Well the new blog design has been up for at least 2 days now, and not a single comment. What gives? I must have worked several hours getting it all set up properly, and I know at least a few people have been logging on.
So how about some feed back on the design. Good, bad or even a suggestions on how to improve would be appreciated.
Last week Edie had appointments with her regular oncologist and orthopedic oncologist. Now that the radiation treatments are over, it’s time to decide what additional steps need to be taken to get through this and eliminate the back pain.
The consultations produced a mixed bag of news.
Since Edie is still asymptomatic, except for the back pain from the compression fracture in the T2 vertebrea, and the only evidence of the disease shows up as a small precentage of plasma cells in the marrow, this suggests a smoldering or indolent form of myeloma, and there is no need to rush into any chemotherapy just yet.
Kyphoplasty or vertebroplasty is out of the question to relieve the back pain, since the bone is fractured, i.e. nothing to keep the cement in place. Fusion of the bones or other operation seems so complicated, dangerous, full of potential complications and without guarantees it would do any good, it just doesn’t seem worth pursuing.
Plus since it could take from 4 to 6 weeks to see any benefit from the radiation, it seems the best course of action for now may be to just do nothing. Hopefully the radiation did the trick, and the bone will start to heal relieving some of the pain, but in the mean time, the oncologist authorized an epidural (which she had on Thursday), and authorized the use of bisposphonates i.e. Aredia or Zometa.
The bisphosphonates are used to help the bones heal, and to prevent further deterioration of the bones as a result of the myeloma. There are potential serious complications with these drugs, but the oncologist believes they can be minimalized with good oral hygiene.
Only time will tell.
Well, ok, the Long Beach, CA, Senior (Age 54 – 59) Mens Amateur Champion (low net). I shot a net 214 (272 gross) at the 3 different Long Beach Courses. The best part, in addition to the $150 Gift Certificate, was the trophy. It was an engraved wine carafe. I guess they knew I liked wine.
You can see all the results by going to the LB Golf Festival Website and navigate to the Senior Amateur Championship site, or you can just click on the latter link if you want to save time. I was in the B-Flight.
Lots of controversy surrounded the tournament this year, as one participant, in my age group, was disqualifed for signing an incorrect score card.
Before hitting a ball out of a sand trap, he went around to the other side of the bunker to to get a rake. The rake left a mark in the trap, and without thinking, he raked the trap before hitting his shot.
I didn’t realize it, and obviously neither did he, but that is against the rules. He was told it was a one stroke penalty, and added one stroke to his score. Unfortunately it’s actually a 2 stroke penalty, and he was disqualified for signing an incorrect score card.
Oh well, it pays to know the rules I guess. So with at least part of that $150, I’m going to buy a rules book, and study up. Don’t want to get into the same predicament next time.
Oh and BTW, in case you were concerned, I still would have won the tournament. He was 5 strokes off the pace after the second day.
In my last post at the Medical Blog Network, I talked about patients being proactive, and sharing responsibility for their care. Even Steve Beller PhD talks about it in his latest post. But none of this could have been remotely possible without the aid of the internet, and it’s ability to put us in easy contact with doctors, patients and others experts around the world to fill voids and keep up with the latest research.
So I can’t help but ask myself, how did we ever got along before the internet?
I don’t know how many of you in the cyberworld were around prior to the internet becoming part of US and world culture. I know that I was, but what is so amazing about that statement is, I really can’t remember what it was like without the aid of the internet. The internet has become such an integral part of my life, I really can’t imagine a time without it.
How did we make airline reservations? How did we figure out how to get from point A to point B? How did we get along so well without email? But worst of all, what did people do when they got sick before there was an internet? How did they know whether their doctor was prescribing the correct treatment protococals? How did they keep up with the latest advances in medicine? How did they even know if they were diagnosed correctly?
I bring this up, because of my experiences with the internet. If it weren’t for the internet, I would have had to put my full blind faith and trust in my doctor. Even for the most competent of doctors, can you imagine the pressure that put them under! No wonder so many of us still think of them as gods.
Because of the internet, I learned doctors are not gods. The are actually human beings, possessing the same human frailties and capable of the same mistakes as the rest of us. It was because of the internet I discovered that my first oncologist had little idea of what he was talking about, and wouldn’t even listen to the contradictions I put in front of him. He obviously thought of himself as a god, or he didn’t make use of the internet.
So as I was reflecting on world events this morning, I thought I would give a special thanks to all those who helped develope the internet, including the military establishment that provided the motivation for its developement. The internet just may be the single biggest factor effecting change to the face of US health care than any other single factor.
Cross posted on the Medical Blog Network – A Patients Journey
Or it’s the MCL!
Last April, I was finally able to convince my 85 year old aunt to come and live with us in California, after several years of trying without any success. She had been living all alone in Delray Beach, FL, and was not in the best of health. Her sister, who was also living there, had moved back to New York, near her kids about 3 years prior, due to poor health.
Sylvia did own her own condominium at Kings Point in Delray Beach, so we had to arrange for a realtor to sell it before we left. We managed to ship most of her belongings back to California, leaving all the furniture behind for whoever bought the condo, and giving everything else to charity. We left the condo in the hands of a realtor who sold it for $118,000 in July 2005.
I only bring up the price because, her next door neighbors just sold their condo last week for $20,000, and they were glad to get rid of it at that price. And that is not a typo! Her condo complex was hit very hard by hurricane Wilma in October 2005, leaving all the units that were in her building (consisting of 4 units) unliveable, to this day.
So am I psychic or what? Not convinced? How about this?
On March 29th, I posted to my personal blog my thoughts on fatigue, and two days later, 4/1/06, an April Fools joke surfaces on GoozNews and the Schwitzer Health News Blog about a new disease known as Motivational Deficiency Disorder (MoDeD). I did learn that it wasn’t an actual disease, but was part of a conference on disease mongering, designed to highlight
concern over the trend to corporate definitions of diseases, with a primary interest in making profits rather than a concern for the public health.
Still not convinced? Ok, I’ve got one more.
Today, just one day after posting to my weekly column at the Medical Blog Network, an article titled Is treating cancer always the best choice? there is a report on Sunday Morning (CBS 7 AM PDST), May 7th, about a woman who was diagnosed with NHL, and immediately started treatment on her doctors advice.
She died 3 months later, and the results of an autopsy revealed she didn’t have NHL after all, but a benign tumor of the thymus gland.
I couldn’t have asked for a better confirmation of my thoughts, had I made that story up myself.
I think I’m psychic! 
Finally, the last day of radiation treatment for my wife’s plasmacytoma is today, and it’s none too soon. It’s only been 3-1/2 weeks, but it seems like an eternity. While the treatments themselves have not been painful, or otherwise difficult, the cumulative effects of the treatments are starting to take their toll. Edie is having difficulty swallowing, all wine tastes terrible, most foods the same, and she seems to be sleeping (or napping) more often.
Hopefully with the end of treatments these effects will wear off, and life can return to some sense of normalcy, as difficult as that may be. But, it doesn’t completely end here. There are still more tests and potential treatments on the horizon.
Today, just before her last radiation treatment, there is the CT Myelogram, intended to help the othopedic oncologist better determine on how to proceed with the fracture of the T2 vertebrae. Hopefully it will heal on its own, as the orthopedic oncologist did not hold out much hope for any intervention type treatment, but we won’t know for sure until after the test. (This is an approximate 4 hour procedure, after which you are not allowed to drive, due to the effects of the dye used. Fortunately there is golf course close by, where I can wait out the procedure.)
Then next week, there is a final visit with the radiation oncologist, a visit to the orthopedic oncologist to discuss the results of the CT Myelogram, and another visit with her regular oncologist, to discuss how she thinks we should proceed, and to run any additional tests which might be necessary.
Out of all this ordeal, there was one note thing I thought worthy of mentioning. For those of us who have been through this sort of experience it is quite apparent, but for those who have not been through such an ordeal, or have a relative or close friend experiencing a similar situation, it may not be so obvious.
Life threatening experiences, such as these seem to transcend all socioeconomic, racial, ethnic and religious barriers. When you’re sick a certain camaraderie (a bond) developes among those in similar situations. I guess it is a way of coping with a desperate situation. Regardless of your status in life, you have something in common with the other person.
This bond can manifest itself in many ways.
It the case of my wife, it has manifested itself in a way I thought a unique. Over the years a tradition has developed among those who ride the shuttle from the Kaiser Bellflower facility to the Sunset facility (where the treatments are administered) to give a gift, on your last day, to the remaining patients on the bus. So far Edie has received gifts on at least 4 other occasions, and now it is her turn to reciprocate. The gifts are nothing of great expense or consequence, typically being candy or other similar goodies, but I thought the gesture was particularly telling.
Last night Edie spent about an hour packing all the gift bags.
Hi, my name is Marc [that's my wife Edie beside me], and I have Mantle Cell Lymphoma, a typically aggressive form of lymphoma, except it so seems in my case.
I was diagnosed over 9 years ago, and have managed to survive since then without treatment, by following a few simple rules. Eat a [mostly] well balanced diet, exercise (cycling, at least up until recently), abstaining from taking supplements or any medications, drinking 5 to 6 cups of [Japanese] green tea a day, and most importantly [lots of good wine], flossing and brushing my teeth twice a day, everyday.
I started this blog mainly to chronicle my life, putting down in writing what goes through the mind of a cancer survivor (although I have been seen straying into unrelated areas on occasion), and along the way help educate others about lymphomas and other blood cancers, and filter out some of the hype and misinformation so often associated with the internet, which unfortunately there is plenty.
You can read a lot more about me by clicking here