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Ray Jones
06.14.99

Rye, NH

1929 / Class of '96 / Multiple back fractures / Died 6-14-99

My Myeloma story begins on a ride at EPCOT Center at Disneyland. Dec 1995, then age 66, I should have known better! The ride had a large sign which stated, "IF YOU HAVE A SORE BACK OR ARE PREGNANT -- DO NOT GO ON THIS RIDE!" My back had been a little bit sore, which I had attributed to running my snow blower before going south. Halfway through the ride I was in sheer agony. By the time I returned home to NH, I was hardly able to move. My local doc who happened to be an Oncologist and a Hematologist diagnosed the MM immediately.

I had 3 fractured vertebrae, T8, L1 and L3. I was offered Radiation therapy, but I declined. I had had Prostate cancer in 1988 and had radiation therapy at that time, along with a radical prostatectomy and bilateral orchiectomy. The Oncodoc started me on Melphalan [initially 14 mg] and Prednisone [100 mg] for 4 days once a month. After the third month, the Melphalan was increased to 18 mg. I weigh 220 lbs. Some months it would be 5 or 6 weeks before my blood had recovered enough for the next treatment. Had a couple of infections and took several courses of antibiotics.

By May '96, my back had healed enough for me to terminate the pain medication. I had been popping Percocet like candy. Have not taken any pain medication since. I began Aredia treatments in July '96. 90mg in 500 cc saline infused over 4 hours, every 28 days. Had mild flu-like symptoms after the first 2 Aredia TX, but since then - nothing.

There are plenty us us out here who are living a quality life with this dumb disease. We are enjoying each day in spite of the MM. It may take a while to get it under control, but it can be done. YOU can do it, too.

I was diagnosed in Jan 96 at age 66, had 3 fractured vertebrae and was one hurting guy, I'll tell you. Oncodoc put me on Melphalan/Prednisone. Had 14 treatments over the next 18 months. Took until May 96 for my vertebrae to heal enough for me to move around and quit the pain meds. Began Aredia [wonderful stuff] in July 96. Have had 23 treatments so far and plan to continue as long as I am alive!!!

My bones have healed. The x-rays show the holes have filled in!!! My back is strong enough for me to do all the normal things. My blood is slowly recovering - am still borderline anemic, but I have enough energy to play golf and go after the stripers in the river.

The big thing about this disease -- MM -- is to GET SMART! Learn as much as you can. Join the IMF; get their Magazine -- back issues, too. Suck up everything on MM on the internet. One of the best things to get is Tony Juliana's Alphabet Soup Handbook at http://home.earthlink.net/~mjuliana/myeloma -- Load your printer first 'cause it's 58 pages!

Once you learn about this disease, you can come to grips with it. As we used to say in the Submarine Navy, "Don't get mad; Get Even!" You can beat this @#$% . A positive attitude and lots of prayers can put you on your feet. There are over 700 of us on this list. We're here to help. Just ask!

Healing love to you all.

Ray Jones[ey], Rye NH, "former submarine person"
Date: Thu, 29 Oct 1998 15:44:49 EST


Hi Folks,

Have tried to inject some humor into an otherwise sordid experience.

THE CASE OF THE MYSTERIOUSLY DISAPPEARING BLOOD CELLS

Chapter 1. It was a warm sunny summer day in June, 1998. The patient's wife and daughter had just returned from a golfing vacation in Scotland and brought the patient four bottles of premium single malt scotch whiskey. The patient began a nightly ritual of having a "wee dram" [about 4 ounces] neat with two ice cubes. But alas, he was not very generous and did not share with anyone else. [Perhaps this was to be the cause of his punishment!]

The patient went for his 23rd Aredia treatment. His WBC was 4.5. It had been 4.6 the month before. His RBC, hemoglobin, hematocrit and platelet counts were below normal range, but had been there for some time. He had terminated his MP therapy after 16 treatments a year before in July 1997 and was feeling fine although a bit "anemic".

Chapter 2. When the patient went for his Aredia treatment the end of July '98, his WBC had dropped to 2.8! Was ist los? The nightly savoring of his cherished "wee dram" continued until the supply was exhausted in late August. The WBC on 19 Aug was down to 1.9. It was not determined who was the most perplexed -- the patient or the Oncodocs. The patient did confess to the oncodoc that he had been "tippling" but was now dry and on the wagon. The Oncodoc, who did not drink, was not happy.

Chapter 3. The CBC tests became more frequent as the WBC continued to drop -- to 1.6 on 8/31, to 1.4 on 9/4. On 9/1, the patient had a BMB taken. A week later he obtained a copy of the BMB report. It did not seem to say much. Neither of patient's Oncodoc partners discussed the report with the patient. The WBC continued to drop -- 1.3 on 10/2, 1.1 on 10/15.

Chapter 4. Then on 10/26, the WBC reached 1.0. The local Oncodocs suggested a consultation at Dana Farber. By this time, the patient had been cruising the Internet and taking the Internet Final Exam for Hematology 632. Such words as Bone Marrow Failure, Aplastic Anemia and Myelodysplastic Syndrome were now part of his vocabulary. However, he had yet to hear one of these expressions come from the mouths of his Oncodocs.

Chapter 5. The evening of 10/27, the patient was reviewing his copy of his records. There on the 9/1 BMB report were some very unusual numbers and notations. The blood sample studied by the Pathologist had a WBC of 15.44 and a Platelet count of 34! That patient was listed as Thrombocytopenic! This Patient went bananas!

He called the Oncodoc's office, asked the secretary to pull the BMB report, put it under the nose of the Oncodoc and dialed my telephone number! When next my phone rang, it was the Oncodoc with his tail between his legs. His comment: "I guess this proves we are all human." I was a marvel of self-restraint. I did not need to remind him that he had obviously not even reviewed the BMB. I did not ask him if he still knew how to read. But boy, was I ticked off. [In my days as a Navy Captain I would have had some other words for him and this.]

Chapter 6. So the patient has an appointment with a Dr Schlossman at Dana Farber on November 10. [Anyone know this Dr?]. The local Oncodoc still prefers not to start any intervention to restore the WBC. I asked him when I should make reservations at the local hospice. He was not amused.

To Be Continued - - - - - Stay tuned. And now a word from our sponsor.

Have you given to the IMF's Myeloma 200 campaign. If not, Please do so. If you have, Please do so again.

Healing thoughts, love and prayers to you all,

Ray Jones[ey], Rye, NH


Fri, 15 Oct 1999: Ray passed away on June 14th. His body would not for some reason absorb the platelets and he started bleeding. They could not stop the bleeding and then they found he had leukemia. He found a wonderful doctor at the U. of Mass. Hospital in Worcester and he was there for two weeks while they desperately tried to save him but nothing worked. 

It was quite peaceful and our three daughters and their families were all there . I was with him every day. My name is Marlene and I am his wife. He died the day after our 45th anniversary. We all miss him so much.

Good luck to you...  Marlene


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