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!

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

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.