I just can't do it ALL anymore. That is part of the problem we discussed in the Air last week. I look fine, I act fine, but I just can't do what I used to. The biggest difference is that I can't multitask anymore. I used to be the queen of multitasking, now it overwhelms me and exhausts me. If I had company coming or a party to plan, I could organize the whole event, cleaning, shopping lists, decorating, etc. in my head. Now I have to make copious notes and still can't focus on menus, or shopping lists. Everything takes longer because I can't think as clearly or shop as efficiently. As a result, I no longer enjoy having company and for the first time in almost twenty years did not throw my annual summer party. Last week three different people called to say they were coming for a visit within days of each other and I started shaking, crying and was unable to function for a full day just thinking about it. After they all left, I was exhausted for days.
When I am stressed, tired, anxious, the pain does get worse, mostly at night. I tend to tense up in my sleep and wake up to sore bones, muscles and headaches. This is where we have to adjust to the "new us". Stress and anxiety cause us exhaustion and pain, so now we have to figure out how to have less of it in our lives. That is the hard part, because the things I loved to do (entertain) now cause me stress. So, now instead of big parties, I will settle for just having another couple over. I did actually put on my big girl panties and told one friend that wanted to come for several days, that no, I wasnt up to it. That was a first for me. There is still the problem of mothering though. Because no matter how old my children are, I will always worry about them and stress when they are stressed. But, if I can lessen the stress everywhere else, then I will be able to handle the "mother stress" better.
Somedays, when my day consists of going to the lake and then going from there to the Sound and all I do is read and float and sleep, I feel a bit guilty - but I feel so much more relaxed, stress free and happy, that the guilt goes away quickley!
So, no, you are not crazy! You are a very sensible woman working to keep her health and sanity!
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years
12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain
2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"
4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek
7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.
9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.
12/11 - Scans show no new growth, some mets stable, others have shrunk!
12/22/11 - 5 year survivor!!!!!
7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.
10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable
Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials
4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.
My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162