About Lymphoma | Advocacy | Art | CAM | Clinical trials | Doctors - Experts - Centers | Guidelines at Diagnosis | News
Risk Factors | Side Effects | Statistics | Support | Symptoms | Tests | Treatments | Types of Lymphoma

Search Site         Guidelines at Diagnosis | About Clinical Trials            How to Help!

Patients Against Lymphoma

 

Support > Patient-to-Patient > Patient Experiences & Guidance

xxx Story

Immediately after a bad case of poison ivy that heavily involved the skin of my right orbit in the Summer of 2001 I had swelling and bulging of my R. eye along with drooping of the R. eyelid that had remained until recent treatment. 

Every summer since, the dermatitis associated with poison ivy has come back. Two summers ago I went to a doctor for treatment after the dermatitis had done its' worst and last summer I could "feel" the poison ivy effect coming again so I went for earlier treatment and halted the dermatitis with prednisone. The poison ivy issue may be one big "red herring" but the coincidence is compelling.

By the end of last summer I decided to approach my doctor and complain about the cosmetic defect involving my R eye. He hadn't noticed it until I drew it to his attention. He didn't seem too concerned as I only had a cosmetic complaint. He was more concerned about my back; that's been my main health issue for most of my life (but that's for another list). 

He sent me to a plastic surgeon that asked a few questions and said he wanted a CAT scan. A few weeks later the CAT scan showed a rather troublesome lesion that occupied most of the orbit. He gave me the CAT scan and immediately referred me to another plastic surgeon at Sunnybrook hospital in Toronto. 

The CAT scan was passed on from him to an ophthalmologist. All three doctors were immediately impressed with the lesion but they all remarked that whatever it was likely wasn't cancer as it wasn't behaving like cancer. The lesion was happily co-existing with all ocular structures. All it was doing was causing proptosis of the eye (bulging).

Before they were willing to do anything else at that point they wanted an MRI. A non-emergency MRI places a patient on a waiting list in Ontario's socialist health care system that is anywhere from 6 to 18 months long! (they are acting to improve this, btw). I wasn't about to wait; I'm 42, self-employed in the pipe organ business and have ........7 children.......... the oldest is 10! 

I got on the internet and found that I could get an MRI in nearby Buffalo, NY for about $750 CAD. I didn't blink and 3 days later I had the MRI pics back to Sunnybrook.. The MRI showed basically the same thing as the CAT scan. It was reassuring to see the absence of brain tumors.

In Canada all health care must be paid for by public insurance. This is a wonderful thing to have, but at the same time, it's illegal to operate, for example, a private MRI clinic. This is REALLY STUPID! Anyone in Canada who wants any form of private health care can simply cross the border, be treated, and leave untold number of Canadian dollars in the US when it could be left in Canada. 

Unless the Canadian government controls Canadians crossing the US border (they wouldn't dare) the idea of a 100% publicly funded health care system is utter nonsense. If a Canadian is sick, has the money and can't be treated in a timely fashion in Canada NOTHING will prevent him/her from getting health care in a jurisdiction that allows private health care. So why don't they accept the situation for what it is and keep the money in Canada? I've given it much thought and investigation. 

So far, I've concluded that morons govern Canadians." Nice" morons to be fair, although I'd not be surprised if some federal/provincial officials were heavily invested in over-the-border private health care clinics! Otherwise, it just doesn't make sense.

It was the ophthalmologist who finally lifted my right eye lid for a peek at the tissue showing up on the pictures. I know that he immediately knew what it was and he commented that it might not be a bad idea to have a complete series of MRI's in Buffalo if I could manage it. He was able to easily and painlessly obtain a biopsy sample. He also commented that I should expect to be receiving radiation therapy. 

I had a series of tests including a chest x-ray, blood work, a "gamma scan" and another CAT scan to rule out the possibility of a primary source of NHL. The tests were negative. The biopsy result was small B cell lymphoma of MALT type. It was also "indolent". There really wasn't a speck of bad news.

I was referred to a radiation oncologist at Sunnybrook. She told me I was to have 20 exposures of radiation at 3.5 (whatever the heck the measurement units are) over a 4 week period and that I should expect the following side effects: Slightly burnt looking skin around the affected area, a "gritty"feeling around my eye, dryness and some hair loss. 

All of these conditions she said would be temporary. I was also told to expect, at some point in the future, a cataract. Within 5 radiation exposures I was shocked and delighted to accidentally discover my right eye had almost assumed it's normal position. I had decided from the beginning of my treatment to take a picture of my face every day with the help of my digital camera. I backtracked the pictures stored in the camera and the pictures confirmed what my fingers felt when I arrived home after the 5th exposure, yawned and "rubbed" my eyes. 

By the middle of the treatment regimen my facial symmetry had returned and I would've been happy to stop then and there. Then came the 3rd week: "Oh oh, lost some of my eyebrow". The next day I lost some hair from my temple and my skin was reddening significantly. I also experienced some pain inside my head that the oncologist could not account for but she prescribed mild pain medication. 

A few days after the end of my treatment found me in the worst shape. The radiation had burnt my skin to a nice "cooked lobster" hue. They were a bit surprised about this but I warned them that I burnt very easily and quickly under the sun. I lost a fair amount of hair from the back of my head. It's presently growing back pure white or perhaps blond. This is a little distressing for me as I've been blessed with what's known as "executive style hair" and a perfect balance of brown and gray that makes me <look> somewhat credible when properly attired (grin). 

Oh well, it's at the back of my head and I can't see it so it really doesn't bother me. Beyond occasional uncontrolled tearing and peeling of skin, I've experienced no other side effects.

I'm scheduled for a CAT scan this June to see if there's anything left of the tumor. I have a gut feeling it's "toast" and the pics will show everything to be in fine shape. 

A few observations and questions for any that may have survived my egomaniacal monologue to this point: Should I expect this 'thing" to come back? 

Was radiation the only treatment available? It was the only treatment offered?

I have a fair number of closely related "blood" relatives, numbering about 70, and about 20 are older than I. Amongst the group of 70 there have been 3 occurrences of cancer. An older aunt was diagnosed with stage IV NHL. She's in excellent health 6 years after treatment. 

My older brother developed a melanoma but they apparently treated it in time and he's in fine shape as well. Then there's myself. There have been a few occurrences of the not so dangerous form of skin cancers that are hardly worth mentioning; most of us are very fair skinned. So, for a group of 70 blood relatives I think we have a good record with cancer. 

Or am I wrong? I'm obviously concerned about this as I've procreated 7 children and my wife's a natural blond. (I really should have married someone with a darker complexion, but....). What about the possible poison ivy link? Every doctor I've talked to has brushed-off poison ivy exposure/symptoms as simple "contact dermatitis". The region I live in is swarming with poison ivy and I continuously hear of neighbors and former neighbors who are revisited annually by poison ivy symptoms. The doctors I've referred to live in Toronto where poison ivy is almost non-existent and they seldom treat anyone who's been exposed to it.

Thanks for reading. Comments and observations sincerely appreciated.

Andrew J. Mead
RR 4 Port Hope, Ontario, Canada

 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright © 2004,  All Rights Reserved.