June 6, 2012 at 2:08 pm #61824mlepp0416Participant
Welcome to the site that no one really wants to join, but now that you are here you will find a lot of encouragement and people will respond to your questions. Feel free to rant, rave, cry, and post your feelings and concerns about your mom. We will become a part of your family and you and your mom will become a part of our family!
I hope your mom keeps digging in the dirt with her trowel! My husband Tom passed away from CC just under 7 months ago, and I find myself digging in his flower beds and replanting his garden…and that has been very comforting to me. Not a day goes by that I don’t think about him.
Build those memories with your mom, take lots of pictures. Sit and talk with her and spend as much time with her as you can. You will never regret those moments.
Go with God.
MargaretJune 5, 2012 at 11:37 am #61823mmkingParticipant
Thank you all for your kind words and welcome. I will be sure to keep you posted .June 5, 2012 at 12:11 am #61822darlaParticipant
Welcome and thanks for sharing your mom’s story. She sounds like an amazing lady. I wish her and all of you caregivers the best and hope she continues on this path enjoying the planting and summer. Keep us updated as to her progress. Thanks for joining us . Although none of us would ever have wanted to need to be here we are all glad we found this wonderful group of the most helpful, supportive people. Take care.
Lots of love & hugs for your mom and all of you.
DarlaJune 4, 2012 at 7:28 pm #61821gavinModerator
Welcome to the site. Sorry that you had to find us all but i’m glad that you’ve joined in with us here as you will get tons of support and help from everyone here. And thanks as well for sharing your mums story with us, she sounds like a real trooper and fighter!
As to making a diagnosis of CC, this is a very hard cancer to diagnose and in my dads case, it took over 3 weeks for his doctors to make his diagnosis of inoperable CC. His docs also thought that it might be gall stones or gall bladder cancer before finally diagnosing CC. He never had the chemo, he had PDT and he also had the metal stent as well.
Also, no apologies are needed if you feel like writting a book, you go for it! I know that coming here loads helped me so much and I think that it will be good for you as well. Sounds like your mum has a great garden there and I hope that the peas will taste very sweet this year! I don’t have a garden here as I live in a flat, but I do like to grow chillis indoors here and they work well. And yes, it is indeed very therapeutic growing them.
Looking forward to hearing more from you and please keep coming back and let us know how your mum gets on. We are all here for you.
GavinJune 4, 2012 at 7:17 pm #61820mustangmortParticipant
Hey, mmking, looks like you are just up the road from me. Huntsville is not too far from Hooper.
Wow, is all I can say about your mom. What a constitution. I went through 2 1/2 rounds of gemcitabine/cisplatin and it just did a lot of damage and didn’t stop my cancer from growing. I’m jealous :0).
Welcome to this sight and please keep us posted.June 4, 2012 at 4:26 pm #61819lainyParticipant
Dear MMKING, welcome to our extraordinary family but sorry you had to find us. WOW! Your Mom is remarkabley awesome! 89 and going on 25! She is very lucky to have you as a daughter as well. My wish is for her to have a wonderful Summer
free of chemo and with lots of digging! Please do keep us posted on her progress as we truly care. P.S. Could she bottle and sell what gives her that energy?June 4, 2012 at 4:16 pm #6916mmkingParticipant
After spending a few months perusing this thoughtful, wonderfully informative and comforting website, I realize that there are MANY Super Heroes out there, but I will tell you a little about ours. I hope there is not a word limit….. because I’ve just written a book sorry….
My mom was diagnosed with inoperable CC last Dec. 2011 (after starting the process after Thanksgiving ’11) at age 89. Up until then she had amazing strength, health and vitality- playing tennis 1-2 times a week, and keeping up with the 350+ year old New England farmhouse/ land and garden which has been ‘home’ to my family for over 50 years. (5 kids – we all have moved but still call it home
The diagnosis part of this journey was one of the most frustrating and scary times I have ever been through thus far. Now, after listening to one of the great webinars (Dr. Ghassan K. Abou-Alfa) hosted on this site, I do understand that that is how this cancer rolls. Diagnosis often comes through a process of elimination of what it is NOT.
But even still, her diagnosis seemed very blurry to me and my siblings…Starting out with that a Gall Stone might be blocking the duct (negative) to Pancreatic Cancer (negative) to finally CC. Words used like ‘inconclusive’ – to biopsy’s; On the CT scans and MRI’s there was no ‘screaming mass of a tumor (which is good of course) but a thickening of the Bile Duct wall. She had the symptoms of CC- Jaundice and stomach pain etc …. And her tumor markers were very high. CEA was 5.8 versus 2.5 (normal) CA19: was 215 versus 35 (normal) But if they couldn’t really ‘see’ anything….??
So at some point we had to put our faith in the good Dr’s diagnosis (at Brigham Womans/ Faulkner/Dana Farber group so I have to believe they are GOOD)
Surgery was not an option- #1- my mom wouldn’t have agreed to it even if it was available, and #2- there was some slight portal vein involvement. This made it not an option.
My mom did agree to try Chemo, and a Gemsitabine/ Cistoplatin were prescribed. Starting in February, scheduled once a week for 2 weeks then a week off, – for 9-12 weeks of treatments.
In the meantime my mom had the plastic stent replaced with a metal one. She as feeling pretty crappy, no appetite and it was even hard for her to drink fluids. Feeling poorly for my mom means she did not leave the house a lot. She still, got up, got dressed and at very least went the motions of a normal day.
Once she began Chemo, it was a bit of a relief- in more ways than one. We were finally doing something about this cancer! And, crazily enough, the Chemo provided relief to my mom’s discomfort/pain she was having. (Palliative I guess, is the term)
When my mom started Chemo we all did not know what to expect. We set up rotations with us kids staying with her, taking her to chemo, and being there for days after. We expected that she would really feel some bad effects in the immediate days after treatment. But thanks to steroids-days 1-3 after are some of her best! The whole process took time to evolve into somewhat of a pattern that we could pin down as to how she would feel. However, the saying One Day at a Time takes on some serious meaning. One of the most heart wrenching moments for me was when my mom, after maybe the first or second week of chemo, said to me that she ‘didn’t understand why she was feeling worse more days out from chemo than closer to the treatment. Hearing the uncertainty, confusion and frustration in her voice just made me want to crumple up and cry….. (At 89 my mom is not one to go surfing the net for answers, or ask a lot of questions… she is very much of the Pull up your Boot Straps school.
We have been so very lucky with how my mom is handling Chemo. Side Effects were fairly minimal- probably the worst was loss of appetite. Trying to figure out what appeals to her palate was challenging….. Food and cooking is a big part of my family…. Thanks God we have managed to keep it still appealing, and on good days over the winter my mom was cooking up a storm. Learning how to manage the fatigue associated with Chemo was also a challenge for her. . My mom was not one for naps- EVER. Only really really really sick people take naps She has finally, after being scolded by the team of Chemo nurses- will now go ‘put her feet up and rest’ (for about a minute) when she is tired.
Spring has brought many good things to this journey. Gardening is a passion for my family and mom is at it with a vengeance. All of us kids have helped get her garden going when we are visiting, and it has been very therapeutic for her, to be able to look forward to see what is growing, and digging in the dirt. She just discovered that the peas we planted in march (early, thanks to the unseasonably warm weather in N.E) have some pods! We all have gardens at our own homes and it great to be able to share our gardening progress with each other. I highly recommend everyone planting some sort of garden – whether you are a CC fighter or family/caregiver!
Also, she had her ‘Chemo progress’ check in April and the results were good! (But again blurry in my mind) There were no visible changes on the image scans. Nothing New, no obvious massing, and all her counts were good. (Her counts have been normal the whole time, with exception of slight lower red cell, but no transfusion ever needed) Tumor markers lower – I don’t have the exact numbers, And her Dr’s put little emphasis on the marker readings, which we find frustrating, but….)
For the last 4 chemo treatments, Dr. amended her schedule to one treatment every other week- (she had her last of the full 12 sessions, on June 1) and if a second check up on June 15th remains the same- she will be off Chemo for the summer….. And hopefully a lot longer.
The unknown is scary to me…. But all in all, my mom has gone through this thus far like a Super Hero. Who knew that Super Woman wielded a trowel and was 89??
I know that this journey is not over for any of us, but as we all travel down the path, I hope that everyone can enjoy some of what the Garden of Life has to offer. Go dig in the dirt…. It feels great!
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