Journal of Hope:Deborah Tiusanen– The Unplanned Chapter

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After 27 years of teaching, I looked forward to retirement. About seven years back, we purchased a new home on a small Christmas tree farm. Being very active by nature, I cared for the trees, yard, and large vegetable garden. My husband retired early and cared for our granddaughter while I finished working. She only had one more year to go before kindergarten when I retired.  We had plans to take short trips and I looked forward to doing volunteer work and leisurely caring for my yard more as a hobby. Dreams to start a new chapter in my life were finally starting to happen. As it turned out, the name of the chapter was different than what I had intended.

One year after retirement (June 2015), I had my annual checkup and was told everything was fine. In August, I found myself suffering from jabbing pains in my ribs. I went to the doctor a few times, but was told no problems could be found. The pain continued to get worse and the jabbing pains that had healed returned along with new ones. After a visit to an orthopedic doctor and physical therapy treatments, an MRI was ordered. It was November by then. The MRI showed that I had cancer. A number of other tests were ordered until an oncology doctor was able to pin point the type of cancer I had, multiple myeloma. By then, from all of the fractures and breaks in my spine and ribs, a great deal of damage was already done. I had lost 7 inches from my height and about 40 pounds. My spine bowed out like that of a person with osteoporosis, my chest caved in from a break in the sternum, and my entire rib cage sagged into my hip area. Pain from these fractures, breaks, and deformity is now a daily problem. The busy lifestyle I was used to was over. This was the beginning of my life with cancer.

I was referred to an oncologist and given a treatment plan. I was in shock after being told I had cancer. While I was glad to know what was causing the pain, I never thought it would be cancer. During my life up to this point, I was extremely healthy and careful about the foods I consumed. I grew much of the fruits and vegetables I ate. 

 After the diagnosis was made, I went to an infusion room and was given three drugs. I did this for about 9 months and then learned that the drugs were not working any longer and I had to start on different drug therapy program. I was given a choice of Revlimid and Decadron or Revlimid, Decadron, and Valcade. I chose the three drug therapy, but after two tries, the three drug therapy was too strong for me and I was moved to the Revlimid and Decadron. This therapy seems to be working for now. Each month I visit the oncologist to review my bloodwork and determine the best therapy for the new month.

Having cancer has totally changed my life. We had to sell our home and move to an adult community where maintenance was taken care of so my husband could help take care of me. We could no longer care for our granddaughter. I am in constant pain from the damage done from the fractures and breaks and need to take pain medication in order to stay somewhat comfortable. My activities are limited because I am not able to be in places with many people due to the fact that my immune system is very weak from the chemo drugs and I am not able to fight off infections. I am also not able to participate in many physical activities because of the damage and pain. I try to keep a positive outlook and invite friends for visits. I also continue to play the piano, cello, and accordion. I purchased a small accordion so I could lift it. Playing music has kept me going and filled in a big void. I invite other musicians to my home to play duets and trios with them.

Standing and sitting up for long periods of time are challenging. I was given exercises to do daily to strengthen my core muscles. I was also fitted with a brace to help support my upper body. I am able to go for walks and be upright for longer periods of time with this support.

Keeping on weight has been a problem. The organization that I receive treatment from does not offer nutritional counseling for cancer patients. I found PearlPoint Cancer Support through The Leukemia & Lymphoma Society. They have been so helpful in offering suggestions to alter my diet in order to add weight. The person who has been helping me asks questions and then provides resources to help with concerns.  She also helps me add calories by suggesting things I can add to the foods I already eat. She is generous with her time and doesn’t rush our sessions. I was so happy to find this resource because I knew I needed help with my diet, but didn’t know where to go to get help. After having cancer for a year, I thought it was too late. Now I know that I have support in the area of nutrition when I need it and that it is not too late to improve my diet and make changes.

Time will tell where things will go. I do the best I can with the help of God to get though the issues of each day. I am grateful for my doctor and the medications. I am grateful to PearlPoint for the nutritional support they have provided. I am grateful for the time I have left to see family and friends and enjoy life to its fullest with the energy I have left.

As a newly diagnosed patient with cancer, ask lots of questions. PearlPoint is a good resource. Go online and look for information about your specific type of cancer. Connect with others and stay positive.

 

At PearlPoint Cancer Support, we offer free one-on-one nutrition consultations. Our Nutrition Educator, a registered dietitian with experience in oncology nutrition, can help you navigate your unique cancer journey. Learn how your PearlPoint Nutrition Educator can advise you. To learn more and to request a consult, visit My PearlPoint.