Many ups, just a few tiny downs

Guess what cancer patient got on her bike for the first time since October?  Oh yea, that would be me.  I have found it Hard to exercise during cancer treatment, but tonight I felt ready to get back on the exercise wagon.  This is in contrast to my cancer friend Emily, who is super hard-core and has been exercising throughout her breast cancer treatment.  I don't know how she does it, but I guess I wasn't a huge exerciser to begin with.  I just really love to go on bike rides and to bike to work.  The only discomfort on tonight's ride came from the pesky nerve damage in my left arm and its corresponding pit, but the pain was totally ignorable after the first mile.  Maybe I'll try biking to work tomorrow.  We shall see if I can get up in time.  That's the hardest part about resuming biking to work:  allowing extra time in the morning for the healthier commute.  Once it becomes habit again it's not so hard to wake up earlier.      

It has been an awesome weekend with the family.  We went camping with the ridiculously amazing Aunt Jacque and had a ball.  The girls in particular had a great time.  Nature is the best plaything.  And if nature is drizzling, cousins and aunts are the best playthings.  The grand finale for this holiday weekend was grilling out with our awesome neighbors on Ian's hand-made brick patio.  I know, I need to post a picture of.  Suffice to say that Ian has skillz.

Despite all of these fantastic escapades, I do have a tiny bit of possible cancer-related news that I haven't shared with you.  It should be nothing, so don't you fret, but it is weird.  Last Tuesday I noticed a rash.  Anywhere else and it wouldn't have been a problem, but as I'm sure you've guessed by now it is on my right breast.  (Why do I specify a side?  I only have one.)  I put hydro-cortisone on it for three days, but it didn't resolve.  Reluctantly, I called Dr. Oncologist on Friday.  She of course wanted to see me, wrecking my first potential 40-hour work-week since October.  She didn't know what it was and sent me to a dermatologist.  Dr. Dermatologist didn't know what it was and so he took a sample (aka biopsy).  This was all on Friday.  I should have results on Tuesday or Wednesday.  In the meantime I have discontinued the hydro-cortisone because if the rash is caused by yeast, the hydro-cortisone could aggravate it.  The reason we went so far as to take a biopsy before trying more preliminary treatments is because inflammatory breast cancer (my former cancer) can manifest itself awfully similarly to the current rash.  But I just had an enormous biopsy of the right breast in April that came back clean, so I'm not terribly concerned.  Just itchy and annoyed.

Why on earth would I have yeast suddenly growing in that particular location?  Who knows.  I don't ask these types of questions anymore, I just make the phone calls to get the issue taken care of.

Also, talk about delayed reaction to the radiation!  Oh my goodness I am so red and uncomfortable, and have been for at least a week now.  And the blisters!  I have had this patch of blisters about the size of a cell phone brewing near my armpit for at least 10 days.  They refuse to surface and just sting sting sting.  Also, a new thing that just started about three days ago is a trio of blistery lacerations on my side, just behind my arm.  I'm guessing they are from my skin spitting.  Bummer!  I'm doing the same twice-per-day regimen of ointments that I've been doing all along, so I suppose that that's what has saved me from more severe reactions.  And yes, there is room for increased severity.  I'm counting myself lucky that I only have these relatively few blisters considering the vast area that was radiated.  A large area around my incision, for example, is healing very well and is scarcely pink anymore.  And besides, it's not like these discomforts have prevented me from doing anything that I want to do.  Thank you, chemotherapy, for making me so (en)durable.

Updated poke tally:

port  31

right arm 12

tummy  6

left arm  6

right breast 2++

left breast  1+

superior vena cava 1

T9 vertebral body 1

Audience participation

I have put a lot of brain power into what to do with this blog as my cancer treatment decreases in intensity.  Of course I plan to leave it on the world wide web, just in case it could help someone else who enters into my situation.  With them in mind, I plan to add some pages about me and about inflammatory breast cancer.  But this still doesn't address the very essence of blogging:  short and frequent blurbs by the author.  Right now the future of blurbing on Carnations is unclear, but I don't yet feel like throwing in the towel.  Maybe my posts will become less frequent, or less regarding cancer, but it seems that I will always find something to say.  Lately the scientific community is pestering scientists to create science blogs.  A science blog sounds like a tremendous amount of work, like writing a mini-review article every week, but perhaps with practice I could get into that.  We all know how much I love science.

  

That video could use a few more microbes, but I digress.  Until I evolve as a blogger, I have an idea to keep this cancer blog afloat.  My friend S. of Ames has a lovely biking blog on which she occasionally posts themed pieces by guests.  I'm thinking that my blog would greatly benefit from guest posts, too.  There is much more to cancer treatment than merely the experience of the patient (see my Lines and overlapping circles post for a visual of some of the various perspectives).  I'd like to hear about your experience, and I'd like to share your experience with others.

Because this blog has been entirely selfish thus far, let's keep it that way:  this assignment is aimed at those of you who know me in any way at any level (personally, electronically, acquaintance-ally, etc.), and I suggest the topic should be how you've been affected by my cancer (personally, spiritually, lifestyle-ally, etc.).  I don't mean this in an egotistical way, although it sure sounds that way.  My goal is indeed for the sake of the blog, because I think it's important to maintain continuity within the theme (Heather and breast cancer) at this juncture.  But I promise I'm not looking for "Heather rocks, cancer sucks."  That's been your mantra in the comments sections for seven months, and for that I am grateful.  I'm hoping and guessing that you have much more to say than that.  If there are readers who don't know me but who feel inspired to write, by all means do so, as I'd love to hear from you.  Let's face it, Zora Neale Hurston said it best when she said, "There is no agony like bearing an untold story inside you."         

The only rule is No Swearing, because kids could benefit from this, too.  The art form (i.e. poetry, essay, drawing, etc.) is totally up to you.  Regarding length, do what works for you, although perhaps 750 words is an appropriate maximum for this blog.  As Ms. Cotton would say, in a voice unexpectedly sultry for someone with glasses of a certain thickness and who teaches 10th graders, "A piece of writing should be like a skirt:  long enough to cover the subject but short enough to be interesting."

I urge you not to be intimidated by any lack of self-confidence in your own writing prowess.  I am willing to help you revise your piece, to find you a kind (and possibly handsome) editor, or to post it raw and unadulterated by me.  You decide.  Also, you decide your level of anonymity ("Written by a close friend", for example).     

Please submit your piece(s) to either my personal email or to my new public email, <30carnations@gmail.com>.  No deadline ever, although I'd appreciate if someone were to be inspired soon, to get the ball rolling.  Also, I might end the assignment if it's just not working for all of us.    

I am grateful that you're even considering participating.  This should be good.  

No more zaps!

I suppose I've kept you waiting long enough regarding the question, am I done with radiation?  The short answer is YES, and the reason for my delinquency is that I've been doing so very much LIVING that I haven't taken the time to post.  Yes, posting is not about having the time, but taking the time.

I was a bundle of nerves when I saw Dr. Radiation Oncologist on Tuesday, fully expecting him to scoff at my pinkness and sentence me to another week of radiation in order to achieve the ambiguous yet desired redness.  (My chest wall has survived remarkably well and looks like it has been to Puerto Vallarta rather than to Radiation Oncology...I wish).  Instead, he said, "you're done".  In my confusion I found myself nearly arguing for more radiation, saying things like, "but my skin was never very red!"  It turns out that my misconception laid in the purpose of the bonus radiation:  I thought that the bonus radiation doses were to stimulate redness, but the bonus radiation doses were merely a radiation boost regardless of redness.  Yes, redness was the goal for the original three weeks, and when that wasn't achieved the boosts were prescribed with no more redness in mind.  Said another way, the redness was his barometer for how effective the original radiation therapy was, and when the redness didn't cross his threshold, he prescribed the 2 days of boosts to ensure the efficacy of the radiation course, regardless of redness.  Confusing, I know, but hopefully this makes sense and anyway, I'm DONE!

Herceptin chemo yesterday was delightfully uneventful.  The biggest thing is that we scheduled my next PET scan for June 6th, and Dr. Oncologist will report the results to me on my June 8th herceptin day.  The purpose of this PET scan is to look for metastatic cancer.  The inflammatory breast cancer is super duper ultra gone, but my T9 vertebral body was suspicious on my last PET scan in March.  Pesky spine bone that doesn't hurt or anything!  The biopsy of said bone was inconclusive, revealing atypical cells but nothing specifically cancer or not cancer (read some of those early March posts if you want a more in-depth review).  So, PET scan in June.  I'm choosing not to worry about it but rather go on riding the happiness wave.  Nothing I can do about it anyway.  

Frank, your celebratory song suggestions were more than excellent, and I am grateful.  I chose, however, to take it as a challenge to come up with an even better one.  I submit to you and your fellow Carnations followers:

It's Oh So Quiet, by Bjork.  Not surprising, since we all know by now that I tend to go for the jazzy instrumentals.  And another selection (Tchakovsky's Chinese Dance, from The Nutcracker) that sounds like spring despite its perpetual winter holiday employment and includes a rather goofy dance (this one's for you, Hol):  

    

I haven't felt this good since October 20th, 2010

An excerpt from The Lovesong of J. Alfred Prufrock, by T. S. Eliot, that describes how I felt for seven months during cancer treatment:

And the afternoon, the evening, sleeps so peacefully!
Smoothed by long fingers,
Asleep … tired … or it malingers,
Stretched on the floor, here beside you and me.
Should I, after tea and cakes and ices,
Have the strength to force the moment to its crisis?
But though I have wept and fasted, wept and prayed,
Though I have seen my head [grown slightly bald] brought in upon a platter,
I am no prophet—and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid

= = = = =

A quotation from the journal I wrote on our family vacation to Hawaii in 2005 that describes how I've felt for the past three days, "Oh my goodness I have been so excited that I haven't been able to sleep for days!...I [am] seriously as happy as I get."

= = = = =

This is the best way I could think of to describe for you how great it is to have energy and be coherent.  This is how great I'm feeling IN SPITE OF the pending recovering (chest wall, throat, left arm).  This is...glorious.

Sounds like I'm going to have to redefine my happiness scale with a new maximum.  Might I suggest, "frighteningly happy"?

On the verge of greatness

The surgical follow-up appointment on Tuesday went well.  Dr. Surgeon said that everything is healing as it should, and she complimented my range of motion with my left arm.  The nerve pain under my left arm is still present but is no longer a constant bother.  I'm used to clothes and their constant rubbing, but the nerve still fires up if a kid grabs my arm.  My right breast is still very tender despite the needle-localized biopsy (link) taking place over a month ago.  I mentioned this ongoing soreness, in case it was a sign of trouble, but Dr. Surgeon just nodded and said that it will continue to be tender for quite some time.  Interesting. 

The best part of any surgical appointment is that Ian and I get a date in Iowa City.  That town has some fantastic restaurants, sporting some ultra-fantastic vegetarian fare for yours truly.  This time, however, Ian got to choose the dining spot because I didn’t think I could eat at any of my top choices, given the ongoing state of my throat.  So we went to a burger joint and I got a gigantic lettuce salad, sans croutons.  Then we went to Whitey’s ice cream parlor and I got my real meal:  a salted-carmel milkshake.  Oooo was it delicious.  My throat is much improved, now, so I'd better enjoy the frozen treats while I still have the excuse.    

Sitting here now it’s hard to believe that I’m already done with the four bonus radiation doses that had me all worked up on Monday.  (Yea, I was pretty depressed.  The Ms. Brightside post was as much an exercise for my morale as it was an information download to you.)  One of the radiation technicians thought that my chest looked redder on Thursday, so that’s good.  I can’t see the difference, but I think I can feel it.  I feel substantially sorer now than ever before; hopefully that’s a sign of success.  I’ll go in on Monday for Dr. Radiation Oncologist to assess again.  It’s unclear how long I’ll be on this guess-and-check schedule, or at what point he’ll give up the redness crusade.  As a result, I’ll still feel on the radiation hook until Monday.  I’m sure I can nonetheless manage to work in some mini-celebrating this weekend.  The girls and I had a dance party this morning and made our own music video to Tainted Love.  Awesome.  

I am really starting to feel great.  I have another week to be on antibiotics et al. for the sinus infection, and I have chemo next Wednesday, but then I’ll have three weeks with NO doctor’s appointments.  Wow.  I can’t even imagine it.

  

Between feeling good and having time on my hands, I should be able to get some things done in my life.  At home I feel about a week behind in my chores and a month behind in my correspondences.  I have fallen off the good-at-sending-packages-and-letters wagon, and I hope to get back on it.  The only thing I don’t feel like I failed at throughout this whole ordeal was spending quality time with my kids, which is as it should be.  On some days I remember wishing I could do more or participate differently, but I always made time for them.  There was always a puzzle to be put together. 

Work, on the other hand…ugh, I feel like I passed through a time warp from October 19^th to now, with random dollops of productivity in between.  Most of that productivity was really great, but remembering it and synthesizing it is a chore.  Thank goodness for lab notebooks!  If I can just get my butt in the science chair for an appreciable amount of time, I’ll discover the cohesion and generate some momentum.  Next week is the beginning of some greatness, I can feel it.            

Ms. Brightside

• Those cancer cells are going to be super dead by the time they get two more days, or four more doses, of both photon AND electron radiation.
• I'll get to celebrate finishing radiation a second time, which is super because I biffed the celebration the first time.
• Ian and I are going to Iowa City tomorrow for a surgical follow-up appointment, so I don't have to resume radiation tomorrow.
• It shouldn't be a problem to eat smoothies for an extra week or so because I'm not yet tired of them and they are quite good for me.  
• It's a good thing I'm on antibiotic, anti-fungal, and antihistamine drugs since my immune system will need help for a wee bit longer and one of my kids is coming down with something.  
• The sun has been out for several days, warming our garden and our spirits, and hopefully drying up the last of the winter cold viruses.
• My hair is so plentiful that I resumed using conditioner and I haven't worn a scarf or hat in three days.
• It's still short enough that when the wind blows my hair, I don't have to worry about it getting messed up.
• I have a ton of people helping me and supporting me, no matter how long it takes to beat this crap.        

Radiation in pictures

I am pleased to announce that I am finally feeling Monumentally better.  The sinuses, and with them the ridiculous fatigue, are at last under control.  Now I just have a sore and itchy trunk, a terribly sore throat, a fungal (thrush) infection in my mouth, and normal cancer-fighting fatigue.  Despite how it sounds, this is an entirely manageable scope of health problems.

On Monday I have to see Dr. Radiation Oncologist again already.  He will evaluate how red my skin is, and if it's not red enough, I might have to do more radiation.  Just the electrons, I think.  We followed an inflammatory breast cancer protocol for the photon radiation therapy, but there are no such protocols for electron therapy.  Dr. Radiation Oncologist says that the electron therapy is "an art form".  The goal is to get the skin good and red, which a sign that both ordinary and cancer things are dying under there, but to stop before the skin breaks down.  With twice per day radiation, the maximum redness will manifest approximately one week after the last dose.  Therefore we stopped the electron radiation at the same time as the photon radiation to give my skin time to worsen.  And it is indeed getting worse.  It's pink and splotchy, with a handful of pinhead pustules and streaks of new pigmentation.  But it's not RED.  So I'm appealing to my readers to meditate, pray, wish, or send positive thoughts that my left chest wall, from sternum to scapula, gets WORSE in the next two days.  I'd appreciate it.

In other news, did you know that you can ingest aloe vera gel?  My mother-in-law bought me a bottle, and I mix a few ounces with a glass of juice.  I still take liquid tylenol with codeine for my burned throat, but the aloe vera actually decreases the remaining pain.  This amazes me on many levels.  The other thing that decreases the pain is remembering that I have a burned throat before I put food in my mouth.  Sometimes I just want to casually eat something like a normal person, and it's not until my toes curl upon swallowing that I remember I'm not a normal person right now.  If I just stick with the smoothies I am so much happier.  I think my first healed-throat meal will be hard-shell taco night.  Mmmm, real food.

And last but not least, pictures!  My fantastic mother-in-law came with me to a radiation session and took some marvelous pictures.  I'll put a few below, but please click here to view the entire radiation photo essay. 

 I'm laying on the radiation table, and the machine is tilted to the proper angle.  You can see the lasers that get lined up with my tattoos to make sure that my body is in the right position for radiation.

This is a screen that the technicians see while I am getting radiated.  I don't know what everything is, but you can see one of my fabulous films of which I spoke in Looking great in films.

Crawling

I definitely crawled over the radiation finish line today.  The lovely radiation technicians made me a certificate, and a hospital volunteer offered to buy me a root beer, but I don't feel celebratory at all.  Maybe it hasn't sunk in yet, and maybe tomorrow I'll be excited about it when I don't have to start my day with some zaps.  But I just feel so crummy.  Believe me, I'll celebrate at some point, in true hbomb style.  It's just that this girl typing on her cancer blog does not feel like the hbomb.

The brief report is that my chest wall is like the worst sunburn ever, and it'll actually peak in awfulness one week from today.  When I touch it, I get nauseous.  My throat hurts, mostly from the radiation but I have a new bonus throat pain from a change in the sinus infection.  This bonus pain shoots up into my ears.  That makes me nauseous, too.  My sinuses are improving but are still a bit plugged up, and the drainage is gross.  Finally, I'm tired.  So tired.  I took a 4-hour nap today.

That's enough of that.

I have two bright sides to share with you.  First, I have discovered the delights that are homemade smoothies.  I just use fruit, a tiny bit of sorbet, and water.  I'm keeping it simple because I'm trying to use them to stay hydrated, since drinking water is so painful.  My favorite so far is 1 c. water, 3/4 c. frozen blueberries, and 1/4 c. mango sorbet.  I can always add yogurt or powdered milk if I need more calories, but right now hydration is my biggest challenge.

Bright side number two is my awesome family.  Apparently I sounded pitiful in my last blog post because my sister, dad, and step-mom all converged on my house last night to help out.  It was fantastic to have all of that in-person support.  Unfortunately, I had no idea what they could do for me.  I just needed to take my meds, wash my sinuses, and sleep.  But I suppose that them being here to lift my spirits was the best help of all.

Time to get back to the resting.