THE UNIQUE RELATIONSHIP BETWEEN A SERVICE DOG AND PARTNER

https://www.youtube.com/watch?v=Bkw7bUYmqiI&feature=youtu.be

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!

ENJOY!

Love from Jane and SIta

My favorite picture of Sita and me!

My favorite picture of Sita and me!

AN UPDATE ON SO MANY EVENTS!!!

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!!!   

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ONE OF MY ARTICLES IS PUBLISHED IN HEAL MAGAZINE!

https://www.curetoday.com/publications/heal/2019/spring-2019?utm_medium=email&utm_campaign=CURESS%20heal%20New%20Issue%20Ale

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!

GREAT INFORMATION FROM THE NETHERLANDS!!!

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

ANOTHER FEATURED ARTICLE IN AAMDS NEWSLETTER!

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!

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ARTICLE FEATURED IN AAMDSIF NEWSLETTER


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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.

MY MDS JOURNEY...AND LESSONS LEARNED

https://gallery.mailchimp.com/e4f8c6774f935c5e98accb9e6/files/ddef5173-9741-4633-8d2e-3922dfb053c0/4_11_Biehl_PATIENT_STORY.pdf

 

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!

 TAKE NAPS

 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.

 

   

       

 

VISION BOARDS ARE SO MUCH FUN!!!

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!

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UPDATE AND WHY YOU HAVE NOT HEARD FROM ME!

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!

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SITA AND I DID ANOTHER PROGRAM TODAY!!!

Sita and I had a wonderful experience today. A woman from my church is a member of Eastern Star. She arranged for Sita and me to do a program on service dogs because Eastern Star is sponsoring a project now There were over 175 in attendance. I spoke from the heart and told them what Sita means to me. She was out of vest afterwards and charming everyone. They had a table with stuffed dogs and made up stories about service dogs. Cathy did not have to make hers up - she told the true story about Sita! I autographed books afterwards. I am thrilled that more and more people are learning about the wonderful tasks service dogs can do for us!

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SITA AND I ARE ON THE PROGRAM CIRCUIT AGAIN!

I was a college teacher at three different universities for over 35 years. My first job was at Walsh College (now university) in 1086. I am so happy to be back at Walsh doing this program for Disabilities Week talking about Sita. Life does go full circle! Kudos to the wonderful office of Disabilities Services under the great leadership of Meredith Soduk for sponsoring this week to educate faculty and students.

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SURPRISE - KEYNOTE SPEAKER AT CIRCLE TAIL!!!

Circle Tail, the agency where I received Sita annually does a wonderful “Wine and Canine” benefit. They have great wine, a delicious dinner. and wonderful raffles, baskets, raise your paw donations and silent auctions. This is their biggest fundraiser. Jen Kiblinger, president and Marlys Staley, director, spend a year planning this event along with over 100 volunteers..

I had suggested to them that they have the human and canine partners speak. But the people there did not want their dogs to be presented so late at night (8 PM). They were in a great video. However, I was the only live speaker - thus the keynote!

It was very hard not to have Sita there. However, the long drive from my house to my friend Ruth Fischer, would be tough on her. Also the dinner itself was 5 hours long. So I decided to have her stay with great friends and went without her..

I told my wise friend, Ruth, I was nervous and she reminded me that I did not have Sita with me. She went along with me and was a tremendous support. She was right - Sita is so cute that if I fouled up, I knew she stole the show! I really put my heart and soul into describing all the tasks she does for me including both heartwarming and funny stories. The audience was extremely attentive. I took my books to be donated to Circle Tail. All of the books “Paw prints on my soul” were gone and several copies of “Here to Bump and Bump to Hear.” Even my book on cancer, “Life is short - eat the donut” had several fans. I left some copies to be sold in Circle Tail’s store.

It was wonderful to help out and I loved this dinner. I know they raised a lot of money for this great cause. And yes - Sita was thrilled to see me when I got home!.

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DELIA OWENS WAS AMAZING!!!

Last evening I had the pleasure of hearing Delia Owens speak at Book a Million in North Canton, Ohio. She was wonderful. She had written 3 nonfiction books and “Where the Crawdads Sing” was her first fiction book which sailed to the New York Times Best seller list. When asked which was easier to write I loved her answer. She explained that non fiction was more factual and like being in a cage. Fiction meant you were out of the cage and could take the book anywhere you wanted to go!

This book is now being made into a movie. She is also working on a new fiction book. She lived for 23 years in remote Africa and had many stories to tell including how she was charged by lions and elephants, but dreaded public speaking even moire! I love hearing the different authors speak.

I have over 40 chapters written for my non fiction book and am still writing away. I am being deterred by income tax which is not nearly as much fun!

Also - the international Myelodysplasia Foundation has written and asked me to write an article for them on my journey with MDS to be published in their next newsletter. I am busy and happy. My health took a little downturn when my blood counts went haywire but I started some shots to get the red cells going which are working very well. So life is good! More later - another book signing coming up soon!

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AN AMAZING AUTHOR - DELIA OWENS IS COMING TO NORTH CANTON!!!

As many of you know, I love to listen to other authors speak and it helps me with my own writing. I am so pleased that Books a Million at the Strip in North Canton, Ohio, is featuring Delia Owens on February 20th, 2019 from 6-8 PM.

My book club really is fantastic and forces me to read books outside of my comfort zone. Our selection for February was Delia Owen’s book “Where the Crawdads Sing.” I knew nothing about this author except her book was number 1 bestseller on the New York Times Bestseller list!

Any reader would find something wonderful about this book. Her description is unbelievable. She and her husband lived in Africa for many years and the story is about a young girl called the “Marsh Girl” who was forced to live on her own after being deserted by her family. The author takes you away to the marshes in North Carolina and teaches you so much about wildlife. The characterization is incredible and you feel like you know the people in the book. Finally there is an intriguing mystery when someone is killed and a twist at the end of the book that will keep you gasping.

If you have a chance to read this book - please do it. And know how fortunate we are to have her in our back yard! There is a charge but you receive her book! If you cannot go, I will be following up after I hear her program! Contact BAM for more details!

PLEASE HELP CIRCLE TAIL BY FOSTERING PUPPIES!!!

Many of you have met Sita and read about her on Facebook.  Several of you have read my recent book Paw prints on my soul: Lessons of a service dog.  You therefore know how this amazing dog opened up a whole new world to me of sounds I never knew were out there and how she keeps me safe.


I received Sita from a wonderful agency called Circle Tail near Cincinnati.  For over 20 years under the direction of the great Dog Whisperer, Marlys Staley, this agency has managed to partner people with mobility issues, hearing problems and diabetes and other physical problems with the perfect dog companion for them.  Presently they are breeding and whelping dogs on the grounds and need your help.


Circle Tail would like to expand their services further north.  They have several adorable and engaging puppies that need to be socialized and trained.  Basic training is done by women handlers in two prisons, but the dogs need to learn how to interact with families and socially.  They are looking for foster parents to take the dogs. You are allowed two other dogs, cats and children. You would have to travel some to Circle Tail, but much of the training would be done in the northeast area. The dogs are between the ages of 6 months to two years.  Another person, Kim Wallick, who has a daughter with mobility issues and received a wonderful dog from Circle Tail, has agreed along with me to help out locally when needed. Veterinarian bills and dog food costs will be covered.


If you are interested at all, please review the information and FAQ’s about fostering on the Circle Tail website at: http://www.circletail.org/index.php?page=foster-a-dog-pup


Kim and I also have brochures we can deliver or mail to you.  Contact us on Facebook. Thank you for helping others as we have been helped.      


CATCHING UP AFTER THE HOLIDAYS

Everyone is so busy after the holidays and now I am catching my breath. I just wanted to update everyone!

Sita is just amazing. Right before Christmas, a private school in Akron named SCOPE contacted me and invited me to speak. Upon finding it would not be a long walk and a short program I decided to take Sita. I was promised around 22 students. kindergarten and first grade.

After mentioning Circle Tail the teacher told me that the students handmade some doggy treats and sold them. The profits would go to them. I was thrilled and off we went.

That dog was wonderful. Since it is so hard for her now with arthritis to get up and down I only had her show them a couple of things she does for me like picking up my keys and bumping me when someone knocks. I talked about what service dogs do and specifically the training at Circle Tail. I then had her lie on the floor and every single child go to go through and pet her. And there were more than 22 kids but that is OK! Teachers were peeking in too! She was so patient and good. The kids mentioned how soft she was. They had many good questions!

When we were done the teacher told me they had collected over 100 dollars and sent the money to Circle Tail., I was surprised but they worked hard at it. I also left my first book - Here to Bump and Bump to Hear with the classroom.I also thanked the phenomenal teacher who organized everything.

So because of my beautiful dog, Circle Tail got a much needed donation right before Christmas and the children learned the pleasure of giving.