Keeping busy helps but I can't do that all the time. I keep going over everything that happened the last few months in my mind, wondering if we could have done things differently. What if we had made different decisions? What if Adrienne didn't go to summer school? What if we tried another HDAC inhibitor (we were so afraid after MGCD)? What if she did more aggressive chemo in the summer? What if? What if? I don't know if I'll ever not feel guilty. We all wanted Adrienne to have a normal life after so much insanity, to not be a patient, to date and work and go to school, things she missed out on way too much. We really thought we could manage this. Adrienne knew her scans were bad the last few months but I never told her how bad, because I didn't want her to worry, I didn't want her to be scared.
I went to the Compassionate Friends meeting last night and it was a much smaller crowd, which was nice. We talked about the upcoming holidays and how we were going to deal with that. I don't think I'm especially worried and we're doing things differently this year...we'll get through it. In mid-December, we're going to Cabo for a week. We have a timeshare there that we haven't been able to use in a long time, so we'll try to use it regularly again. If anyone is interested in going with me in the spring, let me know.
Several people have mentioned upcoming trips to Las Vegas. Please, let me know when you'll be here. We enjoy having visitors and showing people around, and we have plenty of room here at our house. Don't be shy. Think of it as keeping me busy.
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13 comments:
You once said in response to one of my posts on the board that (if I may paraphrase)you had no regrets about past treatment decisions as you both always made the best decision possible with the information and options available at the time and they can't be changed now. Even as an outsider to your daily lives I believe that to be true. You both were extremely knowledgeable about this disease. It was not a decision of yours or Adriennes' that took her precious life, it was this horrendous disease! Hate cancer and blame it all you want, but please never look at yourself, you did everything you could to fight for your daughter. I can only wish that, should it become necessary, my mother would be capable of achieving even half of what you did in the fight for your daughters life.
Good to hear you have a plan for the Holiday's and were able to have a good talk with the group. Hoping Cabo is just beautiful for you!
Bonnie
Hi Alison.
I think about you every day and hope that things get a little easier. I know that losing a parent is very different than losing a child. But the best advice I was given was try not to think about the what ifs as far as I could see Adrienne lived as normal a life and to the fullest because of you. Know that I am always thinking of you guys.
Take care Love Marla Zamczyk
You have an incredibly level head and heart, and I can only imagine what an enormous blessing that was for Adrienne, what comfort. I think of her and of you and I come here to check on you.
The truth is that you did everything you could for Adrienne: you seeked the opinion of the best doctors in the country and made information-based decisions all along. At one point, the disease became more resistant and more aggressive chemo regimens might have done more harm than good.
You did everything that was humanly possible to save Adrienne.
Thinking of you,
Anatole
Dearest Alison,
Thank you for continuing to share with us here on the blog.
I am sorry that you are doubting some of the decisions that were made over the last few months. Sort of re-running everything through your mind and wondering what would have happened if different decisions were made.
You made the best decisions with the information you had at the time. If different decisions were made, Adrienne may have had worse side effects and/or you very well may have lost her sooner. Alison, you can rest assured that the decisions you made were the right ones. It's normal to question it, but please know in your heart that you did everything you could.
It is beautiful that you always had Adrienne's best interests in mind. Not just her physical health, but also her mental health. You made every effort to allow her to live a normal life and to enjoy the experiences that her peers experienced. Protecting her from the extent of her disease in the last few months highlights the compassion you felt for Adrienne. What an amazing mom!
Holidays and a trip will do your heart good. Enjoy.
A Mom (in Texas)
The what ifs are so hard . . . I've struggled so much with all sorts of scenarios playing and replaying in my head. And, that is what it is . . . a fantasy of what ifs that aren't real.
You did what you had to do for Adrienne with the information you had based on what she wanted. Hold onto that reality, and let those fantasy what ifs go.
I give this advice knowing that words don't make it happen, but know that you are not alone, that others have travelled this path too.
I'm further along than you, and I feel like I need to send out a beacon telling you that you will survive this. I couldn't have imagined I'd have the calm and the comfort I have now when I was where you are now.
Karen, Clare's mom
Sorry, Sandy, I rejected your comment by accident. Here it is. Thank you. I love you.
Hi Alison,
I think it's "normal" to have doubts about decisions that we make. "What ifs" will probably float in and out of your mind as you go back and think about everything. Just remember that you did do the best that you could; you always have! It's because of THAT fact that Adrienne lived until she was 22 years old, my friend. Additionally, she lived a life full of wonderful opportunities... again, because you made the best decisions for her AND with her. :-)
Sending you and your family lots of love for the holidays and... one of these days, I'm going to take you up on the offer you made to come out and visit! ;-)
Love you,
Sandy
Alison,
I would like to echo what Bonnie and Sandy said. You did everything you could - and more.
Much love,
Julie (beightler68)
Hi Alison,
I mentioned on the Lymphoma board that my husband and I would be in Henderson this Fall. We decided to put it off when it was discovered we would be going to Los Angeles for Christmas. We plan to leave Idaho and drive down there. We have friends in Henderson and plan to stay there a few days. Perhaps, I may be able to meet up with you while we are there. You said you may be in Cabo though. We'll be down around the 17th - 20th. PM me on the lymphoma site if it's doable.
I love what Bonnie and the other posters have said! You are such an amazing woman, Alison, in so many ways. I'm glad you're going to Cabo and hope you will have a good chance to relax and reflect. Hopefully, we'll make it to Vegas one of these days, although I wouldn't impose on you--at least not until Tyler's past the hyperactive stage! :) Hugs to you, Curt, and the pups. Janet
Hi Alison,
No one could have wished for a better mom, advocate and friend than you were to Adrienne. You know, when I read Becky's beautiful post you directed us too about her brief but close relationship with Adrienne, my thoughts were "how wonderful that Adrienne was able to live such a normal life with all the challenges she faced" .... her comments about her student life, her dating (the babe) and her friendships and interests. A remarkable young woman with a remarkable mom who gave it all .. and more. It was lovely to see you here and hoping we can catch up first weekend in Dec. Will I call you? Arriving Sat around lunchtime and leaving Monday evening.
Much love Penny
Oh gosh - I could have written this post. The what if's go on and on, don't they? I used to think that if Eric had had BEACOPP as a first line treatment that he would have been cured. With what I know now about his marrow and disease, BEACOPP probably would have killed his marrow and him. But I still think of it.
Adrienne was able to graduate, date, travel - all because of the careful treatments and decisions you both made through the years. I just wish there were more of those years.
Hugs,
Kathy
Being thankful for our friendship over the past couple of years...and looking forward to meeting again soon for a long chat and some real ((HUGS)).
Love,
Susan
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