Providing Encouragement to Other Patients

 

I was diagnosed with myeloma in July of 1991. It was very discouraging. The diagnosis was not good and the prognosis was worse; my tumor load was 90% and I was not responding to conventional chemotherapy at my local oncologist’s office. How I found out about [the Myeloma Institute] is a miracle in itself. I entered the Total Therapy I protocol in August of that year. I went through tanden transplants (marrow and stem cells) with my 2nd transplant occuring in July of 1992. I have been in complete remission since, however I remain on Interferon and Zometa as maintenance therapy. I return to [the Myeloma Institute] about every 10-12 months for a checkup.

I am most willing to help in any way possible…I have let my local oncologist know that I am willing to talk with other myeloma patients any time, and I have visited with several across the state of Montana. I have talked with several patients who were contemplating going to [the Myeloma Institute] for treatment. I have expressed this willingness because I know how VERY IMPORTANT it was to me, how helpful and reassuring it was to meet SOMEONE, ANYONE, who was either going through the treatments or had lived more than 3 weeks with myeloma (I was that scared!). I believe this is most important for newly diagnosed patients…the fear and anxiety of a diagnosis of MM cannot be described… I believe all (or most) patients live a “living nightmare” upon diagnosis…been there, done that…worn that T-shirt.

I won’t go into a lot of detail but I can say that I try to encourage other patients (as many encouraged me!)…I always tell them, as some told me in 1991…

  • “You are in the best place”…stay positive despite what may lay ahead in your particular protocol (or what you think may lie ahead). 
  • Listen to the doctors, write EVERYTHING down that you want to ask during your clinic visits. 
  • Do not be afraid to ask ANYTHING. 
  • Seek out other MM patients, their stories, treatments options and experiences can leave one with a positive mindset, adding reassurance in one’s “journey” (the support groups are wonderful…they weren’t available in 1991…our support groups were held informally in the lobby of the Guest House Inn!!). 
  • My suggestion is to stay POSITVE and DO NOT think that just because other patients are having this particular type of reaction to the chemo or other “particular problems” that you will experience the same reactions …everyone is an individual and the various drugs affect everyone differently. 
  • Hang on to your Faith, whatever you perceive that to be, AND always “select” the treatment option you feel most comfortable with (i.e. the different protocols, herbal treatments, meditation, etc.)….if one is comfortable with one’s choice of treatment, staying positive seems to be a little easier. 
  • Stay close to your family, COMMUNICATE with your care-giver but remember he/she is also struggling in assisting and caring for you….there are hurts and fears on that side of the track too…BE OPEN with each other and COMMUNICATE…it is vital to one’s physical, mental, emotional and spiritual state of mind. 
  • Always remember that tomorrow will be a better day even though that may be very hard to see at times….laugh when you can, and cry when you want; try to remain positive every day and look at each chemo session, treatment, blood test, X-ray, biopsy and MRI as one more victory in your experience, one less “ordeal” to go through….grit your teeth and fight like hell!!!…get mad if you want to.

I would also suggest that when patients are in Little Rock and are feeling “up to it” (physically and emotionally) they should take in the “sights and sounds “…Little Rock has many fine restaurants, theaters, shopping areas etc….take a drive (just to “get out of there”)….it can be very satisfying to the mind and heart just to know the world is still out therein all it’s splendor. And if you have gone through the treatment(s) with another patient, try to schedule your follow-up visits at the same time with that person….make the trip to Little Rock together, it will make your visit something other than just a bunch of medical tests.