You are likely aware that Mary and I have spent an extraordinary amount of time over the last years teaching others how to live well with lung disease. We have lectured to pulmonary rehabilitation patients and their caregivers, to Better Breathers Clubs, and many others, and we have traveled to a double handful of COPD conferences all over the US and in London to help spread awareness and knowledge.
We are not, as I am fond of saying, just two old people trying to get into Heaven. Rather, we are trying to pay back. We owe the professionals and friends who instructed and supported us after my diagnosis, we owe my donor and his fabulous family, we owe my transplant team, and we owe the friends that we have acquired in our travels…folks who suffer from our disease, but who somehow find the sheer guts to travel, to teach, to sacrifice their time and expertise to help the rest of us.
One of the challenges that we offer to our students, to our fellow patients, is to take the time and energy to learn as much as they can about their disease. There is a tremendous amount of information out there, on the internet, from respiratory professionals, from the various online support groups and Facebook pages that deal with COPD and other lung diseases. One of the first things we did after my diagnosis of severe COPD in 1995 was to learn everything that we could about it. The old “knowledge is power” thing. (The second thing that I did was to order a treadmill, but that is another story.)
Today, Mary and I find ourselves facing yet another challenge. For those of you who may not be familiar with it, the PSA blood test is a measure of the Prostate Specific Antigens produced by the prostate gland in men. The lower the PSA score, the better. The higher the score, the more likelihood of prostate cancer. The test is not perfect, but it is certainly an indicator. Another measure is the rate at which the PSA score increases. The faster the increase, the more likelihood of cancer.
My PSA had been running around 2.5 to 3, for some years. Then, last December, during my 4-year transplant checkup, it jumped to a little over 5. Over the next month or so, it went to 7, then 10, then 42! Extremely high, and certainly cause for concern. The obvious next step was a biopsy of the prostate, to see if cancer was in fact present. That procedure, which sounds much worse than it actually is, was performed last week.
As you can likely imagine, we have spent the past weeks perusing everything even remotely associated with the prostate, with PSA scores, and with prostate cancer. We have learned about tumors that are confined to the gland itself, and about cancers that have spread to other parts of the body. Like many other types of cancer, prostate cancer can spread to just about anywhere, but tends to migrate (metastasize) to the lymph nodes and to the bones. We learned about treatments, ranging from watchful waiting to surgeries to radiation and chemotherapy.
So, what to do while we were waiting the week for the biopsy results? Well, being us, we accepted an invitation from the COPD Foundation to fly to Bethesda, Maryland to attend the National Institute of Health Town Hall. The gathering, which included 180 or so clinicians and 15 or so patients, was designed to utilize the accumulated knowledge to create the initial draft of a COPD Action Plan. The creation of the plan was ordained by Congress, who will ultimately have the final say on it. It was an extraordinary series of meetings, and hopefully a giant step in the management of our disease. The activities and interactions helped a great deal in taking our minds off of the impending biopsy results. Never mind that my mind destroyed my sleep at about 4:30 every morning. Made for some long days.
We flew out of Dulles to Denver to San Diego, and finally to Tucson. (Roughly 3,123 air miles, but the only Southwest flight that would get us into Tucson at a reasonable time.) During the first leg of the trek, I got an email informing me that a lab report had been sent to a “portal” that would allow me to access my medical records from my urologist. As you might imagine, I jumped on the opportunity to find out what the lab report might say. I even spent an extra 8 bucks for full internet access, and fought with the internet for about a thousand miles trying to get the portal set up. I wanted to see the report, if it was in fact there, before I said anything to Mary. Finally, just before we landed in Denver, I got a look at a report, supposedly from the biopsy, showing that everything was of “normal value”. Thrilled, I finally showed the report to Mary. We spent a bit of time just breathing, holding hands, and reveling in what we assumed was a miraculous reprieve. Then, I called the urologist’s office to check on my appointment to talk to the Doctor.
I mentioned to the representative on the phone that I had received a copy of the biopsy report. She checked my records, and expressed surprise that they had not yet received anything! I verified with her that we really had no actual information and that the report likely was only an incomplete form, and hung up, my heart sinking. Mary suggested that I try to talk to the Doctor himself, so I called back. Another representative answered, we had pretty much the same conversation, and she also checked my records. She stated that she had received the same form that I had on my portal, and that it indicated that everything was clear. The Doctor was, of course, with a patient.
So, what to believe? We dared not go back to the euphoria that we had experienced earlier, for fear of another deep disappointment. I, we, simply could not go through that again. So, we adopted an attitude of hope, of cautious optimism. It was with those feelings that we called Wendy, our daughter that night.
I actually slept until about 8:15, and let Mary sleep in. I had set the portal up on my tablet, and decided to see if I could get any more information if I set it up on my laptop. For whatever reason, a new report popped up. I clicked on it with a good deal of apprehension, and started reading the results of the 12 different needle biopsies that they had performed. The first 4 were normal (Benign prostatic tissue), and I started to relax. Then, the words “High grade prostatic intraepithelial neoplasia” appeared. Off to Google Search, where I learned that it meant, basically, precancerous tissue. Not great news, but it paled in the face of the next biopsy sample. It was labeled “Prostatic adenocarcinoma”. Even I know that means cancer. I prayed that Mary would continue sleeping for a while.
Back to Google…
I learned that something called the Gleason Pattern score is used to rank the relative aggressiveness of the cancer, the likelihood of it spreading beyond the prostate gland. Back to the report. I had a Gleason score of 7, which along with the high PSA put me in the “High Risk” category. A Gleason score of 10 is the absolute worst, and anything from 8 to 10 is considered very aggressive. At least I was below that. One note stated that less than 5% of the prostate was involved in tumor, which I took to be good news. I was ready for good news at that point.
Then, Mary woke up, and I had the really unpleasant task of filling her in on what I had learned. So much for cautious optimism. It was a long day. We unpacked, did the laundry, and settled back in at home with the cats. When Mary is worried, she tends to clean. Our refrigerator is now spotless!
This is not how it is supposed to work! After so many years of taking care of me, watching me deteriorate, gradually taking over many of the responsibilities of our combined lives, Mary was supposed to be able to relax a bit. My aim, my intention, one of the major reasons that I am so compliant with meds and diet and especially exercise, is, was, to stay strong enough to be able to act as her caregiver if and when she needed it. Now, with all of the news about my stupid prostate, those plans have been placed in question…
I am writing it in the hope that it will inform, that it will encourage others to seek information about their disease, that it will convince someone, anyone, that knowledge is indeed power, that awareness about the happenings inside your little body will actually give you a degree of power, of control. With control comes a certain relief of stress. It is the not knowing, the uncertainty, the lack of knowledge that brings on the worry. It causes you to wake up at 4:30 in the stupid morning and stare at the ceiling, imagining the worst possible outcomes.
Off to the Doctor’s appointment…our urologist told us a lot of what we already knew from the biopsy report, and we discussed the next steps to be taken. The obvious first steps involved finding out whether the cancer was still contained in the prostate itself, or if it had spread. That would involve a cat scan of the abdominal area plus a bone scan. Luckily, they were able to get me an appointment for the CT that afternoon. The bone scan followed a few days later.
The options from here depend upon the results of the scans. If only the prostate is involved, then surgery is an option. Radiation, either through targeted doses from outside the body or from radioactive “seeds” that are implanted in the prostate gland, can be used whether the cancer has spread or not. All of the treatments carry side effects, but that is part of the trade-off.
One of the treatments available is a type of hormone therapy that reduces the testosterone level. Apparently testosterone helps to promote the growth of cancer tissue. One of the side effects of the hormone therapy is hot flashes! Can’t wait! Of course, friends have questioned my testosterone level for years…”Jim was never very good at sports, but he does set a nice table…”
Another side effect of the hormone therapy is a loss of muscle mass. Great! Again, those who know me are aware that I am not exactly a mass of muscle anyway, so even more exercise, including weight training is going to be vital!
So, at this point, we have the biopsy, the CT scan, and the bone scan results. To our eyes, and after looking up the big words on the scan reports, they seem unremarkable. It remained for the Doc to interpret it. This afternoon, he informed us that, as far he could determine, nothing in any of the reports showed that it had spread beyond the prostate!!!
Stay tuned, and please cross your fingers for us!!
NEW CHALLENGE – PART 2!
This is the first follow-up to UNCLE JIM AND AUNT MARY…NEW CHALLENGE! If you have not read it, I urge you to do so…please check your email or Facebook.
To refresh, we were in the process of getting some opinions as to the advancement of my prostate cancer. At our last appointment with the Urologist, he could not see any evidence that it had spread outside of the prostate gland itself. Really good news! There was some concern from the analysis of the radioactive bone scan, because that scan also shows activity brought on by arthritis. Being of incredibly advanced age, and having abused my little body in imaginative ways over the years, I of course have a few spots that showed up. The most notable one was in my lower back, the result of an apparent congenital defect that has led to degeneration of a couple of disks. It was originally noted over 50 years ago, and has given me almost no grief, so we are all pretty sure that the lower back traces shown by the scan are the result of that.
So, we have discussed the possibility of surgery (to remove the prostate) with the Urologist/Surgeon, and we have an appointment on Monday with the Radiation Oncologist to discuss various forms of radiation. We have also, of course, done a lot of reading on the Internet about various possibilities. During all of that reading, we have discovered some interesting stuff:
1) Lung cancer kills more men in America than any other cancer.
2) Prostate cancer is number 2. HOWEVER, (before you start dividing up my stuff…) the 5-year survival rate for lung cancer is 16 to 17 %, while the 5-year survival rate for prostate cancer is around 99%. The problem is that, being guys, we put stuff off. Like with COPD, we blame increasing symptoms on getting older. So, sadly, by the time we are diagnosed, the cancer has spread or the COPD is approaching the advanced stages, and we miss out on the treatments that might save us a great deal of grief.
3) Surgery, given that the cancer has not spread outside of the prostate gland, is considered a cure. After the gland is removed, it is checked to insure that there is no evidence of spreading. The surgery would be performed robotically, using a machine that looks like something out of ‘Star Wars”. If we opt for the surgical approach, it would mean a night or two in the hospital, followed by about 4 weeks of recovery. During the recovery, I would not be able to exercise except for some walking, so I plan to hit the exercise equipment pretty hard prior to the operation, so as to be as strong as I can be for the surgery and the recovery.
4) Radiation comes in a couple of main forms; external beam radiation and the implantation of radioactive “seeds” in the gland itself. I am not too enthusiastic about the external treatments, due to the fact that they occur 5 days a week for 7 to 9 weeks. That is a lot of driving, even to our closest facility, which is about 20 minutes away. It would seriously disrupt what we refer to as our life. The seed approach sounds like the more attractive of the two, given what I know now.
5) Either form of radiation can also call for hormone therapy, either before or during the treatments. The idea is to decrease the production of testosterone, which makes cancer grow faster. Side effects include weight gain, a loss of muscle mass, hot flashes, and an urge to wear dresses. (I’m kidding!! About the dresses.) Again, I would exercise a bunch to combat the weight and loss of muscle.
6) Both radiation and hormone therapy can lead to fatigue and depression. A couple of theories about that. Being diagnosed with something chronic or disturbing can naturally bring on a feeling of depression. Depression, on the other hand, can create a feeling of helplessness, of lack of control, and of fatigue. With cancer, the fatigue and depression can last from diagnosis completely through treatment. Interestingly, neither Mary nor I feel any of that. It could be that, having gone through all of the other stuff, we are accustomed to the value of being positive. Also, after years of preaching the importance of a good attitude to COPD patients, maybe it has just become a huge part of us. I’ll take it!
See what I did there? In discussing my prostate cancer treatment options, I guilted you into realizing the importance of exercise and attitude. (Or tried to…)
We have gotten a lot of responses, good wishes, prayers, and the like from my first report. It has been incredibly gratifying to be called inspirational, to receive the thanks from so many people. Of all the replies, two stand out. One says,
“You cannot know the wide expanse of your work. I am merely a caretaker (MY NOTE…No such thing as merely a caretaker!!) -and wife of 50 years - to a COPD patient who is in the severe stage of the disease. Your efforts, your positive attitude, and your substantial grasp of the issues have supported me for the past three years and through multiple exacerbations.
Because of your insistence to get all the information, I have done due diligence. While my husband resists every effort to help him cope, I continue to support his every effort - because you help me do that.
I am sending you good wishes and many, many prayers for good outcomes with your current struggles and challenges. You really do make a difference. I, for one, NEED you to be there for me! Take care of yourself, Jim, and be strong, Mary.”
The other one said,
“Dear Uncle Jim, you and Mary have been (unknowingly) my bulwark for years. I am so certain that you will beat this new invader I hesitate to even tell you how much I and everyone on EFFORTS cares.”
Thanks to everyone for your comments. They are humbling.
NEW CHALLENGE – PART 3!
This is a continuation of our journey in dealing with my diagnosis of prostate cancer. If you have not read UNCLE JIM & AUNT MARY – A NEW CHALLENGE, and NEW CHALLENGE - PART 2, and have nothing else to occupy your time, please read them. They deal with the first part of our quest to learn about the latest inconvenience that my body has decided to visit upon me.
In all of our writings over the years, we have continually hit upon the obvious things—exercise and attitude and the gathering of knowledge about our disease. We have obviously concentrated on COPD and other lung diseases, but any of these efforts also apply to other disorders, especially chronic diseases. One aspect that we have not discussed to any great degree is the idea of becoming your own best advocate.
“Health advocacy encompasses direct service to the individual or family as well as activities that promote health and access to health care. Advocates support and promote the rights of the patient in the health care arena. Patient-centered care is also one of the goals of health advocacy, in addition to safer medical systems, and greater patient involvement in healthcare delivery and design.” A lot of words, but it basically means that any patient is going to fare better, receive better care, and become the center of focus for the whole health-care process if they have an advocate, someone who is willing to and capable of understanding the needs of the patient. The advocate can be a caregiver, a family member, or a professional.
Would it not be a good idea to become your own best advocate? You, as the patient, are obviously the center of this whole fiasco! It is in your best interest to have someone on your side, someone who knows what you are going through, someone who really, really cares. Why not you? Being your own best advocate does not mean that you have to know everything, or that you are totally responsible for your care. Rather, it means that you have the fortitude to do whatever you are able to do in order to insure that you are getting the attention that you deserve.
That does not mean that you have to get up on your high horse and start demanding stuff! Quite the contrary… You can get a lot more cooperation from your caregivers, from your family and friends, and from your medical professionals with a smile and a bit of patience. There is some truth to the squeaky wheel theory…you just have to know how hard to push. It is a delicate balance between expressing your concern and anxiety on the one hand and becoming a total pain in the…neck on the other.
So, being us, we have chosen to become our own best advocates. We have hollered about knowledge being power for so long that everyone is likely sick of it by now, but we maintain that it is true. The three leading medical causes of death in the United States are heart disease, cancer, and COPD. What do they all have in common? I would argue that each of them are largely preventable or at least treatable, given an early awareness of their existence.
For various reasons, we tend to discover these maladies too late. We feel that we can’t afford the medical tests necessary to highlight them. We don’t want to take the time to undergo the tests. We adapt to our “new normal”, accepting our new-found limitations as the penalty for growing older, for being out of shape. We simply don’t want to know. (Guys are really good at that!)
Well, those of you who know Mary and I will not be surprised to learn that we have long ago taken it upon ourselves to become our own advocates. We hate not knowing what is happening, we hate waiting, and we hate not feeling in control. So, we do whatever we can to prevent those things from happening.
In our present situation, as I have said previously, we have spent a great deal of time in research. We know more than we ever wanted to know about prostate cancer, its symptoms, its manifestations, and its treatment. We have learned that there are a variety of approaches, including surgeries, hormone therapy, and a handful of radiation methods. In addition to the outside beam radiation and the implantation of radioactive seeds, there is targeted radiation in which small nodules are implanted and used to focus the radiation. Also, there is photon radiation, which does not penetrate other tissue as much as does standard radiation. Most of the radiation methods are used in conjunction with the hormone therapy.
So, by using a combination of insistence, repeated phone calls, some humor, a great deal of charm, and not a little whimpering, we managed to schedule two appointments with the urologist/surgeon, one appointment with a radiation oncologist, and a stress test within a space of 4 days! In addition I have a backup appointment with the urology department at the VA in a couple of days. We gained a lot of knowledge during the appointments, including the fact that I am not really a candidate for the radioactive seeds, because of the size of my prostate. They would not be able to implant enough of the seeds to be effective. So, that was out. The targeted radiation, (one of the brand names is “Cyberknife”) might be a possibility, but it would involve treatments several days a week for 7 to 9 weeks. The fact that the nearest Cyberknife type machine is in Phoenix, two hours away, rather takes that out of consideration.
Apparently the only radiation available in Tucson is the outside beam type, which would also involve 5 days a week for two months or so. Again, not an attractive alternative for us, given the time involved and the possibility of damage to other tissues from the radiation.
So, we have decided on surgery. Of the two types available, one is an open technique involving a significant incision, and the other, the one used by the surgeon that we plan to use, is the robotic “de Vinci” method. The machine, which can be viewed on YouTube, features a camera and four operating arms. The physician, sitting at a console, uses his hands to control the operating tips of the robotic arms and operates with the aid of a 3 dimensional view of the inside of the body. The operation leaves 5 small holes in the abdomen, as opposed to the large incision.
My transplant team wants me off of one of my anti-rejection drugs for 3 weeks prior to the surgery, so it will not happen until around the first week of April at the earliest. As I mentioned previously, I will not be able to do any heavy exercise for 4 weeks or so after the operation, so I will be trying to be as strong as I can going in, so that I won’t have so far to catch up later.
So, now we wait. We have to get the results of the stress test, to make sure that there are no cardiac issues. I don’t expect any, but we shall see. The surgeon told me yesterday that I was the healthiest 75 year-old lung transplant recipient that he had ever encountered. I tried not to blush…
Off to the exercise room!
NEW CHALLENGE – PART 4….
Well, it looks like April 13 is the day! The scheduler for the Urologist/Surgeon called this morning with the date and check-in time. As the date arrives, there will be more preparation involved, but for now it is a matter of waiting, getting into the best possible shape, and exercising my kegel muscles. (More about that in a bit….)
As luck would have it, the call from the scheduler came right in the middle of an appointment with the VA Urologist. I had made the appointment a couple of weeks ago, and I saw no reason to cancel it, although we had pretty much made the decision to go with the Phoenix surgery. Nothing wrong with a second opinion. Not to be redundant, but knowledge is very much power. If that is indeed the case, and there is not a doubt in my mind that it is true, then it follows that more knowledge cannot be a bad thing. The VA doc was very gracious about my taking the call, insisted that I do so, as I had explained my whole experience with him.
I love the VA! I know that they have taken a bad rap recently, but they have been very good to me. I hated my time in the service, hated the regimentation, the lack of freedom, the whole somebody of far lesser intelligence telling me what to do thing… I tend to be a little independent, in case no one has noticed. (Unless Mary disagrees, of course…) However, the time that I spent in the Army earned me the right to receive some pretty amazing medical care. Most notable is the fact that they have picked up the cost of each and every one of my numerous transplant medications. Some of them are pretty costly. So, the VA may be slow at times, they may have acquired a bad reputation in recent years, but then they spend their days dealing with grumpy old vets. No offence intended to any grumpy old vets out there, but if the shoe fits…
So, we have done what we can at this point. We have learned a lot about the surgical procedure, the recovery period, and what to expect. We have made arrangements for Wendy, our daughter, to fly down from Boulder, Colorado to be with Mary, and we have reserved a place for them to stay. I expect to be in the hospital at least one night, maybe two, and we may stay in Phoenix an extra night just in case anything doesn’t feel right. I am, after all, dealing with a suppressed immune system because of the antirejection drugs, so it seems prudent to take precautions.
I mentioned Kegel muscles. If you are not interested in the inner workings of the male urinary system, I recommend that you stop reading here, and go watch Judge Judy or something. See you next time…
Still here? Okay, don’t say that you weren’t warned. One of the aftereffects of prostate removal is the possibility of urinary incontinence. The prostate gland helps to hold urine in the bladder. When it is removed, nerves can be damaged which result in loss of bladder control in various degrees. Inconvenient, to be sure, but I consider it to be a trade-off. In most cases, men are able to regain control over time through such things as the strengthening of the kegel muscles. These are muscles that make up what is known as the “pelvic floor”, and can help to control the urine flow. They can be trained through consciously contracting them repeatedly. Whatever it takes. I assured the surgeon that I would present with a kegel muscles capable of lifting a cinder block. Why, in fact, not? If I can do something now that is going to result in a better quality of life later, that is exactly what I am going to do!
So, now you know more about kegel muscles than you ever wanted to hear. Not really sure what you are going to do with that knowledge, but what can it hurt?
So now a lady calls from the Urologist’s office to inform me that the Cardiologist’s office wants me to come in for a full cardiology workup before he will release me for surgery! I tell her that I had gone in for a stress test last week, which is apparently news to her. She has no results from the stress test, nor do I. Her suggestion is to go ahead and make an appointment, to keep everybody happy. Meanwhile, she will check with the Urologist to see what he really wants. However he is in surgery today.
I then call the Cardiologists office to find about the stress test and to see about an appointment. The only person in the world who has the results of the stress test is out until tomorrow. Giving up on that for the moment, I call the Cardiologist’s scheduler to turn myself in for an appointment. She, big surprise, is the only person in the world who can make an appointment for him, and is out until tomorrow.
I call the Urologist’s office and ask to speak to Cassandra. I love Cassandra. She is the only person that I have found in my quest for intelligent life who actually gets crap done! She is on the phone. Finally she gets off the phone and we are disconnected. However, being Cassandra, she calls back. She has no idea about the cardiology workup. She also has no results from the stress test. She will ask the Urologist who is, (remember?) in surgery today. By now, it is 5:30 PM and everyone, presumably including Cassandra, have gone home.
I hereby give up. Until tomorrow.
NEW CHALLENGE – PART 5….
8:00 the next morning, and I am waiting for both the Cardiologist’s and the Urologist’s offices to open. My Bluetooth headset is fully charged, my coffee cup is full, and I have a large cat curled up on my legs. I am ready for the next round.
A couple of calls later, I find that the Cardiologist’s office has their own version of Cassandra! We have each other laughing shortly into the call, and she is obviously determined to find out what the heck is going on! She finds the elusive results of my stress test, and proclaims that, if my heart is any indication, I should live a long, active life! She agrees to fax a copy of the results to me and to my transplant team, who actually ordered it. I agree to in turn fax it to the Urologist’s office, to save her a bit of time. I thank her profusely, hang up, and utter a cry of triumph that scares the cat.
Flushed with victory, I call my transplant team office to see if I can get a copy of the echocardiogram that was performed in December during my four-year transplant checkup. I explain my needs to the receptionist, who seems confused by the entire situation. She does, however, promise to do something. Neither of us is entirely clear on what that might be, but she was very pleasant about it…
Strongly suspecting that I have just become number 871 on her list of things to do, I call back. As luck would have it, I get another receptionist, who asks for my full name and date of birth, immediately finds the copy of my echo, and faxes it to me!
Resisting the urge to run out and buy a lottery ticket, I call Cassandra. She informs me that the stress test is in fact the only document that the Urologist needs to clear me for surgery, and that as soon as I fax the stress test and the echo to her, we will be ready for surgery on the 13th of April! I hang up, get another cup of coffee, apologize to the cat, and try to figure out who I need to call next. Amazingly, I can’t think of anyone! I feel almost disappointed. It has been a long, frustrating, but ultimately fruitful battle, and I have won!!
So what is today’s lesson? Persistence, I guess… We have spoken of exercise, of attitude, and of acting as your own best advocate. The phone battles of the past few days definitely involved attitude and advocacy. I could have easily just waited, relied on someone else to take care of it, to make the arrangements and the appointments and such, and because there are the occasional Cassandras out there, they would have likely been accomplished. However, I am not built that way. Call it control, call it what you will, it is my life with which we are dealing, and no one with the exception of Mary and Wendy is going to care nearly as much.
During each of the seemingly endless phone calls, I was unfailingly pleasant to those from whom I was seeking help. We laughed, we chatted, and I laid on the charm wherever appropriate. I used my “Yes, Ma’am”, and “No, Ma’am”, and I thanked each of them profusely, whether they actually did anything or not. I learned many years ago that it is unwise to upset anyone who is in a position to hurt me.
I will freely admit that I uttered the occasional really bad word during the days of phone calls, but I made sure that those words were heard only by Mary, if she happened by.
And, of course, the cat.
NEW CHALLENGE – PART 6…THE FINALE
The day prior to the robotic surgery, I had to go through the same kind of preparation that must be undertaken for a colonoscopy. Over a period of several hours, I lost everything that I had eaten since college, and considered myself well and truly ready. We were staying at the same place in Phoenix where we stayed for two months after my lung transplant, and Wendy flew in from Colorado. Mary and Wendy were understandably apprehensive due to the fact that I was to undergo full anesthesia, but I just wanted to get it over with and get on with our lives.
The robotic surgery took about four and a half hours in total. I had asked whether I could have a partial block so that I could watch the procedure. Well, I’m curious about stuff! The doctor just smiled at me patiently and said no. He did say that was the first such request he could remember. Having established myself as being even stranger than he had previously thought, they proceeded to wheel me into a rather crowded operating room which was dominated with what seemed to be a massive, multi-armed beast swathed in plastic. I had just a couple of minutes to survey the room and probably make a couple of inane comments before the anesthesiologist hit me with the good stuff and I mentally left the scene.
When I woke up, I was surrounded with Mary, Wendy, and a random group of medical personnel. The surgeon seemed to be pleased when he talked to Mary and Wendy. I attempted to join in the conversation and ask questions, but I was busily hallucinating from the drugs, so I was not much help.
We will not find out for about a week whether the cancer spread outside the prostate gland, but the surgeon was optimistic, based on the visual field from the robot. I ended up with 5 little holes in my tummy, plus a drain tube and of course a catheter. They removed the drain tube before I left the hospital, but the catheter will have to be in for about a week. For those of you who wear supplemental oxygen, or should, the next time you feel embarrassed about wearing a cannula in public, think about me walking around carrying a clear plastic bag with a tube attached. I will leave the rest of the picture to your imagination.
We figured that I would be in the hospital for at least two nights, given my suppressed immune system and all… However, I was apparently doing quite well, as they discharged me the following afternoon. Back to the Phoenix bungalow for a night, called an Uber to take Wendy to the airport, and I drove back to Tucson the next day.
The next week was a long one. For a couple of reasons. One, I was hauling around the catheter hose and the accursed little bag, which is uncomfortable, not to mention limiting. Not my favorite thing. Two, of course, we were waiting for the pathology report to see if the cancer had spread. We were obviously hoping for the best, so that I wouldn’t have to undergo any radiation or further treatment, but for now it's just waiting, some walking, and carrying around my little plastic bag. Thanks so much to everyone for the words of love, encouragement, and prayer. It is actually a bit humbling to realize how many people we have touched over the years with our teaching and speaking and writing. Pretty cool, actually…
Finally, yesterday was the day! We headed for Phoenix once again, to hopefully get rid of the catheter and especially to get the pathologist’s report, the information that could affect us for many months. Nervous time. Then, after getting rid of my little hose and bag, the doctor appeared. He chatted about my diagnosis for what seemed to be a long time, and finally gave us the best possible news!!
The lymph nodes were clear, and there was no evidence whatsoever of cancer outside of the prostate itself! I am free of cancer! Mary and I both took several very deep breaths, and our shoulders gradually came back down from around our ears…
So we are home, no fear of radiation, and just a few weeks of recovery ahead of us. I can’t do much in the way of lifting or strenuous exercise for another three weeks, but I can walk. Several times a day. As much as is comfortable.
Depend on it.
For all intents and purposes, this is the end of my extended little journal of our latest adventure. I hope that, at the least, you found it entertaining. At most, I hope that it helped someone to deal with their situations by learning, by remaining active, by compliance, by adopting an attitude of personal advocacy, of control. Above all else, I hope that each of you can somehow find a positive attitude, an approach to your life and your situation that will help you achieve all of the other aspects that will help you make it through the day.
I don’t really know where positive attitude comes from. Some lucky ones, like my Mary, were born with it. She is a realist, to be sure, but she chooses to look toward the bright side, to find the positive in just about any situation. Over the years, I guess that attitude, those choices, have worn off on me. Let me assure you that it makes the day much more pleasant, and makes life a lot more fun!
Again, thanks so much for your attention, your love, and your prayers! It means everything.
Hugs, Uncle Jim and Aunt Mary