Friday, December 25, 2015

Coming along in my recovery

My hair five weeks after the last chemo.
Eyebrows are coming back, and every day
I look just a little more normal.
I can't believe it's Christmas already. The holiday season just flew by, although I did get to enjoy some fun times with my new family. Tomorrow I head off to Pahrump, NV, for a few days to spend time with my mom, brother, and son.

I haven't kept up on the blog much as typing is still not very comfortable and what little time I spend on the computer I'm frantically trying to get some work done. Deadlines are wooshing by so fast that if I had hair, it would be a rat's nest by now! Thankfully, my clients have been understanding so far but I really need to get back on track.

I've been doing my physical therapy exercises every day, and I'm surprised at how quickly I'm regaining range of motion. I can once again wear clothes that pull on over my head instead of having to wear only button-up tops, so that's nice. And I'm able to help out around the house a little bit. But then I'll do the exercises and some housework or shopping or something, and I'm wiped out or in pain. It's not terrible, but it means I have to lie down and rest--so often my plans to work or whatever get put off. Kind of like the way things have been since all this started! My energy is generally quite good--I can get through a busy day of normal activities without crashing. I even wrapped a bunch of presents yesterday and today.

So I'm looking forward to returning to normal life. I have my radiation simulation appointment on January 14 and will start treatments about a week later, and that will go on for six weeks. Then I'm done. I should feel pretty good until about the third or fourth week, when the fatigue will set in again. So I'm trying to get out for walks or at least shopping so I'm moving around. I got a bike for Christmas, and I'm looking forward to riding it as soon as my arm is just a little better. Maybe even in a week or so. I think I'll be ready to do a little dancing by then, too. When radiation is done and I've had a couple weeks to recover, I go back in training! I can't wait to get this extra weight off and get out with my running buddies again, working toward goals.

One of these days, I'll do a post describing how the surgery went, as well as "what I learned from chemo," and other helpful things like that.

Merry Christmas, everyone!

Monday, December 14, 2015

I'm cured, but it's not over yet

If you missed the announcement on facebook, I found out last thursday that the pathology report from my surgery came back clear. No residual cancer, four lymph nodes removed with no trace of cancer--the chemo basically melted it all away. I'm cured! However, this does not mean I'm done and get to go back to my life now. Not yet. I still have to do the six weeks of radiation treatments starting in January as a preventative measure against recurrence. Then it will be a few more weeks before I start to feel normal again.

This is the first time since the surgery almost two weeks ago I've felt up to getting on the computer and typing, so I'll keep today's update brief but will give a complete accounting of the surgery experience in another post.

I'm slowly getting a little better each day. I still have one drain in from the surgery, so I have to be careful not to pull on it (ouch) or try to lift my arm over my head. Yet, I have to do low exercises with my arm to keep the shoulder from freezing up. I am able to do little things like use a fork or my tablet, but the range of motion is definitely limited and I get sore if I try to do too much. I try to get out for some kind of walk each day, even if it's just shopping. the pain is not bad at all, and often I don't feel any. The worst is having to sleep on my back until the drain comes out, and even then the soreness in my right armpit will make it difficult to sleep on my side, I think. I'm generally propped up on pillows.

I haven't taken a full look at the surgery site. I've glanced down from above, and it looks weird but not scary. I'm not ready to get a full frontal look...that will be too real. I know, I'm just being silly at this point--after all, it's been almost two weeks. Soon. If this is in your future and you want to see what it looks like, I'm happy to take a pic for you. I just figure not everyone wants to see that!

That's it for today. I'll work on a post about my surgery in the next couple days.

Wednesday, December 2, 2015

Not much time left

I feel like this break between treatments has gone by way too fast. I wanted to do so much...go to Apple Hill again, get a lot of work done, get a lot of exercise, do some dancing. Time got away from me, and although my energy is better than it was a month ago, I still get tired fast and I just wasn't up to doing everything I wanted to do. And now surgery is tomorrow and I accomplished almost nothing.

Surgery is the part I dreaded the most. I know chemo is the worst and it's behind me, and it was definitely dreadful, but a mastectomy is so permanent. By this time tomorrow, I'll be minus a body part. Disfigured. Scarred.

People try to say things to make me feel better about it. I won't see you any differently, Jennifer. Your scars are a badge/symbol of what you've been through, Jennifer. Better a boob than your life. etc...those are all true and great. Honestly, if anyone is going to think less of me because I'm missing a boob, they get an express ticket out of my life anyway. I'm not really worried about what anyone else thinks of me (as long as they don't think I'm something I'm not). It just sucks, because I don't want this to happen.

Mostly, I've made peace with it. I know it needs to happen. I'm not bitter or angry. I'm just sad and a little depressed. I'm doing a little self medicating today.

Monday, November 30, 2015

Countdown to surgery

I have just a couple more days until surgery. It's been nice to have this break from cancer stuff...I can almost forget I have it, except for the bald head, weight gain, and getting winded if I walk up the stairs too fast. So surgery is Thursday, and then my "cancer vacation" will be over. I check in at 10:30 for a 12:30 surgery. I'm not sure how long it will take, but probably a couple of hours. I'll be asleep, so that part will be easy for me. Then I spend the night in the hospital and leave in the morning after the doc makes sure I'm not hemorrhaging or anything. I probably won't post on this blog while I'm there, but I'll try to post quick updates on facebook or have Michael do so.

Once I get home, I'll have Michael to take care of me and a big wedge thing to sleep on to make me as comfortable as possible. I should feel pretty bad for a few days, but after a week or so I'll start to feel better. Then a few weeks of recovery before radiation begins. I'll be done with treatments in just a few months. I think I'm more nervous about recovery than the actual surgery.

I had an awesome Thanksgiving. Dinner with part of my family on the actual day, then another one on Saturday with Michael's kids and a couple dear friends. We laughed, ate, talked, all to excess. It felt wonderful to be surrounded by so much love and to laugh until I was sick. I am extraordinarily blessed to have an awesome family--both sides of it--full of caring, intelligent, fun people. I am so thankful for them, for my support network, and that this cancer journey has not been as bad as I feared it would be. I was on my feet for most of Saturday cooking and going through Christmas decorations, and I held up through all of it. I was pretty sore and tired yesterday so I took it easy, but I'm happy with how much I was able to do.

Please keep me in your thoughts on Thursday!

Wednesday, November 25, 2015

Continuing to improve

Things are continuing to improve for me. I've been able to dance a little--even some swing last week (lindy and balboa), although I think I did a grand total of four songs with a song to rest in between. It was good to get out and see my friends.

We went to Half Moon Bay for our End of Chemo Celebration and had a really nice time. Mostly we sat and looked at water, walked on the beach, and ate. We really wanted to see the tide pools, but the tide was too high so now we have to go back another time. I kept up pretty well energy-wise, although I am certainly nowhere close to normal.

Previous to the trip, I had gotten out for a few walks, 20-30 minutes at enough pace to get my heart rate up, but I've been lazy ever since we got home so I need to get back on track. We've also gotten out for some lengthy shopping trips, and I held up pretty well. In fact, I keep up with Michael for the most part when it comes to regular daily activities. It's just things that require more energy, like dance or long, quick walks that I get tired more quickly than I used to. I'm also dealing with the extra pounds I put on during chemo. We're making some healthier eating choices to try to get some of that off, without stressing me out too much about food since I still have a lot to deal with. One thing at a time.

I talked in a recent post about how I feel weird going out in public bald, so I always cover my head. The funny thing is, twice since that post I've literally forgotten to put something on until we were in the car and it wasn't worth it to go back, so I went out bald. I totally didn't die. I will probably continue to cover for the most part, but at least I feel less weird now. The hair is growing slowly, but it is getting thicker and a little longer. Still hard to see it in the pics, but I can feel a difference when I run my hand over it.

Surgery is a week from tomorrow. I'm torn between being anxious about getting it over with (and cutting any remaining cancer out of my body) and nervous about it. Plus, my port is starting to bother me a little and it's sort of trying to push its way out of my body. So I'd sort of like to go ahead and get rid of that. I've talked to enough people now to know it will probably not be too bad, recovery wise. My new surgeon is nice, and I'm sure he'll do a fine job.

Tomorrow is Thanksgiving, and I definitely have a lot to be thankful for! Here's wishing you all a wonderful holiday.

Thursday, November 12, 2015

Change in surgeon

I just got a call from the surgeon's office, and she will be out another week due to an injury she sustained during an accident. Rather than delay me further, they are reassigning me to another surgeon. I'll meet with him on Tuesday. I'm not overly pleased; I really liked Dr. Eaker and felt very comfortable with her. But what can I do but accept it? Yes, I know I can interview different surgeons, but I need to get this done and there are only so many in this town who take my insurance.

Tuesday night I taught one dance lesson and it went pretty well. My feet are groaning under the weight I've gained, so I really need to work on getting it off. A little bit at a time.

Here is my week two hair picture. It's hard to see in the pics but it does look and feel a tiny bit longer. I'm still guessing it'll come in grey. It's funny...of everything I've had to deal with so far, losing my hair was really the least of my worries. I was far more upset about giving up sushi and the hit to my energy level. It's nice to have it growing back already, but it wasn't devastating to lose it. On the other hand, I have this aversion to being bald in public. I'll post pics here and on facebook and not think twice about it, but go out like that? No. I even feel a little vulnerable taking off my scarf when I go to a friend's house or the wig shop. I don't know why. So there's my "Jennifer is human" thought for the day.

ETA: Just saw my electrocardiogram results from my last appointment. No significant changes since before chemo, so that's good. My heart rate was slightly higher but still very comfortably in the normal range. So, no damage from the chemo.

Tuesday, November 10, 2015

Small steps, big excitement

I'm really amazed at how quickly I'm recovering from chemo. This is just day 14 since the last treatment, and I'm feeling a little stronger every day. As I posted on facebook last night, I did some tango last night. I snuck up to Grass Valley to take Sean Dockery's class with my dad (Sean and Juliana are great teachers, BTW, although she wasn't there last night). It was a good opportunity to see how my body would respond in a low-pressure setting and get a visit in with Dad at the same time. I also introduced Michael to tango and he liked it, so that was fun. We got there about halfway through the beginning class and they were short on women so I stepped in, then there was a short practice session (called a "practica"), during which I did a couple songs with Dad and Michael, then the intermediate class.

In sum, it went as well as I could have expected given that I've had very little exercise while pumping my body full of toxic chemicals for the past four months. I've lost a lot of core strength and my balance is a little compromised, so some movements were challenging. During the second lesson, I had to sit down to rest whenever the teacher was talking, and while practicing I'd be panting and sweating. By the end of each song I was struggling. Finally, I decided to call it and sat out the rest of the class. I was able to dance a couple more songs during the practica afterward.

Riding home, I was bone tired...but soooo happy. Again, it's a feeling like after you work out, which feels good. I just love this feeling of getting out and being active and feeling like my muscles got used. It's weird to think about how different things are now from just a few months ago, but I'll get there. I may have to stick with tango for quite a while as I don't think I can manage swing or ballroom (other than teaching, which isn't too much of a strain). I'll take it!

Sunday, November 8, 2015

Energy returning!

This weekend has been awesome. I feel better than I have since before I got sick. Although I don't think I'll be lacing up and running five miles any time soon, my energy is so much better than it was even a week ago. Yesterday I: had brunch with friends, shopped at Target, walked 3/4 mile around McKinley Park, helped take down our Halloween decorations and did some other household chores, went out to dinner, and then shopped at Home Depot. I was done by the time we finished the last stop, but when we got home I wasn't so exhausted I felt sick or anything. In fact, it was more a feeling of my muscles not being used to doing that much work. Kind of like the feeling after a good workout. What an awesome feeling!

I took it a little more easy today, but we walked for 20 minutes at the mall (it was raining and that was the best place I could think of that would be inside) and then shopped for probably an hour after that, and although my feet hurt I wasn't exhausted. I'm planning to get out and walk for at least 20 minutes a day and work my way up to doing more. I want to have a little fitness back before surgery to help with recovery, then get back to it as soon as possible after that until the fatigue from radiation slows me down. I'm even going to teach a few dance lessons and do some dancing.

I'd signed up for the California International Marathon (Dec 6) earlier this year because I'd planned to run it, but of course getting sick sidelined that. I just processed the deferral so I can run next year instead. That cost me an extra $49 on top of the entry, so that is a lot of money to waste if I don't run next year. Therefore, I have to do it, right? I can't think of a better way to say F*** YOU to cancer than to run a marathon, can you? And I know my awesome running buddies will help me get there.

I love my friends.

Thursday, November 5, 2015


We're calling it!

It's been a week (actually more now) since my last chemo, and the majority of the side effects are gone, so we decided to declare chemo officially over. I'll still hold off on the riskier foods for a couple weeks, and it will take a little time for my energy to return and the neuropathy to go away, but I feel so much better. So, that phase is over for realz. Huzzah!

Just when I think I can't love this man any more than I already do, he surprises me yet again. Remember the racing bibs he was making to mark the end of each cycle? He got me a finisher medal for the last one. On the back, it says, "Presented to Jennifer Walker for Chemotherapy Completion." When he gave it to me, I cried. I do that a lot, I'm afraid. I am such a sap.

The other night we went shopping at Ross, and in the changing room I noticed something in the mirror. Usually I don't get that close to mirrors because there's a counter or whatever in the way and, to be honest, I don't stare at myself in mirrors very often anyway. But in the little changing room, trying on clothes, it was right there and I was staring at it.

And I saw a hair. One white hair, about an inch long, sticking straight up from the top of my head. And while I've had short, soft, thin peach fuzz all along, I realized I had more and it was longer. I ran my hand over my head, and it felt fuzzier. I was not anticipating this so soon...I figured it would be at least a few weeks before I started to notice any growth. I think I'll take a picture every week to chart the progress and then post a slideshow when I have a decent amount of hair. It's probably hard to tell in these pics, but it's there. Michael concurs there is definitely more there, so I'm not crazy! OK, I might be crazy. But I'm not imagining it. :P

Bracelet with the charm for chemo #8, a running shoe.
I'll add one for surgery and one for radiation, then one for the cure!

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!

Monday, September 28, 2015

New drug, new side effects

It's been a while since I posted...I was feeling too awful to even get on the computer for a few days, and then when I did it was to do some work and get off again. I posted about this a bit on facebook, but I thought I should capture it for posterity here on the blog as well as fill in the details and updates.

So almost three weeks ago now I got my first infusion of Taxol, and I've already talked about how it went for the first week or so. I figured I was pretty well out of the woods and on my way toward getting better and better and ready for the next one, scheduled for last Wednesday (the 23rd). Monday night (the 21st), we had some friends over for dinner and games. I noticed I had a couple itchy spots, but didn't really think anything of it; plus, I was distracted by the games and company. As we were winding down the night and the excitement wore off, I started feeling considerably more itchy. After our friends left, we discovered I had hives over part of my torso and on the inside of my thighs. I called the after-hours number for advice, took Benadryl, Michael ran off to the closest 24-hour drug store for some anti-itch lotion, and we finally went to bed.

The next morning, the hives had spread and there were about double what had been there the night before. We called the doctor again, and he prescribed a stronger antihistamine. Michael picked that up along with some other cream since the first two didn't really work. The itching was insanely bad. Torturous, even. That night, we realized I had a fever as well. It got as high as 100.7 so we called the doctor again, but they said to just monitor it and go to the ER if it hit 102. We set our alarm to wake us up every four hours to keep a steady flow of antihistamines going as well as to monitor my temperature.

The hives continued to spread and I continued to suffer. Wednesday we went in for my appointment, and the doctor agreed that I shouldn't do chemo that day. He also said I could up the dose on the antihistamines. Michael went back to the store and this time got Burt's Bees Aloe and Buttermilk lotion, which ended up working better than everything else we'd d tried.

The blood work showed my WBCs were high (good I guess, since I was fighting an infection) and RBCs, hematocrit, and hemoglobin were still slightly low but higher than the time before. I have noticed the fatigue is not so bad and I can do more physical stuff without getting tired or getting my heart racing.

Anyway, on Friday I woke up with no hives. There was still some residual itchiness, but it was very mild. My temperature was back to normal. What a huge relief! It felt so good to be back to...well, the new normal. And I was able to have a good weekend and visit with friends.

As for what caused the rash, it's hard to say. It's not an uncommon reaction to Taxol, but usually it happens in the first 24-48 hours, not nearly two weeks later. We did read that Taxol can create sensitivities to foods you previously had no allergy to, so I could have a new food allergy. Most likely suspects, judging from what I ate on Monday, are pistachios and strawberries. So, I won't eat any nuts or strawberries at least until chemo is over just to be safe.

So, my chemo trip will be a week longer than originally planned. While I'm not pleased about that, maybe this week allowed my counts to bounce back a bit and this treatment won't be as hard on me. Only three more to go...I'm kind of excited to get back on track this week and get a start on the final seven weeks of this leg of the journey. Let's do this!

Monday, September 21, 2015

Cancer survival story: Say goodbye to stage 4!

Ev three months after chemo. With hair
and ready to get back in the saddle! 
Here is another great, inspirational story from a friend of mine who is a cancer survivor. Congratulations to Ev for beating this terrible disease, and thank you for sharing your story! My update below.

If you would like to share your story, send me a message on facebook or email me. You can choose whether to include a picture or your full name or stay anonymous.

My Cancer Journey is a little different than Jennifer’s, but still one that should be shared for educational purposes.  September is Ovarian Awareness Month, so on that thought let me begin my story. 
July of 2011 I started to have some abdominal issues, with gastric pain, bloating, irregular bowels (I have always been very predictable in my body functions), fatigued, gassy, and generally just not up to feeling like myself. Phone calls and visits to my GP led to some regular medications for gas and bloating and pain related to that.  Weeks later, I still had the same issues, was more miserable, and off to the doctor’s office again.  New meds, blood tests, and a wait and see again.  My appetite was not good; if you are bloated, having bowel issues, and gas you don’t want to eat.  
Back to the Doctor again, this time for liver enzyme tests, to see if I had a liver issue, as my abdomen was swollen and painful. That came back negative. Then after having been free of menses for over a year, I started again, more bloated and painful. Off for more blood tests, this time for CA125( Cancer test), and an appointment for an X-ray.
X-ray was inconclusive, as they couldn’t see in there, something was blocking their view. I overheard the tech and the doctor talking about sending me to the hospital for more tests. They called my doctor instead, who scheduled me for an ultrasound. Finally on Halloween, there was a diagnosis. Possible Ovarian Cancer.
I went to a Gynocologist/Oncologist in Salinas. He did an ultrasound. I waited several days for another appointment with him, where he informed me that I had a huge tumor, and he did not have the expertise to handle the surgery for it. He sent me to another Oncology/Gyno doctor in Los Gatos for a consult. During this time, my abdomen continued to grow, gain weight, and my ability to move around and do daily activities without becoming physically exhausted and out of breath became worse.
We discussed surgery dates and prices for for the procedure and outcome potential.  They would not do a biopsy until they removed the tumor, which had grown considerably in size, and I looked like I was carrying twins. Financially, our family thought this was doable.  I hadn’t worked since October 31st; my business still existed but I cancelled all appointments with no idea when I would return. My business landlord was kind enough to not demand rents, but waited to hear what I was going to do and when I would return to open shop. The decision was made for a surgery possibly the week of Thanksgiving. I waited for confirmation of the date for this, but was told by the doctor that if for any reason I was too sick to function or felt the need, to go immediately to the ER at the hospital I was scheduled for surgery at and tell them to call him.
I lasted until the Sunday before Thanksgiving. I was full of ascites fluid, and little known to any of us, including the doctors, blood clots. Saturday night and Sunday morning,  I was having what I thought was congestion due to asthma. Sunday evening I asked to be taken to the hospital.  I couldn’t breath.
The trip took a while. The hospital was in Mt. View, which is quite the drive from Monterey County. On arrival I needed to be wheeled into the ER; I couldn’t even walk the 100 feet from the car to the desk.  They took me to an ER bed and triaged me quickly. After some tests to determine that I was full of blood clots and ascites, they made a room up for me, and the Doctor arranged to see me in the morning. I had specialists for lung, heart, and tumor checking on me, and a surgeon trying to figure out when I would be well enough to perform a much needed surgery.  They put a screen in my heart via my neck to catch the clots, so I would not stroke or die.  I was on blood thinners, which would complicate a surgical procedure for me. The decision was made I would have surgery the day before Thanksgiving.  If I didn’t have surgery, I might die.  
On the way to surgery, the anesthesiologist counseled me and informed me he had a better chance of me dying in surgery than making it, but he would do all he could to keep me alive and my brain alive. He hoped to talk to me after surgery.  I have an allergy to demerol and fentynol,  the two most common drugs used for surgery. The decision was to use polypropynol (the Michael Jackson drug) as that was the safest for me.  I survived the surgery which involved removing a 40lb angry ovarian tumor, which was luckily encapsulated, and 14 lymph nodes. Biopsy came back with positive results for stage 3b/4 Ovarian cancer, It did appear it had not invaded my abdomen though!  I was left in a drug induced coma, for about 36 hrs.  
I awoke after having been not the ideal patient or being very nice to family and friends. I don’t remember what  I did or or said. I was under the influence of some some pretty powerful medications, and eventually weaned over to morphine, which is about the only hospital drug my body can handle without going into shock.  I had fluid on the lungs, and I was on IV and oxygen. I needed two lung taps.  I was moved from CCU to PCU, and then a private room with catheters and tubes to drain my belly, IV and nose tubes. I remained in PCU for a week. I remember being whisked away for CAT scans, ultrasounds, and having other machines for tests brought to my room.
Finally the catheter was removed, but the belly tube remained and they were trying to get me to use the facilities on my own.  I tore a stitch over the second weekend of my hospital stay. The nurses didn’t think it was a big deal, it was a little wound, on the big wound. By Wednesday it smelled like rotten meat and didn’t look right.  I had two huge hematomas in the surgical wound, which burst open and left an open wound the size of a dinner napkin. It was a mess, and it couldn’t be put back together with surgery. They packed it like a field surgical wound. They consulted with a wound vac doctor, and it was finally decided that would fix my issue. A little machine designed originally for combat veterans with battle wounds would be used on me to heal. I had a date I could possibly go home.
However, hospitals being what they are, not necessary staffed by people who use the best methods of cleaning themselves between patients, I got C-Dif, a nasty bug given to patients by people with dirty hands. That prolonged my stay by a week and kept me trapped in bed, weak and helpless.  Finally, a few days before Christmas 2011 I got to go home, with a portable wound vac system attached to me via tube and cords. They drugged me up good and sent me off in my daughter‘s little VW bug, on pillows and surrounded by pillows and blankets. I slept most of the way.
I enjoyed a small group of family and friends for the Holidays. Wound Vac still attached. I had visiting nurses 3 times a week to check my blood, well being, and nutrition, and change the vac bandages and reconnect the machine to me. I could not do chemo until the wound healed and the vac was removed. It would be the first of March 2012 before I was healed enough to have the vac removed completely and finish healing with regular bandages on my belly. Middle of March a chemo port was installed, and a week later I began my chemo of Carboplatin and Taxol. Every third week thru the first of July I received my chemo. Week before chemo it was time for blood draws and waiting for results to be sure I was well enough to do the next chemo.
I had to have steroids orally the day before the first chemo orally, after that it was via the chemo catheter, along with a cocktail of things to relax me, calm my restless legs, and kill the cancer.
Always 24-36 hrs after chemo I would experience excruciating pain in my bones throughout my body. Hydrocodone did not help with the pain. So for 24 hrs or so, I would go to bed with a heating pad and as much pain med as I could handle, in a dark room and in fetal position it until the pain subsided. 
There were a plethora of oral drugs given to me or on hand to handle all the symptoms from the chemo meds, pain meds, and steroids. Everything from stool softeners to sleep aids, to pills for stomach discomfort and vomiting. Eating was a chore. Things sounded exciting or tasty until I got them, and then a few bites later I was done. Going anywhere became a chore. Being bald over my entire body felt foreign and alien.  Being too weak to walk from one part of the house to the other was hard, no concentration to read or watch TV, except light programming like daytime talk shows and such. Not being allowed to touch my horses or go places was hard. Driving was out of the question; someone had to take me to get meds, or to doctor appointments or chemo.
By the end of my chemo program, I was anxious that the cancer would be gone. I didn’t know if I could handle another round, and radiation was supposed to be in my future as well. The first week of July 2012 I was done with chemo. It was determined I would not need radiation. I was, for the time being, Cancer Free! 
It has been an uphill climb to resume my life and gain strength. Today I am still ovarian cancer free. I have had my BRCA tests done, and I am negative. This does not mean I can not get cancer again, or that I will survive another 5 to 10 years cancer free. The statistics for ovarian are not promising, but I feel fairly certain, and so does my oncologist, that I should remain clear.  
I urge everyone to be proactive in their health care. Persist if something doesn’t seem right. Ovarian is a very silent killer, as there are few symptoms, except those I experienced, and most doctors don’t go to that diagnosis quickly.
There is life after cancer/chemo. Things will never be the same, but the time spent slowing down to fight against cancer makes our life more meaningful to us, and our goals more within reach. I have learned who I can trust, who my true friends are, what I want out of life, and that simple pleasures mean more than anything, with those you love. 
--Ev Henry 
As for me, I'm doing OK. I still get tired way faster than I wish I did. I do get out a little; today it was lunch and Costco. The rash on my hands seems to be a little better, and I've slept better the past few nights. My hands are a little shaky, but I think that is part of a general shakiness/weakness I've felt since I started chemo. I sometimes hear it in my voice, and I'm generally clumsier and fumble things a lot. I just hadn't specifically looked at my hands to see if they shook until Michael asked about it today. No numbness or tingling, though, which would indicate neuropathy, so that's good.

Now to make sure I get a lot of protein and fluids in me in preparation for chemo #6 on Wednesday!

Friday, September 18, 2015

She went through all this and still beat it!

Following is a story sent by a friend who has been cancer free for several years. The amazing thing about this story is that she had a lot of unusual complications and still came through. My update at the bottom.

If you'd like to share your story, send me an email or a facebook message!

I had my routine mammogram in December of 2010. I got a call I think the first or second week of January that they wanted me to come in for a repeat. While I was there they said they saw something suspicious and they made an appointment with the surgeon so I could have a biopsy. When the report came back it was ductal carcinoma and while there was some encapsulated area, there was also some that wasn't. 

Surgery was scheduled for late February. I had opted for the lumpectomy on both the surgeon and oncologist recommendation. In my case, chemo and radiation were needed because I had an aggressive form of the disease. I was considered stage 3 because there were 14 lymph nodes involved.
So after I healed from the surgery it was time to start chemo. Since the chemo was going to be pretty strong my oncologist suggested I get a port put in. My first chemo was on St Patrick's Day 2011. And so the problems of my Murphy's Law saga begin. The nurse wasn't used to the kind of port I have and also said I had swelling still because the port was new and she couldn't access it. They had already started an IV for the pre-chemo drugs they gave me. So when it came time to get the chemo drug that is the most caustic, not only did she inject right into a vein, but into a small vein. My doctor was very upset and told her to make sure to flush it well.

My chemo day was Thursday, and I wasn't out of there that week until about 4:30. I felt fine and we went out to eat corned beef and cabbage after. I was supposed to go back in the next day to get a shot. The shot helps to keep your white count up and make you less prone to infections because your immune system is basically shot during chemo. So I went in for the shot Friday at 10:30 am. I still felt fine and went shopping with my friend and out to lunch. Well I am not sure of the cause of it and guess it doesn't matter, but did later find out that he shot should be given anywhere from 24 to 36 hours after chemo. So according to my oncologist I may have gotten the shot too soon, and instead of helping me it could have made matters worse. Or it could have been I was just run down, but later that evening I started to feel flushed and didn't feel good. I ignored it because my dog got sick that night and we had to take him into the vet. But after we got home I started feeling worse and took my temperature and realized I had a fever.

Sunday the temperature was 102 and we went to the ER. They said I had bronchitis and that it was going around. They would have sent me home, but since I was on chemo they decided to keep me. I ended up in the hospital for 9 days. I was getting sicker all the time and my hair was starting to fall out. My husband had gotten sick too and was not coming to the hospital that much because he didn't want to make me sicker. Finally when he did come and saw how sick I was we talked to the doctor. I was crying and told him I was going home because I was losing hair and was not going to do that in the hospital. By this time I now had double pneumonia and my white blood cell counts were barely above 0. i had to go home on oxygen and had to see a pulmonary specialist. Chemo was put on hold until I got well.

Also about this time I ran into a problem with food not tasting good. My husband was trying everything to get me to eat. We finally saw a nutritionist who helped with that and told me to eat small amounts even when it didn't taste good. So I finally got back to chemo about mid April. They cut the dose down some thinking that the first chemo could have been too strong for me. That chemo went fine. This visit I even got them to be able to figure out how to access the port. 
The following visit was probably the worst actual chemo session. They went to access the port and it had flipped totally around. A nurse tried to flip it back, but it hurt like heck and she couldn't flip it. The oncologist said he could flip it. Hurt even worse and it wasn't going to move. Hubby finally made them stop because he could see I was in agony. Went to the surgeon's office a day later and saw a different doctor who flipped it over and I didn't even feel it. But he said it probably wouldn't stay flipped. So I made an appointment to see my surgeon right before the next chemo. He flipped it and put the needle and IV tube in at his office and taped it down for that chemo and had me come to the hospital early in the morning before the next chemo where he had to take me to the OR and re-stitch it in place. 
The last 6 chemo sessions went fine as far as getting the chemo. Port worked fine and staff got used to it. But because of being in the study I was in, I got picked for the strong chemo and this one gave me bad pain all over. From Saturday afternoon until about Monday morning I was useless. Radiation was from early September until Oct. 20, 2011.
The biggest part of my story is that mammograms are super important for women who are at an age to have them. And that even when things go wrong you still need to plug along and fight and not give up. And that a good attitude is super important. And to be your own advocate.
I finished my treatment almost 4 years ago and am no evidence of disease. The advice I got was this: "it's hard and it's scary, but do what you have to do. Read up on things from appropriate sources, ask questions, pray if you are so inclined, talk to people and come to the best decision you can about what you want to do. But whatever happens, NEVER look back and don't question what you did or didn't do." That advice will save you a lot of grief.

Thank you, P.T., for sharing your story! I'm happy to say I haven't had any of these issues. As for my update...

I'm getting a little better each day. My energy is returning, and I can do a little more without my heart going into overdrive. Last night, putting on sunscreen to go out practically did me in, but even going up the stairs isn't too bad now if I don't go too fast. I sat at my computer for much of today and got a lot of work done, even with distracting myself with social media, and that's great. Then we had a visitor and went out to dinner, and by the time we were done, I was DONE. Yet, still ok to get on here and finish up this post.

I had no mouth sores this time, and in fact only had the sort of pulling sensation that indicates they're imminent on one day instead of the normal 3-4. I had a mild rash develop on the back of my hands today. I put lotion with aloe vera on it and it subsided a little. The stubble on my head is getting thinner/patchier, and my eyebrows seem lighter but they still look like normal eyebrows. I think my eyelashes are still intact, too. Definitely better than this point of the last cycle, so I'm hopeful that the next one will actually go a little better.

Tuesday, September 15, 2015

Swimming toward the shore

Charm bracelet with my treatment #5 charm, "Dancing
Queen." For the role of dancing in my life (when I'm better!),
but also a little shout out to my friend Cindy Mills.
I haven't posted in days because I haven't been able to get on the computer to do it. The past few days were the hardest so far. I felt like I was swimming in the open sea, barely keeping my head above water. Each day, I got a tiny bit closer to shore and I could see the end in sight, but it seemed so far away. So hard to reach.

I was so exhausted it hurt. Getting up to go to the bathroom or brush my teeth and do my mouth rinse, I'd balance on shaky legs and then after getting back in bed I'd pant until my wildly beating heart calmed. Even sitting at the table to eat was almost too much effort. I had little starbursts of pain that would fire off in various joints and bones on my body. The skin on my palms and feet feels thin, and sometimes it aches after touching something. My fingernails ached the day after treatment so I cut them short to prevent bumping them. I was constipated, and the discomfort in my gut added another layer to the mosaic of misery.

In case you didn't believe he was wonderful
already, Michael brings me fresh flowers
every couple of weeks. 
One night, I broke down in tears because I was so tired of feeling weak and exhausted. Having to get help with simple things is demoralizing. I hate being a burden, although Michael denies I am one. I feel guilty seeing him work so hard while I lie here. The fact that being sick gives me an excuse means nothing. I hate being this way. It sucks. I am not weak. I am the strong one. So many things that make me who I am have been robbed from me. Some of them I'll get back. Some I won't.

Today, I feel like I'm in the shallows. My feet can touch the bottom. I went downstairs to get breakfast for the first time in four days and didn't regret it when I got back to my room. I've been able to sit at my computer and type this as well as take care of some emails. My fingernails stopped aching and my bowels started moving again. I'll be able to do some actual work. I'll get a little better each day, a little closer to the shore, until my next treatment a week from tomorrow. It's a relief knowing I'll finally have a few good days. Hopefully my blood counts will improve and the next treatment will be a little easier.

Wednesday, September 9, 2015

News from the genetic counselor

If I look drugged up, it's because I am!
Benadryl and Ativan.
 So today was a big day. I started on the Taxol, which is the fifth of my eight chemo treatments and a new drug. I also met with the genetic counselor about my test results. They were very surprising: I had NO genetic mutations, meaning my cancer was not caused by genetics. There are no genetic indicators of cancer risk, of any kind they are currently able to test for! How awesome is that? So, whenever I meet with my surgeon I'll talk about the options. I may only remove the affected breast now. We'll see what she says...I definitely don't want to go through this again should it come back, but I don't want to remove an entire body part if I don't have to. We had an awesome dinner to celebrate.

Love watching that chain get shorter!
Delightfully touristy scarf all the way from
Paris thanks to thoughtful friends.
I tolerated the Taxol well; no allergic reaction as I feared (it's rare and they assured me I wouldn't, but I was apprehensive anyway). No nausea or other side effects so far, but of course I'm still fatigued. The doctor confirmed it's my low blood counts--and my labs showed that my RBCs, hematocrit, and hemoglobin are all still low (but about the same as last time so at least they didn't drop more. The white blood cells were they lowest they've been so far but still well within normal range.

Oh, and the doctor seemed pleased with how small the tumor has gotten. We talked about sleep, and he gave me yet another drug to try (Trazodone, which I used years ago). I'm going to try it in combo with Ativan to see if that helps. At least I can take Ativan at 6am and not have it screw up my whole morning. He suggested not drinking fluids after 6pm, but I'm not ready to do that yet.

That's all for tonight. Thanks for all the support today! You all help me more than you know.

Tuesday, September 8, 2015

Still so tired

Tomorrow I go in for chemo #5, the first of my Taxol infusions. The first three treatments, I would feel pretty decent after about a week. This last time, the fatigue hit me pretty hard. I'll be OK for a few hours in the morning, but start to fade by afternoon and am pretty useless in the evening. I did manage to go out on Saturday with a couple friends. Got a new wig and had a great lunch. I'll post pics of the wig after I get it styled.

The fatigue is getting old.  It's probably because my red blood cell, hematocrit, and hemoglobin counts were all a little low last time and now they're probably lower. I hope it doesn't become a problem. I'm bummed that chemo starts again tomorrow with no really good days. However, the Taxol is supposed to be easier so maybe I'll bounce back.

I'm still not sleeping enough. Before you give me advice on how to fall asleep, I've already heard it. I've struggled with sleep my whole life. I'm now on my second type of sleep med since starting chemo (first was Temazapam and now Ambien). They don't knock me out but do help me fall asleep. The problem is I wake up to use the bathroom around 6am (sometimes earlier) and can't go back to sleep. I'm trying to get to bed earlier but don't always manage it. I'm sure that's not helping. Sometimes I can nap and sometimes I can't.

Otherwise, things are going along OK. The tumor feels like it's maybe 2-2.5cm now. It's oddly shaped so it's hard to measure because it feels like it's getting flatter faster than it is losing diameter. I'll see what the doc thinks of it tomorrow. My hair is still patchy instead of the pretty, smooth bald. I wonder if the Taxol will cause the stubble to fall out?

The house cleaners are here today so I'll have a nice clean house for the next few days (btw, a bunch of you told me about Cleaning For a Reason--yes I know about them, no they don't service my area, but some generous friends chipped in for a cleaner and she's giving us a deal. Thanks for thinking of me, though).

Thanks for hanging in here with me, and I'll take all the positive thoughts and virtual hugs I can get for tomorrow!

Thursday, September 3, 2015

All the small things

The past few days I've been pretty fatigued and only getting on the computer long enough to do a work project that has a short deadline, then getting off again as soon as possible. When I talk about fatigue, I'm not talking about feeling a little tired. I'm talking about being so tired that it aches sometimes. Walking downstairs to microwave breakfast, brew a cup of coffee, and walking upstairs leaves me sweating and my heart pounding. Sometimes all I feel up to doing is lying down and watching TV. I can't even sleep. Over the weekend, I never even left my room.

Other times I'm able to sit up and play a game or even go out for a bit, but my energy is pretty limited. Generally, I'll be ok on energy and then suddenly crash and be painfully exhausted. Thankfully, this does get a little better each day until the next treatment. I hear Taxol isn't as bad for fatigue (or nausea) so hopefully I won't have a week like this again.

While that's really the worst thing I deal with, there are a lot of little side effects, too. I don't always think about mentioning them because they're pretty mild, although annoying sometimes. I just thought I'd share them all at once.

My taste buds have changed and anything with too strong of flavor or smell, I don't want. I'll think I want something, then taste or smell it. then can't eat it. If someone is cooking downstairs and there are strong smells, sometimes I can smell it in my room and it's nauseating. I think there are some other minor changes to my taste buds, too. We were eating apples the other day and I said they didn't taste sweet, but Michael said his did. I tasted his, and it didn't taste sweet either. Yet if I eat a piece of caramel, it does taste sweet so who knows.

Like with my energy levels, I'll go along for a while thinking I'm not hungry and that nothing sounds good, and then BAM I'm starving. During the first few days of the cycle, there are times when I literally can't swallow, like the muscles just refuse to do it. I have to work the food or water around in my mouth and then can eventually force it down. It's weird and disconcerting. I can't drink anything carbonated or spicy because it hurts going down, and I often have indigestion or heartburn. And I burp a lot.

I've talked about the soreness in the mouth--last cycle I had a sore on my tongue despite the mouth washes I do three times a day, so last week I started taking L-Lysine which is supposed to help. Normally yesterday is when the sores would really start and so far I'm OK, although always in the second week there's this sort of pulling feel in my mouth that indicates they're imminent and I do have that. The rinse I do makes the feeling go away temporarily. I've gotten better at gargling. I used to always spazz out and gag. Now, I only do that about every third or fourth time...about when I start to get over-confident and think I no longer spazz and gag.

The skin on my hands sort of hurts, like it's chapped although it doesn't look like it. I don't know if this is from the chemo or all the extra hand washing, but I do use lotion every day. There is no visible redness or sores or anything. I noticed walking on the linoleum this morning that my feet felt the same way. However, I was told I wouldn't be able to tolerate scented shower gels or lotions, but so far I can still use them. For some reason, my fingernails have never looked better, so there's that.

My nose constantly drips and I sneeze a lot. My stools are either hard as a rock or super loose, or sometimes weirdly both at the same time. Never normal. I have hot flashes...I go from hot to cold and sometimes both at the once, don't ask me how. I sometimes have difficulty focusing my thoughts. I'm clumsier and less balanced than usual so I fumble things a lot.

Anyway, so that's some of the stuff I deal with. I would still say I'm getting off easy compared to some women, but it's not exactly a cake walk over here. Looking forward to getting better and better over the next few days, then I start on Taxol next Wednesday.

Sunday, August 30, 2015

Things not to say/what to say to a cancer patient

I'm pretty lucky in that I've insulated myself with great people who generally stay positive and lift me up as I go through this process. However, I know a lot of people don't know what to say when they hear someone has cancer and they end up saying the wrong thing unintentionally (I'm sure I've been guilty in the past as I have terminal foot-in-mouth disease). Some people are thoughtless and say pretty awful things, based on whatI've heard from other survivors. So I've come up with a list of dos and don'ts based on my perspective.

One thing to bear in mind is that being this ill is a very emotional process. Stress, fear of dying, worry about work, money, getting things done, taking care of children, etc. can be a huge weight when you're already feeling like crap. Plus, some drugs cause mood swings. Therefore, you can't use how you would react to something as a gauge, because the patient is in a different place you are--and from where they would normally be. Something that used to make them laugh might now make them cry. It's a mine field.

I think these apply pretty well to any major/chronic illness, so feel free to chime in with your additions if you've been on the receiving end of some of these!

Things not to say to a cancer/chronically ill/etc. patient:

  • All people feel tired/achy/depressed/etc. (true, but probably not on the scale of the person you're talking to, and it doesn't make them any less miserable.)
  • Be grateful you don't have X. (there is always someone worse off; that doesn't mean I'm not allowed to feel mad/sad/crummy about what I'm going through.)
  • You got this illness because...(you are not qualified to decide this and you're probably wrong. In some cases, it's downright cruel--like attributing it to karma, etc.)
  • You should have/shouldn't have...(you can't change the past)
  • You should/should not eat/do/etc... (please don't give advice you're not qualified to give. We have doctors who make their life's work treating our disease, and we've been living with it and probably doing our own research.)
  • Anything that makes their illness about you instead of them (how will I get by without you? etc)
  • My sister/friend/dad/etc. died from that (we know people die from it. We don't need the reminder. We need to stay positive.)
  • I'm going to come visit and won't take no for an answer! (patient may not be up for a visit)
  • Should you be eating/drinking that? (it's not your business, it's the patient's and their doctor's.)
  • You look terrible!
  • You don't look sick. (doesn't mean they don't feel sick, and seems like you're questioning how sick they are)
  • "Don't play the cancer card". People with cancer totally get to play the cancer card, it's one of the few perks of having cancer-you're a card carrying member.

Things to say to a cancer/chronically ill/etc. patient:
  • I'm sorry you're going through this.
  • hugs and other expressions of love and comfort
  • I'm going to X store. Can I bring you anything?
  • Can I cook a meal for you/clean your house/run an errand for you/give you this item of comfort? (offering something specific you don't mind doing is much easier to accept than a blanket offer, although blanket offers are nice, too--just make sure you mean it!)
  • Can I pray for you? (some people are offended by certain religions so it's safe to ask. Personally, I'm not offended by any sincere offer, regardless of the religion.)
  • Sending you positive, healing thoughts!
  • I believe in you.
  • You look beautiful in that scarf.

On the update front, I'm doing well today. Saturday is usually the day I feel achy and fluish from the neulasta, but this time it really wasn't too bad. Michael got me the softest, nicest sheepskin "sherpa throw" and it is so nice and comforting to cuddle with! I took Claritin for three days in a row, starting the day I got the shot, and I think that made a difference. I had a great visit from a dear friend who is also fighting cancer (a different kind), and our conversation was a fun back-and-forth mishmash of my updates, her updates, and commiseration. And love.

Yesterday, I realized the class I'd signed up for at Folsom Lake College started this past week and would be way more work than I'm up to. I dropped it...I'll revisit next year when it's more realistic. :/

Today I'm just tired, but now I know the fatigue is all I have left to deal with. It's always nice to get past Saturday, the last of the worst of it. I think this time was somehow the easiest of the four cycles I've had so far, which is weird but I'll be thankful! I don't know why I'm having an easier time than many others I've read about. I'll count it as a combination of luck, lots of rest, my amazing support system, and following all of the doctor's recommendations. I hope the four Taxol cycles go as well. 

Friday, August 28, 2015

Tired today

My bracelet, with a "love story" book charm for treatment #4
plus stoppers on the end to keep the charms from sliding off.
I'm probably going to have to remove spacers eventually.
Going to keep it pretty short today. I'm tired. I slept really well last night, which is good. My energy is very low and I don't feel up to doing much of anything, although I've done a little work so that's good. I'll probably feel this way for the next few days.

Reading more about surgery and the resulting recovery. Looks like I won't be allowed to lift my arms over my head until after I've recovered from reconstruction. That is a long, long time--next spring at least. Not being able to lift my arms will be annoying and inconvenient at home, but for dancing that is pretty devastating. I'm a little depressed about it. I think I'll be able to do some tango once I've recovered a bit since we don't usually do under-arm turns, but everything else is out. And how can I teach if I can't demonstrate turns? I know, when it's all over I'll get back to normal and I'll be happy to be alive. But for now it sucks. It's a blip in my life, but right now it's a long one.

Go out and do something fun for me this weekend! I'll be laying low...and playing on my new Nintendo 3DS I got to entertain myself.