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.

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

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

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...

Forward and Onward!

Cancer sucks. I think we can all agree with that.

My Husband's pelvic MRI/CT scan was done yesterday. It was stressful for the both of us, and I was tempted to stay home because I was so tired, but I pushed myself, and went out. The bone scan is scheduled for Friday, and requires 2 separate appointments. The first one is 11:30, the next one is at 4PM. I have decided that if I am half as tired as I was yesterday, I will not be doing a repeat performance of going out.  I can't take adequate care of him if I keep pushing myself, so I will do what I can when I can.

Add to this that his last day at work was Thursday night. It has nothing to do with the cancer. His employer started laying off non-essential personnel in December, and because he was essential he was kept.  They cut off his medical coverage effective January 31st, but didn't notify him until January 28th. This past Monday, he applied for medical coverage under Covered California, and when he got to work on Monday night, he was informed that the doors were closing effective Friday (yesterday) I'm sure at least one person is wondering why he didn't look for another job seeing the writing on the wall, but think about it:  What employer is going to take an employee with a cancer diagnosis, especially one with an indeterminate ability to work?  Not many.

I worry about all this, and I don't think anyone would blame me. This isn't a pity party, it's just what is going on. But I do have a favor to ask of you: If you're a male over 50, insist on getting a PSA test done. It's a simple blood test, and it can save your life. If you know a male who is over 50, encourage him to get tested.  

One last favor, Love, prayers, positive vibes, etc; is greatly appreciated, but there's no quick fix for this nightmare.  I promise that if I need something, I will ask for it. If you don't mind listening to me worry out loud, let me know, but remember, the key word is listen.  

Thank you for reading this, and thank you in advance for getting that PSA test for yourself or a loved one.

Some Relief

So, yesterday (Monday) after taking me to the Ophthalmologist, my Husband applied for Covered California, and got a much better plan for less than what he had been paying through his employer. It was a nearly 2 hour ordeal, but it's over now.

We also got the referrals and appointments for the Pelvic CT scan (We originally thought it was an MRI) on 2-8 and the bone scan (requires TWO appointments, several hours apart) on the 15th. THEN we can make an appointment to see the Urologist and plan on treatments. (hopefully) 

At least the waiting won't be too long.

In the meantime, tension at home is building up, and I know I could ease some of it (maybe) if I was able to word my feelings in a coherent way, but the words escape me, and I have jumbled thoughts.  Sometimes "I Love you" is just the beginning of what needs to be said.

Oh FUCK Me!!

I tend to have a calm exterior, or at least I think I do, but if you could see through me like a clear glass, you would see millions of tiny bubbles working their way to the surface.

This isn't a pity party. I'm not sad, not one bit. I am angry, angry beyond belief.

As of 12:01AM today, my husband no longer has medical insurance coverage. Fortunately, I wasn't covered under his employer, so I still have reasonably good coverage.

My husband's employer is going out of business, and did a massive layoff of all employees except for those deemed necessary before Christmas. My husband is/was determined to be necessary, so he's still on the payroll, but they are no
 longer providing medical coverage. He's kept the cancer a secret, not that it matters at this point. All this means is more delays for him.

I don't want or need solutions, this is just me venting. Thank you for reading.