I had an article published in 2017 by AAMDSIF and was asked to update everyone. I will briefly reiterate the first part of my journey and then move forward!
I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive oncologist, who told me that I had this disease and the average life span for this type was 104 months. I had not even asked how long I would live. She was devoid of emotion and nasty. The room spun wildly as I grasped my friend’s hand. I couldn’t even pronounce this cancer much less spell it. Since I have a Ph.D. in counseling and had to share bad news with several clients over my 18 years, I found this bedside manner reprehensible. I asked around and switched to another wonderful doctor. Dr. Trehan is at Aultman Cancer Center and is compassionate, smart, and one of the most fantastic people I know! I could never have gotten through this journey without her.
One of the most difficult aspects of this type of cancer is the rarity. I personally don’t know anyone with my type, but through my website, janeandsita.com, and social media I have heard from people all over the world.
Just to put the numbers into perceptive, only 10,000 cases are diagnosed each year in the U.S. I am not sure this is accurate, because the only way to definitively diagnose MDS is through a bone marrow biopsy. This is an invasive and expensive test, which makes doctors hesitant to order. However, it is rare. My unique type of del5Q is only 10% of this total number. It is also unusual to have this as a woman and be as young as me. I was not even 60 years old and most people are older. I learned early on that we are all on our unique journey. I think one of the hardest things about being diagnosed with a blood disorder is knowing it is treatable in some cases, but generally is not curable. It is unlike other cancers such as certain types of breast cancer, where survivors are encouraged to “ring the bell” when they finish their chemo. We never get the ring the bell because the only cure is a bone marrow transplant, and not everyone is eligible.
To compare some numbers, BreastCancer.org estimates 276,480 new cases in 2020 will be diagnosed for women of invasive breast cancer, along with 48,530 non-invasive (in situ) cases. Another 2,620 new cases of invasive breast cancer are expected to be discovered in men. It makes sense that a lot more attention is given to the more common types of cancer along with lots of fundraising and sheer numbers drive that. However, blood cancers are getting recognized more, and agencies like the Aplastic Anemia and Myelodysplastic Syndromes Foundation (AAMDSIF) and Myelodysplastic Foundation (MDSF) are wonderful places to go for information.
Locally, one of the problems I have experienced is there is no Nurse Navigator assigned to me, because this condition is so rare at the hospital where I get treatments. They are available for other cancers such as breast, lung, colon, and more common cancers. I could have used one several times.
I have been very fortunate because the type of MDS I have is the longest lasting and I appreciate that. I did say to a specialist at the Cleveland Clinic that I knew this was a good cancer to have and he answered, “No cancer is good.” As soon as I said it, I realized how wrong I was and concurred with him. There is no good cancer and it all needs to be eradicated.
The tough part for me is when people ask me when my treatments will be over and I sadly say “never.” Knowing we will have this all of our lives is similar to people who have MS, Parkinson’s, and other autoimmune disorders, so we must treat it as a chronic disease.
I started my treatment regimen with Revlimid. I was very naïve thinking since this was oral; I wouldn’t have the terrible side effects one experiences with an infusion or other invasive chemo. Maybe it was not as severe, but it was not without problems. I suffered chronic and unrelenting diarrhea. The fatigue was the worst I ever experienced. I have always been busy with full and part-time jobs and going to school, but if I was tired I could push through. Not now. I would be stopped in my tracks and have to go to take a nap immediately.
When I first found out about the cancer, I was working two part-time jobs, one as a counselor in a private practice and the other teaching as an adjunct faculty at a nearby community college. I quit the counseling position shortly after the diagnosis due to fatigue, but continued to teach for several more years.
After six years on the Revlimid, my blast count started to increase, and the doctor feared I was going into leukemia. She prescribed Vidaza shots and I had to go in 5 days every month for these painful shots in the stomach. These did prevent me from going into dreaded leukemia, but after two years my stomach swelled so badly I had a rebound effect and was forced to stop.
During this time, I was forced to retire from my teaching job. I sobbed and sobbed because I loved teaching and had received several awards, but could not do it. I was getting exposed to many sick students and my immune system was compromised. However, I went into writing and had three books published, two on my wonderful service dog. One is a picture book called Here to Bump and Bump to Hear and the second one is a devotional named Paw Prints on my Soul – Lessons from a Service Dog. I also wrote another book on my cancer journey titled Life is short – Eat the Donut. They are all on my website janeandsita.com and available on Amazon. I am presently writing another book on my experiences of growing up deaf. I have written many articles ranging from devotions to hearing loss to my cancer journey. Writing is something I can do on cancer time if I am having a bad day, plus I am not exposed to germs!
I went back to the Revlimid for two more years. Meanwhile, other nasty side effects kept happening like neuropathy in my extremities and esophagitis with ulcerations in the stomach. I was referred to a gastroenterologist, who prescribed medication which helped a lot. The chemo fog frustrates me constantly as I search for that word I used to know. The absolute worst was that my hearing went from severe to profoundly deaf. Upon research, I discovered that Revlimid is a derivative of Thalidomide, which means it is an ototoxic drug that is “poison to the ears.” The diarrhea and fatigue were unrelenting.
My hemoglobin began to drop precipitously in 2019. My doctor referred me to an excellent specialist at the Cleveland Clinic named Dr. Mikkael Sekeres. She had already begun to give me Procrit shots, and they worked immediately at bringing up my HGM. She also began to prescribe Zarxio shots to keep up my white blood count, because of the risk of infection. In addition to the cancer, I also have an IGA deficiency so the danger of infection is great.
Dr. Sekeres explained that the Procrit shots would work for about another year, and a new drug was being approved by the FDA to come out in 2020 named Luspatercept.
The insurance has some strange protocol with the Procrit. The patient has to be below 10 for it to be approved. Once the patient gets to 12 (which is the low side of normal) then they can no longer have it. Once I reached the benchmark of 12, the HGM dipped immediately, but I had to wait until it went down below 10 again to resume treatment. Now there is a cheaper drug called Retacrit that achieves the same purpose. With the danger of blood clotting, I do understand this rationale by the insurance companies and the doctors, but I feel better when I am on these shots.
For the last year, I have gone weekly to the Cancer Center for the Zarxio and the Procrit or Retacrit shots. The Luspatercept was finally approved by the FDA for MDS in April of 2020 in the middle of the horrible pandemic. I was concerned that with the emphasis on a vaccine for the COVID 19, cancer treatments would be ignored but that has not been the case. I am not transfusion-dependent, so I have not yet taken it, since the drug is recommended for transfusion patients. It is such a relief to have it available, if and when I need it. If my blood counts continue to drop, I will have another bone marrow biopsy – my 18th one -to see where I am with the capacity of red blood cells. I have problems with walking and climbing stairs because the muscles are not getting enough oxygen. The danger cutoff for the red blood cells which are still working is 30% and I was at 40% a few months ago. This is where I am extremely lucky because of the fantastic medical care I receive from my oncologist. She monitors me constantly and is the reason I have outlived the 104 months!
One of the most challenging and unexpected side effects of cancer, that I rarely see mentioned in the literature is the dental issue. I have suffered from bruxism or “grinding of the teeth” all my life. In the 1980s, I was diagnosed with Temporamandibular Joint Syndrome or TMJ. This is a disorder of the joint which connects the jaw to the skull. It is further aggravated by ear molds from my hearing aids in the ears. I had braces for a couple of years and wear a splint at night. I had chipped more than one tooth and had a couple removed. So dental issues were common for me.
Then the tsunami hit in 2009. I had five root canals in one year, devastating my savings and involving grueling procedures. I knew something was wrong, but didn't know what. The following year I was diagnosed with MDS.
Since then I have had many teeth pulled because of being cracked and causing infection – five in 2019 alone! No one explained why until I pressured my dentist and oncologist. There is hardly any research on this that needs to be done. However, both my knowledgeable dentist and oncologist have explained that cancer can cause the gums to soften and teeth enamel to crack. I cannot have implants because the body will reject them. I am not sure what will happen in the future.
Dental treatment obviously stopped with the coronavirus. It has been eerie to go to the Cancer Center with hardly anyone there. But I have lived past the projected time and am thankful for every single day. I do not know if the Retacrit and Zarxio shots will work and for how long. I do not know what the dentist will do with my damaged mouth. I do not know if I will need to go on the Luspatercept and when. But I have today.
I do have some things that have helped me through my ten-year journey to share.
Reach out for help. I have lived alone for over 50 years, but know now I need to ask if I need food brought or someone to take me to my bone marrow biopsies, or walk my dog. Most people are good and want to help but you need to specifically tell them how!
Do what you can for others. I was sad, because I can't volunteer like I used to. But I started a card ministry at my church and through the pandemic this is what I could do. I am on the Patient Advisory Council for the new Cancer Center about to be built at Aultman, and feel I have suggestions and advice from the patient point of view. Plus, I have met so many great people with the professionals and other survivors.
Have a goal. It does not have to be a big one. Some suggestions are completing a scrapbook, or making something for a grandchild or sending a note. I have kept on writing and try to do a little bit each day. Frankly, this has kept me sane.
Join a circle of friends or faith community if so inclined. I do not know what I would do without my church family. I also have wonderful friends I constantly keep in touch with!
Use social media to contact others with similar problems if you cannot find a support group locally.
Do your research – then stop. If you get on 24/7 you will drive yourself crazy. An example is when first put on the Procrit; I looked up possible side effects. Of course, the drug companies list every single symptom because they have to. But once I saw the most common one was blood clots I knew to watch for that, and stopped. Be sure your sources are reliable. Website links such as AAMDSIF, MDS Foundation, Cure Today, Mayo Clinic, MD Anderson, and Cleveland Clinic are just a few reliable places.
Be honest with your doctor, I did not tell her for the longest time about my insomnia. When I did, she prescribed a non-addictive drug that has made all the difference.
Never give up hope. There are always new chemo’s and drugs on the horizon, and now more than ever before. Meanwhile enjoy the miracles of every day – beautiful babies, flowers, nature, and laughter.
The late Joan Rivers had a great quote. I think this is perfect for both cancer survivors and the pandemic where everything is so uncertain. Live by this:
“Yesterday is history, tomorrow is a mystery, today is God’s gift, that’s why we call it the present.” ENJOY LIFE!