Category: Myeloma Stories

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Myeloma Stories

Nikki – Houston, TX

My Husband was diagnosed in August 2012 with stage 3b Multiple Myeloma. Earlier that year, my husband had been starting to feel really crummy, extremely tired and his body hurt all the time, especially his feet. (He compared it to feeling like having the flu constantly)He’s a pretty big guy and used to work out religiously until he started not feeling like himself.

From January to Mid July, my husband’s health deteriorated drastically. He went from working 12 hour days and then hitting the gym to barely being able to stay awake for more than an hour and lifting maybe 10 pounds.

We didn’t have insurance at the time but I kept hounding him to go get checked. He finally went to a small clinic by our house and they said they weren’t going to diagnose anything but his numbers were very out of sync and he really needed to go to a specialist.

It finally got to the point that the only way we knew what was going on was the fact that he had passed out as he was getting out of our truck to head into work. (He wasn’t able to really drive himself anymore) I rushed him to the hospital on a Tuesday morning and they took him over a gun shot victim (if this gives you any idea on how incoherent and bad he truly was).

That Friday, once we got the diagnosis, his oncologist told us that if he wouldn’t have come in when he did he wouldn’t have made it more than another 2 or 3 days.

It is so important to listen to your body and to find out what’s going on. Please do not hesitate to find out what’s wrong even if your doctor has said it isn’t major; it very well could be!!! Thank God my husband is still here with me today and we are about to celebrate his one year birthday (bone marrow transplant) in April!!

— Nikki

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Myeloma Stories

Amy K. – Abilene, TX

Last year we watched as my mom complained about her hips being sore for several months. She went to her regular doctor who X rayed her hip, saw nothing but recommended she see an orthopedic doctor. The pain in her hips got better but then her shoulder began to hurt. At 61 years old it was easy for Mom to dismiss it as arthritis.

In July (after a couple of months of pain) she fell while putting her swim suit on. My dad and I finally convinced her to see a doctor. Her shoulder was broken from the fall. A dear friend got her in to see a bone doctor at a very short notice.

My mom and sister went in to get her MRI results. We thought the worst case scenario would be surgery for a bad rotator cuff. My dad didn’t even go because we never dreamed it was anything beyond a bad rotator cuff. Needless to say, we were beyond devastated at the diagnosis.

But now, 8 months later, Mom is on the healing end. She’s recovering from a stem cell transplant and is getting stronger everyday.

One thing that has been very frustrating during this time is the lack of awareness in our community. We have found one survivor which has been an answered prayer for all of us, but I do wish there was more awareness and resources available in our hometown.

If there’s anything I can do to spread awareness for others diagnosed I would be more than willing to do it.

My word of advice – never dismiss something as arthritis or other things without getting confirmation from your doctor. Myeloma has a time limit and you need to get to started with treatment as soon as possible! Be aware and be proactive about your health! Blessings.

— Amy K.

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Myeloma Stories

Daniel L. – The Villages, FL

I live in The Villages,Fl and was diagnosed on December 5,2005.

Treatment:
VAD
Transplant 2006
Velcade 2010
Velcade sub que in July of 2012
Revlimid – in March of 2014

They say a positive attitude is helpful in fighting cancer. I believe it is a must in life!

I was a sales manager for Little Debbie Snack Cakes. I traveled day and night to make sure the cakes were selling. They’re a wonderful company, family-held and just about as sweet as the product. They even created a job for me that allowed me to build my retirement house in The Villages, in Florida, and go on working for them.

I was 59. The kids were grown. I was getting back in the game . . .

Then I went in for a routine physical with my PCP, or so I thought. He told me my protein was running high and that there was a very serious cancer called Multiple Myeloma and I should see a Hematologist.

I can still remember the window in that doctor’s office, the one I was staring out he told me I had cancer—and not just any cancer, but one that only gave me only 2-to-5 years to live. I hadn’t even retired yet!

“You gotta be kidding me!” I said, “this can’t be happening to me, I feel fine”

But it was. I had multiple myeloma. And not much hope at the time. That was a pretty good wallop to my mental health, I can tell you!

But I’m a very positive person. I decided to face whatever came my way, head on. And to keep up with my treatment.

That was in 2005. So at first, I went on the older treatments. They made me very sick. I had infections. Was in and out of hospitals. Then I went for an autologous stem cell transplant in the spring of 2006 And boy, that knocked the stuffing out of me as well. All I can say is, “Thank God for Ruby, my wife!”

When I came out of remission, they put me on Velcade in 2010.

And then I really got back in the game.

You see, what a lot of people don’t know about The Villages is that it’s a mecca for softball. We have 3,000 softball players and about 250 teams. We have five levels of divisions! Some Major league-rs retire there just so they can play competitively again. We have many Senior Softball Hall of Famers. And many of our players meet up again for the with guys they’d played competitively against for many years! It’s our own field of dreams.

Before I got cancer, I was a Division 1 player. I was batting .600 and could hit the ball 300 feet. But after the transplant, I couldn’t walk to 1st base, let alone play it. I used to go out to the softball diamond, alone, at night, when no one could see me. I’d stand at the foul line and try to throw a ball to the dugout fence (about 15’). At first, I couldn’t even do that. But I came back, night after night. And once I hit the dugout, I backed up. And kept throwing.

I knew I had made it back was when I won the Division batting title in the summer of 2007, exactly one year after transplant with a 630 average.

And in 2012, I’m happy to say, I was player of the year! And batting .588. By that time, I’d moved onto Velcade subcutaneous. That’s even better! It’s just a little shot. Once a week! It hardly interferes with my schedule, which is good because today, I’m on three teams! I play for Softballs-R-Game, the Ripkens and I’m manager of the Marlins. We just finished our regular season and finished 2nd. By the way, we’re constantly scouting new talent. We have a draft three times a year and I can get you in the next draft. So if any of you play ball or golf and are thinking of moving to The Villages, come find me after the presentation.)

There’s no question in my mind, Velcade has helped me get back to softball. And I’m back to my golf game as well. After transplant, I couldn’t play more than a couple of holes before tiring. I remember sulking in the golf cart one day, when Ruby announced she wasn’t going to play with me any more.

“Why?” I asked, surprised.

“Do you realize where you’ve come from?” she said, “You almost died! And you’re worried about a little game?”

I’d been a pretty good golfer with a five handicap. But she was right. How I golfed didn’t matter. It was being able to play at all. Now we play a couple of times a week. I’m doing things I never would have dreamed to be possible after my first treatments. And perhaps even more miraculous: I don’t get mad on the golf course any more! Well, just maybe a little aggravated!

Another big part of how I live my life is the IMF. We have a new group that’s just gotten started at The Villages. We’re only three months old and already up to 15 people!

But it was when I first walked into an IMF support group meeting, years ago, that I had real hope for the first time. You see, I learned that myeloma is such an individual disease. Everyone’s on a different regimen. There are so many options.

So many new treatments have come out since I was diagnosed in 2005. And these days, they’re so good, you sometimes can’t tell the patients from the caregivers! It gives you hope that even if we can’t cure myeloma, maybe we’ll be able to treat it like a chronic disease, like diabetes. So you’re always looking ahead to see what might be next. On-line there’s a lot of information, but so much of it’s crazy. The IMF helps you sort out the good from the bad, and it tells you about the clinical trials that are going on, so you can stay ahead of the game. It’s a trusted source.

It also teaches you that you’ve got to be involved in your own treatment. The doctor is the leader. He’s the one who went to school. But you’ve got to come in ready to make decisions. Your Doctor is your partner. The IMF keeps you informed on what’s out there, so you can take an active role in your treatment decisions.

Last month, Ruby and I celebrated our 34th wedding anniversary. But today’s another important anniversary. It’s been 8 years and two days since I got my diagnosis. And just yesterday my team played in the second round of the playoffs. While I was driving up I was with my team in spirit! Although I’m a competitive guy, I’m here to say it doesn’t really matter who won; its playing in the spirit of the game that counts. And just like with myeloma, you’ve got to keep on swinging.

— Daniel L.

Categories
Myeloma Stories

James B. – Panama City, FL

We know Multiple Myeloma cancer presently can not be cured, will take hold and get worse in time. I have Multiple Myeloma, Light Chain and Amyloidasis, stage three,had some symptoms 2009.

February 2010 during surgery, Catheter Arrhythmia Ablation the nurse informed me that I had fluid build-up in my legs that I should report to my health provider. On a return trip driving from Toledo, Ohio, over 1,000 miles, May or June 2010, I had to stop every 200 miles and rest, normally could make the whole trip with no more than one stop with a short rest. Knowing something was wrong I contacted my health provider, she found a Thyroid problem, started Synthroid and Lasix, lost twenty pounds of fluid.

October, the fluid build ­up started once again. More tests, determined a kidney problem, my provider scheduled an appointment with a Nephrology doctor October 27, 2010, she thought it may be Kidney cancer. More tests, indicated Chronic Kidney Biopsy Stage 3, Proteinuria, Hypertension. Dec 21, 2010 scheduled to see a Hematology Oncology doctor.

12/29/10 after more tests, Light Chain, Multiple Myeloma and Amyloidosis, stage 3, started Revlimid and Dexamrnthasone. Completed Bone Marrow Biopsy and whole skeletal survey. Affected areas, Kidney, Hi Calcium and Blood. While bone marrow is the area of cancer, the first report indicates I still have strong bones. Research indicates survival rate was about three years at this time, Expected cancer started early 2009.

My Oncology doctor scheduled me for a Life Port and changed the treatment to Chemo infusion. Later the treatment was changed to Revlimid, May 2011, which came with major side effects, Revlimid was stopped November 2011, my Oncology Doctor scheduled me for a complete blood transfusion the last week 2011, which did not agree with me.

Returned home, went in to a coma the next day and ended back in the hospital. After three days in the hospital, the doctors gave me no chance and gave up on me, Barbara my wife was called to the hospital, when she arrived, there was a number of doctors and nurses in my room, she spoke to me and for unknown reason, I came out of the coma. Had no body functions, could not get out of bed, bath, walk, nothing except move my hands and talk a little, was on a breathing machine, found out later my lungs were damaged during the blood transfusion or the coma. Two weeks in the hospital, was moved to HealthSouth for three weeks, started walking a little using a walker, returned home under the care of home nurse for another four weeks.

When I got stronger, my Oncology doctor started another treatment, May 2012, Velcade injections weekly. Still had side effects, minor compared to when I was on Revlimid. October 2013 my Oncology Doctor was thinking of taking me off Velcade, he reported I have been stable for the past six months.

I am the best I have been for three years, still have side effects, breathing problems, very weak, tired all the time, can sleep for nine hours and feel like going back to bed.

Get by walking using a cane due to weak legs and balance. My normal blood pressure is low, good when 110, can be problems when it goes below the mid 90’s, has noted to drop to 83. When it drops my pulse increases from a normal 55 ppm to 115 ppm. While this may not be high for others, I am use to 55 ppm. When I was on Revlimid, my pulse would increase when ever I laid down or got up from bed, low BP and high pulse would last 10 minutes. Note I would be dizzy at this time. I also fell five times..

My blood pressure would drop and pulse would increase after getting up and last much longer, I would have to change my plans and stay around home. November I left home, feeling so bad I returned home. Nov 5, 2013 I went to pick up a pair of glasses. My pulse was 95 when we left. After I purchased the glasses, got up from a low chair and passed out, lucky I fell back on the chair, or some one caught me and guided me to fall in the chair. Had to rest for 15 minutes and use a store basket to walk, use a cane and always use a basket when in a store. This is the second time this happened in November. Note when I fell five times in 2010 or ­2011, two or three times I was dizzy, or was looking up and passed out a couple of the times. During all the times during the falls, dizzy or a drop in blood pressure and was taking Lasix. I normally take two lasix before bed, if I am increasing fluid build up I take three lasix.

During November I took 3 lasix three different times, including the two days noted, I now three lasix in the night two lasix two hours before bed, take another Lazix before going to bed, results are good, no problems and have a better control on the fluid build up. Lasix works better at night and I have no problem going back to sleep.

January 2014, my oncology doctor suggested to think about getting off Velcade now that I have been stable for approximate nine months. Being in the U.S. Air Force for over 24 years, I knew I had to check everything before volunteering. This was the time information was release, injections and infusions were in the Medicare cuts under the ObamaCare rules. Our local newspaper ran an article on possible Medicare cuts which included infusions and injection. I followed with my own article to the paper, Congress and the President.

I have also been blessed with an Oncology Nurse, who should receive the credit for me being a normal person again. I am the best I have been in many years. Sarah knows her patients needs, how to comfort them, trusted by all her patients. All her patients seem to have a positive effort in dealing with cancer, a medical professional who reaches out to the caregiver, stands out for her caring compassion, outstanding knowledge, medical skill and a friend who cares about her work.

I discussed with Sarah on being removed from Velcade, Sarah reminded me I had over 3 1/2 real bad years before starting Velcade, now I am once again a normal person, I might want to delay in stopping the treatment. She also said once removed I should know there is no guarantee Velcade would work as good as it has for me after being stopped, If you volunteer to be removed, this may work against me if Velcade was to be limited by the Government. She told me to make sure I talked it over with my Doctor.

I thought any cuts to Medicare would be after the this years election, I decided to stay with Velcade. A good decision as my doctor advised me November 2013, Medicare was cutting from four Velcade injections per cycle to three Velcade injections per cycle. As of March 2014 I am a 79 year old male holding my own, still stable, and still receiving Velcade injections by my nurse, Sarah.

In Panama City received another blessing, Sarah a MM patient and Sheila a MM caregiver started an International Myeloma Foundation Support group with monthly meetings the first Saturday at a local Hospital. We now have over fifteen members. Our priority to reach out and contact as many Multiple Myeloma Patients, caregivers, friends and family members as possible. My Nurse Sarah attends every meeting and contacts speakers. Our plans include a radio interview plus a local TV story with my oncology doctor explaining Multiple Myeloma, Sarah and Sheila will explain the support group, my job is to contact the local NBC TV station where I worked for 24 years.

I also wish to include my wife, Barbara, who has stuck with me the total time, visited every day in the Hospital and my time in HealthSouth. Completely in her care for 2 years, during the time I was recovering from the coma. She is always with me, during all doctor’s visits, where ever I go, still protecting me in case my legs were to give out. I now have special diets. I believe the cancer can be worse for the Caregiver than it is for the patient in many different ways, and remember she may not show it outside, but is always with her on the inside.

This is my story, over five years Multiple Myeloma, Light Chain and Amyloidosis. My nurse, Sarah has also been nominated for CURE’s 2014 Extraordinary Healer. Hope my story may help new cancer patients and caregivers in understanding what can be a positive side even for Multiple Myeloma cancer.

— James B.

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Myeloma Stories

Sarah D. – Panama City, FL

My name is Sarah Christina Davis and my husband Mike and I are leaders of the Northwest Florida MM support group in Panama City, FL.

I’m so grateful to God for everything and I’m very blessed to be here sharing my story with you.

We were living in Charlotte NC when around Nov 20th 2009 I started to have pain in my left shoulder and gradually it moved to the other side of my body. I thought I just had sore muscles since I was helping my husband do some work around our house few weeks earlier. But the pain did not go away and it got worse. I couldn’t move my upper body and my primary care doctor thought I might have acid reflux.

I went to see a Gastroenterologist and had an endoscopy that showed no sign of acid reflux. He also ordered a bone density, bone scan, MRI and CT scan. Those tests showed that I might have Multiple Myeloma. I asked him “what is that?” He told us it was cancer. We did not even know what MM was until the first time I saw the Oncologist referred by my medical insurance on February 10, 2010. By then, I had so much bone pain all over my body that I couldn’t even get out of bed alone and could hardly walk.

Finally on February 23rd the Oncologist confirmed that I had MM stage 3 after a skeletal survey and bone biopsy. The Skeletal Survey X-rays showed that my bones had a lot of lesions and looked like a road map. That explains why I was experiencing so much pain and fatigue over the last two months. Immediately he sent me have two pints of blood transfused into my body because I had very low red blood account. He explained to us that Chemo treatments would last about 6 months. We both cried all the way home and couldn’t believe the news that I had Multiple Myeloma cancer.

I thought to myself “my life is over and this is how I am going to die at age 55”. I felt a fear of the unknown sweep over me. Because of this strange cancer called Multiple Myeloma, I wondered how much suffering I would have to endure before I died? It was overwhelming not knowing what to expect and I prayed that somehow I would make it through this without losing my mind. No one in my family ever had cancer and I was the healthiest one, although I was anemic most of my life.

Finally on March 1st 2010 I started Chemo with Velcade, Revlimid and Dex twice a week and Zometa once every three weeks. It was not as bad as I thought it would be. I thought they were going to hook me up to a big machine and do a lot of radiation on my body. I was surprised that it was not painful when the triage nurse gave me Chemo intravenously in my arm. But after about 6 weeks of chemo the doctor had to put a port in my upper chest because both my arms were black, purple and blue from the Chemo IV needles. My husband was working full time so I was home alone during the day. It gave me a lot of time to think about my misery and I cried a lot and felt sorry for myself. I did not know how long I was going to have to suffer like this. I was afraid that this was going to be an even longer road if I didn’t snap out of the self pity and crying. The last thing I needed was depression.

So I had long talk with myself and God and I decided to accept the situation and be grateful for it. I was born very premature and almost died at birth but God gave me 55 years so I should thank him for everything and be positive and grateful instead of getting depressed and upset. So what if I’m dying. No one lives forever on this earth. From that day on I kept thanking God for the cancer and praying that my suffering would not be in vain. Somehow this will be a good lesson for me. I told God that His will be done and whatever he decides is Ok with me. I ate a healthy diet of a lot of vegetables, started gentle exercises and planted flowers when I was not in pain. I ended up in the ER three times within six months during the Chemo treatments because of so much bone pain. But I kept a positive and grateful attitude for the whole time.

Thankfully after two weeks of chemo my protein level went down to 136 from 750. So the chemo was working well although Chemo treatment made me feel very tired, dizzy, nauseated, constipated and suffered from insomnia and painful neuropathy in my legs, feet and hands. I had to constantly rub them. It felt like a thousand needles of fire were shooting into my nervous system giving me constant cramps and pain. It was unbearable but I had to go through it until the chemo is done. Chemo was killing the Multiple Myeloma cancer cells but it would not leave me without a fight because it got into my sternum so strongly that even the slightest movement gave me extreme pain. So I had to move very slowly and carefully. One day I ended up in the ER and they gave me Morphine for the pain. The pain pill did not work most of time and just made me very dizzy and I felt weird. I had to sleep sitting up until the pain in my sternum gradually decreased which took about six weeks. I did not sleep well at all during that time.

After the the cancer went into my rib cage it gave me shooting pains so badly that all I could was cry. We called my doctor (it was a Saturday evening) and thankfully the standby doctor called in a prescription for stronger pain medicine that saved me from going to the ER. That medicine made me very dizzy and I felt weird as always but it helped me to sleep.

After six months of chemo (1st of March thru the end of August 2010) at the end of November 2010 my doctor told me the Good news that I was in remission. I did not have a stem cell transplant although the doctor suggested it in the beginning, but I choose not to have it. Now I’m doing well on a maintenance regimen of 2.5mg Revlimid. It has been four years since I was diagnosed with MM and I’m still in remission and doing good so far.

Every day I give thanks to God, My savior Christ Jesus and the Holy Spirit. He heard my prayers and gave me strength and wisdom when I needed it and led me to where I am by providing me with good doctors, nurses and medicines and everyone who prayed for me. God bless them all.

Lastly, I thank God for my wonderful husband who was there for me. We sold the house in Charlotte NC when we moved to Panama City, FL in 2012.

We are now leaders of a MM support group in Panama City, FL that we started in 2013 with help of IMF, especially their regional representative Anne Pacowta in Jacksonville, FL. When we started the group we had three members. Since then we’ve grown to 14 at our last meeting. We’re getting the word out about our group through local newspaper ads and we were recently interviewed for a radio spot with four local stations. They will start airing on March 16th and will continue as they are able to give us the air time. We’re also planning to get our message on local TV stations too. Let’s keep working together to beat this disease for good. We’re here to help each other. We appreciate you very much. God bless you all.

— Sarah D.

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Myeloma Stories

Kristen R. – Rancho Cucamonga, CA

At the age of 35 I was denied life insurance and told to contact my primary care provider. My family doctor of 15 years at the time told me not to worry, life insurance companies run so many tests, oftentimes patients don’t pass all of them. Besides, I was the picture of perfect health. He ran the tests that the life insurance company showed that my numbers reflected as “abnormal” and told me that he would call me within a week.

Two days later while I was at work he called and said I needed to get to the lab that day and have some more blood work done. I explained I couldn’t, I was on the way to court with a foster child. He was adamant, as was I – I was a Child Protective Services Social Worker at the time and I loved my job. It was a Friday and there was no way this child – or the courts could wait until Monday, he told me the same thing. We compromised on Saturday for the lab work, I still was not concerned as I felt fine.

The following Wednesday I went in for the results and was told that I may have something known as MGUS, but he wanted to refer me to a specialist – I still was not worried. I week later the referral card came in the mail with my appointment for the Oncology Department – I had no idea what Oncology even was and wasn’t concerned.

Ever the optimist, I walked into my appointment knowing that everything was going to be fine – how couldn’t it be? I had a husband, 2 children in school and a wonderful job. Besides, I felt great! I met with the Oncologist who did a bone marrow biopsy and told me to return a few days later for the results.

We returned, my husband the pessimist and me reading a book without a care in the world – sure it was negative – when the doctor walked it. He looked at me and said, “Well, you’ve got Multiple Myeloma.” My eyes welled up with tears and his next sentence was, “Why are you crying?” That was my last time seeing that doctor.

What I have learned over the years is that I am in charge of the decisions regarding my health – and many times I have to fight for what I want. I sometimes make decisions that go against the norm, but here I am – 8.5 years later and I am my doctors longest living Multiple Myeloma patient.

I decided which treatments I wanted to follow and 8 months ago I called up my doctor and told him I had decided to quit taking my maintenance chemotherapy. I struggle daily, it’s not from the Myeloma – it’s from the side effects of the treatments, medications that I have chosen to take to fight this cancer. I do not regret those choices because they have kept me here to see my children grow up.

I tell people the best thing they can do is follow their gut and do what feels right for them – individually. Do your research, but don’t let Multiple Myeloma run your life.

In the beginning, I was consumed by my diagnosis. Now, I don’t worry about it. Yes, I have choices to make occasionally but the truth is that I don’t have any control over this intruder in my body. I am not going to let it intrude on my mind and my spirit as well.

— Kristen R. 

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Myeloma Stories

John B. – The Villages, FL

I was diagnosed in March of 2013. However, I believe that it had been coming on for for several vears.  before I was diagnosed. I was having balance and walking problems. I just did not feel right and knew that something was wrong. Then in November of 2012, I had severe back pain. Found out from My Family Doctor that I had a Fractured vertebrae (3 of them). All repaired by invasive procedure.  I thought that once the vertebrae fractures were repaired that I would be free of pain. Not so. I continually have what is called bone pain.and it also is worse in cold weather. I have to be careful with putting pressure on my ribs, because they fracture very  easily. I am presently on revlimid (10mg) one daily and dexamethasone (on Monday) and I get an IV of Zometa (bone hardener every 28 days). MM is treatable, but not curable. Overall, I am thankful because I know that there other patients at The Florida Cancer Center that are lots worse off than I am. We pray every day and thank the lord for what I have and thank him for being so kind and loving and caring.We know that he is there.

— John B.

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Myeloma Stories

Barbara K. – The Villages, FL

I fractured my back in 2005.  After waiting 3 months wearing a brace it was no better.  The doctors decided to do surgery.  After doing my pre-op blood work it came back showing I was 1/2 empty of blood.  I didn’t knows it but my kidneys had shut down too.  After a couple blood transfusions my kidneys started working again, I was lucky!   The doctors did a biopsy and found Multiple Myeloma.  I started chemo and after 7 months I was ready for my stem cell transplant.  It was successful and I was clean for 6 1/4 years.  It became active again and now I’m on maintenance Revlimid.  Doing well on for almost 2 years now.  Stay positive!  It’s half the battle!

— Barbara K. 

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Myeloma Stories

Tom W. – Westlake, CA

Many folks enjoy this story, either because they’re glad it didn’t happen to them or that they know someone has gone through it and survived.

My story begins with a classic mis-diagnosis and continues with a focus more on the damage caused by Multiple Myeloma (MM), than the disease itself. (Most other patients will say “wow! you’ve had it worse than I”!)

It was early in the year 2011, when the first diagnosis on a nagging band of pain running from the mid-chest, around under my left arm, was “you need more exercise”. After many days of increasing pain and sampling many varieties of pain meds, waiting for the mysterious problem to disappear, it was the numbing in the feet and finally, loss of control of my legs, that brought more intense focus on my complaint. In the interim, a chiropractor assigned me to a massage therapist that pounded me pretty well which, as it turned out, could have done serious damage.

A sharp orthopaedic surgeon quickly found the cause – a compressed spinal cord, caused by a cluster of tumors that had dissolved bone at T7 and T8. And on May 6th, I was rushed into surgery for an attempt to restore function to the cord before permanent atrophy set in.

The concerns for the outcome were (1) would I survive the procedure? (2) Would I gain full mental acuity afterward? (3) Would the spinal cord be saved? (4) Would the fusion allow full mobility to return? (5) Would the MM continue to cause havoc?

After 12 hours in the OR over two days, the procedure was wildly successful (my surgeon still beams when he views my x-rays.) The tumors, which looked like a cluster of Concord grapes, were removed and the spine was repaired by inserting a spacer in a gap and fusing the area with a 2″ by 10″ strip of titanium, secured by eight titanium screws, neatly spaced as if a machine had done it.

However, I didn’t just walk out of the hospital with a smile, it was just the opposite – I was at the lowest point of my life, with nowhere to go but up. The compression had caused the brain to lose all contact with the network of nerves and muscles, from my chest to the tip of my toes. I was a paraplegic, albeit a temporary one – very weak, hallucinating from the anesthesia and unable to even sit up in bed, because I had no sense of balance. Many blood transfusions were needed over the coming months to cope with raging anemia. When I regained my mind, I was determined to “get my legs back” and, oh yes, my digestive system.

My burden felt even heavier after I learned the cost of Revlimid, which can cause one to consider the value of their life, in currency.

What followed was weeks and months of dealing with frightening, fatiguing and painful physical therapy and the other inconveniences associated with hospital life.

This was not a restful time. I had to fight for myself. It was hard work to keep myself in a condition where I could withstand therapy. Therapists would try to work me out when I was already exhausted. Others would waste my energy with unnecessary therapies – speech, cognitive, etc. It was a job coordinating my bathroom needs – plastic bottles, bedpans and staying relatively sanitary. I had to monitor the medications served up – the nurses didn’t always get them right.

The first exhilarating achievement was when I was transferred to a wheelchair and could leave the room and navigate around the hospital on my own.

In late August I was released, much improved, but still bound to the wheelchair, with yet a long way to go. At home, doing a variety of exercises on my own, I graduated to a walker, then to a cane and finally to venturing out with no physical support whatsoever.

Today, any lingering mobility problems are very minor – I can get around nearly as well as ever. I can now amuse myself just by watching me move around. And my enjoyment of resuming my normal life knows no bounds.

The Myeloma? Oh yes, I almost forgot! It has cowered in the background – subdued, like a scolded dog. My regimen of Revlimid and Medrol has kept it in check, while Zometa, Prolia and mineral supplements forestall further damage. Then there’s yogurt for the quirky digestive system, is much improved also, but still a challenge at times.

The cost of Revlimid? CelGene generously supplied it gratis till 2012, then introduced me to the Chronic Disease Fund and the Leukemia and Lymphoma Society, which have absorbed the co-pay expense to date.

How did I get through it all? World-class support from family and friends and the hundreds of medical professionals working on my behalf. My daughter Tracy served as my forward reconnaissance and trouble-shooter and wife Jo has been my Red Cross. Then there’s the Westlake Village, California, MM support group to lean on. They’re always ready with a hug and to lend an ear.

How about me personally? Many years ago, I had prepared for aging by coming to a comfortable understanding of the mysteries of life and death, and dealing with adversity. So from the get-go I was fairly certain how to act. There were only two short periods of despair, that I can recall. But many spells of wonder and curiosity.

My future plan is to carry on with all means of therapy, hoping to sooner or later advance to that sublime state known as remission. My numbers are harvested and analyzed by my oncologist, Dr. Michael Masterson of Thousand Oaks, CA, and occasionally, by consultant Dr. James Berenson of Los Angeles.

Yes, the odds are that my future with MM may not be as smooth as after the “grapes” were removed. But am certain I’ll deal with it well enough – somehow.

— Tom W.

Categories
Myeloma Stories

Carolyn C. – The Villages, FL

I was very fortunate to be diagnosed fairly early before having any bone fractures because of a Dr. Oz show I had seen.  Dr. Oz mentioned if your urine is very foamy, it could be a sign of a serious condition.  I had bubbles for about a year.  After seeing the show, I brought it up to my primary physician who ordered a urinalysis that showed the protein levels that led to my diagnosis.

— Carolyn C.