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Darn - got my chest tube afterall

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

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! ;)

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Thanks for giving us the blow-by-blow. The organized way you approach all this makes me feel, by contrast, as though I am merely stumbling through life. If your antagonist were trying to hurt you, instead of merely being insensate wild cells, I'd be sure you would win. Please keep us posted.

--Greg

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

and admire you still keep certain irony in your words ,l would be there just killing people!.
Any way it looks is not too serious I'm sure, just an unforeseen in the middle of the battle, but you know the important is the war, I'm sure in a few days you will be sending lots of poisson to the f.....bug trough your port device.Don't waste too much energies in this matter ,keep it to beat the f....bug!
Tomorrow l go to the radiologist ,l will let you know what is his opinion about irradiate the nodes, may be the info can be helpful to you too!
Hugs and keep calm ( impossible isn't ? )

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

Kathryn- seems to me you are in the "when it rains it pours" phase...and it sucks.

I totally understand how you feel about wanting a treat - a cnacer free day- not hainv to think about it, worry about it, measure it, manage it....you WILL get there. No way is this gonna break you, you are way too strong and determined.

so breath, try and get a bit of peace and rest so you can get back in the game and fight the fight. We are here with you

((HUGSS))

Peggy

Lovekitties's picture
Lovekitties
Posts: 3333
Joined: Jan 2010

You have really had a time of it haven't you?

As to driving yourself to appointments...probably not the best idea...have you checked with the Cancer Society? They may be able to help or at least refer you to a local group who could get you there at no, or little, cost.

Let's hope that you have gotten all the 'bugs' out of this time down chemo lane and that all from here on out will be smooth sailing.

As for those who are loving you a bit too much, you need to let them know when you need even just an hour to yourself. They will understand. Some times we just have to have our space to scream, cry, or whatever without worrying about how our loved ones will take it.

Best wishes for better days and good results from all this.

Marie who loves kitties

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry to hear this. I hope it will be resolved soon. My husband + I run a business, + I know how hard it is to fit work in around chemo + other appointments. I also understand about the messy room; I am having a hard time getting mine under control too. Take some deep breaths, + hopefully tomorrow will be better.

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Kathryn, Wow, you have had quite a time of it! I am so impressed with all you are dealing with! You know, you are showing your daughter just what you are made of and I bet she will grow up knowing what she can do because of your role modeling! I wish I lived near you so I could help you out! You are just the kind of person I love to be around! Tough and ready to keep going! Do try to find someone to drive you.....maybe being tough isn't always so good! But I like your spirit! Hang in there! You will get into a routine soon. I too am probably always going to be on chemo as I am stage 4 with lots of little tiny mets on my lungs. Some days that so depresses me, but most days I see it as a blessing that I still have chemo and treatments available to me! Some days are just harder then others! You already know that! Take care and I will keep you and your family in my prayers.
Jean

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Don't let it break you, Kathryn! You're too strong for that.

*hugs*
Gail

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Sorry about the crazy port placement! I hope you are feeling better soon.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

If anyone deserves a break it is you. Why is it when the sh*t hits the fan, someone always has to turn it on high? I pray for strength, healing, and peace for you. {{hugs}}

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Kathryn - Well, this all sucks. As usual the "easy" things are rough on you.
You are a very driven, organized person. I really respect that.
You can vent anytime. You know I've got you back. I hope you got to have the meltdown you need, and I hope your pity party is over today.
Take care.

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

*sigh*...so much to deal with. Cancer just completely takes control of our lives, doesn't it? I was complaining just last week of how I spent every day at the cancer center with appointments, infusions, bloodwork etc. And it's no where near close to my house. Takes me almost 1.5 hours each way. Things will get better for you soon, I pray.

Sheri

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

you are having one super dooper poopie time.

<<<<<>>>>>>> hang in kiddo

mags

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I never had my meltdown, but I'm over my pity party. At least for now. Thanks for letting me throw another party here, and for everyone's support.

I was too busy today for pity parties, and will be all week. This is insanity. I was gone to appointments from before 9AM till 5:30PM today. Then I started working when I got home, for several hours. I'm exhausted. Part of my fatigue is dealing with the pain - it wears me out. My husband is in shock that I won't take the pain meds. He was on them for over a month with his collapsed lung - but he also had to have surgery for his. I'm getting off easy with just the chest tube. It is really painful, but I really hate nausea, and for me pain meds = nausea. In most cases I'd rather have the pain. Tomorrow chest X-ray at 10AM and surgeon at 1PM. If my lung has healed I can get the tube out. Oh, how I hope and pray I can get it out!

The endocrinologist is sending me to nuclear medicine for an iodine uptake, and for a thyroid ultrasound. We want to get these done before chemo starts again. He says the most likely cause in my case is Grave's Disease. If so, there are 4 options, but he knocked out two right away. They are options for other people, but not for anyone that will be on chemo. The first drug causes liver function problems quite often - not something you want to mess with on chemo. The second drug has a rare side effect, and we know about me and rare things... About 1 in 500 on the drug have their white counts drop to 0 out of the blue - no warning, and no way to predict who it will happen to. Not something you can chance on chemo. Surgery is an option, but very rarely used anymore - often causes more problems than it solves (hard to remove thyroid and not mess with parathyroid when the thyroid is inflamed). So most likely if I have Grave's Disease, I will have to take the radiation to kill my thryroid completely, and then be treated for hypothyroid the rest of my life. But he says if I have too much nausea - if I have vomiting issues - it will be a mess trying to make sure I get the right levels of thyroid medicine in. And I guess the pill form is harder to regulate with chemo. He said that IV thyroid medicine would be best. But it needs to be given every day. My husband or my daughters might have to learn to access my port and administer it. Or maybe I'll be able to keep the pills down, and the right amount will be absorbed.

It might not be Grave's - that is why the tests are needed. There is still a chance of a nodule, and with that we can use the radiation to kill the nodule and almost always everthing resolves. Or it may be thyroid cancer. It isn't common, but then nothing I get is. And here is another thing to wonder about - we looked up the pathology of my recent needle core biopsy - the structure of the cells is consistent with colon cancer metastises, but sometimes thyroid cancer can take on that same look. Rare, but it happens. Once again, rare isn't really rare for me... So now I really want to know for certain what we are dealing with here. I don't want to be back on colon cancer chemo if I have thyroid cancer with spread, and not colon cancer with spread. Even though the odds are really that it is stage IV colon, I need to know what is going on with my thyroid first.

I also could just have hyperthyroidism not caused by Grave's. Depending on what answers they get from the testing, the solution might be affected. We just don't know much till testing. And then it might be fairly easy to solve, or very difficult during chemo.

My oncologist said not to start coumadin like I was supposed to after my port placement. He wants all the hospital records from last weekend, and my chest x-rays from tomorrow, and the surgeon's report after I see him tomorrow. Then he wants me to come in for an appointment Thursday. The thyroid tests need to be done using two consecutive days - which means tomorrow and Wednesday or Wednesday and Thursday. This means that no matter what I am going to have medical appointments every day this week - just like last week. Arrggghhhhh! When am I supposed to work? I'm sinking. But at least it gives me no time to sit around feeling sorry for myself. But I do get frustrated. And tired... And now I don't know if I can even start chemo this week. They might make me wait longer for healing from the punctured lung disaster. I'm scared of the cancer growing - making it to my liver or somewhere other than just lymph nodes.

One appointment today was not medical. But it was needed, as I hadn't done one since last October. I now have a new short hair-cut. First time in my life. It is actually kind of cute. I thought it would be traumatic getting it cut - but compared to most of it falling out during FOLFOX, it was no big deal at all. I thought it would look a lot worse than it does. And it gets me one step closer to no hair should that happen soon on FOLFIRI. I think it is easier to deal with the loss in increments. ;) My friend that drove me to appointments today has known me for 25 years - all of them with long hair. She was surprised. My daughter told me I have a "MOM" haircut now. I'm not sure if that is good or bad... My husband said I have the Meg Ryan look - I think that is good...

I did meet with the psychologist today too. She is a good match for me. She got into her specialty due to her life. She lost both of her parents at a young age - mother died from cancer when she was 21, and father from another medical problem when she was 22. Then when she was 35 her husband died of cancer (Hodgekins lymphoma). She had young children and couldn't find any support for children or widows dealing with grief. She deals a lot with patients with chronic illness and their families. I'll have another session alone, and then the next one we are bringing in my husband. Then one more alone, followed by one with the whole family. So I had two things turn out very positive today! That really helps.

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