The Days After Chemo

For me, the days after chemotherapy were more like a disgusting horror film: lots of pain, tears and pea soup shooting across the room from a spinning head…

Perhaps I hyperbolize slightly.  My head didn’t spin, at least not visible to the outside world though some vertigo occurred, but I also discovered just why the heavy duty medications are necessary after dumping an insane amount of toxins into the bloodstream.  Just remember: chemo equals toxins and toxins equal insanely sick for the next week!

The night I had chemo I was fine.  I ate without any issue and found myself just a little groggy (and desperate to pee every five minutes from the diuretic in my system.)  I wasn’t incredibly surprised, most reading and the few people I had spoken to admitted that the first day or so might be tolerable.  It would just get worse before better.

Seriously…it got way worse.

My parents were kind enough to run by and pick up some lender anti-emetic from a friend of mine as well as a little something that I thought I had wanted to eat: a blizzard from Dairy Queen.  While both the pill and half the ice cream went down well, my stomach did not stop doing flips at all.  I just continued to feel so sick that my abdomen actually ached.  Malika arrived midday with some lunch for the two of us and some distractions (read as: movies).  We ate and watched TV; all the while the pain and sickness worsened.  I was popping four milligram tablets of Zofran the second I was allowed (only to learn on Monday I was supposed to be taking eight milligram tablets every eight hours.)  The Zofran wasn’t doing anything at all.  I still felt incredibly sick, like I was on the verge of vomiting every second I was awake.  Despite my best efforts, I couldn’t nap either.  It was just a mess.

It wasn’t long before the nausea won.  Malika was a trooper (and gets the friend of the week award for sure!) as she wiped down my face, rubbed my back and talked soothingly to me while I spilled the contents of my stomach into a bucket.  After that, I gave up food entirely for the day, sipping slowly on water and nibbling on saltines (which were the only solid things I could keep down.)  When Milo arrived home, he and Malika swapped jobs, but he lucked out.  I had learned my lesson and refused to do more than drink water and suck on ice pops.  Food was definitely not my friend.

I hoped that by Sunday things would be different.  The chemo, supposedly, lasts in the body for about forty-eight hours.  Saturday, in my mind, should have been the worst and then I should taper down to normal…right?  Wrong!  Sunday was equally as bad, if not worse.  Dr. Brooks had mentioned to be prepared to be constipated (oh joy!), so Milo and I had stocked up on a few things to help keep my gut moving.  Unfortunately, we didn’t realize we should start with those medications before chemo.  After, is a tad too late.  Despite the fact I still wasn’t keeping food down and at times bringing back up water, my bowels weren’t moving at all either.  I’ll spare the most intimate details (my husband is a saint though!), I finally became functional again.  Milo hoped that would relieve the pressure on my stomach and let me eat.  I tried again, with no success, to keep down some soup.  I was starting to think this was never going away!

On Monday, I was so weak and crying so much that I couldn’t take it anymore.  My parents picked me up to babysit me at their place while Milo worked for the day.  On the ride to the house, I called Dr. Brooks.  It would take him a few hours, but he finally called back to see how bad I was.  I admitted the last solid food that stayed down had been on Friday and that since it was pretty much saltines and clear liquids for the last three days.  This amassed to a six and a half pound loss from Friday.  His exact words: “Well this is disappointing.”  He prescribed ativan (which is normally an anti-anxiety) and said to use it but try to monitor how sedate I became (the answer: very.)  Dr. Brooks warned that if this didn’t work I would need to come in for fluids.  Worst case scenario: I might end up in the hospital if nothing stayed down.

Ativan is my hero!  This might very well be my favorite post chemo drug in the universe right now.  Not only did I keep down meals (small portions but food is food!), but it knocks me out and I get a decent rest for a while too.  They should hand this out to the opposing political parties so they can sleep through the presidential years they don’t agree with, i.e. I’d totally have used this to sleep through Bush Jr.’s presidency.

The downside of the ativan is that I definitely can’t work since I am exhausted all the time and I tend to be a tad bit more weepy.  This also makes things a little messy.  People can be amazing comforts, but they can’t be there every time the water works start.  In fact, some people apply more pressure to the situation than is needed.  Like my mother, she tells me I have to live for her because it would kill her if I died.  Or my father saying I promised I would bury him so I can’t die before him.  No pressure, right?  This isn’t hard enough without that kind of love.  I already feel like my sickness is affecting so many lives.  After treatments I am so sick I need someone to take care of me or at least be around since I’m so weak and nauseous.  People have lives.  Milo has work and school; I can tell my parents love to have me around, but they’d like to have their home back too.  My friends have lives and can’t play nurse to the cancer patient all the time either.  I don’t think people realize I’m starting to feel lonely and as if I am a burden.  Everything I was before now has been stripped away to reveal the major new role in my life: cancer patient.  It’s heartbreaking; I was so much more before sick girl.  I was a nurse, a lover, a child, a wife, a sister, a friend.  I planned parties for birthdays and took people out when they were depressed.  Now I’m just sick…it’s like Janine stopped existing a little to make way for the big evil Darth Tumor!

First Day of Chemo…

And more bad news.

Dr. Brooks returned this week and was ready to see me.  I had decided to go to the appointment alone and have Milo meet me when they started the chemo so he could go to work; one of us has to have some semblance of normalcy when it comes to working.  Dr. Brooks immediately asked where Milo was and it made me wish he hadn’t needed to work.  The office visit can be very lonely sometimes, especially when there is news.

Dr. Brooks opened my PET scans on his computer to help me visualize what he was about to say.  Unfortunately, it wasn’t what I was hoping.  While my pancreas wasn’t the starting place for my tumor (yay!), the cancer is most definitely a stage four and has pretty much infiltrated other parts of my body.  There are lymph nodes in my pelvic, abdominal and thoracic regions all lit up like little red Christmas lights on the PET scan, which means the cancer is there.  On top of that, two smaller nodules (small tumors) have been located on my lungs (so that’s why I’ve been coughing like crazy).  Here I was hoping for a simple “We were right, it’s all in that right upper quadrant, let’s fight it!” and instead I received a “Well, this little bastard really wants a battle, doesn’t it?”  Dr. Brooks still seemed optimistic, though, and then handed me the CD-rom with my scan to keep.  I told him I wanted it so I could imagine those red spots going away.  The scan did reveal something that is good in a roundabout way.  The tumor in my liver has a large area of necrotic tumor inside it, which is what it gets for growing so large that it can no longer sustain itself.  Ha!

We discussed chemo and starting it immediately.  He said we’d be using cisplatin and gemzar to treat my cancer.  Cisplatin is the “go to drug” for cancers of the biliary tract.  It can possibly make me lose my hair (though it can be as minimal as shaving my legs less often), will almost certainly make me nauseous, mess with my taste buds, and needs to be given with a lot of fluid and a diuretic because it can be toxic to the kidneys (joy!).  Gemzar is milder and has been used to improve quality of life.  It will mostly make me feel like I have the flu and need more sleep.  Symptoms, however, shouldn’t last more than a few days.  I’ll receive doses of my chemo for two Fridays and then have a week off; each treatment will last four hours.  We’ll redo scans in a month or so to see if the tumor is shrinking at all and redo our plan then. Surgery is definitely not an option for my cancer as a whole since it is so extensive, though we may use it to remove the mass from my liver down the line.  Either way, it will have to wait.

He asked me if I had anything I was concerned about and I brought up my dizziness, which has continued almost every night this week.  Dr. Brooks assured me he didn’t believe this was a new tumor in my brain (thanks Doc!) but simply vertigo.  I was offered a referral to an ENT, which I declined for now, and placed me on meclizine.  If that doesn’t control my spells, he said, then he’d send me to the ENT or do a scan to be certain I get better.

As far as my diet is concerned, Dr. Brooks mentioned that while he likes the thought of my cutting back on carbs and sweets, he didn’t necessarily think following a diet was the best idea either.  Chemo is dosed based on weight and from last week alone his scale shows me down seven pounds.  I did wear pants last week, but even accounting for a clothing difference I lost at least four.  My cancer is not considered controlled if I drop weight that quickly, according to the doctor, and if I show up ten pounds under where I was it could mean missing a chemo dose because it would be too high.  With my taste likely to change, he told me that I’d lose my appetite and he really needed me to eat things.  His ruling: don’t gain a bunch of weight either but definitely eat things I enjoy when I find my symptoms are the worst.  Do my best to cut back on carbs and sugar, but don’t stress if I can’t right now.  I liked this advice (and not only because it means I can eat chocolate!)

Before chemo could start, he wanted me to meet with Bonnie, the financial counselor.  She gave me the best news of the day: my chemo was covered one hundred percent!  All I have to pay is my office visit co-pay.  When she showed me the cost of chemo treatments the insurance would be billed for, I nearly fell off the chair.  No wonder people without insurance end up in so much debt that they file for bankruptcy.

By time I finished with Bonnie and settled into my chair for chemo, Milo had arrived from work.  Neither of us watched as they accessed my port-a-cath; we didn’t use the numbing spray this time.  It hurt, but not as badly as I expected.  Carla, my nurse for the day, was amazing about explaining everything she was doing.  Not just when she accessed the port either.  When she hung the bag of IV fluids, she educated us on chemo and all the fun things we hadn’t thought of like having sex together (definitely use a condom to protect him!), how chemo kills off the cells that reproduce quickly so dental work/cleanings are off limits, constipation becomes a huge problem so treat it and what I could use to treat other side effects.  Did you know that dexamethasone, ativan and Benadryl can all be used to treat nausea?!  I didn’t and it just fascinated me to no end.  She told me if I ever wanted to read any of their texts they had, she would happily give me them during my treatments.  I might have to take her up on that someday.

The treatment itself wasn’t really that bad, lots of sitting with cold fluids running into my port, so I was thankful they provided blankets.  Even before the diuretic, I was up to the bathroom at least three times from all the fluid.  Once the diuretic kicked in, I was almost sorry that I even sat back down.  I swear I was in the bathroom every twenty minutes!  It was driving me crazy.  Milo was great about helping me to the bathroom and tucking me back in when I returned.  It was nice to have him there, but I felt so bad that he was stuck sitting around being bored.  It wasn’t exactly an entertaining situation.

After chemo, we went to CVS to drop off the scripts for my new medications.  Once again, my prescription drug plan proves that insurance can really suck.  They wouldn’t fill my anti-nausea medication unless it had a prior authorization, which we didn’t know.  By time I called the doctor to get them to put in the authorization, CVS Caremark was closed for the weekend!  I was told to either pay for it myself and they would reimburse part of it (which of course could take up to a month) or suffer.  Thankfully, Carla had taught me about Benadryl so I can get through the weekend.  Here’s hoping it works as well as Zofran!

And now: An open letter to my cancer

Dear Cancer,

I see you there, growing and moving into places you don’t belong.  Go to hell!  I’m not going to let you take over my body.  It is my body and you are done feeding off it.  I won’t allow you to win, so I hope you came prepared for a hell of a war.  No, on second thought, I hope you didn’t.  I hope you believed this would be some kind of cake walk so that when I open my can of whoopass, you are unprepared.  I will take you, my enemy, and you won’t even see it coming.  You’re going to lose; I have far too much to live for.

What to Expect: PET Scan

My insurance company notified me this weekend via snail mail that the Powers That Be had changed their minds about the PET scan.  The decision had been “reviewed” and it was thought that perhaps I did need the scan after all and that they might even cover it.  Fortunately for me, when I called to enquire as to what they would cover cost wise, the nice woman on the phone replied it would be completely covered.  Excellent!

Before I knew it, I was scheduled for the scan.  The appointment would be the last of the day, starting at three-thirty pm.  I was told not to eat for six hours before (that would be nine-thirty am) but to continue drinking plenty of water all day (plain water, nothing sugary allowed.)  As it was a work day, I figured it wouldn’t be too difficult to keep my mind off food.  I could drink water when I became hungry and maybe chew gum (which I did and later learned I shouldn’t have, even if it was sugarless.)  As luck would have it, today happened to be a special event at work and food was everywhere!  By noon, I was starving; I drank so much water that I was in the bathroom every twenty minutes.  I had resorted to watching gross online videos (which I actually find cool) just to try and keep my mind off eating and perhaps decrease my appetite.  Unfortunately, all I could think about was the peanut butter and jelly sandwich I had waiting for me after the test.

At three, I booked it from work to the office in hopes they might fit me in early.  They couldn’t and I was treated with an episode of Ellen where she gave the entire audience a serving of sweet potato fries *insert Homer Simpson drooling noise here*.  It was like the office was even taunting me with edible goodness that I would be deprived of for at least another hour!  Cruel.

When they finally took me in the back room, they confirmed the last time I ate or drank and I admitted to my gum.  This is where I learned that my jaw might now “light up” more on the scan because it had been worked.  The tech explained that no strenuous activity, even walking the mall, should be done within twenty-four hours because it skews the test.  Here’s hoping the gum didn’t mess with it too badly.

He had me remove my bra and then sit in a refrigerator –er cold room—where he inserted an IV to push the radioactive sugar stuff into my veins.  He also tested my blood sugar to be sure I wasn’t secretly diabetic.  The stuff felt ice cold as it went in, which makes sense since it had just been removed from a refrigerator.  The IV was taken out immediately after the drug was pushed.  Then the fun began.  I was tucked in with a blanket, the light was shut off and I was told to sit quietly and motionlessly for forty-five minutes.  Wait…what?!  I don’t sit that still watching a movie; how am I supposed to do that without anything?  The point is to allow the drug to settle where the most activity is without influencing it with muscle movements that would pull in more of the sugary stuff.  I comprehended this, but it was a long time to sit still…until I fell asleep.  Napping is good and highly recommended.

After the forty-five minutes, I was taken to the CT room.  This is where the test is like a CT or MRI (except less noisy than an MRI).  I was told to lay with my hands above my head (not sure why) and to remain as still as possible while breathing normally.  For the next twenty-five minutes, the bed I was on moved into and out of the machine in slow segments.  Keeping my hands above my head became a challenge as I started to get a little sore.  I definitely looked forward to it being over.  Twenty-five minutes is a long time in a CT machine.  They don’t provide music (at least mine didn’t) like they did for the MRI, so I was alone with my thoughts.  The tube was slightly larger than the MRI, but I had been expecting an open donut shape like I had seen in pictures.  I was very disappointed to be in the tube again; thankfully still not claustrophobic.  Being alone with my own head that long wasn’t good either though.  I would think about the oddest things (the speaker had a flower pattern on it) and sometimes delve into the negative thoughts.  I had to remind myself to take slow breaths and focus on positive things: like the sandwich in my bag.

As soon as he finished, I bee lined for the exit.  Expect to be famished if your test is that late in the day.  It took the PB&J and then a bag of microwave popcorn before I stopped feeling like I could eat a cow.  If you luck out and get a morning appointment, consider me jealous.  I would have done anything for one of those.

Dwelling in the Negative

I don’t want to die.

I wasn’t going to write tonight as there weren’t many things to report.  On Monday we had headed across town to Dr. H’s only to discover that the injection wasn’t the right formula (it was the pediatric one).  The correct injection arrived this morning and cost an extra $200.  Thanks to Discover Card, I was able to get the injection.  Of course, Dr. H was kind enough not to charge us an extra office visit for the mix up, but I was too busy focusing on the fact I hate needles to express the full range of my gratitude.  Again, I know there is a world of irony in a nurse hating needles; I love giving them and happen to be quite good at it.  Receiving, however, not really a thrill and this particular shot was given into the muscle of my butt, which surprised me since that isn’t the recommended place to give IM shots anymore (a little nursing factoid for you: preferred locations are the arm and the thigh depending on how much fluid needs to be injected.)

With that and my bout of dizziness from dehydration being the biggest news items, you can understand why I figured I’d skip tonight and maybe tack these things onto a post later this week.  Unfortunately, while watching my favorite guilty pleasure (Glee) I started crying again.  I burst into tears pretty easily lately.  For instance, listening to my wedding song (Feels Like Home To Me) made me into a blubbering idiot for about 45 minutes the other day.  When she says that she’s found a love she never expected, I thought of my handsome and wonderful husband.  I don’t want to leave him.  I don’t want him to have to suffer if things don’t work out for the best.  How would he manage?

Whenever I go down that negative route, I do my best to pull myself back out of it.  I truly believe in self-fulfilling prophecies.  If you allow the negative in, there is a good chance that is what will happen.  I don’t want to be one of the statistics; I want to be one of the survivors.  I want to be the story people tell to motivate others into staying positive when they are diagnosed with cancer.  Like my Great Aunt Elsie, who told doctors she didn’t care if they didn’t believe she’d walk again after her cancer; she was going to walk! She did, with the use of crutches, and she didn’t let anyone convince her otherwise.

It’s not as if I am pessimistic about the outcome all the time.  I catch myself saying, “I hope our kids have his smile,” and “When we have children, we are so getting those.”  I think about what our children will look like, what books we’ll read to them, and how I’ll help them with their homework…but those dreams sometimes knock me back into the reality of the situation.

I have cancer and I don’t want to die.

Sometimes, I don’t feel like I can voice that to anyone.  They tell me I won’t die when I do bring it up.  Everyone reminds me I am only 30 and I have no other major medical issues that will complicate my treatment.  I stand a chance at fighting this successfully, especially given the killer team of physicians I have.  Yet, I still need an outlet for these feelings and emotions when they bubble over.  Much like I wouldn’t want Milo to be strong all the time, I can’t expect to be tough constantly either.  I’m going to have doubts and fears as we head into the treatment phase.  Heck, I’ve had them since the diagnosis. I’m allowed that.

Fact remains: I don’t want to die and I’m so scared that this is the one fight in my life I won’t win.  It’s a terrible feeling to have dwelling inside and I’m uncertain as to how to fight it.  Suggestions are welcome, but I have a feeling wallowing is part of the process.  I welcome the progression, so long as I come out victorious.

Intimacy After Diagnosis

For me, sex has never been just about the physical pleasure. It’s always been an emotional connection to the man I am with, in this case my amazing husband.  For the last few months, our love making has been directed at expanding our family.  Last weekend, when he first brought up making love I was honestly freaked out.  First, it wasn’t about trying for a baby anymore (not that being with my husband was ever just about that.)  Then, there was the soreness from the port-a-cath –how is it possible it is still so damn tender after a week?– and the occasional pain in my right upper quadrant.  I wasn’t certain how physically prepared I would be for a coupling, even a gentle one.

Tonight, I decided I needed to fill the void that had been created since the downward spiral that had become our life since the first bad set of results.  The problem became clear almost instantly: we were awkward.  It was like our first time all over again, or as Sarah McLachlan might say we fumbled towards ecstasy.  I couldn’t stop thinking about things: the port-a-cath, the cancer, the unknown looming beyond us.  What if things didn’t work out for the best?  How would things between us be physically with chemo and the injection?  Would this be akin to our last time?  I wish I had paid better attention to last time we were together; it was the last time we were both “healthy.”

The more I tried to shut off my head, the worse it seemed to become.  I was so busy anticipating pain, that I couldn’t relax enough to enjoy being with my husband.  There was definitely concern over his hitting the site of the port.  (No, really I’m not overprotective of it at all.)  I was also concerned that I would move wrong and bust open said site, or the one on my neck…or even just have the wonderful spasm of pain in my right side that happens periodically.  I kept reminding myself to relax, to focus on Milo –who was of course focusing on me and seriously worried something was wrong—but I couldn’t.

Physically, things weren’t so different and eventually I talked myself down off the proverbial ledge.  Emotionally, I was clearly a wreck.  I had missed being with my husband in this way; the physical bond that we have is amazing and strengthens the emotional one.  He was gentle and loving; the look in his eyes was so tender that I cried.  With him, I felt so loved but I also felt so lost.  I’m honestly scared that things between us are going to deteriorate as the treatments begin.  It’s not going to be the same between us.  The side effects of the drugs can put a damper on a regular life as it is: they sap energy, make people nauseous and in some cases make people lose hair.  Not exactly the most attractive set of side effects.

I’ve said it before and I’ll probably say it a lot: I want my life back.  Cancer is messing with my health, but I can either let it completely victimize me or I can control the rest.  The love Milo and I share is one that neither of us ever expected to find. Love making is possible with cancer: it takes a few different maneuvers, a little extra work and a lot more tenderness, but it is feasible.  It’s more about relaxing and remembering that the man (or woman) you are with loves you and isn’t going to do anything to hurt you.  Just be ready to cry, especially if you’re an emotional mess like I am.  And unless you happen to be some kind of porn star, be prepared for a few fumbles along the way.  You’ll laugh about them later, I’m sure.

Speed Bumps

After a whirlwind of activity moving us towards treatment, this week we hit a bit of a stall.  When we met with Dr. Hutchison on the 17th, they told us the Lupron injection could be picked up at the pharmacy located beside his office and he could give it to me that day.  (Yay!  Instant menopause!)  Milo and I were more than ready to get things moving; while Dr. H finished with his prior patient, we headed to the pharmacy to get the drug.  This was where we met our first disappointment of the day.  Our CVS Caremark prescription plan told the pharmacy that we couldn’t purchase the drug there despite having told the doctor’s office they could call it into any pharmacy.  When I was willing to just pay for it myself and get going, I was told the cost was nearly $2000.  I am a nurse and we have a comfortable enough living, but that’s a bit rich for my blood.  Picking it up was clearly out of the question.

We returned to Dr. H’s office to give them the news that The Apothecary (the name of the pharmacy) was not an approved location and it would need to be called in elsewhere.  Pam, his MA, said she would take care of it for us.  She led us to the doctor’s office and we sat to talk to him.  He explained, again, what he intended to do with the Lupron while asking me questions a fertility specialist would be interested in.  After about twenty minutes, he had Pam take us to an exam room.  We were going to count how many follicles (potential eggs) were present in my ovaries and take a look at my female gear.  (I just love impromptu gynecological exams.)  What we discovered was, for me, equally as upsetting as learning I had cancer.  My ovaries were severely enlarged and both the ovaries and uterus were cystic.  While I had plenty of egg reserve, Dr. H felt that I hadn’t been ovulating for some time because of the size of my ovaries.  He immediately diagnosed me with PCOS (polycystic ovarian syndrome) and told me he wanted me on a special diet.  He recommended I see a dietician, explained I might need to go on Metformin once my chemo treatments were done and that as soon as possible we should get on the Lupron.

I left there in tears.  All these months of trying to get pregnant only to learn that my body had been fighting us from the get go.  He had calmed me slightly by saying the inflammation in my ovaries wasn’t the cancer spreading, but to know that I was why we couldn’t get pregnant really broke my heart.  It was just too much on top of everything else.

The next day, I went with my parents to meet with the nurse practitioner, Linda, at the oncologist’s office.  This is where we learned more bad news from the insurance companies –gosh they are awesome!  They were not going to cover the injection at all because “Fertility preservation is not an approved diagnosis.”  Thanks Caremark, you rock.  Apparently, infertility, or the preservation of one’s fertility, to the insurance companies isn’t something for which you should be treated.  If you don’t want a baby, though, we’ll happily pay for you to have the pill!  To top it off, Blue Cross Blue Shield was refusing to pay for my PET scan because “cholangiocarcinoma does not require a PET scan.”  What?  Because my tumor might have started in my bile ducts it doesn’t require a PET scan to see how far it had gone??? Really?  That’s…wow.

Linda didn’t really have much else to say since we seemed to have hit a brick wall.  She did, however, decide we needed some blood and that we would access my port to do it.  By this time, my mother had already withdrawn from the situation; she just couldn’t listen to us talk about the seriousness of my cancer.  It was far too much for her; as dearly as I love her, it is difficult to babysit her feelings when I need to be frank with my physicians.  I decided then and there that I needed to be really selective about who came to appointments with me or were allowed to sit with me during my chemo treatments.  Everyone might think they are strong enough for the situation, but when faced with the challenge of listening to the facts it is an entirely different ball game.

Linda led my father and me to the chemo room, where they would access my port to draw the blood.  I was not really that excited by the idea.  The port was less than a week old and tender to the touch; I didn’t want them to stick a needle into it, especially since this wasn’t a small needle.  It is a large, curved metal needle that is insanely painful looking to the casual observer. Unfortunately, I didn’t get a say.  They sat me in one of the chairs where they would give chemo and I waited about ten minutes, growing more and more anxious by the second, for a nurse to come over and access the port.  The nurse didn’t introduce herself, but was kind and sweet, trying her best to make me relax.  Though she admitted it would hurt a little, she offered to spray a numbing agent onto my skin to help a bit.  The numbing stuff was cold and then stung like pins and needles.  Before I could do much else, she had me turn my head, take a deep breath and on three let it out slowly.  On three, she jabbed the needle into my port.  I flinched.  Damn it was sore, but it didn’t hurt as badly as I had expected.  In fact, it was no worse than getting a shot into the muscle of my arm except for how tender the site was.  She had drawn the blood and de-accessed the port before I could even complain.  The nurses there are especially good!

The next day, I was back to my light duty at work reading charts for review.  My boss, Ann, had been kind enough to get Employee Health to find me something to do so I wouldn’t lose my job.  I have to admit, it was a major relief not to be stressed about job security.  While there, I tried to contact Caremark about the injection but they wouldn’t budge even a little.  I needed the injection, pronto, so we agreed that we would just pay for it (ouch).  Monday I get the injection from Dr. H and I should start chemo sometime this week.  Here’s to the battle!

The First Shower

After my port-a-cath was placed, the nurse told me I was free to shower the next day so long as I felt steady enough and could keep my dressings dry.  A trick we tell patients leaving our Neuro unit after a surgery is to use Glad Press N Seal wrap; it will connect to the dressing well enough to keep it dry and with a little piece of bandage tape, the dressing will be pristine after a shower. It is not something any of us have had the opportunity to put into practice; we’ve just heard from someone somewhere that it works. I wanted a shower badly enough today that I was willing to give anything a try.

Glad Press N Seal in hand, Milo and I embarked on one of the most ridiculously entertaining showers ever.

(For those of you that might find knowing about a shower a little TMI, stop reading now!)

The port-a-cath was placed low enough on my right breast that when I’m not wearing a bra my D-cups pull on the incision.  This, as you can imagine, was not comfortable and required me to wear a bra pretty much 24-7 for the first few days.  Showering in a bra was not really feasible, at least in my mind.  Some creative thinking was required: how was I going to hold up my right breast and shower?  Better yet, how could I wash my hair or my body with the limited range of motion I had in my right arm anyway?

Easy, use my husband.

I stripped down, taped the Glad Press N Seal over the wounds to my neck and chest and clutched my right breast light a football protectively against my chest.  Milo and I climbed into the shower together and I held my breast as steady as possible as he washed my hair, complete with music from Looney Tunes (Buggs massaging Elmer’s scalp as seen here).  As he scrubbed, he mumbled about having long hair once and not recalling exactly how to wash it as he flipped it around and hoped it wouldn’t knot.  I hoped so too; I didn’t really want to know what it would feel like to have someone brush my hair in a harsh manner to remove knots when I could barely go over speed bumps in a car without whimpering in pain.

When it came time to wash my face, Milo looked at me expectantly.  I could tell the thought of getting near my eyes with my special skin scrubbing face wash was not really appealing.  The conversation went something like this:

“But I have to wash my face or else I’ll break out.”

“So wash it.”

“I can’t exactly hold my breast and wash my face with one hand, it doesn’t work.”

“Why?  Can’t one hand reach the whole face?”

He had a point but still, it seemed awkward.  I thought of a compromise.  “All right, I’ll wash my face if you hold my breast.”

Seriously, I can’t make these things up.  Milo allowed himself to be a stand in bra while I washed my face and then he helped me finish bathing.  When we stepped out of the shower and I was wrapped in a towel, he removed the Glad wrap and cleaned the area between the bandages with a clean washcloth.  Unfortunately, this is where I broke down and cried.  As funny as the image of my six-foot-two husband standing in the shower gently cupping my breast so I could wash up will always be, it was also seriously degrading to not be able to shower on my own.  I couldn’t even attempt it since my right arm wouldn’t lift above shoulder level.  Cancer was stripping me of even the simplest things and I was falling apart because of it.  I didn’t want to need help rising from the couch, or showering, or driving.  I wanted to be as independent as I had been before.  While I knew deep down that the situation was temporary and the wound would eventually heal enough for me to do things on my own again, in that moment I felt shattered.  I couldn’t wait for us to beat cancer so this would be over.