I'm in a holding pattern...



...which the picture above has absolutely nothing to do with, but I thought I'd include it anyway. Since my last post, I did indeed have a biopsy done on the lump I had, and the results came back as inconclusive. Which means I know nothing more than I did last month, except that a mastectomy is a painful excuse for breast reduction, and you can still get lumps that could still be cancer. Not quite the learning experience I had hoped for, but you can't always choose them.

Since the results were inconclusive, I now have to have surgery in March to remove the lump, and replace the temporary expanders with permanent implants. Hopefully the lump will be nothing, and I will wake up with a fabulous new rack, and not a lopsided body and a sense of impending doom. I am not as nervous about this little lump as I was before, because although the results were inconclusive, the small sample did not show any "obviously malignant cells," which is a good sign. The doctors will not do surgery until then because of the risk of infection (due to low blood counts), and to space out my doses of anesthesia. So I will wait. I will not be patient or pleasant about it, but I will wait.

One thing I have to look forward to while I am waiting is attending a conference in Dallas, Texas later this month for young women with breast cancer. Many of my online, cancer message board friends are going too, and that's the part I'm looking forward to most. Apparently one of the nights we are there, we are going to a bar with a mechanical bull. Since I can't even ride a bike very well, I am thinking that riding a bull would not be a good choice. But I haven't entirely decided against it either. It may be one of the few chances I have to ride a mechanical bull, and I would hate to get to the end of my life and think "Damn, I really should have gotten on the bull when I had the chance!" Most likely I will have plenty of other regrets to keep me occupied, but still...maybe I should do it! It would probably make for a good story later, especially when I need to explain the broken bones and bruises. Even if I decide not to do it, I am totally going to watch the others; I can't wait to see the looks on the barroom patrons' faces when wigs and prosthetic breasts start flying! Yes, indeed, that alone is worth going to Dallas for!

Just call me Lumpy Lesley....

My friend Rachael told me I needed to update my blog, with more details about my current situation than I have posted on facebook. So basically, I'm just going to cut and paste most of what I wrote on the message board I hang out on with other young women with breast cancer. Aside from the cancer part, its actually a very fun place to be. Most of the women there are people I think I'd really like in real life if I ever got to meet them. And actually, at the end of February, when I go to a conference in Dallas for young women with breast cancer (that I got a scholarship to), I will be able to meet many of them. I am looking forward to that, and the warmer weather!

In the meantime, though, I will just copy my post: I had a followup appt. with my oncologist on the fourteenth of January, and I very unwisely did not premedicate with ativan, even though I knew I was going to ask her about the tiniest little bump I have above right above my expander line. (The expanders were put in place during my mastectomy, right below the pectoral muscle and stretch out the muscle and skin slowly so permanent implants can be put in later). She felt it, too, and sent me off to see my breast surgeon, which of course alarmed me a little, since I know how overbooked she always is. But they wanted to see me today, not later. So I waited, and waited, and got more stressed by the minute, which spread to three hours. While she couldn't really feel the lump herself, she knew that since both I and the oncologist could feel it, something was there. She sent me for an ultrasound, which was a much shorter wait, but they seemed kind of puzzled by my lump.

They meaning my surgeon and the radiologist; the tech gave no opinion. It resembles a tumor in some ways, and a thrombosed vein in others, but does not seem to have any blood supply to it, which sort of precludes both. It is tiny but it goes deeper than they would have thought and kind of looks like a worm. The radiologist didn't think it looked like fatty necrosis, either, and its not a place scar tissue would be. Several women suggested an undissolved suture, but the plastic surgeon ruled that out. He didn't suture internally, and he also seemed puzzled by it. The problem is that since it is so close to the now completely filled expander, there is a good chance that going in with a needle to aspirate it or trying to remove it will rupture the expander. Another possibility that was suggested was waiting eight weeks, which is the earliest they can do surgery to exchange the expanders for implants, and take it out then, and analyze it on the spot. I was actually planning on holding off on that surgery until the summer, just because I'm sick of procedures, but now with this little lump, that wouldn't make sense. But even waiting eight weeks is not an option in my book.

Aside from the fact that I will have a nervous breakdown long before that, I don't like the idea of going into a surgery not knowing what the oucome will be (one breast or two?). And I really don't like the idea that whatever it is could grow during those eight weeks. And since I don't sleep much at night now, I know that if they don't get it out soon, I will go in myself with an exacto knife some night, and bring it to them in a tupperware container the next morning. And I'm really quite certain that would rupture the expander, and make a big mess as well.

And if the lump is cancer again, I'll need radiation to the area and they won't do that with an implant anyway (and I'll be looking at living with some kind of chemo regimen for the forseeable future). At this point I don't care if they rupture the expander. I want whatever it is out. Now.
So I was very happy when my surgeon called back to say that the head of radiology is going to do the procedure with a stereoscopically guided needle on Wednesday the 21st. She reminded me again about the risk of rupturing it, but also felt it was the best option. She also reassured me that she did not think it was a tumor due to the lack of blood supply, but that since nobody knew what it was, it didn't make sense to leave it there. I agree.

So, since I don't drink, between now and Wednesday I will be getting by on keeping busy with Kelsey and taking lots of ativan. I'm beginning to feel more positive that it will turn out to be nothing, but I can't say I'm not worried at all. I am just really ready to move on from this and the constant fear of recurrence. I am also really ready to grow some hair. And have a cute and perky set of fake boobs (foobs, as we call them on our message board.) I don't think that's too much to ask. But I also want world peace and a reversal of global climate changes, so maybe I'm aiming too high right now. I'll be willing to settle for bald and flat chested if I can be cancer free. I really hope that's not too much to ask for.

Santa went overboard....

and so did Kelsey's family! We had a great first Christmas together, and Kelsey made out like a bandit! In addition to the Wii she really wanted (and the Wii Fit that an older, fatter, member of her family needed), she got heelies, bean bag chairs for her play room, and countless games and other toys. And although Kelsey knew she wouldn't be allowed to have an Ipod until she was a little older, her Aunt Lee decided to ignore that "rule" and give her one anyway! And let me tell you, there is nothing like hearing an eight year old sing Hannah Montana songs for hours on end at the top of her lungs (with headphones on, so you can't hear the music) to make you want to rupture your own eardrums just to end the misery. After going out to buy your brother in law drums. Really big, loud drums.

I thought Kelsey was too young for an Ipod, and would wind up losing it; now I realize I can only hope that's the case!

The days before Christmas presented their own fun challenges. Here's something you may not have known: In order for a child to have her picture taken with Santa, a parent needs to not only remember this fun tradition, but then has to bring the child to the mall. The day before Christmas. I can assure you this parent is not smoking crack, in case you had any question. And if that parent has just had a double mastectomy 4 weeks ago, she should really just pay somebody to dig her car out instead of trying to shovel it out herself, especially if she is out of percoset. Because that shoveling will take an incredibly long time, be rather uncomfortable to do, and not add to one's Christmas spirit. There were no neighbors in sight, so playing the cancer card was not even an option. That parent is still sore!

In the other helpful advice category, people who wear wigs should not open oven doors to take out dinner. Because wigs melt. And melting wigs are not only ugly, matted messes that resemble dead animals, they also smell bad. And while eight year olds find this funny enough to fall down laughing about, semibald adults with melted wigs tend to be less amused. Especially when the wig melts two days before Christmas. Thank goodness for back-up wigs! I believe this might be a sign that people with wigs should not cook, period, in order to avoid future mishaps. But apparently when people with wigs have children, they do still have to make dinner. Which seems unfair. And yes, I am still bitter that I had to shave my legs during chemo. But at least I didn't melt the wig then, because that would have put me over the edge!

In the end, both Kelsey and I had a very nice Christmas.

I was saddened today, though, to read on my young survivors message board that one of our dear members had passed away on Christmas Eve. I am glad that she is no longer suffering, but I also find that to be little consolation. Thirty three members on the board have died this year.

Overall survival rates for women with breast cancer have improved greatly in the past twenty years. Except for premenopausal women. More of us are getting cancer, and more of us are dying.

Janet, you won't be forgotten.

"Its been a long December, and there's reason to believe that maybe this year will be better than the last..."

Do you remember that song? Its by the Counting Crows. I liked it when it first came out, and I like it even better now. Because really, December hasn't been so long, but 2008 sure has!

There were good moments, to be sure:

Both Kelsey and Jack joined our family, and my friend Melissa found out she was expecting perhaps the second least expected (but very much wanted ) baby on the planet! Some coworkers/friends also delivered healthy babies, and that is always reason to celebrate.

But there were some dark days as well. In addition to my own cancer diagnosis, my mom's cousin lost her battle with ovarian cancer. My friend Rachaels' dad died quite unexpectedly, and my cousin Beth's teenage daughter died unexpectedly as well.

I have become very close with several women on the Young Survival Coalition message boards (an organization to support young women with breast cancer), and we were hit hard by many deaths over there this season. So many young lives were lost. These deaths hits me so hard, in fact, I needed to take a break from the grim realities to remind myself about all that is good in my own life.

And overall, things are good.

I am recovering well from a double mastectomy with reconstruction and virtually no complications aside from pain.

As far as we know I am cancer free for the time being.

I have a spunky, fun loving eight year old who I adore and who is adored by my entire family; she has brought more joyand laughter to our home than I would have thought was possible.

I have a month old nephew who is healthy and cute, and has very strong lungs!

I have friends and neighbors who have have given so completely of themselves, I don't think I could ever repay them.

And through it all, above all else, I have a family that has loved me and done more for me than I could ever have hoped for or possibly imagined.

***

But I am glad to see 2008 come to an end, and turn a new page. Now that my fight with cancer seems to have come to a close (we pray), I am finding the return to "normal" life much harder than I imgained. I thought when I was done with treatments and surgeries and medications and weekly doctors visits (just a few more of those), I would be ready to celebrate! Instead, I'm feeling a little frightened and lost. I have done all that I can do to beat this disease, but I feel worn and weary from the battle, with no way of knowing if what was done is enough.

It makes me feel better to realize that these feelings are normal. I approached this new challenge as I approach every new venture in life, by taking a trip to the bookstore, and doing some research. And lo and behold, I found out that emotionally, the six months to a year after being treated for cancer are often signficantly harder emotionally than the time during treatment. And while that may not seem like good news to most people, it most definitely is to me. Because I have been struggling mightily in recent weeks; I am often in tears for no reason at all, and I am completely unable to get out of my own way. I know what I'm dealing with is depression of some sort, but I couldn't understand why.

I just "got over" cancer; shouldn't I be thrilled?

Apparently not. Apparently the most normal thing in all world to feel after dealing with a life threatening illness is not overwhelming joy at your new lease on life, but instead a sense of despair and grief. So, for at least once in my life, I am "completely normal!"

It makes no sense, I'm sure, to those who have not walked in my shoes, but it gives me a tremendous sense of relief to know that this is "normal." It gives me hope that the days ahead, which still feel so scary, are going to get better. It makes me feel better to know that I am not the only one in tears each day at 3:30 or 4:00, gripped by an unknown and un-named fear that has cancer written all over it, but isn't quite cancer itself. And it defnitely makes me feelready for the days to come, when I will wake up and the first thing that will crosses my mind will not be related to my own mortality. That is something to look forward to!

I am glad 2008 is almost over. I hope 2009 brings more joy, love and laughter.
And chocolate.
Chocolate will make whatever it brings that much better!

Its been a While...

since I last updated, and I have lots of things going on. Some good, some - not so much. The good news is that my brother and his wife, Melissa, welcomed their first little bundle of joy into the world on October 27, 2008. His name is Jack, and he is as cute as can be (like me, but he has more hair!). Kelsey is quite smitten with him, but remains true to Gerard, her knight in shining armor.

I am planning to go into the hospital Thursday morning to have a double mastectomy with reconstruction, and I am both nervous and relieved about having it done. Frankly, I felt better about all of this before I got my latest MRI results. While the unaffected breast is still cancer-free, I have a new spot in the other one that is suspicious for a "second primary malignancy," which means another cancerous tumor. I won't know until after the surgery if that's the case, and I'm praying its not, but I'm not feeling particularly upbeat right now. If five months of chemo didn't wipe the cancer out of my body, I don't think that's a good sign. And if I have to do more chemo, I will do it, but I'm not going to be happy about it. I'm not going to put on a brave face, and be upbeat right now. I'm going to be pissed off. Really pissed off. And I thought you all should know.

Anyway, since I'm not capable of being too positive and upbeat right now, I'd like to ask you to do it for me. I need all the help I can get!

Back to School...

The new school year has started, and since I'm out on disability, I was able to walk Kelsey to her first day, and be with her when she met her new teacher. For me, this was very exciting. Kelsey was having too much fun, though, to even notice my presence! I guess that's a good thing; she is very friendly and not at all shy in new situations. The next day, however, when somebody asked me to point her out in her classroom, I said "See all these little girls sitting down waiting for the teacher? Now look; see the little girl standing and talking with that group of boys? That's her." I am curious to see what will be said at her first conference; it will be very interesting to be on the other side of the table for the first time!


The other reason I was able to walk with Kelsey on her first day of school (aside from not working) was that I had to miss my dose of chemotherapy this past week since my blood counts were too low, and I'm still very anemic. While it bums me out a little (and adds a week onto the end of my treatments), I was glad for the break. My body needed it. The week before I was given an iron infusion along with my taxol treatment, and I was told it would make me feel much better. It did not. I spent the next week in bed with horrible chills (in between hot flashes) and uncontrollable nausea. The oncologist on call recommended I go to the emergency room so I could be admitted, but since all they planned to do was give me IV fluids and observe me, I opted to stay home in my own bed instead. As miserable as I was, I knew I was not in danger, and since they weren't offering me any better medication if I were admitted, it seemed pointless to me. (I am all about the meds!) I am hoping that I won't be getting any more iron infusions. I would rather have another blood transfusion instead. Or poke out my own eyeballs. Either one would beat the iron infusion in my book!


I also went for a followup appointment with my surgeon last week and brought up the fact that I really wanted to have a preventative bilateral mastectomy to greatly reduce my risk for recurrence, and the chances of developing a tumor in the other breast. I have done lots of research and while the overall death rates are the same for someone treated with a lumpectomy and radiation (versus a mastectomy), the risk of recurrence is not. My oncologist thinks I am being "drastic", but I'm pretty sure that unless you've been in the chemo chair, you can't know what its like; I know the thought of doing this again makes me cry. I'm not sure I could. Additionally, radiation has its own risks, including an increased chance of developing a secondary cancer, and thats also a risk I don't want to take. The more I weighed my options, and the more I thought about how heavily the fear of recurrence weighed on me, the more sure I became that the mastectomy was the right choice for me.

When I met with the surgeon and she asked how I was, I blurted out that I wanted a bilateral mastectomy. She suggested we do the exam first, and then talk about why I wanted one, and what my options were. In the midst of that exam she found another lump, which she circled with her Sharpie, and told me I would need to have an ultrasound done. When she finished the exam and I told her my reasons for wanting the mastectomy, she agreed that it seemed like a good choice for me. I went right in for an ultrasound and was told the lump was fine. That one visit made me entirely sure I was making the right choice. Just sitting there for that short time, waiting for the ultrasound, and then waiting for results made me sure that this was not an experience I could have over and over again. I think I have dealt with things pretty well up until now, but I am tired of being sick. I want my life back. And I can't deal with feeling like a sitting duck. I realize the mastectomy is not a guarantee that I will continue my life cancer free, but it seems to give me the best chance.

This new plan means I will likely be out of work longer than I originally expected. I have five more sessions of chemotherapy, and then I will likely be given a few weeks to rebuild my blood counts before they can do surgery. The recovery from a bilateral mastectomy is around six to ten weeks, depending on the type of surgery they do. I am meeting with the plastic surgeon before my chemo session on Tuesday to get more information, and to hopefully plan the surgery.

I am not looking forward to the next few months of treatments and surgeries, but I am glad to have made a decision that gives me some peace of mind. And I'm especially glad I have a spunky seven year old who challenges me to keep going when I think I'm ready to give up. I thought before that the timing of her arrival was not so great, but really, she came at the absolute perfect time. She gives me hope for the days to come.

Lots of Changes...




I know I haven't posted for a while, but now that Kelsey has moved in, I find myself spending a lot less time on the computer these days. It has been a big adjustment for everyone, but overall things have gone well. If she could give me some of her endless energy, I think things would go even better! I debated posting more about our daily lives, but have decided that although I seem to have no boundaries in terms of what I write here, I do very much want to protect her right to privacy. So instead of boring you with details about what she says and does, I will limit myself to boring you with the details of my life instead!


On that note: I am still having a little trouble with meal planning - I either buy too much fresh food and throw tons of stuff out, or not enough and wind up back at the store again in two days. I don't think I'm spending any more money, though, since my days of constant takeout food have come to a screeching halt. Unfortunately, I have not managed to lose any weight. My mother keeps telling me not to worry - "its because of the steroids," but I haven't been on them for several weeks, so I think that excuse has worn thin. I guess its good that something in my life is thin; it sure isn't me!


I am now more than halfway through my chemotherapy treatments, and while I'm having some side effects with the weekly doses of Taxol (anemia, fatigue, bone pain and some numbness and tingling in my feet and hands), it continues to be so much better than the Adriamcyin/Cytoxan treatment I was doing before. The only thing that really stinks is the hot flashes I am having every night due to chemo-induced menopause. I hope they will end when I'm done with chemo, because I get about two hours of sleep a night, and spend the rest of the time changing pajamas and turning on and off the AC and ceiling fan. I am convinced we could solve the problem of high heating costs if somebody gathered all the menopausal women in America and harnessed the power of the hot flash, but I realize no man (or woman) in his right mind will ever volunteer for such a job. It would be a suicide mission, I'm sure. But if I could figure out the logistics of it, I would totally rent myself out for home heating purposes this winter. This could completely offset the fact that I will be without a paycheck come September (and I won't be returning to work until sometime in December, I think).


On a more uplifting note, today was the final day of the Boston Three Day 60 mile walk for the cure (for breast cancer), and I spent a few hours on Wollaston Beach this morning cheering on the walkers. I originally decided to go because someone I met in an online group for young women with breast cancer was walking alone, since her friend had bailed on her at the last minute. I figured it would be good to show some support, and I am so glad I went. I can't even imagine what an experience it must be to do this walk; I was simply in awe of the people I saw, young and old, who had just walked over fifty miles and were still going.


I sat with a group of supporters, mostly other women, and we talked all morning as we cheered on the walkers and passed out water and freeze pops. A group of three women were going to be walking in the Washington DC Three Day event in the fall, and were there just to cheer on the crowd. One of these women was a breast cancer survivor, and the two younger ones were her stepdaughter and niece. Two other women had driven from New Jersey to cheer on their sister, who had no idea they were going to be there. She cried when she them. Another women was there with her three children, who were handing out candy and spritzing the walkers with water all morning long. The feeling of camaraderie and connection, even among those of us on the sidelines, was incredible.


I'm not sure I will ever walk sixty miles over a three day period. Just driving sixty miles wears me out. And that was the case even before I had cancer. But I will say this: I left there this morning completely inspired and touched by the people I met. If you ever get really crazy and decide that you would like to walk sixty miles to support breast cancer research, let me know: I will absolutely sponsor you! And I will be there to cheer you on, too!