Four Years From Diagnosis With Multiple Myeloma

It has been one year since I updated you on my very personal journey with Multiple Myeloma. A year that has continued to show me that consistent effort goes a long way in producing success. For me, that success is seen in my blood results being stable and my bones maintaining. In this year, there has only been one more lesion detected on my T8 vertebra. This is a success because the year before that (2020) I had two compress fractures which affected my walking and my lifting of anything heavier than 1kg.

At the beginning of 2021, The oncologist told me that I was playing with my life by not agreeing to have chemotherapy followed by a bone marrow transplant. Other than that my heart and gut were telling me that that was not the route for me, my reading of scientific papers confirmed that because my MM presented itself in my bones, the chemo and marrow transplant would weaken my bones even further, before they had a chance to build up my immune system again. The other factor which has played a major role in my decision is the projected cost of going that route…It was estimated (August 2020) that it would cost in the region of R500 000. From a practical, financial point of view, this would have cost me more than I am able to afford. And…There is no guarantee that it will work…Most people have to have regular bone marrow transplants.

Knowing that from every viewpoint this did not make sense for my circumstances, my choice to bring lifestyle choices into my treatment was done knowing that I had looked at all options available to me at the time.

My decision to request monthly bone strengthening drips was also done with full knowledge of what it could do. I know that it is like filling up my crumbling bones with Polyfilla and not actually healing the bone or bone marrow. And yet, for the past 17 months, it has been helping to ensure that there are no more broken bones.

What have I been doing since my last break to support my healing journey?

It started off with monthly drips, but now, it is every 2nd month. Before I visit the oncologist, blood tests need to be done to keep an eye on my blood count, M-Protein band marker, as well as blood calcium levels, kidney and liver functions. The attached cumulative blood results show what has been tested, as well as the numbers over the months.

If you are interested and think you will find it helpful, please screengrab the picture and enlarge it. If you are not able to view it, please message me via WhatsApp (+27844590072) and I will send it to you.

Supplements

These have basically remained the same, with a few exceptions: (Please note that none of these labels sponsor me/us. They are just what I am using at this time)

  1. Honey oil: 4g pure BHO in a syringe (actually, he does sponsor me in that gives me a discount and in return, I pass his name on to people who need a good quality oil)
  2. Bio-Strath tablets (Nutritional supplement)
  3. Slow Mag (Magnesium to help absorb calcium from food)
  4. Omega 3 (Wild Alaskan)
  5. Zinc/Selenium/Vitamin C (1000mg)/Vitamin D3 (1000iu)
  6. Bio-Curcumin
  7. Lycopene
  8. Tissue salts 1, 2, 3, 4 and 8

Herbal extracts in the form of Tinctures

  1. Astragalus (Immune strengthener)
  2. Ginkgo Biloba (Blood thinner and brain booster)
  3. Ashwagandha (Adaptogen: helping with anxiety)
  4. Sutherlandia (Full body tonic)

Pharmaceuticals

  1. Lyrica (Nerve pain)
  2. Stilpayne (Bone pain)
  3. Prednisone-3 weeks every 6 to 12 months (Improve appetite and give some mobility to my left arm)

Food

  1. I have added gluten-free pasta, bread and crackers. This is to help improve my weight.
  2. Lots of vegetables and certain fruits
  3. Protein (including beans)

People

There is no way that I could do this alone. My network of family and friends grows all the time.

  1. Those who help me by sponsoring the supplements.
  2. Giving me lifts to the oncologist for my bone drip.
  3. The friends who give up their time to spend time with me.
  4. The therapists who help my scrambled, anxiety-ridden brain.
  5. My business partners (past and present), who give me leeway when I need to lie down or need a time out.

Gratitude and Joy

  1. Being reminded every day how good it is to be alive.
  2. In the past 2 years, I have become a grandmother twice over. Two beautiful grandsons who I can appreciate and love fully.
  3. A home to live in and work from.
  4. Family and friends.

Thank you for following this journey with me. Every day is an opportunity to live life more fully and love people more completely.

Lots of love, until next time

Sue

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