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.

Code "pissed off" in the pre op

So on the 6th I left for the hospital at 8:30, after a shower and a special wipe down with what appear to be huge baby wipes. They contain special chemicals that fight infection...... also special wipes for my man parts..... apparently that is where infections hide to gain entrance into the hospital..... Of course, no food or water since the night before.

I get to the hospital, manage to “checked in”, and begin the wait. At 11:00 get called into pre op. I answer the questions, get into the fashionable paper gown, and have an IV installed. Then the wait..... High anxiety, hunger, and thirst, and more waiting..... and waiting..... at nearly 2:00, I get the news..... no surgery for you!!! WHAT????? You can’t do this to me!!! “we are sorry”... “we are very sorry”..... “we are very very sorry”......

Then they said wait and we will remove the IV, I said “no wait necessary, I will remove the IV”. I began the process, and instantly 5 people appeared, grabbed my arm, and treated me as if I were committing suicide. They quickly removed the IV..... no waiting necessary.

Of course they said it was an emergency that caused my surgery to be canceled, but I had over heard the staff talking about “over booking” of the OR, and over booking by doctors. Guess that I will never know. I am pretty sure that they have never said to a canceled patient “sorry, we over booked the room, and someone had to get shit on, and we decided it would be you”.

Anyway, I was pretty upset, and rude as I left.... no raised voices, or property damage, but they certainly didn’t have to guess what I was thinking.

I am waiting to be rescheduled.....

Less than 3 weeks

Ok now.... things are moving forward. Pre op exam on Tues. June 3rd, fistula and port surgery June 6th, and of course, kidneys out on June 18th.

I have been studying up for the changes that are coming..... dialysis takes only 3-4 hours a session, not the 7 hours that I thought. It seems that modern technology has reduced the time necessary to filter the blood, and draw off the excess liquid.

I will be going to a dialysis center for a couple of months because my fistula will not be ready for use until then, and only trained professionals are permitted to mess with the port. Apparently, it goes directly to the heart to accommodate the volume of blood necessary for dialysis, and an infection could be fatal.

Home dialysis will be available and will consist of  3 hour sessions, 6 days a week. The one day off every week appears to be for convenience, and doesn't have to be the same day every week. I am supposing that diet and liquid intake will be extra strict on the non dialysis day.  Anyway, the process is fairly sophisticated, requiring a 70 lb. machine sitting on a base that contains a large reservoir for the liquid,  a filter, and 6-8 gallons of liquid per session. The machine mixes its own liquid with help of about a gallon of dry chemicals. Chemicals and filters are delivered once a month, and the machine itself is connected to a water supply and a drain.

Dialysis must be done with a trained partner in the room due to the danger of passing out, followed by death. I expect I will learn more about this during the 3 weeks of home dialysis training.

All of this appears daunting, and very intrusive..... a huge imposition into ones life. But dialysis is really the easy part. The hard part is the DIET..... Just a few examples, no red meat, no potatoes, no milk, no tomatoes, no doritos, no ice cream, no pizza, no cheesecake, no nuts, nothing with salt ..... It goes on and on. One tiny glitter of light in the diet of darkness... NO BEANS of any kind. Add to this, severely restricted fluid intake, and your standard low sugar and low carbohydrate  diabetic diet. What is left is barely enough to sustain life. I suspect that it will be worse than cutting weight for wrestling. At least then there was always the week end binge to look forward to.

So I mention how bad this sounded to the dialysis class instructor..... Her response, “would you rather die” (I exaggerate slightly for effect).... clearly she had dealt with people like me many times before. So, I had to admit that she had a pretty powerful point. She also pointed out that there 101 countries where dialysis is only available to the rich. She went on and on, and finally I broke down and agreed that I was very lucky to be losing my kidneys, and was looking forward to the strict diet.

There will be regular blood tests to keep track of various chemical levels in the blood. The list of dire consequences, for cheating on the diet, is frightening to say the least.

Anyway, it is what I need to do, and I am hoping that my urge to live will overcome my lack of discipline, and the new diet will become a habit. I am also expecting major weight loss. In truth, I am very lucky that the technology exists to keep me alive.  Not too many years ago, I just would have gotten sick and died.
 
I am currently working on my” bucket list”. I plan to eat as much salty red meat, and drink as much milk as possible between now and the 18th. Toward that end, I took Karen out to lunch today at the best “meat” restaurant in town..... I had prime rib and a baked potato.... Today, life is good.

Next on the list of things to do

Ok now.... It has been almost 3 weeks since my last chemo, and I am feeling much better lately. I  still tire quickly, but things are getting better for sure.

On the agenda this week, dialysis class at the dialysis center on Wed, “vein mapping” with the vascular surgeon on Fri. Next week likely out patient surgery to create a fistula, and install a port. These are to facilitate dialysis, which will begin after my kidneys are removed on June 18th.

There is still no way to stage my cancer..... that will happen after the kidneys go to the pathology lab..... Stage 1, 89% chance to survive 5 years, stage 4, 16% chance to survive 5 years. Of course, hoping for a good report.

Another interesting statistic..... average life span of people going on to dialysis..... 4.5 years. Yikes, but not as bad as it sounds. That stat includes all of the people who lost kidney function due to other diseases that are ultimately terminal. I am not sure how much that affects the numbers.

It is said that everybodies cancer is different, and that “you are not a statistic”. Ok, but the numbers are real, and I notice that they bounce around in the back of my mind, and find their way into my daily decisions. I have noticed that I am giving things away, finally setting up that Living Trust, and generally just “getting my affaires in order”. Not really a conscious decision, just things that I notice.

I expect that this next  month will be the best that I will feel for a long time. I am not sure how one feels while on dialysis, but I am sure that you spend a fair amount of time with blood chemistry that is not optimal. I am hoping to minimize this issue by getting set up with “home hemo” dialysis. I know that it sounds slightly pornographic, but really is a home set up of the same system that they use at the dialysis center. The difference is that you get to dialyze  everyday, and probably spend more time in the “sweet spot” of blood chemistry. Additionally, you are able to drink more liquids, and eat a less restrictive diet. It is not for the squeamish though, as you are stabbing yourself with large needles, but I think that it is the healthiest way to survive dialysis.

I will have more details regarding all of this in the near future.

End of chemo

Well, chemo is over, at least for now. My last session, scheduled for last Tues, was canceled. I  woke up last Sun with a temp of 102, well past the 100.5 that should trigger a trip to the hospital. Karen made the calls, and took me to the hospital. Short story, I was there until Tues afternoon.... many drugs, fluids, and 2 pints of blood later, I was deemed to unhealthy for the last chemo infusion. Guess that they got tired of keeping me alive, only to make me deathly sick again.

It is not discernable what benefit the last infusion would be, but getting me healthy enough to survive kidney surgery was considered more important.

On Tues, I met with the surgeon (Dr. Daneshmand, USC Norris cancer hospital) who will remove my kidneys.... seemed like a good guy, and is one of the best in the world regarding kidney cancer. I consider myself fortunate that he is available. The surgery itself is similar to the bladder removal in its recovery period. Once again, it feels like I have signed up for a train wreck.  #5 open abdominal surgery, should have put in a zipper.

The next agenda item is a fistula (needed for dialysis), and a “port” to use while the fistula matures (1-3 months). This should happen in 2-3 weeks.

I am still tired and sick from the previous chemo. I will report more when some energy returns.

Close to the end of Chemo

Here we are at the Day Hospital, next to last chemo infusion...... the home stretch. I could never have understood how debilitating this process is. It is hard to think of an example, but..... Sometimes, I would rather watch opera, or Oprah for that matter, than get up to get the TV remote. Too tired to read, or to have a conversation. Wake up in the morning wishing that the day will be over quickly.

My hemoglobin count has dropped through the floor due to the chemo. I am not sure, but I think that is the stuff that carries oxygen to the muscles. So, I probably feel about the same as a runner does at the end of a marathon.... starts to explain my energy level! I am a bit concerned regarding my heart. The poor thing is working overtime trying to supply my bodies' craving for oxygen, but is having to deal with oxygen depletion while it works.

 I received a “unit” (could be a pint) of blood during my last infusion two weeks ago, and am getting another today. The doc wanted to do two units, but with all of the other things going into me, there is not time today. Apparently it is not a simple as turning up the faucet. I am scheduled for another unit next Tues. when I finish my chemo regimen.

It is a bit disturbing to ponder who donated the blood. The USC medical campus (beautiful and modern as it is) is in the middle of...... let’s just say an area of minimalists.... people not weighed down with expensive possessions..... you know, folks that have no carbon footprint. I did notice that I suddenly have an urge to acquire some cheap wine and a shopping cart, and have been checking out camping sites under the various bridges near the hospital. I suppose that it is possible that the donator was/will be a USC med student, in which case I will be on the look out for urges to clean my car, and eat sushi. I guess that these are the chances one must take.... probably would have been better to stay healthy.

Sometimes I forget to mention the support offered by my friends and family, both East and West coasts. Karen and her son Michael have been selfless in their willingness to care for me. I am not sure that I would survive without them, and will probably never be able to repay the debt.

I had/have no options regarding my situation, but all of the other people who offer me help and support are volunteers... it is a distinction that I consider often.

I meet with the kidney cancer specialist next Tues after my chemo infusion. I expect to discuss my surgery with him, and have him recommend a nephrologist who will handle my upcoming dialysis.

It will likely be at least 3 weeks before I start to feel normal again, so, no promises regarding the next blog update.

Tired of Chemo

Well, it is my week to feel better..... I just past my “Tues off”, and will not get more chemo until next Tues. There is a, apparently, an accumulative effect of this type of chemo that is just kicking my butt.

I wanted to write an interesting blog piece, but am really only able to let you all know that I am still alive, and kicking. This will be my last cycle of chemo. Long day next Tues, and short day the Tues. after that. I will then have 4-6 weeks to recover, then a bilateral nephrectomy...... That is the medical term.... both kidneys come out, and, I am guessing that dialysis starts shortly thereafter.

I am meeting with a vascular surgeon on Fri to see about getting a “fistula”.

 http://www.nhs.uk/Conditions/Dialysis/Pages/How-haemodialysis-is-performed.aspx

Cut and paste for a good discussion of the dialysis procedure.

I am not sure when the next update will be.

Chemo, the inside story

This report comes to you from the “belly of the beast”.... Yup, deep inside USC Norris Cancer Hospital chemo infusion unit known as “The Day Hospital”. A dark and gloomy  place by its very nature. That is, the place, and the patients...... The staff, quite the opposite.... They are, with out exception, cheerful, kind, and compassionate, and do a great job. I am not sure why the doom and gloom does not seem to rub off on them, trying to not let it rub off on me.... Maybe just another interesting thing to think about.....

The cat scan, done Friday, fell prey to the “Southern Ca. Friday Afternoon Syndrome”.... you know..... away from her desk, unavailable at this time, leave a message, if this is urgent, call 911, etc.... Nothing really gets done after noon on Fri. The freeways are even clear on Fri. afternoon. My oncologist, may be the exception. She met with me, looked at the most recent scan, compared it to the last scan, and said that it looked good.... However, we must wait for the radiologist report, and she would call me if the report was less than wonderful. No call so far.

So anyway, as I type, poison... YES POISON,  (poison >noun 1 a substance that causes death or injury when introduced into or absorbed by a living organism.) is being pumped deep into my body. Ok, I haven’t experienced death, (yet) but certainly have experienced injury. Oddly enough, this part is not too bad, and tomorrow wont be too bad, it’s later this week when the s... s... stuff hits the fan. Short chemo next Tues, next update sometime after.

I am not sure of all of the things that are pumped into me, but they include anti-nausea meds, and potassium and saline solution for hydration. The Gemzar and Cisplatin are apparently so toxic that the nurse must don a hazmat suit before handling the bags, and there is a special drip proof fitting to hook the stuff into my picc line. It is hard to imagine what horrible effects this substance would cause if unleashed...... I am hoping that the cancer is reeling as a result of this chemical warfare.

Today’s ordeal will take about 12 hours. Blood draw, wait for lab results, wait for doc to ok todays chemo, wait for pharmacy to make up the prescription, jump into the bed and get hooked up. Add an hour travel time each way, and it turns into an all day event. I suppose that writing this blog is useful practice..... doing something useful while hooked up to machines..... Dialysis = 2 years, 104 weeks, 3 times a week, 312 days, 7 hours a day, 2184 hours to do something useful.

I could just watch TV..... Or write a book... with that much time, a book series... Become an authority on almost any subject... OK, OK, “more” of an authority..... LOL  

“Cancer for Capitalists”, “Dialysis Days”,  “The Darkness of Dialysis”, “Dialysis for Fun and Profit”, “Dialyzing for Dollars, My Triumph over Adversity”, “an exciting, introspective personal memoir by fantastic new author”..... The ultimate “Lemons to Lemonade” story..... Special guest on the Rush Limbaugh show..... Interview on Fox News..... Nation wide book tour.... HEADLINE CALIFORNIA: “Cancer Patient Refuses Transplant Kidney to Extend Writing Career!!”   I will probably need to buy some new T-shirts.... I can hardly wait.

Chemo, a whole new experience

So, It has been 7 days since my last chemo. I am still not feeling well, but seem to be getting a bit better as time passes. I guess that I am having all of the standard chemo side effects. Most of them are tolerable, but the worst is the fatigue, and complete lack of any endurance. It is hard to explain, but if I am thirsty, I would rather wait until someone is able to get me a drink than get up and go the 10 steps to get my own drink. I met an interesting man at the chemo hospital. He told me the story of setting in his chair, wanting to be in bed, but too tired to get up and go to bed. I said that I knew exactly what he meant, and we both had a good laugh. I still cannot walk more than 20-30 feet without getting out of breath.... If I walk more than 100 feet or so, my legs will start to burn just as if I had a long workout. Very strange stuff indeed.

I want to make note that this is not complaining, because complaining is not my nature. Complaining is also against my prime directive of remaining cheerful, optimistic and fun to be around. I am merely  reporting the facts for those of you who study these things. Lol This is, after all, a medical condition blog.

The silver lining, for those of you who believe that there must be a silver lining, is 20 lb weight loss, psoriasis is completely cleared, and I now have a good reason to ride in those electric carts at Walmart...... Woo Hoo Just thinking, if the chemo made me taller, and grew more hair, I would consider doing chemo just for the side effects even if I didn’t have cancer.  Plus, I can just picture those cancer cells suffering the same as I am...... kind of gives me a warm and fuzzy feeling.

I am now half way through the planned chemo, and this is my “Tues. off”, so I am hoping for a good week. I have plans to get a lot of things done this week. LOL

My cat scan that was scheduled for today has been put off until Fri. due to conflicts at the hospital. USC really does a good job with these things..... I will be able to see the Doc and the scan results later the same day as the scan. This scan will be compared to my last scan before chemo started, and we can see if the treatments are having the desired effect. If so, full speed ahead with the rest of the chemo, if not, I am not sure, but I think that we may change the chemo recipe.

Next update scheduled for after the Fri. cat scan.

Lesson learned

This week I learned not to plan things for after chemo infusion..... I am feeling poorly, and will report more soon.

A blast from Pa.

This blog post is coming to you from Pa. Where the weather is cold and inhospitable but the people are warm and friendly.

I got out of the hospital on Sat., early afternoon...... one of the great feelings of late. The home health care nurse came to Karens house Sat night and instructed me regarding the self administered IV system. Each dose consists of a pressurized ball about the size of a large orange.... Rubber glove, clean the connectors, attach the IV line, wait about 2 hours, unhook the IV line, flush the picc line, and fill the picc line with heparine. (“Picc line” = an IV line that goes in at the upper arm, and through a vein, to within inches of the heart.) Time consuming and awkward with only one hand, but not too bad. I was able to do what ever I wanted during the infusion, and able to do the set up and finish up in the baby changing station of any modern restroom. I have to say, that I got lots of strange looks.... IV drug abuser perhaps?

Monday, I was able to make my yearly pilgrimage to Pa. For the state wrestling tournament/family reunion. The discharge planner at USC made this possible with a tenacious effort regarding “home health care” provided in Ca. and a blood draw in Pa. In spite of the best effort, I expect billing problems with medicare. If I remained in the hospital, all drugs and services are 100% paid for, but with home care, (saving medicare thousands of dollars) my drugs are $75 per day. Got to love the logic. In addition, I will have 2 different providers billing on one prescription, which apparently is frowned upon.

The trip went well.... I was very easily fatigued, and needed a wheel chair to make the long trek from the parking lot into the venue, but was able to climb the stairs to and from my seat as long as I could rest immediately after. I am not sure if it is the chemo, or the antibiotics that is causing the problem, but it really doesn’t matter, it is what it is, and just needs to be accommodated. Many thanks to my family for putting up with my limitation.

I had the good fortune to hear an inspiring 5 min commentary. regarding the effects of “limitation” on his business. He is an incredibly successful sales manager for AFLAC, and his “quota” goes up every year. The question came up, “How can you do better every year in spite of the poor economy?”  The focus of his opinion is that you must first get your own mind right regarding opportunities and limitations. It is easy to find reasons for failure, but it is also possible to see the opportunities that always exist. One always looks for evidence to support ones opinions, which ever one that you focus on will be the one that dominates your thinking, and dictates your actions. He is successful because he is able to lead his sales force to focus on the opportunities.... simple, but profoundly powerful.

This concept hit me like a message from God. I realized that I have been thinking about the limitations of my situation, and ignoring my possibilities. I am not saying that there is a “silver lining” in my situation, but there are still opportunities available to me, and the more that I consider this, the better life will be. A simple concept that will likely need to be re-enforced from time to time, but could be the key to “life after trauma”.  I am extremely fortunate to be borne into a family as talented and thoughtful as mine.

Getting out, Woo Hoo

Ok, so I didn’t get out of jail ..... It is 4:00 PM Fri. And I hope to get out tomorrow, again tomorrow. The infectious disease people have finally made a decision, and are trying to arrange a self administered IV of something referred to as Vinco.  It is a heavy duty antibiotic..... 2 - 6 weeks depending on test to be taken in a couple of weeks. The big question, has the infection reached my heart..... fairly serious stuff I am thinking.

Apparently my infection (s) are somewhat rare and/or hard to eradicate. Just lucky, I guess.

It is hard to believe, but the folks here have made my trip possible. It involves  deliveries of meds and an IV pump to me in Valencia tomorrow, and then meds again in Clearfield, and lab work to be done in Hershey Pa. This has all hit the fan within the last 3-4 hours, and at one point, I had 2 calls on 2 different phones, blood being drawn from my left arm, and a nurse working on my IV line in my right arm...... kind of like a SNL skit.

My chemo has just been started, and will be finished this evening. Tomorrow morning I will have a “pick” line (deep vein IV that will last the 6 weeks if necessary) installed, and then be out of here.

I just found out that my Medicare part D prescription plan will not pay any of the cost of the “home meds” that I need..... just an extra $700..... I’m not sure why I am paying a monthly fee, if they pay nothing.

Karen has been an angel during this ordeal, I can’t say enough good things. Thanks also to Terri Lynn, who has been handling my Frazier Park business. It is easy to get caught up in the “bad” of my situation, but in spite of the nasty parts, I am thankful for the people that have stepped up to help me

 Dinner will be coming soon..... lobster tail with drawn butter and a baked potato..... USC does a great job.

Complication

So, I am to get out of the hospital tomorrow..... probably. They want to get another cat scan of my kidneys. I do not really understand why.... it has something to do with “blocked” urine, that may have been causative regarding my blood infection.

I had my first chemo last Tuesday, and started to run a fever later that week. I figured that feeling lousy was just part of the “chemo” routine, and I would feel better in a few days. Years ago, my friend Carl probably saved my life when he convinced me to seek help.... turned out that I was very close to a diabetic coma.....

This time it was Karen. On Friday, she insisted that I get it checked out, phone call to USC..... urgent care.... then ER..... then transfer from Henry Mayo to USC Norris by ambulance. Much ado about nothing I thought. 5 days, dozens of blood tests, ultrasounds of my heart, x-rays, endless body fluid samples, and a never ending lineup of antibiotics later, I am deemed well enough to leave. Not for sure, but probably.

The plan is for 2 weeks of IV antibiotics administered at home... not my home, but Karens home. It is possible that I can get a “self administered” IV arraignment set up, which would allow me to make my planned trip to PA. Next week.

My chemo that was scheduled for this past Tues. Was rescheduled for this Friday. Assuming that my blood passes all of the tests Fri. Morning, then a 5 hr. infusion of Gemzar. I have noticed that in spite of the general awfulness of a chemo infusion, and the aftermath, I really have fought to get the dam thing. Guess that I am desperate to kill the cancer.

I had the good fortune to attend some high school football games this past fall, and noticed that the entire event had the unmistakable aura of “youthful exuberance”. Go to a rodeo, can’t miss the heavy layers of testosterone that blanket the event. You get the picture, places/events have a feeling..... graduations are oozing parental pride, etc.

I am not sure just what the opposite of “uplifting” is, but that is what you get when you walk into the chemo ward. Doom and gloom is everywhere, and seems to seep into every person and thing there. Really quite disturbing, and difficult to ignore.

It seems that this is just another of the battles that needs to be won in the ongoing war on cancer.

First Chemo

Chemo 101..... find out who to call regarding your chemo appointment. Major SNAFU regarding my appointment to kickoff this phase of John Vs cancer.

I waited for a call on Monday to confirm my appointment, which is standard protocol  at USC Norris Hospital..... and waited..... and waited. Those of you who know me probably realize that patience is not one of my virtues.  So, I started calling..... nothing but voice mail, “leave a message and we will return your call ASAP”...... more waiting...... more calls..... no response.

I finally managed to find a person at a general number for USC Norris. I was repeatedly transferred to the same voice mails that had already failed me. Once again, those of you that know me, realize that I am unable to let these things go. So remaining true to myself, I continued to call the operator, and verbally battle to speak to a person.... any person.... At this point, the operator realized that transferring me to another voice mail would not get him out of the loop, started transferring me to real people. Picture me doing a happy dance.

Found out that Monday was indeed a holiday, presidents day, and that no one was in the department (oncology and scheduling) that I was calling. Mystery of no return calls solved..... Also found out that there was indeed a person at the “Day Hospital”, which is the place where chemo happens. It was then learned that I was most definitely not on the schedule for chemo on Tues. Only option left, call on Tues. Morning.

Tues morning, repeat of Monday process..... finally found out that chemo orders had been made that very morning, and someone should have called me. It is 10 am, I arrive at 11:10 am, for a procedure that takes over 11 hours.

The process itself is anticlimactic. Comfortable bed, TV, bathroom in room, sandwich for lunch, chicken for dinner, and many, many, many bags of IV fluid. I was surprised to learn how many drugs were involved, and how precise the timing needed to be. I left at 10:30 pm.

While receiving my drugs, I spoke with all of the people that I could not reach on Monday. I discovered that I must be mellowing in my old age, or possibly getting a bit more wisdom. I had not come across as angry or rude, but anxious and frustrated..... apparently judged as reasonable by the recipients. My messages motivated the doctor and the scheduler to pounce on my problem, and take care of business. My “message decorum” may also have been influenced by the respect that I have for the doctors and the support staff at USC. They truly are a first class operation from top to bottom. Great facility, great staff, great attitude, and some of the best medical talent in the world. I am amazed that this quality of care is available to someone like me.

I also realized that nobody in the health care business cares as much about me as me...... and that is very reasonable.

Wed. morning awoke with no appetite, and a bit of nausea..... will try some “fix it” drugs.   Comments are always welcome

The chemo plan is in place

OK, so the meeting with the oncologist is in the book. Yes indeed, I have been scanned, poked, prodded, and inspected in all possible ways, and in the words of Arlo Gutherie, they have let no part of me untouched. The scan is to check for cancer in distant parts of my body, and to have something to compare pre and post chemo.

My last post contained a big mistake..... This round of chemo is not a  “last chance weapon deployment”. The Doc. Said that future chemo, if necessary, was possible during dialysis. It is good to know that there are options available down the road.

I have been deemed to be healthy enough to receive chemo..... I never realized that was in question, but in any event, I start chemo on Tues. I will have a 9 hr. day on Tues. the 18th, 3 hrs of infusion, and 6 hrs of flushing. This first day will be both Gemzar and Cisplatin. On Tues the 25th, I will be there about 5 hrs, and receive only Gemzar. The third week, is a week off..... woo hoo...... This sequence repeats 4 times.

There is no way to stage my cancer until after the kidneys are removed, thus no way to predict my survivability. Best case 89% chance to survive 5 years, worst case, 16% chance to make 5 years. It all depends on if the cancer escapes the kidneys, and where it may set up camp.

Anyway, my best chance is to have a good response to the chemo and then have the kidneys removed about 1 month later. If cancer shows up elsewhere, they will not want to remove my kidneys, but leave them in place as long as they continue to function.

I still plan to make my trip to Pa, but I really have no idea what to expect..... sick as a dog, or not too bad. Right now, I am thinking if I am not in the hospital, I will be on the plane.

A small success

Success..... well a small win. I managed to get my oncologist appointment moved up from the 21st to the 14th. This could make a big difference in the effectiveness of the treatment. Really no way to tell, but I am thinking that sooner is better than later.

My success in moving my biopsy up a week, and moving this appointment up a week make me think that I could start a new career as a diplomat, a lobbyist, or at the very least a patient advocate.... I am excited by the possibilities.

Gemzar/Cisplatin, the drugs that I am likely to receive are generally given in a “2 weeks on, 1 week off” regime. It is possible that I can fit in my annual trip to Pa. Into the “week off” part of this protocol. I guess that “traveling” is a question (one of many) for the Doc.

My theory is that even when you know that you are going to get your ass kicked, it is best to get on with it..... waiting in fear is debilitating and counter productive..... So, full speed ahead.

On to treatment

So, my path report is in, and I have seen ½ of it. I am trying to get the rest of it, but things medical seem to move very slowly. One might think that with all of the “life and death” stuff going on there would be a sense of urgency, but that does not seem to be the case.

Anyway, according to the Doc., the report merely confirms what he already knew..... the same cancer that was in my bladder, in both kidneys.

The plan is to attack the cancer with drugs, and then remove both kidneys. Yup you heard right, REMOVE BOTH KIDNEYS!!!!!   First my bladder, then my belly button, and now my kidneys. Where will it end?

The chemo is to go after any cancer cells that may be wandering around my body looking for a place to settle in and raise a family. After the kidneys come out, no more chemo possible, so it is kind of a “last chance” weapon deployment. So, after chemo, and after we deport the kidneys for allowing this nasty disease to infiltrate my personal borders, we are out of ammo. If my cancer survives these measures, then it wins.

If I win this round, then I am on to “life on dialysis”. Pretty grim, but still “life”. If I survive 2 years without the return of cancer, then possibly a transplant.

I have an appointment with the oncologist on the 21st. I am trying to move this up, but am not having much luck. All of the information exists, all of the tests are done..... the only thing necessary to begin treatment is for the doc to prescribe treatment. It seems a dangerous and unnecessary waste of time to wait 2 weeks. I mean, we just punched holes into my kidneys, and disturbed the cancer..... certainly enough to make it angry and want to find new digs.

In any event, the path is clear, just waiting for the system.

Update

The latest update:

I went into the hospital for the biopsy of my kidneys, which was successful, and gave us samples of the suspect tissues.

I got out of the hospital on Fri. The 31st, and am just now drug free enough to send out an update. The news is not good..... cancer in both kidneys.

Best case, chemo, then remove both kidneys, then dialysis for two years, then a possible transplant. Must be cancer free for two years before possible transplant.

Worst case, chemo, then remove both kidneys, dialysis, cancer returns, not survivable.

It will take 5 to 7 days to get the pathology report which is necessary to choose a chemo regime.

Dialysis would be 3 times a week at some facility, or every night at home..... anyone interested can google it.

The blog I never wanted to post

Jan 20, 2014

Disclaimer:
This blog is to inform my family and friends of my medical issues, therefore allowing me to avoid telling the same depressing story over and over. This blog is not for the squeamish or faint of heart, as it goes into some detail regarding the barbaric nature of the diagnosis and treatment of urinary tract disease. If history is any indicator, some humor, and other side issues may sneak into mix, but they are certainly not the main objective.

OK, so I stopped publishing blogs because there was no medical info disseminate, I wasn’t traveling, and nothing noteworthy in my life. Guess that I could have written “At home, nothing to report”.

On Oct. 12, I was going to update everyone that I was 4 years since my bladder removal operation, and “no evidence of disease”’ (insert happy dance here) but decided to wait until my yearly ct scan which was to be in Dec. At the end of Oct., I was shocked to find blood in my urine, or a better description....  Lots of blood with a little urine mixed in.

Blood in the urine is never a good sign, so off to the urologist for a Ct scan, and what I used to call a “poke and peek”..... an uncomfortable and humiliating procedure if ever there was, where the Doc. runs a camera up into the bladder.  So, the look into my bladder found nothing wrong, but the scan showed something “going on” in my kidney..... Not to worry, might just be an infection, however the blood and urine tests didn’t indicate any infection. Just in case, 3 weeks of antibiotic, and 3 week rest, and another Ct scan. Still something in the kidney.... so off to another doctor for a super “poke and peek” where he goes through the bladder and up into the kidney.

The attempt to snake tools up through my urinary plumbing, and into my kidneys, was a failure. Apparently, my rebuilt bladder is not navigable . The good news.... I was asleep for the attempt..... The bad news..... my urinary plumbing is now punishing me for allowing such a vicious violation. The worse news, there is something in both of my kidneys.

The next attempt will be to install tubes through my back, and into my kidneys. Then take samples out through the tubes. One doc does the tubes, and another collects the sample... talk about specialization. The down side, and of course there is always a down side, is that poking holes in my kidneys can allow runaway cancer cells out into the rest of me. The Doc. thinks that my right kidney might be blocked, so he will also install a stent into the ureter.

There really seems to be no other choice. The scans show something going on in each of my kidneys.... “thickening of the lining”.... same type of cells that line the bladder. If it is cancer, which is 80% likely, the answer for one kidney, is chemo, to prevent spread, then remove the affected organ. For both kidneys, they want to try to cure the cancer with chemo, and if unsuccessful, remove both kidneys. I shudder to think of life with no kidneys. Dialysis for 2 years, and, only then, a waiting list for a transplant????? Or maybe the Obama “pain pill”. Yikes, this is getting pretty grim.

Anyway, I am trying to move the diagnostic process forward, but am up against the dozens of things that cause things to take too much time.

I will keep you all posted.