Saturday, June 26, 2010

Plans Change 6/26/2010

Hello on this fine Saturday!

We know with this invader that nothing can be easily planned or considered the final word. All parts of this equation are moving at all times. And, what was to be a few tests, some doc appointments and starting chemo last week has been re-ordered.

After surgery (6/11/10) I left the hospital with three drains in place. Two were removed at my one week check-up and I came home with one. The drains are in place to remove excess fluid as swelling and other surgical injuries heal. The volume of drainage has to be below 30 ml in 24 hours for a drain to come out. The third drain is still significantly above that level and it couldn't be removed on Friday as anticipated. It's somewhat of a risk for infection and other complications to start chemo with an open drain in place, so the chemo has been postponed. We're hoping that the drain can be removed next week. Right now, I'm scheduled for chemo starting on 7/12/10.

We're home again...hooray! Our pets are pretty cling-y. They don't know what's up, just that we're gone a lot lately. Plans for today are to watch tennis (Wimbledon), watch World Cup soccer, unpack, walk the dogs, rest, the idea? Being lazy is high on both of our lists this weekend.

Many thanks to all of you for the good wishes, love, and support...Jon, Kathy, Joy, kids, Dan, Marianne, Susan, Patti, Geneva, Eugene, Anne, Carol, Damita, Rachel, Michele, Rick, Robin, Stacey, Jill, Kevin, Laura, Kevin, the noon Rotary, Marie, Joe, Karen, Sandy, Susan, Michelle, Kelly, Melody, Linda, Mike, KC, Jeff, Debra, Sarah, Jessie, Leapha, Margaret, Dick, Dot...I know I've missed many names and I'll try to add more later. It's been overwhelming - the support, the love, the prayers, the offers of help, the kind words, letters, emails and cards. If you don't see your name here, it's my fault...please know that your words and thoughts are so much appreciated.

To those of you who've walked this path or are walking it now, I'm sure you know about the phases of emotion and thinking that you go through with this diagnosis. Many of you have offered to share your experiences with me, to help me know what to expect at many levels. I'm a pretty independent cuss and, with my love and best friend at my side, haven't felt able to reach out yet to talk about experiences of others or to talk about mine. I know you know that everyone does this journey in their own way and hope you know that I have your names in my pocket as important folks to be in touch with when my head is ready. I know you are there and I so appreciate your willingness to dive into this with me. You will likely hear from me at some point; i'm just not sure when that point will arrive.

Our love to all of you! More soon. xoxoxoxoxSusan

Saturday, June 19, 2010

Home Again! 6/19/2010

Home again we are! And, so glad to be here! We have so missed being in our space and, even more, with all of our very special babies. Michelle, who takes care of house and pets, does a wonderful job...but it's our home and we have missed all of its nuances.

I'm doing well post-op. Little pain, mostly just tired. Path results were both OK and bad: mastectomy got all of cancer in breast, but axillary nodes were 23/24 cancerous. Still, chest xray, bone scan, CT of chest, abdomen and pelvis were distant metastasis. And, no other nodes were seen to have cancer.

My medical oncologist said I'm "cancer free" and that treatment should be aimed at full " cure.". The quotes are mine on her exact words...the surgery supposedly got all the cancer in my body and remaining circulating cells are supposed to be killed off by chemo, radiation, and long-term hormone therapy. Keep your fingers crossed!

We go back to doctors for more post-op follow-up on Thursday next week, for chemo education, some blood work and finally for starting chemo on Monday 6/28, if everything is OK. Chemo will be rough - every two weeks for four months. Then I'll get a month to rest and then 33 radiation treatments. If all goes well, the hard part will be done.

We're still working on logistics, but we think that we will start by going to San Mateo for about 5 days out of every 14...for chemo and other required medical follow-up. Once I'm in the routine and know more about how I will feel with the chemo, we're thinking that maybe Jim won't have to come every time. He is my rock, so it will be a big transition but we also need to try to have something a little normal in our lives right now. His boss is being absolutely wonderfully supportive so no pressure from that side at all. We really appreciate it - and still want to stay on track as much as we can on most life fronts. Trying to balance, as always.

That's it for now. We've been home an hour or so. Birds, dogs and cats are settling. Jim's in his garden checking for weather damage and hoping for tomatoes. Nap time for me! Love to all, Susan

Monday, June 14, 2010

Post-op Progress 6/14/2010

Hi everyone!

Made it through surgery without problems...was discharged the next day before noon (unbelievable to the old nurse in me!). Am doing well on all fronts. Food good; pain not much; sleeping well. Am walking outside just trying to get my energy back.

I know that's not much in the way of an update health wise, but that's all there is. Joy, Jamie, Katy, Damian and Sarah all visited between Saturday and Sunday. Was great to see and talk to everyone - we hadn't seen any of them for months...way too long! Everyone seems to be doing well, with lots of stories, laughs and, likely, a few tales left untold -as it should be.

We are staying at a friend's house in Foster City while he is out of town. It's great to have non-hotel space, with the ability to cook, do laundry, etc. Not that I'm doing too much...more like playing princess for me. Jim's the one who's been taking care of everything, and working long-distance, too!

I have doctor appointments this week and may have path reports back by the end of the week. It seems sure that at least chemotherapy is in my future. Does anyone know of a house/condo/apartment/RV/boat available to rent for four months or so? We're looking for a base during chemotherapy, especially one that would allow a pet or two. Oh, and San Mateo area is what we are thinking.

We appreciate all the love and support you have sent our way. We are trying to inhale all the great energy! Much love, Susan & Jim

Thanks everyone for all your love and support! We have both been inhaling it and appreciate the great energy! Much love, Susan and Jim

Sunday, June 6, 2010

Everyday News from Crescent City 6/6/10

Hi Everyone,

Although we prefer to be able to talk to everyone in this big and extended family/group on a regular basis, we haven't been able to keep up lately. Promises to call as soon as new information is known have gone by the wayside - with the result that you don't know what's going on and we (well, mostly me!) feel guilty that we've not kept everyone in the loop. The idea of this blog is to make that better...even if we haven't called recently, this will be a place to get the latest updates on what's happening here - focused mainly as I work on getting rid of this cancer. I apologize for being a lousy sister/friend re: phone calls. Hope this helps!

Here's the news: the results from my lumpectomy and sentinel node biopsy weren't as good as originally reported and hoped for. My surgeon wasn't able to get clean margins on the tumor (i.e., there is still tumor in the remaining breast tissue) and the sentinel node proved to have a few cancer cells in it and a few more extending into the fatty tissue around it. Not at all what we hoped for. Options for short-course, partial breast radiation are off the table. Chemo and possible long-course radiation are on the table.

But more immediately, I will have surgery again on Friday, June 11. This time I've chosen to do a mastectomy and will also have an axillary node dissection. The surgeon will take out all of my right breast tissue and more nodes under my arm. Best news will be that the tumor has clean margins (they got all of it locally) and that there are no more positive nodes. We won't know the pathology for about a week after the surgery.

After I get the pathology back, more decisions/recommendations will come. At this point, it looks possible that I will get a recommendation to do chemo. It's totally unclear what the recommendation will be re: radiation.

So that's the scoop. Our plans are to work Monday through Wednesday this week, drive to San Mateo on 6/10. We'll be there probably until 6/18 to do post-op visits with docs and to get the pathology results. The docs are saying that time in the hospital will be very short (1-2 days) and recovery should be fairly quick. I'm planning to play princess for a couple of weeks and see how I feel.

As soon as I'm alert enough (or when Jim settles down to do it), we'll make a post to let you all know how things go on Friday's surgery. Do call Jim if you like (916-340-5102) if you want an update earlier. Otherwise, look for it here!

Many thanks to everyone for the prayers, good wishes, support and love. We really wish this wasn't happening (especially me, again!), but are trying to think of it as a job that has to be done, one step at a time. Talk to me three weeks into chemo - if I have to go there - and I'll let you know how "one step at a time" is working!

Love to you all, Susan