Random thoughts on family

Oh thank goodness!  I am out of the hospital finally, and I am way too happy. I have to say, for my first ever long hospital stay... it wasn't so bad. I know what to have packed for my next trip, which is a valuable thing. It would be silly of me to think I won't have another hospital stay. Not that I want to be in the hospital, but when your cancer gets to a certain point, hospitals become a part of your life.

Speaking of things that become a part of your life... Can I tell you about my HUGE local family? I have a huge family. So many sisters and brothers who I found later in life. Yep... my family is a lot bigger than blood. Funny how you never realize that the friends you make through the years gradually morph from work colleagues and school associates to best friends and family. Well, while I was in the hospital, my extended family jumped right in to help take care of me. They came to visit to give mom some time off to get some sleep. They watched over me while Michele had to work. They brought me presents, sent me flowers, kept me in juice and helped me change my pj's.  So many little things that meant so much to me, Michele and Mom. How did I get so lucky to have so many amazing people in my life?

It's funny to think how family becomes something hard to define when you are going through something like the Big C. I know that my family has grown and extended. I am so lucky to have so many people who care about me. It amazes me to know how many people worry about me. I stopped by work to pick up some prescriptions and my boss lady was there. While I was talking to her, customers were walking up and hugging me. Not saying anything, just hugging me and walking away. How did these people become so important to my health and well being? When did things change from just a working relationship to something more?

 

The procedure

Yeah... If you were brave and watched that last video... more power to you. I haven't, and you know what?... I am not going to. I won't even let Michele tell me much about what happened.  Instead, I will tell you what I do know.

After all the tests were done and I was placed in my room, I met with the team of 4 doctors who were making the decisions on my behalf. They explain my choices (not many), the possible outcome and the consequences of inaction.  I decide to go through with the chest tube vs. thoracentesis. 

Tuesday begins with the procedure. I am first given 8mg of Dilaudad.  This is something I don't like. Why... I don't know, but my last coherent thought was me telling Michele I hated the way this made me feel, and never wanted to experience this again. When I finally wake up, I am wearing different jammies and I now have a tube coming out of my chest on the right and my port accessed on the left. The tube stays in until it slows down draining. I am informed that I am currently on my 3rd vac seal container. They have already drained over 3 liters of fluid from that cavity.  I am terribly sore, still can't breathe and need many more drugs.

The next day, they leave me to drain. I ask how much longer, and I am told they are going to be doing something (they explained it, but after all the drugs they have done to me... I don't follow). Just relax.

Thursday they come back with that horrible drug, and the next thing I know, I am in the room alone trying to get to the bathroom. They brought me a portable potty.

Friday they bring that bad drug and again... I come to and I am wandering the room, trying to clean things up.

Saturday night, the doctor shows up late and YANKS the tube out.

Sunday, doctors check in on me, I sleep a lot and we discuss me leaving.

Monday I go home. I now have two whole new pages of scripts, a nebulizer coming, four doctors appointments, and I still can't return to work because I have a hole in my chest.

I will elaborate later.

Chest tube insertion on resus.com.au

This is what was about to happen to me. I made Michele watch this, and she said, yep.... that's what they did to you. So... for the curious... and iron clad stomachs...

My first week long hospital stay!

So... July 15th, I go to work. I have tons of work to do, and on the walk to work, I had to stop twice to catch my breathe. Not very usual for me. Once I got to work, I sat in the office, completing paperwork, organizing my to do lists for the day, and generally  trying to ignore the fact that I still could not catch my breathe. Finally, I call my oncologist. They tell me the triage nurse will call my soon. My breathing gets worse. I call my wife. I ask her to come get me. I call my boss and leave a message ( "Hey there!  Having trouble breathing, I am on my way to the emergency room. Don't worry shift is covered.") I make my staff call in a cashier for the next few nights, just in case I have to be out a day or so. I wait for Michele to show up.  ( see how calm and rational I am... Got a ride, made sure to notify my boss, re arranged the schedule to have coverage.)

Michele shows up and I have her stop at my oncologists office. Triage nurse says, emergency room... do not stop... do not pass go...  do not collect 200 dollars. So off to the ER. We get there fairly early, and I expect to go to the check in counter and then sit in the waiting room for hours. But no... We approach the counter and I can not breathe and talk, so obviously, I can't answer the questions over and over again. They slap some oxygen on me, and wheel me straight into Triage, past the lobby full of people looking to get their drug fixes ( believe me... I saw more known drug abusers in that waiting room...).  They moved me in front of everyone waiting and next I was off to get tests (Xray, Echocardiogram, CT scan). Hours pass as I realize I am about to be admitted to the hospital.

Finally, I am moved upstairs. I assumed that this would be a simple one night stay while they arranged for a thoracentesis.  Little did I know that this was to be the first night of my 7 day stay at the hospital.

Prepping is my family's hobby

You know that show on tv about Preppers? Well... even though we own no tv, out house is the home of two (sometimes three) Preppers as they are called. Most of those people on the show are preparing for civil disobedience.  Some are getting ready for all out natural disasters. And some I think just do it because they are kind of crazy.  Then there is my family.

Two years ago (almost), when I was diagnosed, my wife started on this kick about doing the Bug out bags. Makes sense when you think about it. Everyone needs to be prepared in case of floods, tornado's, and random zombie incursions. As I got sicker, the bug out bags became whole survival kits, complete with car kit, food and weapons. My thought is, if it makes her happy, then I am all for it, even when it becomes a giant box on wheels that takes up the whole back of the SUV. See... if zombies attack... we are ready to get to high ground. We have food for months and whats more, I have saved every medicine that I have not had to finish just in case.

But then there is my version of prepping. While she is worried about keeping us alive and well, I am prepping for an easy transition from active, ambulatory life to a not so active, wheelchair and/or bed-bound life.  Those of you who are friends with me on FB know that we have been working on moving our bedroom. Many reasons behind this move, of course. One, it puts us closer to an exit in case of fire or medical emergency. Two, the room was wired by my brother in law when he lived here, so  it is set up to hold more electronic gadgets than NASA. That way, when Hospice is eventually called in, we have places to plug things. Our Current room has hers and hers outlets (one for me, one for her).  Three, we had to get rid of the sleigh bed. It's too high for wheelchair access, and can't be easily accessed from all sides due to the rails.

So, we picked the bed from Ikea. It is accessible from all sides, has storage for medical needs underneath and is pretty, in a basic kind of way.  I already have a recliner I bought from Habitat for Humanity in the room, and this room, unlike the rest of the house, actually has closets!

You know... you buy an old house and you never realize what you take for granted... like closets. Either they wore a lot fewer clothes, or they didn't mind having rooms crowded with furniture to store things in the Twenties.So we also bought new shorter dressers that will fit in the closet. That way, we can hand pants and shirts above the dressers, and put socks and such in the drawers. This frees up space in the room.

Another bonus is more windows. I am excited to think I can lay in bed and look out at the birds and stuff, so i just ordered a bunch of DIY wind chimes and sun catchers to hang on the porch where I can see them from my bed. Next I think I want one of those Tibetan prayer flag things to hang out there. It's pretty and every prayer helps, you know. Plus maybe some Chinese lanterns that light up to hang around the porch. I may end up with the most colorful porch in the neighborhood, but if it makes me happy.... so what!

Trial over... on with the fun

Well... the trial is over for me at least. The first of this month, we went to Chapel hill for the results of the CT scan and yep, that sneaky cancer has grown. So... on to the next thing. I am glad I gave it a shot though. Even if I still am enjoying the liquid poo even two weeks after the last dose was given. At least I gave it a shot, and maybe there will be a future trial that will be better at kicking cancers butt instead of opening the dam in mine.

So, we are on to Kadcyla, otherwise known as TDM-1. I may or may not lose my hair. I may or may not puke. Actually, the list of side effects says so many contradictory things, I think they just threw them all in to cover their bases; like I may have constipation or diarrhea. I am so used to having my bowels doing one or the other, I have forgotten what normal looks like. Watch me have a normal BM and call the doctor in a panic.

But enough about my butt.

The newest complication is fluid around my lungs. Yep... I can't get comfortable in any position because the fluid is on the lung in the side where i have lymphedema, so when I try to lay on that side, my arm screams in pain. Try to lay on the other side, I think I am drowning and I cough like I am dying. My stomach sleeping days are over, as the swelling in my chest makes that painful and forget laying on my back. I have trouble even washing my hair because laying on my back really makes it hard to breathe. So... in the tub, I lay on my bad swollen side and rinse my head the best I can, then roll the other way and get the other side really quick. Tonight I scared the snot out of myself trying to take my meds. You know how sometimes your drink goes down the wrong tube? Try having that happen as you are swallowing an inch long pill. I spit water everywhere, snorted it out my nose and could not stop coughing long enough to catch my breath. Then Michele had to hold me while I tried to calm down, all the while I am still gagging and coughing. I ended up sticking my head in the freezer because I have found that cold air does wonders when you can't breathe.

So the solution to this... sticking a big needle in  my back and drawing out the fluid. Seriously?!?  I mean really!  I hate needles. Two years of chemo, scans and lab work has not changed the fact that I would almost rather drown in  my own fluid than get yet another monster needle stuck in me. Especially since you are awake and sitting up while this happens. But after tonights scare, I plan to go ahead and ask the doctor about it. How long does it take? how long is the recovery? will I have a little fluid sac attached to me again like the lymph fluid drains? How long will I need to be out of work and geez... how the heck would I get to sleep with that thing in me?

Side effects of the trial and why I have been quiet so long

Sorry I haven't written much lately. The trial has had some side effects that I have been dealing with and they have made my sleeping habits change. Two main things have been going on... Pain and poo.

Every day since I started this trial I have had the POO. I spend hours in the bathroom. I have lost 20 pounds. I have found how to manage it so that I only have it at night, but that means I am up, seated on the porcelain throne till about 3am. And I went back to work on June 2nd, so when I am not working or spending quality time with the potty, I have been trying to sleep. I know... not very exciting, but it could be worse.

On June 28th will be my first set of scans since the trial began. I am excited and anxious to see if it has been worth it. I go every Monday to Chapel Hill for treatment. My blood counts have been great, except for my liver counts, which have been not so hot. At one point they reached 4.6 times what they should be. Bad enough that they were unsure whether to continue treatment, but the guidelines said that my numbers had to be 5 times the normal count for the treatment to stop, so I have continued. How this effected me is that my medication had to change. which brings me to the second thing that has kept me from being online... Pain.

I have been in pain for a couple of months. It started from a spot in my back. It felt like a huge lump. It was so large that the doctors thought it was cancer and were making plans to do radiation on it, but the CT scan revealed that it was not cancer, despite the huge size. It was a huge knot in my muscles. I went to a massage therapist who spent an entire hour just trying to work out the area. She succeeded in reducing the knot which was about the size of a tangerine down to something slightly smaller than a golf ball, but it is going to take a while to work it out.

The problem is that due to my mastectomy, I was trying to compensate for the sore muscles in my breast are by using the muscles in my back more. and I was using one side of my back more than they other, which led to a huge muscle spasm. To top it off, I am suffering from Post Mastectomy Pain Syndrome.

We started by treating it with the usual... Tylenol. That was not strong enough, so we added Tramadol. Then we switched to Hydrocodone/Acetaminophen. But that caused my liver to start acting up, so we had to move to ibuprofen and a different pain killer. All the while, I was fretting about taking habit forming drugs.

I have a huge fear of becoming addicted to drugs. I have a Xanax prescription that I don't use because... well... because working in the retail pharmacy business, I see a lot of addicts. I see people who have fits when they can't get their oxycodone, hydrocodone or alprazolam filled because they can't function without it (or rather, they need the drugs to sell). I never want to be one of those people. It took a lot to talk me into taking any pain meds, and I only gave in when Michele told me I cry and whimper in my sleep which keeps her awake. But the fear of addiction still hung over my head. Thank God for my Pharmacist however.

My RPH gave me four RPH Continuing Education articles on pain medications. One explained what the drugs do, how they work and the pain management ladder. One was about the difference between tolerance, dependence and addiction and the other two were about helping cancer patients through the correct ways to manage pain. Thanks to him, I now understand a great deal more about the medications and I am no longer afraid of becoming one of those people we  retail pharmacy workers hate (addicts).

The stigma attached to taking pain medication is hard to overcome. I am lucky. My staff knows how I feel about medications, and have done everything to be supportive and try to make the move from OTC pain management into prescription pain meds something that I can handle without feeling like it is a personal failing on my part. I understand that from now on, this is just another part of cancer and it is one that I will become accustomed to.