I was thrilled last month when the editor of the internationally known MDS foundation, Audrey Hassan, contacted me and asked if I would write an article for their monthly newsletter. This invaluable edition of fantastic information also features a section for patients and caregivers to share their stories. I labored over it and sent it. She called me a month later and asked if they could put it in the MDS e-news. They are also featuring a print copy of this article in the fall. I stammered “of course you can - but I did not thin k it was that good! Her answer was - are you kidding?’” For further information check www.mdsfoundation.org
Here is the article in full and I hope it helps others with this rare and insidious disease. I also have included the link above.
Another interesting piece to this story - she found me on this website!
I hope you all enjoy reading this as much as I have enjoyed writing it!
MY MDS JOURNEY… AND LESSONS LEARNED
I am not one of those people who can say I was in perfect health, and then one day was diagnosed with cancer. I have never been healthy. My mother and sister remember terrible sinus infections as a child when I struggled to breathe, and I recall hanging over the bed getting smelly nose drops leaving a terrible taste in my throat. I was fairly healthy in middle and high school and even had perfect attendance records. I was active in sports and did well.
I was born with a severe hearing loss, which was diagnosed when I started school. I wore a body aid all through until college, then I received behind the ear aids. My mother had the flu when pregnant with me, which doctors later conjectured caused Cytomelavirus or CMV. There was no history of hearing loss in my family.
When I started college, all hell broke loose. I lost over 30 pounds my freshmen year and then experienced nosebleeds. I went to the health services and then home. I was diagnosed with a kidney infection. I spent 21 days in the health center bed taking medications, getting notes from my friends and professors and finally finishing my freshman year. That summer I was referred to an urologist and admitted to the hospital for tests. I failed to respond to antibiotics and was sick all through college including 10 days in the hospital my sophomore year, and having to drop a semester of college. My junior year I trudged daily to the health center for 61 days getting shots of Loridine. I was on antibiotics for six years. I then left to go south to Atlanta for my master’s degree and felt better in a temperate climate.
When I returned to Ohio for a job, the kidney problems disappeared, but I started constant bronchitis and upper respiratory problems. I was continuously on antibiotics. My family doctor referred me to Ohio State Medical Center where I was diagnosed with a rare IGA immune deficiency by an excellent infectious disease specialist. Later, an immunologist from the Cleveland area diagnosed this as an insufficiency, since I have some immunity. It means one layer of immunity is gone, but the next layer is there, which keeps me from becoming fatally ill. The only treatment was symptomatic, but it explained why I was sick all the time.
I worked for the library profession and had several different jobs ranging from children’s work to director. I decided I wanted to do something different and work with people with disabilities. In spite of all my health problems, I was very driven and went on to obtain another masters and a doctorate in counseling. I often worked two jobs and long days were the norm for me. Doctors would tell me to slow down, but I continued to work very hard. I did counseling for another 17 years and taught off and on for over 25 years at three different colleges.
Fast forward to 2010 and life was good. I was collecting a pension, and working two jobs I really enjoyed. One was as a part time counselor in a private practice working with abused children, and the other was as an adjunct faculty member in a community college. My mother had died at the end of 2008 and since I lived close by and saw her every day, I really missed her. 2009 was stressful for me settling her estate and adjusting to not having her around. By 2010 life had settled down. I had received a gorgeous yellow lab hearing ear service dog. We had wonderful times together after work walking in the fields near my home. I had many close friends and my family would visit from out of state often.
One thing that was really striking was the need for 5 root canals in 2009. I suffer from Temporimandibular Joint Syndrome and Bruxism, but this was over the top. After my diagnosis, dental experts explained that those of us with cancer often suffer from dry mouth and changes in our body. I think the cancer was already rearing its ugly head, but cannot prove this.
I was exceptionally tired, but thought nothing about it. I was on constant antibiotics for various infections, but this was normal for me. I went to the family doctor for a routine physical, and he noted my blood counts were low. He put me on iron and did some follow up blood work a few months later. His office called me and said my blood counts were going the wrong way, referring me to a hematologist/oncologist.
Now you would think this set up red flags for me, but I was so convinced it was a blood infection from the IGA deficiency that I was not overly concerned. I figured they would find some infection and treat it.
This was one of the first times I did not follow my gut. I called the office for an appointment, and the receptionist told me the doctor to whom I was referred was very busy and could keep me waiting for appointments. I should see the other doctor. I should have been wary when an office does this, and found out later that patients loved the first doctor much more than the second one. I suspect the office was attempting to divert patients. I figured one or two visits would be fine, so I agreed to see the second doctor. She took eight vials of blood, and when she could not find anything, suggested a bone marrow biopsy. I still didn’t understand what was happening, so when she asked if I had any questions I said no. Cancer never occurred to me and I was in denial. After the bone marrow biopsy, she told me I had Myelodysplastic Syndrome. I couldn’t pronounce it much less spell it! Then it hit me like a ton of bricks – I really did have cancer!
I went home and started researching a little bit. There were confusing results on the Internet because some people lived 18 months and others 9 years. Some experts called it a cancer and others did not. I returned with a friend with me to see what the follow up plan would be from my doctor. I was having some trouble hearing the doctor and knew my friend would help me.
The doctor acted as if she was asking me for a cup of coffee when she stated “The average life span for this was 104 months.” The world spun as my friend grabbed my hand, and told the doctor this is a lot to take in. She droned on that there might be new drugs down the road, but I was in shock and not absorbing anything. I was furious because as a counselor I was used to giving bad news and thought this was psychologically reprehensible. “But you caught this early, “I stammered.
“Oh this is not like other cancers with stages 1 – 5,” she answered, but never said anything more. She did not take the time to explain this was a blood cancer or outline a treatment plan except to put me on Procrit shots and Revlimid. She did not ask if I had any questions. I tried to ask questions about the Procrit shots I was getting and the Revlimid I was prescribed, but she simply left the room in a hurry. When I tried to question the nurse, he was worse. I told my friend I would find an oncologist who would fight with me to the end and be with me. She said I would not be able to find one. I thought to myself – watch me!
I used my contacts and went to another wonderful, warm and caring oncologist at the Aultman Cancer Center, Dr. Shruti Trehan. She is one of the brightest people I know and extremely compassionate. She lets me be involved in my health, answers all my questions, and researches night and day to find new treatments for her patients. I am convinced I would not be alive without her.
I looked up the MDS, which was deletion 5q with the prognosis of being the type where patients typically live longer. I later found out that MDS was not called a cancer until 2008, thus the confusion over the name. Originally it was looked on as a bone marrow failure, and then scientists confirmed there had to be a bad cell to start the problem, so it is classified as a cancer. I finally stopped reading about it and started living.
I began on the Revlimid, and found how naïve I really was. I made the mistake of thinking because it was oral; it would not have the side effects an IV medicine would. This might be true, but there were still many problems. The first to hit me was the extreme fatigue. The second was the constant diarrhea.
The worst was my hearing loss. I had heard about ototoxic medications and taught about them in college. But Revlimid wasn’t on the list. When I visited my audiologist, I realized why the world was fading away. My audiogram was much worse and had gone from severe to profound. I mentioned this to her, but she thought it was Presbycusis due to aging. I disagreed and realized I had switched to her recently and she did not have all my records. I brought in my earlier audiogram, and she was shocked too. I had lost about 25 decibels. We decided since I still had about 10 – 15 decibels left that we could try to preserve that. I have hearing tests every few months and if it worsens, she will contact my oncologist. I also dug deeper and found out that Revlimid is a derivative of Thalidomide, which is an ototoxic drug. The oncologists tell me say they have not heard of hearing loss due to Revlimid. However, I had a previous hearing loss and was on the Revlimid a longer time - 6 years. So I was the perfect storm. I became an advocate and wrote to the Food and Drug administration to place warnings on the labels. I wrote an article on ototoxic medications for the national Hearing Loss Association of American magazine. I even presented on this topic at a national conference in Salt Lake City. As the Revlimid made me more and more tired, I was forced to quit my counseling job, but continued to teach part time.
I also began experiencing terrible stomach pains. Dr. Trehan referred me to a gastroenterologist and I had esophagitis with multiple ulcerations. I looked it up and yep – a potential side effect from chemo! One magic pill helped this problem so I was lucky!
When first diagnosed, I went to Case Western Reserve University Hospital in Cleveland. The first doctor was great but left, and the second one retired. Before he left, he told me I was in good hands with my local oncologist and I already knew that! I then went to the James Center in Columbus. I really liked the doctor there, but she didn’t communicate with my local oncologist and I couldn’t drive 2 ½ hours away if I became really sick. So that option didn’t work either.
After 6 years of twice yearly bone marrow biopsies, the numbers of my deletion 5q compromised cells kept increasing. Dr. Trehan and I decided together to put me on Vidaza shots. Meanwhile, she told me that I should leave teaching because of the risk of infection. I sobbed and sobbed because teaching was my passion.
However, we cancer survivors learn how to make lemonade out of lemons. I began writing articles for Cure Today magazine and in two years have written over 80 articles. I also am writing now for MDS foundation and AAMDS and loving it.
I had a picture book self published on my beloved hearing ear dog in 2012 called Here to Bump and Bump to Hear. I published two more books in 2018. One was titled Paw Prints on my soul: Lessons of a service dog and is a devotional on what my dog has taught me about love and caring. The second book is a compilation of several of my articles about my cancer journey, and is titled Life is short – Eat the donut! The articles are all on my website www.janeandsita.com. The books are available on Amazon.com. I am presently working on another book about growing up with hearing loss. This has turned out to be a perfect occupation for me, because I can write from home on my good days, and am not sick nearly as much as I was when teaching and working with kids.
The Vidaza shots were painful and I started with 7 days, and then cut back to 5 days every month with 2 shots in the stomach. I learned to cherish the oncology nurses who took such good care of me.
For vacation plans, I decided to take cruises. I would suggest this for anyone who is ill. I can stay on the ship if I are having a bad day, or go off and enjoy the excursion on a good day. I meet fascinating people and eat great food! I like being waited on and spoiled! I began traveling all over with family and friends
After two years of having the shots, I went for a bone marrow biopsy and told Dr. Trehan that my stomach was really sore. She took one look at the red and swollen area and put me on antibiotics, salve and took me off the shots. I found out later this was a rebound effect from the chemo.
I was suffering even more side effects, including loss of balance, shortness of breath and peripheral neuropathy. I have been working with a personal trainer at the Livestrong program at the local YMCA and she has helped immensely with balance. I also attend nutrition classes there. One of the best suggestions the nutritionist had given me was to drink Kefir which is full of pro biotics to help me with the intense diarrhea. However, I went back on the Revlimid for a couple more years after the Vidaza rebound, and the diarrhea became worse. Dr Trehan decided since the bone marrows were unchanged, I should go off the Revlimid for awhile. I think all cancer survivors can identify when I say that I thought diarrhea was normal after 8 years until it stopped! It is amazing how our bodies learn to adjust.
But I could feel the cancer progressing. I went on a cruise to Quebec, and took a side trip. I didn’t know that it would be pouring down rain, uphill on cobbled streets and no place to sit. I could barely put one foot in front of the other and walked, slower and slower. I barely made it to the ship in time for the gangplank to go up. Later, Dr. Trehan explained to me the oxygen was not getting to the red blood cells. My muscle aches are always there and she also gave me a prescription cream to help.
During the cold months, I noticed my extremities were bothered by the weather and tingling. I knew then I had peripheral neuropathy. I did not realize how dangerous this can be until I clipped my toenails one evening. I looked down a few minutes later and was bleeding where I had accidentally cut my toe. The scary part was I never felt it! As I stanched the bleeding, I realized how careful I needed to be.
I contacted Dr. Trehan a few weeks later, and said I was exceptionally tired. Through all these years, by some miracle, my hemoglobin had stayed above 10. She said when it went below I would need Procrit shots. At first my blood work was stable, but two weeks later my hemoglobin had dropped from 10.4 to 9.4. The bone marrow showed all the cells were compromised. She immediately referred me to the Cleveland Clinic and I was nervous.
I had made three previous trips to the Cleveland clinic over the past 50 years. The first trip was to an urologist, who barely talked to me and told me I had a routine bladder infection, go home and take antibiotics. My urologist at home was furious and said he would have thrown up his hands if he saw how sick I was. I was on the antibiotics for 6 years, which is hardly routine!
Twenty years later, I went back to the Cleveland Clinic ENT department because of ear pain, and that doctor also spent no time with me. He reported to my local doctor that it was nerves. A friend told me to look up Temporimandubular Joint Syndrome with deferred pain to the ears. I had a terrible case of TMJ and spent two years with the dentist and orthodontist wearing braces to correct it. I still wear a mouth guard at night. Fifteen years after that I visited an infectious disease specialist after having fever and swollen glands for months. They couldn’t find my records; the doctor forgot the appointment, and came in late. He told me I did not have leprosy and sent me home. After several months the symptoms finally went away on their own. I think it ended up to be inflammation all through my body because of the IGA deficiency. But wouldn’t he know that? I was tired of diagnosing myself.
My next step just proves to me that we need to be persistent. The Cleveland Clinic today has a stellar reputation for cancer treatment. Dr. Trehan called and made a referral to an oncologist she felt would be a match. This fourth time was the charm. The oncologist there, Mikkael Sekeres, was fantastic. He has a worldwide reputation with working with MDS patients, according to both the MDS Foundation and AAMDS. He is a rare combination of being both compassionate and knowledgeable.
Best of all he gave me hope. Dr. Trehan had prescribed Procrit shots two days previously and already had my hemoglobin back up to 10 again. This usually doesn’t happen so quickly, but I was very lucky! Dr. Sekeres told me not to worry about the compromised cells, since they were not malformed. I could be on the Procrit shots for a year.
Then Dr. Sekeres told me that two new possible drugs would be out by the end of the year, and one just for MDS. I had been so discouraged thinking that I was running out of time and options. I was nearing the end of the anticipated life expectancy for my type of cancer. However, the great thing about having cancer today is that research can come up with new possibilities all the time. For 9 years Revlimid and Vidaza were the two main chemo’s you heard about, but now there are more!
I have been so fortunate to have my loyal service dog, who is now 14, by my side teaching me how to take every single day and enjoy it. She makes me laugh every morning and shows me the love of life. My 12 year old kitty is always in my lap.
I have a wonderful family, many great friends and a fantastic loving church. I am surrounded by love and prayer.
My journey is certainly not over, but constantly evolving. And that is part of life itself!
What have I learned and what do I want to share?
REACH OUT FOR HELP
I have lived independently alone for over 50 years. At first, it was hard for me to reach out and accept help. I asked a very close friend to go on doctor visits with me, especially to new doctors when I am not sure I can hear them. She has been to every single appointment at the large clinics to be both my ears and support. She takes me to all my biopsies and I am so lucky. Other friends have brought food. I pay someone to clean and help me around the house more often.
DO WHAT YOU CAN FOR OTHERS
If you have always been busy and doing for others, you can find another way. I used to volunteer at churches, group homes and other places, but with my fatigue level and compromised immune system this is not feasible. One of the best things I can do is send cards to people at my church and in my community. It means a lot to them and can be done on cancer time!
ALWAYS SET UP A SMALL GOAL FOR YOURSELF
My goal is my next book. Sometimes a chapter a day is about all I can handle. Whether it is tending to a garden, cooking a small dish, engaging in a hobby, or doing scrapbooking for your grandchildren – set up something to keep you going every day.
DO THINGS JUST FOR FUN
It doesn’t have to be a big fancy cruise. Going out to dinner, visiting with friends and family or just sitting in a park can help. And remember to laugh, because this is truly medicine for the body and soul!
KEEP YOUR FRIENDS AND FAMILY CLOSE
If some of them are negative, you may not want to be around them for long periods of time. But if they are positive and you remain connected, it will do you all the good in the world. It is so easy to just concentrate on your cancer. But other people have their problems too and it helps to talk to them about their situation. After hearing other people’s problems, I often feel lucky!
Enough said – it does wonders for you! Your body needs sleep and when it tells you - listen!
DON’T BE AFRAID OF SOCIAL MEDIA
If you are involved in social media, it can help. I was so afraid to show how discouraged and vulnerable I was when I was on the Vidaza, had a bad sinus infection and facing a gray Ohio winter. One day I got on Facebook simply asking for positive thoughts and prayers. The responses just blew me away. People I knew from all over the world gave me encouragement and support and thanked me for being “real.” You do not have to tell people every detail of a problem, but they are usually there when you need them. Just remember that most people are good.
REACH OUT TO PLACES LIKE CURE TODAY, AAMDS and MDS FOUNDATION.
These employees are fantastic and want to help. They would not be doing work with cancer survivors if they did not. They can give you invaluable information on the new drugs, good doctors and hospitals to go to and where support groups are.
JOIN A FAITH COMMUNITY
If you are inclined this is so important. My faith community has been there every step of the way.
LET YOUR FRIENDS AND FAMILY MEMBERS SURROUND YOU WITH LOVE AND HELP
They do want to help, but sometimes you just have to tell them how. Tell them you want to just cry. Or talk about your cancer. Or not talk about your cancer. If you need someone to visit and bring food speak up. They do not know how to help you if you do not ask.
IF THE FIRST DOCTOR OR CANCER CENTER DOES NOT WORK WELL WITH YOU – FIND ANOTHER ONE
As I explained, I went to three well known cancer centers before I found the right one. I switched local doctors and now have Dr. Trehan, who has kept me alive for nearly nine years and done it with love and grace. Keep looking until you find the right persons and places!
RESEARCHING IS GOOD THEN STOP!!! AND KNOW WHEN!!!
Every patient is different. If you begin to read all the bad things every single person suffered from side effects from chemo, you will drive yourself crazy. Be sure you are getting reliable sources like American Cancer Center, Cancer Treatment for America, Mayo Clinic, MD Anderson, Cleveland Clinic etc. The Internet will print anything and you need to be discriminating where the information is coming from. A patient is not always a reliable source, but a medical center of good reputation usually is.
Here is an example. I looked up Procrit shots after they were prescribed for me. To my surprise, the most dangerous side effect is the possibility of blood clots. Instead of ruminating over 15 or 20 other possibilities, I figured that was the most important, and if I turned red go to the Emergency Room! I got off the computer and read a book!
ATTEND CLASSES IN NUTRITION, REIKI, EXERCISE, BALANCE, AND YOGA
I am so lucky that these are offered for free by Aultman Cancer Center and my local North Canton YMCA Livestrong program. These are invaluable programs.
ASK YOUR DOCTOR
There have been times I have looked up research and realized I just need to ask Dr. Trehan? She knows me better than anyone. And I need to be honest with her. I have talked to her about a number of problems like insomnia, which I never had before. She told me this is absolutely normal for cancer survivors and prescribed a non habit forming medicine to help me sleep.
ONE STEP AT A TIME – AND DON’T’ GIVE UP HOPE!
The last piece of advice seems so simple but it is not. The author Robert Updegraff said it all when he reminded us “Happiness is to be found along the way, not at the end of the road, for then the journey is over and it is too late.” I do believe in miracles like newborn babies, and blooming flowers and gorgeous sunsets. Another miracle is that just as my anticipated life expectancy is reached, new drugs are being developed. Just take the cancer journey one step at a time. That is all you can do – and never give up hope! Sometimes this is all we have and it has to be enough.