Observing My Husband

An Update of sorts...

Over 3 years ago, I noticed the changes in my husband as his still undiagnosed prostate cancer worked its way deeper into his body and metastasized. I spent over two years arguing with the (former) GP to get a PSA test done on him, and I've spent the past year dealing with the effects of that neglect. Inoperable metastatic prostate cancer. My husband has been receiving chemotherapy since March this year, and his 9 weeks of radiation therapy is scheduled to come to an end on December 17th. The radiation has not been kind to him, and many days he's been too sick to eat. Seeing that come to an end and him possibly feeling better will be a happy occasion indeed!

On the other hand, he will probably be on chemotherapy for the rest of his life, and fortunately, his body has tolerated the effects of it really well. The lack of testosterone and subsequent increase in estrogen and its effects on him physically, mentally, and emotionally have been interesting. While not what I would call stoic, he wasn't one to express his emotions with me. Now there is a lovely spectrum coming from him. His Love is expressed in many ways, as are his fears, desires, and sharing his needs. It really is beautiful to have him share with me. His understanding of what I'm feeling and why I'm feeling that way has increased to a point where not only will he reach for me, but his ability to empathize with me is amazing. He has become my mirror, and with all the pain and confusion there's been, it allows for healing in ways beyond my imagination.

Always comfortable with his masculinity, he has continued to be so, and has embraced the physical effects of the lack of testosterone. He knows that I enjoy the breast growth, and I don't poke at him, remembering what it was like when my breasts started developing. In fact, I'm more likely to ask his permission before handling him. He's undergone so many changes, that I feel it would be selfish for me to force things on him. I like to think of him as the same man I married 6+ years ago but with upgrades.

I remember being told in January that chemotherapy for prostate cancer had a different effect than the more "traditional" chemotherapy, and I'm so glad I didn't convince him to shave off all his lovely hair. His lovely hair and nice butt were the things that initially attracted me to him. He still has that.

I understand that some people wouldn't like the effects of increased estrogen, which include breast growth, shrinkage of the penis and testes, decreased libido, and all the emotional changes as well, but in my opinion, it beats dying of cancer. It's a matter of deciding what is more important in your relationship: having one where your partner has a chance of survival or not having a partner at all.

Is it hard? Well, I have had days where I struggled to not feel sorry for both him and myself, and cried so many tears that I became thirsty from dehydration. I am NOT exaggerating! Then there was our 6 year wedding anniversary weekend in September where he was feeling well enough to travel, and we went to Ventura with me driving, and had a wonderful time doing a few of his "Bucket List" items. He was even looking healthy then, and I have pictures that I will treasure. I'll say that I'm constantly learning how to roll with the punches. We both are.

Having an extended support system of friends and loved ones has made it easier, and I know that most of them are only a call or text away. Having someone who will hold my hand and/or cry with me allows me to focus on the important stuff. The sadness never stays long, and worry? Well life is full of worries, so why allow it to rule me? I can easily come up with a list of friends and family who are having a difficult time right now, so I know we aren't alone, and if I can shine a light or light a candle to help them through the dark, then my job is done. I know they will do the same for me.

The Lost Wife (who is finding her way and no longer waiting)

https://www.youtube.com/watch?v=zzutyUquD5A

So Much To Be Thankful For

Thanksgiving is in 2 days, and it's time to share the happy stuff. Yes there's much to be Thankful for, so let's get started.

In no particular order:

Here it is, TWO whole months since my accident, and I finally started PT today(!) My range of motion hasn't improved much, but here's hoping my PT exercises help. The good thing is that I manage most of my self care really well now, and I'm truly grateful that I have some independence now. I'm back to sleeping in bed with my husband (where I belong) even though getting in and out of bed is painful.

My husband is in his 7th week of radiation, and is scheduled to finish on or around December 17th. We can see our goal up ahead! It is still causing problems (nausea, vomiting, diarrhea, etc;)  but his Oncologist prescribed Lomotil for the diarrhea, so it's not as bad as it was.

We saw his Oncologist on Monday (11-18) last week, and we were happy to find out that his PSA level is down to 1.9! It was 120 in January, so it almost feels like a miracle.  In the meantime, his testosterone level is 18, and considering that it was over 500 not that long ago, we couldn't be happier. Apparently the chemo and radiation is doing what it's supposed to do.

I have also managed to keep my goal of attending the Friday night Dinners with my friends this month. It's nice to not feel so isolated. I even went overnight (Saturday to Sunday) with my friends and had sushi on Saturday night.

Maybe it doesn't seem like much, but I feel like a weight has been lifted off my shoulders. I even heard the words "Possible remission," and it makes me so very happy. From near death to near health, and I'm not as worried as I was.

BEST PART
For the first time in a long time, we're having Thanksgiving Dinner on Thanksgiving. My husband used to work on Thanksgiving, but since he's retired, we can do it like everyone else.

Happy Thanksgiving To ALL!

Another Overdue Update

“Bucket List” Weekend

It was AMAZING! We went up the coast to Ventura, with me driving the rental car. We managed to make it a dining as well as a tourist visit. Highlights included two separate meals at The Busy Bee Cafe (https://www.facebook.com/TheBusyBeeCafeVentura/) and a walking tour through both the Albinger Archaeological Museum (https://www.facebook.com/AlbingerArchaeologicalMuseum/) and the San Buenaventura Mission (https://www.facebook.com/sanbuenaventuramission/) after which, he got tired and walked back to the car (It was a HOT day!) and I walked up the block to visit a few shops, and joined him 30 minutes later. Sunday was a lazy day, but we had reservations to go to Alexanders Champagne Brunch (https://www.facebook.com/pages/Alexanders-Champagne-Brunch/188309961188983) and while he napped and watched football, I did some driving, and just as the sun was starting to set, we went to Father Serra Cross (https://www.facebook.com/pages/Father-Serra-Cross/2310610189158392) and had a lovely view of the ocean. Finally, we had dinner at Wood Ranch (https://www.facebook.com/WoodRanchBBQ/) and went straight to bed. We took our time heading home on Monday, and stopped in Thousand Oaks for a late breakfast, then visited some friends in Toluca Lake on our way home. It was a perfect weekend!

OOPS! OUCH!!!!

I fell and injured my left arm on the evening of September 25th. It isn't/wasn't broken, but the pain has been more than I expected, and I'm still having problems, including limited movement that still necessitates assistance when bathing/washing my hair. At least now I can use the bathroom without assistance, but for the first two weeks, I was at the mercy of my husband and ex-husband. I went nearly a month without seeing my friends for our weekly Friday night Dinner because I couldn't drive or feed myself. Now I'm just waiting on my referral to PT because I'm losing strength and range of motion. In the meantime, I've been sleeping on the couch.

Radioactive!

My husband is finishing up his Fourth  week of Radiation Therapy. Chemotherapy was and still is easy on him, but the radiation isn't as kind. He goes daily, Monday through Friday, and so far, he has suffered through nausea, vomiting, explosive diarrhea, and painful frequent urination that has him wearing an adult diaper (pull-up) due to its unpredictable nature. Imodium and Azo barely has an effect on it. Naturally, this also leaves him with a reduced appetite most days, and other than his radiation or other medical appointments, he rarely leaves the house. His birthday (63) is this upcoming weekend, and we have many activities planned, all things he wants to do, and places he wants to go, so I'm cautiously optimistic about it. He does have the occasional "good" day, so here's hoping it works out.

Family News....

My exceptionally healthy FIL had a routine knee replacement surgery sometime in the middle of October. The surgery went well, but soon thereafter, he had a stroke. He's obviously angry and confused, and says horrible things to his wife of only 3 years. Normally, we would be in MS by now to celebrate my husband's birthday, but with all the health issues going on, it was a no-go this year.

More Positive News…..

My husband's cancer has brought us closer, and I enjoy our time together. Our marriage is happy, and we have better communication skills. We cuddle together on Tuesday afternoons and watch programs that we saved on the DVR. It's really nice. On Saturday nights after football the 3 of us (Husband, ex-husband, and myself) watch more DVR programs together.

My FIL's stroke made it that much easier for us to stay home this year, and considering how weak my husband is, I don't think he could have handled the plane trip there.

In Spite Of It All......

I do have a goal of attending every weekly Friday night Dinner this month, even the one on Black Friday. I don't like being away from my friends so much.

We're not doing much waiting these days. We're in the midst of insanity, but we're getting through it!

Implant?

In the early morning hours of yesterday (Thursday) I dragged my tired self out of bed, showered, and got dressed to take my husband to the the hospital Oncology clinic for his implants. (https://alostwifesjourney.blogspot.com/2019/08/what-what-up-butt-slightly-naughty.html)

Sure, we both grumble about these early morning hours for tests and such, but it's kind of a new "normal" for us. Neither of us really slept well, but, again, new "normal."

For all pre-prep it took, and all the paperwork, the actual procedure was maybe 10 minutes.  In fact, I had just gotten settled when he walked out of the procedure room. This was the first time I wasn't allowed to go in with him, not that I minded.

We left our house at 7:30, and we got home about 9:15. He went straight to bed, and I stayed up to have some breakfast, and then joined him in bed.  When I got up, I did some research on our weekend plans.

Weekend Plans?

Saturday (the 14th) is 6 years to the day that we got married, and if you think about it, it's kind of sad that we're celebrating it by doing an item on our "Bucket List," but that's what we're doing. The plan is that I'll drive and activities we do together will depend on how he's feeling. I've picked out one activity I can do solo, so the plan is to do it when he's resting. I might add more once we get there, but we'll see. Most of the activities planned don't require lots of walking, and it seems that walking (or any physical activity) wears him out quickly, and then he gets (understandably) cranky like a toddler in need of a nap.

We just want to make memories and enjoy each other's company in a relaxed environment. The important thing (what I'm telling myself) is that we don't place expectations on each other. I so want this to be pleasant and fun, but I worry, because, well, that's what wives do when their husband is seriously ill.

We should be home by Tuesday (the17th) at the latest.

Playing our song:

https://www.youtube.com/watch?v=-KT-r2vHeMM

What What! Up The Butt? (slightly naughty)

Sorry to disappoint, but there's no buttsex here.

Even more (slightly) disappointing was that we saw the Charge Nurse in the Radiation clinic. We had met her before, back in early May when we met the Radiation Oncologist for the first time.

It turned out that this was more a case of signing paperwork, and an instructional for his prostate implant. The proper name for the procedure is "Implantation of  Fiducial Markers into Prostate." A fiducial marker is a small 18kt gold pellet about the size and shape of a grain of rice. Yes, they're putting gold up his butt!

Prep includes two (2!) Fleet enemas the morning of the procedure, and they will be doing a rectal ultrasound when they insert the markers. He goes in on the morning of September 12th, and he will have to wait 2-3 weeks before the radiation starts. Radiation will be 5 days a week for 9 weeks. By my estimate, he will be done just before Christmas.

https://www.youtube.com/watch?v=SRCsYJ6MSNA

While I Was Sleeping

My husband and I are mostly on different sleep schedules. It can suck, and we frequently miss out on important things for each other.

Like this morning. I don't know when it happened, but I do know that shortly after my 10:35AM alarm went off, my husband walked into the bedroom, and I sang him a special version of "Good Morning Merry Sunshine" which made him smile, and then he asked me if I saw the new event on my Calendar.

I was still in bed and groggy, so I answered no, so he told me.

The Radiation Oncology Specialist called him and gave him an appointment for tomorrow(!) morning! Naturally, it's at the butt crack of dawn, and we have to leave the house at 8AM, but just the fact they gave him one so soon makes me happy.

So, onward we go, no wait necessary!

https://www.youtube.com/watch?v=5Q9Gou6d9Uo

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.

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.

Doing What's Best For Me

Sometimes The Burden Is Too Heavy

In the early morning hours of Thursday (4-4) it started.  The chest pain and feeling of dread.  I didn't want to wake my husband. I didn't want to make a big deal out of it, but I was frightened. I laid in the dark, afraid to wake him or bother him. After all, he's been going through enough, and I didn't want to bother him even though I was very much afraid.

About an hour after the pain started, he woke up. I knew he would wake up eventually, because he rarely goes than 2 hours at night without needing to pee. The prostate cancer has had that effect on him. When he got up and turned on the light, he knew there was something wrong with me, and he asked.  I told him, then I said I didn't want to call 911. We simply can't afford the extra expense now, so he drove me to a hospital a few blocks away. 

Okay, I admit it, I looked horrible, between my  purple hair that somehow looked greasy, added by the fact that I had mismatched socks, and I wasn't brought in by an ambulance, I was treated like I was a drug addict or alcoholic. My denials fell on deaf ears, and I was pissed, but the chest pain was getting worse, and I was afraid. I was sent to give urine in a bathroom with a "broken sink."  My request to have my blood taken by a butterfly was ignored as well. It started out bad.

Once they got my history (diabetes, high blood pressure, etc.) I was treated less like an addict, and more like someone with a legitimate complaint. I was told to remove my necklace and wedding rings. They did an EKG and chest x-ray, and took more blood plus an IV, and I was sent up to the ICU 3 hours after going into the ER.

Once I was in the ICU, I sent my husband home. Every 2 hours they took more blood, and I was injected with a blood thinner. The diet was restricted fat, sodium and sugar in spite of the fact that my diabetes is under control.  I met with the dietician later in the day who agreed that my blood sugar (115) and A1C (6.5) meant that I could have regular sugar, but no caffeine.  I had an echocardiogram, and there was a stress test scheduled for Friday. 

About 4:30PM, I was told that I was being transferred, and my nurse asked if I requested it.  Why would I do that? I was close to home, and it was convenient for my Husband.  At 5:30, I was told that I was being transferred by the case manager, who apparently knew about it around 2PM, but waited until then to tell me. I was not happy.

The new hospital wasn't bad, but I was put in a room with an elderly lady who had at least 10 visitors at the time, and they were LOUD.  I'm quiet, I live with my Husband and ex-husband and they are quiet.  I'm a private person. This was unacceptable, and I requested a room change, which  fell on deaf ears (laughs) Fortunately, most of them cleared out by 10PM, and I was told that I had to be NPO after midnight. I asked for a snack (not unreasonable, because I barely touched my dinner) and I was told the doctor hadn't approved anything. Finally at 11:45, I was given a sandwich, some juice, and some chocolate pudding. A heart monitor was attached.

When they came in to draw my blood at 6:15 in the morning, the noise started.  Loud Spanish programming that even the earplugs couldn't hide. Loud anything bothers me. Apparently my roommate's daughter spent the night, and didn't even consider that maybe I needed to rest. It took some meditation, but I finally fell back asleep.

The stress test was bad. Chemical injection that made me want to puke, tears rolling down my face, and a general feeling of unease. Then another test, but I fell asleep, so I can't say much. I was returned to my room at 10:30, and given grapes, rice krispies (no milk at my request) and juice. I was told they arranged for me to get an early lunch, but I said it wasn't necessary. At 11:30, my blood sugar was tested and it was 220, completely understandable, but they wanted to give me insulin.  All I could think about was my girlfriend and what happened to her, and that it was utterly stupid to give me insulin, so I yelled at the nurse, and yelled "There's no fucking way you're going to give me insulin!" She backed away, apologized, and let me be.

The attending doctor came and told me I could go home, because it looked like I was having muscle pain, and it wasn't my heart. I got home about 3PM and I've been doing my best to relax.  I did attend a dinner with friends Friday, and did some light grocery shopping, and stopped at the pharmacy on Saturday.

In the meantime, I've been thinking about other things and people who have been adding to my stress level, and while I haven't unfriended anyone, I have "muted" a few on Facebook and other social media. My health is more important than watching the activities of others.

Plans for the week include calling my GP for a followup on Monday, taking my Husband for the full body CT scan and brain MRI on Tuesday, Donna getting groomed Wednesday, Weekly Dinner with Friends on Friday, and a Memorial on Saturday. 

::Takes deep slow breaths::

https://www.youtube.com/watch?v=36uSJlBmYVo

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

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.