Today, 8/8/16, I'll begin the next step in my treatment for Multiple Myeloma (MM). It's likely that I won't be able to be in direct contact with you very often, if at all, for a while, so I've created this Caring Bridge page to give you a place to go to get updates about how I'm doing and information about what's ahead for me. I've asked my friends Beth, Karen, and Stewart and my sister Yuko to provide updates on this page, so for the time being, please come here for information. I've been told to expect that I'll be sleeping a lot and will have very little energy, as my body will need extensive time to rebuild and heal after the stem cell transplant (more on that a little later). I promise that I'll be back in contact with you or post to this page as soon as I’m up to it. :) I expect to be in the hospital for about three weeks. Please be sure to read the section below titled "Important Information Before You Visit" if you're thinking about visiting.
♤♤♤i's been a challenging road since being diagnosed last November, and I would not be able to stand strong today if it weren't for your support, care, and love. Thank you so much for everything that you've done for me! As someone who has made a career of giving care and helping others achieve health, it has been a humbling and profound experience to put my care in the hands of others, to receive help, and for that I am so very grateful. There are many people to thank...please forgive me if I've forgotten to put your name here...you are in my heart!
♡♡♡A special thank you to: my dear friends Stewart, Beth, and Karen; my sister Yuko, my brother Yuchi, my sis-in-law, Kim, and my beautiful mom; Dr. Regan and his staff, Dr. Brown, and my acupuncture partner Cynthia ,Yu-ko; my friend Heidi; Dr. Gilman and the wonderful nursing and support staff at Presence St. Joseph's Advanced Center for Care (Jenet, you're the best!); Shonie my manager and her sweet husband; my St. Joseph's co-workers Rita, Maggie, and Ketley; friends in my neighborhood - Ann, Amanda, Monica, Harry, Emanuel, and Gurunischan; my mentor Dr. Chow, Mrs.Chow, yolanda, Sandra, his secretary used to be; all of my amazing patients from my acupuncture clinic (Mrs. Burkowski, Tania, and Sheri, Tom. & Dale, David, Pat) who visited or sent kind words of support; friends Marion, Brad and Mimi; Jennifer from the salon, my friends at BNI-a network organization (Felice, Dani, Janet, cecily, Alicia ), and other kind people who have helped me along the way including Raphael and Jesus. I most sincerely give thanks to my Lord, Jesus, for the faith and strength to keep going at times when it feels so difficult, and I thank him for putting all of you in my life...I am so very blessed!
♧♧♧START OF MY JOURNEY Last November, after several months of fatigue and pain in my back and ribs, I was urged by Stewart, my dear friend of 20 plus years, to go to ER. 1MONTH before my diagnosis, new PC concluded as stress due to working too much. Yan mnurse practitioner refused my request for a simple blood test. By November, aft my family in Japan, I was feeling worse than l, and at Stewart's urging, went to the ER. I never imagined how life would change that day...there's nothing that could have prepared me to hear the word cancer. My doctors told me I had Multiple Myeloma...a relatively rare cancer of the bone marrow which was confirmed through blood tests and later a bone marrow biopsy. Bone marrow is the soft, spongy tissue inside bones that makes blood cells. Bone marrow also contains our stem cells. The pain I was feeling were tumors in my rib and one vertebrae in my lower back and my ribs. Fatigue was due to unhealthy blood cells that couldn't produce oxygen my body needed. My kidneys were functioning poorly, too. Certain cancers - including Myeloma - keep stem cells from developing normally. If stem cells are not normal, neither are the blood cells that they make. Without healthy blood, I don't have the white blood cells to fight infection, the platelets to clot blood properly, or the red blood cells to carry oxygen throughout my body. A stem cell transplant will give me new healthy stem cells, and the new stem cells can make new, healthy blood cells. Yes, that would be good!
◇◇◇MY TREATMENT SO FAR Under the wonderful care of Dr. Gilman and the nursing team at Presence St. Joseph's Hospital and Advanced Care Center, I've undergone chemotherapy treatment 2 times each week (three weeks on, one week off) every month since December 2015. The first few months and type of chemo were veryhard on me and the chemo wasn't effective. Lost over 20 lbs by then. In fact, a follow-up bone marrow biopsy my cancer had significantly progressed. In April, Dr. Gilman started me on a new type of chemo treatment, which my body tolerated much better and which was, thank God, very effective against the cancer. My vital signs and blood work are excellent now - all showing normal and healthy numbers! I am on remission!
◇◇◇WHAT'S NEXT After successful chemo treatment, Dr. Gilman recommended the next step in my treatment plan - a Stem Cell Transplant. This procedure gives me the best possible chance for achieving full remission. I chose to have the transplant done at the University of Chicago under the care of Dr. Todd Zimmermann. The type of stem cell transplant I'll undergo is an Autologous Transplant (also called an 'AUTO transplant') which means that my own healthy stem cells will be given back to me to rebuild my bone marrow. The basic procedure is:
- Collecting My Stem Cells through apherisis, which we did over the last two weeks
- Stem Cell Treatment which is two days of intense chemotherapy in the hospital to kill off any possible remaining cancer cells (8/8-8/9)
- Getting My Stem Cells Back which is done through an IV transfusion of my healthy stem cells back in my blood (8/11)
- Recovery which includes taking antibiotics and other drugs, getting blood transfusions if needed, and being monitored by the transplant team to watch for any possible complications (8/11 - 8/29)
☆☆☆IMPORTANT INFORMATION BEFORE YOU VISIT In the weeks following the transplant, I will have little, if any, capability to fight off infection. Several people have asked about visiting me while I'm in the hospital, so I wanted to share with you some important things to know about visiting.
I'll be at:
University of Chicago Medical Center, Center for Care and Discovery (CCD) 5700 S. Maryland Avenue Chicago, IL 10th floor, Room 10-054
☆☆☆MOST IMPORTANTLY...PLEASE VISIT ONLY IF YOU ARE FULLY WELL! If you've been sick or not feeling good in any way, or if you've been exposed to anyone who has been sick in the last three days, please wait to visit. We can always catch up by phone instead. :)
- Please be sure to carefully wash your hands when you enter my room. Doctors have said it's best to have NO VISITORS IN THE FIRST WEEK ( 8/8 - 8/14). If that timing changes, we'll post that on this page as an update.
- No children under the age of 12 are allowed to visit due to the possibility of having been exposed to someone else who may be sick.
- Visitation Hours for me are between 10 am to 8 pm.
- Doctors have suggested that I keep visits relatively short (30 minutes or less) as it will be hard to tell how I'll be feeling, and the doctors have said that I will need significant rest.
- Due to the risk of infection, I am NOT allowed to have fresh flowers, plants, or fresh fruit, as they pose a significant health risk to me after the transplant. I will be happy just to see you!
♡♡♡THE ROAD AHEAD Once I go home at the end of August (8/25), I'll have a continued period of recovery for several months. During this time, I'll have limited contact with people due to having a suppressed immune system. Because Multiple Myeloma is not curable in the way some cancers are curable, remission is the best possible hope. Remission is having no signs or symptoms of cancer. After the transplant, I will continue to see my doctors and have tests to watch for any signs of cancer or complications from the transplant. There is a possibility of having a second transplant if needed, but we won't know that for some time.
☆☆As I mentioned earlier, my concerns and symptoms were dismissed by my (former) doctor for over six months. My advice to everyone is to be your own best advocate...no one knows your body better than you do, and if what one doctor tells you doesn't feel right, then see another doctor. Don't take NO for an answer even if that means changing doctors. Please don't wait to see a doctor if you feel you need to or don't agree with the doctor's approach.
♡♡♡THANK YOU AGAIN...from my very sincere and hopeful heart, every one of you is making my recovery possible. Thank you for being my lifeline of hope and faith, of courage and strength! Wish me well on my journey, and I would love to hear from you on this page if you're up for sending a quick note. All prayers welcome!!