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 another trip to the hospital but before I go down I will try and do my Flylady zone.
It’s the bedroom so that is generally not too involved. I did call a house cleaning service to check on a ‘deep’ clean and I’d like an estimate. If it’s reasonable I’ll schedule that for the first week of June. Since sometime after that we will be down there at the RV spot( I hope).
There’s been a hiccup with that as the owner has had a medical issue come up. I sure hope it can be resolved but it is what it is. And his health comes first. We still have the ACS hotel as back up. We can’t book that though till we know the exact date, so it’s also hurry up and wait.
On another note, my labs came back and I’m not going to lie. It upset me. They went up 4 points out of normal range. 18.4 to 22.4. So 19. 6 is high normal. And the ration went up to 1.69 out of normal range. (1.68 is high normal). so there it is. I’m guessing I’m coming out of remission. I’m not going to worry too much yet as it’s still a long way to treatment. It could be 3-4 months maybe longer but clearly, myeloma cells are activating. It’s fine really. I knew it would happen and I’ve had 3 great years. Still, with everything going on it’ll be another trial. I actually see my oncologist this coming week( yes, I know in the middle of everything else) so I can ask him. He doesn’t get too concerned as the increases have been slow.
Anyway, life goes on, one way or another.
Our air quality is much better today. But Sacramento and even San Francisco are in hazardous air quality. Also, so many people still missing and I’m afraid they probably lost their lives in the fire. Very Sad. We are updating our emergency plans and have a bin with instructions ready to go. Honestly, you just don’t know if it could happen to you so better to be prepared.
My labs came back an myKappa light chains did go up 2 points 😦 to 16.1 and my Lambda down to 12.0 and the ratio went up to 1.34. All still in the normal range so I’m not going to sweat it but still there’s a tiny part of me that wants it stay lower. But it’s ok. It’s still well below normal (kappa is 19.1 and Lambda is 26.1) so it’s all good.
Today was a gym day so I can get back to my regular schedule after being sick those 4 days. I like to go Sunday,Tuesday, Thursday. So I will go Sunday and that puts me back on track.
I went to Safeway and got most of the rest of Thanksgiving stuff. I just need cottage cheese for the nut loaf and sour cream and probably some salad stuff next week.
Monday is my big day in court for my name change. I’m not worried about it. It’s only step one of the process to get the certified birth certificate from NY. I’ll start that paper work Thanksgiving weekend.
Tonight is a homemade pizza. I’m doing one with sausage and peppers and one with mushrooms and olives.
I just love this pinecone image.
Such good news!!!!
My kappa light chains went down almost 2 points.
Lambda light chains stayed just about the same.
The ratio went down to 1.18. The ratio is a very important piece of the whole equation.
So all in all, I am beyond thrilled. This is now month 25 after stopping Velcade.
It is so amazing and I am so grateful and happy.
Time to celebrate!!!
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.