And Then The Pandemic (5-20-2021)

 Okay, so the whole COVID-19 Pandemic got to us. By that, I mean everything (and I mean EVERYTHING) came to a standstill, except for my husband's continued chemo after his 9 weeks of daily radiation.  The radiation was grueling, and as I stood and watched, his energy and strength was taken from him. 

A person can only worry and cry so much before the tears just stop flowing from exhaustion, and that's what happened to me. As the Pandemic, and later, Lockdown occurred, we struggled with his inability and unwillingness to go out  of the house, or even downstairs unless he HAD to. He went well over a month without going outdoors, and even as he started feeling a little better, my words of encouragement fell on deaf ears.

In July through August, my two youngest, DIL, and 3 young grandchildren contracted COVID-19.Fortunately, it was a mild case, and they haven't suffered any long lasting effects from it. They also moved from an apartment in Moreno Valley to a house by Lake Perris. That's right! My youngest son and his wife BOUGHT a house! It's really nice, and located at the end of a cul-de-sac in a quiet neighborhood.

Is September, my husband and myself quietly celebrated 7 years of marriage. I'm truly grateful for our time together, even when we make each other crazy.

Thanksgiving was EXTREMELY quiet, and  finding a turkey was quite the adventure! We wound up with a HUGE 22 pounder because all the small ones had been snatched up before I went shopping. Christmas and the New Year soon followed, and before we knew it, vaccinations became available. We has our first one 6 days post-Easter, and our second one the day before Mother's Day. Later in the week, we all went out to celebrate Mother's Day INSIDE a restaurant! It was really weird after being stuck in the house for so long.

Well, that brings us to TODAY and a new entry. But I want to thank everyone for their thoughts, prayers and emails.

The Lost Wife (who is feeling EXTREMELY grateful)

https://www.youtube.com/watch?v=OrCgrZA8xyo

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

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.

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

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.