Darn - got my chest tube afterall

Well, things didn't go as I would like. I ended up with a chest tube late yesterday afternoon. Each x-ray showed more collapsing of my lung. It couldn't refill. I don't feel like an elephant is sitting on my chest anymore, but I'm really sore. The tube is close to my port. I can't do anything that uses my left chest muscles without a lot of pain. Serious pain, like being stabbed by a knife. My colon resection didn't hurt this much. Getting it in wasn't so fun, but not as bad as I'd thought. But now I'm a mess. Did you know you use your chest muscles to use the bathroom? I never realized it before. I suppose those with surgeries high up have already figured this one out.

Frankly this sucks. At first all I could do is laugh. But as time goes on, I'm pissed off. especially today at discharge when they told me they'd made me an appointment for a chest x-ray at the hospital Tuesday AM, and that I needed a surgeon appointment that day too. That was my working day. I'm disappointed and really angry. I know I can't plan things out on chemo. But I really thought I could plan them up till then, to be prepared to go at this again. I know how hard chemo is for me now, and I had my plan of attack. Already I did not have the time to prepare that I needed, but I'd made my peace with that, prioritizing. I was proud of myself for not freaking out - for prioritizing and deciding that I could live with my decisions - it was the best I could do.

But now I've lost Friday, Saturday, Sunday, Tuesday, and maybe more. Saturday I was going to finish organizing my room, and cleaning and organizing my bathroom. I spend a lot of time in these areas when I'm on chemo, so I want them orderly, instead of the absolute chaos I started with last time (just having returned from a month in Mexico).

Today was my reward day. My friend gave me free tickets to the Renaissance Festival. I was looking forward to this so much. And today is an absolutely perfect beautiful day for it. It was to be my "No cancer, get away from it all," day. This was my ME day. My selfish, just for me day. Instead it has been a painful, most of the day wasted in the hospital day. Tomorrow was to be the end of my medical appointments, so I could work my but off for my business Tuesday, Wednesday and Thursday, before I head down chemo road again Friday. But now I have to get a chest x-ray Tuesday morning, and then an appointment with the surgeon. I can't even make the appointment until tomorrow, and have no idea what time they'll get me in.

I have 3 appointments tomorrow that I planned on driving myself to. Now I need a driver and haven't found one yet. Appointments at 9:15AM, 11AM, and 2:30PM. Not too many people have a full day of nothing where they can be my chauffer. I have a feeling I'll end up driving and just dealing with the pain. Not a smart thing, but I certainly can't afford a taxi where I live. I don't have an extra $200 laying around for taxis.

If things look good Tuesday, I'll get the chest tube out. I think they'll still do chemo Friday, but I'm not 100% on that either now. If thigs don't look good Tuesday I keep the tube and get more x-rays later. And it is likely the endocrinologist will send me for some other testing too. How in the hell am I supposed to get my business in order? Last week I had medical appointments every single day. The week before I had a few also. So I'm already behind. My oldest daughter is coming home to work for me again the end of the month, but now she told me she booked tickets to California for a week to see a friend, as soon as she comes home. I was counting on her helping out while I went on the Jamaica working trip if I was ok to go. So I don't think I have that to look forward to now either. I'm just screwed from every direction. If I were healthy and stayed caught up, I could take the 4-day trip, and get by with just checking email once or twice per day and putting people off till I returned. But I can't do that if I've already been putting them off for a week or more. I already lost two good sales due to all my medical appointments the last two weeks. I'm going to lose a lot more now. Sales I NEED. I have bill collectors calling and sending notices in the mail. I ALWAYS pay my bills. And right now I can't. It is ruining me. I need to work or or we'll be foreclosed on. I do not have the strength to go through preparing the house for sale right now. I helped build this house. My hard work and sweat went into it. If I have to sell it, so be it. But I have to be physically able to get it ready and to move. That isn't happening on chemo. And I'd have to find somewhere else to live in the same school district. I have no choice with my youngest going back and forth between houses and court ordered to stay in this district. Housing is very expensive here - we have a great district.

I NEED motivation in my life. I am a work hard/play hard person. I can do something hard like chemo if I also can get my little "rewards." But my reward of a fun cancer-free day today was already pulled. My hope to go into thing prepared has been pulled. Already I'm going into this with triple the stress, when I thought I was so ready. And no reward anywhere in site, other than just maybe I'll be in the big minority again, and this chemo cocktail will take out the rest of the cancer. But more likely it will not. Even my oncologist who has been 100% positive I would beat this since day 1, told me he has to be realistic with me. Chronic disease. Our goal is now to manage it. Chemo, chemo, chemo. And when things look great I can get little chemo breaks, but will be followed very closely for CEA and scans for the rest of my life. How many scans can one have? How much radiation? On top of the 4PETs, 7CTs, and all the chest x-rays with each port (in, infection, in, infection, PE and more), just since Friday I've already had 10 more, with more on the schedule. This is insanity! This is all within one year!

To top it off, I had no chance at all to blow off any steam. My daughter has been worried about me, so she stayed both nights in the hospital. I explained she really didn't need to do that, but she needed to do it for herself. I realized that, so I let her stay. But this means I am "on" 24/7. I don't get to have a little meltdown if I need it. And I needed it. She wouldn't leave my room ever, unless my husband was there. My father-in-law came to visit when the surgeon came to talk to me and release me. I tried to nicely hint that he should leave, but he kept staying. The surgeon had to ask him to leave - he finally asked how "close is your family?" I don't need my breast hanging out with him in the room. And I really wanted to be able to ask my questions with no distractions. But instead I had my husband packing up my things as fast as he could to get out of there (including my clothes I needed to wear home - I had to dig my clean underwear out from under my dirty slippers, etc.). And I had the three of them arguing politics and complaining about how long it was taking the nurse to come discharge me. I just wanted to scream at them to all go away. But I can't. They were there because they care. My stress level has hit its high point and I need space and a good scream. But I won't have a chance till tomorrow morning when one leaves for school and the other for work.

Someone is trying very hard to break me. And they are getting closer. It sucks. All I asked for was ONE normal week in my life. And not even normal - the week was filled with medical procedures and appointments. I just wanted them to go normal. One week to get prepared for chemo road. And I can't even get that. Nope - I get port #3 with a problem. Every single one of them with a problem. I am now having my own little pity party.

The good thing about this - I'm using up those bad odds, so any of the rest of you getting ports shouldn't have any issues at all!