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Introduction Patients tell the story of dealing with myeloma better than anyone else. They live the process. They develop ways to cope. The following pages include tips and pointers and messages of inspiration from Myeloma Institute patients. They share their thoughts in the hope that other patients will find them helpful. The patient to patient bond can be one of the strongest. All of us at the Myeloma Institute encourage this special bonding. If you would like to add your thoughts and advice to this booklet, please let us know. We would be happy to hear from you. You can send an email to MIRT@uams.edu, or send us something in the mail: Director of Communications Patient to Patient # 1 1. Expect to be overwhelmed with information and instruction when you first begin. Feeling this is normal but as you become familiar with terms, medications, etc. you will feel more comfortable. 2. Be involved in your treatment process: listen, ask questions, take notes and collect data. 3. I (caregiver) have compiled to this point seven notebooks concerning Charles' treatment these past 8+ years. They are each organized with the same categories: Schedule.....Calendar.....Contacts.....Labs....Tests (CT/PET/MRI), Medications and Physician. This is for my reference as well as answering questions about when we did what and what we did. I update Charles' medication list before each visit, make several copies, and have it ready to give to the clinic APN. 4. It is easier to prevent nausea than to break its cycle. Taking the prescribed medication on schedule is important. If what is prescribed is not effective, there are other options......ask. 5. Being recently diagnosed with multiple myeloma means you'll be benefiting from years of research, study and cutting-edge therapies. Charles and I have seen huge leaps of progress in the treatment of this disease. You have made the wise decision to come to the MIRT in Little Rock as they constantly research new techniques and drugs to find a cure. 6. If you travel via plane, always schedule your flights for the day after your exit visit. Remember, however, your stay may be longer than you expected. This is inconvenient but necessary for thoroughness. 7. As soon as you know your schedule for returning to Little Rock and before
you leave to go home, make your lodging reservations Patient to Patient #2 Aloha I went into high gear, trying to find out how I could help in this process of healing. I think that the first step was my acceptance of the disease and the rearranging my self image to incorporate the disease. That acceptance did not happen immediately, but with time I have come to accept it as a part of me. Since it is a smoldering disease, I am always watchful of recurrent signs. I did not want to be a victim, so I actively participated in my recovery period. I read books about cancer, the healing process, the mind-body connection and exercise. I explored visualization techniques, meditation, and nutrition and read many books to help me direct all my energy towards the task of ridding my body of those plasma cells that seemed intent upon destroying my body. The chemo, in preparation for the transplants, of course, did the usual things. Hair falling out, nausea, fatigue, etc., but a few things that I did not expect happened too. My taste altered dramatically. It interfered with my robust appetite and enjoyment of eating and cooking, further compromising my nutrition. I was no longer interested in sex. Ultimately I also had several major complications including an attack of a “hepatitis-like” syndrome between my transplants which was diagnosed as Hep C in 1998. I had Porphyrea Cutaneous Tarda after the 2nd transplant that required bleeding on a regular basis. This was done by my husband while we traveled around in our RV seeing those parts of the country that were closest to Arkansas. I had Acute Hemolytic Anemia which occurred during a trip to Mexico and required a splenectomy. Through all of these episodes I focused on the goal of getting well, never doubting for a minute that I would succeed. My husband was always at my side encouraging and supporting me with unconditional love. He went with me to all my appointments and helped interpret some of the things I may have missed. Without the mainstay of his support this journey would have been much harder. My family and friends were supportive and were always interested in my progress, so we tried to keep them informed. I have had two recurrences and always Dr. Barlogie has had an answer. The medications and chemo have their problems, but they have allowed me to have a full and good quality life, productive and joyous. I now am more conscious of the present. I smell the roses and note the fresh air off the ocean. I am more compassionate and less judgmental. These and other changes in my outlook on life have changed, I hope for the better. It has not always been easy. Actually sometimes it has been rough going, but I never once doubted the outcome, a life of good quality. I have lived to see our two children marry, our two grandchildren born and many other wonderful events of life. I am active in the bridge community here in Kona, grow orchids and otherwise live a fulfilled life. Has it been worth it? You bet it has and I am looking forward to many more years of the good life here in Hawaii. The journey you are about to embark upon will have many choices. No matter
what they are or what you choose, always remember that you are an integral part
of getting well. Great as they are, the doctors, the nurses, the medications,
etc., they cannot do it alone. You must be right there with them, with a
positive attitude and doing what you can to control this disease. And never,
ever lose sight of your goal, to be in complete remission. I was diagnosed with myeloma in July of 1991. It was very discouraging. The 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 MM 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 MM (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 in1991… 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. Patient to Patient #4 If you have Myeloma, my family and I feel that this is the very best place to be for treatment. This conclusion came after much research. Dr. Bart Barlogie is Director of the Myeloma Institute for Research and Therapy. His staff of outstanding doctors, nurses, office personnel and volunteers gives out huge helpings of hope. Remember that together the doctors review each patient treatment for you as an individual. There is much for the patient to learn but there doesn’t seem to be a need to jump too far in the future. They are making advancements every day – remember to take it one day at a time. Perhaps the one thing that has helped me the most on a personal level is The Myeloma Support Group. They meet on Wednesday at 5:00 pm to 6:30 pm at the UAMS Family Home at 4300 W. Markham (across from UAMS). Sally Tanner and staff are wonderful at answering questions concerning this group (501-978-2900). Lenore and Harriet, social workers, do a fantastic job of leading the group (501-686-8145). Sharing your thoughts and concerns with other patients is very helpful. They are willing to tell of their journeys and answer many questions. It is so encouraging to talk with new friends that have been in remission over a dozen years! The Patient Information Guide is a very useful booklet provided by the Arkansas Cancer Research Center. Maps are available and everyone at UAMS seems willing to help you find your way around. Wear comfortable clothes and shoes - there will be some walking. There will be waiting for appointments and tests. Take something to snack on, something to read, an activity or visit with other patients. Remember that you are waiting for the best care available – it is certainly worth the wait! Keeping a journal may be helpful. Make a list of questions. Be involved in
your care. Let your attitude be gratitude – there are blessings in each and
every day. Patient to Patient #5 “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 an MM 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 (the 10th floor library has tape recorders with tapes they will let you borrow just for this purpose). Ask questions, lots of questions. Where do you get the questions to ask? You can get the most up-to-date information on MM in the library on the 10th floor, where they provide computer internet access and preprinted material. To get information prior to arriving at MIRT, I can suggest these websites: www.multiplemyeloma.org and www.myeloma.org. 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 MM, 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. Patient to Patient #6 Understand your disease and the treatment protocols for the therapy you are prescribed. Educate yourself about your blood counts, blood chemistry, as well as all of the diagnostic tests you will be undergoing and their significance in your treatment. Keep copies and read them so you understand the process your body is going through. Communicate with the staff - nurses, doctors, and techs. Myeloma is a part of their daily lives. They are knowledgeable, experienced, and they want to help. Be part of the team. Don't hesitate to ask questions if you don't know or don't understand something or have any doubts. Also, talk with other patients, but keep in mind that every patient is different and everyone's experiences will vary. Attend the Wednesday night support groups at the UAMS Family House -- they provide wonderful support and camaraderie among patients and caregivers, as well as provide a wealth of information. It is a great feeling to make friends and reunite over time and exchange experiences. Friendships with other patients take place and are very special; they help you stay connected between treatments. Avail yourself of all resources available, in particular the library on the 10th floor, the social workers/facilitators in the Behavioral Sciences Dept., etc. Research and understand the drugs that you will be taking and their side effects (all this information is available in the library on the 10th floor). Be familiar with the routine testing schedules. Most importantly, be patient and be understanding of the fact that delays and changes will occur and that everyone is trying to do their best to accommodate you and other patients. Always have water, healthy snacks, and reading material with you. Develop a positive attitude. Be assured that MIRT is the best place to be if you are a patient with myeloma. Acquaint yourself with Little Rock. Make it your home away from home. People in the community are very sensitive to the needs and challenges of patients and go out of their way to welcome you. Attend the monthly complimentary dinners at the Oasis Retreat Center. They are a pleasure and also provide much needed support, camaraderie, and information. Work closely with and take comfort in the assistance and expertise of the insurance personnel -- they will get things done! in my case, I would not have gotten my 2nd transplant covered by my insurance company were it not for the MIRT insurance staff! Take care of your body. Exercise - walk, stay active, as much as possible. Keep yourself well nourished and drink plenty of water. Make sure your nurses/doctors provide you with a good explanation of each phase of the treatment and what you may expect, i.e., fatigue levels, effects on your blood counts. Things will change as your treatment progresses; each round of chemo may be different. It is very important that discharge instructions are carefully explained and that you particularly understand orders concerning medications and their significance. The transition from leaving Little Rock to coming home can be crucial if these are not carefully explained and understood. For example, I was to start growth factor shots immediately upon arriving home (day 6) after chemotherapy. Although I knew I was to start a particular shot, and delivered the discharge orders to my local oncologist, I was not scheduled for the shots for two more days. I did not equate growth factor with neupogen at the time, nor did I understand the importance of those shots as ordered. As a result my white blood cell count plunged, my son happened to get a cold, and I ended up in the hospital with pneumonia for five days. I feel blessed to have found MIRT. Tidbits of information I have learned as a patient… First and foremost, it is critical to have a caregiver with whom you are very close and who can truly look out for your best interests. Not only do they provide comfort and support during the endless procedures and during times when you feel lousy, but they also hear and see things that you as the patient miss. I was sedated during chemo and as a result l did not hear exactly what the nurses were saying regarding my care and available options. However, my wife did and frequently responded on my behalf after we had discussed the issue. I honestly cannot imagine how anyone could go through what I have experienced in the past year without a close caregiver. My relationship with my wife throughout it all was a true partnership – from agreement about what I would eat to making sure I got to the hospital on time in the morning. Basically, all I had to do was be the patient – she cooked, maintained the apartment, shopped, drove, communicated with friends and relatives, interacted with the nurses, techs, and doctors, and provided me with endless love. I also cannot overemphasize the importance of dialoguing with other patients. This is as important as reading the manuals, protocols, and other information provided by MIRT. Other patients represent the human side of myeloma treatment. You soon realize that you are one of many enduring the treatment protocols for myeloma – some are ahead of you, some not s far along. It feels good to share your experiences and to learn from others. And, believe me, you do learn – everything from what worked for some with constipation to where to eat in Little Rock. I also found the Wednesday evening support groups hosted by Harriet and Lenore [myeloma social workers] to be extremely helpful. Similarly, this is a learning and sharing experience. What I perhaps found most gratifying was sitting and talking to new (or not so new) patients who were overwhelmed and scared or who had just received bad news. Yes, patients need to talk to doctors and nurses and loved ones during such times, but other patients also play a critical role in helping you to cope and get through the tough times. All patients, when they are able, should attend the Wednesday evening support group meetings. These meetings should be viewed as an integral part of one’s treatment. Patients need to read up on myeloma and myeloma treatments so that they can have good interactions with their doctor as well as other patients. The 10th floor Education Center is a fantastic resource and every patient should try to take advantage of it. I do not subscribe to the “doctors always know best” viewpoint – they are not infallible. I believe that your treatment will work best if you view your relationship with your doctor as a partnership. I believe that patients who are reasonably well informed may not suffer the same degree of anxiety and, at times, hopelessness as those who simply place their fate in the hands of their doctor. It is important to keep in mind that no two days of cancer treatment are the same. It’s true! A particularly bad day never seems to be followed by one just as bad or worse. I didn’t believe this at first, but came to appreciate this bit of wisdom as time went on. Patients shouldn’t worry too much about the future. The MIRT staff is incredible at fixing problems that arise, including making you feel better. Again, remember that you are not in this fight alone. One way that I coped during days when I felt lousy or was particularly
drugged up was to lie in bed, put on headphones, and listen to NPR or a Bernie
Seagal tape. During such times, watching TV or a video was not a good diversion
– I simply felt too lousy – sometimes even to sleep. However, for me, something
about lying there with a headset on listening to something that did not require
a lot of concentration seemed to help. Often, I would do this for hours on end.
I often fell asleep with the headset on. What is important is that each patient
tries different diversions until he or she discovers what works best. Patient to Patient #8 Fear is the psychological feeling that traps us from moving forward; however, when I was diagnosed with myeloma I began to learn how to overcome this. Sounds easy, but with lots of practice, at least in my case, I forced myself to move on and go forward, instead of backwards. This has proven to me that you have to leave all the negative things behind and move on. There is a great deal of optimism in Little Rock. The Little Rock team encourages the patient to become part of the process – that really helped me. I suspect that the conclusion is that you can overcome fear, with work and with help from all those around you. Social workers are an important part of the cancer process and should not be
over looked. Their involvement is critical and gives patients a good starting
point. Patients can feel so lost and confused. The social workers help guide
patients through the process.
About Multiple Myeloma // About the
Myeloma Institute // Becoming a Patient
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