I want to apologize for not posting for so long but have two reasons. One is that I contracted a nasty viral and was coughing my head off for over a month. It switched back and forth from viral to bacterial and finally seems to have run its course. The weather changes here in Ohio were not much help, plus with my low white blood count, I am catching anything that decided to fly by! I finally feel human again!

The second reason is I have been working nonstop on my book! I have the first draft typed and now am revising and revising. It is around 100,00 words and all on my own life and that of others who are deaf and hard of hearing. More to come later.

Between all of this, I have taken some overnight and weekends to places like Mohican State Lodge and Lakeside to enjoy the gorgeous fall in Ohio. I am an October baby, and this must be why it is my favorite time of year!

I wanted to share a great story about Sita. I went to a restaurant recently where we go frequently. The manager told me that she is so well behaved that she has taught him about what a real service dog is like. He now spots the fake ones because they do not behave as well! What a compliment and at age 15 she is still serving in more ways than one! I have attached a picture of her at Mohican with me.



Hello everyone! I just felt I had to purchase this T shirt. Cookie Carrasco is a fantastic Indian pitcher who has been diagnosed with leukemia and is back on the mound! The purchase of each one of these shirts means that donations are made to the cause of childhood leukemia. Additionally He is donating $200 for every strikeout in September which is Children's Cancer Month. Shane Bieber is donating $100 for each strikeout he does. Carlos Santana has donated an undisclosed amount and Frankie Lindor $1000 for every win! We hear so much negative about athletes and there are wonderful ones out there. I am wearing this shirt proudly to my weekly treatments! This cause is so special!.

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One of the important things about having a website is the dissemination of information. I recently learned about the asbestos-related cancer known as mesothelioma. I hope this article helps anyone who needs to know about mesothelioma. All of us cancer survivors need to help each other no matter what kind we have!

 What is Mesothelioma?

Mesothelioma is a form of cancer that involves the mesothelial tissue, which is found in the lining of the stomach, lungs, heart and other vital organs. Unfortunately, this is an aggressive type of cancer that is sometimes fatal in patients who do not respond positively to treatment options. It is almost always associated with unhealthy exposure to asbestos. Asbestos fibers are found in common construction products, such as insulation, flooring and shingles. Asbestos fibers make their way into the lungs when products containing those fibers are moved around or disturbed. Mesothelioma may not develop until several decades after someone has been exposed to asbestos fibers by way of swallowing or inhaling them.

Some of the most common symptoms of mesothelioma affecting the lungs include chest pain, shortness of breath, extended coughing, pain when coughing, unexpected weight loss or bumps and lumps in your chest. If you experience any of these symptoms, you should contact your doctor immediately to undergo testing. The other most common form of this type of cancer occurs in the abdomen. Symptoms of that form of mesothelioma include abdominal pain, abdominal swelling and unexpected weight loss.

The common ways that a doctor may test for mesothelioma include chest x-rays, biopsy or CT scan. These may be performed in conjunction with a physical exam and a review of your medical history to arrive at a diagnosis. Tests can also help determine whether the cancer has spread to other areas of your body and what stage of development the disease is currently in. The benefit of an early diagnosis is that you may catch the disease before it spreads throughout your body. An early diagnosis may also require less invasive treatment options.

Common Treatment Methods for Mesothelioma

If you receive a malignant mesothelioma diagnosis, there are four common treatment options. Depending on your diagnosis, a combination of therapies may be required.

Surgery is performed to remove the cancerous tumor directly. If the cancer is located in the lining of your lungs, a surgeon may remove parts of the lining, including some of the healthy areas.

Another treatment option is radiation, which uses x-rays to kill off malignant cells and prevent new cancerous cells from growing or spreading. Even after the surgical removal of some cells, radiation may still be recommended.

Chemotherapy stops cancerous cells from continuing to divide and grow. It can be taken by mouth or injected into the veins.

Targeted therapies are considered less invasive or risky than other options. They include drugs to stop the spread of cancerous cells.

Recommended Wellness Methods to Improve Your Recovery from Mesothelioma

If you are in recovery from mesothelioma, there are some steps that you can take to mitigate the symptoms of the therapies and improve your odds of a full recovery.

It may take some time before you feel up to resuming an exercise routine, but it is one of the most important things you can do to improve your recovery. Exercise may reduce stress and anxiety and improves overall self-esteem. In addition, you should maintain a balanced diet. This means eating at least two cups of fruits and vegetables a day. Avoid drinking any alcohol while you are in recovery. Do not take up smoking or using tobacco in any form. Keep stress and anxiety to a minimum as much as possible. Along those same lines, try to keep a regular sleep schedule that includes at least seven consecutive hours of sleep a night.

Consult your doctor about any dietary or exercise changes that you make during your recovery.

Article by: Sheryl Mason


I realize as school is starting up I need to continue to work on my next book. Like most projects I do - it is taking me a lot longer than I thought. However, I am writing several chapters on my internship experiences at National Technical School for the Deaf. I found dozens of pages of a journal I faithfully kept in my basement all these years since 1991. I feel it is so important to include these memories in my book because so much was going on, and this was the year that Gallaudet made American Sign Language the language of their campus. Now no one would even question that but in 1991 this ws a big deal!

As I feverishly work away - Sita keeps me grounded by enjoying every single minute. Here she is - almost 15 years old and still rolling in the grass. Dogs certainly teach us how to enjoy life as a gift! YEAH SITA!

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 Hi everyone!

through my writing of articles for Cure I was contacted by Rick Davis of ANCAN and asked to participate in the webinar for using the word survivor for people with cancer. Unfortunately I am unable to particpate becasue of my hearing loss, but we turned lemon into lemonade and he published one of my articles on Ototoxic Medications. You can find it on the link above. And ANCAN is another great resource for people to contact for support and help!




i am so excited to be one of the cancer survivors chosen to be in the Gallery of Hope. We are building a new cancer center there and I have been involved with the Patient Advisory Committee making suggestions. They called me and asked me to be a part of this. First there was a picture in the local paper of each of us in a special edition. Then each of us was featured for one week! Here is the link.

Sita was so tired becsue we stayed overnight at Lakeside and drove back to have the [icture taken late at night. But she is so photogenic it did not make any difference!

I feel truly humbled because there are many people who have had it worse than I have. I have met so many great cancer survivors and counht them among my friends! One of the pluses of having this insidious disease! I also consider myself fortunate to be a part of the great Aultman Cancer Center and the people there who do special services like this one! They are the best!

Improving the Health of Our Community – One Gift at a Time

Aultman Salutes Cancer Survivors

Gallery of Hope

Courage, determination, strength and above all, hope – every cancer journey requires these heroic qualities, and every survivor has an incredible story to tell. We hope to nspire you with the courageous stories of our survivors as we share one Gallery of Hope story each week by email and Facebook.

#TFCCCenteredAroundYou #TFCCHope 

This week, we would like to introduce you to Jane Biehl.

"My diagnosis is Myelodysplastic Syndrome, which is cancer of the bone marrow. I have been in treatment since 2010 with two different forms of chemo and recently Procrit shots. I have bone marrow biopsies every six months to track the cancer. When you hear the words, you have cancer, you instinctively know that life will never be the same. Make sure to surround yourself with friends, and tell them what you need, because no one can do this alone.

                Growing up with a hearing loss has also shaped my life. It brought my sweet therapy dog, Sita, into my world. We all know how short life is, but it really confronts us with a cancer diagnosis. But, if you start worrying about the future, you waste precious time in the present. Life is short – seize every single minute."

Learn More

The Aultman Foundation raises and administers funds
that promote health education and wellness outreach programming
to improve the health of the community. 


Together, we will improve the lives of neighbors in need.

  The Aultman Foundation
2600 Sixth St. SW  | Canton, Ohio 44710
330-363-4908 | erica.newman@aultman.org

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I have not visited the website for awhile and apologize profusely.  I will tell you what I have been up to!

 I have been working very hard on my book and think I have a title selected - finally!  It will be titled Hear Me Now – Growing Up Deaf and is the story of only my life, but a whole lot more. The book includes information on what it is like to be hard of hearing, and then profoundly deaf, information on Deaf Culture and how to understand better what it is like to have breakdowns in communication.

 I am old fashioned because I think well when I use long hand – there is something about transferring to the page from the brain.  I have finished the approximately 91 chapters in longhand. I am learning to use my laptop and go off to different coffee shops almost every day.  Local donut shops like Mary Anne donuts, Star bucks, and Dunkin donuts – I like them all.  Then I come home and transfer from the flash drive to my mainframe and large desktop computer.  I have double screens and it is easier and faster for me personally to use the larger computer and get my copy ready for the publisher.  Then comes the tedious job of rewriting and revising and redoing over and over again!

 My remission has been wonderful, but now my white blood count is down again.  We’re not sure if this means I am going out of remission or if it was just a fluke.  But, in addition to the Procrit shots I am now on Zarxio shots to increase both my red and white blood counts.  But it is soooo much better than being on the chemo with all the side effects and I am enjoying it immensely.

i also am very proud of the fact that I have written more than 100 articles for Cure Magazine and they mentioned this in social media!

  I spent last weekend at Ellicottville, New York at a wonderful wedding anniversary for my deaf friends Bill and Tressa Jordan.  They are very special, and Tressa was one of the people who encouraged me to get Sita, my hearing ear dog! 

 Now the country is in a massive heat wave so I am hunkering down and doing some writing this weekend.  I hope everyone stays cool and safe!




Hello everyone!

First of all I hope all of you have a safe and wonderful July 4th!

I was both humbled and happy to receive an e-mail from one of the editors at Cure Today that one of my articles was retreated by Livestrong. This fantastic national program sponsors personal training, nutrition classes and other wonderful events for cancer survivors so it was really great to have them choose one of my articles. The North Canton YMCA which I use has a fantastic program. Every author will tell you they have a favorite or two among their writings and this one was one of mine when I wrote it! Please enjoy!




Hello everybody!

I have done several programs lately on the unique relationship between a service dog and the partner. Several people wished they had taped it. My great friend from church, Kent Rothermel, does the videotaping of all our services at the church that I love - Congregational United Church of Christ in Canton, Ohio. He did this You Tube for me. I hope this gives all of you an idea of all the wonderful reasons to have a service dog.

I apologize to my deaf and hard of hearing friends because the captioning is so bad. You Tube needs to really work on this!


Love from Jane and SIta

My favorite picture of Sita and me!

My favorite picture of Sita and me!


Hello Everyone!

      I have posted several articles on the website but am very much behind on the general update.  I apologize and here goes!

     So many wonderful things have been happening with my writing! The great liaison, Audrey Hassan, with the MDS Foundation found me through the website.  She called and asked me to write an article on my MDS Journey.  I asked how long and she said any length.  I looked at some other stories and spent several days pondering over the article.  After I sent it, she called me and asked permission to feature it in the next E-news and in the print copy in the fall.  I did not think it was that good and was so happy!  It is under the story “My MDS Journey…And Lessons Learned” on my Life Blog.

      What I did not include on the blog was the timing of her call.  I had been exceptionally tired for several weeks.  A bone marrow biopsy and blood work found me going backwards.  My oncologist called the Cleveland Clinic, which is an hour away from where I live.  She told her contact I was a writer and he said there was a great doctor there by the name of  Mikkael Sekeres, who was an expert on MDS and also a writer!  He writes human and patient interest articles for the New York Times and I loved his articles.  I started on Procrit shots to get my red blood count up and two days later was at the clinic.  He was great and we really hit it off.  He said there were two more possible chemos for me coming up for approval.  Meanwhile I could take the Procrit shots for about a year.  Since I was up against the expected length of my life I was thrilled!  This man has an international reputation!

     I did ask him when he found time to write in his busy life.  He replied that he wrote while he was traveling.  He asked me and I explained that many afternoons I went to the nearest coffee shop and wrote there.  He said “Isn’t it noisy?”  I laughed and told him I just take my hearing aids out – he loved that!

     It is great not to have the side effects from the chemo, and I have been going strong.  I am close to 100 articles for Cure Magazine since I started several years ago.  Cure Magazine picked one of my stories for their print copy for the spring edition and their new magazine, Heal, just published another one for their spring edition also. 

      Meanwhile, I am struggling with both a title and finishing up my book on growing up deaf.  It keeps expanding as I find more and more to write about!  It will be around 90 chapters long.  I have them handwritten and then will type them into the computer – then revise and revise.  There is so much to tell - an advantage of being old!

      I am also on a committee for patients who are giving input for the brand new Cancer Center at Aultman Medical Center, where I get my treatments.  A group of physicians, architects, administration, nurses and patients met for a couple of days at the Football Hall of Fame center.  I learned so much and am excited to see they will break ground soon!  I will keep you informed!!

      Finally – I am still working with Circle Tail, where I got Sita from.  I am going down in two weeks to visit a college friend, and will take a carload of towels, sheets, and other items for the puppies there.  Sita is doing amazingly well and sits outside by the hour in the warm weather.   Here she is chilling while I am writing at Starbucks patio!

     That is all for now and I will keep you posted!  Have a wonderful summer!!!   




Cure magazine is really expanding and how has a second publication called Heal to assist even more cancer survivors trying to take their life back! They published one of my articles in the digital form titled “Cancer Survivors-Don’t Blame Yourself. “ It is a reminder to be gentle with ourselves when we are diagnosed and not to self - blame for being sick. There will also be a print copy. I am so excited and humbled! Click on the link and then go to Voices and it will bring up the article. I hope this is helpful!


Little did I realize that when I started this website there would be people from all over the world reading it. This came to me in an e-mail. It is fantastic information and I asked Jelle if I could please share it. Since there is not as much information on blood cancers as some of the other types we need to inform and help each other! However, this would help anyone with any type of cancer! If anyone else has information they wish to share please e-mail me at Jane.M.Biehl@gmail.com

Thank you so much Jelle!

With great interest I’ve read your blog on Cure Today on cancer fatigue. My name is Jelle Damhuis, 27 years old and I live in Utrecht (Netherlands). I am reaching out to you in hopes that you could help me share some important information. Unfortunately I suffered from cancer myself and I want to share my positive experiences with the app Untire with you. At age 21, I was treated for a spinal cord tumor and last year January was diagnosed with a non-hodgkin lymphoma. After a successful treatment with chemotherapy I am now in complete remission. After treatment I suffered, like 30-40% of the cancer patients and survivors, from extreme fatigue. During a walk through the city of Utrecht, I came in contact with the company Tired of Cancer and their app Untire.

Untire is an app which helps you understand cancer fatigue, gives you exercises to reduce stress and tips to improve your mood and energy. The app was developed by a team of psychologists and researchers specialized in psycho-oncology with the mission to help as many cancer patients and survivors as possible. Untire is free to download and use for everyone. You can find more information about the app on the website www.untire.me or watch this short video: : https://www.youtube.com/watch?v=GsrEJS96iC4

Currently I am reintegrating in to work by being part of the Tired of Cancer / Untire team. My goal is to make as many people aware of this as possible, as Untire is a really valuable app. Through your blog I would like to share this 'digital medicine' so others can find help just like I did. I would love to hear your thoughts and experiences with the app and it would be great if you could share Untire with others affected by cancer related fatigue. We are open to other suggestions on ways we could spread the word together.

Enjoy your day and I look forward to hearing from you soon.

With kind regards,

Jelle Damhuis


Dr. Jane:  Is Imagination More Important Than Research?
"It is so easy to become discouraged, depressed and feeling ill all the time. But when this happens, cancer survivors can think about Albert Einstein."
Our good friend and MDS patient, Jane Biehl, is a prolific author who shares her insights into being a patient and a survivor. We thought her take on how having a little imagination (and a whole lot of hope) can get you through. You can find all of Jane's articles with Cure Magazine online. We hope you find Jane as delightful and insightful as we do!




AAMDS is an acronym for Aplastic Anemia and MDS foundation and can be accessed at AAMDS.org. This organization is a gem for information on Aplastic Anemia and MDS. To my utter surprise they featured one of my articles in their February 2019 Newsletter! And yes - they included this picture of Sita and me!

Jane Biehl: Living With Fatigue
"A standard dictionary definition of fatigue, according to Medicine, is, 'extreme tiredness resulting from mental or physical exertion or illness.' Fatigue can also be acute and come on suddenly or be chronic and persistent. This describes what many of us experience."
MDS patient Jane Biehl began writing about her experiences and views on life as a MDS patient and survivor. In just over two years, she's written over 50 articles. Many of these have been published in Cure magazine and she's adding new ones all the time. This month, we present Jane's article on experiencing and living with cancer fatigue.




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!


 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?


 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.


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!


 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.


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!


     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!

     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.


 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.


 If you are inclined this is so important.  My faith community has been there every step of the way.


 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.


  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!


 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! 


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.


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.


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.






When I went to see my oncologist for an appointment she told me that the Cancer Center where I go for treatment was having a Vision Board program and she would like me to come.  I asked what that was.  My sister was with me and they both explained that I should bring pictures along and put them on the board.

 I went to the program with several pictures from my traveling, of my precious hearing ear dog who was with me, and of my books.  I even slipped in a picture of my oncologist, who has been my role model for 9 years and kept me alive.

 About 25 people gathered including staff, my oncologist and her husband, cancer survivors and families including children.  There was a long table of clip art and a pile of magazines.  They showed us a video and asked us to begin. We were to visualize our goals.

 I had no idea where to start, but did not want to sit there looking stupid.  Everyone else looked like they knew what they were doing and was busy.  As I looked at my items I realized that I wanted to do more writing, take more cruises and spend more time with my hearing ear dog.  The board actually evolved and I was thrilled with the results.  I then printed out the slogan “Write” and “Travel” and “Dream.”  I looked at the table and saw the “Best Self.”  These would make me be my best self.  I then placed the picture of my oncologist on the Glacier Bay picture from Alaska, since she also enjoys traveling.

 If you Google “.Vision Boards,” there are lots of articles and videos.  This is a worthwhile activity I would advise anyone to try.  Ideas can range from self improvement, to health and fitness, to home improvement and a plethora of other goals and dreams. My wise oncologist, Dr. Trehan and the great staff at Aultman Hospital Cancer Center realized something important. The visual boards gave all of us cancer survivors an important emotion - HOPE!   Try it and enjoy! You will be glad you did!



Hello all!

I am aware that I have not posted for awhile.  It has been a crazy time for me.  A few weeks ago I got a nasty sinus infection, which mostly caused severe headaches.  I was concerned because I am on Procrit shots, which can cause blood clots.  I was on a couple rounds of antibiotics.  When I went off, I noticed tooth pain.  I went to the dentist and was concerned it was another root canal.  It was far worse – two cracked teeth down to the roots so no root canal could be done. 

 I went a week later to the oral surgeon and had them pulled.  It was not a fun experience.  Now with the cancer the big question remains whether implants will work. The oral surgeon is saying one thing and my regular dentist, who is great and has known me for over 25 years, thinks they won’t work.  I asked the surgeon to talk to my oncologist.  Those of us with cancer truly have to be on top of it all – and we get tired don’t we?

 But Friday I got very good news.  Audrey Hassan, editor, researcher and friend of all of us called me from the MDS Foundation.  She asked if I would be OK with having the article I wrote several weeks ago published in the e-news next month and the print copy in the fall.  I stammered that I did not think the article was that good while she said “Are you kidding?” I tend to not be as confident about my writing – or anything else – as I could be, but am thrilled!

Meanwhile – I am on chapter 63 of the book I am writing on Growing up Deaf.  There is so much to tell and I have no idea when I will finish, but I feel deep down this is my best book yet.  I can see how many people it will help including deaf/hard of hearing/parents/children/teachers/interpreters/friends of the deaf and so many more!

Sita and I have been outside some which is wonderful.  We go to the nearest coffee shops and she loves to sniff the air while I write.

 I am getting great messages from many of you and please do keep them coming!  More later and love to all my readers!