Coping with Cancer One Day At A Time

Respecting my family's wishes to keep things private does not always work well, especially when it comes to topics like this.  Thankfully, my Dad has decided to open up and share his journey, a hopeful one. I feel content that instead of writing cryptic posts on Facebook and going to meetings at Hospice for my own self-care strategies, I can express my emotions openly and honestly, like you have come to know me to do on this blog.

I am really appreciative of all the support and I hope to update again soon.

The rock I found at Hospice after my first meeting

From my Dad:  https://tecumsehcityblog.blogspot.com/2019/07/im-baaaaack.html

<Gulp> I truly did not realize that I have not written anything on my website for about three months! I knew it was a little while but, seriously, I did not think it was that long until my daughter mentioned that people were asking about me. I did want to keep things private but realized that this was taking an emotional toll on my daughter's health and so I am coming out to share some news.

Here it comes… What is going on with me these days.

Do you want to know something silly? I really was not sure how many people were actually reading my articles. It did not really matter to me if anyone came to my website at all these days because I was really writing for my own purposes as a release from some of the tension under which I was living after my illness.

I am an old guy after all and who knows how many years more I am supposed to be around here. Until fairly recently, I felt so healthy that I expected it to be a very substantial number. Surprisingly, I really do not feel much different now but my situation changed significantly after one of my normal cancer screenings. 

I have prostate cancer. 

It is an illness that many men have. It appears to be in the early stages and localized, which has a better prognosis than later stages.

It took quite a period of time from the date that I had a biopsy done, and then various other tests to confirm the diagnosis. 

So what's next for me? I am booked to see a radiation oncologist at the Cancer Center on Kildare Avenue here in Windsor in a few days for a consultation. From what I have been told, he is a wonderful man and very knowledgeable in this area. I look forward to meeting him! He will decide what treatment options are best.

There are many forms of radiation available, some which occur every day for a specified amount of time and others that are shorter in duration but more aggressive to treat the cancer cells.  I'm not a doctor, I'm a lawyer, so I will leave it up to the experts to tell me what will be most effective.

The sad part of all of this is that I hope my treatments don't affect my attendance at such an important event coming up. My daughter is getting married in September and I must walk her down the aisle. 

I hope you understand now, dear reader, what caused my Website “invisibility” and I will update again soon.

Wish me luck on my first visit this coming week. 

Patient Advocacy: My Health Matters Too

I have come to the realization that bad things do happen to good people as much as on the contrary, good things happen to those who have caused us harm.

I cannot even really begin to explain my feelings of how devastated it is to be cast away by the people who you put your faith in, especially when it comes to your health. When you are sick or supposedly diagnosed with an illness, you never really expect them to start playing Russian roulette with your life.

Due to incompetence and attitude of "it's not my problem" recent events escalated to the breaking point. My voice needed to be heard and in my heart, I know that if my father was not a lawyer and did not put his law initials beside the very first complaint letter, chances are we would be stored away in a pile that would be sorted at random on a secretary's desk.

Regardless of the outcome now, I really wanted to share with the Chief of Staff of the hospital what I have been going through for the last year and to ask himself the question of what lengths he would go to if this was happening to his child. That point in itself hit home and I could see some empathy. The 6 page letter including documentation of all the events leading up to the meeting showed that something has to be done so other people might not suffer as terribly as I have, physically and especially mentally. I have been diagnosed with PTSD, something I never thought I would be dealing with on top of everything else, but it is now my reality as I re-live these experiences every day. 

The actual details of what went on and whether I have been misdiagnosed was not the main reason for the meeting, and why I am not posting the entire 6 pages.

It's this part below of the letter which is most important to me and so I wanted to share it with everyone:

A doctor of any sort, including a specialist needs to be trained on how to communicate effectively with their patients. If someone is an expert in his/her field but cannot effectively deal properly with a patient, they are doing others more harm than they actually realize and even causing further damage to their own reputation.

I would not want anyone to go through what I have and so I am advocating for major change to happen with all doctors, regardless of their expertise or ranking in the hospital system. I understand how busy everyone is, and the lack of funding and all the other obstacles. However, after going through this ordeal, the time it would take to do some mandatory compassionate training a couple times a year would make a world of difference. Doctors need to be put in the patient's shoes to have a better understanding on how to talk to them. Meetings like this would not have to take place which waste valuable energy and time of all parties involved. More effort and support can be spent on the most important part of what doctors and hospitals should be caring about; the patient's physical and equally important, their emotional wellbeing.
*****

I'd like to say that I have a new specialist now who so far has demonstrated to myself and my family care and compassion, something that I strongly believe that a mandate should always hold true to with no exceptions.

Although right now in my life, I am still going through a lot of unknowns, I have some hope and comforted by the fact that I am at least being treated with R-E-S-P-E-C-T.

Thanks for reading.

Gall Bladder Recovery

If I could get one wish granted on a location where I would never have to go again, it would be the hospital. The moment I walk in, my anxiety level rises. I can see the sheer panic in people's eyes waiting and wondering when they will be called, I can feel the coldness inside of the rooms and I can even hear the snaps of latex gloves being put on by doctors. However, i've had no choice but to face my fears head-on by going there and dealing with issues I have wanted to bury deep within.

Right after my consultation with the surgeon on Thursday morning, I was admitted to Hotel Dieu. We had to wait in emergency for a while to get all the papers filled out and for the nurse to inject what I would say was the most painful spot for an iv. It was placed in a very awkward spot below my wrist bone and then taped up many times so it wouldn’t fall out.

With my parents sitting beside me, I realized at that very moment, I needed to see my brother before I went in. He came to the hospital, and I gave him a hug and he kissed me on the cheek and told me everything would be okay. After having a strained relationship for a while now, I needed to find the strength to just let go and allow him to share in a fragile moment with me that I was going through. By doing this, it helped me to find closure and open up a new spot in my heart for him again.

Soon enough I was taken up to the 6th floor, and that’s when the bad news came... my operation would be delayed until the following day or longer since there were now emergency cases booked in the operating room. I was huddled in the fetal position under blankets being fed with an iv and pain meds scared out of my mind wondering what was next to come. After visiting hours were over, my family left so I could try and get some sleep and told me they would be back early the next morning and would continue to stay with me. Every night from that point on felt like the longest ever. I woke up at least 10 times it seemed to empty my bladder because of all the iv treatments and found it terribly painful to fall asleep. I dreamed of the moment when the lights would go on and I would see some friendly faces and I wouldn’t be surrounded by total darkness and the constant cries of elderly ill patients.

I was NPO (hospital term that I soon learned to mean; nothing by mouth) for the rest of Thursday and then again on Friday because of the uncertainty on when I would be in surgery. Soon enough, breakfast and lunch were gone and I was waiting on word from the surgeon. Friday night rolled around, and I was told that it looks like Saturday is now the surgery date but no exact time arranged yet. I was finally given some food but I could barely eat it because of how much pain meds were in me and just overall weakness. They had a nice array of food for other patients, but all I could manage was a bit of rice and carrots and some juice.

Saturday morning came and again, no food. It looked like I was going to be in for surgery but still no time and so they decided to put me on a liquid diet temporarily. The only thing I could eat was some creamed celery soup which warmed my insides. The surgeon came to visit me once again and told me that today would be the day where I’d be operated on, but unsure of a time so to hang in there.

She wanted to do one more scan where I had to drink at least 700 ml of this concoction of water and medication called Trebrex or something like that. I started at 8, and needed to be finished at 10 am when they’d take me down to see if anything has changed with my gallbladder. I was just about to finish it when everything expelled. I felt awful but the nurse told me that this stuff is vile to drink having an empty stomach for days like I had to, so to just try my best. It had to be done though otherwise they’d start a tube going in through my nose down my throat to make sure it stayed in. I panicked because I didn’t know if I could handle another round especially through that method. Somehow, I drank all the liquid and I was able to get the test done. I was put through a machine where they injected dye into me and said that i'll feel extreme heat for a few minute as they complete the scan. If you’ve ever put your hand in an oven with a mitt to take something out and felt that slight warming, try your entire body baked at the highest temperature.

Saturday night came and after hearing very little throughout the day, the call came from downstairs. I was prepped for surgery and was wheeled down with my parents right behind. They forgot to put me in a gown as I was still in my regular pjamas and to avoid any further delay, I took off my clothes in the bed and threw on that gown. I was determined to not have any more setbacks. The anesthetist was the loveliest man and explained everything before going inside the or. While inside, I saw several huge tv screens and various equipment lined up on the side. The assistants all introduced themselves to me and they were very friendly and reassuring. I don’t know if music was being played or not but for some reason, I was reminded me of the tv show Nip/Tuck. As soon as I said my prayers, my spirit covered me. He was with me a lot during the hospital stay but his presence was abundantly clear at that moment.

My laparoscopic cholecystectomy surgery went well with no complications. I was discharged on Sunday afternoon and prescribed Oxycodone for the pain. I wasn’t told to have a restrictive diet just to take it easy.

So far my observations have been the following:

PAIN: The first few days, I had unbearable pain. I couldn’t walk to even get to the bathroom without constant assistance. Once I took a pain killer, I would be okay temporarily and so we devised a system here that instead of waiting until the pains started, I began to take a pill about every 4 to 6 hours. So that meant some nice 3 and 4 am wakeups for my dad to help me sit up and take the meds. I also found instead of taking it with water, ginger ale was a good choice since I felt less nauseated. The combination seemed in my system to calm the pain right down so I could at least get some rest. Coming off of these has made me feel very nauseated and shaky, also a little disoriented. My entire body aches with a lot of radiating pain in the shoulder and that seems to be a common side effect from the anesthesia wearing off and post-operative pain. One thing that is a must is walking around, even a little bit to get the blood circulation flowing properly and to combat total stiffness in the joints which I felt a lot of and still do. I try to walk a small distance on our upper floor about once an hour, usually with someone beside or behind me, just so I don’t end up falling.

SLEEP: Sleeping is also a challenge since I can only sleep on one side and getting accustomed to being in a hospital bed, it has been and still is extremely painful getting in and out of bed. I find propping up two pillows to sleep helps for the elevation. Right now, I am still very tired and so I nap whenever I need to and usually go to bed early.

DIET: My diet has changed drastically for the time being since eating too much at one time makes me feel bloated and nauseated. It’s really trial and error although personally I didn’t even contemplate any fatty foods to try even though I was told there were no restrictions. I started with mainly liquids, finding unsweetened apple juice helps a lot and I’m enjoying celery soup, with a cup of water substituted for milk usually put in. I’ve had some craisins and raisins, as well as some MultiGrain Cheerios cereal for snacks. Toasted bread is okay so far with a little jam. I’ve added cooked vegetables now too like carrots for a side dish, but find corn and any green salad make me feel queasy. Potatoes are good but with nothing on them and usually mashed. Chicken is also okay but very lean and plain without any type of coating or sauce. One thing that I’ve never liked is apple sauce, I hate mushy food but my mom bought me unsweetened apple sauce to try and I’ve been eating that quite a bit and it’s delicious. I have even started to add in some fresh apple slices and raspberries and blueberries. I’m starting on pasta to see how that works.

PHYSICAL SCARS: Since I was not cut open, I am left with 4 markings, one along my belly button, one higher above and two on the right side. They aren’t grotesque as I thought they’d be, but I don’t like to look at them now. I had to remove the dressing today and it was painful since the tape and gauze were really stuck on. I went into the shower and really soaked up. One thing that is good to do is as you remove the stickiness, lift a bit of your skin with it as you pull because that eases the pain a lot, at least it did for me. The hardest ones were my belly button (it’s still very tender and I put a new bandaid on) and the two on the side.

MENTAL WELLBEING: I can’t speak for anyone else on how they may feel during or after but personally, it’s been a struggle for me. I am mentally exhausted from this experience. I do feel helpless, not being able to bathe myself, get dressed, cook or clean. I do feel strong in some ways for getting through this, but I still cry a lot because I still have November and December tests booked from my urologist that need to be tended to. I also terribly miss intimacy and closeness from my partner, Bill. I’m doing everything I can to stay positive since when I start feeling depressed, my body shuts down faster now that my immunity is lower. I’m trying to take each day as it comes, I also find that breathing deeply helps and listening to music.

So that's the scoop up to this point in time. I would have written earlier but today has been the first day where I could actually sit down at the computer for more than a half hour.

Thanks again for all the love and support. I hope that if anyone is going through a similar situation or needs reassurance, my blog may provide some helpful insight for you.

GI Endoscopy

The upper GI endoscopy is over and I can add that to the list of procedures I've experienced now.

After filling out consent forms in admittance at Met Hospital, my parents and I walked through a maze trying to find the endoscopy area. Even with the arrows on the wall, it was still a challenge because if you don't keep your eyes peeled for every bit of signage, you might walk past or go to a completely different location.

Finally we arrived with plenty of time to spare. There were about 10 chairs all lined up against the wall so I was the meat in this equation, while my mom and dad were the slices of bread. The receptionist was so friendly and I had to fill out another set of forms, mainly patient history and then she asked me the routine questions of when was the last time I ate or drank anything, do I have a fever or cough, etc.

Everyone's head seemed to turn simultaneously with the automatic doors opening each time to the day surgery recovery room. Anytime that someone walked out, you couldn't help but think hmm... did they just have a colonoscopy? or endoscopy? You get nosy after a while but it makes the time go by faster.

When the nurse called my name, I gave my mom a hug and my dad walked up with me to ask if he or my mom could wait inside. They had a rule that due to the other patient's waking up from sedation and even needing further rest, no one else was allowed in that area. So I gave my dad a big hug and I could feel myself just getting really emotional. The nurse took my hand and said that everything would be okay and so I took a deep breath and followed her inside as the doors closed behind us.

After undressing, the nurse helped me into bed and got me a warm blanket since once again it was freezing in there. Before starting an iv, she said "aww...you have such tiny veins!" in which my reply was "ya, they usually use a butterfly needle on me." Unfortunately they didn't have any so she was concerned that the needle may fall out, so 5 rolls of tape later, and there was no way that sucker would get out. A lot of the time, they have no problems with the iv and finding a good vein, but for some reason this nurse did. Unfortunately, I knew after all her probing, I would be looking like a heroin addict later. I think this was the most upbeat staff i've come across in a while though.

Everyone was smiling and working like a well-oiled machine. The only scary part was being thought of as a colonoscopy patient. I got asked that two times and I thought to myself, oh I hope they realize I am wearing pants! That was the main difference, endoscopy patients take everything off just from the waist up, while colonoscopy patients need to remove all clothing. They even had a little diagram on the wall showing two drawings of a person with their pants on and pants off.

Soon enough it was time to wheel me into another room. The specialist was still on lunch so I was just going to be prepped for the scope until he came back. I didn't have my glasses on and I was dozy from the meds now in me, so the room looked a little blurry. The assistant was really comforting and said I looked frightened so she went to get me another warm blanket which stopped me from shivering and then proceeded to tell me exactly what was going to happen in a few minutes.

So first she took my blood pressure and attached me to a heart monitor. After that, she numbed my mouth with this terribly bitter anesthetic spray. Not once, but twice just to make sure it was completely numb. Then I got the "aww you have such a little mouth!" Then she wrapped around a mouth guard just to protect my teeth during the procedure. It looked similar to a latex bdsm ball gag, the only difference was that where the ball would be, this one had a full opening and I was biting down on plastic. Then the oxygen tubes in my nose, which was really uncomfortable, but I do have to breathe, so that's a good thing. After that, she pulled down the scope (it looked like a long black hose with a camera on the end) and showed me how that would be inserted in me and I would have to swallow a few times to get the scope all the way down.

The procedure itself would take about 10 minutes maybe more depending on what they needed to do, and then I would have about an hour or so in recovery.

After she finished telling me about the procedure, she told me to roll completely onto my left side and would see if the doctor was back from lunch. There was complete silence except for the beep---beep---beep of my heart. I tried to relax as much as possible because I knew if I was tense that could complicate things. The doctor came in and took one look into my eyes and gave my hand a squeeze and said everything would be okay. He then proceeded to tell the assistant "we will definitely be giving her 5" so I was think that meant the level of sedation or something similar. The last thing I saw was the black scope coming down on me and before I realized I needed to say "hey remember I'm wearing pants!" I was out like a light.

I woke up later completely disoriented. I didn’t realize the scope was done and when the nurse saw me open my eyes, she told me it was all over with. Here I thought we were just getting started. I couldn't remember anything, which was probably a blessing. I looked down and realized my jeans were still intact so whew... no wrong procedure done.

I got dressed and the nurse said that everything went well overall and confirmed with myself and parents that we were seeing the doctor on Oct 22nd for full results.

Now I was the patient walking through those big automatic doors and getting a glimpse of the other side...endoscopy or colonoscopy?