But you’re fine now, right?

I can’t tell you how many times I have had to answer this question. And it’s a lot harder than you’d think to answer it honestly.

It’s been one year since my breast cancer diagnosis & subsequent surgery. 8 months since I finished radiation treatments. 6 months since my total hysterectomy and starting on hormone inhibitors. People I see now ask about what I have been through, and then, I wince internally because I know it’s coming, they say, “But you’re fine now, right?”

Because “fine” is not really the word for it.

No one told me when I was diagnosed that it was unlikely I’d ever think of myself as “fine” again. But in this kind of a conversation, it’s hard to explain that to anyone. Most equate “done with active treatment” to “all clear” and that’s just not accurate. Most doctors don’t even tell you you’re “cancer free” these days, because it’s widely known they can’t say that with any real certainty.

I used to hear someone was a “cancer survivor” and think “Yay! Good for them!” But now? I now know there’s a silent for the time being at the end.

When you beat cancer, you can only consider it beaten for now.

So when I say “Yes, I’m fine,” the best way I can explain what I really mean is to ask you to imagine that I am walking alone down a frozen river. The ice beneath my feet is thick, and if I don’t think about it, I can pretend it’s solid ground. I know the water is under there, and if I concentrate, I can hear it rushing along, dark and potentially deadly, but mostly it’s in the background. I try not to focus on it, I try to forget it, I try to enjoy the pretty landscape of my life around me, I focus on the distant shore of the future and just keep walking.

But sometimes, I hear a cracking sound. I see something that wasn’t there a second ago. I feel something I shouldn’t feel. I immediately realize that the ground beneath me is, in fact, ice, and that the water beneath it can, in fact, kill me. Any pain or abnormality in my body makes that ice feel thin, fragile and treacherous.

For instance, last week I discovered that the ribs on my left (treated) side were incredibly painful to touch. Bone pain is a common side effect of Arimidex, I have some, but that’s more of an ache, like arthritic type pain in my fingers and ankles. Not feeling like someone has been whacking on my ribs with a broomstick as if I were a piñata.

So I’m poking at these tender, bruised feeling spots, trying to tell myself the ice is fine, that’s not a cracking noise, it’s not crumbling away under my feet, it’s just normal settling, there’s some logical reason for it. 

Then I hear on Sunday that my friend from high school, also a mother of two young children, who is the same age as me and who started her breast cancer journey one year earlier than I did, who started out with a diagnosis fairly similar to mine, has died after 10 months of fighting metastatic growths in her lungs and bones.

And, with that, I begin to feel like my feet are punching through the flimsy crust of melting, cracking ice. I can hear and see and feel the cold, black, churning water ready to suck me in, and I’m looking at the distant shore of my future with my children and my husband standing on it, and feeling absolute clawing terror that I am not going to make it over there.

This triggers several days of random panic attacks and crying jags, rounds of doctor visits and scheduled diagnostic tests. While going through the motions of being “fine”.

Followed by some waiting and lots of worrying.

Followed by hopefully good news.

After which I will carefully start walking across that ice again, but with one ear cocked, listening and feeling for any signs of danger.

And that is what my new version of “fine” looks like.

One year out…or one year in

Hello, hello. I appreciate everyone who has checked on me, and I apologize for my long absence.

So…

One year ago, I answered the phone & heard some of the most devastating words I’d ever heard in my life. It wasn’t “You have cancer”, that came about 45 minutes later. It was “Can you bring someone with you to your appointment today?”

They don’t call you and ask you to bring someone to a biopsy result to pat you on the head and tell you you’re fine.

The drive to the doctor’s office after that phone call is really one of my worst memories. I was screaming hysterically, just absolutely terrified down to my bones.

So now, a year later, how do I feel?

Well, it depends. Most of the time, I can pretend I’m fine. I just don’t think about it. I’m not in active treatment, aside from the lingering effects of lymphedema that will always need treatment. So I can just kind of head in the sand pretend everything is okay.

But underneath that surface level, there’s a layer of constant fear. Every pain, dizzy spell, headache, or issue cause me to run through the checklist of “Is this normal, is this aging, is this Arimidex, is this cancer?” and there’s no way to definitely know the answer. I used to think they could just do a PET scan and see if there’s cancer anywhere, but that’s not the case. They only do them in the presence of multiple symptoms because it’s a lot of radiation, there are frequently false positives, and at any rate, it can’t detect very small tumors, so by the time it’s actually visible you are pretty far down the road.

Because my radiation oncologist put such a scare on me about not doing chemo after having a positive lymph node, I would say my greatest fear is not that it’s going to come back, but that it was never gone. If cancerous cells escaped from the tumor that was in my lymph node and traveled around my body, by the time they show up somewhere, it’s going to be stage IV with mets and I will have serious problems.

Of course, that could happen even if I had done the chemo.

I think that’s the biggest thing people don’t understand about having cancer. It’s never over. You’re never 100% for sure proof positive “cancer free”. No Evidence of Disease is the best they can give you. “We don’t see anything” is not the same as “Nothing’s there“.

My goals have gotten smaller. Live 15 more years. See my kids graduate. See them get married. See them happy, well-adjusted adults. Anything else is a bonus.

There’s no finish line for cancer. There’s no end zone. You never get to say “Phew, thank goodness I’m finished with that cancer nonsense!” I see ladies every day in their second or third round of recurrence & treatment and it makes my heart seize up when I think of how I will feel if the mammogram shows something suspicious on Tuesday. Or next year. Or 5 years from now.

If it doesn’t, I have a six-month reprieve, assuming they don’t want to do an MRI about these headaches or another bone scan or check my lungs…

If it does, then the biopsy, then the wait…then another phone call asking if I can bring someone with me to the appointment.

 

 

 

It’s not over ’til it’s…still not over

My hysterectomy went smoothly, aside from the first, failed IV attempt being quite painful. Overall, it was a bearable surgery, the pain was awful for the first 24 hours but after that it was manageable and gone after 4 days.

So I had a round of follow-up visits with everyone, and a 6 month mammogram, and thought I’d be done with all medical stuff for 6 months, so I could relax, stop feeling like a permanent patient, exercise and attempt to get back into shape (a shape that is not “pasty blob”).

Then I felt a thick, hard cord in my armpit. I knew immediately what it was, not thanks to my doctors, none of whom had warned me about lymphedema or given me anything to do to prevent it, but thanks to my Facebook support group. No one on my medical team even told me to avoid blood draws or blood pressure readings on that side, I asked because I had read it in my group. I was told “yes, probably, just to be safe” but overall the risk of lymphedema was not really raised as a concern by anyone.

Even after I told my surgeon about the cording (it had gone down by the time I saw him) and the pain, he agreed to refer to me to a specialist, but said it was probably just a matter of her showing me some stretches and maybe a little massage and I could get on with my life.

Not so much.

I was on a waiting list to see the specialist, as she is the only one in my area (and a 30 minute drive away, at that). I saw her Monday and she was unequivocal about the fact that I have lymphedema, I am going to have it forever, I need intensive several times a week treatment, to learn home massage techniques and be dedicated about doing them, get a pump that I have to wear an hour a day, wear special compression bandages in the short term and compression garments in the long term.

I am so very frustrated and overwhelmed. I can’t exercise for now, I have to always be wary of any kind of trauma to my upper left quadrant. This means I may never be able to get the breast lift I have always wanted (especially now that surgery left things a bit lopsided) and will have to spend the rest of my life being aware of my disorder and working around it.

I think no one (including me) thought this would happen with the removal of only two lymph nodes, which is why no one really raised the topic. The therapist says it’s likely radiation disrupted the function of the remaining lymph glands and that’s why I am experiencing this. I pointed out some swollen lines in my treated breast to 2 doctors during the radiation process that I was worried about, both said it was just from radiation or surgery, but I was right, it was cording from lymphedema.

I feel old and broken, in addition to being overweight and scarred up, I feel deeply unattractive.  I was told the pain will improve as I receive treatment, but for the time being it aches all the time. I really thought I was done for a while and could exhale.

But…cancer is the gift that keeps on giving!

She’s got herself a universe gone quickly

 

So I’d been having surprisingly few side effects from the Tamoxifen after 30 days of (mostly) daily use. Hot flashes minimal, occasional joint or bone pain but it didn’t last.

However I was starting to get concerned this weekend. I had been having some pain in my lumpectomy area since Thursday. It went away mostly with Motrin but it was still bad enough to be concerning. It was more of a constant ache, it wasn’t the shooting nerve pain that I have come to expect.

Then on Sunday I noticed that I had a painful spot on my ribs right in the same area that had been hurting last summer, the pain that led me to the ultrasound that got me diagnosed with cancer. By Monday I noticed another painful spot on a rib directly under my breast. Also my left arm was hurting and my fingers were tingling in the afternoon.

Additionally, I’ve started to really worry about the headaches. I have always been prone to headaches, but I am having one 4-5 days a week. They’re not migraine level incapacitating, I’m able to continue working and functioning but it’s hard and exhausting.

The three things they tell you to look out for as a breast cancer patient are shortness of breath, headaches and bone pain. So…I can breathe fine, but I have got the other two in spades at the moment. Also my vision is really getting bad, as a person who has always had very sharp eyes.

I was wondering whether to call the oncologist or the surgeon with these concerns, when I got a reminder about my 1 month radiation oncologist follow up today at 10:30. Perfect, I thought, I can get him to check me out.

I dropped off the kids at school and was headed home to shower and work a little before my appointment when suddenly I heard a loud bang, my car shuddered, my shoulder started to sting, and I couldn’t see out of my driver’s side windows anymore. I pulled over to the side, completely baffled as to what was going on.

I had been half t-boned, half-sideswiped by a county owned F350 coming out of the waste processing plant  I’d been passing. He’d been nosing out the driveway through a line of cars stopped at a light headed the other way, and a “helpful” driver had stopped and waved him on through…directly into my vehicle.

My side airbags deployed, which is why my shoulder was burning and why I couldn’t see out my windows. I was pretty freaked out and hysterical, but the driver’s manager and supervisor came over from the plant and were extremely kind, the driver admitted complete fault, and the county is covering all repairs and a rental car for me. Aside from a silver dollar size spot my shoulder being raw and a seatbelt burn, I am fine. Thank God the kids were already in school, the back door on that side took the worst of the impact, where my 7 year old had been sitting 10 minutes before.

Mr Bunny left work to pick me up and I blew off work for the morning, opting instead to watch The Bachelor with him. We always watch The Bachelor together, we have for years. That and beauty pageants, we have such a great time roasting the contestants on both.

Anyhow, I kept my doctor appointment and when I was going over my intake forms with the wonderful Miss Jamie, she asked me who I was seeing for all the anxiety, fear, sadness, worries (because I checked off all those on the list of “what’s going on with you?” items) I said “No one.” and she said “Is it just because of the cancer, all this worry and sadness?” and I don’t know why but something about that question just broke a dam and I started to cry and cry. Bless her heart, she just swept across the room and just grabbed me in her arms and held me and prayed for me and it was so kind and wonderful.

They declared me fine in terms of the car accident, but are concerned about the bone pain and the headaches.The doctor thought I’d had a brain MRI back in the fall and was surprised I hadn’t. So I am going tomorrow morning for the brain MRI, followed by a radioactive bone scan like the one I had in September. I am hoping nothing is on them, but truthfully I am scared scared scared.

I think I feel a little bit like I might have got off too easy, like I didn’t do enough, like I shouldn’t have skipped chemo with a positive lymph node, and now I’m frightened it’s too late.

So y’all please pray for me that these scans come back clear.

Last Sunday my daughter wanted to come to “big church” with me instead of going to children’s church. And we were standing there singing a hymn I remember singing in church with my mom when I was 12. It doesn’t feel that long ago! But now here I am, my older child is almost that age, and my mom has been gone for 19 years. My kids are still so young, but they’re not little kids any more, they’re growing up and it’s just suddenly started going by so fast, and feel like I can’t keep it, I can’t slow it down.

Up until August 28th 2017, my life was slowly and calmly click-clacking up the hill of the roller coaster, and then I heard “You have cancer” and the car started to fly down the terrifying drop other side and everything around me is just light streaking past that I can’t hold on to.

Stop dreaming of the quiet life, ’cause it’s the one we’ll never know

One thing that has really started to get under my skin since diagnosis is how breast cancer is used as a handy plot device to eliminate wives and mothers from novels. I read a lot and I promise you in the 6 months since I was diagnosed I have read 10 books where someone died of breast cancer and only one (Mount! by the estimable Jilly Cooper, as mentioned in a prior post) where a woman was diagnosed, had a lumpectomy & radiation, then went on living.

A month ago, I started reading Fairy Tale by Danielle Steel. I used to love her books in high school, and her older books are like comfort food to me. Her new books are pretty terrible (and I am almost convinced at this point that she isn’t writing them, rather a computer has been fed all her previous books and just spits out novels using the Steel Algorithm), but I pick them up at the library sometimes because they’re mindless entertainment.

Except right in the first chapter, there’s this.

(Spoilers)

steel2

No one follows up a lumpectomy with ONE YEAR of radiation and chemo. A full YEAR? That’s insane. This is Danielle Steel, it’s not like she can’t pay someone $10 an hour to Google “cancer treatment” and get a reasonable idea of what happens.

The character has a recurrence a few pages (but 4 years later) & dies peacefully with a smile on her face in her sleep, wrapped her husband’s arms while she’s in the midst of chemo.

3 weeks later, I am reading yet another book by this same author and look what’s on page 4?

steel2

It just sticks in my craw how so many authors are like “Hmm…I need to kill off this lady, hey…think pink! Breast cancer!”

I’ve been drinking 4 liters of awful tasting gunk tonight in preparation for my colonoscopy tomorrow. It’s been fairly miserable. I have been on a liquid diet for two days and I’m hungry and have a headache.

Tamoxifen is starting to have some side effects, the exhaustion gets pretty bad at times, and I have been getting occasional bone/joint pain that is pretty miserable. I’m glad I only have to take it for two months, but from what I understand the side effects of AI’s are just as bad, if not worse for some people.

I really want to be done with all these procedures and taking my AI’s and trying to settle into my new normal. But at the same time, it’ll be somewhat scary to suddenly not have doctors looking at me and checking on me all the time. I won’t be taking any action, I’ll just be waiting and hoping to God I didn’t make a mistake by not doing chemo, hoping there’s not stray cancer cells floating around my system, lurking and growing in places that no one has looked yet.
Y’all….I try really hard not to miss my mom. It’s futile, it hurts, and doesn’t have any benefit. But sometimes, especially dealing with having cancer, and being so scared that my kids are going to be left pining for me the way I did her, it just reduces me to hysterics. Like the kind of crying where you have to start thinking about other things or get caught up in a tv show or other people’s Facebook drama, because otherwise you feel like you’d never stop.

She’d be killing this fight. She would totally be my strength and my faith for me. I don’t feel like I have either, still.

I want my mommy.

I want to be ok.

I want Mr Bunny and I to be happy together for another 15 years.

I want to be here for my kids.

I want to be here for my grandkids.

I want to get old.

I want to stop crying.

I want to not have cancer.

 

 

And watch the only way out disappear

I am done done done with radiation! Finished! 31 down and none to go.

 

rads

All told, my experience was amazing. No long waits, no burned skin, negligible exhaustion, hopefully no long term effects. I am so happy with my clinic and their staff, they absolutely treated me like a VIP every step of the way.

My next move is to go write some 5 star reviews on Facebook and Yelp.

Anyhow, with radiation finished. I was meant to go straight to the hysterectomy table next week. I decided I. Just. Can’t. I needed a minute to not be incapacitated in some way.

I called to see if they could delay the surgery for a week and the soonest it could be moved to was 22 February. Fair enough, I thought. A month off from medical treatment.

Then I ended up in the ER after 2 days of abdominal pain. I was worried it was appendicitis. It wasn’t, but results were inconclusive, so I’m having the long-postponed colonoscopy on the 31st.

I was very frustrated when they determined I wasn’t in any imminent danger but would not let me out of the hospital. The surgeon told me, after a CAT scan around 8 am, that he was pretty sure I didn’t have a blockage or appendicitis but that he’d like to do a repeat blood test the next morning to be sure. So I figured I’d go to the outpatient clinic or a lab and get the blood draw done. Hours later, after trying to find out why I was still there, they told me I wasn’t going to be able to leave, they expected me to sit there all day and all night in order to have a “just to be on the safe side” blood test in the morning.

Even though I had two more doctors tell me there was no reason for me to be alarmed or stay in the hospital, and one actually say I’d be better off at home away from possible flu germs etc… they wouldn’t let me leave. My only option was to sign myself out “against medical advice”, which I said I was happy to do until they told me that would mean insurance would not pay for my visit.

So I was basically held hostage in the hospital by healthcare costs. I cried a lot, I even tried to get the insurance company on the phone (since I assumed they didn’t want to pay the costs for me to stay overnight for no reason aside from CYA) but they aren’t there on Sundays.

I finally was moved out of the ER to a room in the regular hospital around 6 pm and the man who wheeled me up there told me  I could request a case manager to try to bust me out. She came, listened to me cry, went off to get help. The doctor who had wanted me to go home for my own safety came in, surprised I was still at the hospital, but she didn’t have the authority to spring me. The case manager came back and said I couldn’t leave.

The screen with my orders on it said I wasn’t allowed to eat either and it had been about 24 hours at that point. So I pressed the call button to see if I was seriously expected to starve too, and 45 minutes later a new doctor came in and said he thought I’d been sent home from the ER already by the doctors down there, what was I doing in the hospital?

The thing is, this is going to make me very very hesitant to visit the ER again for anything that’s not obviously broken or needs stitches.

What’s more, I got a letter from my insurance company a week later denying admission to the hospital. So if they had succeeded in keeping me overnight, insurance wouldn’t have paid for it.

Ladies and gentlemen, let’s hear it for American healthcare!

I saw my oncologist Friday, he gave me a gold star for weathering radiation so well. He had hoped I’d get hysterectomized earlier, but understood that I just needed a dang minute to breathe. He did go ahead and put me on Tamoxifen for the time being, just to be safe. He explained the difference between how it works (actually puts a little shield on the estrogen receptors in your body’s cells) and how the aromatase inhibitors work (suppress the stray estrogen floating around the body after menopause has shut down the major producers). I’ve heard such horror stories about both, but so far I haven’t had any side effects from Tamoxifen except feeling more tired, which seems to be a side effect of everything lately.

CT scan in the morning. w00p.

With treatment sort of winding down (aside from, you know, major surgery & a new medication coming next month) you would think I’d be feeling happier and more positive. But I’m not. I may be more scared now that I’m not doing anything. I started crying hysterically while washing the dishes today, just wondering what on earth Mr. Bunny would do, how he would manage to work and raise the kids on his own, if I wasn’t here. The terror of not being here to see the kids into adulthood has put such a fright in me. I don’t even pray for no recurrence, or a long life. I just pray for 15 years. Cancer has shrunk my formerly infinite dreams into tiny little manageable packets that I can fit in my mental pockets, only one or two at a time.

 

 

 

 

 

 

Blackness held its breath beside me & burned the air till it was gone

So it turns out when you have 3 client blogs to write paid posts for each week, on top of 41 hours weekly of other work, on top of 2 kids out of school for Christmas, on top of Mr Bunny being off work for 3 weeks, on top of Christmas, on top of radiation and the resultant fatigue…it’s very hard to keep up with one’s personal blog!

Radiation keeps on radiating. I actually have my last “whole area” treatment on Tuesday the 2nd. Then we are going on vacation! A whole week with no cancer treatments. Wow.

When we get back, I will have the targeted “boosts”, 6 of them, and finish up on the 18th. Just in time for my full hysterectomy on the 24th. Yowza. I sure know how to kick off a year.

Cancer humor: Speaking of radiation, my support group was discussing how one tends to lose one’s armpit hair on the radiated side, and one woman wondered if men being treated for prostate cancer also lose hair in the treated area. Another replied “I would assume so. I wonder what the male version of a Brazilian is? Brazil nuts?” Haw haw haw. 

My radiation oncologist continues to pat himself and his team on the back for my continued lack of skin issues. I do have some  burning and tenderness, but visually the untreated side looks very close in skin tone to the treated side. He said either he is the best, or I should be teaching a class in how to get through radiation because my skin is faring so well.

In the interest of that, here’s my radiation skin care regimen:

Morning:* I apply Miaderm Radiation Relief (http://www.miaderm.com/our-products.html), which I get free samples of from my clinic every week. It’s light, absorbs quickly and doesn’t get on my clothes. It has calendula, hyaluronate (hyaluronic acid), and aloe vera in it.

After treatment: Before I even get dressed, as soon as they let me off the table, I apply Big Kahuna Body Butter from Coconut Hut Beauty (https://www.coconuthutbeauty.com/product_detail.php…) to the entire area, armpit to sternum, colllarbone to ribcage. It has shea and cocoa butter along with aloe, it’s super thick and rich and really soothing. You can add delicious custom scents (I put it under both arms to help deal with the whole no deodorant issue too) and buy sampler packs, the small tubs that come in the packs are just right for carrying in your purse.

Night time: I douse the treated area in Kukui Nut oil (http://www.alohatherapy.net/shop/kukui-nut-oil/) which is apparently used regularly for people suffering radiation burns in Hawaii. It feels so nice and letting it soak in overnight helps my skin heal.

Deodorant, I have had no luck with the natural kind or regular non-antiperspirant deodorants, they all make my pits feel sticky. I use custom scented coconut oil from Coconut Hut (https://www.coconuthutbeauty.com/product_detail.php…) and then pat my armpits with a tied off stocking foot filled with cornstarch as a kind of improv powder puff.

*This is with afternoon appointments, with a morning appointment one would not want to put lotion on first. I was told I shouldn’t apply anything for 4 hours ahead of my appointment.

So the fatigue has been cumulative as I expected it would be. It really comes and goes in waves. It’s not the kind of tired sleep can solve, I still have insomnia issues, I struggle to fall asleep & struggle to wake up in the morning, but I can wake up in the night and have anxiety attacks just fine.

The two big problems I have been having are headaches and nausea. Supposedly it’s not radiation related but I have a lot of anecdotal evidence from my support group that says otherwise. Starting the week of Christmas I had a headache for several hours on 7 out of 10 days. And I get nauseated probably 60% of the time when I eat.

Honestly, I try not to look at the big picture. I feel like I am trudging down one of those long empty stretches of road you see Forrest Gump running on, just looking at the white lines pass by under my feet and being glad when I pass each one. Every once in a while I look up and see the road of CANCER, stretching out black and endless in front of me leading to who knows what. I look at it and know that I will constantly be wondering and afraid of what may be lurking around the next bend, and then I look right back down at my feet and just focus on each step. I can’t face down that long road without feeling the bottom fall out of my stomach. So I just don’t look at it.

I’ve always been pretty optimistic. And I’ve always been pretty lucky. Things have generally worked out in my favor in life, so I’ve always tended to believe they will be keep doing so.

But right now?

It. Is. Hard.

So I am just hoping that at least the 2018 part of the road will be easier.

 

 

 

 

 

‘Cause I got a burning fire in the bed of my soul

So, while everyone is shivering in the grip of winter, I have a sunburn!

In my esophagus.

I noticed on Friday that I found myself kind of “gulping” every few times I swallowed. Even when I would take small bites or sips and concentrate on swallowing normally, I would frequently feel like I had to swallow hard, the way you do when you have a lump in your throat from crying or fear. It doesn’t hurt, it’s just an effort that I didn’t normally have to make. That gulping action subsequently caused me to have indigestion from the air in my stomach. It went on all weekend, so I figured I should ask the doctor about it after radiation on Monday. Could have just been coincidence, but anything different is worth mentioning.

My regular radiation oncologist was out of the office, so I saw the visiting doctor. After explaining what I was experiencing, he examined my radiation model on the computer and showed me where the radiation that is treating my lymph areas is brushing up against my throat right at the collarbone level. He said it’s likely that spot is irritated in a sunburn like way, and probably causing the discomfort. I took a sip of my tea (they have a Keurig in the lobby and I have some yummy Earl Grey with sugar and milk every day) and found that yes, the tightness I am feeling that I have to gulp in order to push food and drink past is right there at my collarbone. Maybe I need to start drinking the aloe & coconut oil, since it’s working so well on the outside.

So that’s fun.

My skin really is doing great. I’m not having any burning or itching, my regimen of Miaderm, Big Kahuna body butter from CoconutHutBeauty.com, coconut oil & kukui nut oil seems to be working.

Overall the fatigue is not too bad. Most of the time.

On Friday night though, the kids had a pajama party at church and my intent was to have a romantic home date night with Mr Bunny. I picked up Thai food on my way home, we ate dinner, and then I passed out on the couch while we were watching Dunkirk. Woke up in time to go fetch the kids home again.

I am trying to just enjoy Christmas and deal with radiation while trying not to let the cancer filter ruin everything. It can be hard.

“Someone likened cancer to a pink elephant, and the pink elephant initially is right there in front of your face, you know… and then as you get better, the pink elephant maybe goes to another room. And then as you get much better, the pink elephant goes down the street, but it’s always there and you always know it’s there. And, I think that, as you approach appointments, the pink elephant [from] down the street, you know, comes in the living room again.”

Right now I am trying to at least keep the elephant in another room & stop it sitting its big ugly butt on my Christmas tree.

 

On a bed of spider web, I think of how to change myself

So, let’s talk about my armpits. I have been more aware of them in the last few weeks than ever before in my life.

I’m not a very sweaty sort of person, I really do the nice southern girl thing of lightly glowing. Not to say I don’t smell, I just don’t get very damp while going about it. Still, I’ve been wearing anti-perspirant since I was 13, when spray on Soft n’ Dri was all the rage.

The jury is out, but the general consensus is that one should not wear anti-perspirant while undergoing radiation treatment, you want something without the aluminum in it. Fine, I think, I don’t really need the anti-perspirant aspect of it anyhow. I’ll just buy this Tom’s natural deodorant kind and go on with my day.

Except oh my gosh, as soon as I put it on I was like “Ugh, sticky!”. I then went in to fold laundry and for the next hour every time I moved my arm I felt my skin unstick itself from itself. It was very unpleasant. I ended up washing it off.

Then I bought some Jason brand and had the same experience. Attempted that crystal sort, which was uncomfortable to put on and then still sticky. I even tried some of Mr Bunny’s Old Spice! No luck. Sticky, sticky, sticky.

I went to my support group for advice and lots of people suggested coconut oil. Lucky for me, I have 2 bottles of yummy custom-scented coconut oil from coconuthutbeauty.com! Not sticky, and smells great. Several people mentioned adding cornstarch to absorb any wetness, but I couldn’t figure out how one would apply that without making a big mess. The solution? Put the cornstarch in the toe of a pair of tights of stockings, cut it off around the ankle area and knot it. Tah-dah, improv powder puff.

Armpit problem, sorted!

Aside from the itching, which has only bothered me one night. It woke me up a couple times, eventually I had to get up and put some aloe from the refrigerator on it.

Radiation continues without real incident. My skin is doing great, it feels a little tender to the touch but visibly looks the same on the treated and untreated side, so I have no complaints. I’ve seen a lot of scary radiation burn pictures in my support group, but so far my skin is being cooperative. My amazing, awesome clinic has promised me they will not let it get out of control like that if I start having issues

The tiredness is starting to hit me though, it comes in waves and is less like bedtime tired than like vertigo + heaviness in my limbs. It doesn’t feel like the kind of tired that sleep would solve, it just makes it hard for me to do anything aside from sit still when it’s hitting me. Even my eyes feel like they can’t focus properly.  Then it passes and I’m ok.

On the topic of sitting still…I used to always volunteer in high school art class to pose for drawings, because I found it an interesting challenge. I am not a restless person by any means, but I have never been one to just sit and do nothing with my body and my brain at the same time. If I’m sitting still, I’m reading or watching a movie or doing something that requires mental engagement. So when I  needed to really just sit completely motionless and truly do nothing, I discovered I was fairly good at it. I would just sink into my body, zone out my brain and just be. In college I had the opportunity to actually make a little money at it, I got better at total immobility, even in slightly uncomfortable poses, and I enjoyed doing it. It wasn’t something I’d do at home, like meditating or anything, but when I had a reason to, it was oddly satisfying.

Who knew talent at posing for drawing classes would actually be a great skill to have during cancer treatment? It’s very much the same, I have to lay there in an awkward position, day after day, and be as still as I can, even trying not to breathe too hard, while I wait for the radiation to do its thing. I watch the patterns on the inside of my eyelids and listen to the music and just tune my brain to static.

The other day, some fairly innocuous smooth jazz song ended on the sound system and “Back in the Saddle” by Gene Autry came on. That’s the only time I almost moved during treatment because I was struggling not to laugh.

11 treatments down, 20 to go.