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How do you cope?

Sandi3322's picture
Sandi3322
Posts: 5
Joined: Dec 2011

Hi everyone!

This is my first real post but I've been a lurker for sometime now and finally registered today. First off, let me say Thank you to all who participates! The information I've learned over the last couple of months has been invaluble!!!

Ok so my story:
9/14/11 Wedge Resection LUL w/Biopsy of 1 mediastinum lymph node, unable to biospy others due to location.
9/30/11 DX Stage 3A NSCLC with spread to lymph node
10/27/11 PET/CT showed Metabolic adenopathy in Left mediastinum and left supraclavicular regions, most consistent with regional metastasis.
11/28/11 Started cycle 1 - Cisplatin 100mg Day 1 & 8/Etoposide 100mg Day 1 - 5 with adjuvant therapy (30 treatments)
12/26/11 Cycle 2 due to start - Same Cisplatin/Etoposide.

I'm exhausted all the time, find it very difficult to eat & sleep, and move like I'm 80 vs. the 47 I am. If I hear push past it one more time from someone who has not experienced this for themselves I think I'll lose my mind. I've always been a type A personality, but now I'm finding it hard/exhausting to complete even the simplist of tasks.

Tomorrow will be my 14 radiation treatment, which is getting harder with each one. How do/did you manage/cope?

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Hi Sandi. I profiled just like you, including the chemo agents and the rads, in April 2010, with the exception that I was 3B inoperable NSCLC, at age 59. And I'm definitely type A!

I guess first of all I should tell you that you can get through this. I've been NED (admitting that my onco is not one for ordering up huge numbers of tests) since the end of treatment in July 2010. How long that can last I have no idea, but it was definitely worth slogging through the first line treatment. The difference between how I feel now and how I felt, say, a year before diagnosis, is not all that perceptible.

As far as working through it goes, my profile photo was taken at radiation day 16/chemo day 14, and to admit the truth, I just about had to be winched off the stage afterwards. My nurse/navigator recommended (almost insisted) that I take the gig, and she was actually in the audience (great kid).

After that, I was lucky enough to be able to work from home, and I spent some time daily, no matter how badly I felt, on the computer doing work business, just to have something to divert my attention from the obvious. I also had a family tree book project that I was trying to get done pronto, on the theory that I might not have the chance later (and nobody else was going to do it). Not to mention watching a ton of movies and TV series on DVD. In other words, low physical stress activities to occupy the mind.

I was lucky enough not to have much problem sleeping, and the eating issues didn't crop up until my esophagus was pretty throughly roasted somewhere around day 25 of rads. However, I did have crushing fatigue, probably radiation-caused, where I felt like I was carrying a grand piano on my back. Walking around in the back yard on a beautiful day was a huge task, and I remember telling my wife that if I had to live the rest of my life that way, it was probably 60% likely that I'd rather drop dead in my tracks right there on the spot. All I can tell you about that is that it does not last, luckily. You WILL get through it.

You don't mention what kind of support system you have (ability to take time off work, help around the house, etc.), but I would recommend definitely not considering yourself a lesser person if you spend the majority of your time crashed in a chair. You need to have some activity, but there's no need to try to prove a point. It's perfectly OK, in my humble opinion and having been there, to switch your mind into neutral or to divert it with meaningless make-work activities as often as possible. Goal number one is to preserve your strength, both mental and physical. And don't feel guilty if you want to stay away from the general public in order to minimize your chances of picking anything up when your blood counts are low. I was a real nazi about that, even to the extent of getting a few people irked at me, and it paid off.

Look on the bright side: you are close to halfway through your treatment regimen, and if you're like I was, you'll be feeling close to human again about two weeks after it's done, and really good within a month. I was hiking up mountains (albeit small ones) Labor Day weekend, and my treatments ended in mid July. You can do this!

All the best, and feel free to ask any specific questions. I kinda just did a brain dump here.

Steve

feistyD's picture
feistyD
Posts: 21
Joined: Nov 2011

Hi, So sorry for what you are going through. I am stage four NSCLC with mets in my spine (L3 vertebrae, which is almost completely gone). I had radiation in late May on the spine tumor, and am waiting to see what they can do with my lungs, if anything. At first I thought I had stumbled into a living nightmare, and sleep was my only escape. I became an old lady seemingly overnight. I went from hiking in Yosemite to barely being able to walk.

Yes, every day is a challenge, especially as I really, really just want my life to be back to NORMAL. I am 56 years old, and I was on track to pay for my daughter's college, save for retirement, spend time with my aging parents, travel, work, etc. Fortunately I am still able to do most of those things except travel, albeit at a reduced level. I am still working (I am a college professor), and people ask me why (I am eligible for disability retirement). It's because it makes me feel NORMAL .

Yes, it is hard to go in to work on Monday after chemo on Friday, or teach in the morning and then have a PET scan in the afternoon. I don't know how long I can keep it up. But it helps me cope. I cope by trying to keep the same lifestyle- cooking, cleaning, limited shopping, limited exercise. Everything is downsized. I used to swim laps; now I do water walking with the old ladies.

I cope by trying to be a teacher, wife and mother, not quite the one I was before, but the one I am now. Not a cancer patient first and foremost, but a human being. It is absolutely the hardest thing I have ever done. Somedays I think I can't do it. But getting up and going out is better than staying home and wallowing.

Sandi3322's picture
Sandi3322
Posts: 5
Joined: Dec 2011

Hi Steve and FiestyD, thank you for your replies.

I'm blessed to have an excellent support system of family and friends. I have no doubt that I would not have made it through the first week without them. I'm also blessed in that I work for an organization where I'm able to take a couple of months off. I'm not sure how I could/would have dealt with this if I had to "work past" this.

Everyday has been a new challenge, and so far I'm hanging in there, but there has been more than a few times I've wondered if it's worth it, but I keep going anyway. I decided in the beginning that if I had to lose my hair then I wanted to see everyone else bald also, lol So, I waged a virtual campaign to make all my family and friends bald with me. Since I use to do graphic design work (which I loved) it's been quite entertaining for all of us and keeps my mind busy in the process. My goal is to make everyone bald then create a portrait of all us together as if we all shaved our heads then went and had a picture taken.

As for the sleeping/eating... I seem to swing from one extreme to the other. I either want to sleep ALL the time, or can barely get any at all. Seems to be a back and forth thing for me, and even a good strong sleeping pills only helps me sleep a couple of hours at a time. As for food... the same, I'm either hungry all the time (mostly craving orange Juice) or don't want to eat at all. Last week I lost almost 9lbs where I had been gaining about 1/2 pd per week the 2 weeks before. Talk about a roller coaster.

grannylove
Posts: 183
Joined: Apr 2011

So sorry you are dealing with this horrible monster! But you are so very welcome here and it does help to relate to others who know what you are going thru. We all are on a journey with this dreaded disease but each one's journey is different. This is a great board to find encouragement, answers, suggestions or just to vent. Many, many caring and knowledgeable people on this board. I am glad to hear that you have a great support system, that is wonderful! As far as coping.....Ex had some great insights. Me, personally, had to take it one day at a time. I felt like I was always in a bad dream, waiting to wake up. That is why it is so important to have someone with you at Dr. visits etc. The thought process seems to take longer when focusing is so hard. I kept trying to prepare myself mentally, emotionally and physically for whatever had to be done to treat this disease. When I didn't feel like eating, I ate something anyway. I drank Ensure boost to keep weight, because I knew my body needed nourishment. I drank whatever I could. I took it one day at a time. That's all I could deal with. It is a tough road Sandi, but you can do this. We are here to help you thru this. Know that you will be forever changed because of this disease....mentally, emotionally and/or physically. You will have "new normals". Not a bad thing just a new thing. You might even have a bout of depression...very normal also, as long as it doesn't last a long time. It's okay to be angry, cry, kick and yell..... just use that anger to fight against this awful monster. Stay positive and stay strong! Healing thoughts and prayers coming your way Sandi. God bless. Cheryl

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I was diagnosed in May 2010(you can read the details on my profile)and I will tell you it is one long haul. Aches and pains are pretty much a part of our lives now although I must say that right after I completed radiation I joined a yoga group. Yoga was the most amazing cure for those aches and pains AND helped me relax my mind too! I am not much into the meditation type stuff but the yoga was PERFECT and just what my body and mind needed. If you decide to try it, find a class that consists of gentle stretching with props IE yoga blankets and blocks. Svaroopa is the form I took. The real "posing" type of yoga is just too hard with our aching joints (unless you are already doing that type). I will say that about a year out of treatment my aches and stiffness were nearly gone. Unfortunately for me I had a recurrence with a small met to my spine and now I am taking Tarceva which is working very well for me, but causes....muscle aches and pains! Also you might want to ask your doctor for some anti anxiety drugs to help you out a bit. I took, well still take, a very small dose of Ativan once a day and this helped me to sleep and kept nausea at bay. Keep us posted on your progress, there is nothing you can't ask us as one or another of us has gone through the same thing!
Anita

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