Thursday, January 28, 2016

My radiation ritual

My hair 13 weeks post final chemo
I've come to realize that I like rituals. I always sit in the same place at the places I frequent, Michael and I have certain things we say to each other at certain times, etc. Having the rituals during chemo really helped me get through it--we'd take a pic in the morning with the race bibs he made me, get breakfast on the way there, always had our bag of snacks and entertainment packed, lunch on the way home, and then cut off the loop from my daisy chain. Oh, and I got a new charm for my bracelet each time. It helped to make things feel a little normal, I think, and gave me a mini celebration to keep me positive.

So when I was struggling with my feelings last week, someone suggested I do a ritual for each radiation treatment. I agreed it was a good idea, and several of you gave me some good thoughts on what to do. I combined a couple of them with an idea I had found to make a keepsake of the chemo loops.

I went to Michael's (the craft store) and got a cute square jar with a lid. I shredded the chemo loops and put them in. Each day when I get home from radiation, I get to eat a Dove chocolate and put the wrapper in the jar. If I like the sentiment on the inside of the wrapper, I fold it inside out so it can easily be read. Otherwise, I've folded them into different shapes or into balls. I also got some little origami papers, and after each treatment I write one thing I'm grateful for on the white side of the paper, then fold it into a little Japanese lantern (don't be impressed. My origami skills are...not) and put that in the jar, too. So I have this jar of memories and positive thoughts and blessings. I like it!

Today was treatment #6. I get tired after every single one, and most days I don't even feel like getting on the computer or doing much of anything once I get home. I'm already turning pink and feeling tender. I ended up seeing all three of my doctors yesterday for follow ups, and they were all surprised. Apparently I'm "lucky" in this regard and will not have an easy time of radiation. Joy. /sarcasm

The funny thing was that the radiation oncologist said he wished he could publish me because I line up on the table perfectly every time and all of my xrays and whatnot always come out right. I did not realize this was so difficult....I knew I was good at lying down, but not this good! (ha) Anyway, he said I turned pink faster than he expected and that we might end up having to take a break at some point to let me heal before they continue if it gets too bad too fast. This is just sounding better and better! I hope it doesn't get dragged out too long. I want it over with, and I want to heal before we leave on our cruise May 1!

During my follow up with the medical oncologist, he told me my stiff joints are related to chemo-induced menopause. Apparently, joints like estrogen, and when there's a sudden deficit, they stiffen up. This is not an issue with normal menopause, because the body slowly adjusts over a period of years. Mine should improve with time when my body adjusts, but there's no way to know if I'll stay in menopause or pop back into my normal cycle.

The surgeon I ended up with when my original one had to go on leave is hilarious. During my appointment with him, he said, "Well, your path report was clear so I basically did nothing." I said, "You disfigured me, so there's that. I'd like to thank you for saving my life, but...well, you didn't. So, thanks a lot." It was pretty funny. Sometimes you just have to laugh at this stuff.

I don't need to see either the MO or the surgeon again until June or July, and I don't need another mammogram until then, either. So, I'll have a nice little break from cancer crap after radiation is finally over. Looking forward to that!

Sunday, January 24, 2016

Laughter is the best medicine!

Thank you all for your encouragement yesterday. Being surrounded by so much love is definitely a help! After whining to several friends, getting a really good night's sleep, and playing games all morning--err, day (oh is it already after 3:00??) with Michael and the kids and laughing so much I was crying and my abs hurt, I'm feeling much better. I might dip back into the doldrums when I go back to treatment tomorrow, but I know y'all will help me through it.

And really, I know this is temporary, and it'll only last a few weeks. Someone suggested I do something to count down the treatments like I did with chemo. I wasn't going to because A. there are so damned many and B. I didn't expect to have such a hard time with it. But, I think it's a great idea and maybe it'll help keep me positive. Now, I need some ideas! The chain of loops was awesome but there will be too many. What else can I do? I will be shredding the chemo loops to keep in decorative jars. Maybe something that can also go in the jars? Thinking caps, people!

And you know what? Despite all this crap, I am the happiest I've ever been. I'm with a great guy who treats me well and takes care of me, we live with his fun kids and laugh every day, and I'm financially secure. I have just one more bump in the road, and it's a sucky one, but in the grand scheme of things it's not so bad. Warrior on!

Saturday, January 23, 2016

Struggling with my attitude

I'm struggling a bit with my attitude about radiation. I'm feeling pissy about having to go, and I'm tired...and it's just getting started. Driving downtown and dealing with traffic and parking, especially in the rain, is stressful. It's been a long and emotional rollercoaster of a road, and I want to be at the end. My joints ache, especially my hips/lower back, and I feel like an 80-year-old woman whenever I stand up, sit down, or go up/down stairs. Both days after treatment I got pretty tired, so I don't think this is going to be the breeze I hoped it would.

With the stress and emotional crap, I'm having a hard time managing my temper. I don't know how people manage it when they have longer treatment protocols than I did. Or whose cancer keeps coming back, or who have chronic illnesses. For those of you who manage to keep up a positive attitude through it all, you're amazing.

In reading my support group forums, I found out that both of the above issues are pretty common. As for the attitude, by this time the number of appointments and decisions and things have slowed down, giving the patient a chance to process what has happened. Suddenly we're not so focused on fighting and survival, so anger at the injustice, realization of the fear, etc., have had a chance to seep in. I hear stories of the cancer coming back and I can't help wondering if that will happen to me. As for the joints, the other women who are experiencing this also had Taxol. So I suspect that's the cause. I hope it gets better with time. Exercise does seem to loosen me up a little. Oh, and my vision got worse, for which I can probably thank chemo.

The second day of treatment was shorter than the first, since they didn't have to do xrays. Part of my treatment regimen is to have a "bolus," which is a heavy sheet of fabric with little metal discs all over it, placed over the affected area during part of the treatment. I'll get this every other day, and the purpose is to bring the radiation closer to the surface.

No real sunburn yet, since it's early. I do seem to have some freckling already, though. I'm happy to have started in the middle of the week so I'll have two weeks (beginning and end) where I don't have to go five days a week.

I didn't exercise the last two days because I didn't feel up to it, although I did go grocery shopping so I was at least on my feet and moving around. I need to figure out how to get up and out earlier in the day so I can get some exercise before treatment, because afterwards I think I'll just be too tired. I don't know how much I'll be able to do during the next few weeks, but I'll do what I can.

That's it for today. Hug your loved ones, especially if they've been through something like this. We could use it.

Thursday, January 21, 2016

First radiation treatment

I'm pretty tired, so I'll make this quick for once. I went to my first radiation treatment today. It was a little weird, because I went alone--the first time I've gone to an appointment alone since this started. Michael and I talked it over and agreed that makes the most sense, as he would miss too much work to take me every day and it's too much to expect anyone else to do. Plus, I'm feeling well enough that there's no physical reason I can't drive myself, and the appointments are quick and no one can come in with me so it's silly to have my emotional support person go just to sit in a separate waiting area.

So after I put on my gown, I was taken into the treatment room. They got me on the table with my mold under my shoulders/arms/head and adjusted me until I was in the right position. Only my right side was taken out of the gown, so it was reasonably modest and I didn't get cold.

I had two male techs and one female, who was on lunch when I got there so I only met her at the very end. They said this would be the longest treatment because they had to get some films. They will take xrays every week moving forward. I was on the table for about 20 minutes or so, although I couldn't see a clock to really time it. There was a monitor on the ceiling with pretty pictures to look at, but I had to turn my head away from the side being treated so it was hard to really look at them. There was music playing, so I could listen to that.

One of the techs drew on me, then started the machine and I lay there for a while as it rotated around me, shone green lights on me, and made a variety of beeps and whirs. The tech came back in, drew some more, and left. More of the machine moving around and whirring and beeping, and then the woman came in to tell me I was done and could put my arms down. That's it! I wasn't even entirely sure when the filming ended and the treatment began, although perhaps it was when he drew on me the second time. I didn't feel anything from the treatment.

It was my day to see the doctor, although he had been called to the OR so I had a replacement. She felt me up, told me my skin was dry and I could use whatever lotion I had on hand for now, and sent me on my way. It was pretty quick. I am feeling pretty sleepy, but that might be because I didn't get much sleep last night.

One down, 32 to go!

Wednesday, January 20, 2016

My, how time flies!

Hair growth, 12 weeks post final chemo.
It's looking sandy blonde.
I was diagnosed on June 23rd of 2015, and I remember when I found out I had four months of chemo ahead of me, I felt like it might as well be a year. Sixteen weeks seemed like such a long, long time. Now, it's already been 12 weeks since my last chemo. It's crazy to think that much time has passed! It's been seven weeks since surgery (or will be tomorrow). If it weren't for the butch hair and the missing body part, I could almost convince myself it was all a bad dream.

I have to say, cancer has definitely taught me patience. Even though I want it to all be over with, I feel a little more patient than I did back in June. What's six weeks compared to four months? That attitude has even bled into my non-cancer life: I don't drive so fast on the freeway, because what's an extra minute or two? I don't mind waiting a few days until I can do something fun, because what's a couple days? That doesn't apply to the whole weight loss thing, though. That I want to happen RIGHT NOW. I'm even being pretty patient with myself about fitness, as long as I do a little more at each workout and continue to improve.

Radiation starts tomorrow. Six weeks, then I'm done with treatment. I'll still have reconstruction, but that's not happening until next year so I might as well not even think about it. That gives me a year to get a bunch of this weight off so I have a hot body to go with the new rack. :) I believe I'll be getting mammograms every four months for a while, then six, and I'm sure every little twinge or mole will send me into the "is it cancer??" mode. But at least I know I won this round, and if I have to do it again I will. But I sure hope not.

It's date night. I'm going to go have some fun with my honey!

Monday, January 18, 2016

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!

Tuesday, January 5, 2016

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!