Meanwhile, back at the ranch...

Santa gave Aidan a compilation book of all of the Curious George stories for the winter holiday. It was one of those last minute things that Santa picked up on a whim when he was shopping in Costco. In amongst all of the other holiday stuff, it got put aside on a shelf. About a week ago, I pulled it out and told Aidan we should read some of the stories. Well, after the first one, he was hooked. We’ve now read the entire book, all of the Curious George stories, at least three times and he’s not sick of it yet. He even carries the book around the house so that he can look at the pictures throughout the day. I should mention that he already had some Curious George books that Aunt Karen and Uncle Joel gave to him a couple of years ago, and he really liked those, but those were abridged versions of the stories. The new book has the complete originals.

I loved Curious George too, so reading the stories has been kind of fun – well, at least the first time through it was. What’s been interesting to me is just how much politically incorrect material is in those books, by today’s standards. In the original Curious George story, the man in the yellow hat kidnaps Curious George from the jungle in Africa and brings him to “the city” (the country is not specified) to live in the zoo. This is a no-no by today’s standards. Another thing that is common throughout the stories is smoking. Many of the adult males are smoking in the book; the man in the yellow hat smokes a pipe, George steals the jail keys from a guard who stops to light his pipe, and the scientists in the rocket story are smoking cigars. In one story, George even lights up a pipe himself! George does all sorts of things that I have to warn Aidan away from – and I’m not talking about the “curious” things that George does, just normal elements of the story. For instance, George winds up performing in the circus after some people see him doing tricks on his bike. They stop and invite him to get into the car with them and he does. “Aidan, don’t do that.” I’ve had to say, “Don’t get into a car with strangers like that”.

All of that aside, Aidan is enthralled with the pictures and the stories. I’ve used some of the “incorrect” material as a jumping off point for discussion, so it’s not all bad. I read these stories as a kid and so far I’ve managed to avoid stealing animals from the jungle, smoking pipes, and getting into cars with strangers, so I think it will be okay.

The "For Dummies" Version

For those of you who have plowed through Kathy’s explanation in Journal 5, here is a “For Dummies” summary, as I (Rita) see it.

We had our follow up visit with the doctor on Wednesday, the 24th. Kathy has healed well from the surgery and she is free to resume normal activities within her comfort level. The surgeon went over the results of the oncology report with us and we had an opportunity to ask a few questions.

Going into the surgery, we were told that Kathy had DCIS, Ductal Carcinoma In Situ, with a micro invasion. This assessment was based on the biopsy. What it meant is that the cancer was confined to her milk ducts, with a microscopic amount having invaded outside of the ducts. However, as a result of the surgery they found that there was much more of an invasion outside of the milk ducts than they had identified previously. Thus, her diagnosis is now Stage I Invasive Ductal Carcinoma. What they found outside of her ducts was a tumor, approximately 1 cm in size. They also did what they call a “Sentinal Node Biopsy” during her surgery to assess whether or not the cancer was beginning to spread via her lymph nodes. The news on that front was very good. They tested two lymph nodes and both were negative for cancer.

The subsequent oncology tests were to determine what sort of “receptor status” her cancer has. “Receptor status” refers to assessing what it is that is feeding the cancer. This information is then used to determine, what, if any, follow up treatment will be needed. To put it very simply, if they determine that the cancer is living off of Twinkies, for instance, they cut off the Twinkie supply. In Kathy’s case, she tested negative for Estrogen and Progesterone and positive for something that they call HER2:

HER2 stands for Human Epidermal Growth Factor Receptor 2. HER2 is a gene that helps control how cells grow, divide and repair themselves. The HER2 gene directs the production of special proteins, called HER2 receptors.

Each healthy breast cell contains 2 copies of the HER2 gene, which helps normal cells grow. Sometimes a cell may have too many copies of the HER2 gene, which may lead to too much HER2 protein. Too much HER2 protein may play an important role in turning a normal cell into a cancer cell and in how aggressive the cancer may be.

Women with breast cancer that have too much HER2 protein on the outside of the cell (HER2 protein overexpression) may be less likely to respond to certain treatments.

(http://www.herceptin.com/herceptin/patient/testing/her2.jsp)

So, on the one hand, it’s good that they know what this beast eats, but on the other hand it’s not so good since HER2 positive cancers are considered to be much more aggressive than those that are fed by hormones. But we already had an inkling that her cancer was aggressive since she went from zero cancer to a half a breast full in the space of two years.

We don’t know for certain what her treatment is going to be since we have yet to meet with the oncologist, but based upon a bit of Googling and on what her surgeon told us, we can surmise that she will be treated with a combination of Herceptin, which is a special drug meant to starve HER2 positive cancer cells, and several other, more general, chemotherapy drugs. As far as I can tell, the reason for this treatment is not because they have any cause to believe that they didn’t get all of the cancer surgically, rather it is to ensure that any cells that might have escaped are killed. My completely unscientific, but not entirely baseless, assessment of her prognosis is that it is good. Because they caught this in time and because it has not invaded her lymph nodes, it is very treatable. I may have to change that assessment after we meet with the oncologist next week, but for now, I remain very optimistic.

I’m going back to work on Monday since Kathy is now pretty much able to function on her own. She does still get tired pretty easily, but she can take care of her own and Aidan’s basic needs and she can stay awake all day. I don’t want to burn up all of my sick time since I really don’t know how the chemotherapy thing is going to work out.

I want to second Kathy in thanking everyone for their support. Even though most of you are distant, your calls, e-mails, offers of support and good thoughts have been very much appreciated. Thank you!

Breast Cancer Journal - Entry 5

Wednesday, January 24, 2007

Today, I had my follow-up appointment with Dr. Morris. We had her go over the pathology report and the two subsequent updates with us again, as I was really fuzzy when she called the first time around and didn't remember enough to know where I stood for sure. I also asked for printouts of all three reports for our reference. I will summarize the reports below, in a separate section of this post.

I had taken off each of the two long pieces of tape that were going from mid-breast area to under my arms earlier, in the shower. Dr. Morris took off the other two pieces that went from my the center of my chest to mid-breast area. The incisions themselves are numb, so all of that went without a hitch. The only problem was that the tape parts from its adhesive as you pull it off, so I was left with double stick tape stripes across my chest, which my undershirt promptly glued itself to. Rita gently rubbed the sticky strips with cotton balls and isopropyl alcohol, and quite a bit of the adhesive and permanent marker came off. A lot of what makes the incision look so yucky is the permanent marker, in my opinion, so I'll be glad when we can get the last of that stuff off in addition to the tape adhesive.

I'm healing well, as Dr. Morris verified, and I noticed a second occurrence of marked improvement in the way I felt. The scar where she went in to take the lymph nodes is nearly completely healed, and is a light pink in color with not too much cording. I'm pleased with the looks of that little scar. I don't know if you remember me mentioning that the area of my breastbone hurt, even just by the air, making wearing a necklace unbearable. I just noticed that I inherited my dad's barrel chest, so instead of only my tummy getting rubbed by my shirt, my breastbone was now being rubbed continuously because the two big buffers that had been protecting it all these years were gone! In addition, my right side incision ends right at my breastbone, so it too is being rubbed by whatever garment I'm wearing. Dr. Morris explained that there are areas of skin that are now being exposed to touch that normally were not, so with all the manipulation and cutting, I would have to assist my nerves and skin to become desensitized. She brought up massage and gentle rubbing! I'm glad I got a well-informed surgeon. So far, Kaiser has been stellar in its procedures and support, and I feel that I'm in good hands.

Dr. Morris agreed that I should begin my stretching exercises and was cleared to lift as much as was comfortable for me. It's not hard to go easy on myself in that regard because if I push the current limit, my body lets me know with a good, sharp pain right away. We went shopping at Value Village and I lifted Aidan into the cart with no problem. The only time I notice pain is if I try to lift anything, even if it's light, too far out from my body.

I have lost over ten pounds since the surgery, which is good, and to my surprise, hardly any of it was breast weight! I'm beginning to look more like my old self, only a little more flat-chested. Just as I thought, my belly sticks out quite a bit now that it can't be camouflaged by the formerly huge breast areas, and I do think it'll be there for a good while longer. Belly fat just doesn't magically disappear. So yes, I am losing weight, you just can't tell.

.~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~.

---

Pathology Report

1. Sentinel Node #1 [Excision]:

• Negative for malignancy

THIS IS GOOD
- - - - - - - - - - - - - - - - - - - -

2. Right Axillary Tissue [Excision]:

• One lymph node, negative for malignancy

THIS IS GOOD
- - - - - - - - - - - - - - - - - - - -

3. Right Breast [Total Mastectomy]:

• Invasive ductal carcinoma, no special type
• Size of invasive carcinoma: Main tumor is 1 cm in greatest dimension
• Additional microfoci of invasive tumor arise from extensive DCIS
• Microfocal invasive tumor is 8 mm from the deep margin
• No apparent vascular/lymphatic space invasion by tumor seen
• Extensive high grade cribriform ductal carcinoma in situ (DCIS) is present
• DCIS is greater than 25% of the main tumor mass and extends beyond the main invasive component, with additional microfoci of invasion
• DCIS is 10 mm from the deep margin of excision
• Scant microcalcifications are present
• Hormone receptors ordered on Block 3C
• Pathologic Stage T1C

THIS IS NOT GOOD
- - - - - - - - - - - - - - - - - - - -

4. Left Breast Tissue [Total Mastectomy]

• Fibrocystic change, negative for malignancy

THIS IS GOOD

<=========================>

Immunohistochemistry Report

• Estrogen Receptor: Negative (0%)
• Progesterone Receptor: Negative (0%)
• HER-2/neu (c-erbB-2): Positive / Strongly overexpressed (3+) - Referred for FISH

Immunostaining for HER-2/neu overexpression is interpreted as follows:

Not Overexpressed

• 0 = Negative: No staining, or membrane staining in <10%
• 1+ = Negative: Faint membrane staining in >10% of tumor cells, membranes not completely stained

Overexpressed

• 2+ = Weak Positive: Weak to moderate complete membrane staining in >10% of tumor cells
• 3+ = Strong Positive: Strong complete membrane staining in >10% of tumor cells

THIS IS SOMEWHAT GOOD

I had only 2/3 negatives, which is better than being a triple negative. If you're a triple negative, they don't have anything specific to shoot at (cancer food is unknown), so you will end up with a general kill-all chemotherapy approach in treatment.

<=========================>

Cytogenetic Results Report

FISH Results:

Positive HER-2 Oncogene Amplification detected by FISH analysis

The ratio of HER-2 to CEP17 is 10.0

Interpretation and Comments:

The FISH assay revealed amplification of the HER-2 oncogene. A ratio of >2.0 is considered to indicate amplification.

The FISH test results are simply verifying that I have a strong HER-2 oncogene receptor status. They know what my cancer is feeding off of and therefore can take more precise aim at it.

<=========================>

Probable Treatment

http://www.emedicine.com/med/topic3287.htm

HER-2/neu identifies patients with a poor prognosis. These patients are likely to respond to treatment with trastuzumab (Herceptin).

From what Rita is reading, because my cancer was caught early and is now classified as Stage I, she feels that my prognosis may be better.

Dr. Morris said that Oncology would probably suggest Adjuvant therapy. Adjuvant therapy is used after local treatment to kill any cancer cells that may have escaped from the breast and spread to other parts of a woman’s body. Adjuvant therapy includes chemotherapy, hormone therapy and biological therapy.

I will update you on the treatment route when we have a clear plan on paper.

---

.~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~ ~. .~.

Thursday, January 25, 2007

Aidan has been quickly coming over to look at my chest every chance he gets, but he makes a squeamish look every time. Rita said he even looked away when we were at the doctor's office. He says it doesn't bother him, but we think it does. He's begun sucking his hands and fingers and doing all sorts of things for nearly non-stop attention in addition to the nightly bed wetting. This is just too much for him, even though he's saying he wants to look and know. We've decided that when Rita goes back to work on Monday, we will no longer talk about my condition in front of him. If we need to discuss or update each other, he will just have to learn that we need a little bit of private time to talk. We've already begun to make it seem as much like it was before my cancer was discovered, and he has only asked me how I'm doing once. Rita is ordering some books aimed at children under six years of age that are stories about parents who have cancer. She has asked him if he would like to hear some stories about how other kids deal with this sort of thing, and he said he definitely would. We will go over what might happen when I start chemotherapy when I get closer to that point, so he doesn't feel like he was left out of the loop. But we are no longer going to go into the kind of detail he's saying he wants, because frankly, I don't think a four year old can handle this kind of stuff at all. Heck, I'm having a hard enough time myself, and I'm, well, you already know how much older I am than he is...

We went down to try to register him for school, but they're not accepting papers until after February 5th. So, he and I will go down after the 5th and get him registered. I haven't told him yet, but he'll be happy to find out that he does indeed get to ride the bus to and from school! I can't believe how fast he's growing up. He shot up over an inch and a whole shoe size in the past two months.

Update (Friday - 01/26/07):

Aidan woke up dry this morning! Last night, Mama and I were watching a movie and he climbed up into my lap. I was able to let him, for the first time since the surgery, and he fell asleep with his arms wrapped tightly around my forearm. I moved him to let Mama get a pillow under my arm about half an hour later, and he woke up enough to say (with eyes closed), "I'm just a little tired." "I know," I said. "It's okay." And he went back to sleep. Hopefully, he's feeling a little more secure about me and can stay "on track", as he says.

A Couple Of Pictures

These are a couple of pictures that got lost in the chaos and never got posted.

This is us at the Oregon Zoo for the annual ZooLights - December 2006

Click Here for some interesting commentary on Flying Reindeer studies, featuring my favorite bull elk at the Oregon Zoo.

Dad Snodgrass caught the next two shots when we were in Concord for the Thanksgiving weekend. I thought they were good pictures.

Love this one of Aidan and Sonia. These two are inseparable and get along so great.

Breast Cancer Journal - Entry 4

Okay people! I'm back on the psych meds (since Saturday), so I won't be so gloomy. I don't know why I stopped taking them. I feel much more emotionally stable now. Whew!

Pain management changes about every two days, it seems. I'm currently trying to get the medications arranged so that I'm not very uncomfortable during the day, but not falling asleep either. I need to be awake all day for Aidan starting next week. I'm saving the heavy duty relief for nighttime. I was quite uncomfortable last night and didn't sleep much at all. It now hurts to have pillows underneath my arms and I'm feeling like I need to roll over on my side, but that hurts too. I finally ended up getting bits of sleep by hugging a regular size pillow to keep my shoulders evenly spaced apart and then leaning slightly towards my back instead of laying directly on my side.

I got to take my first shower yesterday (Sunday, the 21st)! It took me an hour. Good thing we have a large water heater, eh? It was bizarre. Because I'm numb in some areas and tingly in others, it feels like you're touching someone else's body and then sticking bunches of pins into your own body. This tingly thing is pretty bad. I can't stand to have anything rubbing my skin now. So, loose clothes are out and I'm able to wear my post-op camisole. I feel slightly more secure. I'm jumpy as all get out about anything hitting or touching my chest. It's way worse than the belly-guarding thing you do when you're pregnant. This is more of a psychological fear that everything is going to hurt. This is what is causing part of my nauseous feeling. Having the shoulder belt pressing against my chest in the car is yucky too. We got one of those soft pad things that you put on the shoulder strap. This brings the belt out off my chest a little, but causes a lot of pressure that isn't comfortable. So I'll have to hold the belt out with my hand for now. Oh! Maybe I could put one of the handy dandy squishy pillows that Diane brought me down near the shoulder belt buckle receiver. Those little pillows were quite useful for supporting my arms in the beginning, so now I can use them as spacers. Thank you again, Diane! I told Rita that I wished we still had our MX chest protectors. I would feel sooo much better if I could just wear the front piece (open back).

I do know that I'll need to start exercising in earnest now, especially after the chemo/radiation therapy. Exercise that is not related to something else (like sports or games) has always gone against my grain, but I'm going to have to make a lot of changes. Do you think McDonald's food causes/feeds cancer? Shoot. I've already gotten down to having McDonald's once every month and a half or so...

We've gone down the first drop on this ride and now we're clank, clank, clanking up the next hill.
Wii!
(Oh wait. That's the game system. Hey, maybe I should get one of those to help me want to jump around and get exercise? Hmmm...)

Current Schedule
Wednesday, January 24, 2007 - Follow-up with Dr. Morris
Monday, January 29, 2007 - Rita returns to work
Wednesday, January 31, 2007 - Oncology Consultation

Breast Cancer Journal - Entry 3

Dr. Morris called to update me on Thursday regarding the results of the pathology tests that were done during and after the surgery. The good news is that no cancer was found on my left side, and the cancer had not spread to the two lymph nodes she took out from my right side. The not-so-good news is that she found a tumor that was larger than anyone was expecting in the right breast, and that receptor tests showed that the cancer growth is not hormonally fed. Lovely. I have a truly evil cancer that grows (and quickly at that) simply because it can. It doesn't need any support from me to grow and spread its ugly self around. This means that Oncology is probably going to recommend chemotherapy to try to kill this thing.

I still hurt more than I ever expected to after this much time. I felt uncomfortable asking for a second prescription for oxycodone even though I think the doctors are fine with giving me another round. The tightness across my chest is maddening. For some strange reason, my chest hurts directly in the middle of my breast bone. It hurts to breathe. True to my findings on the web while reading discussion boards on BreastCancer.org and other sites, doctors are probably not even aware that massage can help relieve a little of the tightness caused by cording that people feel after a mastectomy. (Cording is the massive scarring that happens as your body tries to heal at and around the incision sites.) Therefore, massage is never even brought up. It's something that mastectomy patients must seek out and find for themselves. I don't understand why such a huge issue is completely ignored by Western medicine. It's very frustrating.

I'm feeling a serious need to talk to someone for emotional support. It bothers me that as much as Rita wants to try to be an emotional support for me, and as much as I feel that I should be able to feel completely satisfied with her support, it's just not enough. It's the old, "You can't understand and therefore fully and properly support me because you don't know what I'm feeling." I hate that. Rita is my rock. Usually, she can fix everything, either all by herself or by suggesting a route that I should take. I'm finding so much relief from reading the discussion boards. Discussion boards that are made up of people I don't know at all and will probably never meet in person. But these people have been through or are going through the exact same things I am. They're feeling the exact same feelings that I am. Rita is so great. She knows she can't give me what I need in this case, and she's encouraging me to pursue therapy. I love her so much.

I can't stop thinking about how fast my Gran's cancer killed her. Someone said it seemed as if the more they tried to treat her, the madder and worse the cancer got. I've asked Wendi if she could find out what kind of cancer Gran had. The information probably won't help with my cancer, but I just need to know.

Aidan hasn't had a dry night in over a week. I asked him if he thought he was bothered by my operation and my sickness. He said he thought so. He checks on me several times a day, all on his own. "Mommy, how are you doing?" "I'm doing okay, Sweetie. Thank you for checking on me." I told him that I really appreciated him checking on me, and it helps me feel better when he does. I explained that we all need to work together as a family to get through this thing. It will be easier on all of us if we work as a team to get me well. He feels better being fully involved, but I can tell that he's trying to be more of a man than he's ready to be. He's trying to fix things, and it's just too much for a little guy of his age. It makes me all teary when I see him trying to think of ways to help me get better. It's just not fair to him at all.

I'm trying to exercise and wean off the pain meds because Rita's going to have to save some time off work for when I'm going through chemo or radiation. We might have to put Aidan in day care. We definitely can't afford preschool. I don't know how we'll dig up the money for day care either, but I guess you figure stuff out when you have to. This is going to be a tough year for all of us. I keep pushing myself too hard, and setting myself back in bed for two days afterwards. This is no good. I'm unbelievably weak. I'm nauseous most of the time, and I really don't think I'm supposed to be.

I got my drains out today. Oh, actually, it was yesterday. I just noticed that it's 01:35, Saturday morning. I had to write something down while I could, as I haven't wanted to do much of anything since I got home from the hospital. My left side has always been the most painful side since the operation, and when the nurse pulled out the drain, I thought I was going to pass out. I was not ready for the amount of pain I felt. After all, the nurse said that at most, it would be a little uncomfortable, a little weird feeling when the drain was pulled out. This was verified by quite a few women on the discussion boards. I think part of the problem was that my body had started to heal the drain in place, and when the nurse pulled it out, it basically ripped everything open again. Another factor is probably the extreme amount of bruising I have on that side. The left drain never cleared from bloody to even less bloody. It was bloody the whole time. That was the first pain I felt as I came out of anesthesia. A horrible, burning pain on my left side. Maybe that's how it feels to be shot with a gun. They say it burns. I went into an immediate cold sweat and adreniline rush. The nurse told me to do two deep breathing rounds before she did it, but the pain was worse than labor. I was still doing my deep breathing for a good thirty seconds after she was done, and she was telling me that it was out, but I could barely talk. I think I stiffened up pretty good too, because I heard her tell me to relax my arm. I still can't take a shower until the drain wounds close up. Maybe Sunday or Monday. We'll have to look each time we change my dressings.

That's another thing. Usually, I have no problems with feeling squeamish about stuff. But now, I'm squeamish about almost everything! Pictures, programs on the Discovery Channel, certain foods and smells. Just about anything can get me feeling pretty darn nauseous. I can barely look at my chest. I know I need to massage the incisions to try to relieve the tightness, but I'm having a hard time. I think Rita might have to help me do the massage.

I apologize for such a horrendously negative post. I need to get it out in a public forum though. I'm going to join a discussion board and actually post to it instead of reading anonymously. This is turning out to be so much more emotionally difficult than I ever thought it would be, and I feel like I'm failing miserably at handling it all.

I want to thank all of you so much for sending your love, thoughts, prayers, letters, phone messages, flowers, plants, cards, dinners, and even backup pain medications when we were snowed in! Some of you have just been sounding boards for Rita and I, or given us rides to get out of our snow-bound neighborhood, or offering to take Aidan for a few hours. I love all of you for all those things. All of it has been and is still so very much appreciated and has brightened our spirits.

Caregiver Diary - 1 Week Later

It’s been one week since Kathy’s bi-lateral mastectomy. She came home from the hospital on Friday the 12th; the day after her surgery. So far, her recovery is going well. She’s alternately laid around all day doing nothing on some days and pushed herself too hard on others. Though being the designated caretaker of both her and Aidan has been a bit tiring, it really hasn’t involved a whole lot of minute to minute interaction on my part. I spend most of my day just hanging around with Aidan while periodically checking in with Kathy to see if she needs anything. The most tiring thing for both of us has been taking care of personal care issues. Kathy can’t take a shower yet because she has drain tubes coming out of her body. So for her upper body, we must very gingerly wash her with a washcloth. The whole process of removing clothing and washing is painful for her. The good news is, the drains should be coming out tomorrow so Kathy may get to rejoice in her first full shower after that.

We’ve been pretty well trapped in the neighborhood for the past couple of days as Portland was hit with the biggest snow storm of the year on Tuesday. We got about 5” of snow in our yard. Aidan and I attempted to do a little sledding and build a snowman, but this snow was too fluffy for either. It fell apart when we tried to make snowballs and it piled up in front of our disk-sled, so we couldn’t get going. Since Aidan had his heart set on making a snowman, we did build a really pathetic one in place in the front yard. It consisted of a small ball on the bottom – about 10” high, and an even smaller sculpted head on top, complete with carrot nose, rock eyes and a grin made out of a twig. Probably the most exciting thing we got to see as a result of the snow storm was the 45 Garden Home bus and two cars in a ditch around the corner from our street. For some reason, Tri-Met (our local transit agency) decided not to chain up and not to go on snow routes that day. Garden home is a very windy, hilly road and it is usually amongst the first to be bypassed at even a hint of snow or ice.