Radiation Simulation

My hair, 11 weeks after the
last chemo treatment

Last Thursday I had my radiation simulation in preparation for my upcoming therapy. The short version of this is it's an appointment where they set up you and the machine so your therapy is precisely targeted to the right areas, with as little involvement of the unaffected organs, etc., as possible. I'll give the full blow-by-blow below.

I start therapy this coming Thursday, and I will get 33 treatments--28 to the whole breast and 5 boosters to the tumor bed. The only real side effects this time will be a sunburn that slowly worsens until it blisters and fatigue--but hopefully the fatigue will be nothing like chemo (should be much easier based on reports from sister warriors).

I have to say, I'm a little bummed to still have to face this. I've had weeks of not having cancer and starting to feel normal, and it's daunting to face yet another treatment and its side effects--especially since I'm in remission. I know it's necessary to prevent recurrence, and there was never a doubt in my mind I need to do it, but I don't wanna. So there.

I am still recovering from everything I've been through so far. My hair is growing back at a satisfying rate, on my head as well as body hair. While I'm still frustratingly far from even a normal fitness level (much less where I was at before getting sick), I'm able to exercise a bit and you may have seen my dailymile reports on facebook. I'm doing light weights, walk/running on the treadmill, and taking short rides on the bike I got for Christmas (my first real attempt at this as an adult). I'm pleased with how I'm doing considering all I've been through, but it's hard to be patient knowing it will take a long time to get back to where I was. Especially since radiation will slow me down again, although I plan to do as much as I can to keep trying to improve.

I'm back to dancing a little, although my range of motion is still limited so I have to be careful what I do and with whom I dance. I'm able to do just a little more each time I go out, which is gratifying, and although I'm exhausted when I get home, it's totally worth it. One more piece of normalcy returning.

Details of my radiation simulation:

(bearing in mind that every place is different, so other people's experiences may vary)

When I arrived at the radiation center, they showed me to a dressing room where I was to remove anything I was wearing on top and put on a gown with the opening to the back. There was a locker to put my clothes, purse, etc., and a wrist thingy for the key. There was a women-only waiting area, where I was pleased to see there was a jigsaw puzzle to work on rather than the typical fashion magazines that hold no interest for me.

They then took me into a room with a CT machine and had me lie on the table. My gown was undone, so my whole torso was exposed although I didn't really get cold. They covered lefty when they could, which was nice for some sense of modesty. Some people, through this process, feel very exposed and emotionally uncomfortable. For me, I figure so many people have seen and/or felt up my breasts by this time, what's the difference? There were three female techs working on me, and they were all very sweet. Had I felt nervous or unsure, I think they would have put me right at ease. I'm a pragmatic sort of girl and just wanted to get it over with.

They had me put my arms over my head with my hands behind my head and my face turned away from my affected breast (err...lack of breast). There was a sort of bag under my shoulders that would become a mold to ensure I was in the exact same position each time I went in, and they worked together to quickly get it in place and set. Although my arms were not really comfortable, it wasn't long before they at least felt supported. I do not have good range of motion in my shoulders even not considering the surgery, but it wasn't an issue.

I ended up lying in that position for a total of about 40 minutes, which was pretty uncomfortable and my hands fell asleep. However, I shouldn't have to do that for so long again as future appointments will be 10-15 minutes. There was a pretty forest scene on the ceiling lights, so I had something to look at, plus it took away the harshness of the lights.

Anyway, after they got me all set, they did a quick CT scan purely for mapping purposes, not diagnostic. They left me there while they consulted in the other room amongst themselves and the radiation oncologist. They made marks on my skin with sharpies, which was a little weird just because I couldn't really feel it. They consulted some more. Finally, they came in and gave me my three tattoos, which are permanent. There is a dot near my collar bone, one near my breast bone, and one on my side below my armpit. The first two I barely felt a little prick, since I have almost no sensation there, but the third one was nowhere near the surgical site (so therefore full sensation), and it felt kind of like a bee sting. However, the discomfort quickly went away.

Finally, I was allowed to lower my arms and put my gown back on. They led me to an exam room to talk with the RO. He looked at my lack-of-boob and pronounced it highly acceptable, checked my hands and arms for strength and range of motion, and told me the nurse would go over skin care and answer any questions about the procedure. I got dressed, met with the nurse, and that was it. All told, it was about an hour and a half. I did not get to see the radiation machine, but I figure I'll see enough of it over the coming weeks. I'll go in every day, Monday through Friday, and meet with the RO on Thursdays.

That's all I can think of. Feel free to message me or post a comment if you have questions!

My surgery story

Following is an accounting of my unilateral modified radical mastectomy (in other words, removal of my right breast and some lymph nodes but not the chest wall). I thought I'd share the whole experience from beginning to end for those who are curious or who will face this in the future and want to know what to expect. I should have done this a few weeks ago when it was all fresh, so hopefully I remember everything! Feel free to ask questions.

In the pre-op area with my warming gown

My surgery was scheduled for December 3 at 11:30, and I was to get there two hours early to check in. I was not allowed to eat or drink anything after midnight the night before. Michael was with me, and we sat in the waiting room for just a few minutes before we were called back to the pre-op area. At my hospital, there is a large room with a bunch of curtained-off rooms with beds (walls on the side, curtain in front) so you have a semi-private place to get ready.

After they did all the medical check-in stuff and repetitive questions, including what kind of procedure I was having, I had to get cleaned up and changed. Despite the fact that I'd showered and brushed me teeth at home, they sent me off to the bathroom to brush my teeth again and use mouthwash. Then I had a bunch of wipes I had to use to clean every inch of my body, and there was even a diagram to do it in a certain order, using each wipe only on a specific area. I believe this was all to reduce chance of infection. Then they had me put on a gown that was insulated and had a place where a hose connected it to a device on the wall that pumped warm air into the gown to keep me nice and toasty warm. They also gave me socks with rubber things on the bottom for traction.

There may have been some drugs involved
in this one.

Throughout my wait, various people came in, asked me what kind of procedure I was having (I seriously must have repeated it about 20 times. Better than having the wrong body part removed--I started adding "my right, not yours!" at one point), took vitals, etc. My main nurse tried to start my IV in my hand, but it was horribly painful and wouldn't draw so she called another nurse who was supposedly better at it. I normally have fantastic veins that are easy to stick and draw instantly, but it took this other nurse two more tries--one on the inside of my forearm and another on my hand to get it to work. The final one was still uncomfortable but the pain finally subsided. She said that chemo often does that to you--weakens your veins or something. Hopefully they eventually return to their former glory, because that seriously sucked.

The surgeon and anesthesiologist both came by to see if I had any questions and ask me what procedure I was having, and then finally one of the OR nurses came and that meant it was time to go. At this point it was almost 1:00 because the OR was behind schedule. Michael and I said a final tearful goodbye, and I was wheeled away to the OR. Once we got there, I was asked to state one final time which procedure I was having and they were all duly impressed at how easily I rattled off "modified radical mastectomy of my right breast--my right not yours!"

They had me climb from the rolly bed to the operating table and got me settled. Someone put an oxygen mask on my face and hooked up the IV. I remember talking to the various people working around me, and then the next thing I knew I was on a rolling bed and the nurse was telling me, "You're all done, Jennifer. you did great." I don't know how long the procedure was, but it was somewhere around 1.5 to 2 hours.

I was quite groggy and foggy, and I struggled for a few minutes to wake up. There was pain, although not excruciating, and the nurse was right there putting something in my IV to help. She kept upping the dose until I said I couldn't feel anything. Michael was by my side within a couple minutes. They kept me there in recovery for maybe a half hour or 45 minutes, then wheeled me up to my room.

The pain was really not bad. After that first dose of pain meds, which I found out later only lasted an hour, I only asked for a dose a couple more times so most of the time I actually was on my own. After I got home, I generally only took something for pain maybe once a day, usually at night. After a few days I didn't need it every day.

That first night, I could not keep anything down. I was on a clear liquid diet (anesthesia often causes nausea), which included juice, chicken broth, and jello, but I threw up every time I tried to ingest anything. Finally, they said the IV pain med might be contributing to that and suggested I try going without or switch to oral. I went without and slowly sipped water and chicken broth throughout the night. I kept it down and was able to go on a full liquid diet in the morning--this included cereal, so I felt like I was finally getting something of substance. I hadn't eaten in well over 24 hours at this point.

I had two drains coming out of my side, long stretchy tubes leading to bulbs that collected blood and lymph fluid that was draining into the surgery site. The tubes had to be milked and the bulbs emptied every 12 hours or so and the volume noted. The nurse did it for us but showed Michael how so he could do it after we got home. It was actually pretty easy to do, although if you looked too closely it was a little gross. Michael was a trooper about it. The bulbs had fabric tabs so they could be pinned to my gown, but Sutter sent me home with a pouch on a belt which was pretty convenient although I was super tired of wearing it by the time the drains came out.

Anyway, the doctor came in the morning and pulled my bandage off. That was probably the most painful thing of this whole experience. I actually screamed a little. However, he said everything looked good and was pleased with how the procedure went. He'd only taken a small sliver of my pectoral muscle. However, there was no way to know if he'd gotten all the cancerous material, how many lymph nodes were taken, etc. until the pathology report came back a week later.

My hair today, 10 weeks after final chemo.
It's finally showing up in pictures!
Also, eyebrows!

As far as the surgeon was concerned, I was good to go and could be released, but I was not allowed to go home until I could walk to the bathroom without being dizzy (which I accomplished pretty quickly, actually) and eat solid food (which happened at lunch time). As is typical in hospitals, it took quite a while to get all the paperwork and whatnot done so I could go. The nurse navigator (Mary Pare at Sutter is just awesome) came by and gave me the pouch, a little pillow for resting my arm on or using in the car for the seat belt, and a camisole with falsies in it so I could look normal if needed until I'm able to wear a proper bra and prosthetic. (For the record, I've worn it exactly once at this point as I'm generally too tender to bear it, or my comfort bras, for long. I just go out braless and don't worry about the fact that I'm obviously missing a boob.) She also made sure we had all our questions answered about taking care of the drains and other care concerns, told me to eat extra protein, etc. Then I was finally released and wheeled out to the car so I could go home.

At home, we propped me up on a wedge of pillows and I slept on my back for two weeks until the drains came out. For showers, we pinned the drains to a lanyard around my neck and wrapped my upper torso in saran wrap because nothing could get wet. We also did a couple of sponge baths with "adult wipes"--kind of like baby wipes, but I guess scented for adults. I had a post-op appointment one week after surgery, where I got the path results (I posted about it, but if you missed it only 4 lymph nodes were removed and there were no remaining cancer cells--I had a complete response to the chemo).

At that appointment, he took out one drain. The other drain still had too much production and had to wait until I had less then 30ML for two straight days, so it came out a week later. They also removed the staples that first appointment and put on a bunch of steri-strips along the whole incision. None of this was painful, although there was minor, momentary discomfort. I took a pain pill before I went in for the first appointment but forgot the second time and it was no big deal. With the second drain out, I was able to sleep on my left side (still can't quite sleep on my right although it's getting a little more comfortable to lie on it) and take real showers. I was able to take the steri-strips off after the second appointment. It was an uncomfortable thing to do, so I'd do just a few at a time in the shower until they were all gone.

I started doing physical therapy exercises (I didn't get an actual therapist, just a sheet of exercises to do) the day after the drains came out. At this point, I can slowly raise my arm pretty far above my head. I need to get a little more range of motion back before radiation starts, but I'm almost there. My energy is returning quickly. I only have pain if I do too much with my right arm...which is most days because I'm not that smart.

That's everything I can think of!

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!

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.

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.

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!

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.