’ for essentially made a difference but still one needs to hope. I think it’s a human element.
My neighbor that I’ve mentioned before in my ‘Death decluttering’ blog, is with hospice now. She only has a small amount of time left. I talked with her the other day. One thing that struck me was she said,” this wasn’t how she envisioned her retirement”. She’s only 2 years older than me and was diagnosed with stage 4 ovarian cancer 5 years ago. She made it longer than a lot of cancer patients.
I’m one of the lucky ones and believe me, I am extraordinarily grateful. Not in any religious sense, just grateful to have lived to see another day.
It was a rainy day Feb 28, 2006, when I was admitted to Sutter Memorial Hospital Bone Marrow Transplant unit. It was a small unit of only 6 rooms. Each patient is in isolation because of having little to no immune system working. Every day, a cleaner came in and did the entire room top to bottom. The nurses were the kindest and very experienced in their field. It takes a special person to be that nurse.
I can’t exactly remember but I think I was given the Melphalan that day, and then the stem cells are given either the next day or the day after. It’s the Melphalan that does you in as it kills everything along with the hope it’s killing the cancer cells. Then it’s the stem cells that actually rebuild your immune system and white blood cells. But first, you go thru white blood count dropping to close to zero, plasma transfusions as your red blood count is so low, horrible diarrhea, and on and on.
12 years ago today. I’m one of the lucky ones as my SCT did work and I had 4 years of remission.
But it was singularly the worst experience of my life. Yet, I’m grateful for the medicine, my doctors and transplant specialist, nurses and of course my family. They got me through.
So Happy New birthday to me.
Minimalism is different for everyone. some people want 100 items, others just a clear, uncluttered space.
As I’ve written before, my minimalist journey started after I relapsed the first time in 2010. I had been drug-free for 4 years(2006). Then when my myeloma started surfacing I went on a chemo drug called Revlimid. In addition to Dexamethasone.
But, I digress, starting chemo again was scary but something shifted in me. I didn’t want clutter around me or useless stuff or really come to think about it. any stuff that seemed useless or just filling up spaces.
Thus started my whole minimalist journey. Not to get to 100 things but to really have our home feel spacious. Since our house is very small, I got rid of extra couches, chairs, piano, bookcases, tables and thousands of things to open up space.
I can still see down the road having a smaller dining table, maybe a few less bulky items. maybe even getting rid of a Heywood. Well, that might be a stretch but still, it’s openness I desire and white space to enjoy with green houseplants scattered around.
Right now I’m playing around with the Minimalists rule of 90/90. Have I used this in the last 90 days? will I use this in the next 90 days? This helps simplify the ‘hanging on to stuff for the what if ‘factor. It’s actually quite powerful when you look at a bookcase for instance. I have some cookbooks I like the covers of and the pictures are nice. But have I made a recipe out of them in the last 90 days, well no? My go-to for recipes is Kichtn on line or just doing a Google search. So I will remove those 3 books I’m looking at.
We aren’t going to be able to change our house structure or build an addition. This is what we have to work with and so I want to find that balance of useful things and space.
‘Space, the final frontier.’
It’s okay. But here’s a picture of the results.
So if you have Myeloma, two tests are important to track your cancer. These are the light chains and the SPEP.
So in August, 2 months ago I was at 13.6 . and lambda at 12.0 ratio 1.13.
I was very happy with those numbers.
In October the jump was almost 3 points. to 16.2 and 14.2 but the ratio was 1.14 so almost no change which is quite important. The ratio is actually more important the individual numbers. Sorta of…
Well, it’s ALL STILL WITHIN THE NORMAL RANGE, that;s themes positive thing but a 3 point leap in 2 months and then what in another 2 months?
It’s possible the myeloma cells are on the move so to speak.
Gratefully my Serum Electrophoresis is normal.
naturally, I’ve been obsessing some and it takes me a few days to rationalize it all. It is all normal still and all good.
Just to put it in perspective, even when I go out of the normal range, treatment doesn’t really start right away. It’s more like when you hit @ 100 or so. or the ratio becomes squewed. I’m Okay! I feel good. So onward.
I’ll be writing another blog later on just normal stuff.
Not too busy of a day. I’m going to the gym and then home.
I’m going to the gym and then home. My daughter needs to pick up some pet medicine at the vet, so I’ll drive over there.
My sister will be flying out this weekend with her oldest to visit. Her oldest child is doing a Catholic mission thing in Sacramento. So they are here to visit her and we will meet up Sunday for a visit and then go out for dinner. The turn around is 4 days. Geez, I couldn’t do that, I’d be wiped out.
Anyway, had my labs yesterday and my CMP( comprehensive metabolic panel) is all normal. I’ll probably get the CBC today and then the big tests should come in Thursday or so. We’ll see……waiting anxiously as always.
Honestly, I don’t think it ever goes away, the anxiety. Having been thru the hell of a cancer diagnosis that was really out of blue plus how many people have heard of multiple myeloma? Well, I certainly hadn’t. But time is a wonderful healer and I am much more philosophical about it now. But that’s in part due to being 12 years out from diagnosis.
Here’s some of my vintage Halloween decorations.
I actually didn’t put everything out this year. So more minimal.
Tonight is Taco Tuesday.
So I saw my oncologist this morning and all is right in my world. He always listens and has been a knowledgeable medical oncologist/hematologist. Since I had already gotten my labs back and they were all great, it was just a relaxed visit to check in and set up the next followup. I am so very grateful to be enjoying and living every day to the fullest.
Today, I’m just doing some puttering chores. I need to load up some thrift store things to take tomorrow. I have 1x load of laundry and just tidy and putter around. I may go out the garden and pick tomatoes as we are still getting plenty.
Here’s a picture of the peach pie I made the other day.
OMG, it was divine. But I think it was because the peaches were so divine. But I made the crust using Julia Child’s recipe minus the shortening. I just did all butter.