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A Merry Christmas!

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

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!!!

Sincerely,

Sandy

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Although her journey has been horrible and frightening, I'm so glad that there is now a light at the end of the tunnel.

You and so many others have been a rock for me for several years. May 2013 be a better year for all of us.

My best to you and yours,

Luv,

Wolfen

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

You just have so much going on. I think about you all the time. I think we have a special connection because of our daughters - there is no way to describe the pain of seeing your daughter face down this disease. Thank you for being here for me. I hope things are going better for both JBG and your hubby. And yes, may 2013 be a better year for all of us. We are READY.

Sandy

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

OMG thank you. I needed to hear this!

 

Judy

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

I am so glad my daughter's story lifted your spirits today. I completely understand because it was the stories like this of others that lifted me in those early days. They brought me out of the state of shock and despair that I was in early on as the mom. And they helped my daughter. And everybody was right - we found our "new normal," and it is doable. Hang in there - there are brighter days ahead.

Sandy

Lovekitties's picture
Lovekitties
Posts: 2952
Joined: Jan 2010

Each and everyone of us needs to find the doctor(s) who beleive they can help us.  I am so very glad that your daughter found hers.

It is wonderful to hear she is doing so well.

May she and all who love her continue to find hope for a long future.

Hugs and love to you all,

Marie who loves kitties

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you so much! Hugs and love right back to you! I've been reading your every post on here (or trying to) and you have such a great perspective, as do so many here. Keeps me sane, for sure! And we are hoping for a long future... when you stop hoping, you might as well give up. I think I've told you before, but I love kitties, too - my 15 year old cat Juliet is sitting here on the table right beside the laptop, hoping for a chance for my hands to leave the keyboard so she can lay on it. She likes the warmth. Thanks again for the well wishes!

Sandy

jen2012
Posts: 1208
Joined: Aug 2012

That is truly an amazing story Sandy! Our little guy was born just before your grandchild...Sept 30...he was a complete surprise and I cant help think he was sent to us as the joy and light in an otherwise dark time. I hope your daughter continues to fight and be well!

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Actually, my grandson was born in August. She was diagnosed 7 weeks later in October. And you are right - they absolutely do provide joy and light through these dark times. I can't imagine having gone through it without him as part of the picture. I'm sure you feel the same. Thank you for the well wishes. I wish your hubby and your family the best in the coming year. Hang in there!

Sandy

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Sandy,

Just wanted to say thank you. Reading your post has put a positive spin on my day. Hope you and your family have a happy and healthy 2013.

Chelsea

janie1
Posts: 753
Joined: Apr 2011

Sandy,

You deserve a lot of credit.....you are a GREAT mother, and friend.  You hung in there.  After what you have been thru, what you have all seen in your personal and professional life, i simply don't know how you did it.

This is so great to hear.  Take care and enjoy what's left of this year, and positive thoughts for the NEW year.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you so much for the compliment! You are a great friend yourself! You've been great support to me. Sometimes we just have no choice but to hang in there and forge ahead, do we? It's hard, but friends here have helped so much. I wish I had more time to spend just posting and responding and being "here" on this site among all of you. You have a great new year yourself!

Sandy

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you! I'm glad to have helped with making your day brighter. I wish you and your family and happy and healthy 2013 as well!

Sandy

annalexandria's picture
annalexandria
Posts: 2263
Joined: Oct 2011

I'm so glad that things are going so well for your daughter.  I can't imagine how hard this must have been for you, watching your "baby" go through such an ordeal.  May the new year bring more good news and good health her (and all of you) when it comes!  Ann Alexandria

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you so much! I am planning for the new year to bring good news for us - for all of us! We just need to make sure that happens! Wishing the best for you as well.

Sandy

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

thank you for your post as we love to read stories like yours'.  i am so happy for all of you. and i love your pic. you look great & your grandson is soooo cute! stay strong!

hugs

judy

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you very much! I love your pic, too - got a real cutie pie there! Trying to stay strong - have to admit that now that she's nearing the last treatment with no treatment for a month before the PET scan, I am scared. Hoping and praying for a miracle, as always.

Sandy

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Thank you for sharing this inspiring story.
I am so happy for your family......
This must have been so frightening
I feel very positive for her!
Barb

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you so much. Yes, it's been very frightening - I know you know, everybody here knows. People who haven't been there don't understand. I am wishing for good news and good health for everybody here in the coming year.

Sandy

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I've told people, especially my children, that my situation could be a lot worse. As I tell them, I'd rather it be me going thru this than them. I can't imagine. You are a saint, and certainly strong. I'm so glad to hear your daughter is doing better. Your story is truly inspiring.

Thank you,

Judy

Annabelle41415's picture
Annabelle41415
Posts: 4275
Joined: Feb 2009

That is such a hopeful story.  So glad that she is doing so much better and now wants to go back to work.  Taking care of a little one is exhausting enough.  Wishing her continued improvement.

Kim

janderson1964's picture
janderson1964
Posts: 1648
Joined: Oct 2011

That is such great news ans such an inspiring story. Thank you for sharing. Oh and tell your daughter that she is a hero to me and other stage IV survivors. Here's to a better 2013 for all of us. Keep fighting and never give up hope.

What doesn't kill us will make us stronger.

Tough times don't last. Tough people do.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you! Everybody with the stamina to battle this disease is a hero. I love your story and the fact that you are here to tell it. I've read it several times and it's one of many that give us hope. You are right - NEVER give up hope. I like your last two lines too. Those are great. Thanks!

Sandy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

thats a wonderful xmas story. It really gives me hope.

I will pray for a clear pet.

hugs,

Pete

ps Jeff I loved these corny over used lines, I used them myself all the time, the more i read them, the more i believe them, thanks.

What doesn't kill us will make us stronger.

Tough times don't last. Tough people do.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you for the prayers. We need them. I'll send up some prayers for you as well, that things will really start looking up for you. And the others here who are struggling with setbacks. Sometimes the corny lines are right on, aren't they??

Sandy

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