Saturday, June 25, 2005

Hopefully today will be calmer!

Mo is not his usual self, but is faring better than yesterday. He's obviously hungry, but also turned off by food...the poor boy. I had to give him some Children's Benedryl and he was disgusted by it...it doesn't come in tuna flavor and he was none-too-pleased with berry flavor. Sigh.

We are off to Kelton's half birthday party today, and we can't wait. A little slice of normal in the midst of the craziness! Tessa can't wait to wear her party clothes, and she's excited to hang out with her little friends as much as we are excited to see the PEPS gang.

With love,
Kristina

Friday, June 24, 2005

Mo update

Mo is out of surgery. It could have been...get this...a BEE sting!!!! They don't really know. We can pick him up later today...

I need you to tell me something - please respond

Tomorrow is the one month annivesary of the day I found my lump. Tomorrow I was going to post this, but today I feel so down and awful that I thought maybe I'd do it today to make myself feel better.

I want to know that my cancer is making an impact on people in a positive way. In other words, I want to know that because *I* am sick, *you* will take care of yourselves....so here it is:

Please post to me with your promise that you have given yourself a breast self exam or done a testicular self exam in the last month, or that you will do one TODAY.

I need to know that something good is happening. When I check this blog, I want to see DOZENS of comments, one from each of you, promising me that you are doing self-checks. Not that you'll do it "some time" or that "when I remember, I will," but TODAY (or that you already have this month). I'll ask the same question next month.

Please leave a comment telling me that you're taking care of yourself by telling me that you've done your BSE or TSE. Mostly, people don't comment in my blog, and that's okay (although I do love to see who is checking on me...you hit the "0 comments" line and it will bring up a place to post comments)...I know you all are busy and I appreciate that you take the time to check on me (I know you do because people reference the blog to me all the time),but today I want your promise. Please post it to me.

Thank you.
K

Veterinarians and oncologists

Mo is at the vet, probably having surgery as I write this. His salivary gland is so swollen that his tongue is filling his whole mouth - I was relieved that they were going to give him some kind of sedative/painkiller to make him feel better while waiting for surgery. He's my first baby and as most of you know, he's an integral part of my family. He sleeps on my foot each night, and I don't dare move for fear of disturbing him...because I adore him. He's gentle with children, affectionate, and silly, and I couldn't ask for more. Oh, just one thing...I want him to be healthy!

There is a possibility that what is blocking his salivary gland is a tumor. Dear God, no.... The vet asked me what measures she should take. I know we're not made of money, but could I possibly tell the vet to put our cat to sleep (what an awful euphemism) knowing that he might have a variation of the same disease that *I* am faced with? I couldn't live with myself.

My beautiful daughter is somewhat traumatized by the whole thing with Mo. She has been crying and asking about him and saying "Worried about Mo" and "Mo is sick and he's drooling too much....the vet should make him better," and such things. I am telling Tessa that the vet will help Mo to get better. God help us all if the vet can't make him well. I am very unprepared to deal with the loss of my beloved pet at this stage, and I'm even less prepared to introduce the idea of death to Tessa. She will make the logical next step in thinking, and I can't bear her to worry about losing her mama. I can't bear it. I can't. I. Can't. Bear. It. The idea terrifies me. So, this is my prayer: Dear God, please help Mo to heal quickly and return to our family. We need him so much. Please....

And then there's the fact that I had a LONG appointment with the oncologist this morning.

Summary:
- Begin chemo as soon as I'm healed from the second surgery (2-3 weeks).
- Start with a combination of Adriamycin and Cytoxin (spellings on these may be wrong - I haven't been home long to do my research), every two weeks for four cycles.
- After that treatment, move to Taxol for 12 weeks, given weekly.
- Adriamycin does not work well with Herceptin, but it does with Taxol, so I'll begin one year of Herceptin treatments while still on the Taxol.
- Adriamycin & Cytoxin have the usual chemo side effects: nausea and vomiting, fatigue, and hair loss, as well as a whole host of others (the least likely but most frightening of which is leukemia - how's that for a side effect?!). Taxol is less taxing (pardon the awful pun) but has similar effects, just to a lesser degree.
- We are still uncertain as to whether I should do radiation; that will be decided later in the process.
- I will also receive hormone therapy (Tamoxifin is the drug most of you may have heard of, as it's in this category). That, too, will be decided down the road. I may be taking Aromatase Inhibiters instead of Tamoxifin, but to do that I will have to enter early menopause (done through ovarian oblation -eg drugs - or removal of the ovaries). It seems very likely that I will have surgery to have my ovaries removed. I don't really care - I'm done with them anyway, and breast and ovarian cancers are linked and so it's advisable with my type of cancer to remove them anyway (assuming that I have the BRCA2 gene, which we won't find out for a few weeks).

The doctor said that she has tons of cancer patients in their 30s who have come out of this very well. She said that she will make me well (along with a whole host of other people on her team). I choose to believe her.

I'm exhausted - this day has really taken it out of me. Thanks for listening.
Kristina

When it rains it pours

This morning I woke up, as usual, with our beloved Mozart (cat) sleeping on my foot. He stayed for a long time even when Tessa poked him. I looked at his face and realized why - he's really sick. He's drooling and his lower jaw is really swollen. We tried giving him tuna (realizing that his crunchy food was out of the question) and he gagged and cried after a single bite. It breaks my heart!

The vet opens in 8 minutes, and I will be ready for their first appointment.... hopefully I can get him there before I get to the oncologist.

So now another family requests your prayers this morning!

Ack. My poor baby. :-(
Kristina

Thursday, June 23, 2005

today's doctor appointment

I'll give you the quick version as my lovely inlaws are here and I don't wish to keep them waiting...

Good news: They took the drain out! It barely hurt (I was braced for something terrible, and it was more like a little tug) and I'm glad to see it gone. Hooray!

Bad news: I will be having a new surgery, and a new drain, on July 18 to remove the rest of the lymph nodes. They don't want to risk it having spread, so out they go. I'll get a new drain then (sigh).

I'm grateful that they're being aggressive. I will get through this. I'm just incredibly disappointed that the "end date" for this whole thing (e.g. the day I say "Look! I have two new healthy breasts, and I'm cancer free....time to go live!") has just moved out another month or two, as I will need to fully heal after the second surgery before I can start chemo.

Another doctor's appointment tomorrow, with the oncologist, and I'll update then. Enjoy the lovely day (here in Seattle, Tessa's playing in the wading pool in the back yard in the sunshine, under her grandparents' doting eyes) and know that I feel well, that I'm resigned to what is to come, and that I'm glad they're going to make sure to get 100% of the blasted cancer OUT.

Love,
Kristina
Yesterday I did my usual, only more so, and wore myself out. However, I wasn't as horrifically bone tired as I've been in the past from wearing myself out, so I believe that I'm turning the corner and my healing is really working.

Yesterday morning we ran errands (including the trip to Trader Joe's) and hung out, and then in the afternoon Michele picked me up and we went shopping at University Village. I hadn't been there in a LONG time and had fun poking around the new shops and catching up with Michele. Then, in the evening, while Ryan was at his massage (which he truly enjoyed) Michele stayed over to help out and we made fondue...not exactly low fat and healthy but it was what I was feeling like having and I enjoyed every calorie laden mouthful.

Michele asked me what my greatest fear is right now. I will say it here, but I don't want to talk about it, because I'm practicing optimism and what I'm about to say isn't optimistic in the slightest. My greatest fear is that if I die in the next couple of years, my beautiful daughter will have no memory of me and how much I adore and love her. Today, I am her world and she's quite a mama's girl, but if I disappeared she would soon lose all memory of me. That is the worst thing in the world that I can think of, and therefore my greatest fear. My words here are stilted and awkward, because my thinking on this matter is awkward and emotional.

There. I said it. Maybe by saying it I will have exercised the demon of that fear. I still plan to live to be 100, and nothing less is acceptable to me right now.

Today I have an appointment with the surgeon at 2pm, and I'm hoping against hope that they take teh *%@)+@ drain out. I've grown to loathe it, it's slightly infected, and it keeps me up at night. I suspect that they will remove it because of the low amounts of fluid coming out at this time...wish me luck!

This morning at 10am my beloved Susan is coming to visit and to chat, and Caley will take Tessa to the park so that we can catch up. Hurrah! I can't wait to see Susan, and to assure her that I am truly well...she's a worrier, and I know she's worried. ;-) (Love you, Susie-Q!)

My lovely in-laws are coming to visit today, and I'm looking forward to seeing them. Many people joke about their in-laws and what a hassle it is to have them around, etc., but I adore mine. They are kind, thoughtful, unobtrusive, smart, and funny, and I really enjoy their company. I'm looking forward to seeing them for myself, but also on Ryan's behalf as I know he can use his own support team these days.

Tomorrow is the "big" appointment with the oncologist...meaning, really, only that it's my first appointment with her, and that I'm hoping to see my course of treatment. Will my chemo be once a month? Once a week? What drugs will I be given? How long will treatment last? Will I get radiation (I am told that I "probably" will)? What are the side effects of my particular chemo drugs? And, most importantly, what day is my LAST day of treatment? I'm ready to start the countdown, and I want to know what number to begin with. I am fully aware that this last question is irrelevant because nobody really knows how my treatment will go but I just want a plan to begin with. I'm tired of limbo.

Yesterday I exchanged some emails with a friend of Alice's (hi, Gretchen!); she's just had a mastectomy as well and has experienced some of the same things I've been going through. It is helpful to talk to someone who really understands the process. I have held off on talking to other survivors until now, but maybe I'm ready to reach out and talk to other women about what's real about this process, and to share the journey.

One of these days I plan to sit down and write something more thoughtful than my ramblings, or to take time to really craft my messages, but today, as usual, there are things to be done. Caley & Tessa are upstairs wondering where I am, and the guest bed must be made up, and life goes on....and that's actually comforting. The little things remind me that life really does go on, and that some things never change.

More later,
Kristina

Wednesday, June 22, 2005

Wednesday report

Hello, all. Very brief here as I'm not yet showered and dressed and I want to get on with my day. :-) I'm doing well, and slept well last night (phew). No doctor's appointments today. This morning we're goign to do some chores and play together, and this afternoon I'm going out with Michele for fun. Hooray! And hooray for Caley, for helping me so much and for caring for Tessa while I'm gone.

Ryan is restless and sleepless; he's working a LOT of hours and is very stressed. Please keep him in your prayers that his work stresses can resolve quickly. He comes home at 6pm each night but then sometimes takes work calls from home and often works until 10pm; this morning he was up some time after 4am and on the computer again. I worry about him - that pace is unsustainable. Tonight, due to the generousity of my parents, he's having a 1.5 hour massage at the club, and he's earned every minute of it. I hope that the masseuse can massage some of the stresses away.

My mental attitude is good today...I'm just humming along. My drain is more bothersome than ever as it's slightly infected, but within the normal parameters for drains. I'm hoping that they'll take it out tomorrow, but we'll see...

Love to all!
K

Tuesday, June 21, 2005

With a new day comes a better mood

Good morning, all. I trust that the day finds you in great spirits!

Today I woke refreshed and ready to face the day. Yesterday was a hard day - perhaps I harbored a secret wish that the new pathology report would reveal that I was cancer free, and though that's foolish the slightly more negative news was a hard pill to swallow. Today, I'm starting fresh.

Screw the statistics. I'm going to beat this thing, and I can't wait to get started with the next step. I can't wait to go to cancer support groups as a guest speaker, telling other young women that I made it and they can, too. In my mind, I'm already there, setting fundraising records for breast cancer research, and inspiring newly diagnosed women. I'm also picturing Tessa's wedding day (I'll be the one crying happy tears) and I'm picturing Ryan and I in Tuscany, sipping Brunello de Montalcino on the porch of a villa as we celebrate our 50th wedding anniversary. And our 60th. And maybe our 70th (although maybe we'll have our 70th at the Stephanie Inn at Cannon Beach - we can decide later!).

Between now and then, there is a lot of work to do, and a lot of play to do, as well. I am working at healing and doing my post-surgery exercises; I am playing with Tessa and looking forward to PEPS at our home this morning. The sun is shining, my husband loves me, my daughter is an inspiration, and the support of those around me is like nothing I've ever experienced before. I am blessed!

Wishing you the peace of knowing how YOU are blessed,
Kristina

Monday, June 20, 2005

Official Staging

Okay, I have news from the doctor. I am officially stage IIb. It's better to be stage IIa than IIb, but I am not given a choice.

I went to Alki with Caley & Tessa and the sand and cold water, with a healthy dose of sun, improved my spirits immensely. It is a beautiful, sunny, Seattle day, and that is not something to forget. The world goes on and is still filled with beauty and joy.

Love,
Kristina

Worries

http://www.komen.org/intradoc-cgi/idc_cgi_isapi.dll?IdcService=SS_GET_PAGE&ssDocName=s_002749

I believe, but have NOT been told by a doctor, that I am in stage IIa. According to the above information, which correlates to what I have read, that puts me in a category with an 88% survival rate over 5 years.

So now I know. And I'm scared. I plan to be in the 88%, and not in the 12%. I will not look at these numbers ever again. They do not apply to ME, only to statistics. I will beat this. But I'm very, very scared.

Today would be a good day to pray (think, pray, whatever it is that you do to send positive energy into the universe) for me, if you can. I am trying to be positive and I am struggling.

Thank you.

Pathology Report - Update as to Cancer Status

I spoke to a nurse at the doc's office just a minute ago. My pathology report says:

- multiple minute foci of metastatic carcinoma in one lymph node, with no extracupsular spread (encapsulated)
- three tumors, sized 2.1cm, 1.5cm, and 0.2cm

This is not the news I'd hoped for, although I suppose it could be worse. Before, we only knew about two tumors, and they found a third very small one. I had hoped that the lymph node was entirely clear, but it's not. It's good that the lymph node appears encapsulated, though.

I'm tired and I'm sad. I am sick of this roller coaster. I want to get better, and I am sick of bad news.

I haven't spoken with my doctor yet, so I don't know anything else. My appointment with her is on Thursday, but I left a message asking her to call me.

Kristina

Monday - a week since surgery

Hello, all! I hope that this sunny Monday finds you all well.

This morning I am doing well. I went to the genetic counseler this morning, and had blood drawn for genetic testing. Since my paternal grandfather had breast cancer, and male factor breast cancer has strong genetic ties, there is a strong possibility that this cancer has a genetic basis. I will be having a comprehensive set of tests done, and IF I test positive for BRCA1 or BRCA2 then we will start having various members of the family tested, as well. If you are a relative of mine, stay tuned, and I will have more information. Men as well as women are impacted, as the breast cancer genes are also linked to prostate, colon, and pancreatic cancers. For woman, ovarian cancer is also linked. (Lovely.) I'm now considering having my ovaries removed as well as my other breast (many women do this)...we'll see about that as we get closer.

Every single day I am grateful that I already have my perfect family. I do not desire another child - I am completely, blissfully happy with my one beautiful daughter, and would never ask for more. We decided long ago to have an only child, and I am so grateful that we made that decision - Tessa gives me a lot of strength and I adore her presence in my life; at the same time, I have no regrets for the children I will not be able to have, as I did not choose to have other children anyway. I am also grateful for the time that my breasts served me well. I breastfed Tessa for 15 months, and I hope that she gained immunity through that time that she can take onward into the rest of her life. I am also grateful that I have had years with Ryan prior to all of this happening - we draw strength from those years, and I know that his love of me, or even my ability to appear sexy and sensual in his eyes, is not tied to my breasts. Don't get me wrong - we BOTH liked me better with two breasts, but no breasts is better than having a breast with cancer. We'll take what we can get.

I plan to live to be 100. All of my treatment decisions are being made with that in mind.

I don't know the pathology results from the surgery yet - still waiting!

I got back from the doc at 11, later than I'd hoped, so I'm a bit tired. I sent Caley and Tessa to Lincoln Park to play at the beach and to have a picnic lunch, and I will rest. After Tessa's nap we all plan to go to Alki to soak up this lovely weather.

Love to all,
Kristina

Sunday, June 19, 2005

Happy Father's Day

Happy Father's Day to all of the wonderful men in my life. First, to the man who shares my parenthood journey with me - Ryan. You are a fabulous father! Next, to my own incredible father, who has given me strength to believe that I can accomplish anything I set my mind to (how about a cure for cancer?!). And then for all of the fabulous fathers I know....for I am surrounded by incredible men who believe in being role models for their children and for truly being present in their children's lives. Special thoughts go out to my brother, and to the PEPS dads. Happy Father's Day, guys!

I am struggling with fatigue. I nap, but don't feel rested. I guess things are catching up with me, and it's only normal (I'm told) but that doesn't mean I have to like it! The drain is becoming more uncomfortable, rather than less so, and I can't seem to get comfortable, which makes my sleep less restful, which makes me more fatigued. What a cycle! I continue to take the drugs that the naturopathic doc gave me, and hope that my energy levels will bounce back soon.

Today, after a family snuggle in bed while Ryan opened his father's day presents and cards, we went to breakfast at Endolyne Joe's, and then we went to Lincoln Park to play. I was tired after that, so we went home and Ryan entertained the girl while I slept and rested. Then Paul & Libby came over, and we had a lovely afternoon together. Ryan and Paul were able to go for a bike ride while Tessa rested, and Libby and I had a great chat. We all went to dinner - we walked, and Tessa rode her trike - at Ephesus, just up the street, and it was lovely.

But now I will take two Vicadin (sp?) painkillers, some vitamin C, a multivitamin, a probiotic, and some essential fatty acids as my dessert, and I will try to get some sleep. Tomorrow is relatively quiet - just one doc appointment, this time with the genetic counseling group. My next major appointment is Thursday, with the surgeon (hopefully I'll be ready for the drain's removal) and then with the oncologist on Friday. The appointment with Dr. Rinn on Friday is the "big" appointment, where I will learn more about my course of treatment (timelines, drugs, etc.) I believe.

I still don't know pathology report data from the mastectomy; I was told it would take 6 days so I should find out more tomorrow or Tuesday. I'll let you know when I find out, I promise!

Good night, all. Sweet dreams to everyone, especially the wonderful fathers in my life. I am blessed to be surrounded by such caring men. If the fathers I know are any indication, the next generation of children will be exceptional, and our planet stands to improve as a result.

Love,
Kristina