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Barbara Jewell

 

Vancouver, WA; Uppityx9@cs.com

1947 / Class of 2001 / Type: Kappa LC / Updated: 8/04

I was diagnosed with Kappa Light Chain Myeloma in Oct 2001. While watching my 6 year old at a skating lesson, I experienced a heart flutter. Normally, I wouldn't go to the doctor for something so "trivial", but something made me go that day. Labs were drawn during my visit, which showed me to be in renal failure with a creatinine of 3.3 and suffering anemia with an HCT of 9.5. A referral was made to the kidney specialist. At that visit they began to discuss transplant as though I knew what renal failure meant. They also ordered more blood work.

Just as I was reading everything in sight about renal failure, I received a call from the Nephrologist. "You have an M protein spike and we need to refer you to the oncologist". I had never heard of a monoclonal protein and quickly went to the internet. Multiple Myeloma was a distinct possibility.

When I went to the oncology appointment she said "I'm pretty sure you have Multiple Myeloma and we are doing a bone marrow to confirm". I began to cry. No one there seemed to care.

I went home and did my homework starting at www.multiplemyeloma.org. The people there put me in touch with several front-line researchers. I was amazed at how available these hardworking doctors were. They explained that current research is focused on a biologic "attack" of Myeloma cells as opposed to conventional chemo. If you make the "Myeloma neighborhood" an unfriendly place, the Myeloma cells cannot survive. I was encouraged by the quality of research was being done to combat Multiple Myeloma.

After the diagnosis was confirmed, I asked the doctor to begin a Thal/Dex regime. No, she said VAD is the only way to go. I tried to explain to her and gave her a file filled with journal articles. She refused to consider these "unproven treatments". I explained that I had just been diagnosed with an illness that when treated conventionally is almost always (if not always) fatal. I said I was willing to take the risk as the reading I had done and the information from researchers was quite encouraging. "No" she said, we won't be going in that direction. So, exhausted and frightened I gave in, got a central line, and began VAD. With this therapy, I lost my hair, was nauseated and tired, and ended up in the hospital with "chemo induced pneumonia". But...I responded and achieved a "complete response".

I began to look for other doctors who would be willing to learn about and try newer therapies. After 2 false starts and refusal of prednisone maintenance, I finally found a doc who had done part of her residency at the Dana Farber Institute. I asked her to call them for suggestions on maintenance. She did, and I started Aredia infusions once a month plus 50mg of Thalidomide daily.

I am still in complete response and learning all I can about PS-341, Revamid, Genesense and other promising meds in clinical trial for when I relapse. I am hoping that I can avoid transplant by entering a good trial.

I've learned that most docs don't understand Multiple Myeloma. I've learned that a person has to educate themselves and advocate for themselves or risk being caught on the short end of the 3 year median survival. I've learned that most of the docs where I was being treated (Kaiser) have a very matter of fact way of telling you you have an aggressive cancer and have no skills in dealing with your reaction. I've learned that attitude and nutrition are important variables in treatment. I've learned that life is fragile and we better make the most out of every single day we have.

June 2002: Yesterday I was feeling really happy because all my labs were normal (for the first time since diagnosis) with the exception of my creatinine which was 1.8 (that is good for me). The best news was that after being on Thalidomide, my beta 2 microglobulin had dropped significantly. As the b2m is being considered for a staging criteria and is used prognostically... that was great news.

Today, however, the world isn't quite so rosy. I called for the results of my urine electrophoresis and the dreaded M protein is baaaaaaaaaaaaaaaaaaack, albeit at a low level, but back nonetheless. It is interesting to note that w/light chain disease you can have perfectly normal serum levels, but still have M protein detected in your urine. Lots of docs don't know this, mine didn't because she had told me we didn't need to follow the urine while I was in remission. After reading in a journal article about the importance of screening for M protein in the urine for "light chain people," I remembered I had a standing order for a 24 hour urine so I did one and took it to the lab. The doctor only ordered the serum (which was negative) and it should be an interesting conversation at tomorrow's appointment.

Sometimes I get really tired of having to figure everything out. Still all in all, my Dr is really OK because she isn't afraid to consult with people like Dr Durie or Dr Anderson. But it sure would be nice to know that things were always done correctly or that diagnostics were 100% accurate. I've learned so much about medicine since I have been sick. The best I can say is that there is no certainty around anything... it must drive the docs as crazy as it drives me. My Myeloma is rather atypical in that at diagnosis I only had 8.5 % plasma cells in the BM, no lytic lesions, and very small amounts of M protein in my blood and urine. Still the diagnosis was made due to some binucleated plasma cells, my anemia, and my kidney failure.

For the past several weeks, I've been experiencing significant edema. I'm unclear as to whether it is a result of Thal or Aredia since both can have the side effect. My Thal dose is a maintenance (50mg) and pretty low so I tend to lean more toward it being the bisphosphonate. I don't think it really matters to me in reality. It is annoying, but certainly not enough to make me give up either med. I do miss my ankle bones, however. Funny how vanity slips away when you have MM. I can remember when I would spend hours at the hairdresser or diet if I gained a few pounds. Now I'm just glad I have hair ( it is starting to grow back) and I eat things that are healthy without worrying about what I weigh.

Perspective... Recently, have been experiencing a lot of bone pain especially in my hands when I wake up in the morning. Additionally it is difficult to walk after sitting for any length of time. I can't bend over anymore and that is distressing... I never realized how much bending we do in the course of daily living. I left work early today. I was tearful when I heard the news that the dreaded M protein had returned. I'm fighting like hell to stay alive at least until my child graduates high school. I'm a single parent (adopted this child) and worry so about what will happen to my girl if I die before she can take care of herself. I'm a therapist by profession so I spend a lot of time trying to deal with my fears and my anger. I think it is important for all of us with MM to keep fighting the good fight and allow ourselves time to grieve the "normalcy" we all took for granted before we were diagnosed.

I'll try to update this board on a regular basis. I know reading all the other stories has helped me immensely and I hope that my input can help someone else. That is what it is all about, isn't it? We are here to support each other and learn from each other.

September, 2002: I am feeling very "achy" and no one can figure out why. I get a lot of "I don't knows" about a lot of things lately. I still have no discernible lytic lesions (and that is good), but I would like an MRI because I read that it can pick up lesions the X rays can't. The doctor doesn't think it is necessary. The doctor doesn't live in my body trying to work full time (to provide and maintain my insurance) and raise a 7 year old with no energy and daily pain.

When last I wrote my M protein by urine electrophoresis had spiked. It went back to not detectable for a month and then to 0.1g last month (same spike as in June. I don't know what to make of this erratic stuff.

I am still on Zometa and Thal (50mg/day) as maintenance. My blood counts have been normal for about 6 months. Just that nasty on again off again M protein in the urine... pesky! The doctor couldn't explain it (none in the blood small amount in urine) so I researched it and ran across an article by Dr Durie in which he stated this was common in light chain Myeloma. When I told her, she seemed to agree.

I was heartened by a statement made by Dr Anderson (of The Dana Farber) recently. He said he felt it highly likely that multiple Myeloma would obtain chronic disease status in two years or so. Let's hope Dr A know what he is talking about.

I've been reliving my life a lot in the past several weeks. So much of it is satisfying along with several major boo boos which changed its course dramatically. So I've started a journal for my little girl. It's a history of how decision making can enhance or degrade your life. I hope she gleans some good skill from it.

Still trying to honor Gandhi by becoming that which I wish to see more of...its a definite process!

August, 2004: Since I last wrote many events have impacted the course of my Myeloma. I found that the SPE and UPI/UPE had been inadequate in tracking my MM and whereas I had been thought to be in remission by 4 different docs, it wasn't until I lobbied for the FreeLite test, changed docs, and we began tracking my free light chains differently that I found out there was no remission! By the time the conversion calculations were done, my numbers were high and I was not in good shape, having had no chemo for over a year.

Tracking by FreeLite has been a godsend! I was able to partner with my doc on the BLT-D abstracts and responded quickly to that protocol. We were able to progressively take the dosages, down and for well over a year I enjoyed a FreeLite confirmed at very low doses which preserved much of my quality of life with my 9 year old adopted daughter.

By the time of "relapse [July 04)" I had been taking 50Thal 6 days week, 14mg Dex twice month and 500 Biaxin BID. At the small relapse, the Thal increased as well as the back to 40mg Dex once a week and the next doc appointment is 30 Aug 04 to assess, If the BLT-D train has left my station, I'll be looking closely at low dose Cytoxan and a consult with Dr Durie.

On another note, I have worked diligently with my nephrologist and after ceasing the bisphosphonate (I have no lesions and good bone density currently, but have been diagnosed with early stage renal disease), my creatinine has run from 1.4-1.7 consistently. This is quite an improvement from the 3.3's if several years ago.

I still have one atrophied kidney from an infusion nurse who couldn't see to set Zometa for one hour and put all of it in in 5 minutes. The subsequent comparative ultrasound showed unbelievable damage. Word to the wise... have the pharmacy calculate infusion times and write them on the bottle if you are changing any protocol in that infusion room. It won't return to normal. Down the line I expect a good fight for transplant and have already begun my research and hard copies to plead my case.

Emotionally, there have been several incidents which have completely changed the direction of my life. As a psychotherapist, my work was one of the most important parts of my soul. Yet, cognitive changes from Thalidomide forced a retirement upon me. (One really does want their therapist 100% present)! With that event, came the income loss, the Medicare approval with the 2 year wait, the huge COBRA payment, the dismal prescription coverage, and the SSDI check which would formerly be just slightly more than needed to cover my daughter's private school!

Yet, necessity is the mother of invention! I can't work, but I can volunteer to supervise a free clinic program here with the "supervisor" having someone to run things by now and again to make sure the cognitive effects are in check for these duties. I can no longer pay for private school, however, upon asking, myriad scholarships came to my daughter (not only due to my cancer, but to who she is as a person and scholar). Thus, my daughter's academic life has not been disrupted to the extent that her emotional life in living with her mother's cancer has. Opportunities/scholarships for summer camp abound, so we can both avail ourselves of respite, and this has immensely helpful.

On that note, my 9 year old is a stellar example of grace under pressure. Both of us are aware that there is no time for "fussin' and fightin'". We work hard each day to make it a day to remember, even if we are just watching "kid movies on TV and popping popcorn". Of course the popcorn has to go. The braces came on last week, graciously donated by the dentist pro bono. Somehow through all of this she retains the ability to just be a kid. I love her imagination, her wit, and her spirit!

One of the points I am trying to make with all of this, is to find the ability to let people in. All my life, I have been fiercely independent and "taking care of business"... taking care of everything really and by myself. In the past several years, I've learned to let go. I've learned to let others in and help. I've learned that so many people have resources emotional, financial, and love which to help you through the hardest of times, if only you open your heart to them.

I am a lucky woman! Without MM I might have missed the abundance in my life. It could have just slipped right through my fingers without a second thought, as I went about helping others obtain their best life. It's nice to know that I am now, also, working on obtaining my best life.

May your lives be ever fruitful and loving. Until there is a cure, we have each other (and if I may say... we have the IMF, always!)

Blessings, Barbara

 

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