(Work In Progress)
Hit that DONATE button, to help more patients like me.
This blood cancer has been hanging around for about three years now.
Those who know me and have been following my FB posts over the last two years, understand that every day with Multiple Myeloma is a struggle for me.
Today there is no cure for this blood cancer. Research strives for a cure. Many new therapies will increase a MM patients’ life span. Every patient is different. Therapies must be tailored to each patient. I am IgA Kappa high-risk with deletion 17p.
What does it mean to have high risk multiple myeloma?
The International Myeloma Working Group has defined high-risk myeloma as having an expected overall survival of 2 years or less despite the use of novel agents. I am grateful that I have surpassed this milestone.
What is the life expectancy of high-risk multiple myeloma?
Dr. Rafael Fonseca, a renowned myeloma specialist, shared in 2019 that many of his patients were living for more than ten years with their multiple myeloma. Unfortunately, he acknowledged, those who have higher risk myeloma are only living around three to five years. (report from Aug 23, 2023)
People with multiple myeloma survive for around 10 years on average. However, the outlook is not so favorable for people with high risk multiple myeloma. Between 10–20% of people with multiple myeloma die within 2–3 years following diagnosis.
I want to live to see my oldest granddaughter graduate high school. I want to live to see my youngest grandchild graduate high school. All lofty goals.
Please help make this a reality. Be as generous as you can. Share my fundraiser.
I will be running this fundraiser through the end of July – my birthday month
06/24/2025
I am so grateful for my family and friends that have donated to this fundraising campaign.
I wasn’t sure I could reach my original goal amount, but I have, and am so pleased to have exceeded it.
Don’t stop – patients like me need more hope that research will find a cure for this cancer.
I will keep this fundraiser up here through my biological birthday month of July. Sincerely hoping that I will reach my second re-birthday month of October and many future birthdays.
06/12/2025
Successfully reached the birthday date for 2025!
Multiple Myeloma cancer is not a one size fits all treatment. There is no surgery to remove the cancer from our bodies. We have bad blood. We live with individualized treatments until they no longer work for us. Then the prescription changes until it no longer works. Along the way, we deal with horrible side effects.
Sometimes we don’t look sick. But we are. We put on a good face and go about our lives. All the while our health is compromised.
Some of us live in pain. Some do not. Multiple Myeloma looks different for each patient.
Successful patient care depends on learning more about how this blood cancer affects each patient.
That is why research is needed. Please consider giving me and patients like me, the gift of another year by donating to this fundraising campaign.
05/13/2025
This is the week for doctor’s appointments..
Went to see the ENT today. He put in an order for a CT scan of my jaw. Also sent in a script for more drugs to help heal the tissue around the decaying jaw bone.
And did I mention this is caused by the side effect of a drug that I was taking for my Multiple Myeloma Cancer?
In combination with vitamin E, Pentoxifylline it is supposed to improve blood flow to the damaged tissues in my gums around the area of Osteonecrosis of the Jaw (ONJ). Thus, promoting healing.
This one I have to take three times a day. It’s a pretty orange capsule shaped tablet.
I have to allow 72 hours after my appointment for the order to go through to the provider before I try and make an appointment for the CT scan. 
05/12/2025
It’s been six weeks since I’ve been to The Emporium. Today, I had a visit for lab work and a check in with the doc. Results come in later in the week
…continued…
I started calling the infusion zone – The Emporium – when it was clear to me, that I needed to think more positively about my MM treatment plan. I wanted to think about something pleasant while going for my infusions. I could get lost in an Emporium.
I also initially called my IV drugs, poison packs. That would not do either. If I was thinking in a positive manner, they needed a new description too. Thus, I began to call all of my infusions, in fact, all of my MM drugs, my Designer Drugs. After all, each dose was designed especially for me.
These things changed my outlook and each time I arrived for my appointment, I would get lost in The Emporium, in the art, full of nature’s inspiration, hanging on the walls, changing scenes each time I was seated.
On my treatment days, I started writing about where that art took me. Sometimes it was into an orchard, with trees full of apple blossoms, out on a boat, at the edge of the shore, or running through a field of wildflowers. I was anywhere but, in that chair, getting pumped full of drugs.
When I go for my PET/CT scans, I think about those pictures on the walls, as the device takes thousands of pictures of my tissues to evaluate my condition. Same with my bone marrow biopsies, as I drift off with the anesthesia.
Just changing the way I think about my treatments has made this part of the journey tolerable.
Even though I have had a good response to treatment, I am still not in remission. I am still not MRD- (negative) after my SCT on Oct. 04, 2023.
But I can always dream…
I have another blood draw scheduled for June 10. I have one more scheduled for July 07, with a doctor visit on that date.
So instead of every six weeks for lab work, we are back to once a month
02/10/2025
My meds have arrived. Now, I am only two days off my dosing schedule.
If Julio Hector had not spent TWO HOURS out of his workday yesterday getting to the bottleneck of shipping this maintenance drug, it would not arrive until next week.
The pharmacy was not the hold up. The issue of sending the script from doctor to a company called RXtoGO (basically a middleman) who authorizes the refill is the hang up.
RXtoGo has all sorts of excuses why it was not processed and sent to the pharmacy.
Can’t wait to see if more hoop jumping is required next refill.
01/22/2025
🩸On Thursday I go for another PET/CT scan to see if I have any more holes in my bones or fractured ribs.
We will see if there are more, or fewer lytic lesions.
🩸
To prepare for the scan, twenty-four hours prior, I cannot have anything with sugar, no fruit, no pasta, no rice, no bread, no potatoes, no yogurt, nothing starchy, no grains, no carbs.
Basically, I can have plain water, fish, chicken, tofu, natural nuts, green beans, broccoli, spinach and eggs.
I cannot wear anything with metal; zippers, snaps or buttons. No jewelry.
For twenty-four hours following the scan, I will be radioactive.
I wish my cancer was something that I could cut out and be done with.😔
09/05/2023
PET/CT Report – Skeletal System: Scattered lytic osseous lesions throughout the skeletal system.
Lytic lesions – what are they?
Holes in the bone caused by an imbalance between bone breakdown and bone formation.
In most cases, bone lesions won’t heal fully, even if the cancer goes into remission.
Overdue for another PET/CT to compare. Recommended annually.
05/23/2023
I am on a quad regimen of chemotherapy drugs. The first four are powerful drugs with many side effects. I would not normally include them in things that would or could make me well.
Chemotherapy either kills cancer cells or stops them from spreading
Commonly used multiple myeloma treatments
1) monoclonal-antibodies
Monoclonal antibodies kill cancer cells directly and help the immune system attack them
2) immunomodulatory-agents
Immunomodulatory agents can send signals to the immune system to destroy cancerous cells
3) proteasome-inhibitors
Proteasome inhibitors interfere with actions inside cancer cells that help them grow and spread
4) bone-support_med
Bone support medication such as bisphosphonates help improve bone strength and prevent loss of bone mass
Plus steroids
Steroids help decrease inflammation and swelling
This dose of steroids is oral and the most bitter tasting pills to swallow. Need to take 5, 4 MG tablets the day of chemo treatment.
It does seem to help with inflammation and swelling in the short term. One dose per week during the chemo cycle. That means two weeks on and one week off.
This is me at two years old. My older sister was eight here. Older brothers were six and four. There are three more that came after this photo.
Eileen M Hector 