TODAY (5-20-2021)

Today was the first time we've had a face to face meeting with an Oncologist in over a year. It was a new (to us) Oncologist and he was pleasant and took his time answering our questions. I did a lot of talking because  my husband often forgets things, and well, I was nervous.

The Oncologist reminded us just how serious and aggressive my husband's prostate cancer was (as if WE didn't know!) but then he hit us with the GOOD news: Only one more year of chemo to go! After that, there will be close monitoring, and, ONLY if necessary, chemo.

Now, I know that doesn't sound like much, but add in the BEST NEWS EVER and it all makes sense. One word:

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ 

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ 

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡ ♡

REMISSION!!!!!

That's right! My husband's AGGRESSIVE Advanced Metastatic Prostate Cancer is in REMISSION! I know it doesn't mean cured, but remission is the very best we can ask or hope for, and it really is a miracle. 

The Lost Wife (Who feels less lost by the minute)

https://www.youtube.com/watch?v=mWvxORi2pc0

Today's Oncology Visit

It was a mixed bag, and unfortunately, I'm not feeling very optimistic. It's coming up on the one year mark of dealing with this, and I guess I'm more discouraged than I care to admit. 

Nobody is interested in "Doom and gloom," and I'm just frustrated. Trying to be the best I can is hard today, but my mood is merely a reflection of the results we received.

My husband has a standing lab order for his Vitamin D levels, PSA, and Testosterone.  

Vitamin D is going up. It was too low before, so this is very good news.

Not so good news is that his PSA and testosterone numbers are going back up and they aren't sure why. His PSA at the beginning of the month was 2.6, and now it’s up to 4.7, and his Testosterone was 20, and now it’s up to 24.

There's a good chance they may have to start giving him the Casodex again if it starts going up more. It's discouraging and more than a little scary especially for me. My husband is taking this in stride, because his results have been so much worse, but he knows that I take all this to heart, and some days are more difficult emotionally for me.

His MRSA infection also came back, which means there might be a delay in other treatments until that goes away completely.

The Oncologist gave him a new prescription for a stronger antibiotic. Now we just have to wait and see if it works.

Oh, and we're still waiting on insurance to approve the radiation.

So while we wait, I will grumble for a little while.

Oncologist Appointment Results

I'm making this quick and dirty.

Good/bad news... 

The biopsy results from 2 weeks ago shows that the prostate cancer has metastasized (spread) to the pelvic lymph nodes. I mentioned it in my previous entry.

According to the Oncologist, this was expected, so please don't feel sad. The radiation can now get scheduled.

Numbers:

PSA  ("Normal" is 4, Goal is 0)

Early January: 120 

Early April: 98

Mid June: 4.1

Today: 2.6

Testosterone ("Normal" for a 62 y/o man is 200 Goal is <50)

Early April: 330 (Enviable by most men, bad for prostate cancer, because it feeds on testosterone)

Mid May: 500+ (initial side effect of Lupron even with the Casodex, this was surprising!)

Mid June: 25

Today: 20

Of note: Lupron destroys testosterone in the body, so estrogen takes over. There have been changes to my husband's body, notably, less body hair overall, and more scalp hair. I also noticed breast tissue development, and the Oncologist said it was normal.

For Comparison: The picture on the left was taken just over a year ago, and the one on the right today.

Notice the difference in body hair, chest, and weight.

So now there's more waiting.

It's About Time

Time:  Never enough, too much, wait, wait, wait!

In my last entry, I mentioned that my husband's last biopsy of his lymph glands was inconclusive, so the Oncologist ordered another one, this time deeper in the pelvic cavity, and that we were waiting to get it approved by insurance. We spend lots of time waiting, and it's gotten close to a year since his (and now my) former GP finally sent a referral to a Urologist. The stress lately has not been kind to me, and, as a result, I got sick, but I'm okay now.

Anyway, the new biopsy was done last month (July) on the 26th. We have a followup to discuss the results this upcoming Thursday (the 8th) however, due to my husband falling ill, we wound up seeing his wonderful new GP this past Friday, and he casually mentioned that the biopsy results were in, and offered to tell us. We agreed that we wanted to hear them.

Understand that after all the CT scans and MRI's we knew that the cancer had metastasized to his lymph system, and that the biopsy was merely a way to confirm for insurance purposes and to target the radiation that has been postponed pending the biopsy results.

We were not surprised by the results that there was cancer in the lymph system in the pelvic cavity, but knowing and having the confirmation has brought about a weird sense of relief. It means we go on to combine radiation with the chemo.

It also means that when we go in Thursday, we can face things and make decisions in a more practical and less emotional way. Honestly, I've been mostly "cried out" for the past few months anyway. Yes, I still cry sometimes, but after a while, the tears just don't come anymore. Understand that I worry almost constantly about all this, but I also know that my husband needs me to be strong and assist him with the hard decisions, and his current desire is "fight and fight hard at any cost!" My job is to stand by him and be his bulldog.

So, yes, we are armed with the results, but there is no plan of action until after we meet with the Oncologist on Thursday.

Again, we wait...

More to come.

A Pleasant Surprise

Note To Readers:

I purposely held off on writing this until now, because, well, yesterday was April Fool's Day, and some of what I'm about to share might seem unbelievable. I know that I had a few "jaw drop" moments.

Oncology Visit Report (4-1-19)

This was scheduled with the plan that the brain MRI and full body CT would have been done, and we could discuss results. As I mentioned in my last journal entry (https://alostwifesjourney.blogspot.com/2019/03/last-week-you-ask.html) a week ago, it wasn't happening anytime soon, and, in spite of my daily calls, it hasn't gotten any better.

I've been feeling awfully burdened (https://alostwifesjourney.blogspot.com/2019/03/some-nights-are-like-this.html) by all this. I mean, I'm human, and nothing at all like the "Superwoman" I often portray in public. I frequently find myself grasping for invisible lifelines that just aren't coming, and it's exhausting. I realize I'm frequently exhausted. The insomnia coupled by the constant worry has had an effect on me.  This appointment turned out to be an answer to my prayers (and probably the prayers of others) We were handed a "lifeline" and the both of us are taking it for all it's worth.

The first thing on our personal agenda was getting the Social Security disability papers filled out and signed. We were pleasantly surprised to find out that my Husband is eligible for disabled parking as well. His energy level is so low, and even getting out of bed is hard for him. When the Oncologist told us and offered to do the paperwork, it put a smile of relief on my Husband's face. Really, he rarely complains, but it's been a rapid downhill slide over the past few months.  I see it, and it scares me. 

No, the paperwork wasn't the lifeline, neither was the parking permit.

The next thing on our agenda was to have the Oncologist look at a rather large abcess that mysteriously appeared last week.  He diagnosed it as MRSA, and prescribed a very strong antibiotic.  Unfortunately, combined with my Husband's blood pressure medication, it has a side effect of elevated potassium levels, so he will have to restrict his intake of potassium.  Unfortunately, I learned in recent months what effects elevated potassium has on a person, because it caused a dear friend to wind up in the ICU not that long ago. I will have to be hypervigilant for the next two weeks.

After that, we discussed the blood test results from 2 weeks ago (pre-treatment). This is where it all gets interesting: Apparently, my husband's Vitamin D levels are extremely low.  His result was 11. Normal is at least 30. It adds to the normal fatigue of cancer, adds to depression, and contributes to his pain levels.  It was definitely a lightbulb moment. It was decided that he would take a high dose Vitamin D supplement once a week. Since it's a special order, it will take a day or so for the pharmacy to get it.

Next was Testosterone levels.  My Husband is 62, and most men his age have a level of 200. In other words, decreased testosterone levels are common, and since prostate cancer is related to increased testosterone levels, he was placed on anti-androgen (anti-testosterone) medication.  His level came out as 330. Another AHA! moment. Most men his age would be envious. Except, that's why his cancer is so aggressive.

Finally, (and this was the biggest "jaw drop" moment, and much-needed lifeline) we were given the PSA levels. In January, they were 120. As mentioned before, normal is 4, and since my husband had received NO TREATMENT until his last appointment, there was a concern that the levels would be drastically higher, and the higher the levels, the less "time" there is for him to get life-saving treatments. "Time" is our only hope right now. The lack of "time" is my obsession, my worry, the thing that keeps me up at night, the reason for my tears and frequent feelings of hopelessness. He saved the best for last.  My Husband's PSA level was 98!  Yes!!! 98! 

My question and my Husband's question (and probably yours too) was How???!!! The human body is amazing, and PSA levels will fluctuate some. That's what happened in this case, and it buys us a little more time. I'll take it!

Future Plans

We were told to not worry about changing the MRI and CT scan to a sooner date, the next Oncology appointment is Tax Day (4-15) and the results will be in by then. We understand that just because the PSA levels have lowered it doesn't guarantee that there hasn't been a bigger spread of the cancer, so we're still hoping for the best, but we're also working on a bucket list.

The Casodex (anti-androgen medication) will continue, but the next visit will mark the beginning of the Lupron injections, which will eventually replace the Casodex completely.

We still have so much to do, but the fact that the Oncologist is being transparent with us, and explains everything, it makes this much easier for us. 

Maybe we can breathe, and for the first time in a while, the waiting isn't quite as scary.

https://www.youtube.com/watch?v=B3blT1IRafU

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.

Forward and Onward!

Cancer sucks. I think we can all agree with that.

My Husband's pelvic MRI/CT scan was done yesterday. It was stressful for the both of us, and I was tempted to stay home because I was so tired, but I pushed myself, and went out. The bone scan is scheduled for Friday, and requires 2 separate appointments. The first one is 11:30, the next one is at 4PM. I have decided that if I am half as tired as I was yesterday, I will not be doing a repeat performance of going out.  I can't take adequate care of him if I keep pushing myself, so I will do what I can when I can.

Add to this that his last day at work was Thursday night. It has nothing to do with the cancer. His employer started laying off non-essential personnel in December, and because he was essential he was kept.  They cut off his medical coverage effective January 31st, but didn't notify him until January 28th. This past Monday, he applied for medical coverage under Covered California, and when he got to work on Monday night, he was informed that the doors were closing effective Friday (yesterday) I'm sure at least one person is wondering why he didn't look for another job seeing the writing on the wall, but think about it:  What employer is going to take an employee with a cancer diagnosis, especially one with an indeterminate ability to work?  Not many.

I worry about all this, and I don't think anyone would blame me. This isn't a pity party, it's just what is going on. But I do have a favor to ask of you: If you're a male over 50, insist on getting a PSA test done. It's a simple blood test, and it can save your life. If you know a male who is over 50, encourage him to get tested.  

One last favor, Love, prayers, positive vibes, etc; is greatly appreciated, but there's no quick fix for this nightmare.  I promise that if I need something, I will ask for it. If you don't mind listening to me worry out loud, let me know, but remember, the key word is listen.  

Thank you for reading this, and thank you in advance for getting that PSA test for yourself or a loved one.

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.