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December 6, 2012 at 10:05 pm #20832jeffbGuest
Just checking up on everyone.
Me? Up and down, sad sometimes. It’s just not going to be the same but it’s really nice to be around family. Feels more special to me now.
Hoping you have a Merry Christmas.
JeffDecember 7, 2012 at 1:28 am #57922
Thanks Jeff, wishing you the same. I hope others will answer you as well. I know it is difficult. Although I lost my parents a few years ago, the holidays are always a tough time that I think about them and keep them close to my heart. Here’s hoping you have more ups than downs..December 8, 2012 at 4:17 pm #57923DadZGirlParticipant Looking forward to time with family and just enjoying being together.
Spending a lot of time reflecting and thinking about people here that are missing a family member this year. Good times, hard times, but times of togetherness.
I usually procrastinate, kind of on purpose, and get tangled up in one great heave just before Christmas to wrap and decorate and cook. But this year I am much more planful, more methodical and I think more thoughtful focused more on family time and atmosphere than gifts and the rush of it all. Actually wrapping a few little things today and just hanging out with Dad. He’s so fatigued these days, says he is not having any pain, just kind of wiped out. Mostly I am just so glad he is still here with us.
Sending hugs to Jeff, Bettina, Susan in Spokane, our dear Pati, Catherine, Sylvia and Amy and everyone else on this forum. Prayers to all for Peace and Comfort.
LauraDecember 8, 2012 at 6:53 pm #57924msue5Participant
I wish all the caregivers on this forum good holiday’s filled with good memories and peace. My best friend’s husband was recently diagnosed with AML. He is in remission now but she said she is waiting for the next bad outcome. She gives me a perspective on what its like to be the caregiver and I give her my perspective as the patient. It helps me know what its like to be in my husbands place. My emotions are from one extreme to the other and I am sure he never knows what he’s coming home to. My daughter is expecting a baby any day now and I went to the grocery store upbeat and returned a blubbery mess. I had gotten a text from my daughter giving the latest update on her check up and this picture ran through my mind of my daughter holding a toddler thinking “I wish my mother could be here to see her now”. I started crying and sat in the car at the store for 1/2 hr crying. Just an insight for the caregivers who I think have the toughest job of all. They are usually afraid to show their sadness and anger in fear of upsetting their loved one.
Mary SueDecember 11, 2012 at 1:43 am #57925abdormaParticipant
You are so good about staying connected with the folks on this forum!
My husband Tom got what we thought was great news at his last PET scan a week ago — has one spot that is slightly bigger than it was last time in his left armpit (the left chest area is where his melanoma is most fond of) but the other two spots that were in his peripancreatic region are gone. Oncologist said if the armpit node is still glowing at the end of January, perhaps they will take it out. His Zelboraf side effects have GREATLY reduced which is really good news. We went to a holiday party over the weekend and had the neighbors over last night for pot roast in a giant snowstorm. We haven’t lived this socially for months and it feels really good. More importantly, we are preparing for family arriving and will be able to be with both our families this holiday which rarely happens. A year ago, we were getting bad news about Tom’s PET scan, subsequent bronchascopy and biopsy and found out on Dec 22nd, that he had his first official “met” and surgery scheduled for the first of the year. This year, we are just so grateful that he is doing this well and can celebrate knowing that there is not a darn thing we can do about anything except enjoy the gift of feeling good and being with the people that we love.
That said, I do think of so many of the caregivers on this forum this year who will be spending the holidays without their spouse/partner for the first time and pray and hope that they are surrounded by people who love them and are remembering holidays of the past. You are so reminded of who isn’t with you at this time of year. I truly hope that all of you are at peace and find comfort with your friends and family this season.
annDecember 11, 2012 at 6:32 am #57926janibraskasParticipant
Thinking of you all. Prayers to you that peace, love, good memories, new memories come your way during this holiday.December 12, 2012 at 6:47 pm #57927dkmcParticipant Thinking about all of “my people” here on the forum…the ones who we have lost, the ones who keep on fighting this disease and the ones who love them. Don’s MRI of brian was clear & no melanoma on cervical spine MRI except changes probably due to his extensive neck surgeries & radiation. Next month on to a neurosurgeon to see if we need to do something about the impingement of brachial nerve by all this scar tissue. (very doubful due to melanoma per scan but possible) Sooo after holidays we will jump back in with PET, neck surgeon vist & oncologist in addition to the neurosurgeon…BUT today we will just enjoy life. Haha what a Christmas letter we are sending out this year, actually 2 years worth of news since last year was so stressed I did not even send cards much less a letter! Truthfully just really really savoring this holiday season. Much love to all, KarenDecember 22, 2012 at 1:31 pm #57928PatWParticipant I am ashamed to admit it, but I am having a really hard time feeling merry. On the one hand, I feel that I should be grateful and optimistic. My brother (Stage IV with brain mets for 6 months) responded well to WBR and Zelboraf and is doing well. We were originally told not to hope for much beyond September, so we are very thankful for these effective treatments. On the other hand, he recently became resistant to Z (one new lung tumor). So he’s off Z and waiting to start ipi in January.
We will be going from Atlanta to Tampa to visit him next week. I look forward to the visit. I just wish it wasn’t Christmas! For the last several weeks, the vast majority of my time and emotion has gone to researching ipi, researching clinical trials, fighting with his home hospice nurse to get his meds straightened out, wondering how fast his tumors are growing now, etc. etc. I want to be in Tampa to enjoy a visit with him and to help him negotiate all these decisions he has to make now. But I just can’t summon up the holiday cheer I usually have when I shop, wrap, decorate, sing carols, etc. I feel that I SHOULD be focusing on the positive. I SHOULD savor this “extra Christmas” we have been granted. But I can’t. I’m putting the best face on things that I can manage, but I really wish that Christmas would just go away!
Thanks for letting me vent.December 22, 2012 at 3:40 pm #57929
So much of what is behind Christmas in our society is the commercial end I worry. It ignores the other religions in our country too. So you know what, you have to feel what you feel. I get distressed this time of year about the pressure it puts on people. Not just those having a huge issue such as illness to face but the dysfunction of famiiles thrown together into a toxic cocktail for the holidays. But your family sounds like a loving one and that is fortunate. (I might throw in that PD1 might be an option to seek for your brother too, with potentially a higher response rate.)
Also, please watch our webinar by our excellent psychologist, B. Janet Hibbs on Blue Christmas:
for helpful tips. Your brother is fortunate to have you looking out for him! take care of you too!December 22, 2012 at 9:52 pm #57930PatWParticipant
Thank you for your advice, Catherine, and for the link to Dr. Hibbs’ webinar. It was very helpful.
I probably should stop pressuring myself to make everything “happy, happy, happy!” While no one in the family wants our lives to revolve around melanoma, it is also folly to try to pretend it isn’t there and that things should be “normal”. After watching the webinar I am going to focus on having a nice visit–period. With a little Christmas cheer thrown in, too. Not the other way around. And Dr. Hibbs made the good point that my brother himself has little energy and probably little patience for hustle and bustle and constant chatter. A low-key celebration would probably please him best.
And, yes, we would prefer a PD-1 trial and will be meeting with Moffitt doctors next week to discuss possibilities. Ipi is our fall back position. Thanks for the suggestion.December 23, 2012 at 4:49 am #57931zephyr66Participant
really nice of you to check in and it’s good to read about how others are doing. i’m up and down as you are. i try really hard to be happy about the holidays as it’s always a time i’m so upbeat and it reminds me of being a kid. but, i’m sorely reminded how i’m no kid any longer and how life has changed. i’m pretty tired. i’ve been cargiving now about a year and a half and i work full time and i’m just so tired. but, i do get happy as this year is a lot better than last year and amy has even been able to go out shopping with me some. she just had her 4th infusion for IPI (reinduction). and, our tree is pretty as are the presents underneath. so, yep, up and down. but i’m sure trying to keep a good attitude and stay positive!
sylviaDecember 25, 2012 at 2:56 pm #57932buffcodyParticipant
Merry Christmas, Jeff. Hope you are gladdened by knowing that your posts and emails exchanged brightened my Christmas day and the season generally. My wish these are your feelings as well amid the other ones. I’ve had a hiccup the past week when a supposedly innocent back scan brought up a “suspicious” finding, but I’m putting in on the back burner of mind and heart the rest of the week till my next infusion/appointment.December 27, 2012 at 9:10 pm #57933AnonymousGuest And a Merry Christmas and Happy New Year to you Frank and everyone else and thanks for the kind words.
Sorry to hear about a “suspicious” finding. What is a “back scan”? Do you mean the spine? Bone tumors are a bit more difficult to spot sometimes, even on PET, as the disease diffuses into the bone instead of forming a solid lump. If it is, don’t worry too much as any disease there can be easily zapped with radiation and that may actually help with the effectiveness of the IPI. But let’s not jump to conclusions. But I can recommend continuing to position yourself for PD1 and/or TIL. Always have that back-up plan ready to go if needed (and I’m betting it won’t be needed).
Is this your last infusion? How are you doing with it? What’s your ALC trend and any new white and/or clear hair?
JeffJanuary 14, 2013 at 2:34 pm #57934AnonymousGuest
Well, I made it through Christmas and News Years Eve “OK”. Actually New Years Eve was the roughest but by choice. I had several invites from friends but I was not in exactly what I would call a festive mood, so I politely (at least I think I was polite) declined and they understood. I also wanted to take being alone then as a personal challenge to see how I’d do. And I did “OK”.
My prayers to all you caregivers and your loved ones out there for this coming year. You guys are in the trenches too. Remember, there is no better way to honor Him than by giving part of your life for another.
JeffJanuary 14, 2013 at 6:19 pm #57935
New Years Eve/Day are very rough days for me, some years more than others. My dad and my horse died on New Year’s past. Just a tough time. I am reading this book right now I am enjoying immensely: Help, Thanks and Wow (three things to pray for) by Anne Lamott. It has some interesting thoughts about dealing with loss, etc..
Take good care Jeff.
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