What I'm Doing

Trying To Turn An Anvil Into A Grain of Sand

I'm trying, but failing miserably, so please turn on the following symphony and listen to it as you read the following:

https://www.youtube.com/watch?v=uFZoaTCrggQ

If you've been reading long enough, you know that I begged our family doctor to do a PSA test on my husband over 2 years ago to no avail. By the time we got the results from the Urologist a month ago (1-25) that my husband had aggressive prostate cancer, it wasn't a surprise. 

I suspected, and I think my husband suspected, that it wasn't just the prostate. With a PSA of 120 (Normal is 4!!!), and a gleason scale of 9 (on a range of 1-10, with 10 being the worst) the likelihood of it being in just the prostate was very slim, but one can hope and pray, and that's what we and others did.

There was a pelvic CT/MRI on 2-8, to see if the cancer has metastasized to the lymph system, followed by a bone scan on 2-15 to see if it had spread to the bones. I was allowed to watch the bone scan, and was relieved to see no "hot spots." {picture} (https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=zm6038) Cancer in the bones is almost always a quick and dirty death sentence. Still, there was the pelvic CT/MRI that I didn't watch, and that was a concern for me.

We arrived at the Urologist's office on Friday, and instead of the usual large office with all the surgical equipment, we were ushered into a small room with a cute painting on the wall. Here it is:

Yes, they're all eating donuts! Oh, and my husband is smiling in that picture. 

So, we waited, not very long, either, and before the Urologist could say anything, I asked a few questions, because, honestly, I knew he told me, but it's all been so overwhelming that it never registered. It's funny how nice people are when they realize you're dying. He was very soft and patient with me,  so I knew he had something unpleasant to say. Why else would he put us in such a bright cheerful room?

He started out with the "good" news but didn't call it good news (those are my words), there were no "hot spots" on the bone scan, (which I already knew) so the cancer hadn't spread to the bones, and I waited, dreading the next one.  Then he said, "Unfortunately, the cancer has spread into your lymph system." My husband just sat there as tears started to roll down my face. I cried silently, as the Urologist said he would send the results to our PCP, who would refer my husband to an Oncologist and a Radiation Therapy Doctor.  My Husband got up and handed me a tissue, and told me "Don't cry honey." I don't think he realized how serious it was at the time. I thanked the Urologist for being so kind, and we left. 

Once we were outside, I started to cry again, still silently, and I asked him if he knew why I was crying. Then I told him that he was just given a death sentence with 6 months to maybe 2 years to live. He didn't say anything, but went on like everything was okay. It was 9:30 when we left and headed home, and I felt like I had gone through a full day. Since I was so upset, my husband insisted (as did my Friend) that I go and spend the weekend with my Friend. Who was I to object? When we got home, I went down for a much-needed nap. Just as I was about to get up around 1, my Husband came in the room, got into bed, and holding me, began to cry. Loudly.  The reality finally hit him.  The last time he cried prior to that was 3 years ago, about a month after the death of his Mother. I just held him and reassured him that I would keep my promise and take care of him. 

I've done quite a bit of crying since then, including a few times while writing this, but I feel I have good reason. I decided to wait until today to write this because it was just too fresh on Friday.  

I have a huge mental list of things I need to do, things he needs to do, and meetings with various family and Family members. 

And, as always... we wait.

Results

are in.

Nothing good, unfortunately, and I'm just not feeling up to giving details. I'm too angry and sad. My Husband is sending me away for the weekend.

Oh, and (of course) more waiting.

By This Morning

It will be one week since my Husband came home to stay. Not because he has cancer, but because his employer shut its doors permanently.  

Other than when he's had sick time off or vacations (when we traveled) this is the first time we've been together nearly all day, every day in our nearly 5½ years of marriage. It's alternated  between tender moments, when we hold each other and talk, medical appointments (for both of us) and just the crazy-making experience of no real  quiet time without each other. All this in only a week!

It's far more trying than I imagined. And then I realize that this is "it." Or maybe this is "it."  Then the unanswerable questions and worries dig at me. Sometimes I just don't even have the words for it, and the tears flow when he's asleep and I'm alone with my thoughts. Then I get angry at myself for "being selfish," and realizing that I'm not not selfish, I'm human, and I'm allowed to hurt for me too.

That anger will eat at me. Why don't I have the words?!!! I mean, I've always been able to put words on paper, or even in the computer, but now I'm dumbstruck! I have no answers, or very few answers, and it's not like I even know. Writing is my outlet, but I can't even do that correctly, or so it seems.

I get "cabin fever" and then I'm reluctant to leave because the whole stupid "what if?" goes through my head. I want to be nearby, and I want to run free. I want to take care of me, and I really should, because I'm  getting sick too.  Fortunately, much of it isn't contagious, but it puts me in misery, and I hate how I feel, both physically and mentally.

I avoid discussing much of it with my "inner circle" for fear that they will tire of  my emotional rollercoaster, that unfortunately, nobody is able to stop. I sometimes wish I knew exactly what it is that I need, so I could tell someone, but all I think I need is intangible things, things that nobody could provide.

There isn't a single thing that can be solved. Magic? I still believe in magic, but not the kind I'm wishing for. A good night's sleep, where I wake up feeling well-rested?  Still elusive.

Maybe I just really need more stress-free happy moments with him. Pelvic MRI/CT done a week ago. Bone Scan scheduled in the afternoon, and back to the Urologist at the buttcrack of dawn in a week.  Will we get answers then?  I don't know.  We can only hope.

Let's hope this is a temporary feeling.

https://www.youtube.com/watch?v=kjCCJp9BqpE

Biopsy And Results

Yes, I had planned on writing about the biopsy done on January 7th separately, but I just couldn't, and then all hell broke loose, and things kept happening, one after the other, so here we are.

The Biopsy

We were escorted into the office, and my husband removed his pants and laid on his side. I stood next to him to hold his hand (more for me than him) and before the Urologist came in, the technician gave my husband an injection of antibiotics. The Urologist came in and explained that he would be taking 8 samples from various areas of the prostate using a spring loaded "gun" aided by a sonogram. The sonogram apparatus can best be described as a long thin dildo-looking thing about 1 inch in circumference. It was covered with a condom, and inserted into my husband's rectum. It wasn't uncomfortable for my husband, but that was just the beginning. Once a sonogram was taken, the Urologist said he would be injecting medication to numb the area. Keep in mind that because I was standing, I got to see all the implements used, and when I saw the needle that was being used (long and thick) I got more than a little nervous. I realized the length was so the area could be reached, but he kept withdrawing and injecting in different areas of the prostate. Honestly, the little bit of blood wasn't disturbing. A speck at the most. I was fine, and my husband barely reacted.

Then it was time for the biopsy. There was a slight "click" sound as it took a piece.  The Urologist handed the "gun" containing the sample to the technician, who was to put the sample on a slide. Unfortunately, it only wound up partly on the slide, and I saw it. It could best be described as a thin worm-looking thing, maybe a half inch long.  I started to feel a little sick when I watched the technician struggle to get the sample on the slide. In the meantime, the Urologist took another sample with a "click" and this time, it went on the slide properly. Just as the Urologist was about to take the third sample, I got really lightheaded, so I asked my husband how he was doing, and when he reassured me he was okay, I told him I was going to sit down. I didn't need to pass out watching this. After it was all done, and the sonogram apparatus was removed, and it was covered in blood. Honestly, I was more disturbed by the actual samples than I was by the blood. Later, after he was cleaned up and ready to go, I asked my husband what it was like. He said it felt like an impacted bowel movement going slowly through his intestines. OUCH! His followup appointment was set for January 25th already, so we left.

All Hell Breaking Loose

I was in the early stages of what I later called "the cold from hell." It lasted 3 weeks, and even though it's gone, I'm still coughing. My husband developed gastrointestinal pain, and I wound up taking him to the local ER on Wednesday night. He was diagnosed with gastritis and sent home. By Friday, it had gotten so bad that I took him back, and he was admitted for observation and tests.  He stayed there until Monday afternoon, and received a diagnosis for stomach ulcers. I have very mixed feelings. Yes, it's nice to know what is wrong, but what is wrong isn't exactly minor either.  The good thing is that the new meds prescribed has made his life a little easier. So, while all this has been going on, my husband has watched everyone but the most necessary personnel in his office get laid off. His place of employment is going out of business, so both of us have been waiting for the other shoe to drop. When? Who knows? but this has become yet another reason for me to worry.

A Much-Needed Respite

On MLK day, I was picked up for a planned trip, and I spent Tuesday, Wednesday, and Thursday at the Disneyland Resort. Specifically, Disneyland on Tuesday and Thursday, and California Adventure on Wednesday. I even stayed at Disney's Grand Californian Hotel & Spa on Tuesday and Wednesday night, PLUS I had breakfast at Storyteller's Cafe with ALL the characters on Wednesday morning. I was treated to some wonderful meals throughout my visit, and thanks to early admission and Fastpass, I never spent more than 30 minutes in line for any attraction. I was treated like a Queen, and I am extremely grateful for it. It was a welcome respite planned out over a month ago, and in anticipation of the Urology appointment and subsequent unknowns I would be facing as a result of the appointment. I am so glad I went with my Girlfriend.
 

Results And ???

I arrived home late Thursday night, and I struggled to fall asleep.  When my husband called to wake me, I rushed and was ready to go. He offered to drive, so I relaxed a little on the way. Kind of knowing, and kind of dreading, worrying about possible treatments. Honestly, when the Urologist gently told us it was aggressive prostate cancer, we were both completely unsurprised. I sent the following text to a few close friends and Family:
No surprise. Aggressive prostate cancer. Now they need to do a bone scan and another pelvic MRI.  Apparently, there was cancer in all 8 areas where the biopsy was taken. This is a really slow process.

 I understand it looks rather short, but it was just intended to share information. Right now, it's all I know. I don't have many answers. I wish I did, because I keep getting questions from concerned friends that I can't answer. Well, actually it's not all I know, so I will share the rest:

About 20 years ago, my Husband had a slightly high PSA result.  his doctor at the time did a digital rectal exam, and said it felt fine. No followups were ever done. The Urologist theorized that it was the early stage of prostate cancer, so 20 years of untreated prostate cancer is what we are now facing. That is why it is so aggressive. It's been growing undetected and untreated for 20 years.

THAT was a shock!

The Urologist ordered the other tests (bone scan and another pelvic MRI) to determine if it has metastasized (spread) to the bones or affected the lymph system. We're waiting on referrals for those tests before they can be done.

Really, it's been the stress of "hurry up and wait" that's eating at the both of us.


Oh, and when we got home, we found out that the General Manager at my husband's job resigned. It's hard to watch this, and know that my husband won't have a job much longer.

So now... I have told you everything I know.

AND... 

We wait.

What The Urologist Said

First, an apology. Christmas and the New Year ate up my time, but as you will soon discover, maybe it's better this way.

So, here it was, one week and one day after Thanksgiving, and on the drive to the Urologist, my inner child was upset.  She asked difficult questions and cried as I tried to focus on driving, and let me tell you, driving and crying isn't a good mix.. One inside the Urologist's office, my husband and I tried to make light conversation, but my gut was tied up in knots. My gut is rarely wrong. The whole "What if?" litany of questions went through my head.

It reminded me of when I had to deal with my mother's breast cancer.  We knew something was up, because there were so many tests done to her, so we agreed in advance to "Hope for the best, and Plan for the worst." So when Mom was actually told, we looked at each other, smiled, and scheduled the surgery. A full-on mastectomy, because we didn't want to take our chances.

And here I was, sitting in the Urologists office, and reminding myself to hope for the best, and plan for the worst, but knowing that I saw the invisible sign on the door 'Abandon hope, all ye who enter here.'

I just don't know how doctors do it. He walked in, smiled, said hello, and then went over how MRI's of the prostate are graded. For a brief moment, I relaxed. Then he went on to explain what each "grade" meant.  He looked at my husband, and said "Yours is a grade 5."

Taken from Prostate Cancer Research Institute (https://pcri.org/whats-new-in-prostate-cancer-a-clinical-perspective/):
"The radiologist reading the MRI images of the prostate assigns a score on a 5 point scale to express the probability of high grade, aggressive cancer being present. If the score is 5/5, the possibility of an aggressive tumor is > 90%."

Yes, I bolded the possibility of an aggressive tumor just to show that I'm not overreacting.

We looked at each other and then the Urologist and asked "What's next?" He told us a biopsy had to be scheduled along with a followup in two weeks minimum, and he sent us to the clerk. As we waited, my husband said, "Well, we shouldn't be too surprised. After all, I smoked for 40 years."  My thought was something I won't write here.

Scheduling was a bitch! Between my husband's work schedule, the Urologist going on vacation, and the upcoming holidays, the soonest that a biopsy could be scheduled was January 7th in the late afternoon. That's Monday. 5 weeks ad 3 days after the MRI results were given to us. Did I mention how anxiety provoking that is? Then we wait until the 25th in the morning, which will mean that by the time we have any definite answers we will have been in this hellish limbo for 8 weeks. Honestly, I just want answers so I can plan accordingly.

Do I sound heartless and uncaring? Do I sound selfish? I don't mean to. The truth is I'm afraid. Afraid of being without my husband. Afraid of the decisions that will have to be made.

For now, I wait...

How This Happened AKA: Woulda, Shoulda, Coulda

Unlike many men, my husband sees out Family Doctor on a regular basis. I insist on it. Unfortunately, now that things are where they are, I realize that he listens but doesn't hear. 

However, like many men, my husband would masturbate occasionally, and in January 2017 when he almost casually mentioned that there was blood in his semen, I was (naturally) alarmed. He was going in to see the doctor anyway, so I had him tell the doctor and he listened, proclaimed it a UTI (urinary tract infection) prescribed antibiotics, and ordered a urine test. This was in spite of me requesting a PSA test. (https://www.mayoclinic.org/tests-procedures/psa-test/about/pac-20384731) Our doctor said it was way too expensive an often inconclusive. He didn't even give a digital rectal exam. Naturally I was upset, but I thought maybe the doctor knew what he was talking about.

Over the months, my husband's sex drive went lower, and he blamed his age, but, again, I was concerned. The doctor sided with my husband, and I was the odd one out, so I was ignored. After all, the bleeding was no longer taking place, and he was feeling fine. I've watched people who were "feeling fine" die, only to find out that they were seriously ill and didn't know it. I was accused of being an alarmist, but hey! He's my husband, and I was concerned. I mean, how difficult is a PSA test anyway? The doctor did all sorts of other tests on a routine basis, so why not just do it to shut me up? 

Then, just about a year ago, my husband was up every hour urinating. Prostate! I said, Diabetes! said the doctor. Fine, but would it be so difficult to do a PSA test? I hate it when I speak up and I'm ignored like I'm a stupid child. I was beginning to resent the doctor. In January 2018, my husband actually had a UTI. BUT he also mentioned a decreased semen output. Antibiotics again, and the doctor said my husband might need to see a Urologist. In May 2018, my husband again mentioned the deceased semen output, and that it "looked funny." Again he doctor said my husband might need to see a Urologist. My husband was finally starting to see that maybe my concerns weren't so farfetched. Finally, in September 2018, my husband mentioned abdominal pain when urinating and the decreased semen output. The doctor said UTI, and my husband might need to see a Urologist.

At that moment, The heavens opened and an angelic choir sang as my husband told the doctor "You said that the last three times I mentioned this. Can't you just get me a referral?" Okay, so the heavens didn't open, and there was no angelic choir, but it felt that way to me. Two weeks later, on a Friday morning, my husband and I sat down with the Urologist. My husband works graves, and he had just completed his workweek, and he was more surly than usual, so when the Urologist said he wanted an MRI first and didn't do a a digital rectal exam, or order a PSA test, my husband was grouchy about it. I apologized to the Urologist, explained about the graves, and then the Urologist patiently explained why the MRI was done first. Apparently (DUH!) it shows problems quickly, and then, if necessary, a PSA test is done.

What I didn't notice was that the MRI was labeled ASAP. Before we even got home, the MRI people were calling to make an appointment. The following Friday, the MRI was done. On the following Tuesday, we were told another MRI was necessary because the "doctor needed more views" I missed the red flags. I was just happy that something was being done. We waited for the Urologist to call us, but the call never came. Apparently my husband was told to call a week after the MRI but he didn't hear it (he's hard of hearing), and I didn't remember it. He finally went to see our doctor who had his receptionist look into it. She called me the next day, telling me that my husband could only get those results from the Urologist. 



The soonest we could get an appointment was November 30^th so we waited patiently and carried on as if it was any other November/Thanksgiving. Why worry when you can't do anything about something? I'm getting tired now, (I'm a chronic insomniac, and I need a nap) so I'll write about the Urologist visit next time.