All Clear

What a relief! The PET/CT scan is clear, no sign of metastases. The visit to the surgeon resulted in once again syringing out fluid around the incision, but he also scheduled the port placement. It is to be installed (sounds like a new washer, doesn't it?) on April 1st. Chemo tentatively scheduled to begin on April 4th. In between these two visits is a trip to salon and cutting off most of my hair. Soon I'll be what a comedian once described as having less hair to comb and more face to wash. I.e., bald. I will find out what my bare head looks like, and I'll see how much it bothers me to be bald.

Below is a photo of my ice candle. It burned down very fast, and although I expected to get a hollow cube that I could insert a new taper inside to burn again, the shell proved to be far too fragile, all melted away in the center and nothing left to hold a new taper. I may try this with paraffin wax instead of soy, once I get some paraffin.



My kids (well, to me. They haven't been kids in 15 years or so) have surprised me, asking routine questions about the port placement, the incision, etc. I would not have been surprised if they had completely ignored the whole issue, other than hugging me more lightly. I have yet to take R aside and explain that all this has an impact on her, that she is at greater risk for breast cancer and that her doctor will probably suggest a mammogram sooner than at age 40. She tends to get prickly when you surprise her with new things, which is why I have put this off. But soon.

It is 3 am, time to return to bed for more (hopefully) sleep. I'll finish this later.

OK, photo in place -- looks sorta like a jack-o-lantern, doesn't it?

My therapist has forwarded to me a list of meetings that take place locally for cancer patients, family, and so forth. One of the contact names is of a social worker that helped take care of Mom when she was with hospice, back in 1998. She was very helpful and incredibly patient with Dad and my sister, no small task. So I will definitely check these meetings out, once I have a routine set for the chemotherapy. I was surprised anything was available locally, this is a very small city/large town and we lack a lot of the amenities found in big cities.

The chemo port is still on for Friday, I hope it will be painless and easy, I'm not feeling very brave these days. Knock me out, that's what I want.

Thanks once again for all the caring commentators that read this, it means more to me than I can say.

Bumper sticker for the day: "Never do anything you wouldn't want to explain to the paramedics."

Tired

I had a PET/CT scan yesterday, and am feeling the result in the left side of my chest quite a bit. I see the surgeon tomorrow and I expect he will not be thrilled to hear I put my left arm above my head for the 30 minute scan, resulting in pain and swelling. This means it is not completely healed, here 4 weeks after surgery to remove that breast. I'm too tired to really work up any anxiety. I won't hear the results of the scan, which looks for metastases, for several days.

The ice candle I mentioned is made by putting a (store bought) taper down the center of a cardboard form (like a milk carton) and then packing the container with broken ice cubes. Then you pour molten wax over the ice, and as it melts/cools you end up with voids in the candle. Peel away the cardboard, dump out the melted ice, and you have a candle like swiss cheese, but thanks to the taper can still be burned. The book pictures look neat. Maybe later today.

The rain yesterday was awful, the thunder and lightning nearly continuous for 30 minutes at a time, with squall following squall for hours. I was glad the horses and dogs were in the barn, warm and dry. As it was, the cats were flinging themselves under beds and whatnot the entire time. They would venture out when things let up, only to dash back under, body low and tail between their legs, when the thunder started again. Other than providing dark places to hide, there wasn't much we could do to help them. One cat was very brave, and commandeered all the best window seats, completely unfazed by the commotion. Luckily we never lost power, and all the wind did no damage.





I am still thinking about having all my hair cut very short, before the chemo makes it all fall out. It would save finding all the hair spread on my pillow or going down the drain, and make it look less patchy as it comes out. I don't want to go to my regular hairdresser, as I don't want a total tear-fest. I am thinking I will cancel my appt with her on the first, leave a message about why, and just go to the shop at the mall, where no one knows me. Chicken way out, isn't it? I am not comfortable telling anyone, and make N do it for the family, our good friends, etc. My emotional control is suffering too much to handle the reaction from anyone, first person. All the messages here have been so encouraging, it positively makes my day to read all the kind thoughts being left by all of you.

I sell used books on Abebooks.com and have had quite a few orders the last few weeks. The only problem is that when Windows crashed on this computer and had to be re-installed, it wiped all my files, including the inventory for Abebooks. The uploaded one on the server at Abebooks can be downloaded back to me, but it won't include the location as that is not stored on the server. So finding a book is pretty time consuming, they are listed under book number but not which box they are in. Teach me to do backups more often than (for example) last August, (wince). It does feel good to find new homes for all these old scifi and mystery books, even though I make very little money on them; I don't even clear the original price of them, after the packaging and postage and whatnot. Still it beats pitching them (there are thousands) or donating them to the library or a used book store, where they will (probably) pitch them also. Hate to see that. One of the recent ones was a $2.50 book with $9 shipping to go to the UK, guess it's a hard to find title. I never order anything online where the shipping is more than the item cost; I just add things to the order to bring the shipping back to reasonable. Retail therapy for me, when I don't have the energy to go out to the mall. And I love getting things in the mail, a little like Christmas, when I order most of the gifts online.

Onward and upward, no appointments today, so I can lounge around all day. I bet I look back on these days with nostalgia once the chemo starts.

Bumper sticker for the day: "Whisper my favorite words : "I'll buy it for you" "

Pending

Just a quick update: I saw the oncologist and got (confusing) information about the Time of the Chemotherapy. In all, I will take chemo (herceptin, for those interested) for one year; but in the beginning I will take two other drugs that will make my hair fall out and maybe my fingernails fall off, my mouth to blister, and a whole host of other side effects. I'm at the point where if I could call it all off I would. But I feel like a cog in a wheel, borne along on a path I can't see. Somehow I thought there would be more empathy from my surgeon/oncologist, and certainly more encouragement, but I can't decide if they feel this is so routine for them, or if they are pessimistic about my chances. N asked the onc. about prognosis and he hemmed and hawed and told us about a patient who lived 10 years after chemo. Ten!! I intend to live into my 80s if not more (I'm 60 now). Ten years out is nothing. Maybe they just don't want to get my hopes up. I have a PET/CT scan on Monday the 21st, to look for "mets" (i.e., metastases) which I am sure they will not find because my tumor was found at such a small size; 1/4 inch. I have an echo-cardiogram to get a baseline of my heart function since one of the drugs can cause heart failure. Gulp. I've had an echo before, it's OK.

Moving right along, the earthquake/tsunami in Japan is so horrific in the telling, I can't fathom what it must be like to experience it. And I totally get that many of them won't enter a buiding should there be another quake. We lived for a several years in San Francisco and felt a few minor quakes. At each one, we would stand still and think, are we done? Or is this the big one? It wasn't, but the mini quakes were always a reminder that we lived right on a fault line. When we were in the process of moving here, there was a whole series of mini quakes, and all we could think of was that tiny baby still in the ICU downtown, how vulnerable she was, so tiny. We couldn't get out any too soon for me. But in Japan there is no place to go that hasn't been affected, and now the nuclear reactors blowing up. I don't think the Japanese are being up front with the dire-ness of the problem, I guess it's that Oriental saving face and not wanting outside help that hampers them. I send good thoughts to all of them.

I have been so tired, I haven't done any candles in a while, but there are some I want to try, and hopefully this tired feeling will go away once I have assimilated all the stress of my situation. I want to try an ice candle next, see how that does. I see the surgeon today to get the last staples out, and schedule having an IV port placed in my chest for the chemo. Maybe I'll feel awake enough to do the candle afterwards. If so, a picture here I will place. There is no try, only do, or not do (Yoda wisdom). When we are waiting and waiting so much, we can bring along C's portable DVD player for distraction. I know we have several unseen movies somewhere in this house!

Thank all of you for the lovely comments, it really does help me when I read each one. I just hope I don't become TOTALLY obsessed with this cancer thing, how boring that would be. I will call my BGFF in Florida once I know more and vent to her, poor woman! I wish I could fly down there, but I am tied here for now, and she is going through some tough times now herself. It's so unfair (as if anything in life is fair.)

Bumper Sticker of the day: "Global warming: Live long and perspire."

No news

The only thing new on the breast cancer t-shirt I bought, see here:






That suits me a lot better than ones that say: hope strength faith or whatever the flavor of the month is.

I got the infected laptop back, with a $150 ransom. I know it is worth that, but damn I wish I had thought of starting it up in safemode to delete the bogus file. I reassure myself that it wouldn't have worked anyway. Right?

I went to see the Phys. Asst. on Monday and got the scoop on the local oncology docs. Basically there are two main ways to go: either through the WVU Cancer Center or to the two oncologists in private practice. I'm sure I would do OK in the Cancer Center at the university medical center, but my experience in working at the center is that people sometimes get lost in the shuffle. All new residents in July,
Faculty who take vacation (or just lots or trips), etc. etc. And the WVU hospital is different, because they tend to get clients from a very broad area in the state, and there is a colorful name for the more rural of them, which I won't write here.

As an aside, why is it socially unacceptable to use derogatory terms for African Americans, but still OK to call people in the Appalachian mountains "hillbilly" or "redneck" or "gritley"? When my daughter was in early elementary school -- Catholic school, she was teased about where we live, which is well outside of town -- horses, you know -- called gritley etc. I told her to ask the mouthy girl where she was born, and when she tells you somewhere in the region, or even in far-away Pittsburgh, then tell her you were born in San Francisco, and then see who is gritley and who is not. I thought she could also mention that her parents are both college graduates (a very high percentage of WV kids do not finish high school, much less college) but didn't want her to rub it in. But I got to thinking, why is it OK to do this? Any teacher overhearing this would never blink an eye, but to me it's part of making a child into a thing, and it is OK to browbeat and bully, at least until things reach an incendiary level. Just my two cents worth.

Anyway, using the university also means you will have student docs, nurses,therapists, etc, every time there are rounds, and other times too. I also feel like I'm in a fishbowl. So I'll pass, at least for now.

N finally sold his purple VW bug, his "retirement project". It has been sitting under the old barn roof and covered, so it didn't look too scratchy. It hasn't moved in 5? years, but buyer pumped up the tires put it on tow bars and hauled away to Clarksburg, a 50 mile trip on the interstate. Hope they made it. And man, I'm glad it is gone, it sat there reproaching us for the money we spent to have an undrivable car. So lets don't think of that anymore.


I've held on to this post waiting for the photo at the top, but meanwhile this computer suffered a complete meltdown and I had to restore Windows, wiping all the files on the hard drive. It is now up and running, but has nearly nothing on it. The wiped files included 4 years of income tax records, including 2010 which had not yet been filed. Major headache.

bumper sticker: "I'm marching to a different accordion"

Coping

I didn't get the drain out (it is still in, at 8 days post-surgery) but it hardly matters. When I saw the surgeon he had "unexpected" results to tell me. I have another "infiltrating tumor" in addition to the DCIS before, and he did take 5 lymph nodes (explaining why my incision reached all the way under my pit) and that of the 5 nodes, one has tumor cells also. He told me I need an oncologist "for the next phase" I think his words were. I forgot to ask stage and size, I was still processing an invasive tumor. I go to the surgeon today for the drain and sutures out, I hope to learn more. I have found an oncologist that everyone seems to favor, two partners actually. Will call for an appointment after the stitches are out.

From what I have read, the next step is to get a body scan (MRI or PET, I think) to look for another tumor elsewhere, and then (if found) chemo and/or radiation. The radiation is ironic; I wore a film badge most of my working life as I handled radioisotopes used for biomedical research, and I made certain they were always, with a few exceptions, background.

I hope that nothing else is found, and that removing the breast and the positive node is all that is necessary. Maybe just monitoring. They did take blood for a tumor marker measurement (CA 25-27 I think; why can't I remember to write these things down?!!) I thought at this point I would be looking into mastectomy bras and prostheses, not contemplating chemo/radiation. Life sure has some ups and downs...

I want to thank all of you who have commented, most coming in from a post on "Iwasntbloggedtesterday" it has been both unexpected and thoughtful, to get such support in this crazy time. Retiring in 2006 left an ever-diminishing group of friends, one of those things you don't think about until it happens, though I treasure the support from the ones that remain. It is *awkward* to call someone for lunch and then say "Oh, by the way, I have cancer." Kind of a conversation stopper, don't you think?

Well, if my hair falls out that will save a lot of explaining, I guess. I wonder what my bald head would look like?

I'm coping, one day at a time.

Bumper sticker of the day: " Buckle up! It makes it harder for the aliens to suck you out of your car."