Bad news

This blog contains disturbing and alarming information, continue at your own risk.

It has been a long time since my last entry, but, “if you can’t write something nice, don’t write anything”. My Oct scan showed a small (4 mm) lesion on my lung..... worrisome, but not definite. Not wanting to cause unnecessary concern, I decided to wait for my next scan at the end of March.

Then came a small but persistent pain in my back. I generally do not worry about small pains, I am old after all, and assumed that it would go away with time. Not so this time...... the pain continued, and became annoying, enough to require an occasional pain pill.

Ok, I connected the dots moved my scan up to the end of Feb. I wanted to know before my annual pilgrimage to Pa. So..... many new and larger lesions on my lungs and liver. No question, the cancer had returned with a vengeance.  My condition is not operable, and not consistent with recovery. Without chemo treatment, my life expectancy is less than a year, with chemo, more than a year.

After I return from Pa. They will take a sample, and do “gnome” testing to help determine what kind of chemo is best. The goal is to shrink tumors and prolong life while maintaining a reasonable quality of life.

Of course, quality of life vs. quantity of life questions will need to be answered. It appears that it will be a fine line.

I never planned to live forever, but this is still a shock..... I plan to update this blog as soon as my thoughts settle down.

will you still need me when I am 64??

Ok.... so it is my birthday... I wasn’t sure that I would make it, but 64 fun filled years are now in the book.... It is certainly time for an update, but not much to report. Dialysis is relentless. While I had big ideas on how to use the “hours spent in the chair”, I am beginning to see why people don’t manage anything useful.

I have just started using my youthful fistula, but am having some technical issues. My fistula is under developed at this point, and hard to hit with the large needles that are used.... ok, not hard to hit, but apparently, hard to avoid going all of the way through the vein. When the needles do get properly placed, any movement of the arm causes the machine to stop pumping, and sound an alarm that penetrates deep into your brain. If prisoners were forced to listen to these alarms, it would be considered “cruel and unusual” punishment. Keep in mind, it is not just my machine, but 30 machines, each with several flavors of alarm depending on the nature of the current crisis.

I mentioned the “large” needles..... my needles, that are larger than anything that anyone has ever seen, are considered small compared to the needles that are in my future. It has to do with the amount of blood that can be drawn through the needle without damaging the blood, which causes the blood to clot, and shut down the entire operation. I am currently at 250 ml. / min. and need to get up to 400 ml. / min. Of course, at the lower flow, my blood is not getting as clean as it needs to be. I am hoping that I will begin to feel better as soon as the technical issues are resolved.

I know that all of this sounds like complaining, but it is not!!! It is just that this is a medical condition blog..... mostly. Even though dialysis is complex with lots of annoying side effects, it is a remarkable life extending process, and I am very fortunate to have it available to me.

Ok, mostly medical.... with an occasional slip into the philosophy of life and death. I have noticed twice, once 5 years ago when first diagnosed with a poor prognoses, and again recently when faced with a grim outcome, that I feel very peaceful when I think that I am dying, and get stressed out when confronted with continued life. I think that it is because there are not a lot of items in my bucket list. I have participated in all that life offered to me..... the good and the bad, the right and the wrong..... I didn’t leave many stones unturned. Sure there are things that I wish I had not done, but sometimes, I sure learned what not to do. I guess my point is, I was quick to jump at opportunity. Of course I made some horrible mistakes, but also had experiences that are unforgettable, and are nearly unavailable to most people.

In the end, I think, It is not the 100's of exciting things that I didn’t get to do that cause regret, it is the opportunities that were passed up. Fortunately, for me, that, is a short list.

Scan Results

I don’t have much time this morning, but the radiologist did not see any sign of cancer. There may be some other issues..... I will find out more later. Thanks to all for the good wishes and support.

Scan

Scan was completed, but no real news. The doc says that it looks ok, but am still waiting for the radiologist report...... next week sometime.

One week until scan

Here we are, nearly a month has gone by..... I am still not inspired, but am feeling somewhat better.

Recently, I had the pleasure of a visit with my mom and brother Bill. My brother generously brought my mom to Ca. for a visit. I didn't have the stamina to do much touristing, but it was a great time with family.

I am still doing dialysis 3 times a week.... guess that I don’t need to mention dialysis, as it is kind of a forever thing.

Tuesday, I had minor surgery to improve my fistula. It has been 3 months, and it has not “matured” to the point of being useful.

My cancer scan has been rescheduled for Fri the 26th, and the anxiety is creeping into the corners of my brain. I have been there and done that before, but still cannot shed the underlying feeling of doom and gloom. It has been difficult to make decisions lately, I always want to wait until my next scan..... Karen pointed out that “there will always be the next scan”. A good point for sure..... but, I don’t see how to ignore a possible life changing event looming on the horizon.
I still have no energy, but am getting annoyed with myself for being so nonproductive. I am not sure if I am suffering the after effects of my surgery, or the ongoing effects of dialysis. History suggests that this is all part of the process... in a couple of months I will wake up feeling energetic, and ready to take on the world. Of course, that was in a pre dialysis world.

I am worried that “low energy” is a chronic dialysis condition. In 30 years of self employment, I have always been productive when I feel good. When I found my self being non productive, I would fix what ever was making me feel bad, and then get back to my energetic self. In all honesty, this scenario wasn't always a well conceived plan, carried out with loads of discipline, just something that I could notice while looking back. I have always suffered from lack of self discipline, but have been always been good at setting up situations where I want to work, and enjoy my project.

Honestly, I don’t think that this post is my best piece of writing, but it is the best that I can do right now. Hopefully, this is not a chronic condition.

Dialysis continues

This is my first effort to do something during dialysis. I don’t really feel inspired, but feel that I should make an effort.

Like most things medical, dialysis comes with many un advertised side effects. Let me say up front, that is not meant to be a list of complaints .....

The next day:

Well that is all the further I got. Yesterday, every movement caused my dialysis machine to alarm and stop the process.... Too much or too little pressure/flow in the lines....  Apparently this is common when using the port, and will not be a problem when my fistula is ready to use. For now though, must remain as still as possible during dialysis, and.... it is only 3 hours and 15 min,..... LOL

I am still not inspired, but will try to bring everyone up to date. I am now into my 2nd month of dialysis. It is not terrible, but it is a grind. I am very tired during and for about 3-4 hours after dialysis, and then there are the side effects..... itchy skin, watery eyes, and restless leg syndrome, and low blood pressure causing me to fall down occasionally. On the good side though, diabetes seems to be a non issue now.... go figure.

So, dialysis sucks.... but it is so very much better than death.  LOL Once again, not complaining, and am happy to be alive.

I saw my oncologist last week, and got some numbers regarding my cancer.....I am still at stage 4 at this point, 40% I am cured, 60% the cancer returns. This is mostly based on the cancer in my lymph nodes being alive, and not killed by the 4 months of chemo. Generally, if cancer returns, it will show up in the liver, lungs, or bones. My scan scheduled for Nov. has been moved up to Sept. 23. The idea is to catch any cancer in time for effective treatment. If the cancer returns, the prognosis is very grim. It is just a question of how long one can survive, and the quality of life during treatment.

OK, that was a depressing paragraph, but it is what it is, and, my situation is not tragic. I don’t want to die soon, but really don’t fear death. What I do fear, is being sick for a long time.

Oh well, no use pondering the future, it will be here soon enough. For now, things are going ok.

Dialysis 101

Sorry for the delay in posts. I generally like to wait until I feel good to write a post, and I really have not felt good recently. I don’t seem to have energy to do anything, and have to force myself to do the necessary things.

Anyway, this is the part of the process that becomes a grind, nothing new to see here, move along, the excitement is over. Recovery from this operation.... 1-6 months. Time required to get used to dialysis..... unknown.

I am not sure if it is just the general recovery from the anaesthesia and the operation, or just how you feel on a diet of dialysis 3 times a week. I was hoping to use the dialysis time to do something useful, but that does not look like it is going to happen. After a month of dialysis, I can only remember one person reading a book..... The rest, including me, are mostly lying back with their eyes closed, or watching TV. The process seems to make me very tired. I feel my best the day after dialysis, and not too bad the morning of dialysis.

The dialysis center itself is a curious place. The literature shows lots of healthy looking people with smiles on their faces, but the reality is very different. Lots of old sick people..... none of them smiling.... I may be the youngest and healthiest person there. (Yikes, that is hard to believe.) It has the same ambience as the chemo clinic at the cancer hospital. No doubt, everyone there is happy that the technology exists to keep us alive, but, there is no apparent joy in the process.

Anyway, my plan for situations like this has always been the same..... Keep on walking, put one foot in front of the other and keep plodding along. Several of my doctors (yes there are many) want to diagnose me with depression, and have offered drugs and/or therapy to get over the hump. I think that I will wait a bit longer before I head down that slippery slope.

Thanks for all of the comments and support.

Cancer stage

So here is the problem..... belly cut open from the sternum to the nether regions..... my insides scrambled to get to the kidneys.....  need pain meds to dull the pain.... pain meds remove any energy that might be trying to break through. So, I am trying to type a few lines before my morning medications.

No sense dancing around the big news..... my cancer is stage 4. That means that it has escaped the kidneys, and has gone looking for new places to settle. They could see that the cancer was outside of the kidneys, and cancer was found in 2 of the 25 lymph nodes that were removed.

My surgeon tells me that it is not a “really bad” stage 4.... no evidence of distance metastasis. He also says that the recent chemo may have “cured” me. I am hoping that he is right.

For now, heal up, get good at dialysis, and get a cancer scan every 3 months for the next year.

I know that “every bodies cancer is different”,” I am not a statistic”, “could live another 20 years”, etc...... I recognize that statistics are general in nature, and there are always exceptions. I am also a realist, and would rather be stage 1 than stage 4.... after all, there is no stage 5.

I want to remind everyone that this is not a tragedy. As a family, the Crains have been very lucky health wise..... no premature deaths, no wheel chairs, no one institutionalized,.... Statistically speaking, one of us was going to get some awful illness. I know that others in the family have done their part, but now that I have stepped up and filled that spot, for now at least, the rest of the family can breath a bit easier. Y’all can thank me later..... LOL

My pain meds are starting to kick in, and I can feel my IQ sliding down 30 - 40 points, so I need to wrap this up for today.

Thanks for all of the encouragement and support.

Survived again

It is Tues morning, still in the hospital..... not really due to medical problems, but a paper snafu. They cannot let me go until dialysis is organized, and that cannot be done until my “hepatitis” panel is completed. It takes 3 days, and was submitted on Thur, and should have been available by Monday. They can track it to the lab, but then “no trace”. So, another sample (drawn at 3:30 AM) submitted Monday, ready Wed.

I received dialysis on Thur, Fri, Sat, and Monday. I will have dialysis again on Wed, then likely get out of here.

I am healing well, but still feel wiped out...... normal for major operation, and normal for dialysis. They say that I will get used to dialysis, and not feel so tired..... can’t wait!!

I have collected lots of fodder for blogs, but am just too tired. Thanks to all of the folks that checked in on me, and made my hospital stay a bit brighter.

More soon.....

D day approaches

So, I had my fistula and dialysis port installed on Tues morning..... first on the list, no waiting. Got there at 5:15, and left at 3:30. First fistula attempt, at my left wrist, failed for reasons that I don’t quite understand.... bad veins or something. I was not quite awake when the doc told me. I am, however, the proud owner of a baby fistula at my upper arm, at the inside of the elbow. It should take 2-4 month to mature to useful size. Until then, dialysis will be accomplished using the catheter/port near my right collar bone that goes through my jugular vein within an inch of my heart. It is almost the same as my picc line, but able to flow a higher volume of blood. Altogether not too bad, just no showers until the port is removed. Oh yeah, no lifting more that 20 lbs, with the left arm ..... ever.....

So, it is Mon. morning, and D day is Wed. at 10:30..... Time is getting short, and I am trying to eat all of my favorite foods at all of my favorite restaurants, and catching up on the honey-do list here at Karens. I have nearly completed “getting my affairs in order”..... living trust, vehicles titled as TOD (Transfer On Death), bank accounts the same, etc..... I have placed all of the important information regarding keys, passwords, bank accounts, credit cards, and so on, into an “open in case of death” letter.

They say people don’t want to do these things because they feel that death will come as soon as they are ready. I know that it sounds morbid, but I did not find it to be so. Once I started, I felt that if I didn’t complete the process, I would surely die in the up coming surgery. I now feel a great sense of accomplishment, not just for the volume and variety of food that I have eaten, but for the entire process.

These past few days I have also been thinking about “luck”..... Now, we all would would concede that getting cancer can not be considered lucky by any metric, but outside of that, I am a very lucky guy. Many people that get sick do not have the friends, family, and resources that are abundant in my life. I am blessed with a great family, both in the East, and my adopted family out here in the west. Karen and her son Mike have made it their business to see that I get good care, (and food). Many people lost houses in the last crash, but I was able to gain two houses. I should add, that the rent from these houses has kept me out of the poor house, and allowed me to keep my head above water. I should pause to thank my friend Carl, who has always supported and helped me through my real estate adventures.

I have lived a life full of excitement, success, and, adventure, and, LOL, misadventure...... I guess that I could say that there are not many things left on my “bucket list”. I am indeed one of the lucky ones. There is no way that I have deserved all of the joy, good people, and good things that have come my way.

Now, don’t take this as a “good by” letter, it is not meant to be..... I know, ending a sentence with a preposition...... I mean this to be a “life is good” letter, I still have things to do, and plan to do them. I am also a realist, and realize that life is short, and none of us is guaranteed another week of life, and that high milage guys my age may drop over any time. When this happens for me, it will not be a tragedy.... a short life, a misspent life, a life filled with anger and fear..... tragedies all, but none of those things apply to me.

I need to wrap this up, and get back to my pre-surgery activities..... If you want information regarding the surgery, in the east, call my sister Peg, or my brother Bill, Karen will keep them informed. In the west, call Karen (661 313 8158) or Terri Lynn ((951 306 9586). I will, of course, post a blog as soon as I am able.