So far, so good.

Well, much to my surprise and delight, I am doing much better than I thought I would. Today's morning walk felt great, just a little tiring, but not bad at all. We hung out at home for a while, and then after lunch while Tessa napped I went on email for a while, tried to nap (unsuccessfully), and then played with Tessa while she woke up. During the time she slept, Ryan took a bike ride and paused for an iced coffee, refreshing himself body and soul with both activities.

After nap/rest/biking, we ran some errands. We recently bought Tessa a twin air mattress to replace her Pack'n'Play because she's growing so much, and we set it up in the guest room downstairs because it's so nice and cool down there compared to the warmth of the top story of the house. (Am I repeating myself here? Forgive me if I've said this.) Anyway, we didn't have twin sheets and so today we went and bought some sweet little sheets for Tessa, which isn't really a big deal, but reminded me of how much she is growing up. She is more or less ready for her big girl bed, and we'll have to start looking for bargains. (She's in a toddler bed now, which is okay, but a big-girl bed might be even nicer!) We also got her a new swimsuit - hard to find because the stores are full of fall clothes already - because she has grown so much that one that fit at the beginning of the summer is now tight and small. We ran a couple more errands, as well, and got things accomplished that needed doing.

Anyway, these are all normal, everyday things to do, and it's good to have a dose of the normal, everyday. We went to dinner at Angelina's for pasta (sounded good to me), and came home a bit later than expected, so as soon as we got home we tucked Tessa into bed and now I'm waiting for her to fall asleep so that I can climb into the guest bed in the same room! (This is a good reason to have seperate bedrooms, but I must say that in the heat of the summer it is very nice to have the option of the cooler room even if it does mean we have to share.) As soon as she's silent, I will join her.

Tomorrow we plan for a trip to Alki Beach to play, and have little plan beyond that. Oh, except I'd like to go to the Farmer's Market to get berries, basil, and whatever else looks good and in season. I've missed a few weeks because of all the craziness, and I need to go back.

Sending my love to friends and family. Things are much better than I imagined, so far, and I will take all that I get. Thank you for your continued love and support. :-)

xoxo
Kristina

I just woke up (9:25) and I feel rested!

I'll keep this quick because Ryan and Tessa are upstairs, unaware that Sleeping Beauty has arisen, but I wanted to share...

I just got up from a long night's full sleep, and as a result I feel somewhat, well, normal! HURRAH! This is certainly celebration worthy. This should be a lovely weekend.

Kisses,
Kristina

Addition to the above: It's 11:32am and I still feel pretty good. I showered quickly and got dressed, and then joined Ryan & Tessa on a walk to Starbucks and back (about a mile round trip). That tired me slightly but it also made me feel alive and happy, so definitely worth it. Interestingly, coffee didn't sound good, so I had an Odwalla smoothie, which hit the spot.

If this is the second part of chemo, I like it! Much better than yesterday.

Ending the evening on a positive note

Today I didn't do much. No, really, today I did nothing. Heather & Kelton came over today at about 11am and I was barely out of my PJs, and then when they arrived I plunked my bottom into a lawn chair and watched the two children cavort in the pool. Caley made us a nice, simple lunch with the fresh things that Heather brought to share -thank you - and then when they left, Caley put Tessa down for her nap and I went to my own nap! I didn't sleep, particularly, but I rested, which is good.

I also called the oncologist's office, and was told to take two of the Ativan to help me sleep tonight. Let's hope it does the trick - I'm really tired so I can't imagine not sleeping again.

But the good news....tonight after dinner (thank you Lori....and thank you to the last week or two of people that have kindly brought us meals that I have neglectfully ignored....Linda, Lynn, Karen & Alex, and others...) I actually joined Ryan & Tessa on their evening jaunt. It's not exactly fast paced but it is actual movement that doesn't involve sitting, and I'm proud of myself for the attempt. It DID give me energy, and I've actually taken out the trash, put a few things away, and watered the plants outside because they're all wilting in the heat (and the tomatoes are bearing fruit that I can't stand to die - I can't wait for those succulent bites!).

So, the rule about exercise beating fatigue seems to hold true. Or maybe I've turned a little corner. But I'll take it!

Love to all,
Kristina

But I want to be Active Girl!

I have so many things that I want to do. It's lovely weather again, and I'd love to take my daughter to the zoo, pack a picnic dinner for the beach to share with Ryan when he returns after work, go to Target and run some errands...but instead, it's taking all of my energy to make a few phone calls and tend to Tessa in the minute or two when she wants her mommy instead of Caley (who really handles 99% of Tessa's needs when I need her to). This is as much moaning as a statement of fact - I just miss having energy, and today is my new low for energy.

But I don't feel nauseated, and that is a very, very good thing!

Kristina

Yawwwwwnnnnn

This morning I woke up at 3am. The heat was not a problem last night because we all slept in the guest room (Ryan and I in the bed, Tessa on an air mattress) and the guest room, being in the basement and on the shady side of the house, stays much cooler than the rest of the house. Anyway, I woke up, completely alert...but exhausted. I took an Ativan (which is actually an anti-nausea -anti-emetic- drug, but causes drowsiness and the doc said I could take it if I had insomnia, and by 4:30 or so I was able to doze a bit, but I never fully went back to sleep. I'm STILL in my PJs, still not functioning fully, and it's disheartening. I feel okay but obviously not well rested, and since I'm tired from the chemo drugs anyway it's not a good combo!

One of the drugs I'm taking contains a steroid, and that is usually what causes this. Now I need to figure out how to cure it. I will call the oncologist today, and the naturopath as well, to figure it out.

Thank God for Caley - when Ryan left, Caley took over, and I have done nothing today.

So far, still very low grade nausea if at all, and I'm doing well...

Oh - and a note for people reading this who might start chemo soon (Susan!) - I have been told over and over that stool softeners are a must for A/C chemo. Bleeding bottoms and much pain ensue if this advice is not followed, I'm told. And prevention is key. So, I take my little pill, on top of all of my other pills, and I've been okay so far. (Thank you Lia for telling me about this!)

Kristina

Chemo - How it Worked for Me, Days 1 and 2

Okay, so this is what chemo was like for me the first time:

12pm: Arrive for appt at oncologist (Dr. Rinn) office, pick up paperwork for blood draw, and wait in a different lineup

12:15: called for blood draw - my first draw from the portacath. I had a nice nurse, who talked me through it, and it didn't feel too bad. They give me a tiny injection of lidocaine (sp?) into the cath so that I don't feel the bigger needle that is the IV, and that seems like a good system - pretty tolerable.

12:30: Wait again for Dr. Rinn. Get my blood pressure and other vital stats taken, answer questions about general health. Then Dr. Rinn came in, and I asked her my questions:
What was my FSH score? (Can't remember what the acronym FSH stands for, but it's a more accurate/more expensive her2/neu test.) My score was 9x the normal her2/neu gene....in other words, I am DEFINITELY her2/neu positive.

With Herceptin, is this a more treatable cancer than other types? Yes. Herceptin has changed the landscape, and is a miracle drug in many ways.

Will I get radiation? This is still undetermined. With zero positive nodes, the answer is no. With four positive nodes, the answer is yes. Since I have one positive node, it's on the fence. Later in the process, I will see a radiation oncologist to decide. Radiation would be given after the full course of chemo treatment, in any case.

What kind of hormone therapy will I get? At this point, we're looking at a drug called Femera (sp?) as more effective for me than Tamoxifen.

What can we do about nausea as a side effect? Lots of things! I got a high-density (lasts 5 days) Zofran IV before chemo, as well as a VERY strong drug called Emend that is taken orally for three days starting on chemo day, and four other prescriptions, two of which I take twice a day and two of which are on as "as needed" basis. One is also a steroid, which apprarently helps with joint pain, another possible side effect, as well.

What is my follow up for each chemo? The next day, in addition to keeping up with the many drugs I'm prescribed, I have to come back to the hospital to get a Neulasta (sp?) shot. The shot boosts white blood cell production, and enables me to do the dose dense chemo that I am taking. Dose dense without a white blood cell booster is almost impossible because the blood counts would get too low, but it's better to do dose dense (for me anyway) because it blasts the cancer before the cancer has had a chance to recover from the last chemo treatment, and studies have shown this to improve the odds. (Dose dense means having the same dose every two weeks instead of the standard every three weeks.)

Do I qualify for any clinical trials? At this time, no. There is a "dose denser" trial (chemo every week) but it doesn't allow for patients with Herceptin, and since Herceptin is such an important part of my treatment, there is no way to join that trial.

Should I have a hysterectomy or an oopharectomy? Unknown. It is important to remove the entire fallopian tubes, and sometimes that can't be done with an oopharectomy. I need to follow up with my OB/GYN (who will perform the surgery) and Dr. Rinn will ask her colleagues as well.

There were other questions as well, but these were the main ones. There was some debate about whether this was too soon to start chemo after my previous surgery/drain removal, but with Dr. Dawson's blessing and my somewhat miraculous healing rates we believe that the risk is small for starting "early" - what a relief for me.

Michele took notes through the meeting and asked the questions that I was somewhat too overwhelmed to remember, which was incredibly helpful. Thank you, Michele!

Then, we were transferred to another waiting room, on another floor, to wait a while for chemo. We were able to eat (I'd packed a lunch) which was good because it was 1:30 by this time and we were ravenous....but when we got in they offered us lunch! Guests and chemo patients have a whole smorgasboard of food to choose from (fruit, sandwiches, drinks, cookies, etc.). I had to take an Emend immediately because it has to be in the system for an hour before chemo begins, so we just sat and chatted and watched the clock, trying to ignore the soap operas on the TVs to either side of us (shielded partway by curtains). When the hour was up, Ryan called to say that he was on his way - hooray! - and he arrived before the actual chemo drugs were hooked up.

Then, I got saline drip and chemo. The Cytoxan is a small IV bag, but the Adriamycin is delivered through a syringe (two actually) into the port, by hand. Neither one hurt, and it was not unpleasant for the most part. The Cytoxan caused me some sinus pressure and pain (headache), and because of that they slowed my drip rate to take an hour instead of a half hour. It was noticeable, so I'm glad they did that.

When all of that was in me, they unhooked me, and sent me on my way! It was about a 3 hour process, I think, not including the doc appointment beforehand (and usually the doc appointment will be shorter, but I'll always have to do the blood draw to make sure my counts are up enough to have chemo - otherwise, I have to be hospitalized or delay chemo if my numbers are too far off).

I felt a bit woozy, but nothing I couldn't deal with, as I left the hospital. The "barf bucket" (a bucket WITH A LID, and a package of tissues....something I read about that sounded like a good idea because throwing up in a car on a freeway sounds pretty bad without a barf recepticle) sat patiently waiting for me, but was unused. I hope it remains unused!

My sense of smell is heightened - the lavendar out front smells divine - and I fight some minor nausea, but today I haven't had to take any "extra" pills. I'm fatigued, but not unbearably....I hope to go for a walk with Tessa again tonight.

The Neulasta shot was today, and sweet lovely Heather drove me and even bought me an iced Starbucks coffee. The shot had to be delivered subcutaneously (like a shot for diabetics) so the port was not help today, but though I was told it would sting, it didn't feel bad at all. I had them do it into my belly - which fortunately or not, depending on my perspective, is fatty and easy to inject, and I will repeat this next time because it felt okay. Plus, I had a nice nurse (with a three year old daughter, Mary Catherine) who massaged the site as the injection went in, and I think that helped.Its main side effect is joint pain, for which I am welcome to take Tylenol or Motrin or whatever. So far so good - and they say the first 48 hours are the worst.

I am scheduled every two weeks for this type of chemo (Adriamycin/Cytoxin) and then I will switch to Taxol and add in Herceptin as well. If this is as bad as it gets, I'm going to be just fine. Some people have nausea kick in on days 3-5, but I'm hoping that luck will be on my side.

And there's the long of it! I hope that answered a lot of questions - especially for people like Susan who have yet to begin chemo. My final analysis? It's not nearly as bad as I'd expected. And that, my friends, is delightful.

Love,
Kristina

Hair (Bald) Appointment

I am convinced that it will be psychologically easier for me have my head shaved than it will be to wake up with half of my hair on the pillow or to feel it coming out in chunks in my hairbrush. Since hair usually comes out between days 14-18 (gone totally by day 19 at latest), I have decided to shave my head on day 13 after the first chemo (since I'll be in treatment again on day 14). I have an appt at the little place within walking distance of our house for 7pm on August 9th. I plan to bring Tessa and Ryan for support - I think it will be helpful for Tessa to see the process and to help her understand. I plan to bring washable markers (and wipes!) for her to decorate my head and make Mommy beautiful.

If any of you know good wig stores, or places to buy cute hats, this is the time to let me know. Before then, I want to have a good supply!

Love,
Kristina

I've lost my chemo virginity!

Well, I have survived, and even thrived, through my first chemo infusion. I had wonderful, warm nurses to help me, and my doctor is a big believer in preventative measures to keep nausea at bay...and these appear to be doing an A+++ job, as I haven't even felt a twinge of queasiness. Today was long, but I felt good throughout, and I continue to do well this evening. I am drinking water by the gallon, as suggested, and so far feel really great.

Today's surprise: Michele came with me and was her usual, wonderful self (thank you!), but I had a surprise guest...RYAN! Even though today was his first day back and he was worried about how behind he was, he met with his boss to get updates and she said, "What are you doing here? Go see your wife!" Thank you, thank you, thank you. We both felt 100% improved with that, and Mary, we are very grateful.



Here's a picture of me receiving chemo. Note the quilt (with pictures of Tessa on it) that Mom S. made for me (and Janice made me another beautiful quilt that I will use on cooler days), the friendship bracelets I'm wearing, and the "Breast cancer awareness" water bottle that Caley gave me. It's not all bad....!

As a matter of fact, I feel so good that I had a normal dinner, and now I'm about to join my little family on the evening walk, so I'd better run. I will send a more comprehensive update later, but for now, just know that I am well both in body and spirit, so your thoughts and prayers must be helping!

Love to all,
Kristina

The hour approaches...

...when I will begin chemo. I think I am ready. I want to get this done, so that I can say "I only have 15 rounds of chemo left," which is better than "I have 16 rounds of chemo left." Although 16, being the date of my birth, is a good number. I'll take comfort where I can find it.

Ryan is back at work. When you are done praying for me ;-), please pray for him.

With love,
Kristina

Drains, chemo, state of mind

Today I went to the surgeon and she removed my drain. I'm glad the **** thing is gone - I certainly wasn't in love with it. Dr. Dawson also told me that she shared the letter with the radiologist, and that he was very glad to receive the feedback and felt very apologetic. She tells me that he intends to call me and to write a letter to me, and I don't require either - just knowing that my letter made a difference to him and the way that he will treat patients in the future is really, truly enough to make me feel better.

Because the drain is gone, unless there is some strange glitch in scheduling, I will begin chemo tomorrow. I don't know how to feel about this. I want chemo because it's a step on the road to wellness.... but of course I also don't want chemo because it's terrifying and because, let's face it, I'm not very good at being "sick." I'm good at organizing things, I'm good at crisis management, I'm good at lots of things... but laying in bed feeling miserable is not one of those things. Actually, I'm very bad at it, as anyone who saw me on bedrest (two weeks at the end of my pregnancy) will tell you.

Ryan is struggling right now, and I am struggling with him. I don't know how to help him or what kind of support he needs, and I'm very frustrated. I'm also very selfish - I want things to be about ME right now because I'm on the edge of a terrifying cliff, and tomorrow I have to jump, and I'm scared. Our family can use your thoughts and prayers, because we are barely holding it together. Ryan is at the doctor right now, and I am hoping that she can help.

Today, things feel very dark. Thank you for holding us in your thoughts and prayers.

Love,
Kristina

Laughter

Tonight while talking about Shep, Ryan said, "Do you think that Shep and Mo will get along?" and Tessa said, "Daddy, dogs don't mow the lawn!" This had me laughing until tears came from my eyes. Perhaps you had to be there to see the humor, but it certainly did us good to think of the image that Tessa mistakenly conjured up.

Today Tessa has been talking a lot about Shep. For those of you who don't know... Shep is the name of our "one day" dog. We have been talking about adopting a black lab mix puppy for years, and one of these days we'll really do it. We talk about Shep so much that it's like he's a member of the family already! I am seriously thinking that the spring is the perfect time to adopt Shep - it will be our family's reward for making it through chemo. Mozart will not see Shep as a reward, but he will recover...we hope. Tessa says that she will take Shep to a lake and they will go swimming together, and Shep will lick the lake (her words) and Tessa will laugh. I look forward to those days.

It is good to have Tessa Katherine in our lives. She really does bring us so much laughter and joy.

Kristina

Time to do your breast self exam

Well, it has been two months since I found my lump. Two months - is that all? The time is flying by - it feels like just yesterday.

Today is my monthly request to everyone: Please do your breast self exam (ladies) and your testicular self exam (men) today, and write me a little note to say that you either promise that you've done one in the last month or that you will do one TODAY. Not "some time soon," but TODAY.

Early detection is key. One in eight women is too many. And we don't want to leave the boys out - if Lance Armstrong can get testicular cancer, then the men in our lives can, too. Husbands, help your wives. Wives, help your husbands. And friends, remind one another!

Please post a short comment (or a long one!) to let me know that you have taken this action, and that you are keeping yourself well.

Here's how to do a breast self exam.

Here's how to do a testicular self exam.

Please remember that I found my lump through a breast self exam. Also know that my breasts never felt smooth, and I never really knew exactly what I was looking for (and what I found did NOT feel like a rock or a pea), but because I'd done BSEs for years, I knew that something felt different. Finding that different something has probably saved my life. It's your own body - don't be shy about it, and don't feel silly...as the ads say, Just Do It.

With love,
Kristina

Tentative Chemo Date Scheduled

I have had a couple of docs tell me that chemo can begin as soon as the drain is out, and I hope/expect to get the drain out tomorrow. As I have an appointment with my oncologist on Wednesday, I called their office and asked if it was appropriate to schedule chemo for Wednesday after my appointment...and the answer was "yes." So, I am now on the calendar for getting the first round of Adriamycin and Cytoxin on Wednesday afternoon.

This morning I saw my OB/GYN to make sure that my cervical health was okay and to discuss menopause - which I will be entering soon because of the chemo - and to discuss removing my ovaries. I need to decide whether to have an oopharectomy (just ovaries) or hysterectomy, and I have been given a lot of material to help me make that decision. One of the side effects of some of my drugs can be endometrial cancer, and that makes me nervous, so I may be leaning toward the hysterectomy. The genetic testing will also help me to make that decision, as I want to learn my risks.

I am now scheduled for a DEXA (bone density scan) and a thyroid ultrasound; this is to follow up on, respectively, the degeneration in my hips and the fact that my thyroid continues to be lumpy.

The medical week begins. I hope that your day is going well!
Love,
Kristina

PEPS BBQ

We're back from our PEPS BBQ - a lovely time was had by all at Susie & Mark's (thank you!).

Here is Derek, Tessa, Anna, and Lexi playing around the wading pool:

Yes, Tessa is the wettest of them all...! She happily dumps water on her own head, and on the head of anyone walking by....beware!

I hope everyone is having a happy Sunday evening.

Love,
Kristina

Ryan's birthday and Today

Yesterday was Ryan's birthday (Happy 41!). In the morning, while Ryan, Tessa, and I went to breakfast at Endolyne Joe's, our yard crew (consisting of Paul, Libby, Michele, Scott, and Sue) came and made our yard look - and I kid you not - better than it has in all the time we've lived in the house. THANK YOU! With each successive yard team (this is the third) they build on the work of the last, and real progress is being made. There is now lavendar planted all along the front wall by the sidewalk for every passer-by to enjoy, and I am enjoying our yard more than ever. I trimmed some lavendar buds to put in a vase by our bed, and when I sleep I can dream of either Provence or West Seattle (both, apparently, are places that the lavendar grows rampant!).

In the mid-day, Ryan went biking with Paul and his brother Scott...really, it was the first time I'd really seen Ryan smiling in what felt like a long while and I think it did him good, body and soul. While he was gone, Tessa and I each napped and rested.

Libby & Susan L. threw Ryan a party at our home, where they provided food and did all the work of cooking, serving, and cleaning up. This is a gift to both Ryan and myself - I can not bear the idea of "skipping" Ryan's birthday but I also did not have the energy required to throw a party of any size this weekend, and their help (as well as Michele's, for though she couldn't attend she contributed food!) was invaluable and generous. In addition, Scott & Steve (Ryan's brothers) were here, along with their wives (Susan S. and Kerri, respectively), Jackson & Carter (Susan L's kids), and of course Paul - everybody pitched in and made things wonderful. It was a small group, but of just the right size. Paul grilled burgers, hot-dogs, and salmon (guess which one I had?!) and there were salads and other treats. Tessa and I had made Ryan's "traditional" cake - the one his mom made him all through his childhood - and Tessa did the decorating and placed the candles all by herself...and of course she helped him to blow out the candles, as this has become a favorite activity of hers.

Here is Tessa with her Daddy, doing the important birthday work of making sure there's no frosting left on the mixers:


Here is Tessa helping her Daddy to blow out the candles (Tessa insisted on having one pink one...!):


Scott & Susan drove up for the day from Portland, and we are grateful. Here are the three brothers (Ryan, Steve, and Scott):


In the midst of the chaos that is our lives right now, this was a day to celebrate and feel joy. Ryan got to see his sister Linda, who lives in Spokane, last Monday, and so he has seen all of his siblings this week...a rare treat. We truly appreciate the love and support that we feel from our family, and we are grateful.

Today I am achier than before, and I will call the doctor to ask about things tomorrow. I think it's just part of the healing process, but it's interfering with my sleep, and sleep is a precious commodity these days. Other than that, not much to report. Today we went to Alki for some beach time (which Tessa loves) and Marisa joined us to say hello and give us a lovely bouquet of flowers, and after naps we will attend the PEPS BBQ. It could certainly be worse. :-)

To close - one picture of Tessa at Alki today:


Love,
Kristina