Decision #2 has evolved since I first began to write this but I am going to include the history here, which will explain part of the solution to decision #1.
After my mastectomy, my tumors were tested for the genetic probability of cancer recurrence. Mine came back in the medium range, but in the highest part of medium - just a hair away from high probability. Because of this my oncologist recommended two forms of treatment - one was a 3 course plan of oral chemo, and the other was a 5 year treatment of medication to kill all the estrogen in my body (since mine was an estrogen triggered cancer)
By the end of the first course of chemo I was so violently ill that I decided not to continue with it. And my doctor was okay with that decision. When I had my original surgery all my nodes were clear and the assumption made that I had caught the cancer before it spread. The chemo, he said, was just another strategy to try to decrease the chances of recurrence - which is what all cancer treatment is - a crap shoot.
I have been on the estrogen killers for almost two years now. When I first started them I had unbelievable hot flashes and night sweats, but within a few months they settled down to a manageable level. However, joint pain began steadily increasing. And when I had my last bone density scan, I learned that I have lost almost 15% of the density in my spine in just over one year. This freaked me out. Today my joints ache so much I have difficulty getting out of bed. Once I start moving, it does get better, but there are times when the pain has brought me to tears. I do not like living like this. (and yes, I am well aware that I am whining)
And so decision #2, was whether or not to continue with these meds. For me it was a choice between lowering the possibility of cancer recurrence and being able to live a physically active life and enjoy right now. Martha, of course, is all for anything I can do to prevent further cancer. It is why she is against the reconstruction (she thinks it will trigger or mask new cancers) and all for any meds that make my chances better, no matter how sick they make me. She has been deeply impacted by cancer, so I get that. Both my family doctor and my oncologist that I should stay on the meds, but they are not feeling what I am feeling. And I wasn’t expecting the blogosphere to answer this question for me either - but writing out the decision process seems to help clarify it.
Now the update - after coming back from a tropical vacation and looking at pictures of me topless and in bathing suits, etc. I have (sort of) decided to do the reconstruction. I think much of this decision has to do with my general theme of wanting to feel whole again. Mostly, that is an emotional wholeness, but it is hard to feel whole when there are body parts so obviously missing. I am still wavering on this one but I have a surgery date set on January 30th, so I have up till then to change my mind. In exchange for Martha’s blessing on reconstruction, I have committed to stay on the estrogen killers. . . at least until my next bone density scan. I will deal with my joints feeling like I’m 90 and try to fight the lethargy and slight depression that the pain has created. But we have both agreed that if I continue to lose bone mass at such an alarming rate, the cure might be worse than the disease.
So that’s where I am on at. The next decision will be more fun . . . retirement !?!?!?
Those are hard decisons to make. I don't envy you that! Sounds like you had a great vacation and visit with family and friends over the holidays. I like your house post and those are some lofty goals, but as you said you can do more than you think you can... I hope 2014 is a great year for you and your family...
ReplyDeleteThank you. I do believe that 2014 will be a great year. Best wishes to you and yours.
DeleteI don't envy your choices, but for what's its worth, I think you are making the right ones.
ReplyDeleteThanks. Some things you just never know without hindsight. But I am hopeful.
DeleteI hate cancer. I don't hate much, but I hate cancer. I hate that this cancer, and the fear of its recurrence, are making you suffer.
ReplyDeleteI'm very much looking forward to the next decision! Retirement, woo hoo!!!!!
xoxoxo
For as much as I hate cancer too, I have to admit that it has given me a certain focus on life that I didn't have before. Which is definitely adding to the retirement decision : )
DeleteOkay, third time is the charm. (Blogger keeps eating my comments.) Since I'm not a doctor and can't give medical advice, I'm going to go a different direction with this.
ReplyDeleteI'm going to start with surgery. I think that there are two times in life you have to be 100%: about getting married and surgery. (Unless it's life-saving, obviously.) You don't sound 100%, so if it were me, I'd put it off until I was clear about why I had some hesitations and felt I had nothing at all that was making me question doing it. Because, you know, surgery.
As far as the other, it doesn't sound like you have near enough information. I think, as exhausting as it sounds, that you need to know more about what this decision could mean and how it could fall. I think I would stay on course while I did more research, frankly. I can think of a dozen things that go in to this, truly. So I think it's way too early to make this choice.
Otherwise, I'm right there with e. (I do have some ideas about retirement. Ha!)
I hear what you are saying. But I don't think I have ever been 100% about any major decision in my life and so far, I'm batting 1000. Martha, kids, job . . . all have worked out quite swimmingly.
DeleteAs far as the other, I am going to tough it out for a while longer. And I am looking forward to hearing your ideas about retirement.
I agree. Those are super great decisions, every one!
DeleteI'm with e I hate cancer. I can't imagine igong through even half of what you've been through and more, what you have to face.
ReplyDeleteI wish for you good health and a good outlook for the future. Be sure. Be as safe as you can possibly be.
My thoughts are with you. Always.
Thank you so much for your good thoughts and wishes. They do help me over the rough spots.
DeleteI have a double mastectomy scheduled for the beginning of February and was referred to your blog by a friend. I am having reconstruction and the tissue expanders will be placed at the time of the mastectomy. Based on the biopsy it has also been recommended that I take aromatase inhibitors.
ReplyDeleteI have been so encouraged by your surgery experience and recovery and I wanted to thank you for your honest sharing of the other negative effects. I feel like I am going into this much more educated and confident.
Thank you so much for commenting for for your kind comments.
DeleteIf you'd like, please email at 8thdayplanner@gmail.com. I could share some things that really helped me get through both the physical and emotional hurdles, especially right after the surgery. I would love to chat and wish you well more personally.
8, you probably know I didn't know you've been through this and are still in it. Count me as someone else who despises cancer and willing says fuck fuck fuck in defiance of it
ReplyDeleteIt sounds to me like you and Martha are thoughtful and aware. That is enough. I understand about the body image part. It's important we do what we can to feel good about ourselves
I lost a blog friend named Renee to cancer. She was a remarkable woman, Quite remarkable. Her blog was 'circling my head' and you can find it at the bottom of my sidebar. Why would I mention someone to you who died? Because she and her blog and her ways are still remarkable
I am rooting for you, guaranteed
Love
kj
I very rarely drop the f bomb, but am very happy to say FUCK CANCER. And with feeling. It has taken so many people from my world and I am sorry to hear that you too have suffered a loss.
DeleteThanks for rooting for me. It means more than you know.
We have much in common. My cancer was a different kind but cancer is cancer. It scares the hell out of you. And everyone around you. And I firmly believe that ALL decisions are to be made by the patient, NEVER the doctor. I also have rheumatoid arthritis, so I understand so well about your joint pain. I, too, can hardly arise in the morning because of stiffness. Some days, I can't get my fingers to hold a toothbrush. And, like you, the pain gets better as the day goes on. But...boy howdy, this spell of cold weather has left me almost breathless with pain some days. I am glad you made the decisions that worked best for you. I tell my physicians ALL THE TIME that I am the one who lives in this body and I will be the one deciding what or what not to take.
ReplyDeleteWill you come with me to my next doctor's appointment?
DeleteMy pain is mostly in my knees, hips and elbows. So much so that I often can't stand up out of a chair or take clothes off over my head. And to add insult to injury, I am told to do more weight bearing exercises to help with the loss of bone density. Although, I have to admit, if I can get myself to the gym, it does help with the pain in the long run.
So yes, cancer sucks - but at least I'm not dealing with school athletics at the same time : )