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

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?

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…

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…

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

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 with 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.

(copyright 2009)

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

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…

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…

(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!

Thanksgiving for cancer support and prayers…

(Copyright 2008)

The WALTHER REPORT

By Tony Walther

The one thing we all face together in this thing called life is that none of us are going to get out of it alive.

Once one faces that fact, maybe it is a lot easier to face the future. I’m 59 and was diagnosed with a treatable but incurable type of cancer almost a year and a half ago.

For me, if often seems the future is already here or maybe it has come and gone. I mean I always spent so much time either thinking things would be better in the future or putting things off till the future.

When I was first diagnosed with Waldenstrom’s Macroglobulinemia (WM), I was told that the average life expentency after diagnosis was five years. But the problem is when did the clock start running? No one knows when he or she first got it. I litterally thought I was a goner when I was first diagnosed. Then I read some blogs and some info on the net that indicated that my life expectency could be somewhat longer or in fact that it was really unknown how long I might live. One doctor suggested I might even live to be a relatively old man (I doubt it, though).

Cancer never shows up at a good time, but for me it seemed particularly inconvenient. I was not long into the best job, at least pay wise, that I had ever had. I have four years of college, but pulling double freight trailers up and down the highway was paying me more than I had ever seen. In fact, I was always happy to note that my wages were as high or higher than a lot of those listed for beginning professional jobs in my area of the country. Of course beginners in the professions can make a lot more eventually, although they have to better themselves and move on to do it. Or as my former oncologist not so delicately put it, those doctors down at the urgent care clinic do not know what they are doing, if they did, they wouldn’t be working there (hopefully I don’t have to go to an urgent care center and hopefully if I do the doctor didn’t read this and besides I was just paraphrasing my egotistical former oncologist, who as far as I know did at least save my life at one point).

And I get off track so easily…. anyway, I got cancer and that put a monkey wrench into the works, to say the least. If you have WM you know or will soon find out that it is a watch and wait thing either before they decide to do treatment or after. It is incurable, so you always have that feeling of doom hanging over your head. But, remember, we all had that anyway.

I would advise joining a cancer support group – and I know if you are like me, you think, support group, no not for me. I don’t want to sit around listening to people moan about their misery. It’s bad enough I have this thing, without listening to the woes of others.

But my wife talked me into going recently, and the best thing for the both of us, is that we both go. She has gotten as much out of it as me. She’s the care giver. A lot of the spouses or care givers are in our group. One member does not have another person and others can’t get their significant others to attend. In some cases the non-attending others are the actual cancer sufferers and in some cases the spouse or care giver.

And it’s not just moaning and groaning — there can be some of that, but there is also happiness and joy, and education, and most of all, just normal every-day people sharing their lives and thankful they have others to share with.

What I really wanted to say in this blog was that I am thankful to be alive and thankful that I have a family and thankful that I can spend another Thanksgiving with them.

Through my family and friends a lot of people have said prayers for me, most of whom I do not even know. I thank them and the one to whom they are addressing their prayers.

The cancer has been a heavy burden, but at least it has allowed me to appreciate the good things the Lord has bestowed upon me and us all.

This truly is a time of thanksgiving.

Happy Thanksgiving to all!

Have WM? Don’t worry, be happy….

(Copyright 2008)

The WALTHER REPORT

By Tony Walther

This was going to be a blog about the latest developments in my Waldenstrom’s macroglobulinemia (WM), a form of cancer, and maybe I will say some things about it, but really I’m just blogging now to put off other things I really should be doing.

(For a summer of fires update, please see the P.S. at the bottom of this blog.)

But, okay, I will say something about my WM. Went to my oncologist yesterday and found out that despite what I had been told many weeks ago by a specialist in San Francisco, I am not in remission. Actually, I don’t think he said unequivocally that I was in remission, but he suggested as much. But I already knew before yesterday that such was not the case. My oncologist here at home told me my cancer was still doing its thing several weeks ago, and again yesterday.

The good news was that things seem to be fairly stable at the moment, although my protein level in the blood is starting to climb again, if ever so slightly. The bad news is that I cannot go back to work and it is not looking as though I ever will. I also may be looking at another round of chemotherapy in the near future.

Not being able to return to work would not be so bad if I had a lot of money, but you know, I don’t. I was really holding out hope that I could go back to work and maybe build up a little nest egg. I am 59 now. So anyone reading this, especially if you are younger, please, for your own sake and for the sake of your family, if you have one, prepare for the future, for that future can come now.

It’s been about a year and two months since I was diagnosed with WM, a non-curable form of non-Hodgkin’s lymphoma. It’s slow moving, indolent they like to say, but the problem is by the time one is diagnosed, one never really knows how long one has had it (I use “one” to avoid that awkward he or she thing and now I have to explain it and I might as well have said he or she or just he because that is often gender neutral anyway).

You hear things like, your life expectancy once you’ve been diagnosed is five years, maybe even ten years, could be more, could be less than all that, because for one reason even the doctors don’t know how long you’ve had it.

So, anyway, the oncologist tells my wife as we are leaving (I’m sitting a ways away in the waiting room) to enjoy the time we have left and don’t worry. While that is easier said than done, I wholeheartedly agree with that advice (what would be the point in doing anything else?).

I intend to write a more detailed blog about my WM soon (as in today or tomorrow). This I would think would be of general interest but also of special interest to anyone who has WM or anyone whose family member has it. It is a rare form of cancer, so unfortunately there has not been a lot of research on it, at least not compared to the more prevalent forms of cancer.

This is my second summer with WM. I went through six, one-week, sessions of chemotherapy and many hospital stays, mostly due to a weak immune system, and worst of all early on I had a bout with uncontrollable bleeding of the tongue, finally put down with an infusion of factor 8 in my blood. When my immune system was at its worst, I had terrible mouth sores.

So now, I do not have any sores and little to no pain or discomfort – oh, except for the neuropathy or nerve damage in my feet, which was actually my first symptom. So if you ever get that, make sure you get a blood test, you might have WM and the sooner you jump on it, the better chance you have of prolonging your life. I have read that many times when one is diagnosed with WM nothing is done because it is in its early stages. I guess that can be unsettling too, to know you have a deadly disease, but nothing can be done about it at the time.

I should add that I suffer from some anxiety and fatigue at times, which my oncologist tells me is expected with my disease.

I always know my blogs have gone on long enough when I get to the second page, so I’ll try to wrap things up.

As I said, I plan to write more about my WM with some more details or tidbits that might be of interest, especially to those with it or affected by it.

And I should always add this piece of advice, always get a second opinion and make sure you are comfortable with your oncologist from the get go.

For now, don’t worry, be happy.

P.S. This certainly has been the summer of fire here in Northern California. It all started about the first day of summer and went on for more than a month. Much of the time here in my town at the northern end of the Sacramento Valley we were nearly surrounded by fire, most of it burning in mountain forests and in brush lands. At times it looked like it would spread into the city limits, and I guess it did a little. But now that the fires are spent, for the most part, we had a close call yesterday. A fire broke out in some brush lands within the city limits and jumped a main road and spread to more brush lands and caused the evacuation of hundreds from homes and businesses and widespread power outages. We did not have to evacuate and suffered no power outage except for a split second during Hillary’s speech. The cause of the fires in the wild lands earlier was predominantly so-called dry lightening strikes. The cause of yesterday’s fire (and come to think of it there was another similar fire this morning) in under investigation, but I suspect it has something to do with transients who live in our urban wild lands… don’t know really.