Keystone Kops Capers

For a little history, go to:

https://en.wikipedia.org/wiki/Keystone_Cops

If you've been reading what's been going on, I'm sure you understand why I refer to all this as the Keystone Kops.

I've put off writing this in hopes that time would ease my anger, and, in a way, it has, but but when I decided to write this blog, I wrote it with the intent that this would be an honest account of what's been going on, along with my hopes, fears, and frustrations.

I've cried a lot over the past few weeks, my sleep has been fucked up, and I've been really afraid, and it's all been for good reason. Cancer is scary. The only thing more frightening is incompetence. I've dealt with both, and it's taken its toll on me. I look like shit.  Friends have told me that I look sick and tired. (I wonder why?)

When I last posted, I mentioned that the Urologist was going to send paperwork to the GP (the one who adamantly refused to do a PSA test in the first place) for a referral to an Oncologist.  The GP cancelled and rescheduled the appointment with my husband THREE TIMES!!! (Who me? Angry? Understatement!) So finally the day arrived, and I think the doctor purposely made it his last appointment (5:30PM) just to further aggravate me. So, when we arrived, the office was empty of patients. Because my husband was no longer employed, he was on Covered California Insurance (https://en.wikipedia.org/wiki/Covered_California) and when he checked in with the new insurance, we were informed that the GP could not see him, because his insurance wasn't accepted there. 

We've had this doctor for over 4 years. The Receptionist and Medical Assistant know me well, and I saw the shock on their faces when I walked up to the desk, and said in a sharper than normal tone:

"What did you just say?! Are you telling me that my husband can't be seen by the doctor? You are aware that my husband has aggressive prostate cancer, and that it's metastasized to his lymph system, are you not? If my husband fucking dies before he can get to an Oncologist, I will hold you personally responsible!"

They looked a little scared, because they had never seen me that angry before.  I continued:

"This is MY Husband, not someone off the street, and doctor (name redacted) has the information needed, and I don't know how long all the transfer of information will take. Do you really want the responsibility of his death on your hands?"

They looked even more frightened.

"Are you telling me that you won't accept cash for this appointment? How much do you need? This is my husband."  

At this point, tears were running down my face. I was really worked up.  

"Cash is $140" said the Receptionist. I told them we had it, and they escorted us into the exam room. On the way in, I apologized for being so upset, but reminded them that if the situation was with their husband, I'm sure they would react the same way.

Apparently the GP didn't know about the scene I caused in the waiting room, because he came in all smiles. I told him that the Urologist sent him paperwork about the prostate cancer.  The smile disappeared, and he had the nerve to lecture my husband on not getting a PSA test done sooner! He placed all the blame on my husband! I not-so-gently reminded him that I had requested a test well over 2 years ago, and many times thereafter. The GP had his receptionist check to see who would accept the new medical insurance, and sent a referral to a local Oncologist. Attached was this note from the Urologist:

As you can see, I redacted all identifying information. When we went to pay, they reduced the price for the visit from $140 to $80. I thanked them again, and we left.

With that done, we just had to wait another 4 days for my Husband to see his "New" GP.

The "New" GP

So, the appointment with the "New" GP was scheduled for 7:30 AM on a Saturday morning. I noticed when we got there that the cramped waiting room had seating for a dozen people, and we took the last 2 seats. Soon, it was overflowing with at least 20 people, most of them speaking too loudly in various languages and there was a distinct odor of unwashed bodies. I was far more disturbed by the odor and overflow than anything else. Then the noise got to me. I'm hypersensitive to noise, and after 2 hours of waiting, my patience was wearing thin. When he finally got called in, they explained that the doctor set one appointment time for everyone and that is why there was such a long wait.  My husband is hard of hearing, and his sense of smell is shot, so he didn't even notice what had me so disturbed, but when I repeated to him what he was told (louder, because the nurse was practically whispering) he told her that he was leaving and not coming back.

When we got home, he called and requested a new doctor, explaining the conditions at the waiting room of the doctor he was assigned, and explained (again) about his cancer, and the urgent nature of him needing to see a Doctor that could take care of his needs.  He was reassigned a new doctor, and called for an appointment after the weekend was over.

And again, We Waited...

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.

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.

About Me: Who I Am And A Little Backstory

In everyday life, I prefer to be in the background. I live what some might consider to be an alternative lifestyle, but my neighbors have no idea, and I like it that way. I'm pretty sure that at least a few of the people who work in my local grocery store know, because some things are not that easy to hide.

Anyway, I met my current husband in March of 2013, just about 4 months after the death of my mother in December 2012. He was introduced to me by an acquaintance, but I was busy with a friend, and said hello distractedly.  The funny part of all this is that when he first came in the building, I was assisting at the desk, and he caught my attention. Tall, long blonde hair, and a nice butt. Honestly, I barely even took note of his face. It wasn't until the next day when I read something he wrote that I decided to write him, not even realizing he was the same man I was drooling over when he walked in. Our first official date was June 1, 2013, and I wasn't even sure if it would work out at that point because he was a smoker, and I detest cigarette smoke. Still, he managed to win over my heart, and, before long, we were seeing each other daily in spite of the distance (47 miles on LA Freeways).  He proposed in early July, and I refused, but a week later, I proposed, and we were married in the middle of September 2013. He was also a nonsmoker by then.

Naturally, friends and family were surprised at the rapid pace, but it was right for us. There are no regrets even now as I'm writing this. We have been through many hard times, and we have leaned heavily on each other and supported one another, even when it felt like everything was crumbling down on us. Illnesses, injuries, the death of his mother, even my son having a rare form of cancer that nearly killed him more than once, and then losing our home. We stuck together when others might have decided to run away and divorce. I guess it helps that both of us have a stubborn streak that prevents us from giving up or giving in easily. Oh, we have disagreements, and there are times when he goes silent, but there is Love.

So, now here I am, 57 years old, married to a 62 year old man that I Love, and, in fact, I'd feel lost without him. Don't get me wrong, I have others in my life who I Love, and they are important to me, but they aren't my husband, and all this worry makes me sick. Why am I worried? It looks like he has prostate cancer, and if my calculations are right, it's most likely advanced. How did this happen? I'll save that for my next entry.