Monday, December 26, 2011

December 26, 2011

It has been a while since my last post, but I was waiting for the results of my yearly cancer scan on Dec. 20 ......... All clear, no signs of cancer. What a relief. For those of you who haven’t ever had any issues like this, it may seem like a small thing, but for me, it is huge. The longer you go without cancer returning, the better chance you have that it never returns. I always have “high anxiety” leading up to doctors appointments, but these yearly scans feel like a very real session of russian roulette.

Another bit of good news..... My insurance company, you remember Health Net don’t you, has finally paid UPMC for my surgeries back in the spring of 2009. This was not just “the insurance company doing the right thing”, but is what happened after my attorney threatened to start arbitration proceedings. (They paid my attorney as well,) I signed a non disclosure agreement, and am not sure exactly what I can say, but I am pretty sure that I can report things that happen regarding my health care bills........... My credit report should show that the “collection account” has been paid, however, it doesn’t go away, and will still reflect negatively on my score.

Speaking of credit scores, I wish mine was better.....

I was able to buy another rental house last month, and am now doing all of the normal clean up, fix up stuff that foreclosed houses need. The rent from this house will nearly fix my monthly cash flow problem.

I would buy many..... except, I am out of money, and no longer qualify for financing.

Enough with the whining..... It has been a long 3 years, but things are going very well, and life seems to be returning to some kind of normal.

Wishing all of you a great holiday season, and the best in 2012.

Tuesday, October 11, 2011

October 11, 2011

Wednesday the 12th is the 2 year anniversary of my neo bladder. My, how time flies. I have to say that it is working as well as can be expected.... not as good as the original equipment, but much better than the alternative.

I am mostly healed from the last surgery, but there is still a large pocket of fluid that needs to be dealt with. I made several attempts to drain the fluid, but didn’t have much success. The doc may have better tools, but it may be something that I have to live with.

This post is full of “good news”, bad news” stories, so don’t get depressed during the “bad news” parts.

At the end of August, I could no longer afford my medical insurance... I needed to go 6 months without insurance to qualify for the affordable, federal, “high risk” insurance pool, and it seemed like a good time to start the clock ticking. Uninsured, scary, but necessary.

I was also falling behind in my finances.... too many bills, not enough income, credit cards nearing their limits. SSDI had denied my disability claim again, and estimated 12 -18 months for a hearing date. Despondent and depressed..... if by magic, a buyer materialized for a property that I had owned for over 20 years. 2 ½ acres “out in the country”.... a place where I lived, off and on (mostly during domestic reorganizations) in the motor home, and a place for many parties and BBQ’s. A lovely place, paid for, but not income producing. The RE market around here is at a 20 year low. I was sad to sell, but happy for the little bit of money that the sale created. BUT WAIT, THERE IS MORE..... this is probably the only time in recent history that the money from the sale of this property, is enough to buy a modest rental house. More income, a very good thing.

The sale closed on Friday, Sept. 30, what a relief... doing a small but sincere happy dance. I could now pay some bills, and stop worrying for a bit.

Monday afternoon, in the mail, from SSDI..... YOUR CLAIM HAS BEEN APPROVED. Based on a letter from my doctor, they decided, without a hearing, that I would not be able to do construction work, and my skills would not qualify me for a sedentary job. So, I get a trickle of money, (most of my income for the last 20 years has been Capital Gains, not Earned Income), and Medicare..... I can now afford to be sick again... Woo Hoo...

I also get back payments from August 2009. After paying the attorney, there will still be enough to get caught up, and have a bit for a rainy day fund.

There were so many times that I felt like giving up, I cannot describe the relief.

I pondered whether to include my financial information in this blog, and decided that financial and emotional issues are a huge part of my “cancer” story, and needed to be included.

Friday, August 26, 2011

August 26, 2011

Hi all,

Sorry for the long space between posts, but I wanted to wait until I felt a bit optimistic.

I am now finished with the 2nd phase of any major medical event.... the aftermath. It is when the excitement is over, and the dust has settled.... nothing to see here folks, move along.... The anxiety and apprehension are gone, and I am left with pain, drugs, tubes, drains, staples, limited activity, etc..... This has happened after every surgery, so it is no big surprise, but still was annoying, and a bit debilitating.

I woke up Monday morning with just a little energy, and have been feeling a little better each day. I can’t describe how good it feels to wake up feeling something beside doom and gloom. When trapped in that mind set, it seems that there will never be a light at the end of the tunnel, and that life will never be anything but a never ending struggle to survive.

I have been averaging 2-3 surgeries per year, and each of them sets off a couple of months of “no energy to do anything but the absolutely necessary”. Each time, when I start feeling better, I am faced with a stack of undone chores, that take several months to get through.

Don’t want to spend too much time complaining, but definitely a sisyphean situation. In this situation, self employment is a curse. My financial situation begs me to be optimistic, innovative, energetic, and decisive, and suffers when I fail to live up to those ideals.

On the medical front, I have seen my doctor 3 times since the surgery on July 8, and am now happily tubeless. I am restricted, for ever, to lifting no more than 20 lbs, and only that if it doesn’t hurt. I am pleased to find out, according to SSDI, that this is not the least bit disabling.

Anyway, I hope that I have turned the corner on medical issues, and can focus on living life.

Ideas for my first book....“YOU MIGHT BE OLD AND SICK IF”

You look at health care options on the internet instead of porn.

You are a stranger at the bar, but the girls at the pharmacy know your name, phone number, and date of birth.

Your friends avoid asking “how are you doing”.

Wednesday, July 13, 2011

July 13, 2011

Hello all, I have once again survived the much maligned american health care system, and would like to report that they did an outstanding job of caring for me. Actually, I don’t think that it is a question of “quality of care”, but who pays for the care that is at issue. I had a 3 ½ hour surgery to remove the hernia repair mesh that was installed in Sept. Of 2010. Apparently the surgery was uneventful, and the mesh was removed.

This s procedure was not done by my cancer surgeon, but by another surgeon on his team. I am guessing that this is covered by the “medical acts” by “others” clause in the paperwork. I really don’t have any problem with this as this was fairly routine, and to have the specialists do this, would be a misuse of talent. I did know this other Dr, and had a lot of confidence in him.

Maybe because of personal choice, or perhaps some compelling medical reason, but instead of hidden, disappearing stitches, I now have 35 stainless steel staples holding me together. It should make for an interesting, frankensteinening type scar. I also have 2 drain tubes attached to 2 grenade looking reservoirs. I hope to have the staples and drains removed next Wed. at my follow up dr. appointment.

My body had a severe adverse reaction to the mesh, had built a “orange peel” like shell around it, and had continued to flood the area with fluid. The new information discovered is, that my body wall beneath the mesh had never healed, and there was still a large hernia present.

The surgeon closed the hernia by stitching my abdominal muscles (body wall) together with material that will not dissolve, but will remain in place. The hope is that things will heal, and I will remain hernia free.

That was the good news.... the bad news is... I was admonished by the doctors to not lift anything over 5 pounds for the next 6-8 weeks, and never, ever again lift anything heavy. (For those that are metrically challenged... a gallon of milk weighs 8 pounds, and bowling is out of the question) He suggested a “weight lifters” belt might be of some benefit.

The connection between my abdominal muscles is very fragile, and will never improve. I asked about my options if I were to lift too much and cause another hernia.... and the Doc said..... DO NOT DO THAT, THERE ARE NO GOOD OPTIONS.

I am trying to adjust to the reality of being an invalid that doesn’t look like an invalid. How do I present myself to the world, looking healthy, and still asking others to carry my groceries. My friend Carl, suggested that, to make the picture make sense, that I put a 2 inch lift in one shoe, get a cane, and walk with a limp.....

I am not happy with my “new normal” but am still happy to be alive, and would make the same decisions again if given the chance. At least for now, I am trying to go with the “glass is half full” approach.

Once again, I am thankful and humbled by the response of my family and friends. I am particularly indebted to Karen, who did all of the necessary, un-fun things required to get me through this event.

Wednesday, June 22, 2011

June 22, 2011

The countdown has begun..... Fri. July 8, 2011, I am having surgery to remove the hernia repair mesh. From an anxiety standpoint, I am glad that it is happening so soon, however, I have at least 4 weeks worth of things to get done between now and then. I hope that the time will go quickly, and that life can get back to some kind of normal soon.

Monday, June 20, 2011

June 20, 2011

Here it is, the longest day of the year.... Time goes by in a blur.

I have decided that the abdominal mesh, that was installed to fix my hernia, must be removed. My body, that didn’t mind cancer setting up shop in my bladder, is continuing to fight a winning battle against the mesh that is holding me together. Misplaced priorities for sure.

My conversation with the surgeon gave me no new information, but did re-enforce what I already knew. (I had spent much time reading the accounts of people with the same problem)

Without the mesh, there is a danger of another hernia. For those of you that don’t know, a hernia is a separation of the body wall/muscle. This condition causes your internal organs to push out due to gravity, or under any strain on the abdominal muscles.

This is bad enough for someone with normal plumbing, but ads an extra degree of difficulty for someone like me. First, my bladder is not a muscle, and urination is only possible by contraction of the abdominal muscles... picture the effort required to overcome moderate constipation. Second, my bladder does not shrink like a balloon as urine is voided, it just deflates like an empty plastic bag.

For these reasons, it is necessary for my abdominal muscles to work properly, and for my abdominal organs to remain carefully contained in proper order. If my neo-bladder becomes displaced or distended, it could mean a lifetime of catheters, or worse.

The punch line to all of this is..... after the removal of the mesh, there is no way to gauge the amount of strain that my abdominal muscles will stand with out another rupture. It will be OK until it isn’t, and.... there is no good fix if there is another hernia.....

I guess that I have been a bit spoiled in my expectations, It is hard to believe that they could fix the deadly cancer that was trying to kill me, and are now stumped with a little problem of a hernia.

I have had trouble with authority my whole life. I was never OK with someone telling me “NO”. Now, my body is in charge of what I can do, and what I can’t do. There is no way to run away from this strict master.

The bad part of this is obvious..... the good part is that I am currently cancer free, and still here to bitch about things that are less than perfect.

Friday, April 29, 2011

April 29, 2011

Ok, It has been too long since I posted here. I try to wait until I feel good to post..... lets just say that I just couldn’t manage to get it done.

I got my drain out a few days before leaving for my annual trip to Pa, to visit my family. I had high hopes of being healed, and able to return to some kind of normal life, but, was disappointed again.

It seems that my body will not accept the repair mesh, and has continued to flood the area with liquid. In this incarnation, the liquid has been encapsulate, and has formed a firm, hand size bulge at the site of the original operation. (Certainly not the place that I would choose to add a couple of inches.) There are pockets of liquid in the area surrounding the bulge. In addition, I have lost feeling in the affected area.

All of that is bearable, and possibly livable. The main problem is..... when I do any lifting, or repetitive movement, the edge of the mesh begins to detach, and causes pain. The more that I do, the more pain I get.

The doctor says that there are two options: learn to live with it, or have the mesh removed. If the mesh is removed, there is always the possibility of another hernia in the now weak abdominal muscle.

Neither of these appeal to me. I can hardly imagine life with such limited activity, and the pain is sometimes not manageable without narcotics. Another operation seems equally untenable, especially one that could result in ongoing problems.

I know that “it could be worse”, and that “am lucky to be alive”, etc. I know that there are people with bigger problems than mine, and that I should learn to accept things as they are. I try to keep things in perspective, but am not having much luck lately.

I feel a bit selfish going on and on about my troubles..... My father passed away at the end of March, and my mom is now without her husband of 62 years.

I am sorry for the dreary post, but hope to do better next time.

Friday, March 4, 2011

March 4, 2011

The drain is gone.... Woo Hoo..... I tried to pull the miserable thing out, but gave up because of the pain, and for fear of doing serious damage. It felt like the thing was wrapped around some important body part, and I didn’t know what I would do if I managed to yank my spleen out.

My doctor is in the heart of Los Angeles, about 80 miles away, much of it in heavy traffic. When I got there, I was told that the doc. had just gone into surgery, and would be there for some time....
Some delay earlier in the day causing traffic to back up in the OR. I could wait for a few hours, or reschedule. Neither being a good option, I decided to wait, but threatened to throw the drain bulb into an elevator and push the button.

Eventually nurse Jacky (her real name, and a really nice lady) came out and told me that the doc. said for her to remove the drain, and so she did. The trick is.... don’t stop pulling when it hurts... LOL

It turns out that the inside part of the apparatus is larger than the outside part. The skin and abdominal wall grow tightly around the tube, making it difficult to remove.

I am very happy to be drain free, although it will take a while to get used to it. I still reach for it when I get into the car, or roll over in bed. I guess that it became like an extra appendage.

I am leaving Monday for 9 days in Pa. visiting my family, so, for once, the timing was perfect.

Monday, February 14, 2011

February 14, 2011

Well.... The bad news..... I still have the drain coming out of my belly, and it is still acting as a short leash. Where the tube enters is an open wound after all, and dressings need to be changed twice daily along with medications to prevent microscopic creatures from mounting a successful attack. I am still on restricted activity, and need to stay close to my doctor.

The good news...... I am becoming an expert on the operation and maintenance of a JP drain. However, I am fairly sure that this new skill will not land me a high paying job in the health care industry.

The rant that follows is probably more than anyone wants to know about this particular subject, but it is all that I have to report. I am not complaining, but it is an example of some of the disruptive issues that follow a major surgery.... Not life threatening, but quietly overwhelms your plans and cannot be ignored.

This drain is a result of a surgery to repair a problem caused by a surgery to repair a hernia that was caused by my cancer surgery in Oct. 2009.

The drain was originally due to come out 2 weeks after surgery, giving my body a second chance to heal around the mesh that is holding me together. The drain is supposed to prevent a build up of fluid, which, if allowed, prevents the layers of my belly from healing together. Apparently my body still thinks that “mesh” is a foreign object, and is still flooding the area with fluid.

The key, it seems, is the amount of fluid produced. Apparently, the drain tube itself is an irritant, and causes some fluid to be produced. The doc says that we remove the drain when the fluid output is reduced to 30 ml per day. Currently, I am producing between 40 and 50 ml per day, down from 50 to 70 ml per day 3 weeks ago.

At first, the drain tube was stitched into place with a fairly heavy duty thread. My body was trying to expel the foreign object, but the stitch held fast. At about the 3 week mark, the thread deteriorated and let go. I managed to keep the tube in place with careful use of various tapes. The trick, I found is to find a tape that holds, but does not remove skin when removed.... It is a delicate balance to say the least.

For those of you still reading.... there is a punch line ahead.

My plan, now that we are into a new year of deductibles, was to wait for the proper time, pull the drain out, declare that it happened while sleeping, and save myself the cost an office visit.

While working on a clog, (a fairly common problem) I was trying to work the tube in and out a bit to help clear it, but it wouldn’t budge. I discovered that my body, though it seems to repel necessary repair mesh, has embraced the drain tube, and has become one with the tube. It just keeps getting better and better.

I have a call in to the doctor regarding this latest development.

Saturday, January 8, 2011

January 8, 2011

It has been a little over a week since my latest encounter with the American health care system, and I am beginning to feel a bit better. I have a plastic drain tube coming out of my belly attached to a hand grenade looking collection device. Right now, my belly looks like a child’s first attempt at crayon art. This really is not so bad, as I have never been able to profit by my good looks anyway.

It is a little bit painful, and a lot inconvenient. This drain clogs occasionally, (thank goodness I have a background in plumbing) and adds a degree of difficulty to even the simplest of activities. As you might imagine, mens fashion does not really lend itself to concealing this type of apparatus, which adds to the “shock and awe” in public situations.

Unfortunately, my endurance has been missing in action. For me, this seems to be part of the aftermath of general anesthesia.

These things are just added to the long list of “un-advertized specials” that were not in the “cancer as a hobby” brochure. I am not complaining, just pointing out the situation. I realize that the alternative would be worse, but still have an urge to tell the whole story.... This is, after all, a “trip through illness” blog.

It is still too early to assess the success of the procedure, but I will probably know in another week or so.

All of this, of course, has put a serious crimp in my travel plans for this winter.... not to mention a crimp in my plans to live indoors, and eat something other than pet food. I am now trapped by snow, washed out roads, dr. appointments, artificial body plumbing, and the need to start making money. I am currently unable to move my home, and am feeling a bit claustrophobic and vulnerable..... LOL

The need to create revenue is keeping me awake at night. I have some ideas, and will let you all know as soon as I am brave enough to pull the trigger on a new venture.

Even though there are parts of my situation that are not good, (OK, parts are just bad) my energy seems to be returning. Hopefully, this is the key to getting back on track.