Saturday, June 11, 2005

A quiet Saturday

Today I realized that I can not, after all, do everything. I reluctantly cancelled attending Krystal's baby shower (I'm so sorry, Krystal!) because I realized that I've been running around so much that my head is spinning, and I'm exhausted and desperately in need of a break. The baby shower is taking place even as I write, and I have genuine regret for not attending but I am also of the belief that I made the right decision.

This morning was pretty quiet, and Holly came over to take some family pictures of us. I can't wait to see how they turn out - Holly was wonderfully patient with us and had some great ideas about how to capture the essence of our family, and it was fun playing in our back yard as she snapped away. I'll be sharing copies when they're ready, but be patient, please! We are lucky to have Holly in our lives, supporting us in this way. It was very important to me to capture our family on film now, while I am whole, and still look like myself - this will give me something to focus on in the tough days and moths ahead.

Right now, Carolyn should be arriving at SeaTac, and Susan is picking her up and delivering her to our doorstop. I can't wait to see my dear friends, and to spend the weekend together. Tomorrow's spa day should be particularly wonderful!

Please continue to hold us in your thoughts and prayers. As Monday approaches, fear starts to grow in me. There are all kinds of unmentionables that can occur, and while I am focusing on the positives it's hard to forget that my fears are real, not just nightmares.

I am grateful for:
1. A loving husband
2. A perfect daughter
3. Parents who have cherished me since my birth
4. A large extended family who have embraced me and supported me, then and now
5. The best group of friends any human being ever had. Really.
6. A funny cat who makes me smile.
7. Incredible doctors.
8. Amazing insurance.
9. A comfortable home that has a guest room.
10. Caley.
11. (Otherwise) Great health.
12. The two rainbows I've seen in the past week.
13. Massages and pedicures. :-)

Love,
Kristina

Friday, June 10, 2005

A new study about Herceptin that applies to me

http://www.usnews.com/usnews/biz/e_friend.php3?goto=%2Fusnews%2Fhealth%2Farticles%2F050613%2F13breast.htm

My new friend Lisa (whom I met online....long story, but she's fabulous and wonderfully supportive of me!) sent me the above link just a few minutes ago. It's got some great information, and some of you may want to read it.

Because I am Her2/neu positive, my doctors have already informed me that I will be taking Herceptin, the drug mentioned in the article. Additionally (just in case you want to know) I am told that I will be getting everything but the kitchen sink: Herceptin, chemotherapy, radiation, and hormone therapy (Tamoxefin or one of the other drugs that do similar things, because I am ER/PR positive). Treatment in the first stages may last a year: I have my mastectomy on Monday (just a few days from now - yikes!), then I need a few weeks to heal,a dn then I'll begin chemotherapy. Chemo will last somewhere between 3 and 6 months, and then I will begin radiation. Radiation will occur five days a week for about 6 weeks. Hormone therapy lasts about five years. Herceptin may be a lifelong drug. About a year from now, I will be eligible for reconstructive surgery.

That's all for now - laundry beckons and Caley and I are going to scrub this house!

Love,
K

Information Overload - Pathology Reports

Okay, I thought I'd capture in one place my diagnosis and test results as I know them so far. Some of you are doing your own research, and perhaps this will help you to understand what kind of thing I've actually got. It's a beast, there's no denying that. If any of you are in the medical field (I know I've got Don, Libby, Mom S., Kathleen, and Ramona on my side!) or have experienced reading these kinds of results (Steve & Kerri, and Aunt Ann) then maybe they'll mean something to you. Otherwise, this is a boring entry for the rest of you to read!

Doctors:
Surgeon: Dr. Patricia Dawson
Radiologist: Dr. Hallum
Oncologist: Dr. Kristine Rinn
Psycho Oncologist: Dr. Judith Lipton
Naturopathic Physician: Dr. Michelle Robeson

Facility:
Swedish Cancer INstitute and Swedish Breast Care Centers
----------------------------------------------

Tumors (Biopsy Results):
A. Breast, left at 11 o'clock, needle core biopsy:
- infiltrating ductal carcinoma
- poor tuble formation
- high nuclear grade
- low mitotic rate
- Bloom Richardson score (Nottingham modification) 7 of 9.
- Ductal carcinoma in situ (DCIS) identified, cribriform and solid types of intermediate nuclear grade with necrosis.
- microcalcifications identified associated with DCIS
- no vascular/lymphatic space invasion identified
- ER: 95% of tumor cells positive, invasive carcinoma
- PR: 50% of tumor cells positive, invasive carcinoma
- c-erb B-2: POSITIVE (score of 3+) for overexpression of c-erb B-2 (Her2/Neu) protein

B. Breast, left at 1 o'clock, needle core biopsy:
-infiltrating ductal carcinoma
-intermediate tubule formation
-high nuclear grade
- low mitotic rate
- Bloom-Richardson score (Nottingham modification) 6 of 9
- Ductal carcinoma in situ identified, cribriform and solid types of intermediate nuclear grade with focal necrosis
- microcalcifications identified associated with DCIS
- no vascular/lymphatic space invasion identified
- ER: 90% of tumor cells positive, invasive carcinoma
- PR: 70% of tumor cells positive, invasive carcinoma
-------------------------------------------
Bloodwork:
All results within normal ranges, except Hgb is 15.8 (normal range is 12-15); Hct is 45.5 (normal range is 36-45), CA 27.29 is 44.4 (normal is 0-38.6).
---------------------------------------------
Total Body Bone Scan:
(directly quoting):
IMPRESSION:
1. No evidence of metastatic disease to bone on this bone scan.
2. Bilateral maxillary sinusitis is noted.
3. Degenerative changes in the hips bilaterally.
(My nurse said this amounts to "wear and tear on the hips." Should I send Tessa a thank you card?!)
-----------------------------------------
Radiology Report CT Thorax w/Cont 71260
(directly quoting):
IMPRESSION:
Two tiny pulmonary nodules, one within anterior right upper and the other withing the anterior aspect of the right middle lobe. Suggest 3 month follow up exam..

IV Contrast Enhanced CT of teh Abdomen and Pelvis:
(directly quoting):
IMPRESSION:
Tiny left hepatic lobe hpodensity which is too small to characterize. Exam is otherwise unremarkable.
----------------------------------------
XR Chest, 2 View 71020
(directly quoting):
IMPRESSION:
No plain film evidence for parenchymal lung nodule. Please see CT report which demonstrated tiny right middle and upper lobe nodules.
---------------------------------------
MRI-BREAST< Bilateral wo/w Contrast C8908
Left breast:
At 11:00 4.5cm from the nipple on image No. 27, is a heterogeneous mass with irregular and lobular borders. It measure 2.6 x 2.2 x 2.2 cm. There is an approximately 4 mm nodular component which is just slightly anterior and medial to the primary mass. This may represent an exophytic component of the primary mass or a small local satellite lesion. On ultrasound evaluation, the former was more likely. Kinetic evaluation demonstrated rapid uptake with persistant, plateau, and washout type curves. Approximately 12 percent of the mass demonstrated the most suspicious type of curve in that it was rapid uptake with washout. A similar appearing mass is seen at 1:00 5 cm from the nipple on image No. 25 measuring 2.3 x 1.3 x 1.6 cm. It also had lobular and irregular borders and demonstrated heterogeous enhancement. Kinetic evaluation was consistent with rapid uptake with persistent, plateau, and washout type curves. Approximately 15 % of this mass demonstrated teh most suspicious type of curve again which is with the rapid uptake and washout. Some non-specific foci of enhancement are seen scattered throughout the left breast which likely are related to physiologic changes.

Right breast:
Low probability for invasive neoplasm. No areas having morphological dynamic enhancement fesatures suspicious for carcinoma are seen. Again, the right breast demonstrates some non-specific foci of enhancement scattered throught the breast which likely are related to physiologic changes.

Conclusion:
1. RIGHT BREAST: Category II: Benign, routine screening mammography.
2. LEFT BREAST: Category VI: Known breast carcinoma.
3. Chest: Category II: Benign.

-------------------------
Soooo, that's all I've got right now. There was a note on the MRI results saying that an MRI can not necessarily find ductal carcinoma in situ, and since I have DCIS in my left breast that leads me to conclude, again, that an elective mastectomy on that breast may be in order. Again, I repeat, though, that I will not make that decision yet....we'll cross that bridge when we come to it.

My outlook is good right now. Caley is caring for Tessa with such love, affection, and seeming ease that my heart feels light in that regard - it's such a blessing to have her here. Ryan and I really had a lovely time on our date last night, and I feel confident and loved having him at my side. My friends' and family's support has meant the world to me, as well. I am ready to get this cancer out of my body NOW.

I am looking forward to a wonderful weekend, filled with family and friends. I'm not focusing on Monday - there isn't any point. It will hurt, and undoubtedly it will suck, but I'm stronger than the scalpel, stronger than the cancer, and stronger than this process. I really believe that.

Tessa is doing beautifully, partially due to the fact that her mother isn't a total stresscase now that Caley is here to help. We now talk relatively openly in front of her about what's happening, although we avoid saying the "whole" truth. She knows that Mommy is going to the hospital for an operation to get the cancer out, and that Mommy's breast will have a really big cut and need a really big bandaid, and that it will be sore for a long time. I haven't told her that they're cutting off my breast - it just doesn't sound right. When it's time, I will show her my (healed) scar, and talk about how the doctors will build me a new breast when all the cancer is gone. She also knows that her mommy will take some "strong medicine" (e.g. chemo) and that I'll be sick, tired, and sleep a lot. With Caley here and her general routine relatively uninterrupted, she seems to be okay with that.

I'm struggling with fatigue trying to keep up with myself and this whole process, and fighting a sinus infection to boot, but I'm doing remarkably well. I am blessed, and I am so grateful to all of you for caring. I love you!

Love,
Kristina

Today will be a great day

Hello, everyone. I'm much more refreshed this morning, and ready to seize this sunny day. Today we (Tessa, Caley and I) will be going to the zoo with Heather and Kelton and having a picnic lunch there, and then we'll have a mellow afternoon. I'll probably use that time to update the blog with more pathology results etc., and to prepare for a busy weekend. Tomorrow I will attend Krystal's baby shower (the one I was supposed to be hosting...thank you SO much to those who have taken it over for me!) and then when I come home, my beloved friend Carolyn will be at my house. Sunday, I will be having a "spa day" with some friends (plus my mom and grandma) and as you can imagine, I'm REALLY looking forward to that.

Last night Ryan and I went on a date to the swanky Third Floor Fish Cafe' in Kirkland. The food was incredible, and it was fabulous to cuddle up to my handsome husband in a booth overlooking the water and the Seattle skyline.

More to follow - have a great day, everyone!

Love,
Kristina

Thursday, June 09, 2005

Yawnnnnn...a quick message, then bed

Hi all. A VERY quick message because I'm SOOOO tired today. I think my sinus infection and all of the news etc. is catching up with me.

The doctor appointments went well. I am still on for surgery on Monday - I check in at 7am and have a dye injection, then surgery is scheduled for 1:15. Surgery will last 2-3 hours. I expect people to be partying at that time, because we are NOT mourning the loss of a breast, we are celebrating cancer's early removal. I insist. ;-)

I have a while to think about it, but I think that I will electively have the right breast removed when I have reconstructive surgery on the left breast (a year from now). They could reconstruct the right breast at the same time as the left breast, so I'd come out even anyway. There appears to be a 1 in 5 chance (20%) of cancer recurring in the opposite breast even if I don't have the cancer genes, and that is simply too high. I'd rather just get this "torture" over with. This is no time for vanity or false modesty. I want to live to be OLD, and that is that.

I visited the naturopathic oncologist, and the good news is that I am still allowed to have coffee or espresso. Phew! Ryan and I "invested" in a good espresso machine last month, and I would have hated to say goodbye to my morning mocha. I need to give up red meat immediately and throughout the course of treatment, but that will be harder on Ryan than on myself. I'll be giving up red wine (all alcohol but that's the only kind I care about) while on chemo. Anyway, the naturopath was great and she's going to work on keeping my immune system going and keeping my symptoms down. I may be trying accupuncture and other alternative measures as a means of controlling fatigue, nausea, and other unfortunate chemo side effects.

I'm grateful to be going forward with the surgery. I want this thing done, and every day of treatment is a day closer to my final result of good health.

More tomorrow - I'm too tired to think.

With love,
Kristina

Insurance - phew!

I just got off the phone with the insurance company. All of my locations and doctors are in network....meaning that this should not cost us ANY money. Thank you, Ryan, for having such a fabulous employer!

A new sinus infection tempered by great friends and assistance

Hi, everyone.

Today I woke up with a full blown sinus infection. I feel like my head is going to explode, but more than that, I'm angry. I want to move forward and get this surgery over with, and I'm afraid that the doctors will make me postpone if my body isn't in optimal health. I do not want to delay anything, but of course I'll do what the doctors recommend. I'm used to having sinus infections (remember, I had three sinus surgeries by the age of 21) but I haven't had one in a long time and I really didn't want this one.

Anyway...

Yesterday was a really good day. In the morning, Caley showed up at 9am, and then Barb and her boys Tyler and Matthew (Nicholas was in school, and Ty had a doctor's appointment in Bellevue later that day) showed up and the kids had fun running around in the basement while "the ladies" chatted and caught up on things. When Barb and the boys left, Caley, Tessa and I went to the grocery store to acclimate Caley to how we shop and to stock up on supplies so that nobody needs to shop any time soon. $230 later (yikes I think that's my biggest grocery bill ever!) we were done, and our cupboards are filled to bursting with healthy snacks and such. After grocery shopping, we came home for lunch, and then Caley put Tessa down for her nap. (Caley is a lovely auntie - she reads Tessa more stories than Mommy does, and Tessa is IN LOVE!) Then, my dear friend Michele showed up to whisk me away for some relaxation. We went downtown for shopping and coffee, and had some lovely girl-talk. In a funny side note, Michele & I were dressed very alike (and this was quite unplanned) and one lady actually asked "Are you twins, or just sisters?" This had us laughing, even if it does make us dorks. :-)

Last night we feasted on yet another dinner provided by our army. So far, we've enjoyed Marilyn & Dan's shrimp/veggie/herb pasta salad; Paul & Libby's Mexican food; Mom's delivery of Lee's Asian; Marilyn's chicken Maribella; Susan's portobella chicken; and then last night's cabbage rolls from Barb. I can feel Emily Post or Miss Manners sitting on my shoulder chiding me to do my thank you notes, and I HAVE purchased a big stack of them, but I am woefully behind. Please, to all of you who have signed up to help us, know that we are eternally grateful.

People have the kindest words for us, and people's thoughtfulness makes me tearful (in a happy way!). My mail has been full of cards, not just the "get well soon" variety but cards full of reminders of memories, friendship, and love. I may live in a sea of writer-wannabes, because these notes (both by US Post and by email) are so eloquent and beautiful that they practically deserve framing. You know who you are, and I am grateful.

Today my mom is watching Tessa, and they will go to the Wiggle Worms class that they love (and where they are joined by Mike & Caleb). Tessa will have a wonderful time with Grammy and Grandpa, and I can get caught up on some more research, setting up a blog, and writing down my long lists of questions for my doctors. I need this time, but I do get angry and resentful that I am not spending my morning at the park, pushing my daughter on a swing, laughing with other mommy friends, and planning my next mocha.

People keep telling me how brave I am. Let me whisper this one...I'm not brave. I'm faking it. Shhhh, don't tell anyone.

I hope as time goes by and I have more time to be thoughtful my blog will be less of a series of disconnected thoughts and more of an elegant statement about the quality of my friendships, the lessons I've learned, and the path to recovery...but right now it's pretty stream of consciousness with no care towards editing. If you've made it this far, you're amazing!

Today I have three doctor's appointments:
1. 1pm with Dr. Dawson (the surgeon)
2. 2:30pm with Dr. Burt (squeezing in a dentist appointment before the surgery, just to get my teeth cleaned)
3. 4pm with Dr. Robeson (naturopathic oncologist...maybe she'll hook me up with some great vitamin C!)

Ryan will go with me to the first appointment, as we hope to learn surgery times, etc.

Tonight, Ryan and I will go on a date. I plan to wear something that reveals my cleavage, as I probably won't be doing that for quite some time. ;-)

That's all for now - I'll update later if I get a chance. Love to you all, and thank you for listening.

Kristina

Tuesday, June 07, 2005

Test results...these are ALL good, right?

Hello, all. I hope you're having a great day. Tessa and I are doing pretty well - Tessa and Caley are playing and bonding as I write this and I just feel great knowing that Tessa, Ryan and I have Caley in our lives.

I just got off the line with the doctor's office, and got my test results:
1. No problems at all on the bone scan (hurrah!)
2. I have a slight issue of sinusitis right now (big deal....!)
3. The chest X-ray is clear and fine (hurrah!)
4. The CT scan report says "Not a high level of suspicion" but there were a few minor things:
a) the right upper lobe of the lung has a 4mm nodule
b) the right middle lobe of the lung has a 3 mm nodule (both are recommended for a 3 month follow up)
c) the left lateral liver lode has a 3mm hypodense lesion, "too tiny to characterize" (no follow up recommended; I'll ask my surgeon about it anyway)

Of course I quizzed the nurse on point #4. She said that any number of things can show up as small nodules (besides cancer), including scar tissue, incorrect reading, or something that is normal and can fade. She kept saying "there isn't a high level of suspicion, they really aren't very concerned." I will talk to the doc to make sure that *I* shouldn't be concerned, but it tentatively looks like this cancer has not moved into the rest of my body. I find it encouraging that these small nodules are on my right side, since it's my left breast that has cancer and NOT the right, and I hope and pray that they are, indeed, "nothing".

I won't have anything to report tomorrow; my next appointment is on Thursday (two appointments: one with the surgeon, one with the naturopathic oncologist) and I'll update you then. Thank you for your continued love and support!Love,
Kristina

Monday, June 06, 2005

Test Results from MR, etc.

Today I'll keep it short as my friend Lori is visiting and I don't want to spend all night on the computer. :-)

Today I went in for three tests: a bone scan, a CT scan, and a chest X-ray. I should hear results tomorrow. The tests went well from a human relations perspective, which is a huge improvement from Friday!

I also received updates from my pathology report, and from the breast MR. Best news first - the right breast is CLEAR! Nothing abnormal showed up on the MR, so I'm spared additional biopsies etc. on that breast. In "I have to research this further to see what it means" news, I came back as ER/PR positive. What that means is that the cancer is estrogen receptive and progesterone receptive, and that I can take hormone drugs (Tamoxifin is one of these) to combat it. I also found out some more negative news: I am Her2/neu (sp?) positive, meaning that my cancer has a genetic component. If you are a blood relative of mine, you should start doing some research on this and ask your doctor about what the implications are for you - I will be doing my own research and sharing with my family members. Of course, right now, the person I'm most concerned about is Tessa as my direct descendant and the one person CERTAIN to share my DNA, no matter which side of my family this came from. It's extraordinarily rare for breast cancer to manifest before the age of 21, so as far as I'm concerned I have 19 years to find a cure for breast cancer. Okay, that's a deal, and I'm committing to it. (I won't become a scientist, but I will dedicate time, effort, and money to the cause.)

As I mentioned, I'll get more information tomorrow. I'm still not "staged" - we won't know the final stage of the cancer until post-op, when they've tested the lymph nodes etc., and we still need today's test results to add to that information.

I don't have any appointments until Thursday, so I'm looking forward to a couple of "normal" days (whatever those are in my new circumstance).

I am so blessed to have you at my side; I do not forget that for a minute.

Love,
Kristina

Sunday, June 05, 2005

Tessa's Mommy has Cancer

Hi, army. I hope that all of you had a restful weekend and that you're doing well!

Friday was a hard day for me - I hit my lowest low since finding the lump. I had to have a breast MR at Swedish, and the MRI people were incompetent (bungling the IV, etc.) and cold toward me, and in that big sterile room full of horrible equipment it was hard for me to remember that I have an army fighting with me and for me, and I felt horribly alone. Lying in that claustrophobic tube, radioactive dye pumping into my veins, half naked, cold, and alone, some of the realities of the near future really hit home. An MRI is nothing compared to what I have to face, and that was part of the fear. It also hit home that the reason that I am having extra tests done is to detect cancer in other parts of my body....there is still the possibility that it has spread and is more serious than we've found to date. I do not dwell on those thoughts, but they creep in. I have a bone scan, xray, and other tests tomorrow and hopefully those tests will all come up clear; hopefully I will hear good results of the breast MR tomorrow. I am praying, of course, that it is confined to the left breast.

On Friday night we broke the news to Tessa, using the book Michele gave us ("Sammy's Mommy Has Cancer" - thank you so much, Michele) as a tool. I didn't cry until Tessa said, "Mommy has candy. No, Mommy has cancer." We explained that Mommy's breast has cancer, and that Mommy will need an operation and lots of strong medicine to make it better. We also explained that Mommy will have lots of appointments with doctors, and hospital visits, and that Mommy would be tired and wouldn't be able to play as much as usual. We also focused on how Tessa could help with hugs, kisses, and love, and explained that Mommy would read stories with Tessa and that Mommy would feel better from Tessa's smiles. We read the book to her and she didn't wiggle, concentrating on each page. At the end of the book (which talks about hair loss and fatigue,etc.) she said, "Read it again." We have read it to her at least a dozen times now, all at her request. She is starting to understand.

With those sad thoughts, the weekend away was just what the doctor ordered.

Tessa has her own ways of dealing with it. Some are heartbreaking, and others are heartwarming. Occassionally, Tessa says, "Mommy's better. Mommy no go to the hospital, no need operation," which just breaks our hearts. But then Tessa throws her arms around my neck, kisses me, and says, "Mommy is smiling! Tessa make Mommy feel better!" which truly does make me feel better. Today she got it into her head that her magic wand (part of her dressup box) would help, and she wouldn't go to sleep until she had waved it over me. We are working hard to make sure that she understands that she can not make the cancer go away, but that her love and smiles make Mommy feel fantastic even if she does have cancer.

Speaking of Tessa, we will be going in for genetic testing to see if there is a genetic component to my disease. We are doing this primarily for Tessa - I would give my right arm to see that she didn't get this disease. One of the first things that I did after diagnosis was participate in a study (surveys, blood samples) about genetic links to breast cancer. I will gladly endure anything if it means that Tessa never needs to suffer from this.

On to happier thoughts...

Ryan, Tessa, and I had a wonderful time at the cabin with Marisa (THANK YOU!) and her fabulous dog, Max. We soaked in the hot tub, we ate way too much (so much for the five pounds I lost last week from the "stress diet"!), we shopped at the farmer's market, we read books, we drank wine (Tessa stuck to milk) and we really relaxed. I didn't bring any of my research with me, and though the subject of cancer didn't go away entirely we mostly stuck to offhand comments, terrible jokes, and answering Tessa's questions. There was a lot of laughter, and no tears...which is saying something these days!

Then, we came home to a wonderful message. My incredible parents, fantastic Auntie Rene' & Uncle Mel, and amazing Grandma have pooled their financial resources to pay my beloved cousin Caley (who is on summer break from college) to help us out this summer as much as we need her. Caley is a wonderful girl...no, woman!...who is intelligent, quick on her feet, kind, loving, full of humor...I can't say enough great things about her. Caley stepped aside from some other summer work activities - the resume building kind - to help us, and we are so grateful. I think it's fabulous that she will be the one at my side when Ryan is at work, as I will enjoy her company as much as I'll need her help. She will care for Tessa when I can not, and she'll help us do housework, grocery shopping, etc. This is a blessing, as it will allow Tessa continuity from day to day, and it will shorten the time that I need to rely on the incredible support of my friends for babysitting.

I have received more love and support from my friends and family in the past week than any human deserves to have in a lifetime. Our home is filled with flowers (special thanks to the Dahl, Weitz, Kaz, and Huycke families); we have enjoyed wonderful meals (special thanks to the Pitt Filley, Lewis, Landahl, and Rogers families); we have taken advantage of wonderful babysitting (special thanks to Heather, Susie, Linda, Grandma); and we have received thoughtful gifts, kind words, time on the phone, and so much more from so many of you. Susan has had a full time job organizing the army for food and such, and Heather has been working on projects for me too. I do not deserve such incredible kindness - does anyone? - but I gratefully and humbly accept it all. Thank you.

This weekend, Susan ran in Race for the Cure, the Susan G. Komen Breast Cancer fundraiser. I am so proud of her for doing this, and for taking steps to eradicate breast cancer. I will work for the rest of my life to try to prevent my friends and family from going through this experience, and I celebrate Susan for participating in the event. Next year, I will join her, and I hope that you will join us.

We have received so much kindness from all of you - it sustains us more than you can know. Ryan, Tessa, and I are all so blessed by your presence in our lives, and by your thoughts and prayers. Thank you.

Love,
Kristina