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.