Dec 27, 2012 - 1:09 am
I had wanted to get on earlier and wish all of you wonderful people a very merry Christmas but I've had trouble loading the page - just tries and tries and then nothing. I hoped the "upgrades" would make it better, but it hasn't helped yet for me. I hope all of you had a good Christmas and will have an even better new year 2013.
And I want to thank all of you for your support for me during my daughter's battle with stage IV colon cancer. She's never joined any of the support forums and I understand and respect her reasons. She doesn't want to give cancer any more of her time than it's already taken. She leaves it to me to do the research and join the forums. She wants to put it out of her mind. This is how she deals with it. I understand. We all do what we need to do to deal with it.
Personally, I need you guys. I need to hear your stories of what has worked, what didn't, and how you deal with the effects and the fact of having cancer. I've learned so much from all of you and been reassured and comforted in ways I can't even begin to tell you. I was, for years, a hospice nurse. My dealings with people with cancer were at the end of their journeys, and this was how I came to think of cancer - as a life ending disease. My patients were dying from cancer, not living with it or getting well. So that was my perspective. And when my daughter was diagnosed, I could not see beyond the fear that this was it, the thinking of her as a "hospice patient." I was devastated, out of my mind, sick with fear and grief. My only child, my baby girl. 32 years old, with her own brand new baby, her first, a boy. And stage IV colon cancer, liver "full of cancer." She was very sick at diagnosis in early Oct. 2011. All of you helped me get a grip on all this, helped me know that we would find a "new normal." And we did.
And now I'd like to share with you our update. For a recap: her symptoms started late in her pregnancy, summer 2011. She was losing weight, had diarrhea. But she was working a high stress job, working all hours, worked until she went into labor, actually. Doctor blamed symptoms on pregnancy. Five weeks after the baby was born she developed a blood clot in her leg which ultimately led to the appointment with the hematologist who diagnosed her with stage IV colon cancer on a hunch - he had had colon cancer himself with a recent recurrence. It was all a blur - insertion of a IVC filter to prevent pulmonary embolism, then a loop ostomy, many blood and iron transfusions. CEA 6,800! Yes, that's right. Then chemo (Folfox) and all its side effects, a horrible reaction to Compazine that landed her in the ER and hospital, the need for many trips to the infusion center for IV fluids for dehydration. 32 radiation treatments and effects from that. Folfox stopped working after four months. Chemo stopped for colon resection. Then Folfiri with Avastin started. Theraspheres to the liver tumors in May and June. Radiation proctitis. Two episodes of severe rectal bleeding while she was home - over 100 miles from her doctors and hospital - requiring ambulance trips back to the city hospital, one with blood transfusion running in the ambulance. Terrifying times.
Then in August her doom and gloom oncologist decided that her CEA was going up again, Folfiri must have stopped working. Said the Theraspheres did not work, tumors "bigger." (This was based on CT scan - she had never had a PET scan). Told her husband we were reaching the end of the road. Stopped treatment. Wanted to have "the talk" with her. I talked with Suzanne Lindley of "Beat Liver Tumors" fame (15 year stage IV colon cancer survivor). She said do not let him stop the treatment! Said that CEA can go up with tumor death after Y90 spheres! So we cancelled the appointment with her oncologist and moved on. This is not a plug for Cancer Treatment Center of America, but that's where we went. We did not know what else to do. She had been going to the biggest cancer center within 200 miles, one recently designated an NCI cancer center.
So at CTCA they said they never scan until at least 3 months after spheres because tumors can "swell" with inflammation. They restarted her chemo (Folfiri) and added Erbitux. She had a phenomenal response. She had six treatments, then a CT scan. She also had a CT of the chest and a bone scan since she had never had those - both were clear. And she was started on other meds - Vitamin D, melatonin, etc. She also had a complete colonoscopy, since she had never even had one of those! (They only had gone as far as the tumor and stopped). She had consults with a naturopath, nutritionist, had accupuncture for her back pain, physical therapy and cold laser therapy for her neuropathy in her feet, chiropractor, etc. Her meds were "tweaked" several times. And she just got better and better. And she started gaining her weight back. Her pain all went away.
Fast forward to now. She is off all meds except Lovenox (blood thinner). The plan was for her to have four more chemo treatments after the first six, then four weeks off, then her first PET scan. Then develop a plan to try to finish off the cancer. She has had no new tumors and no spread of the cancer since her initial CT scan at diagnosis. The liver tumors appear to be "calcified," but the oncologist says that the PET scan will tell the real story. Her CEA when last checked, Dec. 11, was 10.4. Her weight is up to 152 from a low of 120. She looks wonderful, feels wonderful, wants to go back to work. She has energy and has her life back. She is enjoying her VERY energetic 16-month-old. She will have the last treatment Jan. 2, then wait for the PET scan.
This is where we stand today. And I am so thankful and wanted to share it with all of you. We were never given any hope. But this is where we are, and I'm looking forward to good news from the PET scan. It can happen. And those of you here who are stage IV and living with it or NED helped me believe it could happen, helped me keep hope alive and believe with my daughter, who has always believed she would get here. THANK YOU from the bottom of my heart.
I am going to try to add a picture of my daughter and her family. Wish me luck. YOU ARE ALL MY HEROES!!!