Diagnosis



25 Jul 10

That sure doesn’t sound like such a long time, does it? Heck, the typical home mortgage is 180 to 360 months. Even some car loans are in the range of 84 to 120 months.

But when you’re talking about cancer survival it’s an entirely different story. It is a long time. And I should know, because that’s how long it’s been since that fateful blood test that led to my diagnosis of mantle cell lymphoma (MCL).

That’s 100 months of living with a terminal illness, 100 months of blood tests (121 total) watching my numbers gradually degrade, and 100 months of stress, waiting for the next shoe to drop.

But when I read the results of trials, which consider remissions of 6, 12 or 24 month as being good results, along with the numerous problems and complications experienced by others, I can’t help but also think of 100 months as being a milestone. Especially considering I haven’t had any treatment, and still feel like I’m in pretty damn good shape. I even rode my bike 70 miles this morning, and managed not to get dropped [until the very end], despite a pretty rapid pace. Of course I am pretty tired right about now.

I know I’ve obsessed over this before, but I can’t stop wondering how I’ve managed to be so fortunate. Like I’ve said many times before, if I didn’t know I was sick, I wouldn’t know I was sick. And I doubt many others would think so either.


Filed under: Cycling,Diagnosis,Life,My MCL

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16 Jun 10

Another person expressed some concern today, after my last post, that I may be starting treatment soon. Well, let me clear up any confusion. That isn’t the case.

It’s just I get into these moods every now and then, when I can’t help but question how much longer can I be so lucky? Especially when I look at Edie, and so many others in similar situations to me. Why have I been so fortunate to be so active, and not require any treatment for over 8 years, despite having a terminal illness?

It just boggles my mind, and I find it difficult to believe it can go on much longer, but ………….

Anyways, I had an appointment with my oncologist today to review my latest BMB and cytogenetic test results, and guess what? I have Mantle Cell Lymphoma.

Actually I knew that all along, but if you remember back in April, I posted how my new oncologist was convinced I had Splenic Marginal Zone Lymphoma. Well, he’s now convinced otherwise.

We also discussed my low hemoglobin/fatigue, and if it is the result of iron deficiency, or just a manifestation of my lymphoma. He’s convinced, based on the my ferritin levels in the blood, iron stores in the bone marrow, along with some other tests, that I am not iron deficient. [And I agree.] As further confirmation he also checked my haptoglobin levels which were actually higher than normal. It would have been low if I were iron deficient.

(We also discussed depression as a cause of fatigue, and suggested drugs, but I refused to go there!)

So I think it’s safe to assume I’m not iron deficient, but if I wanted, he suggested I continue taking an iron supplement (65 mg of elemental iron per day), for another two months, and see if my hemoglobin increases any, as even more confirmation of that fact.

I’m gonna have to think about that for a bit though.


Filed under: Diagnosis,My MCL

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3 Apr 10

Yes, it’s been 8 years [a year and 8 days to be exact] since my diagnosis with Mantle Cell Lymphoma (MCL), and I barely even realized it.

Even to this day, it’s hard for me to comprehend the fact I was diagnosed with a very aggressive lymphoma, with an average life expectancy of only 5 years.

Of course one of the drawbacks with life expectancy predictions for a terminal illness, is there is almost no way of knowing how long the person had the disease before diagnosis. Was it one year, two years etc? It’s difficult to know, especially with the health care system that exists in the US, where a large portion of the population is excluded from the health care system, and others can’t or won’t go to see a doctor, because of the cost, until it’s too late. [OK, that was my political rant for the day.]

Just how many other cases are there like mine? How many others are walking around with cancer, and don’t know it?  If I hadn’t gone for a physical exam that fateful March day in 2002, I likely wouldn’t know I was sick. Heck, I still find it hard to believe I am sick, and I have all the documentation to prove it.

And how many people are diagnosed early on with a terminal illness, and get treatment prematurely, because of a fee for service health care system which encourages unnecessary treatments, when waiting and watching would have been a better approach (such as in my case), and then die prematurely due to complications of the treatment. [OK, so that's two political rants. I couldn't help myself.]

Who knows? I sure as hell don’t, but I still bless my lucky stars I did learn early on. Otherwise I likely wouldn’t have done many of things I have done since my diagnosis.

The only problem now is, the longer I go without feeling sick or needing treatment, the more complacent I’ve become, sometimes thinking I’m not really sick, while at the same time becoming more depressed with every blood test, thinking treatment is just around the corner, and the less likely I am to live life to the fullest. Some how I have to put a stop to that.

OK, enough feeling sorry for myself. Time for a bike ride.


Filed under: Diagnosis,Health Care,Life,My MCL

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13 Jan 10

It’s raining outside, and as you might expect, I am bored [big time].

So I thought I would give you a little taste of some of the discussions I’ve come across on the various list serves I belong to in relation to my MCL, which I made particular note of, concerning medical care and what ever.

In this first post, a woman is complaining about the poor care she is receiving from her primary care physician (PCP).

I left my PCP’s office in tears today. I’ll give you a little background, when I do go I usually have to wait 1 to 1/2 hr to even see him, then, he’s with me for about 2 minutes. <snip>

Anyway, I’m in constant pain, I mean constant, with the RA, the joint pain from the chemo, the bursitis and degeneration in my hip, the carpal tunnel in both hands, all of which happened after chemo. The Doctor came in and said “what’s going on today” I said “I’m in pain” his reply “again?”. He says “I’ll send someone in with your prescriptions” and started leaving the room, I said “wait” and he replied with “I’ll be right back”. When he came back I asked if he has even read my chart concerning all the pain I’m in, he said yeah but he was more concerned with the “cancer”. He proceeded to leave the room again and I said I wanted to talk to him about some things, again, he said he’d be back. When he finally came back I asked him about a pain management program because I want to work, which is getting harder every day. He said “let’s wait until after your pet scan and we’ll worry about it then” I just felt like he was saying let’s wait to see if worth the trouble or not or let’s see if you’re going to live first, then he left the room, all this happened in about a 2-3 minute span.

<snip>

I have to go to Doctor’s “in network” so my options are kind of limited, but I don’t think I can ever see that Doctor again after today!!!

That’s unfortunate, but doesn’t she understand that as reimbursements continually get cut to health care providers by the government (Medicare/Medicaid), and by health insurance companies [to increase profits], some doctors don’t always have the time to be as concerned, and they just aren’t going to perform to the best of their abilities.

Just think about that for a minute. How would you feel if you were asked to work for less money each year?

And here’s another email from some one who wants his insurance company to pay for a visit to an out of network doctor, when his plan doesn’t give him that option.

I was wondering if anyone has advice for an appeal letter to send to our insurance company to appeal our denied request to go see an out of network physician for a second opinion. If possible please also forward my wife on any suggestions or advice as we will be working together to come up with a letter.

I guess he must think he’s in a country like France or the UK where you can see any doctor you choose. But he’s not. He’s in the good old US of A, where we have enough trouble just getting the benefits we’re entitled to, let alone trying to squeeze the for-profit health insurance industry for benefits we’re not entitled to.  GOOD LUCK! (I might also had some of my comments back to him weren’t well received by a few members of the message board.)

And finally, there’s even some religious undertones which go on here. One lady was upset because her cousin, diagnosed with non hodgkins lymphoma refused treatment, and just wanted to die. A lot of the posts were supportive, but this one post got my ire.

The neighbor down the street, at eighty-something had had successful heart surgery and seemed to be on the mend after months of suffering and several hospitalizations. She was diabetic but then suddenly developed kidney failure. She out and out refused dialysis. Wouldn’t discuss it and her conversation amounted to, I’m ready to die. Period. End of story. Her husband and friends’ pleas were ignored. Then in her final two days’ dying in an extended care facility she regretted her choice (told my wife who works there). Rational decisions aren’t everyone’s choices. Sad to say.

Anyone else think this post is contrived, and designed to advance an agenda?

Oh well, like I said, I was bored.


Filed under: Diagnosis,Health Care,Life,Politics

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