Starting Chemo March 2015

I'm so sorry Amber. You have been through so much! We're all here for you. This year has just begun and it can and will be a better year!

PB

Sorry Amber...my mom says some pretty stupid stuff too and it hurts. But, your mom doesn't define you or who you are. Feel free to come rant here anytime! We love you no matter what ailments pop up

Sharon, I hope you're doing better!

Today it is one year since my biopsy and I just had a coworker ask me if I have considered megadoses of Vitamin C to treat my cancer. Sigghhhhhhhhh.

Italy and molly - you forgot the asparagus.

amber - sorry about the hip, hoping you get some relief soon.

For those struggling with cancerversaries - keep your chin up, eventually it will just be a day like any other - don't give it the power to bring you down.

I told him I thought the $400,000 worth of drugs pumped into my body were probably more effective than vitamins. But what does my oncologist know!

I think ti would be funny to reply that you tried that but it made you shot yourself, so you opted for chemo instead. Just to see a reaction. I could say that to my coworkers, but they're all men, so shit is a common topic of their conversation.

Amber! I'm so glad to "see" you! We are here for you and each other no matter what. Sometimes I'm here to offer support, sometimes I'm here because I need support.

T - your response to Amber's post made me cry. The bond we all have people don't necessarily get because we haven't "met" - as though a once a week in person group circle where I never would've shared the story of shitting myself 40 min into a 5 h flight - could ever compare to what we are and have been for each other. Please everyone say yes to early June at the lake.

So glad to hear from you Amber! I'm sorry your mom just doesnt get it and it is absolutely awful for her to say those things. We are here for you so please visit when you can. I keep coming back to the board because I know you all understand. And Theresa's right, we have all been supportive and supported here. A bond no one will understand.

The cancerversary is hard then I thought too Sue. I'm sure everyday will get better but sometimes it's overwhelming. My dad called me tonight to say he remembered and that he was very proud of me. He also told me that windshields are large for a reason and we only have a little tiny window in the back. We should always be looking forward and only glancing back. This first year is hard but I'm determined to make each day better So I keep going and so does life around me.

Sharon, I've been thinking of you. I'm sorry you are at work and feeling awful. Hugs!

Eileen, hugs, you made me cry cuz you cried. I will definitely be there in June.

Avmom I have no words for what you are going through mentally and emotionally. On days I get down, I go get my grandkids which is bittersweet. They lift me up, but then I also want to cry because I want to be here to see them become adults, watching and being in their lives every step of the way. Those sweet little faces! And I don't know if I will get that chance. They give me the strength to be stubborn and never back down, to push as hard as I can to get through the fears and anxiety. Then I wonder if I die when they are young, will they remember me and all the silly times we had together? Like yesterday we did a food picnic in bed, watching Disney, will they remember? So I cram as much as I can into every day, trying to make as many memories as possible. I will fight every step of the way to try to be here to watch them grow.

Damn, sometimes I get sappy, sorry!

Avmon, I am sorry you are so down. If you had DCIS and LCIS that was ER+, I wonder if anti-estrogen therapy would be worthwhile for you? Obviously, if so, your MO would have prescribed it.

Let's look forward to the day when cancer isn't in our every-minute thoughts and is more a bad memory. Until then (and even after), I count my blessings I have you all to count on for support.

Theresa and Sue, thanks for your warm thoughts. I'm not "down" all of the time, but it is hard to adjust to having to live in a way where there are no familiar activities that you can do "naturally", but where everything requires a concentrated effort. I'm still longing for things large and small, though I am hopeful that at least some of it will get easier. I think that the brain fog is lifting, slowly, which would be a major help. The loss of the simple pleasure of reading has been hard. Before surgery and chemo, I was a world class reader, with at least two books on the go at a time. I got a lot of mental stimulation just from being able to absorb large quantities of written material, and I sampled a large array of material. When reading "light" material like fiction, it was like watching film. I could immerse myself in the story, so much that I would only be vaguely aware that I was reading, rather than watching a movie. That would kick in only if I concentrated fully, and when I was reading very fast - often 150 pages an hour, or more. Paradoxically, even going through the written word at a very fast pace, I was always able to go back and find any specific quotation if I wanted to refer back to it. It worked best with paper books, so it was a combination of visual and physical memory. I would be able to find things partly because I "knew" about how far into the book my target was (like maybe 100 pages in, I think because of how thick the pages were under my thumb), what side of the page, in the middle paragraph, beginning or end of the paragraph, etc. It was a gift, really. Since chemo, I have a hard time reading more than a few pages at a time, and at a very reduced speed. Makes it much less fun, and needs much more conscious effort.

I know that I have much to be thankful for, and I am still hopeful that things will continue to improve. This week has been tough, as my neuropathy seems to be going backwards. My feet have been much worse for the past two days, making walking harder, and keeping me awake at night. Grrrr!

Theresa, the sappy stuff can be great. My sister has one grand baby, who will be turning two in April. He is wonderful, and she lives very close by, and gets to see him often. What a treat, but I sure get the bittersweet feeling. Being privileged to spend time with the very young gives both a shot of the wonder and newness of the world, but it reminds us to reflect on those we knew when we were young ourselves, and to put ourselves in the position of older loved ones who are gone now. How much would they recognize of themselves in our memories of them? What memories will the current "littles" have of us in the years to come? Grand babies would be lovely, but please, not yet! Our son is just 22, and is still finding his way. He is nowhere near ready to be a parent! However, today was his first day working at his dream fine dining restaurant, and it seems to have gone all right.(he is living here for now). Being the newbie can be intimidating. Time will tell.

Sue, I know what you mean about maybe doing endocrine therapy for the ER/PR+ in situ carcinoma. My situation was sufficiently unusual, with all of the different pathology (four different carcinomas, TN IDC, TN DCIS, ER/PR+ DCIS and ER/PR+ LCIS-some triple negative, some ER/PR positive, all there at the same time, and in both breasts) including the in situ stuff that was found only with the "prophylactic" mastectomy (nothing on mammo or ultrasound; no palpable lump) that all of my samples were reviewed by a second pathology group, and considered at a multidisciplinary Tumor review. The consensus was to not recommend any endocrine treatment, so no Tamoxifen or AI. At least, I don't have to worry about more side effects! It does make me wonder about my body's efficiency at producing carcinoma.

I am saving up some questions for my MO, though. I was looking up a few things so I could talk to my newly diagnosed friend, and right at the moment I am concerned about the lymph nodes on my left side. I had a total mastectomy, but because it was "certain" that the mx was prophylactic, no marking or sampling of sentinel nodes was done. Had they known about the DCIS and LCIS, it looks like it would have been standard of care to mark and sample at least one sentinel node. Now that the mx is done, no sentinel node sampling can be done, and I don't think any specific surveillance of the nodes on that side has been contemplated or scheduled. I don't feel that's urgent enough for a specific appointment, but I need to keep that on the list to discuss after my next thyroid ultrasound. I had to have two thyroid biopsies done last year as part of my staging investigations, but the ultimate finding was that the thyroid nodules that showed up were benign. They do need to be monitored, though, and I received notice in the mail of an appointment later this spring for a follow up ultrasound. One tough thing about these cancerversaries, they trigger the next round of tests and exams. Maybe that's just highlighted the uncertainties of all of this to me, so I'm more anxious. I'm not sure of anything much, these days.

Ah, it's just about 4:30. Time to give up on any more sleep, and go fix a cup of coffee.

Hugs to all.

AVmom, People would never come to someone's hospital room after a stroke, or a devastating crash, or a diagnosis of COPD, or a heart attack and expect them to have their happy face on 24-7. Yet somehow people "expect" that of cancer patients, even though the side effects of their treatments are often 100 times worse. I think it's because people fear cancer so much that when they see the "happy face," it makes THEM feel better. When I would update my caringbridge site, I was always honest. I usually felt good and posted as such, but I was brutally honest about the tough times too, and I can't tell you how many friends who've dealt with cancer wrote to me to tell me they appreciated me keeping it real and letting people know that it's not all sunshine and rainbows. I do think you have some good questions for your MO.

Eileen, I also like that you said something to your coworker. I have been much more assertive at replying to comments like that now as well.

Thanks for that, sloth. This really rung true for me: "I wasn't suicidal, but I just didn't want to be," Kaminski said. "I didn't want to be me. I didn't want any of this."

Sloth- that was a great article. Thanks for sharing it. So much of it felt like someone had looked right into my head. I definitely related to the description of the moment where one just "shuts down". That happened for me a couple of months ago. I have felt frozen. The time of year has not been conducive to movement, but mostly it has just been almost a complete lack of caring what the outcome of all of this is. Life, that is. I am working with my shrink to deal with this. I am journaling, attempting to incorporate more mindfulness. I have not been exactly suicidal. More like just beyond caring in a completely passive way. My best hope is that I have been very depressed before, and has always given way to a kind of happiness again. Sometimes it has taken a very long time. Though medicaction and therapy have always been a part of the recipe, there has never been a fixed time where the remedy has resulted in my extraction from the rabbit hole. In the meantime, I hang onto this sliver of hope, and try to force myself to take Jack to as many therapy visits as possible. That always helps a little, and sometimes it gets so basic as to just try to string a couple of reasonably acceptable hours together.

Avmom- I used to be a voracious reader also. It was a great escape and stimulation just exactly like you described, though I doubt I ever came close to reading that fast. It is a daily, sometimes even hourly challenge to adjust to how different life is now, physically and mentally/emotionally. I feel like I have done a very bad job at "pushing" myself to return to normal activities. I miss reading so much.

On the medical front, I have been on the AI for a little over a week now. So far, tolerable. But it's early yet.

I know I don't have to apologize for the above, but I am very grateful for having a place to let it out.

Thank you all.

Hugs

Katy: I think it is great that you can realize you have been through hard times and felt happy again after.

I think there has got to be an element of loss of control contributing to depression. And cancer has got to be the ultimate loss of control.