Still alive and kicking with Waldenstrom’s…

July 4, 2015

Have you or someone near you been diagnosed with Waldenstrom’s Macroglobulinemia (WM)?

Take it from me, I have it, and it is not a death sentence. I mean we all face the fact that we will not live forever and we don’t really know when our time will be up.

But when I was diagnosed back in the spring of 2007, either through a poor presentation by my then oncologist or by my own misinterpretation (maybe a little of both), I pretty much thought I was a goner. I thought the best I could even hope for was maybe five more years on the outside, and actually I went through a spell where I felt I might not last the week, at any given point in time. That was primarily the result of nerves and the side effects and after effects of chemotherapy.

Well it’s been eight years and I am 65 and darn near 66 (my birthday being in August) and I feel nearly as healthy now as a I did decades ago, and I have always been in good health, the WM diagnosis notwithstanding.

(My mother died a year ago at the age of 103. At one point I forlornly observed to her that she might outlive me. Seemingly without batting an eyelash her immediate rejoinder was “yup”. That was just mom, you would have had to known her. I’m the baby of the family and I knew even then that she cared and that she loved me, and I certainly miss her.)

I went through one round of chemotherapy and then it took a long time for me to get my immune system up and running. There were several multiple-week hospital stays. That whole ordeal was unpleasant to say the least. And if you saw some of the photos taken of me back then you would see that I looked older than I do now.

Read up and understand chemotherapy. My advice is don’t be too quick to choose it or a certain kind of it before you know some facts. I think I suffered more or have suffered more to date from the treatment than the disease — but apparently I had to have that chemo or things would have gotten out of hand.

The unpleasantness lasted for a couple of years at least. I really have not kept good track of that. I try not to remember too much. But even then I was no invalid and had many good days.

WM does not affect everyone the same way. My major side effect or symptom of WM was uncontrolled bleeding from my tongue. I also developed a numbness in my feet (neuropathy), and still have it, but it is not so bad that I cannot walk. I wrote about all that in some of my other posts. I think you can call up those posts by clicking onto WM on the right side of this text under categories.

I think I am correct in saying that WM itself does not kill you. But it makes you more susceptible to other problems, such as heart disease.

It would probably be a good idea to read up as much as you can about this rare form of cancer. Only about one thousand people per year are diagnosed with it in the United States, or at least that was the last statistic I read.

One problem you may encounter unless you are fortunate enough to be near some major hospital that has doctors who are knowledgeable about WM is that most doctors know little to nothing about it. Even oncologists often know little to nothing about it.

For the benefit of those readers who have read some of my past posts on me and my WM I want to assure you that I am still alive and well — feel great. I still work full-time as an over-the-road truck driver.

And I travelled to Spain on vacation last year and had a great time.

And for anyone just diagnosed I know how it is. I was shook up to say the least. But then I moved on…


Another year gone and I am still surviving Waldenström’s…

December 31, 2012

WordPress, the blog service that makes this site possible, tells me that among my most frequently called up topics is Waldenström’s Macroglobulinemia, WM, a non-Hodgkins lymphoma.

It’s been quite awhile since I have done a post on this so I figured it’s about time I did another.

So 2012 is almost history as I write this and it’s been another year of survival for me since being diagnosed with WM, an incurable cancer (they tell me), in 2007.

In fact, I have been doing great. Chemo over a six-month period was not fun and then trying to get my immune system back over the course of a year or so was touchy (the chemo having nearly destroyed it along with cancer cells) and those bone marrow biopsies were not fun either. (See more on immune system recovery at the very end of this post.)

WM affects different people in different ways and the symptoms if there are any noticeable ones are not the same for everyone.

Before I say how it affected me I want to say right here and now that since recovering not from WM but from the treatment, I have felt better and stronger in some respects than I felt in much of my life preceding. Part of it may just be that I am so grateful that I am alive and able to get around and work and enjoy life and that I no longer take good health for granted. But I still don’t eat the things I should much of the time. My long-distance truck driver lifestyle gets in the way. But I was led to believe, partly by my own misunderstanding, perhaps, and maybe in the way it was put to me, that I only had about five years left. Really. Well, I made it through year five anyway and there is no indication that I am going down hill. In fact I only see my oncologist about once every six months now and I am not on any prescribed medicine. But my blood tests show I still have WM. I have too much protean in my blood, however, my blood viscosity has been staying at a normal level. It had been way too thick previously.

While I did some research on WM initially, I did not stick with it, and I am not going to go over all that stuff in this post. You can find all that yourself via Google and other sources.

But I will recap what happened to me (I think a lot of the traffic on this site is from people who have just been informed they have WM or their loved ones):

Oh, and before that, I will add that WM is rare, about 1,500 diagnoses per year in the U.S.

And as I think I already said, not everyone will have the same symptoms and, in fact, many experience no symptoms and it just comes up on a routine blood test. But even if you don’t know you have it, it can cause things to happen to you and lead to death.

So what happened to me is that I had finally late in my working life landed a great paying truck driving job and was feeling great. But then I began to have tingling in my toes. And about this time I noticed a strange sore on the upper, front part of my tongue. Then we had a backyard barbecue and I bit into a big thick juicy steak but also my tongue. It began to bleed and I could not stop it. I went to the emergency room and they could do nothing, really. It did eventually subside.

(And remember, the symptoms are not always the same.)

I have to leave out some details here because it just takes up too much space, but I need to tell you that over several months I had these bleeding episodes and I must have swallowed gallons of blood in my sleep. Finally my oncologist ordered a transfusion of a blood factor into my system and that seemed to stop it all. However, I got a scare recently when I had a dental implant done. It seems that the deep digging they did in my mouth caused a resurgence of uncontrolled bleeding but this time from my gum. But it stopped within 24 hours and no trouble since. And I have had other dental work done.

Over the course of a year I was in and out of the hospital. Once I got so dehydrated from bleeding that I fainted and I actually thought I was in my death throes. I mean everything went blurry but I could still hear voices. I still had some consciousness.

I wanted to protect my good-paying job so I ended up going back to work too early. I got terribly sick while tramping around in deep snow installing snow chains on a truck. I was put back in the hospital. My immune system had not yet recovered enough.

Lost that job. Now I am back at one that pays much less for more work. But I am happy about it nonetheless. I am living and I have a job (no minor deal in this economy) and I am self-sufficient.

I have an appointment with my oncologist next week. I don’t expect any real news out of that, but if there is I’ll post something.

Several people have emailed me and some have told me how they or a loved one with WM are long-time survivors of WM. I hope I continue to be one.

Not sure what this has to do with it, but my mom is 102. I want to keep up with her.

P.s.

While I certainly do not want to be seen as offering medical advice, I do want to note this: from what I have read there seems to be two general approaches to WM treatment, aggressive and not so much (pardon the modern slang). I read somewhere a doctor advising to try not to disturb the patient’s quality of life any more than is necessary. You see, not a lot is known about this form of cancer. So it is often a guess, albeit hopefully an educated one, as to what steps are appropriate in treatment. Of course you really need to go by what the doctors say, but it would not hurt to read up on things such as the different types of chemo. I had a fairly harsh variety I think, but I understand there are milder forms now. I hope all of this has helped.

P.s. P.s.

Thought of something else. I have gone through three oncologists and left and gone back to one of them. But each one of them did something positive for me. The first one had the worst bedside manner but he saved my life (so thanks). The second got my immune system jump started after consulting with some experts in the SF Bay area. Up to that point the standard things did not work. I took a heavy dosage of Prednisone for about a week. It worked. You are always feeling up and eat like crazy. The third was easy going and gave me confidence. And now I am back to the second one. I live in a relatively rural area, so it is difficult to find doctors knowledgeable about this rare form of cancer here, but my present oncologist is willing to consult the experts — and it did work last time.


Waldenstrom’s seems survivable so far, or I chose to move on with my life…

August 9, 2011

CORRECTION: In my original version of this and then again in my previously updated version I made a goof and said I was diagnosed with Waldenstrom’s in 1987. I meant 2007  (if I had it then, I did not know it yet).

———————–

UPDATE: It had been well over a year since I had last seen an oncologist/hematologist when I visited one yesterday. I had seen her previously and then had jumped to another one when I was afraid she was pushing me gently toward more chemotherapy (although a milder form than my original) when I thought I was not ready for that. But then the other oncologist disappeared due to financial troubles at the cancer center where he worked (Yikes, I didn’t mean he did anything, it was just that the center he worked for apparently had business problems — and the gossip is that the doctors who owned it may have been good at medicine but not so good at business). So I have gone back to my present oncologist and she thinks everything looks stable and there is no need to see me again until six months, unless I detect some drastic change, such as rapid weight loss or heavy night sweats as I had at one time (I still get them, but not so heavy and only occasionally). She reminded me that the nature of Waldenstrom’s is that it is a slow-moving form of cancer — so life goes on as normal (for now). One of the problems of having a rare form of cancer, such as Waldenstrom’s, is that not many doctors have any or at least much experience with it. I am not in a position financial or otherwise in which I would or could travel a far distance to an expert in the field. But my current doctor saw fit in the past to seek advice from the University of San Francisco experts and that helped me (I have referred to that in previous blog posts on this subject, and you can look at those by clicking onto WM at the right side of this blog page). And she seems quite concerned and knowledgable about my cancer in general and is reassuring — that is worth a lot — and she is right here , not miles away. I have seen three oncologists since I was diagnosed in 2007 and each one did something positive for me and I appreciate it. One thing to keep in mind, if you have been just diagnosed with this strange condition, it may not be any more of a death sentence than you already had the day you were born. Most of or a lot of us get something in the end that brings us down, although some people do live to a ripe old age and then just go to sleep. When I first was told I had Waldenstrom’s and that it was incurable and was given some statistics about life expectancy I thought I was a dead man. But life, although interrupted by chemo and then a prolonged period of waiting for my immune system to revive, has gone on pretty much as normal — I’m still working full time at almost 62 now and at the moment feel as healthy as I did at a much younger age (and I have always been quite healthy). I’m just trying to go with it while it lasts. What follows is a re-posting of a post I did a few days ago:

I steadily get hits on posts I have done on Waldenstrom’s Macroglobulinemia — just call it WM. That is the rare form of cancer I have. I have not done a new post on the subject in probably more than a year (guess I could look that up).

But I have been doing fine and have a full-time job. I was diagnosed in the spring of 2007. Things were going so well for me. I had finally managed to latch onto a better paying job and my wife and I purchased a house (well you know, started making payments). The house is gone, and my wife has passed away. But I survived.

I went through six one-week rounds of chemo over a six-month period and tried to go back to work too soon. I was in and out of the hospital because the chemo all but destroyed my immune system — and I’ll stop right here to say that it was the chemo that caused me all, well most, of the problems and pain (but they tell me I had to have it). The only other thing that caused me a problem, and was part of the Waldenstrom’s itself, was uncontrolled bleeding of my tongue. But I got an infusion of a blood factor that solved that problem. I wrote quite a bit about that. In fact you can call up all of my posts on WM by clicking onto the subject WM at the right margin of this page.

The only reason I am doing this post is to let people know who have WM or especially those who have just been diagnosed that apparently this thing, although not curable, is survivable more than you might think. I know the initial info I got was a little ambiguous, to say the least. I was led to believe I had maybe five years if I was lucky, and I did not know when the clock had started ticking, because you usually or are likely to have this thing quite some time before you are ever diagnosed. Well, actually I guess my five years are not up from actual diagnosis, but the last I was told I was in remission, although the doctor did not prefer to use that word. You might say I am in a holding pattern.

I have not seen an oncologist for more than a year, partly because of a mix up or confusion at the cancer center I had last gone to. The oncologist I was seeing parted ways with them over a pay dispute. I also lost confidence in that center.

But I am scheduled to go back to a previous oncologist I had seen and whom I was fairly well satisfied with and I won’t go any farther on that.

I encourage you to check out my other blog posts on the subject by clicking WM at the right, as I mentioned. But I’ll try to quickly as I can summarize what happened to me:

The symptoms are different in different people, I need to mention first. But for me I began to notice a tingling in my feet, kind of like when your foot goes to sleep or when it gets cold. I went to see my family doctor and also a foot specialist. Neither one of them could  detect anything wrong, but when my blood tests came back, my family doctor referred me to a hematologist/oncologist.

Coinciding with all of this, I developed something like a cold sore on the middle of the upper and front part of my tongue. I accidentally bit into it during a family barbecue. My tongue began bleeding uncontrollably. I went to the emergency room, something I had to do frequently for the next several months. They never really did anything for it (until eventually my oncologist did that infusion I mentioned). As I said, I blogged about that and you will find it under my WM category.

A doctor’s office person kind of let it slip when she called me that I may have some form of cancer. I knew I was in trouble and grown man that I am, I went to my room and cried briefly and then composed myself. Thank goodness I still had my wife then (she has since passed away).

The oncologist gave me the diagnosis. I may have not fully comprehended everything he said, but as far as I was concerned I was a dead man walking — maybe I would die any day.

I went through the chemo, which in and of itself was not so bad (okay not so good either), but like I said, it destroyed my immune system and that put me in the hospital several times.

I also had to undergo several bone marrow biopsies. Done with skill they are not so painful, except for one part that should only last less than a minute. But not everyone does them with skill — at least that was my conclusion.

I was off work for about two years.

What kept me out so long was that despite repeated injections with various things (I don’t recall what they called them) my white blood cell count stayed way too low. But finally, thanks to the oncologist I am scheduled to see next Monday and thanks to the advice she got from the University of San Francisco Medical Center, after being put on a brief high-dosage regime of Prednisone, my immune system came back — it gave it a jump start, and I have had no problem in that regard since. But I caution, just as the symptoms are not the same for everyone, neither are the treatments.

While I lost my higher paying job in the process, I went back to another job and am extremely happy to be working. And I feel as good at 62 (almost; I’m 61 now) as I did at maybe 52 or even 42 — 32 or 22, well maybe not so much.

I’ll see what the oncologist has to say next Monday.

P.s.

My wife had encouraged me to read up on WM as much as I could. I did a little, but then lost interest. I just wanted to get on with my life, and for the time I have been able to do just that. But I imagine knowing as much as one can about it if you have it would be better. I’m just trying to enjoy my apparent health right now.

P.s. P.s.

I see I have the categories listed two ways: Waldenstrom’s and WM. Hopefully all my posts on the subject are listed under either one.


How do you go on when your other half departs this world?

July 30, 2010

How do you go on when you lose your life partner? Someone who was not only your wife, but someone whom you actually moved from advanced teenhood into adulthood and into the beginnings of senior status with?

And I don’t think that I am alone in this — that is to say, I feel that as a baby boomer, a child of the 50s and early 60s, and as someone who by some measure is more of an introvert than the opposite, I have lost my link with a world I once knew but that has moved way beyond me.

Yes, I blog. And yes, I talk on a cell phone. And yes, I don’t read newspapers as much as I used to (and I once worked in that field), and yes I surf the web.

But all that aside, I have been feeling increasingly isolated in the world in which I live.

And now I feel guilty about bothering to comment on my loss and isolation. I’m the survivor.

Just as my spouse had her health problems and demons, I have my own — a lingering and ever-threatening cancer, Waldenstrom‘s Macroglobulinemia, a rare form of non-Hodgkin’s lymphoma, which is incurable — and that sense of isolation.

But I am alive and she is not.

(And married people take heed. I have witnessed this before in life. My wife worried a couple of years ago that she was going to lose me. But she died first. My dad worried at one time my mom was passing when she had to have major surgery. He died at 85. Mom is still alive at 99. My mother in-law feared she was about to lose her husband, but he survived her.)

I was on the road when my wife died. I had seen her 24 hours earlier before coming home to find her passed away.

My only consolation is that at our last brief meeting and parting — she brought me a meal in Tupperware and a plastic bottle of milk — things were pleasant and I gave her a parting kiss and thanked her for staying with me all these years and promised to leave the road behind (both of us knowing that such a promise would be hard to fulfill, though theoretically not impossible). My being gone on the road as an over-the-road truck driver was a continuing source of friction.

We were married as mere children — nearly 43 years ago.

After our life experiences neither one of us would have recommended marrying as young as we did.

But I look back with only one regret and that is that I could have not shared more years with her.

Together we started a new generation, and the light of her life was getting to see and take care of the latest addition of the still next generation, who is just more than a year old, and to be with his two older siblings.

And such is the way of the world — a new life begins and an older one ends.

But I did not answer my original question — how does the survivor in marriage go on?

I don’t have the answer, but she was there beside me that first lonely night in spirit and my eyes played tricks on me and I actually saw her.

And I know she will never really leave me.

P.s.

And I have never been able to come to grips with whether there is a Heaven or afterlife, but I want desperately to see her beckoning hand when at last I take my final breath.

Joan (Geeter) Walther, Dec. 11, 1950 to July 28, 2010


Clich’e as it is, positive attitude best weapon against Waldenstrom’s…

February 2, 2010

I think it’s been nearly a year since I have written about Waldendtrom’s Macroglobulinemia (WM), a non-Hodgkins lymphoma (cancer) that I have. It  is incurable but treatable and if you have it you really don’t know what your life expectancy is — but you do have a strong clue that you are not going to live out that long life you thought you might.

If my math is correct, I was 58 when I was first diagnosed — I’m 60 now. Life expectancy for WM patients used to be considered something like five years from diagnosis, but that has changed.

I chose today to write some more about this because for one, as I mentioned, it has been nearly a year since I wrote anything about it, and for another, I have an appointment with my oncologist today. I’m currently in what you might call remission (or at least I have been), although my oncologist kind of waffles on calling it such — he did tell me that for all intents and purposes that is the condition (remission) I was in, however. I have not felt any new symptoms, but then again it is hard to determine. I am getting older, so I have become used to feeling a little more tired and possibly a little less able to do what I did before. Then again, sometimes I feel stronger than I was when I was much younger (lifestyle, what you are doing at any one time, perhaps, makes a big difference).

Not all of those with WM feel the same symptoms. My first was a tingling of the feet. Along about the same time, I suffered from uncontrolled bleeding of the tongue. Actually, a lot of people who are diagnosed with WM feel no symptoms at all; it just pops up in routine blood tests.

One of the main things WM does is make your blood thicker and that makes you more susceptible to things such as strokes. So, as if it were any consolation, doctors will sometimes tell you that WM will not be the cause of your death — trouble is, it will set up the conditions for you to suffer something else that will be.

I’ll try to blog more when I get back from my oncologist. The only useful thing I can say to anyone, especially anyone who has just been diagnosed, is to force yourself to have a positive outlook. I had a survivalist outlook at first and that helped. But after things calmed down a bit, I think I developed a more positive outlook, and that has helped even more.

Our days on this earth were limited the day we were born, so really, in a way, my condition has not changed since birth. I try to make the best of each day. This sounds cliché, I know. But some clichés have truth to them.

I’ll blog more, hopefully later today.

OKAY, BACK FROM THE DOCTOR’S OFFICE:

Pressed for time here, but I can tell you that my blood work showed that I have made improvement since last time. As I said, basically, I am in remission, but some of the indicators from my blood tests show abnormalties, but nonetheless, I have made improvement from several months ago. Wished I could write more, but I have to go to work. I will follow this up soon, though. And that is an important point. This WM threw me off work for about two years. But I have been back to work truck driving (my main occupation for the past some 15 years) since last July. So, there is life, and work, after WM.


So, there IS hope with Waldenstrom’s; Doctor from India is okay by me…

April 9, 2009

Via some e-mails I was assured there is hope for those who have Waldenstrom’s Macroglobulinemia (WM), a form of non-Hodgkin’s lymphoma, a cancer that involves the blood system. I was diagnosed with it in June of 2007 and it sure turned my life upside down, not to mention my wife’s life as well – well there I just mentioned it.

But I was not so sure about the hope. I had gone through six month’s or actually six weeks spread out over six months worth of chemotherapy and although it fought off much of the cancer the treatment did a job on my immune system, making it nearly impossible, not quite, for it to produce white blood cells.

After changing oncologists, I was given a strong dose of a steroid-type medicine called Prednisone and that apparently shook things up enough, because I started producing those life-saving white cells again.

I still had various symptoms, such as a too high IgM (has to do with protein in the blood) number in blood tests but it was going down – but then it went up again. But overall I was doing well and then I began to feel especially ill again and got headaches and night sweats. So my second oncologist, who by self admission had little to no direct experience with WM (but worked with experts out of town on my case via phone and fax or e-mail or whatever they do), with the advice from experts in San Francisco suggested that I needed another round of chemo, albeit a less toxic one.

I was not ready for that, and for some unknown reason I began to feel better. At the same time, I consulted a third oncologist about whether I should go through chemo at this time.

After interviewing me (if that is what they call it in doctor land) two times and looking at blood tests he ordered and I would hope poring over my records, he concluded I did not need chemo at this time. But he said I would likely need it in the future.

In fact, he said things looked good at present.

As anyone who has WM knows, there’s no cure for this thing. The best you can hope for is that you are put on wait and watch and that that period lasts a long time. It used to be the general prognosis for anyone diagnosed with WM was about five years, and that is what I have been living with for nearly two years. But now I have read that it is becoming common for WM sufferers to live ten years and longer from original diagnosis. Predicting life expectancy with WM is difficult. For one thing, even when you are first diagnosed, no one knows for sure how long you have had it. There are also many other factors that come into play, such as age. I am now 59, and that is probably better than if I had been diagnosed say at 69.

Need to add here that WM is rare. Only about 1,500 cases are diagnosed in the U.S. each year.

Not everyone suffers from the same symptoms when they have WM. My original main symptom was tingling in my feet. But my worst symptom turned out to be bleeding from my tongue. I have written about this many times, so you would need to look at my previous posts. Just Google in Tony Walther’s Weblog tongue bleeding or put in the key words Waldenstrom’s Macroglobulinemia, and that is probably one way to get that post, without scrolling down through all of my posts on this site.

Uncontrolled bleeding is a symptom of WM. In my case what finally worked was an infusion of blood factor 8, and I am not 100 per cent positive I have the right factor number, but I think I do, so don’t try this at home, let your oncologist handle it – just a little WM humor, you have to have it if you have WM. And by the way, the purpose of the blood factor infusion was to make my blood clot. WM can create a strange condition in which your blood comes out gooey thick, but will not clot. (And of course for any doctors who stumble upon this, I realize my layman explanations may not be always technically right on, but, hey, I know something about this WM. I have it. And please feel free to correct me via this blog.)

I think the following things, and not necessarily in this order, have contributed to my turnaround:

– Prayers by me, and many others on my behalf (and I confess I have not been a church goer during my life).

– A survivalist attitude I took, especially when I thought I was facing another imminent round of chemo.

– Exercise. My present oncologist strongly suggested it. I took his advice, and I feel so much better. We had the good fortune of recently moving to a place that is on a hill overlooking a river and has a trail up and down the slope. I have been walking that trail at least once a day, and sometimes twice.

– Being forced to somewhat downsize our lifestyle by necessity of lack of income, but feeling so much unexpected but welcome relief in the process.

– And this maybe should be first, a supporting wife and a supporting family.

– Also, as my India type Indian oncologist suggested to me: “you can stand on one leg and meditate or you can be part of the world”.

That last comment about my from-India oncologist brings up the subject of at least two of my past blogs. I had written about the fact that the only oncologists available to me are Indian. I had had some difficulties relating or communicating with my first one, and even to a degree my second one. But this new one I seem to relate to better. That may be partly because I feel better, and largely due to the treatment from the first two. It is also because he was willing to completely review my case and share his review with me, the patient, and the others were not.

But I am here to say that no matter what your medical problem, if it seems at all serious, you should always get a second opinion, and in my case, I am on opinion number 3 and glad of it.


Keeping an open mind about Indian doctors

March 12, 2009

In a followup to my how do I find a non-India Indian type doctor post, I can report that I met with my new Indian (India) oncologist today and I can understand him and he seems interested in helping me and indicates he will give my problems a thorough study. He talked with me, and my wife, for a long time.

While my frustration has been real after dealing with two previous doctors from that mystical place half way round the world, I appreciate whatever they may have done to help me. And I am willing to give it a try one more time.

Apparently there is more motivation and brain power available on the Indian subcontinent than in the United States right now when it comes to medicine – no offense to our existing homegrown medical professionals intended.

I went most of my life without having to deal with doctors – only a few exceptions. What I have come to believe after being diagnosed in June of 2007 with a form of cancer known as Waldenstrom’s Macroglobulinemia or WM (a non-Hodgkins lymphoma) is that it is up to you as a patient to make sure your doctors (primary and specialists) are willing and able to communicate with you. Far better to take a chance and get second, third and so on opinions than be railroaded into treatments you do not fully understand the consequences of.  And I quickly add that I am not saying exactly that such has been the case with me. I’m just saying be picky about doctors. It’s your life.

I’ve also come to the conclusion that the number of opinions you get will likely correspond to the number of doctors you talk to.

While I stand by what I said in a previous post (s) about Indian doctors, I am obviously seeing yet another one and am keeping an open mind.

P.s.

For my WM fans, I plan to do a post soon to update you on my condition. But if you scroll down on this blogsite to the long post entitled: “The great Indian doctor quandary” you will get a fairly good and up-to-date-rundown. Or just click onto WM at the right side of this page under categories.

(copyright 2009)


How do I find a non-Indian (India) doctor???

March 10, 2009

My previous blog was rather long.

What I simply should have asked, a question primarily posed to but not limited to my fellow sufferers of Waldenstrom’s Macroglobulinemia (WM), was this:

How do I get a non-Indian (India type) doctor? How do I get a doctor whose speaking I can understand (I have a reasonable vocabulary and four years of college)?

Or should I care?


The great India doctor quandary…

March 9, 2009

If you are a stickler for political correctness or if you are a white person and you are ashamed of your race, then perhaps you should not read on because this might make you at least a little squeamish or uncomfortable or it may really upset you.

I’m a white guy with Waldenstrom’s Macroglobulinemia (WM). This is a rare form of cancer that afflicts probably no more than 1,500 people a year in the U.S. (Remember our nation’s population is about 306 million). While so many forms of cancer are referred to as “curable” these days, there is no cure for WM. It is treatable. And the best thing you can hope for is that you beat the statistical odds and live longer, way longer, than the average of five years from the time of diagnosis (and I have received e-mails and/or comments on my blog from WM survivors who have). I’m going on two years right now.

But let’s get to the juicy part I hinted at on the top of my blog.

Quite by chance I was initially referred to an Indian (India Indian) oncologist. At first I was awed, even if I did not always understand each word, not only because I lacked medical training, but because of his thick accent and weird phrasing. Subsequently I caught him turning common American idioms on end, resulting in directions that could be interpreted in more than one way. Even so, I was still impressed at his knowledge and his dedication to his profession. He works seven days per week if you include his morning hospital visits (I was in the hospital many times and he never missed a Sunday morning visit). I overheard his conversations with other patients. He loves his golf too. He drives around in a sports car that has a personalized license plate that has his name and then the number 2, implying that he has another one just like it, I guess for his wife.

At one point I was in danger of bleeding to death and he ordered an infusion of blood factor 8 and it did the trick. But that was well into my treatment and I was bleeding uncontrollably when I first visited him. I had a blood-soaked washcloth in my mouth. His attitude at the time seemed to be that, well that was a separate problem, that I would have to see a separate doctor for that. And actually I did, but he eventually was at a loss for what to do so he wisely consulted back with my Indian oncologist, who ordered the factor 8.

And let me stop right here to address a side issue. If you are a patient and you are concerned that you might be in imminent danger of dying a premature death your only choice is to get aggressive and get someone, such as your spouse, to help you. It is hard. You have little power. You also have to become somewhat knowledgeable yourself. You will meet resistance. You either persevere or you die.

When I say aggressive, do not mistake that for belligerent. I know it’s difficult to know where to draw the line. I once was threatened with being hauled off to the local police station while I was waiting for treatment in an emergency room. My beef at the time is that previous experience had shown me that regardless if I ever saw a real doctor I would be charged for seeing one. I was not being cooperative with a male doctor’s assistant who did not identify himself as a doctor, but nonetheless implied that he was, until I asked him point blank if he was and he answered no. I was a little clumsy or ham handed in my approach. My only defense was that I was suffering from terrible mouth sores, felt terrible, knew I had WM, had just gone back to work but had to leave my job again (looking toward a future of no gainful employment and mounting medical bills), and my attitude was if I am going to be charged for seeing a doctor then let me see a doctor. I finally did see a doctor. He was quite nice and sympathetic and totally incompetent, at least as far as my problem was concerned. He should have consulted with my oncologist (but I think this was over that awkward time between Christmas and New Year’s – he still should have done so).

So, what’s my beef with the Indian doctor(s)? Well, as I said, for one thing they are hard to understand. For another thing, they can be quite haughty. This particular one had the Seinfeld Soup Nazi approach. He welcomed questions and then when he got them bristled and blurted out “I’ve already answered that question!”. He also contradicted himself. He once told me to see another doctor about my iron deficiency and do whatever he or she told me to do. I did. When I informed him that I was going to take iron pills he yelled at me: “I told you, no iron pills right now!”

(And just to show I don’t stack the deck against anyone, I will give him credit for being extremely indulgent with my well meaning older daughter who peppered him with questions. I was in the hospital at the time. At one point she actually asked him a question, prefacing her inquiry with the fact she had been told something by one of her friends who was a nurse. I turned my head and I am not exaggerating when I say I nearly climbed the wall in fear of the outburst that was to come. He surprised me and answered her question in a calm and patient manner.)

But coincidentally just before the one time I can pinpoint that he saved my life with that factor 8, he nearly contributed to my untimely death. I was in the hospital to get a blood draw and afterwards my tongue started bleeding. I sat in a chair holding it with my thumb and forefinger for more than an hour (the only known method apparently to stop the bleeding). It finally subsided. He came into the room and announced with a broad smile on his face that: “I will see what I can do to get the bleeding to stop. But if I am not able to, there is nothing more that I can do (shaking his head and grinning of all things).

Everything went blurry, but I was still conscious at some level. I had the sensation that my whole body was sinking into oblivion. I heard myself confessing to being ashamed that I was scared and acting cowardly, but that I could not help it. I did not want to die.

As is apparent, I did not die after all. I was rushed to emergency and given fluids via IV. I was suffering from extreme dehydration, primarily from loss of blood. I had awoke many a night with a mouth and throat full of thick, globby blood (a symptom of WM). I ruined many a pillow case and wash cloth.

When I really became disenchanted with my Indian doctor, though, was after my standard chemo. There was indication that the chemo had been a success. My IgM (WM talk, I don’t want to translate at this time) blood counts were way down, and I was told my latest bone marrow biopsy showed no signs of cancer cells. There was some indication, though, that the chemo had scarred my bone marrow (a common side effect) and that this might be contributing to my inability to bring up my white blood cell count (something needed to restore my immune system).

And this is where my relation with my Indian doctor really went sour. He seemed to completely lose interest in my case and simply shook his head, indicating the only thing I could do was live in eternal limbo.

He also grew even more impatient with questions, most of which he declared like an opposing attorney or a judge: “asked and answered!” and refused to go into the matter again.

At some point my wife and I had to get ourselves a new primary care doctor because our previous one had gone bankrupt, partly due to his ex-wife and bookkeeper embezzling from his practice and partly due to the fact he had gone off the deep end himself. The last time I saw him I thought he was the patient. He was unresponsive, unkempt, and had an empty stare.

I told the new doctor of my desire to get another oncologist. The new doctor was (still is) a woman. She referred me to a woman oncologist. I was not dismayed that this new oncologist was also Indian. Not at first anyway.

On my initial visits she was a breath of fresh air. She had a thick accent but was fairly understandable and she was willing to answer any question, even if already asked.

I began to lose a little confidence when she admitted she was but a beginner. But she seemed so willing to work with me and so nice. And to her credit she did work with the University of California at San Francisco Medical Center and prescribed a regimen of steroid pills to boost my immune system. She warned me that there was no guarantee it would work. The good news is that it did work.

But although my immune system has settled down into a low but acceptable range, some of my other WM indicators have begun to go the other way. At my second to last visit she said I could hold off seeing her for another three months, but that she definitely saw another round of chemo in my near future. She said the experts she consulted with had suggested a less toxic form of chemo that would include an oral administration of the drug Thalidomide (if you are at least a baby boomer, you may recall that is the one that pregnant women took back in the 50s and 60s I think and resulted in deformed babies). Old drugs never die, they’re just brought back for other uses. As I understand it, this would be followed up by IV infusions of Rituximab (something or a variant of something I am sure I have had previously and that was indeed quite toxic).

So a couple of weeks ago, having not seen her in three months, and starting to show some symptoms such as increased fatigue, headaches, and night sweats, I anticipated a long talk. No she was quite perfunctory and simply said I told you that you would have to go on chemo. I was understanding of that, but I wanted more information and a better understanding of this new chemo. Chemo is a mixed blessing. It can cure you or prolong your life, but it also does great damage to your body and may well contribute to your death. She was not in the mood to talk. She had to me moved from the sympathetic and loquacious female doctor to a clone of my Soup Nazi original Indian doctor.

Well, my wife and I showed her. We picked up my records and went to a much-heralded cancer center in town. They have several doctors in the practice, two of them are Indian. That was a cause of reservation (Indian, reservation, no pun intended) for me. I was told that they would review my documents and assign me to the appropriate doctor.

That was on Friday. Got a call already this week and yes I have been assigned to the “appropriate” doctor. You guessed it, one of the Indians.

So what is the proper protocol here? No I’m not like the idiotic redneck white bigot who would consider refusing a life-saving blood transfusion from a black man.

I’m just a white man who wants a learned and sympathetic ear and someone who speaks my language and understands my cultural attitude (such as no inappropriate glee or grinning).

My appointment is still on. I just have mixed feelings.

(Copyright 2009)


Looking forward: we can do better in 2009…

January 1, 2009

(Copyright 2009)

Tried to post the following blog last night, but I was just too tired to do it, but I think I’ll go ahead and post it now – I hate to see my own efforts go to waste.

The blog not posted (until now):

Even though the dateline on this blog already reads Jan. 1, 2009, I’m writing it minutes before midnight on the last day of 2008 and am doing so because I realized that I had not written anything to do with the year in review or new year’s resolutions and such.

I’ve never been big on new year resolutions. Can’t recall the ones I’ve made in the past and doubt I held to them anyway.

As far as reviewing the old year, you’ve already been there, done that. But that won’t stop me.

This has probably been one of the most tumultuous year’s as far as current events, and even personal events, go in my entire life.

There was 1963 and the President John F. Kennedy assassination, but as momentous as it was, that was an event, not an entire year. And there was 1968 when I entered the U.S. Army and when we discovered as a nation that we were not going to win in Vietnam (I went to Europe to fill a spot in the Cold War – we did win that eventually, kind of). Robert Kennedy was assassinated while running for the presidency and Martin Luther King Jr. also fell victim to an assassin.  So maybe ‘68 rivals 2008 in my mind.

For me, 2008 essentially began in a hospital bed. I don’t think I was in the hospital right on New Year’s eve, but I was soon afterwards. The only thing that kept me sane was a television set and following the primary election campaign (and of course visits from my wife and family and friends). I’ve always been a political junkie, preferring to watch the political games to the watching of sports games. On the Democratic side I think Hillary Clinton was still thought to be the queen awaiting to be seated on the throne. But there was this interloper, Barack Obama. And wasn’t the smart money on Rudy Giuliani or maybe Mitt Romney on the Republican side? I had actually predicted in a family discussion, at Thanksgiving 2007 as I recall, that Romney would be the Republican candidate and would likely win. I had said this not because I liked him, but because I just thought he was smooth and smarmy — albeit with a little business-like edginess — enough and large numbers of voters had seemed to be going his way in politics in past elections. John McCain was a longshot. He was portrayed as too maverick for his own crowd and he was too old (he did his best to un-maverick himself, save that daffy VP selection, but couldn’t stop the aging).

My own prospects were not looking good – and I stop in mid sentence to note that the new year arrived about two minutes ago here on the West Coast of the USA and I didn’t even notice. Happy New Year!

Anyway, I had a failed attempt to go back to work in December of 2007. I lasted about 18 days. And then I was in and out of the hospital during the first part of 2008 with the effects of the cancer I suffer from, Waldenstrom’s Macroglobulinemia (WM). Through much of the year I had a hard time getting my white blood cell count up high enough. By Fall, though, I had seemed to have gotten it up high enough and stabilized, but my blood is still thicker than it should be and that problem has not fully stabilized (I plan to write more about WM this year – a resolution I hope I can keep).

I do feel much better than I have in the past, though.

But back to the nation. So we had this presidential campaign. And something, as cliche as it sounds saying it this way, I thought would never happen in my lifetime happened. A black man was elected president of the United States (what next? A woman, a black woman?).

And something that I have been assured all my life would never happen again in the United States has happened, a near total collapse of our economic system. In some respects it seems worse or potentially worse than the Great Depression. We will see about that.

It’s a global economy nowadays, so the collapse is global. Well, I guess it was last time too.

I have my own economic catastrophe, but as has been the case most of my life, I can’t tie it directly to the economy in general, it’s because I have treatable, but incurable cancer.

I feel strong enough to deal with my own problems. I can only hope that our nation is strong enough to deal with its problems.

We have promising new leadership. That gives me hope.

While I don’t like the fact that an Iraqi journalist threw his shoes at our current lame duck president George W. Bush, I can’t help but think that it was a fitting metaphor toward our nation’s (Bush’s) failed policies.

Even though Herbert Hoover has been reviled most of my life, there is some revisionism that says he was not so bad. And I have often read that Harry Truman was not liked when he was president, yet Democrats and Republicans often cite his name in a positive way.

And I read the other day that a Bush insider said that his presidency fell apart on his handling or I should say mishandling of the Katrina disaster in 2005. He lost all credibility after that. It seems strange to me that he could not have seen the political value of coming to the aid of his fellow citizens in a more robust way, even if he didn’t really care. I have to contrast his performance on Katrina with the quick and decisive action of the Chinese government (not an endorsement of their system) to this year’s earthquake (even if it may have been the government’s fault that so many buildings were not earthquake safe).

At least Bush did better on Katrina than the Burmese (Myanmarese if you will) government did for its people in this past year’s devastating cyclone. Incredible that a government would hold back on outside help in order to retain its power (oh, that’s right, we refused medical help from Cuba during Katrina).

At this juncture I have a hard time seeing how George W’s legacy can be saved, but history works in mysterious ways.

And we ended 2008 with a blowup in the Middle East between Israel and the Palestinians. Modern Israel was born the same year I was and it still can’t get along with the folks it displaced (and that’s a long and complicated story and hard to sort out, and I don’t mean to take sides). The more things change, the more they stay the same.

I can do better in my life and I think our nation can do a lot better, starting this new year.

HAPPY 2009!