Any day above ground is a good one

Well today is one week since I left the hospital and things are very good. I did initially have some upset stomach problems and soreness but this has cleared up. The last three days have been exceptionally good for me. I have been busy at work and I feel like I have the energy to do what I need to do and I have been a lot happier too. Am I just waiting here for the other shoe to drop or is this going to be relatively easy? So far I have had no urinary symptoms other than a little more frequency.

That brings to mind that I was thinking recently that I have been called upon to describe in great detail my urinary activity as well as descriptions of the size, shape, color of the other deposit we all have to make. If you are getting treatment or you are about to, just get use to it. Everyone is interested in “how strong is your flow” or “do you have starting hesitation”, “does your stream start and stop”, “how often do you go”, ”how many times do you get up at night” and on and on. They have even managed to measure how much urine is left in my bladder after going to the bathroom. They have inspected the inside of my bladder and urethra with a scope that projected the image on a TV screen and I hear it is up for an Emmy. I must say I missed most of it because the scope that was being used seemed be as large as a fire hose and I "might" have been flopping around a bit on the table from the discomfort. With out a doubt the exterior has been scrutinized many times. And every Doctor I meet of course wants to do a DRE or stick a sizeable object into places where sun don’t shine. This all goes with the turf of having prostate cancer and/or urinary issues. If you have problems with anything I have said get over it!!! It is your life that we are talking about and your pride and your dignity have nothing to do with it, however your urinary track does. So suck it up and do EXACTLY what the doctor wants because it is in your best interest.

Because of all of this I can’t tell you how happy I am that at this point my symptoms are minimal. All of the potty talk is getting to me besides I do have my dignity to think of….

I am just going to assume that this post of mine will resonate with some of you out there.
I am so conscious that there is a huge part of myself that delays gratification, postpones pleasure, denies myself rest and so on.

Shortly after my mother was diagnosed with terminal lung cancer, she said something to me that I think of often.

She said, "Paula, last summer I was drawn to take my sterling silver flatware out of its case and put it in the kitchen silverware drawer for daily use. I was somewhat puzzled as to why I felt the urge to do so. I guess that a deeper part of me knew that my days were winding down."

Here are some things that I do:

Telling myself that I will allow myself to lie down and read AFTER I have gotten the house all shaped up

Telling myself that one day I will get to Hawaii and even though I have the time and the money not doing it because I assume that one day it will happen

Saving those new candles to burn for when we have company

Waiting to have a little get together at my home with good friends rather than just doing it now- spur of the moment.

Postponing listening to all of the songs on my new CD

Deciding to call my seventy-eight year old father tomorrow instead of today.

Behind all of these choices is an assumption. Behind all of this is the assumption that I will have a tomorrow.

We sure do assume a lot. Life- so fragile. Now- so real. Tomorrow- a mere dream.

BE HERE NOW. It took me years and years to understand how important it is to be present at all times.

When we are talking with a friend, that is all we should be doing. We should not be cooking, or cleaning or driving. We should be talking with our friend.

When we are resting, we should be lying about just staring off into the moment. We should not be watching television or working on the laptop.

When we are eating, we should be chewing, swallowing and tasting. We should not be thinking about what happens next.

It has been my world for too long that I spend much time anticipating "what is next" while in the midst of the now.

Just some random thoughts after a couple of glasses of Japanese plum wine.

BE HERE NOW.

How many little things to we put off each day that would provide us with a modicum of pleasure in the the moment? Just think if we were to allow ourselves to totally enjoy each and every moment by giving ourselves permission to induge those small passions. Each of those small passions would add up to much fuller and more blissful moments.

What ARE we waiting for?

This is strictly an informational post. I just want to tell people something that I did not know until seven years ago when my sister was diagnosed with breast cancer.
It is the differentiation of the cells of the tumor that are the most important prognosticator for survival.

Three men can have Stage III cancer (any type) and one might die fast, the other might live for some years to come and one may live for a long time and die of something else altogether.

IF YOU OR A LOVED ONE IS DIAGNOSED WITH CANCER, YOU MUST ASK TO RECEIVED A DETAILED COPY OF THE PATHOLOGY REPORT. IT IS ALSO VERY IMPORTANT TO HAVE THE SLIDES ANALYZED AGAIN BY A PATHOLOGIST WHO SPECIALIZES IN READING SLIDES FOR THE TYPE OF CANCER WITH WHICH YOU OR YOUR LOVED ONE IS DIAGNOSED. If your report is read only by a person who reads breast, testicular, lung, prostate, skin cancers all in a day’s work, then your report is not being read by a person whose eye has become trained to the nuances of your particular cancer.

People go around saying uniformed things like, “Oh, breast cancer is not that serious anymore”, or “Prostate cancer rarely is deadly.” Bull. It is how normal or abnormal the cells look under the microscope that really reveals the aggressiveness of a cancer.

Unfortunately, most people never receive their path report from the doctor. It is not hard to learn to read one. You just get on the Internet and look up all of the terms. Any reasonably intelligent person with Internet access can learn within a couple of hours what the true story is.
Many doctors do not even bother to discuss the cellular situation with their patients. They just tell them that they have cancer and what the stage is. It is NOT the stage that is as significant as the grade. By grade I am referring to the way the cells look-  its aggressiveness. So theoretically a person can be diagnosed with an early stage, but if his cancer is of a high grade he could be dead way before a person diagnosed with a later stage but a less aggressive cancer.

I am including this post because I know there are many folks like Dan and me who want to know all of the parameters of their disease. It is only in being truly informed that one can make the best treatment decision. It is only in being truly informed that one can explore options. It is only in being truly informed that one loses some of the fear, for I believe that what we do not know is far worse than knowing even if the facts are not good. Avoidance and denial create far more anxiety.

Use your good minds to learn as much as you can.

LEARN TO READ A PATHOLOGY REPORT.

By the way Dan’s cells are upper medium or low high grade. Not great, but I have met many men with prostate cancer on the Internet who are still living ten years later and had much worse situations than Dan’s at diagnosis. We have good reason for hope.

Anyone who knows me knows that I analyze everything. Sometimes I get a bit overly zealous, but that is the English teacher in me; I love to learn. In my opinion, that is a good thing in our case. We will look to today, and we will look toward many tomorrows.

Dan and I have really been glad to have this blog. It has been therapeutic for us. It has helped to keep the communication doors open in our relationship. Shutting down out of fear would make the situation far worse.

It has been a while since I posted. There is a reason for that, and it is this. I must distant myself psychologically from this cancer diagnosis. It is not good for me to be reading and writing about it so much. It is not good for me to be talking about it so much. Quite a balancing act I must say since Dan has the cancer, and I live with him. I have let the situation get “under my skin” so to speak, and I have been looking at the world through glasses that see only degeneration, loss and death.

I must look to other things in my life that are as real as Dan’s cancer. I must look to those things in my life that make me feel joyful. I was just starting to turn that proverbial corner to more optimism last week.

We arrived home from Sarasota this afternoon. Dan and I did get more sobering news regarding his situation. Dr. Dattoli met with me after the surgery and told me that there was a “large volume of cancer’ and that the cancer had escaped the prostate. Dan has been upgraded to a more serious stage of the disease. He must continue with the hormone ablation therapy, and he must return in three months for eight more radiation treatments. I asked the doctor if Dan had been told this latest development, and the doctor said that he had not. The doctor asked me if I wanted Dan to know. I said of course. Dan and I are not playing mind games with information. We already have enough stress in our relationship. I told Dr. D. that I wanted him to tell Dan because Dan will listen to the doctor better than he listens to me.

We had pretty much suspected that the cancer was outside of the prostate, but we were hoping that was not the case. Statistically, Dan still has a very good chance of living ten years or more and even longer if he is in the “winning part” of the statistics. The next three years will be the most crucial in terms of if this treatment “takes”. It will be a good while before we will get a good read on this. Any scans or blood work will not be indicative of much of anything since the drugs and radiation have created an environment that will give artificial readings.

We live. We wait. We hope. The facts are all out there on the table. Dan must adjust to many things now that he did not know two days ago. He thought that he would not have to have any more radiation. He thought that he could go off the hormone therapy. He hoped that the earlier indicators that the prostate cancer was not contained were wrong. He is now on even more drugs than before. That, too, will be another adjustment. He is also forbidden to consume spicy foods, anything with tomatoes, caffeine, tea (not even herbal), carbonated beverages and alcoholic beverages. He does not like this. Dan enjoys his food. He loves to cook.

A diagnosis of cancer involves have to give up a lot. One must let go of certain illusions of ever lasting health. One gives up familiar routines and habits. We as a couple slowly must adjust to what is referred to as the “new normal”. There is every reason for hope as the statistics are on our side. He has nearly a 100% chance of living five years. He has an 80% chance of being disease free in ten years. If he makes it ten years, then he has an even better chance of living what would be his normal life span. We will each deal with this in our own way. I plan to exercise a lot, listen to rock and roll daily and see much more of our friends than I have been. Dan will hopefully join me in this. There is nothing more to talk about in terms of the cancer at present. It appears as though he has made it through the implant procedure with no side effects. The early indicators are excellent.

I spent most of the day at the hospital only taking a brief break to go two blocks down the street to my sister’s house. I saw a lot of sad sights at the hospital. I saw a fourteen-year-old boy so skinny from cancer that he had to be supported by his mother and grandmother. I saw an eighty-year-old blind man trying to find the cancer ward so that he could visit his wife. I saw a man in his thirties without health insurance writhing on the floor in pain in the emergency room. The nurse in attendance yelled at him and told him to sit in a chair. She offered him no help. Melanie and I went and bought him a bottle of water.

Sarasota, Florida is not a good place to be if one does not have financial means. I could tell that the well-heeled retirees in the emergency room were shocked to see a person who had no health insurance. I hope they were more shocked by the treatment he received from the nurse. We happened to be in the emergency room because as coincidence would have it my eighty-year-old aunt was admitted yesterday with a serious kidney infection. My sister and I spent most of the day navigating the maze of hallways at Sarasota Memorial Hospital. We both commented on how hard it must be to be very old, frail, and hard of hearing and have to find one’s way through the bureaucracy of the medical world.

I absolutely know that I want to become a patient advocate at some point and use my good mind and my very assertive approach with doctors and nurses to help people who cannot help themselves. I don’t care if the doctors or nurse like me. They are hired help, and if they find themselves in that line of work then they must perform adequately. If they do not want to, then they must leave the profession. Lord help the old and the weak and the uneducated folks.

Sarasota has become the land of the rich and yes, famous too. Jerry Springer lives down the street from my sister. Seems to me that ought to cause property values to go down. LOL. It was not that way when my sister and I were growing up there. It was a sleepy little town that just happened to be on the beautiful Gulf of Mexico. The developers are tearing down older dwellings to make room for cookie cutter Mac Mansions (read McDonalds) enclosed in gated communities. They are currently ousting old people from their mobile home villages on Sarasota Bay because as one developer was quoted in the Herald Tribune “People who live in mobile homes have no business living on the water.” When my sister finishes her teaching career in four years, she plans to leave. Most people she knows are getting plastic surgery, so they can continue to be part of the forever youthful smart set.

Our world is so screwed up. Values and morals have gone to hell in a hand basket. I have no patience at all with superficiality about aging and the American obsession with finances. We are fast becoming a country without a middle class. It is not a good place to be if one is sick and without means. Dan and I are luckier than most. It is on that fact that we must focus.

Seeds Have Been Sown…..73 of them. 73 pieces of metal that are currently radioactive and killing the cancer within me and they will be in me for the rest of my life. I can’t hold children on my lap but they can sit next to me for a few months. I don’t want to risk my critters sitting on my lap so I will have to shoo them away for months. I now worry about my laptop currently resting directly over my prostate. Will it erase years of work in a flash? But who knows? I have been wondering if I sit on a piece of unexposed film if I will be able to expose it. The things I think about worry me sometimes.

After fretting over this procedure for months now I have found that is was no big deal and I don’t know why ANYONE would opt for surgery. I was in the hospital until 7:30 this morning barely 25 hours and that was just to flush my bladder and make sure I could pee. The two things I was very worried about were the spinal anesthesia and the Foley catheter. The Foley catheter was inserted down my penis into my bladder. This was used to irrigate my bladder and to drain it at the same time. These are quite often painful upon removal. Thankfully I had no pain. None at all and believe me I was grateful and surprised. The spinal worried me the most because I didn’t understand how it was administered. I received a numbing shot of Novocain first and then a needle was inserted into my spinal column and about 1/30 of an ounce of anesthesia was injected into my spine. Didn’t hurt at all. I was under the impression that the needle was left in my back and that some sort of drip was used. My ignorance. It was no big deal. I started to get numb from my toes up my legs and up to where the injection was given. I was also given a drug to put me to sleep and I did so while 73 pieces of palladium were injected into my prostate through my Perineum. This is the area of the body between the anus and the scrotum. A perineal procedure uses this area as the point of entry into the body.

The next thing I remember I was being wheeled into the recovery room like I just woke up from a nap. But I had a very odd feeling. I felt like my legs were still in the sturrips I had been in during the procedure. I could clearly see my legs on the table but they felt like they were still in the air. It was very odd. I also couldn’t move my legs at all. This freaked me out a little but the nurse told me it was quite normal. And then I could move one foot a little and then the other. I was then taken to my room where I was told I couldn’t get out of bed for at least 6 hours because I could get very bad headache and I would not be able to balance myself to walk. It took me nearly 6 hours for the numbness in my legs to go away. I was also told to force drink as much fluid as I could and I did. Before I went to sleep I drank at least 10 pitchers of cranberry juice. I had some pain meds and I also could control when I needed some more. I had my catheter removed at about 4 in the morning and I was up and gone from the hospital at about 7:30, 25 hours after I started.

This morning I had to visit the Dattoli center for some more CAT scans to determine the exact placement of the seeds and to obtain some more meds and counseling on post op care. I can expect to have some more urinary issues like I did with the IMRT treatments but we are working on heading those off before they occur. I also found out today that I have to come back in the middle of the summer from my summer home in Michigan for some more IMRT treatments for about 10 days. I did read this in the documents that they gave me but I didn’t for some reason retain the information. Lots was going on I guess.

If the information above does not dissuade you from surgery I don’t know what will. Remember I am up and walking around today with no holes in my body and nothing removed. And frankly I am feeling much better than I thought I would. I am a little sorer than I was from my biopsy but this is nothing a couple of days of rest won’t take care of. At best with surgery you will be bedridden for 2-6 weeks. ON YOUR BACK. This is with no guarantee that the cancer will be gone. You will also have a high likelihood of having urinary incontinence and becoming impotent. All of these things in my opinion are not good. But to each their own path I guess.

So the wait begins again. In 90 days I will be back for some more scans and treatments and at that time I will be able to find out how well the treatment has gone. I have full confidence in my doctors and their staff, as I have never encountered such a professional and caring group of dedicated people in my life. They are truly passionate about what they do. True artist and I am glad I chose them as my doctors.

Today I went to Sarasota to get my pre-op workup. This consisted of me going to the Dattoli center and getting an ultrasound to measure the size of my prostate so Dr. Dattoli can plan the placement of the radioactive seeds that will be implanted in my prostate on Thursday. This is a very exacting procedure and they put a great deal of effort into the planning of the procedure. I will get another scan after I get out of the hospital to see how close they came to matching the original seed placement plan.

I also went to Sarasota Memorial to get pre-admitted and to get some blood work. So on Thursday I will just have to show up at 6:30 in the AM and I will be off to get an atomic prostate. I also found out for sure today that Dr. Dattoli would be doing my implants. It is odd that I have all of the trust in the skill of a man I have not even met yet. But this is how Dr. Dattoli and Dr. Sorace divide up their workload. Dr. Dattoli does the implants and Dr. Sorace supervises the IMRT treatments. I am sure that I will talk to him before hand but still it is odd.

On Wednesday Paula and I will go to Sarasota and get a hotel room so we won’t have to do the early one-hour drive and I can get some rest before the procedure. I will have to stay in the hospital overnight and when I am released I will have to go to the Dattoli center for a scan to see the exact placement of the seeds and compare this to the pre-op plan. I am hopeful that this will in fact be the end of my treatments, as planned, only to return for check ups. I pray that I am correct.

Again I find that a week has gone by since I have blogged and I find that I am a week away from getting implanted. I will become the man with an atomic prostate unable to hold small children in my lap. Not that I have any running around but it is sobering to know. I wonder if that means my pets too? Note to self ask the doc.

I am definitely in a different head space for sure. I am not counting the days to the next event. I am not googling “prostate cancer” left and right. I am not saying that it doesn’t come up but the thoughts are further back in my mind. I am almost viewing next Thursday as the terminus for my cancer journey. An end of some sort. Perhaps it will be an end to all the appointments, the prodding and poking, the removal of bodily fluids, the driving, and the worries. I can only hope that once I arrive at the station I don’t find a construction crew building new tracks.

The struggle of man on earth is often compared to Sisyphus of Greek mythology who was condemned to roll the same boulder uphill only to have it roll back toward him. Again, Sisyphus kept pushing the boulder upward.

And that is where I find myself at present. I cannot control any of what has happened to Dan’s health. I have felt enraged that once again another illusion has been dispelled. That illusion was that life in Dan’s and my house would remain untouched by any significant loss, and that somehow we were in a bubble protected from the big, bad, scary stuff.

Most of my family has died; I have experienced the loss of a significant number of coworkers and friends, but stlll the illusion remained in my mind that we were untouchable. Of course, logically I knew that not to be so, but most people can’t and shouldn’t live in waiting for the bad stuff to happen because one would go nuts.
I don’t believe in life after death; from where I am this is probably all there is. We are biological creatures .
Maybe our "energy" transmutes into plant life or whatever, but I don’t think that we go somewhere where we see our loved ones who have died. Oh, it is a lovely thought, but try as I might, I don’t feel that is the case. So with that in mind I believe THIS LIFE IS IT. And I do not like the way I have been living my life as of late.

I am now totally aware that I am the kind of person who for the rest of her life is going to have to force herself to feel light and hopeful- for the choice of living with the dark will only lead to more dark.We all have our individual proclivities in the way that our minds process information. Some of that is genetic. Some of that is enviroment. Some of that is choice. I am very aware that I have the ability to end it all if I just cannot bear anymore psychological pain, but I am not in that space at present, and I hope that I never am.

I just got practical three days ago about what I can do to pull myself out of my hole. I know that physical exercise really helps my spirits. I have now commanded myself to workout no less than five days per week. That does help, and that is something I CAN control. It really does work. Within ten minutes into my forty-five minute routine, I felt a lightness of heart and a lifting of spirits.

I also can clean up my eating habits. I know that too much sugar depresses me, so there is another thing I can take some control of. I started that three days ago. Candy is like mother’s milk to me. Sugar in my mother’s home was always available. Mom was a fantastic baker, and some of my happiest memories are of baking hot cross buns, molasses cookies, homemade fudge, cherry pudding and white cakes with seven minute frosting coated with coconut and filled with lemon. I cannot cook my way out of a bag, but I can bake. Mom also kept a candy jar in the house filled with those gummy sugar orange slices or jelly beans. When I go into Walgreens I literally start to salivate when I see those packages by Brach’s. Mom was not fat. She was model thin. She loved looking good in clothes too much, so instead of other things she subsisted on sugar. I must admit that if I could get away with it I would eat as much sugar as possible. I was raised to be a sugar junkie.

I know that escaping into a good book or movie helps. That now must be a part of my day.

I also know that getting out of the house and away from the laptop is crucial. I work out of my house, so I really rarely have to leave it. I can sell objects online, print my own postage and just put the packages outside the door for the postman to retrieve. Staying inside is attractive for a person of my temperment. I love to be alone. I am never bored. Most of what I enjoy are things that I do by myself. However, staying in for five days in a row is not doing me any good. So I also decided that I absolutely must do something with a friend, run errands, etc. at least twice a week. Just seeing others faces, sharing a bit of laughter, even the small talk with strangers which I generally hate does bring a modicum of comfort.

I am trying to establish a "new normal" for me. I can live as Dan’s wife and let this diagnosis eat away at me, or I can
force myself to do the stuff for myself that I know lifts my spirits.

It is hard to take control of oneself. It is doubly hard when one is depressed. I have been very very depressed. I continue on an antidepressant because I do not feel that now is a good time to wean myself from it. I have taken a good long look at myself, and I have willed myself to change the things I can and to accept the things that I cannot.
They call that serenity. I’d like some of that serenity, and I will fight to get some inside of me.

It appears that my darkness is the boulder that I must keeping pushing up that hill.

I hope that some of the words I write help some folks out there in Cyberland not to feel alone. We, who live in the dark, are not crazy. We just hang there often. A therapist once told me that I am overly empathic. . My eighty year old aunt attributes it to what she calls my artistic temperment. I just call it being Paula. Whatever the reason change is in order. It has been necessary to confront my dark spaces, for it has only been in doing so that I can create a mode of attack against them.

I read the other day that life either makes one bitter or better. I want to go with the better.

…. I haven’t blogged in seven days.

Well I haven’t been in the space where I needed to talk about, "THE SITUATION", as Paula puts it. Somehow in my mind I have gotten to a plateau of some sort and I haven’t been obsessing on my cancer or the treatment I am getting. This is partly because I am in the middle of a break between my treatments. When this all began both Paula and myself were very freaked out and with that sort of feeling you want the cancer gone. Now! You don’t understand that for some cancers you have time, you don’t understand why can’t they do all of these blasted test on one day. Instead the doctors methodically go from one test to the next as the results are known. I have come to accept this at this point.

So now that my mindset has changed somewhat I am in a place were I can now obsess on the things that I obsessed on before the cancer. I believe that this is good. At least I am getting more things done.

My next big hurtle is the actual procedure to implant my seeds. This will happen on March 23 and requires me to stay overnight at the hospital. Amazingly I am not feeling any trepidation regarding this procedure. I think that with all of my previous treatments at the Dattoli Center I have realized that I am in VERY good hands. So I am letting go of trying to control the “THE SITUATION” and just let it happen, it is much easier that way.

No one will disagree that we are a culture who belives in doing things as fast as possible. I absolutely and totally refuse to multi-task. It creates stress for me. I like to take my time doing things carefully and calmly. All things.
So what if things take longer to get done? My thought is that it is important to experience our moments as fully as we are able, for the moments are all we really have that are true.

The columnist Ellen Goodman writes, "So whatever our national passion for emotional efficiency, for quality-time parents and one-minute managers, there are simply no one-minute mourners."

The myth exists in our culture that there is an acceptable time period to be set aside for grieving, usually one year. But this ignores the reality of human nature. Each person is unique: each loss is unique. The expectation of a "deadline" beyond which you no longer grieve is just plain wrong and adds to your burden. This amounts to blaming the person who is grieving for his or her suffering, rather than trying to understand it-another form of "blaming the victim."

The only reason that other people want someone to put the lid on painful emotions is because they do not want to be reminded of their own emotional pain that they have locked away.

If you do not have room for your own pain, you will not have room for the pain of others.

Coming to terms with a new painful reality takes me time. I need to write about it. I need to cry about it. I need to live with it until I have found a way to approach it with a sense of equanimity.

Each bout of loss forges our soul to be stronger and therefore more open to the pain of others. If we try to hurry ourselves through feeling, we are doing damage to ourselves.

This is my truth.

As Ram Dass told me after my mother died, "Paula, we must learn to keep our hearts open in hell."
And that is what I try to do. I do not want to go through life with a closed heart.
Closed hearts can creat a host of other problems like drinking too much, drug abuse, overeating, overworking and on and on and on.

We are on this earth to live. And for me that means acknowledging all aspects of my life- not just the parts that are efficiant and pleasant.