Thursday, August 29, 2019
I cannot believe it's the end of August, and I almost forgot to post today, which is so unlike me . I also can't believe how time has slipped by so fast and I never updated my past post... but yet again,, if I had shared everything that has gone on before and since my last post... you'd get why I wasn't able to finish that post, or even write my update now.
And even trying to do this now, I have a blazing headache, and I'm more exhausted than I've been in forever, still slightly nauseated from Monday's Dex, Velcade, Cytoxan, and I still have to postpone a detailed update because I'm so exhausted from all the fast track insanity that's gone on in my life in the last month!
Well that quote is not entirely true, lol, but close. Actually, I'm too actively involved in my life, because so much is going on! There are times I just need to stop and "just be a cancer patient", but my life doesn't give me that chance!
So here's the headlines of what I wanted to write about, and may eventually be able to!
1- Earlier this month, I actually took the risk and flew to Hawaii for my son's surprise Engagement. What convinced me to go, was his heartfelt comment... "Mom, you're the "only" parent "left"...
2- I don't fly because of my terribly compromised immune system, so this was a HUGE RISK FOR ME
3- This was an Epic Surprise for his girlfriend/fiancee as both her parents have passed..., truly a once in a lifetime event to do this... so I mustered my fears and cautions and went... and so far... knock on wood as they say,... I'm still ok. Don't feel great, but I don't think I'm sick. Just exhausted and "chemo crash sick"
4- Prior to that, and I really hadn't shared with anyone, local, personal, or public... we moved my husband to a Memory Care facility
5- I picked "The Best", 5 star place for him, we moved him in mid July, and it's been the craziest adventure ever since
6- I visited him almost every day, except on my worst chemo crash days
7- Visiting him every day sure gave me a deep insight into those suffering, and I mean SUFFERING from Alzheimer's, Dementia, etc
6- I actually began to feel like a "resident" myself,... super weird, sad, awful, experience
7- Lived with "illness" on so many levels, every day
8- Really felt the difference between what it means to BATTLE Cancer vs SUFFER from a Brain Disease
9- As I've mentioned before, as awful as Cancer is, I'll take it over a Brain Disease
10- Moved my husband OUT of this Memory Care place this past Friday night
11- Hired caregivers at home for 7 days, 12 hour shifts
12- I'm so beat up mentally and physically, I can't even begin to describe all the detail...
13- But as always, I remain so very grateful on so many levels...
14- Soon I will catch up, and really share all this insanity with all of you... if you want to hear the full stories...
Monday, August 19, 2019
I have a BIG story for you :))
Friday, August 9, 2019
Had my monthly Dr appointment today via phone. I've done this several times now, and it sure beats fighting crazy traffic on the ridiculous LA freeways! I'm happy to report this means good news for my Myeloma status, which I am incredulous about, especially with all the stress, lack of sleep, extreme emotions, etc, related to my husband's medical decline...
My Dr released my labs online, and I will post all my important Myeloma labs
All the doggies try to steal his meals.
It's crazy how they love this lettuce now,
Probably because they think he's getting
a treat, they're not!!
800mg Cytoxan, Cyclophosphamide
every Monday to infinity!
but that's ok
But that's the price I pay for all this
crazy treatment, that, thank goodness
Amazing, with all these powerful meds,
and amount of myeloma circulating around for almost
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells
July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!
And you can read my whole story from that point forward in this blog!
What is multiple myeloma?
Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?
Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.
The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.
When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.
When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.
Multiple myeloma is characterized by several features, including:
Low blood counts
In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.
Bone and calcium problems
Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)
Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.