Thursday, July 25, 2013

SBRT begins today - or does it?

This is not a real beach

I went in for my first SBRT radiation treatment today.

By today I mean this morning.

By this morning, I mean too effing g-d early.

I'd been told that they would do a dry run, and then if all went well, move on to the actual radiation.

Apparently, all didn't go well.   After the first dry run they took me aside and told me there was an issue. The problem seemed to be the fact that I was still breathing. I was just minding my own business, taking in oxygen, the way living people do.  That caused some distressing movement of my liver. Hey, if they wanted me not to breathe for this procedure, they should have waited a year or so, but for now, they have to figure out a way to live with my annoying habit.

They told me that the fiducials were moving up and down and asked me if I was nervous. My truthful answer was no, because for some reason, these procedures never make me nervous.  I find them too interesting, even when done on me, to get scared.  And as you know, I'm too ADD to think ahead to any potential problems.   So my fiducial movement was not caused by fear.

I had herceptin yesterday, which causes a lot of nasal drip as I have described before and my guess is I was probably swallowing and trying to manage that too much. So when I went back to try again, I let whatever was flowing flow, and I also pretended that my liver was pinned to the table and reminded myself to only use my lungs to breathe.  Shallow in, shallow out, no moving the stomach.  Considering they had my midsection pinned down by a giant clamp screw, I'm not sure how I moved it in the first place.

They said it was much better the second time around, but still didn't give me radiation. The dosimetrist has to make adjustments.  Maybe the fact that I've lost weight again also plays a role in that, but I don't know.  I have no clue what they base the radiation dose upon, but whatever it is, I'm glad they are careful, and I now wait until tomorrow.

It has become crystal clear that most people fantasize about lying on a beach as their "happy place."  I have yet to be in a hospital scan room or nuclear imaging center where there weren't scenes of beaches on the ceilings and walls. Usually, a few of the ceiling light tiles have been replaced with photos of the undersides of palm trees, so you can imagine that you are lying on a lounge chair with an umbrella drink, looking up at the trees rather than having radiation injected into your body to track your LVF. Sometimes the walls, too, have scenes of beaches although I've often wondered why since lying on your back, there is no way to see them. There are never photos of a forest, or a desert, or a meadow.  It's always a beach.

I suppose medical professionals (or more likely designers) think that when somebody is sticking needles in your liver and digging around in there, causing exquisite agony, all you need for comfort is to look over and see a photo of the ocean.

For the record?  An injection of dilaudid would be better.

My radiation room is no exception - there is a large photo of a lovely aquamarine sea;  large rocks jutting out from the tranquil water.  It was serene and lovely, until you imagine talking a walk out to that rock to bask in the warm Caribbean waters, when suddenly a hurricane comes up. There you are, stuck on this hard boulder, cold waves battering you, dark clouds above, lightening  flashing through the sky and striking the water, high tide rising around your feet - your shins - your waist - as the rock gets more and more slippery and sharks circle hungrily beneath, and you with no way to get back to the safety and comfort of your radiation machine.

Not that I imagined that.

While I don't know what the actual radiation is like, since it looks and feels invisible I don't expect it'll be much different from the dry run.  I was lying on a table, on that plastic bag made just for me, filled with the rock-hard beads that had conformed to my body, arms over my head holding on to posts, belly exposed as techs pushed and pulled and adjusted.   They found my tats and marked me up with little X's, put the medieval screw type device on my stomach as a reminder not to breathe (ha ha), red lights on the wall flashed, green lasers shone on my belly,  and the machines started up to dance and whirl around me.

The noise started slow and built to a whine, exactly like a jet engine or an LG Direct Drive Washing Machine.

So, tomorrow, for 100% sure,  I go get my liver sterilized. I hope it works as well as my washer, with fewer side effects. Wrinkled clothes are bad enough, I don't need vomit, jaundice and ascites too.

Tuesday, July 23, 2013

Okay, okay, I get it, I'm sick

Thursday night, the phone rang.   It was my sister, saying my 83 year old father was very sick and she wanted to let me know.  He was at home but had been having bloody diarrhea for a week.   She suggested he go to the hospital, but he refused.

I called him.  He answered, but sounded very out of it. Difficult breathing, long pauses between words  - the weakness was leaking through the phone line and I could literally feel it.  I knew this wasn't good.  

He sounded like me the day I went septic from c-diff.

I told him he needed to be hospitalized, and now.  Many of you know that I don't rush to the hospital often, and my doctor has agreed with me. I don't automatically tell people "Go to the ER."   But there are times when you have to go and this was clearly one of them.

He said, "I (deep breath, long pause) am  (deep breath, long pause)  going  (deep breath, long pause) tomorrow  (deep breath, long pause) at  (deep breath, long pause) 10:00 a.m. (Pant pant pant)  I asked him why he was waiting.  He had no good explanation.  "Because I am."   I again told him he needed to go right now; I was not sure he would be alive in the morning, it sounded like he was headed towards shock.  I asked if anybody could take him - I asked if I could call an ambulance.  He was worried about his dog, so I said "Go to to the hospital and I will go up tomorrow and stay with your dog."  I was not going to let it go unless he went, and if he had said no, I was going to call an ambulance anyway.  He resisted.  I know he's afraid of hospitals and doctors, so  I explained what would happen:  they would intake him, give him IV fluids, likely do a CT scan to see what was happening.  He would feel better with the fluids and then be able to be treated.  He would not get better at home.

If he didn't go, he would get septic and die.

He must have been feeling as bad as he sounded, because the stubborn old man agreed; I'd broken down all his objections, and knowing what would happen in the hospital helped, I think.

Now, to backtrack:  I have not been able to go see my father in a year.  He lives three hours away by car, which is the only way to get there.  He lives in the mountains, which means the roads are often closed during the winters and medically, I can't take the chance of getting trapped up there, so summers are the only time I can go.  I believe the last time I saw him was in July of 2012.

I have not been healthy myself after four years of chemo; the ride is long and exhausting and it just takes a lot out of me.  There is one other reason:  my father is an alcoholic. Visiting him means going to bars which I don't like to do, and it means watching him get drunk, and it means meeting his alcoholic friends instead of talking with him.  It seems pointless to go when he is always surrounded by people.

Our relationship has faded.  He has sometimes became nasty on the phone to me when drunk.  After the last time, I finally drew a line:  I told him I loved him but I am at the end of my life, and I can't tolerate any more drunken conversations, especially ones that outline my past faults, which I can do nothing about (even if they were true).   From that moment on, he was only to call me when he was sober.  Because he begins drinking at 9:00 a.m., I would not call him, but would be happy to hear from him at any time after I get up at 10:00 or 11:00.  I told him that calling me sober meant no alcohol on board at all, not the couple of drinks that he thinks is like morning coffee.  I said I hoped I'd hear from him.

I didn't.

It hurt my feelings that he never once considered waiting to have his first drink so that he could call his terminally ill daughter.  But, it also was something, growing up in an alcoholic family (my mother died of alcoholism) I never expected would happen, so was not surprised.  Alcohol has always come first.

There.  The "secret" is out.

But of course, he's my father, I love him and I don't want him dying on his living room floor.   I wanted him to get to the hospital.  Right after our phone conversation, he called his neighbor as promised, and they took him to the ER.  I kept my bargain and went up the next morning.  My husband had to work so I took my older son with me.  After a nice visit with a CHP officer which will probably cost me $400, we arrived at the hospital, where I discovered that on this very frail man  - so frail that his entire upper arm was bruised dark purple from the blood pressure cuff - their method of first line diagnosis was to do an endoscopy and colonoscopy.  I felt a CT scan should be done first to see if they could diagnose him without invasive methods.  I went to the nursing staff, found his nurse and explained my concerns and asked if I could talk to a doctor.

She was immediately defensive and rude. "Are you a nurse?"  I shook my head no.   "So, you aren't a nurse?" implying I had no right to question his treatment.   "No", I said; "I just have been a patient for a long time as I have metastatic breast cancer."  She smirked at me and said she'd give the doctor my message.

Uh oh, she just labeled me a bitch.

The doctor did call and we had a vigorous conversation.  He said he'd been doing his job for 30 years, that he thought this was the best method of diagnosing what was wrong.  I said that my understanding was that they thought he had some ulceration in his colon and that I knew there was a risk of perforation with colonoscopy, and that my dad seemed so fragile and weak that I was concerned about the anesthesia as well as the procedure, and wanted to know why they didn't start with a CT.  He said that the contrast would not be benign and there were risks with that too.  I said that I thought the risk were more with the tests he wanted, but after some back and forth, he convinced me that he was on the right path, so I felt better about their methods.

But then not an hour later, they changed course and decided to do the CT.  I am not sure why as I wasn't in the room when they came to tell us.

What it turned out to be was a colon infection along with symptomatic anemia.  They gave him a blood transfusion, put him on IV flagyl as well as two other antibiotics and treated his alcoholism with valium and IV vitamins and nutrition, which they called a "banana bag".  He was also dangerously low on potassium and severely dehydrated -  his idiot primary care physician had prescribed long-term Lasix for an alcoholic without recommending potassium supplementation.  The GI doctor came in and shook my hand and I apologized, saying I didn't meant to question him but I was concerned.  He said that I should question, and it was good to talk to somebody who knew what they were talking about.  All I have to say about that  is I wish I didn't know what I was talking about.

So, for the next four days, I sat in the hospital, seeing that my dad got the care he needed, that he was put on the pot promptly and not left there, that he got changed and bathed - everybody in the hospital needs an advocate when you can't care for yourself.  I spent time calling around and arranging for 24 hour home CNA care for when he was released, talking to his helpful case manager, Kelly and getting home PT as well, and sending my husband (who came up the next day) out to get portable shower stools and pottys for bedside.   They wanted to release him to an assisted living place but my Dad was adamant that not happen, so it was critical I find 24 hour care.

Like all hospitals in my experience, you get great care and you get terrible care, depending on which nurse you have. Andi, his day nurse for four days, the one who needed me to be a nurse to ask a question,  was lazy and sometimes rude.  She only came into the room once per shift, and trust me, Carson-Tahoe hospital is not a busy hospital compared to the ones I've stayed in. (In my experience, the RN should come in once per hour.) The hospital was silent and empty and nothing like UCSF or even Mercy in Sac, and every time I walked to the desk, they were sitting there chatting.

There was one time when the woman in the next room started screaming "Help, Help!"  The housekeeper was in our room and she said, "Oh the nurses won't pay any attention to that" and they didn't.  We were near the nurses station so it was impossible not to hear, but they seemed to spend a lot of the day gossiping with each other, and why get up from your conversation about the Royal Baby for a patient who is yelling for help?  The housekeeper didn't go see either, she kept mopping.  My husband and I couldn't stand it, and he went to see what was happening.  There was an elderly lady, lying on the floor, having fallen out of bed.  If my husband hadn't intervened and got the nursing staff, she may well still be there yelling "help."   When my husband said "there is a lady on the floor in here"  about six people came running so it's not like they weren't around - they were just doing exactly as housekeeping said:  ignoring patients who yell.  God forbid you don't push the button.

On the other hand, all of the night nurses were amazing, one in particular, whose name I didn't know because I had to leave for the day before I met her.  She spent two hours talking to my dad about his drinking and suggesting that to be successful in recovery that he move to live with one of us, and she even called my sister to make sure that was possible.  (It always has been.)  She told my sister than she didn't usually spend 2 hours with patients but something about my dad made her want to do it.  He can be quite charming.

Jacob, a CNA, was super caring when he came to do my dad's toileting, a frequent job as it always is when somebody has an infected colon.

So, you would think sitting in a hospital room, hunting down aides and making phone calls wouldn't be too physically taxing.   You would be wrong.  My first day, I was raring to go.  By my fourth day, I could hardly walk and no way could I have driven home.  My legs were shaking, my knees barely held my weight and I was simply exhausted.  I felt hollow, liver pain intense, unable to go on.   I wasn't eating right and the one time I went to get some soup, my dad called freaked out about something so I went back.  I felt pressure to get everything accomplished before I gave out and had to go home, which happened Sunday.  Fortunately, my sister decided to come too, so we crossed paths.  My father has 24 hour care now for the next couple of weeks, and my sister is keeping an eye on them to make sure they do a good job, at least for the next few days until she has to go home. Hopefully, he can recover enough to move in with her in the next few weeks. She has a gorgeous house and a nice private bedroom.

It will be a long recovery but with sobriety and understanding that it is a process and not something that happens instantly,  he will certainly make it back to where he had been before this illness.  It took me 3 months to recover from c-diff.  I was sicker than he is now, but also younger.

Why did I go?  My sister has done all the checking in on my father for the past year and I felt it was my time.  My unemployed brother is too selfish and lazy to help, although he lives just an hour further than I do, so we know that was not a possibility.  In all the four days he was in the hospital, my sibling only called once and didn't recognize my voice when I answered the phone - in fact, he aggressively and rudely questioned who I was:  "Who the hell are you?"  I said, "Nobody you know" and put my father on the phone.

The last two weeks, I'd been feeling stronger, feeling good enough to start picking up around the house, organizing things, getting ready for the exhaustion I hear will happen after SBRT.     But doing something simple like sitting in a hospital took it all out of me.  I now have a recovery ahead of me too.

I am not going to be able to do it again.

I now believe.

I'm sick.  I'm really, really sick.  I guess I never really did believe it before, but it is true.  Even if I feel okay, even if at home I feel relatively normal, and start doing normal things -  I can't do what healthy people do.

It's a hard thing to wrap your brain around sometimes,  that any expenditure of energy can wipe you out for days or weeks.  I'm only in my 50s and this is frustrating.  And, of course, it means that my sister has to do everything in regards to my dad.  I feel like a deadbeat.

My doctor said chemo was killing me.  I think he was right.  I can only hope this SBRT gives me a reprieve, and once I heal from that I can heal from chemo at the same time,  and my body will get to do all the things that my brain thinks it should do, for however long it lasts.  But I realize now that permanent damage has been done and I may never be normal again, even if this SBRT gives me another two years.

Let me say, I'm very proud of my father. My mother's death caused a downhill slide as far as his drinking went, and I imagine it is very hard to quit.  Drinking has been a big part of his life; with all his friends in the drinking world, sitting in bars, partying constantly - so the fact that he is determined never to drink again makes me very happy, although I know it will be a struggle.    He has been told, and it is the truth, that any more alcohol will kill him, and he'll die in a hospital, a place he hated.   He is taking that seriously and I hope that it lasts once he starts to feel better and the memory fades.   Taking the steps to recover at 83 is a remarkable step of courage, and I will look forward to many clear-headed conversations with my dad.

Wednesday, July 10, 2013

SBRT Simulation

The day had finally arrived - setup for my SBRT radiation.  (The actual radiation is scheduled from July 25th to August 1st.)  First,  I met with the doctor, who allowed me to ask any questions, and then I signed the forms agreeing to the procedure.  Then a nurse came in and started an IV.  I gowned up, and she took me to yet another CT scanner.

I'll bet I'm in the 20ish range for CTs now.  But who's counting?

I'd been sick a week ago and was unable to get out of bed from Saturday to Wednesday, so I had lost some weight - I was down to 94 pounds.   When they took my weight  I was pleased to see that I had gained a pound back, but not so pleased at this particular CT scanner.  It was the first one I'd ever seen that wasn't padded.  Ordered to lie down, my skinny arse and bones had to lie on bare wood.

Not for long.  Soon, I was swarmed by radiation techs who seemingly came out of nowhere.  They were shoving pillows full of foam beads all around me.  I had to position myself on my back, hands holding these handles above my head while they push and pulled and smooshed the bean bags against me.   They were packing me tight, tugging my clothes and underwear down, pulling my gown open, and taking my shoes off, pushing, pulling and patting until I was finally in the right position.   Then they put this weight on my stomach which is to remind me not to take any deep breaths - shallow breaths from the top of my chest only.   Then they put me in the CT machine and did a scan.  They gave me contrast, and in and out I went, painful frozen shoulder growing numb, trying so hard not to take a deep breath that I almost passed out.

I realized I have gotten in the habit of taking a very deep breath every few minutes - probably due to chronic anemia, and only then did I realize what a powerful habit it was.  So now I have to learn to breathe all over again.

After the scanning, they had me in the position they wanted that would enable them to best go after my tumor, and so they sucked the air out of the beanbags so it would hold the position, exactly like those space bags you get at Bed, Bath and Beyond.   They took photos of me, my arms and my hands so they could recreate it.  Then they put tattoos on me to mark whatever it is they are marking.  These are not interesting tattoos at all, and really, if they are going to stick a needle into ink and jam it into your body, you should at least be allowed to have a little star or something.  But no, you don't get designs, they don't use a tattoo gun, they just dip a needle in ink and slip it under your skin.  The marks are tiny and black and they just look like blackheads, and I'm sure I'll be trying to scrub them off each time I see one..

My appointment for the 25th will either by a dry run or real radiation, depending on how they feel things go.  In attendance at this party will be me, all of the techs I just met, as well as a Physicist, a Dosimetrist, my doctor, nurses, etc.  So it is quite the team designed to keep me safe (and not one you want to stand up).

I feel better about doing this.

Cancer?  Prepare to die.

The doctor and nurse have both told me that my main symptom will be fatigue.  My only question to that is:  how will I be able to tell?