My journey with Multiple Myeloma

This is my story about living with Multiple Myeloma. It is a story I have been needing to put down for quite some time now, but was not ready yet as I have been so overwhelmed with it all. I have read many blogs on the diagnosis and treatment for MM, yet what I have not really seen is the emotional impact it has made on the people diagnosed with this difficult and painful cancer. After 6 months of living with MM and still not knowing where the future will lead, I have found that the emotional toll is heavier than many of the other symptoms, and maybe by sharing my journey I will be able to help others on theirs. Here is a little overview of how I found out I had MM.

In May of 2012 I moved to Tempe AZ from Texas to start esthetics's school (skin care, facials, etc).

I have had back problems for years. As a massage therapist I have attributed my problems to my job. I have friends who I exchange treatments with and so I received plenty of massages, acupuncture and chiropractic adjustments. However, by the time I started school the pain in my back had become so severe that it was really interfering with my life. Big suitcases had to be carried to school every day, and I was unable to do so. With the help of friends and fellow students I was able to continue school, but it became increasingly more difficult. I went to see several doctors and ended up in the ER a couple of times, but other than diagnosing me with severe anemia they could not find anything wrong. At my first ER visit I was told by the doctor that he would only do an x-ray, since cat scans were so expensive and insurance agencies frowned at their "overuse". As I found out later, the tumors they found on my spine were only able to be detected by cat scans, something that could have allowed my treatment to have started months earlier, never mind avoiding months of agony. I ended up with a bad lung infection that would not go away, but x-rays showed my lungs were clear, so I was sent home again.

At the beginning of November, on a Saturday morning, I decided enough was enough. Somehow I had made it through school. The only thing left to do were my clinical hours, and I was in no shape anymore to be with clients. Sometimes my instructors found me on the massage table, hardly able to move and completely exhausted. Because of MM I had severe anemia and I was completely worn out. I could hardly climb a flight of stairs anymore. On that Saturday morning I dropped my daughter off with friends and went to the Emergency Room. I decided I was not leaving until they had given me an answer. They took cat scans of my chest and drew more blood. My friend and I were sitting around, I had been given a nice dose of morphine, so was finally mostly out of pain, something that had not been the case for many months. When the doctor came in after about an hour he looked at me and before he even sat down told me I was anemic and had cancer. I looked at him and asked him if he was kidding. Surely a doctor does not come in like that and announce a cancer diagnosis. Unfortunately that was the only way this doctor knew how to do it. He looked at me and said in a serious tone that he would not joke about something like that. He told me I needed to be admitted immediately, that I had 3 tumors on my spine and that one of them was so large it had gone into my spinal cord and might have me paralyzed at any moment. I later found out that I was a ticking time bomb and that I was very lucky not to have been paralyzed.

Things after that became quite blurry. Needless to say I completely fell apart. Here I was, a 44 year old woman, mother of a 7 year old girl, wife of a husband who lived in another state. I told the doctor I could not go to the hospital as I had nobody to take care of my daughter. I needed to call my husband and he had to fly in to take care of us. Making that phone call was the hardest one I have made in my life. My husband was enjoying a trip in the hill country with some friends, mountain biking, and I had to tell him to come home to take care of his wife who just found out she had cancer. I have seen movies like this, I have read about it, yet surely that was never going to be me. I was a very health conscious person. I had tried to do all the right things. I was not overweight, I did not eat fast food, I exercised, I had even been vegetarian for 7 years. How could this happen to me.

The doctor reluctantly send me home, after having me sign all kinds of paperwork stating if I chose to leave I did so at my own risk and could risk paralysis or even death. I promised to go to my doctor first thing on Monday and check into the hospital. This is what we did when my husband arrived. We went to the hospital and for the next 5 day every possible test was done on me. Several different Cat scans, with different dyes pumped into my veins, a two and a half hour MRI with sound so loud that I could not have gone through it without the significant amount of drugs they gave me. I received a blood transfusion and was on morphine around the clock. I can’t really remember much of that time, only that I was happy to have my husband there with me and friends visiting and caring about me.

People’s good thoughts and prayers became very important to me. My friend kept people updated through face book and I felt lots of love coming my way. Reality of what was going on hit more when I got home and we were beginning to talk treatment. Because of where the tumor was at, they were afraid to operate out of fear of paralyzing me, so radiation was the immediate solution. The diagnosis of my cancer, Multiple Myeloma, is a blood cancer that affects platelets. Looking back it is amazing that no doctor had come up with this diagnosis based on my symptoms. Symptoms of MM include: bone Pain, often in the spine and ribs, both of which I suffered from the most, anemia, weight loss, fatigue, broken bones, infections (hence my lung infection that would not go away). I don’t know why it took doctors so long to come up with the diagnosis. It certainly could have prevented a lot of pain and discomfort, and allowed the MM to be kept from spreading as much as it had. One thing I learned is to be more assertive with doctors. If a person feels something is not quite right go and insist on tests to get it checked. Three years prior I had told my gynecologist that I felt my bones were weak and I wanted it checked. He simply laughed it off, told me I was too young. Had he known that bone pain and anemia (which I already had) were part of MM, he might have saved me this very tough road I find myself on today.

One thing I need to state here that, though I knew I was going to need conventional treatment due to the progression of my condition, I was scared to death of Chemotherapy. That in itself felt like a death sentence. For years I had read and studied everything that stated that chemotherapy was not good for the body and that the results were severely lacking. I had gone to a naturopathic school and my whole believe was of healing the body through herbs, diet, and rightful thinking, as well as strengthening the immune system. Chemotherapy seemed to be doing the precise opposite. I had often stated that if I ever had cancer, I would never take the route of chemotherapy or radiation. A very dear friend of mine was a naturopath and he suggested I take the conventional route because my cancer was so far advanced. I did not have the energy to try the natural route. I was taking many medications for my pain and my anxiety and simply did not feel strong enough. I knew I had to change my mind about the chemotherapy in order for it to work for me, but my education and even my childhood very much got in the way of that.

I had been raised by a Christian Science mother who very much believed that disease did not exist and was simply the result of wrong thinking. That influence on me, made me believe that if we were sick it was something we created through our “wrong” thinking, and so it was 100 percent our responsibility to turn it around. With my condition and physical weakness this was a lot to take on. Needless to say that my first two rounds of chemotherapy went horrible. I lost a lot of weight, was nauseous all the time and battling fevers on a daily basis. My body seemed to be rejection the medicine completely and there were plenty of times I did not want to be on this earth any more. The journey simply seemed to be more than I could handle. Though prayer was coming from all over the place, my own mind was mostly filled with Fear and Anxiety. After my first two cycles the doctor said I probably had a reaction to Revlimid and put me on something else. By this time I had also decided to change my way of thinking about chemo, in order for it to be able to help me. My numbers were coming down very slow and the side effects were certainly affecting my quality of life. Since the doctor changed my regimen I feel much better and my numbers have been steadily coming down. Not as fast as my doctor would like to see, but at least it is going into the right direction. I have read many people who only need about 4 cycles, so far it looks like I will have to do at least 8. Well, this is a short overview of where I find myself today 6 months after finding out I have cancer. Next time I would like to talk more about what this has been doing to me emotionally, the ups and downs and how I try to deal with them. Living with cancer is a challenge to say the least, but I do believe it is possible to still enjoy life. This might mean changing your perspective, taking medicine, talking to someone or writing down your feelings. What ever it is you need to do to keep your Peace it is worth doing. I am still very much in the midst of trying to figure out what works for me, as many of my days and nights are filled with anxiety. I would Love and Appreciate any responses to help me get past the fear part and into the healing and living part of this disease.

Thank you for taking the time to read my story. Sharing this feels healing to me, so it must be right....

Hi, I read your story; started to tear up when I got to the part about the doctors, I know they are just humans;;; but they must first know how to listen before they can help. How high are your numbers? mine was at 5.8 m protein when this started. What type of therapy are you on, dex , velcade and revlimid on the 28 day cycle. I started with Dexamethason and velcade on a 28 day cycle 2 times a week for 3 weeks with 7 days off at the end then later had revlimid added. I think I probably waited to long for the stem cell but time will tell, for now its all good (mostly). I have had my prayers answered, I have become a grandpap and have held him and sang to him and he rested, my word I feel my life is complete. My son and his wife were away to the store, when they came home he ask if he had cried , he had not, each time he started to fuss I sang the mockingbird song and he would calm down. The warm feeling made it feel so right.

Please I wish to help in any way I can, I am by no means qualified to nor trained but I am educated only because of this life I have had. Cancer has been part of my world for so long that it has been excepted by me as a family member.

Please don't hold back, if you need some one to talk to I can listen and maybe help you through this. Remember the sky brightest after the darkest of storms, it is for these bright moments that we must live.

You are in my prayers, may God Bless You and Heal your spirit and body; May his Grace Rest upon you this day and may he bring you the peace you need for a good nights rest. Many nights I sat at the computer looking for answers, tonight is not an exception, but its different for I may be the one answering.


Goodmorning Rodney, and a sincere thank you for the interest you have shown in my case. Though I have friends surrounding me, this is all too much for them, and so I really don't have a place to vent. My parents just believe that with my mind and through prayer I can make this all away, and I am not even sure they support the therapies I am doing. I am often confused as to what it is I should do, and go back and forth with alternative therapies versus the chemo. I know I should just pick something and stick with it. My numbers are very confusing to me, though I know they are hight. The Bense protein the doctor showed me started at 16000 if that makes sense and after 4 treatments is just a little under 10000 and still a long way to go. My free kappy light chain is at 2745 and very high and the ratio with the lamba is124.64. Apparantly I still have a longgg way to go. I had really hoped I would be one of those people with fast response as I am a generally healthy person, but my MM seems to be taking its slow time, which is causing me a lot of anxiety. The doctor wants to take me in the hospital and give me high dose chemo, but so far I have said no, as I feel good and don't want to leave my 7 year old daughter and put the burden entirely on my husband (we have no family around here in TX), The first two cycles I was on was with Velcade, Revlimid and steroids. The Revlimid really did a number on me and I had daily fevers and lost a lot of weight. I was also so scared as I always thought chemo was something that could kill you rather than make you better. My responses were not so great so after the first two my doc replaced the Revlimid with cyclophosphomide which I reacted to a lot better and the numbers have come down just a little faster. It was supposed to be two weeks on one week off, but life gets in the way (both docs and ours) so with spring break, my husband leaving the country and my doctor, it usually comes out to two weeks on, two weeks off. This might be part of the reason I am going so slow, so I told the doctor I want to stay more on top of it. As it goes now I feel I must need many more cycles, and don't even know where they put the limit. HOw many cycles did you get, and why do you think you waited too long. How high were your numbers going in, and what were they when you came out of the stem cell. Did you get one or two. How sick did you get. Yes, I have so many questions to ask. My main worry is not being able to escape the misery because I am not a good sleeper and the nights get so lonely, scary and my mind goes to just wanting to give up. I wish they could just knock me out and get it done with LOL, but I guess that wont be an option :>) Well my new friend, I hope you can help me with some of these questions, i want to be a realist and at the same time wish so much for my mind to be put at ease. It is so wonderful to hear you talk about your grandchild and how you can sooth him with your song. Those are the things worth living for and I know I have many moments like that with my beautiful daughter. Please share with me your journey as well, I have the time and interest to maybe be off some help to you as well. Sending you Happy, Healing thoughts Cherie

You will be ok, I started treatment in June of 2011 with velcade by IV x2 weekly for 21 days then had a week off, also was taking dex. 40mg weekly. This went on until Jan 2012 when I started to have severe nuropathy in my legs and feet. Took a 2wk break and changed to sub q injection and things got better. I wanted to wait until 2013 to go for a stem-cell, I was never told that there was any maximum dosage and have never read any thing about it. In may they added Revlimid and my numbers continued to drop until in July they told me I was in chemical remission with a m protein at 1.7. Unfortunately around this time my long term friend and doctor quit the practice and there was about a 3 month transition where things got messed up and fell through the cracks. I had trouble getting the revlimid and it seemed and it seemed like there was some confusion. I did see the transplant doc in July at Hershey Med Center and he felt all was good to wait until January as long as I was watched very close. Things continued until Nov. at which time I scheduled the stem cell transplant. Once again unfortunately my number shot through the roof in December. They could only get enough stem cells for 1 transplant and it was only partially successful. I came out of it knowing that I had a .6 protein and aggressive myeloma. The normal maintenance therapy after a transplant is for 1 year of chemo and 2 years of zoemeta , I have 11 months of heavier than normal treatments at 2 times a wk with no breaks. Doctor Tolomoe at Hershey explained the IGG number very clearly as he was teaching a fellow doctor, this test represents a total number that everyone has, normal is in the 1000-1200 range, when I had the follow up with him my number was at 1685, the very highest end of normal, 485 represents the .600 protein. After 1 month of maintenance therapy my number is 1200 and the light chains are normal. Stick with it and trust your doctor, however watch him and try to stay alert and learn. I watched a doctor pray when they gave me the chemo, this all can be a very enlightening journey. A little about me, I weigh about 160 at 5'11" and look like I am 70, people called me sir at walmart today and were careful of me, I must look fragile.I just can't gain any weight. I work long hours as an engineer and have my own business as an mechanical service company. I had planned for 9 years of retiring at 55 and working on my own for the rest of my life, It was perfect, I got this in June2011 and turned down a job for up to 700 heat pumps in December 2011 , I cried it was so devastating as I turned 55 in January 2012. Why would I be led to do this and have been so blessed with it all and then not be able to complete the plan? While I looked at myself and felt so much pity at losing a life long dream I came to understand that maybe that was not my pathway at all, still not sure what it is but I know it will come to me. The one thing I have found is that no one can understand what is going on inside of you unless they have been there, I love my wife and family, we have very good friends, but none can really understand what this does to us. We must make some sense of it, When this all started I had a protein of 5.8 which I would assume is 5800, no tumors and no kidney damage, I did treatments for about 17 months, and have not really had any major issue's, least they don't look like they were major now, however at the time they were to me. The one thing with myeloma is that it is chronic, this could go on for years think it takes a great amount of courage to weather this storm, we also need great faith, I trust unconditionally in God and that this is all ok no matter what happens. I fall onto this and him at times when the weight is to heavy, while receiving the chemo for the stem cell malaphane I prayed , my God it was the kiss of death, there were several others doing the same thing, some were in panic attack and needed meds. After I prayed a peace fell onto me and I set about the task at hand, eat ice and survive. I am so lucky to have found my faith about 10 years ago, it has carried me thus far, The chemo did not make me real sick, your doc wants you to get a stem cell transplant. Its not a cure, but it is a way to get a long break and a reduction in side effects. I have always been in good shape and have taken good care of myself as you have, so if I can do this you can also. Once we realize that we are all terminal when born, it then becomes about what we do with the time given us. You and I have been placed on a higher ground than the ones who are healthy. We are capable of carrying a heavier load than others, I know this is a weird way of looking at this but we are in a position to be able to change the world for some one else. Great times of need produce great amounts of courage, I said some thing during the injection of stem cells that made the whole room stand still, and I didn't even think about it until after it came out, had I, I would never have been able to say it, BETTER ME THAN SOME ONE ELSE. I don't know where it came from, certainly not I.. Courage and faith are the result trials and challenges. Most great people throughout history did not have an easy life

Vent here, I will try not to ramble so. I am so sorry. It has been a rough weekend, little sleep, lots of bathroom trips and much fatige however- no sleeping pills and I did get some yard work done. Just wish I could go to church, week immune system so you must avoid crowds. They have come a long way with treating this, stay the course, you have a daughter who still needs her mom, do what you must to be there for her..

Your friend Rodney

Father please provide Cherie the rest she needs and clear her mind of doubts. Give her an envelope of your grace and surround her with your protection and love. show her that you are real and that you are with us. While doing this reinforce my faith as I need your help and must trust you more than ever.

Hi my dear friend Rodney, it has been a long time but I wanted to check in with you. I reread my story and your response and I am very grateful to have such a compassionate person such as you to have on my side and talk to. Well, a little about my journey since we last spoke. So in August 2013 I finally did my stemcell transplant after 9 chemo cycels. My bence was still at 5000 (where you started I guess) and I had 70 procent in my bone marrow (not so great) As slow as everything had been going I was cautiously optimistic. Like you said the transplant was not as gruesome as I had thought, though it was far from a picnic. I was so happy and optimistic because I had survived it and was back at work within a few weeks. Though I did end up in the ER a couple of times my recovery went really well. When the numbers came in they were at 450 for Bence and my bone marrow down to 30 procent. I knew this was not great and when I went back to my oncologist we both decided that my best course of action was a second transplant (my numbers already wanted to come up a bit after just a couple of months) I was extremely optimistic for full remission as I had dropped from 5000 to 450 and 70 to 30 procent. January 6 was my second transplant, this one was quite a bit tougher, with a lot of nausea, To this day there are few foods I can tolerate. The first numbers have come in and my Bence jones are now at 167 (I guess that would be 1.6 or .16 the way I saw you equating yours. My Igm is still 350, down from 4400 originally. To tell you the truth I do not want to know my bone marrow, as it might bum me out and I cannot have a third transplant anyways. As always I have recovered really fast and am allowed back at work. My weight is only 2 pounds away from my original weight and hair is the last thing that needs to come back. I will likely have to go on maintenance chemo in the next month, not really looking forward, but will do what it takes to be here for my daughter and family. I have decided I want to hold a fundraiser for MM, are you aware of any existing ones. There needs to be much awareness out there as early detection could have caused me so much less pain and trauma. There are ventricles missing on 4 spines and I guess my bones look like swiss cheese with osteopena. My pain has become very managable, I am now teaching gentle yoga, which helps with anxiety, stretching, strenghtening, meditation, positive though and stuff. At the healtfood store I am a huge celebraty for what I have gone through and how I have handled it . Once my first stemcell was done I became fearless and brave and feel like I can handle whatever comes my way. Like you said, we are strong enough to take this on or it would not have happened to us. I am planning to go to newspapers and radiostations, , tv stations, politicians and whoever I can get my hands on. I want to make the first week of November MM awareness week. Please give me any thoughts you may have on this and lets see if we can make it happen. My oncologist is at the forefront of research and I want to give the money to him. I have already discussed this with MDAnderson and they will help me do this legally right. If you want in on the deal or just give me ideas I would be so grateful. I still have a long way to go in my recovery and still want to raise this 8 year old little girl who needs her Mommy so much (no other family around) MM is painful and it deserves a cure, and I want to be able to help where ever I can. Love you my friend Cherie

Well Hello Cherie, I am so glad to hear from you, my what a wonderful story you have, I am honored to be included in your circle of friends. You have walked through the fire and have come out the other side refined as fine gold. Don't worry about the maintenance, most likely will be revlimid, velcade and dex, and of course zoemeta will be included. Dear compared to what you have already done these will be easy, I have been on them for a year now, and they just extended them for 6 more months, although they have reduced the levels of treatment. Several studies have shown that they are very effective and should be done after a transplant as they enhance the effect that the transplant has on our little buddy. HMM, swiss cheese for bones and a heart of gold, You want to help others, WOW. I think it is completely true, as we navigate the hardships of this life and our bodies get beat up our hearts become larger and softer. We become more aware of the needs of the many, some of us become so strong that we try to change the world and in doing so we make a difference. This is you; I would get great pleasure out of helping you in any way I can, you have a very honorable cause, and there is none more qualified than you to talk about the attributes of early detection. I am not aware of any MM fund raisers, but I do know some places that we may be able to get some help and advice, a good place to start may be right here with Scott and Ben also with the international multiple myeloma foundation. Another source of information may be Joni Aldrich, she is already doing some of what you spoke of. I think I would start with all of them but most certainly Joni. If we all were to combine our resources,,, just maybe we could win the war, what a wonderful thought. If it is ok with you I will check with the company I work for, they are always looking for things of this type. Don't misunderstand me I do not think they would provide any funding, but if I could just get their logistical support it would be great. I think they have offices in all 50 states and 56 other countries including Dallas. Ps I have had 2 transfusions and had some side effects of the revlimid kick in, my stem cell doc thinks he may have pinpointed the problem. They had taken me off the dexamethasone and he felt because it was a steroid it may have been keeping the side effects under control, so back on the dex I go, time will tell.

Now you wonderful lady, I do not think I have ever been complimented in a way that effected me as much as yours. I am the one who feels honored to be your friend, you are the person who will show the world what a difference one person can make. I saw a story on the news about 2- 6 year old boys(friends), one ill with an incurable disease .The researchers felt they were close to a cure but funding had been cut, no money-no cure. The healthy boy wrote a book about his friend and how they needed help, it was published and sold on 3 continents. He raised 500k and donated it all to the researchers, they felt it was enough to get to the cure!

The power of Love shown by just 1 child, what a difference he has made. Just don't over do it, make sure to get your rest.

Father, please keep and hold Cherie, keep her in the bubble of your love and kindness, heal her body so that she can change the world. Lord you know the power of one, you know the difference that one can make, please help her, she has the conviction to be able to do this. Faith the size of a mustard seed can move a mountain, please give her this faith so that she can move mountains. Wisdom is the foundation of all knowledge , please give her the wisdom to know how to proceed and the courage to do so. Give her the strength of character she will need throughout this whole process.

In Jesus name amen

Keep me informed and let me know what you would like me to do, maybe the television show that Ben posted on here could help, check the discussions.

Your Friend in admiration and love


I took the liberty of emailing Joni

Hi Rodney, I was so excited to hear from you this morning, and yes, I would love all the help you can give me in this !!!! You know, I had been anemic (borderline) for years, and I am thinking how with the one simple blood test they would have found my then smoldering Myeloma and what suffering and money it would have saved me and the insurance company. I am pretty sure they would prefer to offer the simple blood test rather than the million plus dollars they have spend on me so far. So I am planning on contacting them as well. I hope to bring the same awareness to Myeloma as Katie Couric did with her husbands colon cancer diagnoses. Because ours is so rare, None of the many doctors I went through (and chiropractors) ever stopped to think it might be MM, because they did not have the awareness. When I think about the many adjustments I got for the pain in my spine with three tumors sitting on them, How easily one adjustment could have broken my spine of paralised me, I cringe at the thought, so the awareness has to extend to chiropractors as well !!! Well, I don't know how you are on available time. I have three part time jobs that I love to go back to and an 8 year old to raise, but since this is all my passion, it will be easy to fit this in as well. I have a dear friend at MD Anderson who will participate in any way he can. He has money too and will help there too (don't expect that from you my friend, but my friend Marc insisted). We can make it the three of us to take this on if you like, I would love to include you :>) It will mostly be about contacting people we know and have them contact people they know etc, etc. I have quite a following on FB with my journey, maybe you do too and can reach people that way. I will certainly contact my church etc, but the biggies I hope to be things like the Today show, the View, dr Oz, hey, why not think this big right :>) What I will first do is draw up a letter about my idea and personal story and with that have a letter or flyer explaining what MM is. Any ideas you have my friend would be greatly appreciated, I can run it by you and you can add, or suggest me to leave stuff out. I do tend to go on and on and don't want to bore anyone with my lengthy letters LOL. Anyways, that is it for now. If you have FB, try to friend me at Cherie Rineker and my phone number is 979-248-7306, best to text me if you can and then make a phone date :>) Lets make November 1st thru 7th Multiple Myeloma awareness week, and make the whole country aware of this nasty Cancer and find the CURE. Together we can ( And I am sure we have all Mighty God on our side :>) Thank you for the prayer my dear friend, they always help, and I am happy to hear you too are doing so well.

Your friend Cherie

PS, feel free to pass my FB info and phone number out to people that are interested to join and are serious about it

Here is a you tube I put together this morning my friend. Let me know what you think. I have reached out to alot of tv show, and now I will wait :>)

Watching it now, its great, tender, compassionate and informative. as soon as I can get some time to figure out face book I will get my contact stuff to you