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

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.