It Took Long Enough (1-31-22)

 Remember that pesky growing lymph node, and the biopsy my husband got? We FINALLY got a call last week from the Oncologist. It came out NEGATIVE but they will be "watching" it.

I'd like to announce that I'm getting tired of the delays.

An Unwelcome Christmas Present (12-18-2021)

They say that no news is good news, and I know that my last writing explained that my Husband's aggressive Advanced Metastatic Prostate Cancer was in remission, but again, stage IV, and very aggressive, so I've done my very best to remain in good spirits knowing that nothing is promised, but still...

As part of his treatment (yes, he’s still on chemo) he recently had a PET scan, and the Oncologist called in the late afternoon this past Thursday (12-16) and told him that one of his lymph nodes is growing. It’s currently over 3cm, so he goes in next week for another biopsy on the 23rd. My Husband isn’t nearly as worried as I am, but I tend to worry much sooner and much more than him anyway, and I’m already thinking he’ll probably get more radiation (UGH!) or maybe heavier chemo.

I haven't mentioned this to our friends because why ruin their Christmas/Holiday Season with more potentially bad news? As it is, Our beloved dog and my Support Animal, Donna, died while we were away visiting his family in November, so I'm working on training a new Pitbull that we named Panda Moe-Neeum that we rescued from the pound. She's 5 years old, and VERY enthusiastic, so much so that we are covered in bruises from her love. 

Anyway, I'll post more as we find out. Please keep us in your thoughts and prayers, and understand that answers are far more important to us than negative results that will only lead to MORE poking, prodding, and testing. 

The (Occasionally) Lost Wife

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.

Does "Absence Make The Heart Grow Fonder"

Or is it "Out of Sight, Out of mind?"

Either way, here I am. My husband's health has been all over the place.  The Lupron injection raised my husband's testosterone to over 500, so he continued on Casodex  until June 20th.

You know how sometimes life just floats along with no surprises and stays quiet, relatively speaking? Well, that had been life at home until mid-June, when all hell broke loose at once.

This blog was intended to talk about my husband's health, and my concerns, so I could stay calm, butso many other things happened too, so here I am, going a little crazy.

Let's stay with my husband first: Between May and June, he had a sonogram and biopsy of his pelvic lymph glands. Those results were inconclusive, so he needs another one.  Approval from insurance takes forever, so we're still waiting.  At his June appointment, we were given some very good news.  His PSA is down to 4.1 (4 is "normal" 0 is target) and his testosterone is down to 25 (50 was target) so apparently, his numbers are good. We just hope they stay that way.

Now me: Have you ever heard the phrase "Lead By Example?" Since June 14th, I've been working on a health project for myself, and it includes taking supplements, taking my blood sugar every morning, and a nutrition chart, including fluid intake. Each chart is for a week, and my blood sugar goal is <145 at least 5 days a week, and I've met that goal,other than the first week, which was rough, but I've never gone over 160. When my husband saw what I was doing, he started doing the same (taking his blood sugar) unfortunately, his numbers have been about 450+ most days, so he was prescribed insulin a few days ago.  We see his doctor later today.  Did I mention that I didn't sleep last night?

It seems like there's a lot of hurry up and wait when it comes to my husband's cancer, and that's why there's been no journal entries.

I nearly forgot! On June 17th, my ex-husband was hit by a car on his way to work. He was riding his bicycle, and the driver didn't stop. He called me to pick him up and I was shocked by all the blood. He was off work until this past Monday (July 1st) Just another part of all hell breaking loose.

Of Note:

Since receiving the Lupron injection, my husband has had a few more good days than before, although he still has sick days more than we would like.  I'm starting to theorize that his out of control diabetes has something to do with it. 

I think I'll go back to bed now.

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.

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...