Thursday, October 29, 2015

Meeting with breast surgeon and last chemo!

Had a little fun with the last session. Plus, it's almost Halloween.
So much to report as I didn't feel like getting on the computer the last couple of days! I met with my breast surgeon on Tuesday and had my LAST CHEMO yesterday. Very exciting week!

I really like my breast surgeon. Her manner inspires confidence and puts my mind at ease about this big step. I felt this when I first met with her a few months ago, and again this week. She took a lot of time to explain everything I should expect to happen and answered my questions. She was pleased with my reaction to the chemo, although it doesn't change the fact that the breast needs to come off. She will also remove 8-15 lymph nodes, depending on what pathology says when they get in there. I'm not excited about losing the lymph nodes and the potential for lymphedema, but it's better than being dead.

Since the MRI showed the tumor was starting to pull on the pectoral muscle, there is a chance she'll have to take some of it, but maybe not. If she does, it will be a thin sliver about the thickness of a piece of lunchmeat and shouldn't affect me terribly. She told me about a woman who whipped her at golf recently who had her entire pec removed...if she can play golf that well with the whole muscle gone, I think I can deal with a sliver. And I can always build it back up, right?

She will also remove the chemo port during surgery. It will be nice to have it gone, although it really doesn't bother me. Most of the time I don't feel it. I'll have two drains put in, which will have to be emptied a couple times a day and the liquid measured (gross). If I keep my right arm still and at my side, the drains will come out in 1-2 weeks. I'll be in the hospital overnight. I should be able to start doing exercises to regain range of motion in my arm after the drains come out. Most people say they start resuming light activity within 3 weeks and go back to work in 6, but by that time I'll be in radiation and I don't know how much work I'll be up to so I'll have to continue to plan to take it easy.

Sutter continues to impress me...she said they'll give me a care package at surgery with a bra and shirt for me to wear during recovery, as well as a thingy to hold the drains. I was considering buying a heal-in-comfort shirt for $115, so this is really nice!

I decided to go with a unilateral mastectomy instead of a bilateral for several reasons, and Dr. Eaker was fully in agreement with my decision. 1. Since I'm BRCA negative, the chance the other breast will develop cancer is not that high. If I do, since I'll be scanned relatively frequently from now on, it'll be caught early. Even if I have to go ahead and remove it in a few years, it's that much more time I have a breast. 2. Rates of survival in my type of case is the same whether you remove one breast or both. 3. There are more complications and a longer recovery time for a bilateral mastectomy vs. unilateral. Unilateral is an easier, shorter surgery.

When this journey started, everything I faced was very overwhelming. I had to force myself to focus on one thing at a time. The next test. The next appointment. The next infusion. Over the past couple of weeks as the end of chemo approached, it was time to start looking further out at the next two legs of my cure. I like to know what to expect from everything I I will feel, how it will affect my life, whether I can do anything in advance to prepare. Getting these appointments in with the radiation oncologist and the surgeon were really helpful in calming my anxiety and making me feel prepared. I've been going a ton of reading as well. I'm not excited about any of this, but at least I feel ready.

So yesterday was my last chemo infusion. Very exciting! It went well, and so far I still feel fine per my usual pattern. We brought in cookies for the staff and patients to celebrate, and they had me ring a cow bell and gave me a certificate signed by all the staff marking the end of my chemo.

The doctor was very positive about my progress, and I'll see him for a follow up in 3 months. He gave me something for the hot flashes, although last night it didn't seem to help. I'll take it for a few more days to see if it needs time to be effective, but if it doesn't work by then, I won't bother.

The final link! I've saved them all and will
do something decorative with them.
The nurse told me to wait 3 weeks before removing all my restrictions (food, exposure to crowds, etc.). However, the doctor said those were really developed for people who have a low white blood cell (WBC) count for a long period of time. I was only in chemo for four months, which is not as long as a lot of people, and my WBC count stayed in normal range the whole time. So, I'm really not in any danger although he did say to continue washing produce if I eat it raw. He said he doesn't even restrict sushi. He often quotes studies and the reasons behind things, which I really like and inspires me to trust him. So, I may start adding back in some of the things next week when I'm feeling better, but just to be safe I may wait until the 3 week mark for the more questionable things (like sushi).

Up until now, I've had a neulasta shot the day after each treatment to boost my WBC. He said it was up to me if I wanted it this time, as the primary reason for giving it was to keep my treatments on schedule. I decided to skip it to reduce side effects and recovery time. My count actually went up this time, as did my red blood cells, hemoglobin, and hematocrit. So, I'm hoping I'll have less bone pain and fatigue and will bounce back quicker. My energy the last few days was definitely improved over the last couple of cycles. I'll consider myself officially done with chemo when the majority of the fatigue passes and I start feeling well again.

We're going to take a little trip to Half Moon Bay in 3 weeks to celebrate, and we're talking about taking a big trip after radiation. I can't wait! We are also talking about getting more walks in and increasing that to get my body back into normal mode since I've been so sedentary the past few months. We'll also work on correcting our diet, but probably not until after radiation is over as I'm already suffering enough. It's nice to be able to talk about life getting back on track and being able to do things I've been away from for so long.

I'll probably start posting less frequently as there will be less to report, but I will continue to let you know how I'm doing. Thank you for continuing to follow my journey!

Saturday, October 24, 2015

Visit with the radiation oncologist

Yesterday I met with the radiation oncologist. It was quite a long visit with an exam that included testing my strength and reflexes as well as palpating the breast tissue (he was pleased with everything) and a long conversation about next steps. I'll try to cover all the highlights. It didn't go quite as well as I'd hoped.

Although the surgery decision is up to the surgeon and me, he recommended I go with a mastectomy of the right breast. He said I'm a high risk for local (as in, the same area rather than the other breast or another area) recurrence, so we need to do everything possible to make sure that doesn't happen. As much as I would have loved to go with the less invasive surgery, I am totally on board with doing everything possible to keep the cancer from coming back. So, I will go with that recommendation.

He also said I might want to skip the tissue extender (which would A. give me some symmetry until reconstruction and B. get the area ready for reconstruction as far as room goes) because he suspects the surgeon will take some of my pectoral muscle since it was affected by the tumor and there could be increased risk of complications with the TE. Also, he suggested waiting a whole year after radiation to get reconstruction to make sure I'm really cleared of cancer. So, that means wearing a prosthetic so I don't walk around with one boob. It's a bummer, but there are worse things (knock on wood).

Because of my risk and there's some skin involvement (I mentioned the red patch of skin early on--it's reduced greatly but still there), he will treat me more aggressively than most people. I will have 25 treatments to the whole area (to capture the involved lymph nodes next to my breast bone) and 5-8 more (probably 8) to just the part where the tumor was. He said I will sunburn and blister...and if I don't blister, he will keep blasting me until I do, because that needs to happen in order to ensure the skin is thoroughly treated. Joy. On the bright side of that, the skin where my breast will no longer be won't hurt, because it'll be numb. The worst part will be on my armpit, since there will probably still be sensation, and the skin-on-skin contact will be uncomfortable.

I'll have permanent scar tissue on my lungs that will show up on scans, but it shouldn't affect me too much. There is little risk to my heart since we're only targeting the right side. There will also be some scarring of the chest wall, which could affect reconstruction.

Radiation generally starts 4-6 weeks after surgery, depending on how long it takes me to recover. I need to be able to put my arm above my head, and the probably dissection or removal of the lymph node in my armpit may make that difficult. There won't be any restrictions on my diet or activities other than no sitting in hot tubs or nude sunbathing--no problem. My energy will probably be affected, especially in the last 2-3 weeks. That's nothing new, but I hope it recovers a bit before radiation starts so I have a chance to feel normal for a little while, at least, and get some exercise.

That's everything that I remember and that we took notes on. Next up, meet with the surgeon on Tuesday. Last chemo on Wednesday.

Michael is feeling better, although not 100% and we're giving it another day before we have contact. His son is over it already. So far, knock on wood, I am asymptomatic so maybe our precautions worked.

Mentally, I'm fine with all the news even if it wasn't what I wanted to hear, because I was already resigned to it anyway. Mostly I'm feeling lonely and pissy about being quarantined. Just another day or so!

Thursday, October 22, 2015

Argh! Germs!

So it finally happened. I thought we'd be able to get through chemo without anyone in the house getting sick, but I guess it was inevitable. Michael and his son both have a cold. Of course, it's unfortunate for them...they both feel awful and I feel for them. I don't mean to make their being sick about me,'s also a pain in the ass, because now I'm under quarantine. Michael will have to sleep in the other room and we can't be together...for the brief moments he comes in, he has to wear a mask. I probably shouldn't leave the room unless I have to. It sucks for both of us. Chances are, I'm already exposed and will get sick anyway, in which case I'll be miserable but at least we could go back to normal.

The not-worse-not-better-just-differentness continues. The neuropathy (tingling and numbness in my extremities, mostly my first three fingers on each hand and first two toes on each foot) has gotten a little worse this time. It faded in previous cycles, so I hope it will this time, too. I've heard reports of people having it for the long term and that scares me, but I suspect that's rare. I hope the fact that I am on the Taxol for such a short period of time will mean it won't last long. My nose no longer drips all the time, although I often feel a little stuffy but not too bad. I seem to have regained some tolerance for spicy (mildly, at least) food.

But I am so, so tired. All the time. I know I say that a lot, but it's frustrating and depressing. Most of the time, I don't feel like getting on the computer. I have all this work people are relying on me to do, and I have a hard time getting to it. "But, Jennifer, your job is to heal!" you say. Yeah, but it doesn't change the fact that people need things done and I need a paycheck.

All I feel like doing is watching TV and playing on my tablet. Sometimes I lie here, eyes closed, wanting desperately to nap but unable to sleep. I did muster up the energy to go out for dinner a couple times, and it was nice to get out of the house for a bit.

People often ask if I'm going stir-crazy. Yes and no. On the one hand, I have several ways of getting on the internet, which provides lots of entertainment and social interaction. I chat with friends often via facebook or text. II have kindle and all Amazon has to offer. I have all kinds of games in numerous formats I can play, whether alone or with Michael (when he's not sick, that is). And cable, Netflix, Hulu, and Amazon Prime. So, I have plenty of entertainment, although I still get tired of my options sometimes.

On the other hand, I'm anxious to get out and do things I haven't been allowed to do. Dance. Go places. Play. Friends are going on vacation and I'm dying to go somewhere. I want to go to Disneyland especially. We're making plans to go somewhere for a short, close trip after chemo but before surgery, and then to Vegas right before Christmas and radiation. I'm really looking forward to that. Not only because I'll be somewhere different having fun, but because it will mean I'm past this part. We'll have to keep it low key, but I'll take what I can get!

It will take time for my body to recover from this and my energy levels to return...and of course I'll also have surgery to recover from and radiation will also cause fatigue. So I don't know when I'll feel anywhere close to my old self or be able to resume my normal activities. I'm trying not to get too down about it. But I'm tired of being tired. Please, don't say, "Of course you're tired! You're going through a lot!" I already know that. It doesn't change the fact that I'm tired of feeling like this.

Tomorrow, I meet with the radiation oncologist. I'm looking forward to learning a bit more about that step and what to expect. Then the surgeon on Tuesday, when we'll make the final decision about which surgical route we'll take. Then--fingers crossed that I don't jinx it--my last chemo on Wednesday!

Tuesday, October 13, 2015

What do you mean I have limitations?

I'm still struggling with the fact that I have limitations on how much my body can do. I have always been one to continually push myself (and therefore it really pisses me off when someone assumes I am being lazy). Generally I go until I exhaust myself. Since I got sick, that happens far more rapidly than it used to. That's been since what, June? and I still haven't accepted it. I have a hard time reconciling that a few months ago I was running for miles or dancing for hours. Now, just doing a load of laundry is a triumph. Sad. I know, I's temporary and I'll be back at it in a few months. But it's a continual aggravation.

Saturday we went to Apple Hill as part of my birthday celebration. For those of you who don't live here, it's an area up in the mountains where there are probably 100 or so orchards, pumpkin patches, wineries, and Christmas tree farms. From Labor Day until Christmas, hundreds of people flock there to look at crafts booths, eat yummy treats, buy fresh produce, there are activities for kids, etc. I usually like to go to three or four different places, load up on a ton of stuff I don't need to eat, enjoy the fresh air, etc.

The place has gotten so popular that the traffic is absolutely crazy. What should have been a 30 minute drive at most took about an hour and a half because we sat in traffic for so long. Consequently, by the time we got to the first place I was already exhausted...from sitting in the car. Seriously? I even lay my seat back and rested for part of it.

We walked around for a bit, then sat for about an hour and ate lunch (amazing BBQ tri tip sandwiches) and listened to a great band. Walked around a bit more, then bought apple donuts and fritters and sat while we ate them. By then I was out of energy. We hung out just long enough to pick out some apples to bring home, and then it was all I could do to get to the car. It was fun and totally worth going...but yet another reminder that I am nowhere close to normal. I don't know what I would do if this were a permanent state of being, and those of you who deal with chronic fatigue and other illness of the like have my sympathy and respect!

Tomorrow I have chemo #7. I can hardly believe we are getting so close to the end. I feel like I didn't even really recover from the last one, but I'm anxious to get it over with. Just a few more weeks of this! Dreaming of what to do with my life when I'm all better...

Friday, October 9, 2015

Cancer didn't ruin my birthday!

Thank you all for the wonderful birthday wishes! You had me smiling all day, and last night I was literally in tears with the nice sentiments and words of encouragement. If I didn't respond personally to your post, please accept my apology--it was unintentional--but I think I got to you all. I don't feel deserving, but I graciously and humbly accept your support and love. It means a great deal to me, and you definitely help me stay positive and get through the hard days.

We're spreading out the birthday celebrations. Last night, we gorged ourselves on calamari and lobster. I wore my red wig with a scarf Michael gave me for my birthday, and it looked super cute. (I planned to get a photo, but we were rushing out the door to make our reservation on time and then I was pretty hot--thank you, hot flashes--in the restaurant so as soon as we got in the car I ripped it off.) Tonight, dinner and ice cream cake with the kids. Tomorrow, Apple Hill. I haven't been in years, and I don't know how much I'll be able to do there so I'm definitely prioritizing. I have to make sure to get some apple cider, apple donuts, and an apple pie to bring home!

I feel fine, but my energy level is still quite low. I made several trips downstairs yesterday and then out to dinner, and I was exhausted last night. It's amazing how little activity I can handle. It's nice to be able to go out and enjoy a nice dinner, but it still galls me that that's all I can manage.

I miss dancing terribly. Several of the places I like to go do birthday dances where you take the spotlight and dance with a bunch of different people for a song and I love doing it, but rarely get to--one year I had tendinitis in my shoulders and couldn't lift my hands above my head, one year I had a horrible intestinal flu, and now this. I toyed with the idea of taking the risk and going to tango tonight--we talked it over and weighed the risks of getting sick--but ultimately I decided my energy level is just too low to make it worthwhile. I'd be too frustrated at how little I can actually dance, so it's better to not go at all.

Just two more chemo infusions, then a couple weeks of side effects and recovery. Surgery should be the week of Thanksgiving and radiation should start the week of Christmas. Not ideal, but there are worse things. We can celebrate early if needed. I meet with my radiation oncologist on the 23rd to get more info and the surgeon on the 27th for my pre-op and to finalize my decision on which surgery route I'll take. The tumor, as far as I can tell, is basically gone. It's a matter of how much cancerous tissue there might still be in there vs. healthy tissue (and let's be honest, I don't have a lot of tissue to start with), risk level, etc. I will, of course, report when I know what's going on.

Exciting to watch that countdown get lower and lower and know that I'm getting closer to being done!

Monday, October 5, 2015

Not better, just different

Added the charm for chemo #6, a horse head.
Running out of  ideas!
I had hoped Taxol would be better than the Adriamycin/Cytoxin (AC) combo, but so far it's really not. I don't know that it's worse, just different (unless I break out in hives again. Then it will be officially worse).

The fatigue is just as bad, although my heart doesn't get racing after simple things like brushing my teeth, so I think my blood counts are bouncing back. I've been sequestered in my room since Friday, curled up in bed, and this is the first time I've had enough energy to get the computer out. I threw up once on Saturday, which is new. I don't know why.

There is bone pain with Taxol, although only for a couple days (the worst was on Saturday). I'm taking L-Glutamine for that and I think the pain this time was actually not quite as bad as last time. It's not unbearable, but it's not pleasant. On the other hand, Taxol doesn't seem so hard on the mucus membranes--I had a couple sips of soda today, and for the first time in months it didn't hurt to swallow (the carbonation was getting to me before). I also had less of an issue with my mouth last cycle, so I hope that continues this time. I should start feeling it tomorrow if there are going to be mouth sores. Still taking the L-Lysine.

I'm still pretty exhausted and am probably about done on the computer after doing a little work. Just thought I'd give a quick update.

Thursday, October 1, 2015

On perspective

Chemo #6! I chose to wear the first bandanna
I wore, because after my week of respite I was
recharged to take on the first of the last three
treatments and get this thing over with!
Update on how I'm doing at the bottom. But first, my philosophical thought for the day!

A boss once told me, "Perception is 70% of reality." In other words, if you perceive something to be true, it is true to you. Two people can walk away from the same experience with wildly different perceptions of what happened or how it made them feel.

Often when I hear a friend (usually on facebook) talking about having a cold or some other trouble, when I express sympathy they will reply with something like, "At least I'm not going through what you are! I don't have cancer...I shouldn't whine." But you know what? We're all going through our own battles. And when you feel cruddy, you feel cruddy. Whether it's cancer, or a cold, or an annoying legal matter, or whatever, the fact that I am suffering in a different way (possibly worse, but in some ways maybe not) doesn't mean you're suffering any less than you are or that you don't have the right to whine about it. Within one likes a Debbie Downer.

Even though I have cancer, which is a pretty good excuse to whine, I really don't have it so bad. When I hear about cases where the cancer has metastasized or is inoperable or the person is having way worse side effects, it makes me feel a little guilty. What right do I have to be blogging about this, whining about my measly four months of chemo, when some people have to have it for a year, or two, or the rest of their life? Why should I complain about a bout with hives or mild anemia, when some people end up in the hospital every cycle for low blood counts? Why should I feel sad about having cancer and my body being changed, in some ways irreparably, when some people will lose their fight? But then, I remind myself I have the right to have my voice heard, too. And it always makes me happy to hear that sharing my thoughts and experience helps someone else.

I do think it's good to get some perspective, though. When you're feeling bad, and you don't see an end in sight, it's very depressing. But if you can remind yourself it could be so much worse, I think that's helpful. And when facing a long journey, I think it's less depressing to focus on the present, the next step, and enjoying your life in whatever way you can. Obviously, you have to do some planning for the future as far as finances, wills, etc...and sometimes it's fun to plan celebratory things for when milestones have been reached, but other than that, I try not to think about how long I will be out of commission.

A couple other things people have said gave me some pretty good perspective. I was complaining to Michael last night about how some aspects of my body are being permanently changed without my consent or input. He pointed out that as we age, a lot of that stuff happens anyway. We don't get to enjoy our youthful bodies forever, and everyone faces that. OK, fair enough. I was chatting with a cancer friend a couple weeks ago about mastectomies. She pointed out that she had awesome breasts for many years, so even though she'll now have reconstructed ones, "I had my day." I have to say, that's a pretty good lesson. I spent many years being overall pretty healthy. No surgeries, no real major illnesses, I don't even have many allergies. So, I had my day. 42 may be young for cancer, but it's the first really awful thing I've dealt with, so that's not so bad. And much of what I'm dealing with is temporary. So I'm going to go ahead and suck it up.

As for how I'm doing...I had infusion yesterday, and so far so good but the first couple days are usually pretty easy. Energy levels aren't bad, and I generally feel pretty good. I didn't get enough sleep last night despite a double dose of Trazodone (too much on my mind, I guess, including composing this blog post), but most nights I'm getting enough. The tumor is all but gone--you can feel where it was, but it's hard to find the actual thing. The doctor was very pleased. And I still have two more treatments to hopefully knock out any remaining baddies.

Love watching that chain get shorter!
Trying to think of something fun to do with
the links to save them.
I'll be making an appointment soon with my surgeon to start finalizing plans. We originally talked about a double mastectomy, but that was before I found out I have no genetic mutations. We talked about a single mastectomy since my tumor was large, poorly differentiated, and had started into the chest wall, but that was before I started chemo and responded so well.

My medical oncologist's nurse said I might consider doing a lumpectomy and having them examine the tissue to see if it's still cancerous. If it's not, survival rates are about as good as having a mastectomy. And if it is, I can always go back and have them take the rest. If I start with the more radical procedure, I can't go back. I'm sure they'll have me come in for mammograms every four months for the next couple years, so if anything shows up it would be caught early and I wouldn't have to go through as much to get rid of it. I would love to go with the least invasive surgery possible, but I will discuss with my surgeon and go with her recommendations. So, we'll see.

As for timelines, the doc said usually surgery happens four weeks after the last chemo (which would be the week of Thanksgiving), and radiation starts four weeks after surgery (which would be the week of Christmas). I'm not sure what the docs will want to do with the holidays. The medical oncologist said he'd refer me to the radiation oncologist so I can meet with him to find out how much I'll need and if he wants to start during the holidays. Apparently, they don't like to delay radiation so I might be stuck with it.

Happy to be nearing the end of this part of last chemo is THIS MONTH! Yay!