Celebrate good times, come 'on!

So, what does this title mean? Well, I don't have to wear that side-kick, Vac, anymore! When I saw the wound care nurse on Friday, she said that she felt that I didn't need the wound pump, so she called my doctor, told him that there was no cavity (i.e., there was no "undermine" in medicalese speak) and that she felt the wound could heal without the Vac. He agreed and I had a week-end of freedom! With no vacuum wound pump!

I was especially happy because I was going to a party with Scott in Astoria - old family friends of his - and I was dreading the questions that I might get, especially since I'd be around mostly strangers. So, I was pleasantly unburdened! And, I had fun at the party.

Yahoo! It's a celebration!

And, today, I had an appointment with my plastic surgeon. I requested that next time, he tell me what he's going to do and why before he does it. He apologized and then said that he would keep that in mind for the future. Then, we chatted some about reconstruction surgery.

I think, at this point, that we might wait until this wound heals. That may take a couple of months - no one really knows since this tissue has now been radiated twice. Then, we start "pumping" up the left (nonradiated) side in preparation for the implant. I have two options for the right side, both flap procedures. One is a TRAM flap, using my tummy fat and part of one of the abdominal muscles. This would weaken my abdominals somewhat. The other choice is a latisimus dorsi flap, using tissue on my back, near the shoulder blade. But there is probably not enough fat and tissue there, so I may also have to have a smaller implant there to even things out. That would require an additional surgery.

Choices, choices.

The good news is that I have several months before I need to make a decision, since I don't want to miss teaching any of my classes this fall. So, maybe in December sometime. On Wednesday, I have a CT scan and we'll see if there's any cancer lurking in my bones. I don't think so . . .

Let's all celebrate and have a good time! Celebration!!

Well Crap - Again

I think I have mentioned that the red rash is still there. I've been on the drug combination - Xeloda and Tykerb - for about two months now and it hasn't resolved. It may have stopped growing, but it hasn't really started to shrink. So, Dr. Kenyon today thought that we should go to radiation and get rid of the f*#&#n' cancer cells in that area for once and for all. I will meet with the radiation oncologist again next Tuesday.

What this means is that I might lose the tissue expander. And, it might cause the skin over the implant to slough off and I'd end up with an even bigger open wound. Crap.

Sigh. The ongoing saga . . .

Visit with My Oncologist

Yesterday afternoon, I had an appointment with my oncologist, who wants to check in with me while I'm on Xeloda and Tykerb. I had several questions for him, which were, in no particular order: 1) adjusting my dose while on Xeloda; 2) what to do with the skin mets; 3) using melatonin for sleep; 4) his thinking about radiation; and 5) insurance approval for Xeloda and Tykerb.

Regarding Xeloda, he gave me permission to adjust my dose of Xeloda. His preference was for me to take it Mon to Fri and then off on the week-end (something about biochemical processes), but I told him that I am really enjoying my week off of it. So, for now he was happy with me trying to take only 5 Xeloda each day while I'm on it, instead of 6. He was fine with me skipping the last dose because of the mouth inflammation. He also mentioned something interesting: apparently, women in Europe are able to tolerate 8 or 10 Xeloda each day, while in the U.S., women seem to only tolerate 6 each day. Researchers aren't sure why, but are looking at environmental factors, such as our diet, or maybe what's in our water or environmental contaminants.

Regarding the skin mets, there were 2 or 3 small areas (i.e., a few mm long) that started to bleed a bit. They were around areas that were pretty dry, so he said to use a small bit of aloe vera gel to moisten it up. By moistening it up, we can keep them from getting larger. He definitely saw improvement - he last saw me on Feb 22, so he saw the improvement over a 12-day period on these meds. So, my eyes weren't deceiving me!!!

He didn't know much about melatonin so I mentioned to him the studies I found related to it. I posted about it last Friday. The thing I forgot to mention is that there are some studies, I think so far just done on rats, that show that melatonin stops breast cancer tumor growth. He wasn't able to suggest a dose. I started with 2mg a night (about 6 or 7 times more than is usually used physiologically) and it didn't seem to help. I went up to 4mg on Tues night and I couldn't even get to sleep! I went back to 2mg last night and slept for 4 hours straight! Yippee. I think I got up to another 3 hours the rest of the night, but I woke up a couple of times and stayed awake. I found some articles on the internet that show that one can take as many as 75mg/night without ill effects, other than feeling sleepy and drowsy. Another article said that elder insomniacs had better sleep with about 0.3mg. One site suggested 40-50mg/day if you are a cancer patient. So, I will monkey around with the dose and see what works. Liz, over at www.lizkreger.com, told me that she uses 5mg/night and that works for her. My oncologist's nurse said that a 3mg dose works for her.

Regarding radiation, my oncologist thought that my reasoning was sound in terms of putting off radiation until I really need it. He said that if the meds seem to be working on the skin rash and the skin mets, then radiation (a one-shot, local deal) wouldn't be necessary. We also assume that if it's working on the skin, then it must be working throughout my body. Yippee! again! If we continue to see improvement, then once it's cleared up, I can go back to getting "pumped up"! Cool. It's kinda weird being half-filled.

He also said that insurance approved the Xeloda and Tykerb, without any extra say-so on his part. My thinking? That giving me Tykerb/Xeloda is cheaper than having it administered via IV, because not only do you have to pay for the meds, but also for the trained personnel giving the meds. Taking pills works for me! Better than having a port or having my arm/hand stuck with needles every so often!

So, yep, it was a good visit. I took my folks out to dinner to celebrate!

Tears, Fears, and Radiation

Okay, okay, that was a bad replacement for "Planes, Trains, and Automobiles", but you've got to give me brownie points for trying!

The other day, I noticed that some friends of mine seemed to want to avoid talking to me about the news that the surgeons didn't get all the cancer. Of course, I can't read their minds, but I can only guess that they weren't sure what to say or what to do to help me and just maybe, maybe, they didn't want to see me burst into tears. I am still pretty emotional but as my boyfriend, my counselor, and several of my colleagues have reminded me: it's okay to cry and if you're uncomfortable with it, then that's your problem and not mine. It's better for me, healthwise, to let it all out. So, be warned . . . I am trying to gain my equilibrium and there are times when I don't cry. But I still do sometimes and it's okay. I'm really doing okay, the tears just need to come out sometime, okay?

I also want everyone to know that I want to talk about the whole thing - treatment options, how I'm feeling, etc. Please, please don't feel like you have to walk on eggshells around me. If I break into tears, it's only for a moment and then I'm able to talk about what's going on pretty calmly and logically. It takes more energy for me to introduce the topic, so I really really appreciate it if you ask me questions. I welcome them and I want to talk about it. So, in terms of what to say, ask me how I'm doing and what's going to happen next and also tell me a good joke! I do need to laugh. In terms of what to do: hugs are appreciated. I'm still able to function with all the daily mundane things to do (that is, except for cook my own dinner!); if and when I can't, I will ask you for help. Regarding dinner - at least two or three nights a week, my son is with his dad, so meeting somewhere for dinner is always a good something to do.

I mentioned Jeanne Sather's blog, entitled "The Assertive Cancer Patient". Again, the address is:

http://www.assertivepatient.com/

I bring up her blog because there have been several times that Jeanne has stated that she's learned to stay away from certain people for her own mental health. The two categories I remember that she mentions are: 1) those who are afraid she's going to die; and 2) those who are still dealing with their own fears of cancer. As you can imagine, those who fall into either of these categories have the net effect of 1) depressing the cancer patient, which then 2) takes away any positive energy that patient may have. I want to add a third category, 3) for those of us who are older siblings or are the take-charge type, people who bring to us their own fears of death and/or cancer make us want to take care of you rather than allow you to take care of us. We need you to take care of us. As my counselor mentioned earlier today, if you come to me in tears because of your own fears of death or cancer, take your tears to your own support system, and then approach me positively and with strength. I don't have energy for you otherwise and I might just learn to ask you to go somewhere else.

Okay, now on to the radiation. I just spoke with the radiation oncologist. The plan right now is to go on Xeloda and Tykerb (if insurance allows) and in about a month, we'll assess how effective they are. If they've proven to shrink the red "sheet" of cancer, then we start radiation. I'll have radiation for 6 1/2 weeks. In the meantime, I stop the tissue expansion as it's easier to radiate with less expansion. A month or so after radiation stops, then we can go back to expanding my tissue. That's about 3 to 3 1/2 months from now. I think I have at least two more expansions to get to a "B" cup. Then, it's a few weeks after that to get the permanent implants. So, I'm at least five months away from getting the permanent implants. When you see me during that time period, I will still be relatively small and lopsided! Just so you're warned . . .

Again, TO HELL WITH CANCER! And, thank you to all my colleagues who were gracious enough today to chat with me in the hall or in my office and ask me questions and give me hugs and allow me to cry in front of them. It's really wonderful to have such supportive colleagues! Love to you all.

Life (I refuse to write DEATH) and Taxes

So, I chatted with my doctor's office today. Tomorrow, after Dr. Kenyon signs the prescription form, his assistant Katie will FAX it to a pharmacy in Portland; this pharmacy stocks the chemo drugs Xeloda and Tykerb and they also know how to deal with insurance. They will notify me about the copay or whether or not insurance will cover them; if insurance doesn't cover them, then Dr. Kenyon will have a little chat. If insurance does cover them, they will send them to me within 24 hours, so odds are, I will be able to start the drugs by later this week.

In the meantime, I outlined the red area in marker yesterday and it seems like it has stayed the same. Also, I had another tissue expansion appointment today and I seem to have a bit more pain, like everything is much tighter than the past couple of times. So far, the doctor has expanded me about 350 cc's; to get to a "B" cup, I need 450 cc's. We'll see how much more I can tolerate because I think I read they want to expand you more than you need because things kinda settle in after awhile.

Katie also scheduled a bone scan and a CT scan for me. I get the injection for the bone scan at 8am on Thurs, then I see the cardiologist at 10am, and then the bone scan is at 11am. Then, the CT scan is at 9am on Friday. I have lunch with the chair of my department on Friday and the topic of the conversation is to plan my teaching and administrative responsibilities next fall around any future treatments I may have. So, hopefully, I will know whether or not the cancer has spread anywhere else by early next week, if not sooner. Thankfully, Kenyon usually tells me as soon as he knows the results of these tests.

And, for work, I need to finish a proposal for funding the last bit of my big King Island project; I need to fill out bureaucratic BS paperwork for one of the courses I teach; and I would really like to finish my taxes, that is, if I can even get them started. I downloaded the software today and then I tried to install it, but something didn't work; then I was on hold for 25 minutes waiting on customer support, a young guy finally answered and I started to tell him the issue, and then he promptly hung up on me. I guess I'll try again tomorrow . . .

Pity Party's Over - I Hope!

Hi all,
Just wanted you to know that I'm feeling better today, although when I woke up this morning, I wasn't so sure. I still have the sore throat, but it seems to be better. (I said that before, though, so I'm not holding my breath!)

I had an expansion appointment this morning and so far, I don't feel as sore as I did last week. Progress is always good! I told my doctor today that the left side was feeling softer, more like a water bed! He he.

He also released me to go back to normal activities (which I more or less was doing, although cautiously) and, furthermore, he felt that playing volleyball was fine as long as I didn't go all out. Yay! Since my surgery, it seems that my team has forfeited more games than they've played for lack of players. I've been trying to recruit more players as I've lost five since last year - haven't been as successful as I'd hoped, so I'm glad I'll be able to play again - in fact, my first time on the court since surgery is tonight. We'll see how I do!

I also forgot to mention that I also have a MUGA scan scheduled for Wednesday - so I have an appointment scheduled for each day this week.

Workwise, this week, I'm hoping to 1) work on an article related to placename density on King Island; 2) begin throwing together a proposal or two to get more funding for the King Island project; and 3) work on a bibliography related to the Alaska Native Claims Settlement Act. We'll see how much I actually get accomplished!

Happy Monday,
Dee

Goodbye Christmas Tree and Next Steps

Hi all,
I spent all yesterday evening taking down the ornaments from my Christmas tree and putting away all of the rest of the Christmas decorations. It's kinda sad, but now the surfaces and walls have a cleaner, leaner look. It's fun to have all of that stuff out but it does create more clutter. (Or maybe that means I need to reduce the other clutter that's around!) But that also meant that the closet I keep all that stuff in needed to be reorganized. For some reason, post-Christmas becomes the time to straighten out that closet. The rest of the year, I grab stuff out of there and then throw it back in, with no regard to how it's organized. So, I also cleaned and reorganized that closet. But now I look around the house and realize that there's a couple of other spaces that have kinda suffered from neglect post-surgery - one room has all my breast cancer books and stuff on a table. My work file piles (I have about 5 or 6 piles of file folders and books related to different articles or research that I want to work on) have all gotten disorganized and I need to file away receipts and statements and then put all the new Christmas card pictures onto my bulletin board - I post pictures with kids on them. I also moved furniture around in my bedroom last spring, but never got around to rearranging the pictures on my walls; these pictures are all now off-kilter and not centered so I want to fix that. House work is never ending, huh?

I talked to my oncologist a few days ago and then with the Ambulatory Infusion department. I have my baseline MUGA scan on the heart on Jan 16 and then I start Herceptin on the 18th. We are assuming that the MUGA scan will be normal but because Adriamycin can cause heart damage, we're just making sure. This also gives us what my heart normally looks like so that hopefully, we can detect any damage that Herceptin can potentially cause down the road. I'm waiting for Ambulatory Infusion to get the orders from Dr. Kenyon on chemically inducing menopause for a few months, so that's not scheduled yet. In the meantime, I meet with Linda Gelbrecht at Heartspring Wellness Center on Monday in order to start working on meditation and other visualization techniques. In particular, I want to do visualization about the Herceptin and begin thinking of it as a cleansing substance so I don't approach these injections with anxiety or fear. I want to do this to hopefully reduce any side effects I might have. I'm also meeting with Brodie Welch on Jan 17 - Brodie practices traditional Chinese medicine and I think I read that she specializes in women's medical issues. This might mean that I get acupuncture, too, or maybe take some Chinese medicinal herbs to help me through the treatments.

My son starts school on Monday and I have my next "pump up" session on Monday morning. A woman at the support group a few weeks ago called her tissue expanders "breasts of steel" because the tissue and the expanders were so taut and hard. I know what she meant! I've got these little boobs growing now, but they are kinda hard to the touch! I think that means that even as they get bigger, I may still not need a bra because they won't be saggy! Also, my little lumps are lopsided - the left side is definitely bigger than the right and that's because of the prior radiation to the right side which has decreased that tissue's elasticity. My plastic surgeon said not to worry - in the end, he'll make sure everything matches. So, don't be surprised if you see me if one side seems bigger because it is!

Take care, everyone, and have a good week-end!
Dee

Pump Up the Jam & A Second Opinion

Hello everyone,
On Monday, I had my first expansion appointment. It was interesting - Dr. Havard first injected some lidocaine and then injected 50 cc's of saline into the temporary tissue expanders. For those of you who don't know, these "tissue expanders" were placed under my pec muscles, but high on my chest, maybe only a couple of inches below my collar bone. They were not placed in the normal area for breasts because that area is still healing after the mastectomy and they didn't want the scar tissue to adhere to these tissue expanders. Then, when it's time to insert the permanent implants, they will "release the muscle" and the new implants will be in the normal place. I also found out that it takes about 450 cc's to get up to a "B" cup - that's nine injections! And, because Havard has a couple of vacations planned in December and January, that means that my expansion appointments will go into at least March. By then, the nurse said that it'll probably look like I have a chin rest!

I had my appointment with Dr. Luoh at OHSU yesterday. And, ironically, while he still really stressed that I should have chemo, what he had to say made me even more sure of my decision NOT to do chemo. First, he feels that this cancer is actually a new cancer and this is a good thing - apparently, the prognosis for "new" cancer is better than a recurrence of an old one. He said that if it was a recurrence, there's a greater chance for a "distant relapse" or metastasis to another part of my body. The chance is less for a new cancer. I also asked him what he thought my chance for a distant relapse was. He estimated 50% (whereas Kenyon thought it was 80%). Herceptin cuts that down to about 25%, ovary removal plus aromatase inhibitors puts it down to about 15% and chemo only gives me about another 5-7%. One of my colleagues, Melissa Cheyney, pointed out that a normal woman on the street has a 12.5% chance of developing breast cancer in her lifetime. Which basically means that by doing Herceptin and the ovary removal/aromatase inhibitors, I'm near the "normal" category, without chemo! So, in terms of quality of life, both short- and long-term, I will refuse chemo. The risks outweigh the benefits. Dr. Luoh kept stressing that he felt it was an early stage breast cancer and he usually wants to treat such cancers very aggressively, and especially since I'm young and relatively healthy, he thought I could handle the side effects. But having gone through those side effects before (while the nausea won't be as bad, I would suffer from new side effects like neuropathy - I'd lose some feeling in my fingers, hands, and feet), I have no desire to repeat them. And, as I said before, I think I am still dealing with fatigue from the first time around - why would I want to add to it?

Well, I'm going to sign off. I had a busy day yesterday - not only was I in Portland all day, but yesterday evening, my department chair hosted a celebratory dinner for one of my colleagues, which was fun, but I didn't get home 'til almost 10pm, which is about an hour later than I usually get to bed! I'm tired - yawning as I type! Take care and thank you again to everyone who brought meals!
Love,
Dee

A day of running around

Hello everyone,
So, today was a day when I seemed to be talking and thinking about my upcoming surgery all day. I met with my plastic surgeon, Dr. Havard. We talked about what to expect with this upcoming surgery and reconstruction and he answered some lingering questions I had. Scott wanted me to ask whether or not my coughing would hurt the stitches and while I should be careful, coughing usually originates from your abdomen. We also, I think, made sure that the left nipple was not taken so that it could be used in reconstruction later. He also said that he would be injecting 50 cc's of saline into the temporary implants (aka "tissue expanders") once a week for probably a couple of months and that most people usually tolerate that fairly well. We will have to see how the radiated right side responds and whether or not there's too much scar tissue. Then, he measured me so that he can get the right tissue expander in there. Then, I was sent to the hospital to go through the preregistration process and then I met with a nurse (Gail) from Short Stay to do a pre-interview - making sure all my reports were there, how I reacted to anesthesia and other meds in the past, etc. and then she drew my blood as they needed recent blood work.

At that point, it was lunchtime, so I ate lunch there in the cafeteria and ran into a nurse, Jennifer, who administered one of my chemo treatments five years ago. My sister ran into her at work a couple of weeks ago and Jennifer just wanted to tell me that she was thinking of me and hoped I was doing okay. Of all the times I had a needle stuck in me through both of these cancers, I have to admit that Jennifer was the absolute best - I never felt the needle at all. It was nice to run into her, especially since she remembers me.

Then, I chatted with my office manager, Karen Mills, who will be coordinating my dinner delivery schedule. If you are so inclined, contact her if you want to make dinner. I don't cook, so at the moment, since I'll be home-bound for a couple of weeks, dinners will be most appreciated.

After volunteering in Eddie's classroom, I met with Linda Gelbrecht at the Heartspring Wellness Center. I'd worked with her previously on visualization techniques. I caught her up on all that was going on in my life and then she helped me come up with a little routine I can use to help me decrease my anxiety and to maybe help my body bring in healing energy through surgery and my recovery. At the end of the session, I was pretty relaxed. Now the trick will be to remember to do that routine over the next few weeks. In other words, it was pretty useful since I have had a few little anxiety attacks the past few days.

Well, thanks for tuning in. A friend and colleague observed that this blog probably benefits me as well as all of you who are reading it and I have to admit that I do benefit from it. Not only does it save me time in that I can keep a lot of people updated, but it also helps me to unload some of my feelings as I go through this process. Anyway, I'll try not to get into it too much (I mean, I don't need to report what I had for lunch, now, do I?). I do appreciate you reading it, though! Hope you're all having a good day!
Dee