Guilt over not being super woman right now

[LaciK]

Next week it will be 9 months since my initial diagnosis. I have been struggling lately due to the fact that I put my adjuvant chemo on temporary hold to have my reversal surgery on 4/22/16. This has made subsequent chemo treatments more difficult to deal with due to bowel accidents and increased gastrointestinal issues. Although I could have had my reversal done back in February, the timing wasn't good from a work perspective, so the surgeon and the oncologist worked out a compromise to wait until after tax season.

In addition to all of the medical and family issues over the last 9 months, I wound up selling my CPA firm after 25 years of being in charge and I am now an employee of the new firm. I only revealed my "health challenge" to a handful of clients so far. Although I was hoping to avoid starting chemo during tax season, the oncologist made it clear that wasn't a viable option. Outside of a few transition issues, tax season went fairly smoothly and now the focus is mostly on being a cancer patient and trying to process everything that has happened since last September. I am only contracted for 20 hours per week with the new firm. I did miss a few work days following the two Xelox infusions during tax season and additional down time due to medical appointments and ilieostomy leaks, but still managed to accumulate over 250 hours of PTO banked from tax season. All in all, I worked way less hours than I usually do, but I was proud of what I was able to accomplish work-wise.

OK, so I am typical Type A (enjoys being in charge, likes helping others, gets things done, etc...). I derive satisfaction from helping people navigate a complex tax system by minimizing their tax liability while following the rules. Before the last chemo infusion last week I was having difficulty with an accounting project (didn't approach it very efficiently, couldn't balance the spreadsheets, spent way too much time working on it) and this was when I was finally feeling semi-human. I am also forgetting things easily (chemo brain). Since my memory is typically where I store most things, I have no system for dealing with this. For example, I totally forgot that I received a notice that my driver's license is expiring early next month until I got another letter in the mail which was outlining new procedures for renewals. The first sentence of this subsequent letter stated that I recently had received a notice to renew my driver's license. My first thought was no I didn't, but upon further thought I remembered that I had received the renewal notice. If I hadn't received that other letter, I would probably find out that my driver's license had expired after there were consequences later down the line.

I should mention that the guilt I feel over not working right now is self inflicted. My new employer has been very understanding and is allowing me to work exclusively from home (or not work). This guilt is causing stress and I am unable to fully relax and truly take advantage of not having to deal with my clients right now while dealing with the remaining Xelox treatments as well as the effects of the reversal surgery (uncontrollable bowel movements). Immediately following the infusions I experience shakiness/restlessness from the high steroid dose, increased appetite for a couple of days, constipation (despite eating some fiber and partial Metamucil wafers) and intestinal upset (queasy) then followed by more intestinal upset and loose stools over which I have very little control. I try to spend additional time in the bathroom waiting for something to come out and then walk around and go back and try again. When I finally go and sit down, that is when my bowels free flow. I am trying to focus on being grateful for the comfortable disposable underwear and flushable wipes in addition to the fact that I can pop in the shower at any time and rinse off quickly (without worrying about ilieostomy making a mess or having to spend time changing the appliance). I am eating a minimal amount (enough to take with my oral Xeloda) due to the fact that what goes in must come out and it is such a pain having to heat everything up (including any drinks which cool to room temperature).

Even while typing this, I am thinking that this sounds ridiculous but I am hoping that I am not alone and this resonates with some of you. If so, how did you deal with it? I have spoken to my therapist and people keep telling me that I have to give myself permission to rest but I am finding that it's not that simple. I've always been my own worst critic but it's not helping right now.

I have recently spoken with other rectal cancer survivors through Imerman's Angels and Colon Cancer Alliance and it seems as though these individuals were able to power through more than I feel up to right now when they were in treatment so that didn't help. These individuals are 5, 8 and 10 years out so I don't know exactly what their treatments were, so that may be a factor.

A couple of additional questions:
If your hypersensitivity to cold prevented you from eating or drinking even room temperature items (or your mouth would be numb and your throat would hurt), how did you deal with this?
How do you deal with the days right before another Oxi infusion (this is the best you are going to feel because you know what is coming and it may even be worse than last time)?

Thanks for your time, patience and understanding. Chemo sucks and some support right now would be helpful.

[macpudd]

Hi Lacik,
Wow you have had an action packed 9 months, I am tired just from reading all the things you've gone through never mind actually being the one living them. A cancer diagnosis, surgery, chemo, surgery more chemo, selling a business, new work status, no wonder you're not feeling like superwoman. One thing I've come to realise from my cancer journey is to try and not compare where I am at in my recovery to other people's, everyone has different issues, medical and emotional. You are literally in a fight for your life and everything else has to be subserviant to that until you get through this. Its obvious from your post that you really enjoy your work, and that it is very important to you, but you also have to give yourself time to adjust to your new reality, so please dont let work concerns dictate your chemo or treatment schedule, when your recovery is further on you can make up for lost time in work.
Your therapist is right, you do need to give yourself permission to rest, but I know from personal experience this is easier said than done, I only accepted that I needed to rest and allow my body to heal when I more or less hit rock bottom and became totally exhausted both mentally and physically. This had the effect of making my recovery longer than it needed to be.
As regards chemo brain, I was proud of the fact that I used my diary so little because I could retain everything in my head, I now find I have to write everything in my diary, set reminders on my phone, be promted by my wife and family to do things that previously I took for granted, its a pain in the ass, but its my new reality for now anyway.
You seem to be a strong person and you will get through this, I found chemo was like doing a marathon or endurance event, at some point you hit "the wall" and think I cant do this, but you will find the strength to do this, there is no other option.
Also discuss every side effect you have with your onc they might be able to adjust dosages to help lessen the side effects.
Be kind to yourself and accept any help that is offered, good luck with your recovery.

Regards
Macpudd

[horizon]

I should mention that the guilt I feel over not working right now is self inflicted. My new employer has been very understanding and is allowing me to work exclusively from home (or not work). This guilt is causing stress and I am unable to fully relax and truly take advantage of not having to deal with my clients right now while dealing with the remaining Xelox treatments as well as the effects of the reversal surgery (uncontrollable bowel movements). Immediately following the infusions I experience shakiness/restlessness from the high steroid dose, increased appetite for a couple of days, constipation (despite eating some fiber and partial Metamucil wafers) and intestinal upset (queasy) then followed by more intestinal upset and loose stools over which I have very little control. I try to spend additional time in the bathroom waiting for something to come out and then walk around and go back and try again. When I finally go and sit down, that is when my bowels free flow. I am trying to focus on being grateful for the comfortable disposable underwear and flushable wipes in addition to the fact that I can pop in the shower at any time and rinse off quickly (without worrying about ilieostomy making a mess or having to spend time changing the appliance). I am eating a minimal amount (enough to take with my oral Xeloda) due to the fact that what goes in must come out and it is such a pain having to heat everything up (including any drinks which cool to room temperature).

Even while typing this, I am thinking that this sounds ridiculous but I am hoping that I am not alone and this resonates with some of you. If so, how did you deal with it? I have spoken to my therapist and people keep telling me that I have to give myself permission to rest but I am finding that it's not that simple. I've always been my own worst critic but it's not helping right now.

I have recently spoken with other rectal cancer survivors through Imerman's Angels and Colon Cancer Alliance and it seems as though these individuals were able to power through more than I feel up to right now when they were in treatment so that didn't help. These individuals are 5, 8 and 10 years out so I don't know exactly what their treatments were, so that may be a factor.

A couple of additional questions:
If your hypersensitivity to cold prevented you from eating or drinking even room temperature items (or your mouth would be numb and your throat would hurt), how did you deal with this?
How do you deal with the days right before another Oxi infusion (this is the best you are going to feel because you know what is coming and it may even be worse than last time)?

The constipation is normal. I would take stool softeners before Oxi infusions and it still was an issue for days for me.

I got to the point where I would microwave room temperature water so that I would be able to drink it.

The last week before an infusion where I wasn't taking Xeloda was the best/worst. I started feeling "normal" again and then before I knew it it was time to start it all over again. You just have to power through it and remember why you're doing it.

Feeling guilt over having a disease you can't control is only making you feel worse. Give yourself permission to accept there are some things you can't control.

[kellywin]

LaciK,

You're definitely not alone with your feelings. I am a very strong person, always been super focused on my career. I'm the one in the family that makes the bulk of the money (I also spend the bulk of the money). I'm an Executive at a Bank at a small, extra small bank. One location, 24 or so employees total for the whole bank. I have a very demanding job and I wear a ton of hats, I had no problems (physically at least) with working during radiation, but chemo did kick my ass, it was rough. I did the first 2 infusions while I was on disability from surgery, but I came back and did the other ones while working full time. I had to take days off for chemo and a few days after because I felt like total shit. Not to mention the bowel issues. I didn't have a temp ileo, but I can tell you, things don't function well for a long time even when they hook you back up right after surgery! The whole experience was so hard on me, I'm not used to having control. I'm the badass, I'm the bitch, I'm the hardcore everything, but damn, not with this, it tore me apart physically & mentally.

It's been a few years, but the whole experience left its mark. The chemo brain stuff is really hard to deal with, I mispronounced words! Omg, it's so embarrassing to be speaking to your CEO and mispronounce a word. Or worse, you can't find the right word! I asked my daughter the other day while we were shopping if she wanted to go get some snacks on a different isle, when she said no, I said "don't you want to get any oregano?" As soon as it flew out of my mouth I knew it was the wrong word, i wanted to say "Granola". And there are things that I just can't deal with and my brain just stuffs them away, and I don't remember. I got a parking ticket a few months ago and I can't remember to pay it. First parking ticket in my life and I can't remember to pay it! Same with bills, I don't remember to pay them and my credit went to shit.

Yes, I think the anticipation of going to chemo is awful. I still get physically ill when I walk into my Oncologist's office every 3 months for check ups.
Managing bowels - for me Metamucil is a life saver. Daily. Work with it, find the right combo of powder to water. For me HUGE scoop in a coffee mug and fill that with water.

It's so hard when you are used to being strong and driven to have this thing that hangs over you that you have no control over. I can tell you it gets better. But it's going to suck for awhile. Think of it in terms of months, not days, - some wise person here said that I can't remember who it was - each month, things will get a little better. You'll probably never be the same, but that doesn't mean you won't be better. One day this won't control your life for every second. I think about all of it daily, each time I stand up in my heels and my feet scream at me, when I forget a word, when I sit on a hard surface with my radiation induced rock hard ass (luckily there's a nice new layer of fat to somewhat cushion it) and it hurts, when I have a hot flash, etc, but I try not to dwell. The most important thing right now is that I am here, I can be a mom to my daughter, the rest of it can kiss my ass.

While my experience is not the same as yours, no one's is. What you're feeling is real and it sucks. So sorry you are going through this.

Kelly

[SugarTits]

Hey, sounds like your expectations are your biggest enemy right now. I'd say that there is no way you should be handling things, only how you are handling things. You have so much to deal with...maybe try to make peace with yourself. Shoulds are BS, they only make you suffer. You're coping with so much more than the vast majority of people, you deserve credit and love - especially from yourself!

For my oxy treatments I just always told myself the awfulness is temporary. Just break it down into making it through the day. Pretty much like we do for all of this. Hang in there!

[Pita]

Get some of that stress out of your life if you can, your life is more important.
I owned a bookkeeping service out of my house for so many years working some days 20 hours if needed, was forced to stop due to a bad back and took me forever to mellow out. Hope you can do the same, it's so nice not to stress over work anymore.
"Reality is never as dark as the places your brain visits in anticipation" Try not to think about what's coming and that next dose of Oxi, deal with today and be thankful for another day. My best to you... (((Laci)))

[Sams wife]

A couple of you guys got me on this post.
Hubby's license was out for 6 months before either one of us knew. If he wasn't ID'd we probably still wouldn't know.
And I have to pay on a ticket too by the 20 something? Forgot already. guess I better put it in my phone. Oh, and I'm NOT on chemo.

As soon as things seem normal, it will (can, not will) throw you for a loop again. And no ones treatment is the same. Even if it seems like it. My phone is always with me so I put reminders in there. Now with me working, hubby forgets what we got for supper. I was just trying to think of a way (text or calendar) for him? Maybe it's time for a calendar.
I use to remember most stuff too. Don't anymore.

[mike1965]

Lacik, r

I know exactly how you feel. Our situations are very similar in many aspect. We are around same age, got dx around same time, and our dx are very similar. I have been trying to work during my chemo. I too have a very flexible work schedule. At first I tried to work each day and tried to take on a lot of responsibility. I would get stressed and try to do to much. This was the first few chemo sessions. The last couple of chemo sessions, I have been doing less and I do not feel bad about it. I have to remember this is a serious battle and I have to rest. I have to put myself first. I love my family and kids but this is a serious battle that I want to win. I found since I remember this I feel better. I try to exercise and drink plenty of water. I do not stress about work anymore. I know it is hard to do but it has been good for me. I take chemo in sections. I like numbers so. So I divide up the sessions into percentage. Since I am doing 12 sessions of chemo each session is 8.3 percent. I just finished round 5 so I am 42 percent done. It helps me to take one session at a time. I was having stomach pain and my doctor had me take a probiotic. It has helped me a lot. It has helped me regulate my constipation and diarrhea. You are use to being in charge and handling everything but with this you have to put your self first and get better. I pray all goes well with the rest of your treatment.

[LaciK]

I really appreciate everyone's comments. It helps to know that other people understand what I am going through.

I recently realized that my frustration is less about the actual work and more about feeling productive (and less like a cancer patient). Up until these last couple of months work has been a helpful distraction from all of the medical stuff. I was able to feel more normal when I was working. However, after the reversal surgery and two subsequent Xelox infusions, there has been very little relief from my cancer patient status; hence the meltdown.

About half way in between the last two chemo infusions, I was starting to feel better, but then the gastrointestinal issues flared up again to the point where I was stuck at home feeling rotten. The day before the latest infusion I felt some relief but I knew the next week would suck again.

I am finally starting to feel a little better. I have been able to go out and run some errands (with no bm accidents). Last Friday I renewed my driver's license and got my nails done! Feeling some relief in between infusions will help me stay positive that I can make it through these next two sessions and hopefully join the long-term NED crowd!