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