Some Nights Are Like This

It's well after 3AM on a Sunday, and I can't sleep. I feel like I have the weight of the world on my shoulders. I'm feeling more worried than usual, and I'm not sure why. Uneasiness will often creep in at the strangest times.  I get it. How could I not be worried?  My Husband has cancer, and even though I work hard to not let that fact color my life and thoughts, sometimes it does. 

Is he dying? Well, we're all dying. Some faster than others. Death is an unpredictable thing, but we're all going to do it (die) sooner or later.  I remember being about 12 and waking up in the middle of the night crying, and my mother came in my room when she heard me sobbing.  "I don't want to die!" I said. She reassured me that I had a long life ahead of me and to not worry about it. I've been close to death a few times since then, but medical science is amazing.  I don't worry much about my death these days, but I still do worry about death, especially as I watch my friends in their 50's and 60's die of all sorts of things.

So, yeah, I worry, and sometimes the worry keeps me up at night, as if my staying awake at night is going to help it.  (Spoiler Alert: It's not!) He saw me get out of bed, and get dressed to come into the kitchen where the computer is.  He asked my why, and I told him I couldn't sleep. What I didn't say is how worried I am. Some would say needlessly, but I think I have just cause. Hey! It's my life, and my nightmare, and I reserve the right to feel how I do. It doesn't have to make sense to anyone else. 

Just over 2 weeks ago, our Best Man died. His wife was my Maid of Honor.  They got married a little over 2 years ago. He was 62, same age as my husband. She's 5 years younger than me (52) and yes, he had a chronic condition, but he wasn't particularly ill at that moment. She's lost, easily as lost as I would be if my Husband died, maybe moreso. I don't know how she feels. I've even said as much to her, and I can only imagine her grief and despair. I have  what I call "anticipatory grief and despair." Mourning a loss before it comes. 

I had it when my oldest sister was dying. She was very sick for a few years, and I was her caregiver. I would often cry alone at night, knowing that one day (maybe today?) would be her last, and even with all my mental preparation, the day she died, it caught me by surprise. I told her friend "I thought she had a few more days" when explaining why she didn't need to come for her planned visit in a few days.

I don't know if writing this helps me or not, but it clears my head a little. Speaking of writing, I carried on 4 separate text conversations on Saturday afternoon.  It might not seen unusual to anyone reading this, until you realize just how much I hate texting. I detest it. Yet, I did it, because it was practical at the moment. None of them were particularly bright and pleasant, mostly commiserating about life and death, and bills, but I wrote a few gems, and I would be remiss if I didn't share what I wrote.

"You are living my worst nightmare, and knowing that is so very hard. I just want to give you what I think I would want. I have deep feels for you."

"Some people won't know what to say or how to act around you."

"You're just too damn young to have to go through all this."

"It's not like a divorce, where you know he's around someplace and you're trying things on your own, it's more like he skipped town and left you with nothing."

"I'm not trying to make light of this at all."

"I told her she is living my worst nightmare."

"I hope I can be there for you."

"Not much day to day stuff. Just the overall insanity."

"Some people are afraid it's contagious, so they just avoid discussing things with me. My friend gets the same thing."

"I don't mean literally contagious, I mean that they just don't know how to act, so they don't do much of anything. I don't blame them. It's scary. Besides, I know you're there if I really need you."

"You go through enough as it is, and I will admit that I've been pushing people away too. I'm not sad all the time like I was, but I still don't want people to see me like this."

"Cancer is just scary, especially when it can't be treated by surgery, and it's spread to parts unknown."

"How is he coming along?"

"Oh gawd, the hospital bills! Let's not even get started talking about that.. (squinting face) " 

"Pride? What's pride? I gave up on that one a long time ago. When you get old like me, you kind of give up on that one. It's easier to just relax."

Okay, now I feel better. Maybe I'll try to sleep.

URGENT???!!! Really???!!!

Something Stinks Here!

In my last journal entry (https://alostwifesjourney.blogspot.com/2019/03/last-week-you-ask.html ) I mentioned that the Oncologist ordered a full body CT scan and a brain MRI on my Husband, to be done on an URGENT basis. What I didn't mention was that the Oncologist said it should be approved immediately by the insurance, and done within a week at the longest, and he set an appointment to discuss the results on Monday, April 1st.

I have been in contact with his Secretary daily to find out whether or not the insurance had approved it yet, so imagine my surprise waking up Tuesday (yesterday) morning, and finding out that the URGENT CT scan and MRI was approved, and that the Radiology department scheduled it for April 9th! My Only thought was:

URGENT???!!! Really???!!! BULLSHIT!!!

Shortly after getting that information from my Husband, the Oncologist's Secretary called me to let me know it had been approved. When I told her when it was scheduled, she was speechless! My Husband decided to keep the appointment so the Oncologist can fill out paperwork for Social Security, because it has a due date, but this delay in testing is adding to my stress levels. I mean, yes, I realize that I'm the only one that it matters to besides my Husband (and presumably, the Oncologist), but still... Is this how bad it's gotten, that URGENT means 3 weeks and one day (22 days) after being ordered? I'm really lost on this one (as if I wasn't already lost!)

I don't know if the Oncologist can get it done sooner, but I'm hoping he can do something, because I don't think my heart can take the pressure.

This wait is BULLSHIT!

My "love" song for the insurance bureaucrats.

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

Last Week, You Ask?

Making The Struggle Worth The Hassle...

I'm not made for emotional pain and heartache. It destroys me to the core. The situation with my Husband's prostate cancer has all but destroyed me in so many ways, yet I still come out fighting. Fighting for him, because when it all comes down to the basics, he is MY Husband. MINE!!! and there isn't a single person on earth who will feel his loss as much as me, or even the same way that I would. Keeping him alive and feeling well is my number one priority. I might destroy myself in the process, but as long as he is alive and feeling well, I win. I would gladly sacrifice my life for him, and these aren't just words on a page or a computer document. I mean it, and unless you've seen me, the whole me, you have no idea just how strongly I feel that.

Now, before I go off on a tangent, One of the final things the original GP did was refer my Husband to an Oncologist. This wasn't just an Oncologist, but one of the best and highest rated in the area, but we didn't know that. All we knew was that this Oncologist was local, and he had a funny name. The appointment was on Monday last week (3-18), and after all the stress, we didn't have very high hopes. The pile of paperwork they handed to my Husband was more than he's ever filled out before. When he was called in, we went into a nice exam room and waited. My emotions have been all over the place, and my husband has been guarded in showing his since the last breakdown in tears over a month ago, and this Oncologist with the funny name put us both at ease, and he listened. Being heard is the one thing that was lacking with our original GP, and I've had it with false reassurances. I want the truth, my Husband wants the truth, and both of us want to do whatever we can so my Husband lives as long as possible, and stays feeling well.

The Bad News:

I'm not a fool. I spent years caring for people who were close to death, and I've seen more than my share of people dying, so when the Oncologist said that if my husband went untreated, he could expect to live "maybe a year." I wasn't surprised. I kind of expected it. After all, my Husband had advanced aggressive metastatic prostate cancer that is in his lymph system.

The Good News:

The Oncologist said that the first line of defense was prescribing an anti-androgen medication that would reduce the testosterone in my Husband's body, because prostate cancer feeds on testosterone. Casodex taken once a day decreases testosterone production.

The Treatment Plan:

According to the Oncologist, Casodex will often stop the prostate cancer in its tracks. Lupron injections will be used as well, but sometimes Lupron will actually increase the testosterone levels at first, which is why they start with Casodex. Another side effect is that his hair on his head might even grow! (yummy long hair!) That made me smile, because I love my Husband's long hair, and I was afraid it might fall out. Apparently not with the starting treatments.

Tests Ordered:

1. Blood tests for PSA and Testosterone as a start, because there's a good chance that those have both increased, and the goal is to get the PSA to 0 (zero) This will be done on a regular basis.

2. Full body CT scan to find out how much the cancer has metastasized. Ordered as URGENT but we're still waiting on insurance to approve the test.

3. Brain MRI to determine if the cancer has metastasized to the brain. Ordered as URGENT but we're still waiting on insurance to approve the test.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The NEW GP:

Strangely enough, my Husband's new GP also has a funny last name, and when I tell people they laugh, because one is the opposite of the other.

Negative Things:

Parking is difficult to find. We also had to wait in the waiting room for about an hour, and then another hour in the exam room.

Positive Things:

When the doctor came in, he was thorough. In fact, he spent over an hour talking and asking important questions, including about the prostate cancer. He ordered a full panel of blood tests for my husband including blood sugar, A1C, liver function and kidney function, plus a few others I can't remember. He was definitely worth the wait.

How We Feel:

We finally feel like our concerns are being taken seriously. We're feeling much more positive and good because both the Oncologist and GP are actively listening and involved, and not leaving us in the dark. Yes, this is an uphill battle, and I've been under extreme stress, and it has affected my general health, but I know it will get better. My husband is slowly starting to talk about things, and I think that our relationship will only improve. No longer feeling helpless, I'm speaking up, and (finally!) my husband is too. We also jointly decided that appointments are to be made in the early afternoon.

Still, we wait, but no longer passively.

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.

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