stage 4 roll call

lesvanb said:

Here I am
I was DX stage 3 May 08, and then stage 4 June 08 after one liver met was found on a PET/CT. I was resectable for the liver at diagnosis. I had 6 weeks radiation/chemo with Oxali, and was hospitalized 1/2 way through with an opportunistic colon infection. Both the LAR and liver resection were done last fall in 1/2 the time the surgeons expected– 2 and 2 and 1/2 hrs. Then my brother-in-law died unexpectedly mid-October 08 in between my two surgeries. I started FOLFOX chemo the very end of Dec 08 and went until May 09. I have been NED since surgery and after one PET/CT scan, though they are watching a 1 cm spot on my liver that is believed to be where the surgical clamps were placed during the liver resection (entire right lobe and gallbladder). My CEA hovers around 1.5. I still have residual neuropathy in the soles of my feet and tips of fingers; it's been changing just a bit for the better just recently. My bowels have a mind of their own, but mostly I have control, though I am very aware of the nearest bathroom, and carry wipes and a change of underwear in my purse.

Certainly it's wonderful to be finished with the year's worth of treatments. A year ago Sept 10, I had my first cancer surgery to remove the rectal tumor. Two Sundays ago my husband and I rode our horses up into the Wind River Mountains nearby. Just a 10 mile ride up to about 9000'. The aspens were just starting to turn, and there was just the faint sense of chill in the air up high. Gathering thunderclouds followed us back down, and just as we loaded up to go home, the first drops fell, dotting the dusty earth. One of my surgeons after my second surgery, the liver resection, in late October 08 said that, yes, perhaps I would be able to ride my horse at the end of next summer. How grateful I am.

Yes, there's gratefulness, and there is also the experience of having a life-threatening disease, experiencing life-threatening treatment for over a year, and now, though disease-free, still at high risk of recurrence for the next two years. It just takes one slightly weird CT scan or blood test and who, me, see raindrops in the dusty earth?

Having a serious illness can seem like our body has betrayed us. What has been fascinating to me through all this is that, when I was most sick from treatments, and unable to do much more than just be alive, there was no sense of betrayal, no planning, no judgement, and no fear. However the instant I felt even the slightest bit better, then, the thoughts such as "when will this end?" "I feel horrible!" "how will I ever get through this?" etc etc would move in and clutter up the space.

I must admit at times, especially knowing other's experiences of the living and dying, that I feel guilty that so far I am doing OK. I know this is foolish and smacks of survivor guilt, yet it is there. I remember that there is no bar of suffering we have to leap over to be OK, to have suffered enough. I was DX with stage 4 rectal cancer, and yes, that other shoe could drop at any time. I appreciate the patience and equanimity I have experienced living this past year, and sometimes I am just plain scared as I look down the path.

Leslie

sfmarie said:

Stage IV and Need HOPE
Thank you all for sharing your stories. I need all the hope I can get. My sister was dx in 03/09, 39 years old, mets to liver and peritoneum. Emergency surgery to remove tumor and resect colon. Four months of Erbitux, hoped to have liver resected, but chemo holiday led to uptake in mets and now in lymph nodes. Currently on 2nd treatment of Avastin and 5FU, doctors are saying must do this chemo round before considering any other treatment options. The stats for this type of mcrc are grim and protocol is dictating that other procedures are not going to have much benefit. Advice, encouragement and similar stories would be wonderful! This has been one hard journey.

changing2 said:

Still Here!
Hi! Diagnosed July 2006. Did all the chemo regimes. Not a canidate for trials etc. Mets to lung and liver. Stopped tx in Jan.....and I'm still enjoying life:)I'm so blessed! Manny