Keeping Friends and Family Informed During Your Illness

The following is an excerpt taken from my sister Kae Lynne's Care Page journal. She registered with the Care Page website, created a profile, posted pictures and kept weekly sometimes daily updates posted about her medical treatment and how she was feeling. Her followers were encouraged to send her good wishes, encouraging notes and appropriate animated pictures of support. The instant feedback provided the boost that she needed when she thought she could take no more and her followers were grateful to be informed. Her husband Robert posted many of the updates because she was so weak and then he would read her the much appreciated feedback.

My dear Friends and Family, (written Sunday, November 9, 2008)

I apologize that this has taken me so long to write, but I have been so tired that the task seemed too large. I am done! It is over! I feel like I should be out celebrating, but I am too tired. I left the hospital last Sunday, November 2, 2008. I thought it was ironic because my first chemo treatment began July 2, 2008. All along people have been commenting on my positive attitude. I now know that a positive attitude is not possible without the support system that you have given to me. Please know how grateful I am to each and every one of you that has been with me in this journey. I came home on Sunday to yellow ribbons lining our street and decorating our home. A beautiful banner welcoming me home, as I entered our home after 3 long weeks 1000 Cranes hung as colorful streamers in my family room granting me the wish of health, longevity and peace. I have been so showered with love during this journey that I truly don’t know how to thank you all. My mother has been home with me this week and my sister Jody flew in on Saturday to stay with me this week. The hope will be that in another week my energy level will pick up a little. I am still battling with the nausea and fatigue from the transplant. I did meet with the Radiation Oncologist on Thursday for a consultation to determine if radiation would be necessary. It seems that if Mantle Cell relapses it comes back to where it began, which would be my neck area. We were extremely relieved to hear that it would not be necessary due to the small size of growth I had initially and that it would cause mouth dryness due to the saliva gland being affected. On Monday morning we are hoping that my central line will be removed which truly represents the end!

I realize this sounds silly, but I really want to pass on a couple of practical things that I have learned during this experience. I will save my spiritual learning for another update.
First, AFLAC Cancer Insurance-if your workplace does not carry it make sure you get them to check on it. I purchased this insurance in December of last year and was diagnosed in June. At the time of purchasing this policy I did not realize how generous the payout was and have been grateful the entire time for the financial relief it has given to us. This is a policy that pays directly to you for living expenses while you are undergoing different types of health or disability treatments. The Oncologists have told us that 50% of the population will be diagnosed at some point of their life, don’t let this happen to you without AFLAC Insurance.
Secondly, Be Healthy. Don’t put your health as a last priority. I truly believe that your health needs to be a top priority in your life. If you keep your body healthy your chances of fighting off any disease or accident will be much easier.

-Continued November 23, 2008
I have now been home three weeks and have much more strength. I actually walked ½ mile on Friday. The doctors encourage me to push myself everyday to help build strength. My blood is not building as fast as everyone would like to see. My platelets are staying around 30-36 and the doctors will not have my central line removed until they reach 50. My next appointment will be on Wednesday, November 26th. I can’t wait to have my central line removed to signify it is really over. It’s funny I have been a daily patient at LDS Hospital since July 2nd and now that I have completed my transplant they release you right after your central line is removed. It feels like your getting rejected by an abusive boyfriend.

Thank you for your love and support. Have a wonderful Thanksgiving and count each one of your blessings. I know that this will probably take the majority of my day counting each of you.

Happy Thanksgiving!

All my love, Kae Lynne

www.carepages.com Care pages is a wonderful way to communicate during your illness