The crazy train never stops

Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
I woke up feeling fine yesterday moring. But a few hours later I started to fell very uncomfortable - mostly in my lower right back. I'd been a bit gassy lately, so I took a coupld gasX hoping that might help. But within minutes I was in severe pain. Pain so strong that I was sweating and felt like vomiting. No matter what I tried it wouldn't let up. I walked, I sat, I laid down. I tried my right side, left side, back, and the fetal position on my side and on my tummy. I got to the point I thought I was going to throw up.

I decided I had better call my husband. I told him to call me back in 1/2 hour, just in case this didn't resolve. After that I decided I had better call the oncologist. I don't remember reading about any side effect like this, but better safe than sorry. By the time they returned my call, my pain had dropped a lot, from a 10+ to a 4. And by a little later to a 2. The onc still wanted me to come in so they could check my urine and check me over since chemo was scheduled for today. I had blood in my urine, but no signs of infection at first glance. So they are pretty certain I passed kidney stones. The only way to know for sure is to do a CT scan, but I've had too many. We agreed on that. But if the pains come back very severe again, I had to get one. Last night around bedtime I had a lot more pain, but I'd say it was more in the 5-8 range. i can handle that. And this morning it was better.

I went in for chemo today, thinking that the only thing that could stop me from getting it was the culture they started from my urine showed anything strange. But they didn't have results yet. I had my labs (we've learned the trick on how to get a return with my newest port, so it went much faster than the last two times). I should have had chemo again last week, so I was certain my labs would be fine three weeks out. But not. My WBC is way too low. Neutrafils .7. First time around with FOLFOX at the 2 week point my neutrafils were 1. That is to low also, but he let me go ahead with chemo and follow it with Neupogen shots. And he removed the bolus. I was able to get through the rest of my chemo without the bolus, and with Neupogen shots.

Now it will be FOUR weeks before my next chemo. I'm thinking at this point that if it was going to be this long, I would have been better off trying for surgery to remove those nodes first, and follow it with chemo. This is ridiculous. And I mentioned removing the bolus for the next cycle since it worked so well first time. But he says no - he wants to try one more time, and have me get Neulasta and see if that will do it. They tried to schedule me for chemo Tuesday, disconnect Thursday, Neulasta on Friday. I told them they are fricken' nuts! I'm trying to regain my life this time around and get away from all these ridiculous appointments. I'll feel like total crap Thursday and Friday, and if I have to make it to medical appointments both days, there goes my chance at being productive for anything else. I like my Thursdays, with Saturday disconnect at home. I can work Thursday and Friday. Saturday, Sunday, and Monday aren't great for me - but it is MUCH easier for me to be out of the office on the weekend.

So I will have chemo next Thursdsay, putting me on the bad schedule I don't want. This means I'll be having one of my worst days for my son's choir concert day #5 of my schedule. It means chemo will be scheduled for Thanksgiving (not doable), and over Christmas, and that my bad weeks are the week I have my son, and the good weeks are the week I don't have him. I HATE getting stuck with these schedules that just don't work and add heavily to my stress load.

I tried hard to talk my onoclogist into letting me get chemo today and following up with Neupogen or Neulesta. He refused. He is always the most aggressive oncologist around. But he told me if he let me have chemo today, I would end up in the hospital. Just like the first time around fighting this beast, nothing is going right second time around. I shouldn't have even had a second time around. 3 months of being tricked into thinking I was NED - that is the only break. Then right back to the problems - puncture my lung putting in the port, no leucovorin for treatment, a break so I could go on an already sceduled trip, which I then couldn't go on, and now a delay which pushes me out 4 weeks between treatments. And on top of it all my thyroid is a mess and they haven't figured all that out yet. Add in some kidney stones for fun. I'm ok with the handfulls of hair falling out, plugging my shower, covering my clothes and furniture. I'm ok with the fatigue. I'm ok with the constipation and diarrhea I had to fight. Just don't mess with my schedule!

We've known my cancer was growing since before the middle of August - that is when my CEA showed it was at 8. But we had to wait and re-test it in case it was a fluke. Then we had to get a PET scheduled. And then core needle biopsy. Then I needed another port put in, and had the fun of the collapsed lung added in. CEA up to 12 three weeks ago when we finally got started. I pushed as hard as I could to get going on chemo quickly. But now I wish I hadn't. I had so many things I wanted to get done and in order before going through all of this again. Everything is a scattered mess. Nothing is running smoothly. I would have been better off waiting until after my trip to start. Then I could have actually GONE on my trip. And then I could be on the schedule I need for my family and work. And I would have had a few weeks to take care of the things I wanted done first. Sure, I have some time now - but now I'm already struggling to catch up on getting behind from all those medical appointments and a hospital stay, and chemo fatigue. I am beyond frustrated with always making the wrong decision and always having everything messed up. I am beyond jinxed. Most of the time we laugh about it, but I'm beyond laughing now. It just isn't funny to me anymore.

I had a meeting with my therapist just for me. Then I had one to discuss a meeting including my husband, which we already attended together. Then one to discuss meeting with the entire family. That was supposed to happen Saturday after this one. I couldn't schedule it for this Saturday, as that is my disconnect day - timing won't work for a Saturday AM appt. So now I had to call and cancel that one, because that will be my disconnect day. I tried to see if we could get in this Saturday instead. Nothing open. My son has to march for the Gopher games the last two Saturdays - then we are into November. I've already been NEEDING to have this meeting with my family since the beginning of September. I am not waiting till November. Heck - who knows what will happen to mess the schedule up by then anyway. I did NOT want to be in charge of our family meeting. I want that stress taken off of me. That is why I've been going to a professional. Now it will all be on me again. This won't come off the way I want it. I will be the **** - rather than having someone else explain whey many of these issues are so important right now.

I know, better than most people, that you really can't plan anything when dealing with cancer. But I still keep hoping that sooner or later things will be more predictable for me. I try to live like I can plan and schedule things. I NEED things planned or scheduled to look forward to, and I need some things scheduled just to make life with a large family work right.

I am so tired of being frustrated or angry or just sad because nothing ever goes right. It is getting me down.

I hate doing NOTHING to fight the cancer right now. No chemo, no surgery. Just sitting around with no energy, a bad attitude, and too much stress. Not killing any cancer this way...


  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Kath ,mate! feel so sorry for the unforeseen you are
    having ,keep calm, I thing is time to you to relativize and start to thing about you, you are always in stress and this is not convenient right now.
    isn't it possible to have a rest in your business ? what about a week or two in isla?Maybe you can work from isla too. l don't know... but keep relax please! health is first!
  • msccolon
    msccolon Member Posts: 1,917 Member
    HUGGGGGGGGGGS! You need a good hug and a solid shot of whiskey! ;) Sounds like you just can't get a break! Bad enough the chemo makes us feel like ****, but when we try to have some semblance of a life and it interferes that just about negates the reason we are even doing chemo, to live! I would have a heart to heart with my onc and let him know just how much your schedule and LIFE is taking a hit. Something has to give and sounds like you need to remind him you are doing this for YOU, not him, and YOU need to have some life! I know my doc was always amenable to changing it up when i needed to attend to family business; remember, no reason to save your life if there is no living actually going on. I am glad to see you are doing counseling, it helped me tremendously! Just wanted to let you know I am rooting for you and sure hope things turn around for you soon!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    One Thing I've Found that Cancer does not have a "timetable."

    It's main concern isn't anything that we've planned or got going anytime or anywhere? That's the problem with this mess - alot of decisions are taking away from us. I've always talked about Cancer as Concession, Concession, and more Concession.

    The more we give, the more It takes...

    I know you're a Type A and I can feel your frustration, Kathryn. You've had a terrible run of bad luck and things not going the way they should.

    I'll tell you what, somewhere along the treatment line, the onc could "set you back" a week or so to realign your schedule. If they are that hard-nosed, then you gotta' take that time to "call a shot or 2." After all, if 7-days is gonna' make the difference between life and death, then it's too late anyway, do you agree?

    I can count the things on one hand we've been able to schedule and do in the last 6-years. My focus always has been on getting back to work and getting a check home, so we can keep the lightbulb plugged in and some cornbread on the table. Anything, I've been able to get has been just gravy and I appreciate so much more.

    I've had to juggle my treatments and push them back about 10-days with both my oncs so I could have 2 days to stop in on the Palooza folks 25 miles down the road from me. I told him I get these 2 days and you can have the rest, but I'm making this call. Again, for the reasons above: I needed it and if 10 days made a difference, why am I doing this anyway? One onc said "I bribed him." But they both agreed.

    I think you can turn your schedule back in your favor and rescue your holiday and get the time back with your son, if you just find a way to push the next cycle back so you can come back around where you need to be.

    You know I know it sucks - I've got way too many years of this under my belt.

    As I said about Concession, Cancer takes from us - and then it becomes what we take back!

    Take back!

  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    You speak of wanting
    You speak of structure in your life by defining a chain of schedules, each in their own place in time, until a link within the chain breaks or moves due to outside and unexpected events beyond your control. Well, my life began to work that way the longer I lived with type 1 diabetes. For 27 yrs (1977 to 2004) every day and night around the clock, I had to schedule my meals, my daily injections, checking my blood sugar, endure the fluxuating gyrations of high and dangerously low blood sugar levels (which led to periodic seizures), and to always make sure I had carbs with me. I worried if I didnt have a plan or my daily schedules were interrupted, i would feel vulnerable. Soon my life became a pattern of compliant dependency, both emotionally and physchologically. Ten Years ago, I wanted to go to great lengths to become insulin independent and I applied to be a organ recipient at the Univ of Minnesota Fairview Med center in Minneapolis under the brilliant and skill of DR David Sutherland, world renoun transplant surgeon. My pancreas transplant lasted only 5 days due to a blood clot as the organ was removed. I tried again two additional times for a pancreas transplant at UCSF in Calif and the third attmept worked in 2004. Im have not needed insulin for 6 and half yrs and no longer a diabetic.

    Our experiences with diesase, whether cancer, diabetes, or many others, thrust its demands on us and elbows its way front and center, insisting we focus on its insatiable prescense as we find ourselves building our daily lives around it. I wanted diabetes out of my life to regain a better quality of life and freedom. I was fortunate to have 3 attempts at a organ from 3 different donors. In order for me to minimize my chances of having a rejection of the organ, I was required to take 3 immunosuppresant medications daily.

    In Feb 2008, 4 yrs after my organ transplant and daily antirejection meds, I was dx with cancer and again in Sept 2008 with a recurrance of the same cancer. According to my transplant surgeon at UCSF, the very medications to protect my transplanted organ could very well have triggered cancer in my body. Ive been in remisison for 2 years and my pancreas is working fine with reduced levels up to 50% of anti-rejection meds.

    Kathryn, find those times for yourself and your family, discover those moments of time where you can do exactly what you want without answering to to all the merciless demands infiltrating your life. Collect witihn your heart and memories the very best life has to offer, do it today. Were here for you, always

    Heart of Soul
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Come on over, we'll sit on the porch swing and talk about mundane things, watch the traffic a bit, gossip over my 1964 swimsuit model neighbor that lives across the street, I'll make some mint juleps and we'll just sit back and relax. After a couple hours of that, we'll go to the flower bed and pull a few weeds, get a little frustration out.
    I really wanted to go to CP8, but,never knew a schedule until now, and with seeing Stanford onc on 18th, glad I didn't plan to go after all, I'd be afraid I'd miss the plane back ETC... scheduling as ever for us all, changes our plans, sometimes day to day.
    So many things with cancer change our ways of life. And HECK yes, it ticks us off, and yes, we hate being ticked off. And it's a crazy circle of life we're on.
    I guess, what I'm trying to say, is sit back and relax if you can for a moment or two, hopefully for a few hours.
    Talk to your onc, get your scheduled changed to what is more acceptable to you!!!
    Thinking of you.
    Winter Marie
  • chicoturner
    chicoturner Member Posts: 282
    Hi Kathryn, sorry you are
    Hi Kathryn, sorry you are feeling so down. I know that is how I was feeling earlier this week. Pain will certainly bring you down too! I am glad you are at least feeling a little better and having written it all, I hope you will continue to get better! It is ok to yell here!! You are in my thoughts and prayers. Jean