Staying Well Informed About Your Condition

 

“I have what?” I asked in amazement. How could I have cancer? Other people had cancer, not me. And multiple myeloma – were they speaking a different language?

I am currently a patient here at the Myeloma Institute for Research and Therapy (MIRT). During my many visits, I have gained much perspective as to the path which a myeloma patient may travel while being treated. I hope that by sharing some of my experiences with you, your journey towards a remission and an overall better quality of life will be somewhat easier.

First, let’s talk about FRUSTRATION – it is part of the disease and should not be part of the therapy. How do you overcome frustration? Relax! Though extremely hard under trying circumstances, do your best to always remember that you are in the best hands with people that truly care. Your doctors, nurses and the entire staff at MIRT are committed to making your life more manageable and to finding a cure for multiple myeloma. You’ve already made the hardest decision you’ve had to make thus far: “where do I go to get the very best, cutting edge treatment?” Finding your way to MIRT was the best thing you could do to beat this monster. So, relax, let your doctor worry about your treatment and all you have to do is to concentrate on getting better.

Due to the vast number of patients being treated at MIRT, it will soon become quite clear to you why little blips may sometimes occur within the system (such as scheduling your routine visits, getting test results, etc.). Once in a while schedules get confusing, departments at first are sometimes difficult to find, and you may run a little bit late. What do you do? Relax. Stay in communication with those involved and let them know where you are and what your needs are; also, any staff or volunteers you see along the way can direct you to the correct department. Again, you are here to get better, not frustrated.

When you see the doctor, be prepared – do your homework. Have all of your questions written down. Consider taping your first appointment. Ask questions, lots of questions. Where do you get the questions to ask? You can get the most up-to-date information on myeloma in the library on the 10th floor, where they provide computer internet access and preprinted material. The more information you have, the better questions you can ask to help you understand your situation.

Be sure to gather quality information – many publications you may find in public libraries are obsolete – there are so many changes in the treatment of myeloma, that these books are outdated the moment they are printed. Get the facts, then relax! Remember, it’s the doctor’s job to worry for you; your job is to get well!

For my husband and me, we look forward to our visits to MIRT. We meet some pretty remarkable people and feel so much love from the staff (who want you to get well and treat you with respect and care as they would a member of their own family) and other patients. You, too, will meet many new friends – some will have stories sounding very familiar to your own. However, it is important to remember that this disease is different with everyone. There are different therapies which are individualized for every patient. What one therapy does or does not do for one person has no bearing on your outcome. Stay calm, enjoy the company and relax!

In time, you’ll want to learn what your tests mean and to ask for copies of the lab results. You may want to track your progress. Knowing a few of the main ingredients which help your doctor control your progress is helpful, however, don’t get too carried away with this information. It should be used as reference material only. During your treatment and/or subsequent visits to MIRT, if you have a question – ask it. If you have a concern, do not be afraid to address it to either your doctor or his nurse. It is your life; you are entitled to guard it well. And remember, the patient must have patience. If you are waiting to see the doctor or waiting for tests for a long period of time, keep in mind that the patient in front of you is just as important as you and in turn, you too will receive the same consideration.

During your treatment, it is very important to coordinate your home health care treatment with your local physician with your doctor at MIRT. It is critical that your home physician understands the enormity of processing the information necessary to follow your doctor’s orders from MIRT. My suggestion is to ask your doctor at MIRT to give you a good contact number for your home health care physician for any questions that may arise while you are being treated at home. And again, be patient.

Know you’re not alone – the “family” at MIRT is there for you. Once you’re home, you might try a support group with the Leukemia/Lymphoma Society (fellow hematological cancers) if that’s for you. I find a great deal of support from my family and friends. My family actually put together a framed letter of encouragement, signed by every member; it helps me a great deal – knowing I’m not in this alone. Let others help you – most people don’t know what to do for you and they just want to help in any way they can. Let them – it helps them and it helps you. Rely on your family and friends to help and support you – don’t try to go through this alone.

I found it helpful to keep my family and friends updated on my progress (especially during stem cell transplant) through a free website where you can easily set up your own webpage (believe me – it’s very simple) and post your thoughts/progress as often as you like. The people reading your posts have the option to leave you a note as well. The website is: www.caringbridge.com.

At MIRT, we all share one common bond: our will to survive. Without that will, we would surely be lost. Don’t focus on the negative – what good does that do? Take that energy and put it towards fighting this beast. Know that you have found the best facility for treatment, so spend your time doing the things you’ve always wanted . . . and be happy that we were given this time to enjoy our every day! I feel blessed, with every day, a new adventure. Realize, too, that you CAN live with cancer and that many good things will come.