Surgery Results

8 days post surgery - Woo Hoo! Moving on and moving forward. . . Today was my first follow-up appointment with my surgeon. I found out that they actually took 11 lymph nodes during sugery and only 3 were found to be positive. During surgery there were more lymph nodes that felt enlarged that were concerning, but couldn't be reached at that time. These results alleviated that concern. Cancerous nodes follow one after another and with 8 negative ones in a row past the 3 positive ones, it is clear that those enlarged ones are nothing to worry about. Sigh. The tumor found ended up being 2.5 cm. The scattered microcalcifications were found to all be cancerous as well. But, it is the kind that is still in very early stages and is not spreading. My hormone receptors for estrogen and progesterone were found to be positive. This is a good thing because it means that my body will respond to certain additional forms of chemo-therapy that it otherwise wouldn't. Her2Neu receptor was found to be negative, which isn't particularly good or bad. Everything was successfully removed during surgery, but because of the type of cancer I have further treatment is still necessary to try and wipe out the possibility of a future occurrence. Cancer is graded by 3 things, T-tumor size, N-number of positive nodes, and M-metastasis (whether it has spread to other parts of the body). At this point my cancer is graded as a T2, N1. I am scheduled for a bone scan on Thursday and a CT scan on Friday of this week. Those results will grade the M of the cancer, which is either a yes or no rather than a number. Results for those things are not due back until the following Thursday, 6/8.

The fluid continued to collect in my chest area and by my appt. time today it was actually slightly larger than my breast had ever been. The pain has certainly been mounting with the added pressure too. I teased the Dr. when he came in and told him that my boob grew back. He said he gets that a lot from his patients. And I thought I was so original. Ha! So, he assured me that this was a normal part of the process, which was a relief. I really began to trip out at what was happening. During my visit today he was able to drain it all which relieved a lot of pain and pressure thank goodness. Initially when he pulled out the huge needle he was going to use I cringed at the thought of more pain, but luckily I didn't feel a thing. Yay for nerve damage! There is still quite a bit of numbness on my chest and under my arm which may or may not go away. Only time will tell. Anyway, he expects that it will fill up again at least one more time so I will go in next Monday to drain again. You know, I can't help but wonder if this is just too much information. Maybe so? Oh well, here it is anyway.
(As if the description wasn't enough. . . now you've got a picture too. I just think its so wierd that I had to share. Can you tell which one is fake?)

My mom left to go home last night so this was my first day alone. Left to my own devices I instantly did something stupid. I decided that today was the day I didn't want/need the heavy pain medicine anymore, so I just didn't take it. Stupid. This is after a solid week of taking it and needing it every 4-5 hours. So, after 13 hours of no medicine I was miserable. Mike came home for lunch and basically just said, "you're not a junkie. . . you need it. . . take it. . . " So, I did and eventually I found my status quo again. Even then, I'm still far from feeling great, but it is absolutely bearable and I can move about and function. My Dr. also assured me today the people stay on pain meds typically for 2-3 weeks. So, I'm going to stop feeling bad about being drugged up and I'm just going to accept what I need and do it. Sometimes I guess we just need to hit a wall before we really get it.

Weather has been perfect. Mid to high 70's, breezy, blue skies, shining sun. I'm so thankful for that gift in the midst of all of this.

Mom, I'm so happy that you were able to be here with me. I had no idea how much I really needed you. You helped me like nobody else could and I appreciate it so much. Thank you thank you thank you. . .


Sweet dreams!

"Tomorrow, stronger"

Today was the best day yet. The pain continues and is lasting much longer than I thought it would, but it does improve each day just a little bit. It is now 6 days post surgery and I am far from "recovered," but I'm closer. My friend Greta shared this story in an email recently that has really helped me recognize each small improvement. . .

When Laurent's ex-mother-in-law lived in Ambler with the old-fashioned, Native elders back in the 60's, she was learning to sew caribou skin. Each time she would finish a project and show it to them, they would examine it carefully and quietly, then look to her with a gentle smile and say, "next time, better". It always pushed her forward to improve while not crushing her joy of learning. I think it is a beautiful mantra, in other ways too, like, "Tomorrow, stronger". That is what I'll say to myself when thinking of you as each day passes. Each day, a little better.

I think of this everyday, and everyday it does ring true. I so appreciate this sort of perspective and thought and will do my best to keep it with me.

Another thing I appreciate is laughing. . . today I laughed particularly hard about this. . . Without giving too much unneccessary detail I will just say that there is a lot of fluid build up at my mastectomy site. My chest has been slowly filling up with excess fluid since my drains were taken out a couple days after surgery. Its normal and it will go away, but right now there is so much that the left side of my chest is almost back to its normal breast size. Under a shirt, it actually looks like I might still have a breast. Mike was teasing today saying, "now don't get too attached to that fluid, I don't think its going to last. . . wishful thinking might help, but I wouldn't count on it. . . " Then my mom says, "maybe she's a medical miracle and she's growing her breast back?" Maybe you had to be there, but it sure got us all laughing pretty good. Ha!

Before I end, I just want to say that I hope that my challenge, my pain, my burden, my difficulty. . . I hope that all of this doesn't become yours. I hope that the cancer in my life doesn't infest your life too. I spoke with my oldest and certainly one of my dearest friends today and I realized just how much this is affecting her. I don't want that for her or for anyone. I realize that people are dealing with their own feelings about all of this, but please, please, don't let this cancer mess up your day. The fact that its messing up mine right now is more than enough. Please stay positive and hopeful and just don't let this bring you down!


Here is a photo of my friend Greta, beautiful gal on the left. Also in the picture is Millie, another dear friend I found in Nome. The other picture is of Greta's sweetie, Laurent (from the story above) and their son, Florian taking a bath in my kitchen sink.

A couple of things. . .

Some of you have asked for my mailing address, so here it is :)

In Nome:
PO Box 1057
Nome, AK 99762

In Anchorage:
PO Box 201325
Anchorage, AK 99520
(I will be at this address at least until June 8th for now and will be back frequently in the coming year or so)

Another thing I wanted to mention was how awsome my sister-in-law, Cerra is. She is married to my older brother Dillon and is a sweet, wonderful woman. On May 13th, she participated in a run for breast cancer with me, among others, in mind. You can read about her run and see pics on her blog, dillonandcerra.com

Simple days ahead. . .

Instead of thinking of my days as boring, I will think of them as simple. Today was the first of many simple days I presume. I did a lot of sleeping, took a tedious sponge bath, had a few moments in the front yard under the sun, and was treated to my hair being washed and braided by my mother, as well as my toes getting polished in my favorite burgundy red. I had plans for a long walk in the park, but this "healing after surgery" thing is a little more complicated than I had originally thought it would be and the walks, short or long, are a little further away I think. My pain is fairly controlled, but unfortunately, not completely. I also get woozy and tired all too often too, so lots of readily available places to sit is a must. A friend actually helped me visualize the fact that my body is probably in its angriest state and that its going to take a lot of time to re-group and find its balance again. Three days later, and I am definitely realizing that I underestimated this surgery.

My trip to Boise and SLC, which was tentatively scheduled for June 12th to 24th is looking to be much less of a possibility. I'm not ruling it out completely yet, but I am realizing that I did not realistically plan for the time I am going to need to be in my best state before starting cancer treatments. Travelling may just not be an option right now. Maybe later this summer?

Tonight I was treated to a favorite meal of mine, Thai Green Curry, compliments of my sweet friend Greta. Another girlfriend, Kirsten brought incredible chocolate for later. We had a relaxing visit and it topped my day off perfectly.

Here's to you (and me) finding a moment to enjoy a walk as often as you can!

Alas, the surgery is over.

The time leading up to the surgery was something that is pretty difficult to put into words. I know that I keep saying that, but its the truth and I hope that people reading this can understand that my words have been limited with others because of this fact, among other things. It was important for me to take that time between diagnosis and surgery to do what I could to come to peace with the reality of what was happening to me and my body. I was as ready as I could have been on Monday. The feelings inside me directly before the surgery were relief and sadness.

The anesthesia given for a surgery like this is a powerful thing. I remember very little of my time directly pre-surgery and was not fully aware until about 8 hours post-surgery. The fight for consciousness and awareness when coming out of anesthesia is quite intense. It was definitely a very unpleasant experience that I'm crossing my fingers I won't have to repeat any time soon. I do recall having specific things I wanted to know and hear that I couldn't convey to others. Instead I think I would become so quickly exhausted that I would pass out or cry or get frustrated. I imagine it was pretty difficult for the people near me too. I remember feeling very emotional when I had any consciousness of my wound site. The tears flowed pretty freely as much about sadness and realization as about just a general relief. I remember being kissed by my mother and Mike. I remember too many faces near me that I didn't know. When I finally came completely to, it was about 11:30pm. I was in a nice room alone and my mother was there spending the night with me. I was able to eat some solid food, among the best was a whole fruit strawberry popsicle. Oh it was delicious. It was the first time I was able to really talk with my mom much about some of the things I was feeling. We layed in the dark and visited into the wee hours of the morning and it was really nice. I was glad that she was there.

What was supposed to be a 2 hour surgery turned into about 5 1/2 hours. My mother and Mike were there waiting for me and the soonest memory that I recall post surgery was of them by my side. Apparently the surgery went well, considering. The hope of not finding cancer positive lymph nodes did not come true however. In addition to the mastectomy, the surgeon also took out three lymph nodes for further testing. Its scary and unfortunate that there were positive nodes, but until everything is fully examined in the lab, there is still not much more to get worried about. The results should be back by the end of the week.

What I do know now that I didn't prior to the surgery, is that in addtion to chemotherapy I will also be undergoing radiation. I will also be getting a cat scan and bone scan next week to get further information about whether the cancer has spread to other parts of my body. The terrified feelings that I've had are needless to say, not lessening just yet. This is just a step by step process and I think that each day I simply need to be patient and present to the events and the feelings of the day. I remain hopeful, but realistic about how awful this all really is. The positive thoughts are still flowing, but I am finding how important it is for me to also be real with the pain that I am experiencing. There is a fine balance that I'm struggling to find each day.

The morning after the surgery I was able to rest in a lovely room, with a huge window, beautiful view of the mountains and the sun shining on me. Gorgeous flowers filled my room from friends and family and I even had a couple of soft stuffed animals that were actually incredibly comforting to hold. There was a little puppy that was a blonde version of my own little Henry. I also received a wonderful lavendar filled blanket/wrap from my doctor in Nome. It is just heavy enough that when wrapped around me I feel like I'm being held. The smell is soothing and healing too. It has been a huge comfort to have this past couple of days.

The bandanges came off today and a further reality of what has happened to my body set in, in a way that I could not have anticipated. The change in my appearance is immense and my feelings are very raw to say the least. My pain has been pretty well controlled by medication, but I am still pretty weak and woozy. I am up and moving around, but its slow and I'm needing a lot of breaks and rest right now. I was discharged this afternoon and am glad to be home (thank goodness Mike has given me a home away from home).

Thank you again for all of your emails, phone calls, letters, flowers, etc. I have everything I could need and am so appreciative. Please know that this message is personal and I'm writing to you because I do want you to be a part of what is happenng with me. The one to one communication is just a little overwhelming still. Keep believing in me as I am trying to do too. . . I will write more when there is more to tell.

Love, Sasha

A brighter side. . .

I'm feeling okay today. Each day is different, but it seems that I'm moving forward in the process of accepting that cancer is now a part of my life. I think I am going through a lot of grief about the losses that I am experiencing and that are yet to come. This is not a simple or easy journey. I am searching my heart for the strength to endure and the ability to find the brighter side in all of this. There must be some greater plan/reason for this to have happened in my life. Hopefully someday I will be able to understand what that is.

I have a lot to be grateful for and I know that. I have so much love and support and stories of survival pouring my way. I also have wonderful doctors. I emailed a local doctor here to request that he be my provider here in Nome. His response brought a deep feeling of gratitude for how lucky I am. There has been some concern expressed to me about the lack of resources here in Nome because its so small. I thought I would share this note from my new Dr. that could help you see one of the reasons I am so fortunate to be here, especially.

I am so sorry to hear about your cancer, Sasha. I've been thinking about you a lot and hope you're doing OK. I would be happy and honored to help you out as best I can on this end. Consider yourself a VIP (very important patient) from this moment forth. Call me anytime--really. I am not an expert on breast cancer, obviously, but I think I can provide what you need on this end with help from your Anchorage doctors. Who are your doctors in Anchorage? What are your plans for treatment so far? I'm so glad you have Mike in Anchorage for support. . . its the first time I have stopped wishing he were back here!

I can only imagine what you must be going through emotionally. I'm sure you have a lot of support here in town, but let me know if you need anything at all from me, medically or not. I'll be waiting to hear from you or your Anchorage docs otherwise.

Your comment "I've never really been a patient for much of anything and I'm not exactly sure how this works" was probably meant in terms of logistics, which actually is the easy part. For you, a healer, the tricky part might be figuring out how to be the person who needs to experience the healing, to let go of everything that isn't important and just focus on taking care of yourself.

I'll call you Thursday or Friday. My home number is. . . if you need to call me at home. Really, do feel free to contact me any time. I promise you will never be bugging me. Thank you for asking me to be one of your partners on this difficult journey.

In addition, I also received a phone call directly from my doctor in Anchorage today to ask me how I was doing and if I had any further questions or concerns at this time that I wanted to talk about. I don't know how much better things could be.

How do you title this?

On May 4th I was informed that I have breast cancer. Thankfully, I was with my dear friend Mike. Since then I have been overwhelmed with support, questions, concern, hope, fear. . . . from so many people that know and love me. The emails and phone calls that I've received have all been extremely comforting and I appreciate it more than you know. Its difficult to muster the energy to really explain what this whole ordeal has been so far, let alone what its going to be in the future. Although I would like to be able to talk about all of this with so many of you that want to talk to me, I just don't think I can right now. I am going to attempt to use this blog space as a way to stay connected with you all and keep you informed. I thought I'd start by sharing with you some of what has led up to this diagnosis and try to answer the common questions that you have been emailing.

I do regular self breast exams and about a month ago I noticed a small lump. It wasn't terribly concerning to me, but I found myself going back to it everyday, sometimes several times a day. About a week later I mentioned it to my good friend, Greta, who is a nurse, and had her feel it. She did, and like me was not terribly concerned. I know that breasts change with your cycle and at times can feel more lumpy, so I wasn't in any hurry to get it checked out. There was no tenderness or pain and I didn't feel any different than I ever had. Another week went by and Greta actually came to me and asked me about whether or not I was going to get the lump examined by a doctor. That same day, out of the blue, my tonsils flared up to the size of golf balls and I had a sore throat like no other. I thought I could have strep so I went to the clinic to get a throat culture. As a side note, since I was there anyway, I asked for a breast exam. I don't know that I would have even done that if Greta had not encouraged me to that same day. So, the throat culture ended up negative for strep and my tonsils were back to normal within a day, but the breast lump was "somewhat concerning" as the provider put it. I was scheduled for an ultrasound later in the week. That too was "somewhat concerning." The following week I had a mammogram which turned out to be "very concerning." I have a whole new perspective on what "concerning" actually means. I also am amazed at how our bodies work. I have no doubt that since I wasn't listening to my body about the lump, my body gave me a much more obvious reason to take notice via swollen tonsils.

The following week, last week, I went into Anchorage and had a needle biopsy done. That was on Tuesday. I stayed in Anchorage until the results came through two days later on Thursday, May 4th. The couple of weeks that had passed since my first official breast exam were an experience that I truly cannot put to words. I definitely went through a huge range of emotions, but ultimately true disbelief that the lump could actually be something as terrible as I now know that it is.

Those two weeks, were nothing compared to what I've been experiencing the past 5 days. There is far too much going through me right now to even try to convey in words. Obviously, I'm far from great, but I am okay. I'm dealing with the reality of having cancer as best as I can. I'm hopeful and optimistic. . . . and terrified. I'm taking it moment by moment and trying to absorb all that I'm feeling. I feel as good as I think I can considering the news. I am well supported in many different ways and I'm so grateful for that.

Many people have wanted to know the technical stuff of what is going on and I can give you as much as I know. My diagnosis is Invasive ductal carcinoma, poorly differentiated, focal high grade ductal carcinoma in situ with comedo necrosis, and scattered microcalcifications. That is straight from the pathology report from the biopsy. What it means, as I understand it, is that I have a malignant tumor that can spread throughout my breast(s) and possibly beyond. I also have a large area of my breast with similar, abnormal calcifications that may or may not be cancer yet. The treatment will be a left breast mastectomy, due to the extent of the affected area of the breast and the high chance of the cancer recurring. After the surgery, I will know more about whether or not the cancer has spread anywhere else in my body. I know that I will be having chemotherapy, but it depends on the full pathology report, whether I will also have to have radiation. The actual course of treatment cannot really be discussed until after the surgery. I am scheduled for it on Monday, May 22nd.

I have had a long week in Anchorage, but happily returned home to Nome tonight. Oh how nice it was to get home! I have a little more than a week to just be here, be with my dogs, process all that is happening, settle some things up at work, and prepare (if that is even possible) to have a part of my body removed. I'm trying to stay present and focus on the moments and what is right in front of me. I'm struggling to stay focused and positive and not allow myself to enter the spin that could so easily swallow me up. I think I'm doing alright so far.

My friend Mike recently moved to Anchorage and rented a nice house with plenty of room. He has opened it up to me and assures me that I will always have a place to call home when travelling in and out for treatments. Because he is a doctor, he is also able to really help me navigate through all of the technical aspects of this process. His sister, my friend, Kate, also lives in Anchorage and offers a great deal of support to me as well. I have tons of people in Nome who are here for me too. All of you that are so far away are still very important and necessary to me as well. I know that I cannot begin to do this alone and I know that I don't have to.

Many of you have wanted to know what you can do for me . . . Please just know that your thoughts, prayers, positive energy, etc. all matter to me greatly. I am counting on it. Please trust that I will lean on you when I need to and understand that it is hard for me to talk about everything right now. I will write here on this blog as things continue to unfold.