Re: What do you say???
You can do plenty.
I have survived Lymphoma twice.
There are three varieties, Hodkins, Hon-Hodgkins, and Mixed Cell, which exhibits the characteristics of the other two. The hardest to treat, and therefore most serious, is the Non-Hodgkins. I had the other two types.
Treatment options are Surgery, Radiotherapy, and Chemotherapy, and I have been treated with all three. I reached stage 1A the first time, and stage 3B the 2nd time. My recovery probablilities were considered 50/50 that time.
The disease, in general, progresses slowly, and many patients and their families tend to think that the Oncology people are moving too slowly.
<span style="font-style: italic">I won't sugar coat this.</span>
The diagnostic process is long and involves testing and surgeries that are very uncomfortable. Typically, diagnosis follows a six month schedule, treatment about a month for Radiotherapy, six months for Chemotherapy, and surgery involves a minimum of a week's stay each time.
Because the Lymphoma progresses so slowly, early stage Lymphoma may not present any seriously uncomfortable symptoms.
The cure's the thing.
Assume that in the case of a successful treatment and diagnosis, the process will take about a year to reach initial recovery, and altogether about 5 years to reach full recovery, where life is much the same as before.
I reached full recovery from Mixed Cell, then was diagnosed with Hodgkins in my fifth year, and went through the whole process all over again. I did not have a relapse, I had two separate kinds of cancer. As far as the disease is concerned, I recovered fully and am at about ten years in remission from the latest involvement.
But I do have problems from the treatment itself.
Specifically, the Adreomycin, which was one of the four-drug chemo cocktail that was used then, has impaired my heart function. It attacks the left ventricle, scarring the muscle tissue. My left ventricle is only partially functional, and as a result my heart function is rated at a 25% ejection fraction. Normal is around 60%.
This is a very common, expected outcome from the chemo; the thinking being that heart problems down the road are better than dying from cancer then and there. They can treat heart problems, but dead is dead.
I also had a serious heart attack, which causes me memory problems in addition to requiring a quad bypass and the implantation of a pacemaker/defibrillator. Although the attack cannot be placed in the side effects column from the cancer and its treatment, there can be little doubt that they played a part.
In terms of impairment, I am somewhat fit and enjoy moderate strength. I can do some of pretty much everything physical that the normal person, whoever that is, can do; but I just can't do it for very long. I can walk a few hundred feet on the level, and then, I have to sit and rest for about five minutes while I regain my breath. My limitations limit my ability to regain better fitness. I have gone through cardiac rehab twice, and truth be told, could probably benefit from doing it again. Rebuilding fitness with underlying congestive heart failure is not a simple task.
Lymphoma is typically a disease of the young and the old. Middle age onset like mine is atypical in the general population and very typical in Vietnam Veterans, with strong and VA-acknowldged linkage to Agent Orange exposure.
Prognosis is good, the treatment regimens are well established, and testing and followup are very effective.
The treatment knocks you on your ass and makes you very vulnerable to opportunistic infection. Lymphoma is, after all, cancer of the immune system itself. Unlike other cancers, where the immune system is recruited in the fight; with Lymphoma, it's down for the count unless and until you recover, and then it's fighting with one hand from then on. Forever.
My immune system is permanently impaired, somewhere between normal and that of an AIDS patient. I am careful around potential sources of infection, and I am one of the folks who are strongly advised to get annual flu shots.
Expect hair and weight loss, nausea is typical but I never really had it, and the weakness associated continues to progress for at least a month beyond cessation of treatment. By that I mean, you keep getting sicker for another month, from the treatment, even after it's stopped. Then things turn around and it all gets noticeably better by the day.
When treatment fails, it's usually either because it was not diagnosed early enough, or because the patent becomes too weak and ill from the treatment to be able to complete the treatment.
How fit and healthy you are going in has a strong bearing on your outcome; so folks who allow their fitness to fail are prime candidates both to get cancer, and to die from it.
To be clear on this, there are three ways to treat cancer. Cut it out, burn it out, or poison it out. The tactic is to do that to a degree of intensity that just barely fails to kill the patient, in the hope that the cancer will die before the patient does. There is nothing nice or easy about the process.
The patient's role is simple. You get on the merry-go-round and you don't get off until they tell you to. It's not a fun ride. You will learn things you never wanted to know. Most of them are about yourself and your true character.
If you didn't have courage going into it, you will either find it, or you will die. Period.
The relatives' role is much harder. You must convince the patient to walk into that lion's den, and keep on walking into it, until the lion rolls over and plays dead. No shortcuts, no breaks, no vacations. If that lion gets back up, you're in deep dudu.
Get it done, or die.
Death will cease to be that great unknown, but wlll become, instead, a close and personal acquaintance, whom one respects, or else.
Lymphoma has changed my life. It wiped out my health insurance right about the time I was halfway through the second bout. The uninsured expenses cost me my business, my retirement, my savings, my home, and my lifestyle, which was moderately comfortable at the time. Ten years later I am still paying down indebtedness in the high 5 figures, and that's not even talking about Celia's uninsured med bills, which originally approached about a half million. We got a ton of government assistance, with about a 60-70% writeoff and paydown.
My life is simple, I pay medical bills, and hold back just enough to keep us both fed, housed, and clothed. Sometimes we find a windfall and I can afford to buy some reloading components. My sole source of income is SSD and a partial VA Disability.
Get this straight. We're doing fine, and we don't want anyone reaching into their pockets for us. You already did that and I am flatly not going to go to that well again. Ever. We have our life, we're hacking it, and we're managing to like that life a whole lot. There is no cause for concern, and if there was, we have family and we'll git 'er done.
When a kid comes down with Lymphoma, the odds are extremely skewed in the kid's favor. It's not fun, they'll never forget it, but ten years from now, they'll be living a normal life and will probably only think about it maybe once every two weeks. They will not be well advised to give blood or to be an organ donor. Aside from that, you could look at a pack of folks and not tell who did and didn't have Lymphoma ten years ago.
That's it, and it's plenty.
Greg
