One Week Follow Up / Pathology Report

Today I had my one week follow up appointment with the surgical team.  Other than being a little hoarse and a bit tired in general I'm feeling pretty good today.  The head surgeon said to give it another three week for my voice to recover and to let them know if it's not healed by then.  He also said that the "lump in my throat" feeling would go away as the swelling continued to reduce. Sometimes it feels like something pressing down on my throat so I can't swallow right, breathe well, or talk at all.

Gross details (skip to next paragraph if you're squeamish): He said the incision looked great but he wanted me to work on getting the scab to come loose by cleaning it with hydrogen peroxide and applying some lotion to soften it up. Normally it would have come off already but since I started getting a rash from the topical antibiotic gel I stopped using it.

They also gave me a copy of the pathology report.  They presented my case at a conference yesterday (my cancer is famous!) so they had the results sooner than usual.  The report confirmed the diagnoses of papillary thyroid carcinoma along with a multinodular thyroid and mild chronic lymphocytic thyroiditis.  The biopsy showed the original tumor as being 1.8 x 1.5 x 1 cm in the upper pole of the left lobe of the thyroid gland.  The pathalogic stage was listed as pT1b pN0 which means a large stage 1 tumor with no lymph node involvement.

That being said, under "lymphatic/vascular invasion" it says "Present".  The surgeon mentioned that due to presenting my case at the conference they have also already determined a treatment plan that will include radiation.  Since none of the lymphnodes they biopsied showed cancer I can only guess that the invasion is vascular rather than lymphatic but I'll have to get clarification.

The other reason they may be considering the radiation is how close the tumor was to the surface.  When they remove a tumor they try achieve a certain "negative margin" size but that's not possible in the throat because other than the thyroid the only other stuff in there is muscle and cartilage which can't be cut (unless it was a life-saving measure which it wouldn't be in this case).  There was only 1 mm between the nodule and the outside of the thyroid which is too close for comfort.

The only other interesting finding was "vague nodularity" of the right lobe which could either have been due to the thyroiditis or have been the beginning of another tumor.  There were also a couple of benign cysts but no one cares about those as it's natural for most people to gather cysts as they age.

The next step from here is to meet with the endocrinologist next Tuesday.  He'll be taking charge of my care from here out.  We'll probably talk about the radiation and all that is involved with that, as well as setting up a plan for lifelong treatment for my lack of thyroid hormones.  As for me, I'm doing what I can to rest and recover even if it is a bit frustrating.  I sat home on the couch all day yesterday after a very exhausting 30 minute trip to the grocery store the day before that.  The spontaneous napping is becoming less frequent, though, and I'm hopeful that by next week I'll be pretty close to back to normal-for-me.

Thank you all for coming along on this ride with me!  There is still a ways to go before the end, but the biggest, scariest part is behind me now.

The Girl with the Green Ribbon

I lay in bed awake a few nights ago.  It is hard to sleep comfortably for more than a couple of hours because all of the muscles in my neck tighten up and begin to ache.  It felt like someone had drawn a burning line around my neck, even though the surgery scar is only a few inches long.  This sparked a sudden memory of a story I had read many moons ago when I was still in elementary school.

When I was younger I loved scary stories. I grew up reading Stephen King because that is what my dad read but the particular story I read was actually from a children's chapter book from the school library.  The gist of the story, as I remember it is that there was a girl with a green ribbon around her neck.  She meets a boy who falls in love with her and throughout their life he repeatedly asks why she always wears the green ribbon, and she tells him not to press the matter.  They get married and grow old together, and one day she when she is old in sick she tells him to to untie the ribbon.  When he does, her head falls off.

I'd completely forgotten about the story and the book until I woke up feeling like someone had tried to cut my own head off, but apparently it was as memorable to others as it was to me because it's the one story everyone can recall reading from it.  The book is called In a Dark, Dark Room and Other Stories by Alvin Schwartz.  It's the kind of thing I think modern parents would shy away from letting their kids read but honestly scary stories scared me less as a kid, perhaps back then I was less inclined to believe that terrible things could really happen.  

So that's a little bit of random for your day!  Last night I slept real sleep for a long time.  We tried to go out for a bit today, just to walk around the mall and try to get me some exercise without getting rained on but we only made it one lap around the upper floor before I was out of energy.  I've moved on from the mostly liquid diet to mostly soft food but I am dying for some real food, especially a salad.  Hopefully with a little more rest I'll have the strength to go shopping and start cooking again.  

I've got a few more days before the follow up appointment.  I seem to recall one of the surgeons saying by then they would have finished biopsying what they took out so maybe then I'll find out about the radiation. I expect, like all things health related, it will take a few more visits to get things sorted out after that and to actually get it done.  Then maybe I can start getting the rest of my life back.  At least I still have a head on my shoulders, so it can't be all that bad.

Kickin' Thyroid Cancer Phase 2: Recovery

View out of the hospital window at 12:30 am after another shot f heparin.

Friday morning I woke up with the sun streaming through the window of my hospital room at 6:30 a.m. and decided it was time to start pulling myself together.  Sleeping is about the worst thing I could do because it allowed everything to stiffen up so I wanted to get my next dose of pain medication but my stomach felt horrible from taking it all night with no food.  The hospital kitchens are open from 7 am to 11 pm and you can order whatever you're allowed to for your diet during that time which meant I had about half an hour before I could order breakfast.

Being in the hospital really simplifies your priorities for you. Aside from wanting food and pain relief, I wanted to go to the bathroom.  I was still strapped into the compression cuffs for my legs and wearing my bright yellow "Fall Risk" arm band so I had to push the call button and wait for someone to get me out of bed.  That time of day everyone else wants the same thing and they're switching over staff so I waited about 15 minutes for someone to come get me up, which was not a bad amount of time,all things considered.

They helped me out of bed and to the bathroom, then said they would let me loose to wander around in the room (very carefully) for awhile.  I shuffled to the window and sat down in the recliner while I contemplated that which is hospital breakfast.  I felt so nauseated that nothing sounded good but I had not eaten in over ten hours.  I knew that regular consumption of food is on the requisite list of behaviors that get you out of a hospital so I settled on peppermint tea, cream of wheat with some brown sugar, and ambitiously ordered the biscuits and gravy because that seemed most likely to fortify my stomach against future doses of percocet.

After that I sat in the recliner for a little while longer reading the issue of the Seattle Times they had brought in the day before and doing my best to enjoy the view.  A little while later one of the surgeons came in for my follow up.  I immediately got a lecture about not taking enough pain medication (he could tell by how stiffly I was holding my neck) but he let me off easy since it was taking the kitchen awhile to bring up my food.  He said that the determining factors of whether I got to go home were if they could remove the drain, if I could keep down the food they were bringing, and if I could take enough pain pills to get the pain under control.  Challenge accepted!  I was so ready to go home.

I had paid attention to when they were emptying the drain during the night as to how much was collecting in the bulb and already felt confident that it would come out.  He agreed and got to work removing the small tube.  I felt a little bit of tugging as he pulled it out but that was it.  He taped on a piece of gauze just in case it continue to leak for a little bit, gave me another lecture about taking the pain medication, and left.

A short while later my breakfast showed up.  The smell made my stomach churn but I was a woman on a mission.  I ate the biscuits and gravy and made it through about half of the cream of wheat before the nurse, Summer, came in to see me.  She was a very pretty blonde, in a girl-next-door sort of way.  If I had to guess I'd say she was in here late twenties and about five months pregnant.  She gave me a dose of percocet and helped me get settled.  A few minutes later the tech and her student trainee came in to see if they could convince me to take a walk but after all the "activity" of the morning all I wanted was a nap so I begged off.  

About an hour later I woke up and the pain was still not under control so I called for some more medicine.  Summer took away the rest of the food and we talked a little about what the doctor had said about me being released and she seemed perfectly happy to help me make it happen.  She thought I might feel less queasy if I got up and walked around.  Normally the nurse doesn't have much time to spend with patients, but she said she wasn't busy and would walk me up and down the hall.  We went down to the glassed in sitting area at the end of the hall. We talked a little about pregnancy and how she hated sleeping on her side. I being an inveterate side-sleeper gave her some tips on how to make it more comfortable (pillows, lots of them). The view was even better in the daylight but I didn't have the energy to stick around for it so we went back up the hall to the nurse's station then back to my room.

When we got back to the room she said she would get started on having me released as soon as Sean made it to the hospital to pick me up.  Unfortunately, between me and him was all of Seattle's morning rush hour traffic.  Even though I felt like I'd been up for a long time, it was still only 9 a.m.  I crawled back in to bed to sleep and get up the strength to leave.

About an hour later, Sean finally arrived.  Traffic had been bad but parking in the hospital was even worse.  I felt a little bad for rushing him right back out the door but I was eager to go so I handed him some prescriptions to get filled and he went off to find the pharmacy so they could be filled and picked up on our way out of the hospital.  The two techs came in to get me out of the compression cuffs and remove the IV from my arm.

Sean returned just as they were finishing up so I shooed them out of the room so I could change into clothes to go home in.  I didn't use half of the stuff I packed, but after a whole day spent in a hospital gown I was happy to have clean clothes to put on to go home in, if you can call yoga pants and a nightshirt "clothes".  As soon as I was dressed the nurse came with my discharge papers.  It was lucky that Sean was there because I hardly remember the conversation.  Between the drugs and the work of getting ready I wasn't really with it anymore.  I'd used up all of my energy fulfilling all the requirements to get to go home and now it was up to Sean to get me there.

Whenever you're in a hospital they don't like you to leave under your own steam so a transporter was called to take us to the pharmacy to pick up the prescriptions.  I'll be on medication for the rest of my life but for the next few weeks I'll be only a short-acting form so when they want to start the radiation treatment I won't have to wait for the thyroid medication to leave my system before starting.  It was at this point that I made the mildly distrubing discovery  that I was in a completely different building from where I'd had my surgery.  I thought they'd just moved me up a few floors, but apparently I'd missed a bit of the journey.

Sean didn't want to leave me sitting outside waiting for him to bring the car around so after the transporter droped us at the pharmacy and Sean got my prescriptions he wheeled me to the car.  After checking in the day before, I hadn't been anywhere in the hospital without someone else walking me there or pushing me in a bed or a chair, but Sean had been up and down between floors in three different buildings and got us back to the parked car easily.  We went up in the elevator, across a sky bridge, down a hall, down another elevator and finally to the car.  Even though I'm sure I didn't look it I was ecstatic to be so close to being out of the hospital.

Sean had driven back and forth to the hospital so many times in the last month that he knew the way already which was good because I was in no condition to play navigator.  I spent the whole ride home focusing on keeping my eyes open so I could look out the window so I wouldn't get car sick.  A little more than twenty minutes later I was finally home!   Sean helped me up the steps and into the house and then we both slept for a few hours.

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Since then I've slept on and off.  It's hard to sleep for  more than a few hours at a time or my neck gets really stiff.  Yesterday was the third day since the surgery and it's been the worst, so far.  I nearly passed out that morning  when I was putting the antibacterial gel on the incision. I've been very nauseated and had a few episodes of fainting (thankfully all while already being in a bed).  I've also been coughing up -- or at least trying since the muscles aren't working well -- a lot of mucus after sleeping but I think that might be the after effects of the intubation and finally being able to drink enough consistently to be hyrdrated.  I keep losing my voice and when I do have it I feel like I am shouting just to be heard at a semi-normal volume.

I feel like today I may have turned a corner, though.  The pain seems to be subsiding and I'm taking the pain pills less frequently, but I'm still taking the pills when I notice the stiffness is getting worse or I'm clenching my teeth.   When I'm awake I try to keep stretching my neck and moving around a little to keep the muscles limber.

The thing that feels the worst is eating so I feel constantly hungry but it is so tiring to eat more than a little food that I run out of energy before I get full. Several friends brought me lots of tasty food, though, so when I am able to eat at least it's good food.  Other than a box of organic mac n' cheese last night we have not done any cooking since I got home from the hospital which has been a blessing.  It won't be surprising to me if I've lost some weight through all of this.

I've got a follow-up appointment with the surgical team this coming Friday.  By then they should have completed the full biopsy of my thyroid and decided what the next step is in terms of treatments.  There is still a chance they will decide against the radiation treatment but it is probably a very small chance.  For now my job is to rest and take care of myself.

Kickin' Thyroid Cancer Phase 1: Surgery

View from the waiting room.

Yesterday at about 7:30 am I got a call from the hospital.  They were running way ahead of schedule so they wanted me to come in at 9 am instead of 12:45 pm.  We'd stayed up a little late to visit with friends who had come to bring us food and keep me distracted so we were both tired, but determined to get there and have the surgery as soon as possible.  I rushed through a shower and then packed while my boyfriend, Sean, got his shower and ate some breakfast (no food or water for me).

We pulled into the parking garage below the hospital at 9:03 am and rushed to the check in desk.  By 9:30 I'd been arm banded (Sean joked that I'd been tagged but it's not far from the truth, they ) and we got to sit in the waiting room for a few minutes.  The hospital is actually a series of buildings in downtown Seattle that are connected by sky bridges so most of the waiting rooms have great views.

About 15 minutes later, just as Sean was getting comfortable, they called my name and took us into the maze that is the inner, hidden portion of a hospital: Narrow, winding corridors packed with people and equipment.  If we hadn't had a guide I'm not sure I could have found my way.  This being my 4th surgery, I was prepared for what followed.  I always braid my hair in pigtails using hair ties with no metal because it keeps my hair out of the way.  I put my street clothes in a garment bag and put on my hospital socks with the rubberized soles, gown, robe, and hair net (another reason to braid my hair since it's easy to tuck in).

Each of the people who would be in the surgery stopped by for a few minutes.  Some to ask questions, but others just to introduce themselves (In my case, 3 doctors, 2 nurses, and the anesthesiologist).  I love that they do this.  It makes it a little less scary to walk into a surgery suite when you've already met the crowd of people waiting for you.  I also got the results of the CT they'd done a couple weeks ago; the cancer hadn't spread to the lymph nodes.

Because they were removing my thyroid they had to do a blood test before hand to check my glucose levels and they also inserted an IV.  I can usually handle all other needles but I hate IV needles because they are usually huge and for surgery they put it in the back of the hand.  She did a great job, though.  I barely felt anything and I could still move my wrist comfortably.

After they finished prepping me they walked me into surgery.  They let me keep my glasses on until they I got in the room so this is the first time I've really seen an operating room.  They are surprisingly large with a single bed in the middle of a room that's maybe 20 x 20 and huge lights hanging over the table.  It looks surprisingly similar to a lot of alien abduction movie scenes where the aliens are about to start experimenting on the human.  The room needs to be that big so there is room for all of the people and their equipment.  They got me situated on the table with a rubber donut under my head to stabilize it and a pillow under my knees.

They put a mask over my nose and mouth, first with oxygen and then with the anesthetic.  I always try to let them know that it's working so right before I fell asleep I said, "I'm going down!"  They said after they knocked me out, they would regulate my unconscious state through the IV and intubated me so they could paralyze all the muscles during surgery.  There are two large muscles (called the sternocleidomastoid) that go from the sternum out to the collar bones and then up to the mastoid bone (just behind the hinges of the jaw) that cover the sides of the neck and below that are two sets (one on each side) of three muscles called the strap muscles. All of these had to be pulled to the sides to get to the thyroid which is where a lot of the pain comes from afterward.

A couple of hours later I woke up in recovery.  It seemed like an instant to me, but I know from experience that I was probably in recovery for 10-15 minutes before I came to.  They gave me a nasal cannula (a tube that goes in your nose with oxygen) and some warm blankets. During surgery they had strapped compression devices around both my legs to keep the blood from pooling and forming clots and I could feel them alternating squeezing my calves.

Due to the surgery on my neck and the intubation it was difficult to speak at first.  It was really frustrating because the nurse (who was otherwise a very nice man) kept asking me questions like "Do you want your glasses on or off?"  I kept saying "Yes" because it was all I could eek out.  One of the surgeons stopped by and gave me a quick talk on taking care of the scar and a giant tube of antibacterial gel to put on it.

After I was conscious enough and breathing well they took off the oxygen and a transporter came to take me to my room.  I don't remember much of the trip but I was happy to see I had a small room to myself and wouldn't have to share with someone who might want to chat me up.  They wheeled the stretcher right next to the hospital bed and then had me sit up and alternately slide my hips and move my legs until I was all the way on the bed.  A lab tech came in to draw some blood so they could test my calcium levels since the tiny parathyroid glands that regulate blood calcium are located right behind the thyroid and sometimes can get damaged in surgery.

I was so happy to see my boyfriend was right behind them in the room.  I was also more happy than is reasonable to see a cup of water and a little plastic tub of red jello because I hadn't had anything since the night before.  I had him take a picture of my neck so I could see the incision.  The little tube was to drain went to a rubber bulb that would help drain the wound for the first day.  Other than a strange tugging sensation every once in awhile, it didn't really bother me.

He helped spoon feed me the jello which took about fifteen minutes because I could only eat a third of it at a time before getting tired.  Once I finished eating I sent him home to get some food and sleep himself.  By this time it was about one in the afternoon and he'd been up since 7:30 am with just a bowl of cereal and a few hours of sleep to go on.

I dozed on and off for about an hour when I noticed my right hand had started swelling.  I lifted it to see what was going on and the alarm on the IV drip machine started going off.  The nurse assistant came to check on  it and we tried to see if we could get my arm in a position where it would keep flowing, but after the third time the machine went off my nurse, Susan, decided it was time to get it repositioned.  The IV tech came in and moved it into my upper arm which ended up being more comfortable. Then Susan helped me order some clear broth, some peppermints and some bottled water from room service.  I wasn't being allowed anything solid until I could prove it would all stay down.  She also gave me a shot of heparin in my belly to help prevent blood clots from forming which is a big risk following surgery/hospitalization.

I dozed again until they arrived with my "lunch".  Since Sean was still home resting it took me even longer to eat the broth than it did the jello, but I was happy to have anything going into my stomach.  After that I rested some more while I waited for Sean to get back.  Up until about 6:30 pm I had felt fine.  I'd been up to the bathroom twice -- being in a hospital is one of the few time that people get excited about you peeing -- and hadn't needed any extra pain medication.  Then about ten minutes before Sean arrived I started having excruciating pain in my bladder.  By the time he got from the parking garage to the room tears were streaming down my face.

The hospital staff changes every 12 hours at 7 p.m. and 7 a.m. so in the midst of all the pain my new nurse (Lee) and his tech came into see me with Susan so she could hand me off.  They gave me my first dose of percocet but it didn't help at all so the tech helped me into the bathroom.  They make you pee in a measuring cup that is set inside the brim of the toilet (they call it a "hat") and I nearly overflowed the cup.  I'd been to the bathroom only 45 minutes before but between the broth and the IV fluids I guess I'd gone from empty bladder to excruciatingly full bladder before I could tell my bladder was even filling up.  Thankfully this was the only significant pain I've had.

After this it was time to eat dinner.  I begged Lee to bump me up from clear liquids to the all liquids menu so I could have some pudding with my broth, but he said he thought I was doing well enough that I could have some soft food, so along with the pudding I got some mac and cheese and a mug of chamomile tea.  Sean helped me eat my dinner then sat with me for about an hour while I read a bit of a book I'd brought. Then the tech who had helped me to the bathroom got me up for my first walk since the surgery.  We went down the hallway to a nice area with floor to ceiling windows and a great view of the city, then back to my room.

A little after 9 pm I sent Sean off home again.  In the weeks leading up to the surgery I'd been worried about staying in the hospital overnight by myself, but between having a room to myself and the staff making me feel so comfortable I decided it would be mean to ask him to stay in the tiny uncomfortable recliner with the staff coming in every hour or two to check on me.  He got me situated and then left for the evening.

Overnight they came check my vitals every couple of hours so between that, more pain meds, bathroom breaks and another shot of heparin I didn't get much sleep.  In the middle of the night one of the compression cuffs got twisted around and was causing my foot to flex every time it inflated so I had to call the nurse in for that as well.  The compression cuffs were a mixed blessing.  They help prevent blood clots and also work like a massager so I wouldn't have been able to lay there that long without them, but by the next morning the friction had made my skin so irritated I still itch from my knees to my ankles.  If not for the drugs, I don't think I would have gotten any rest at all.

By about 4:30 a.m. I was feeling incredibly exhausted so I refused when they asked if I wanted to get up again and slept from then to about 6:30 a.m. when the sun started coming up over Seattle through my hospital room window.

Surgery Day

Well folks, this is it!  I'm up, bags are packed and we're headed soon to downtown Seattle to check in at the hospital for surgery.  I went out late with Heather, Allen, Ashley, and Sean to get pizza at Zeek's for my last solid meal for the next few days.  It was so nice to be surrounded by fun and loving people.  It made hard to feel scared about today.  I also got to see Dheeraj and Phoebe who I haven't seen in ages but are among my favorite people I've worked with at Microsoft.  I can't help feeling blessed by knowing all these wonderful people.

Once I get to the hospital they'll check me in, and then I'll get to wait for an indeterminate amount of time before they prep me for surgery.  Pre-surgery prep usually involves changing out street clothes for a hospital gown and some ugly grey socks.  I can't wear either contacts or glasses into surgery so I'm basically blind after this point.

After getting fashionably appropriate they will stick me on a gurney and put on a pulse/ox monitor (clips on your finger) that measures pulse and oxygen saturation.  They also will put on an automated blood pressure cuff that periodically inflates and checks my pressure.  Lastly, they  will insert an IV.  Generally they do this by inserting it into a vessel in the back of your hand.  To me it's always felt like they' were trying to lodge the needle in the metacarpals of my wrist.  The only good news is that shortly after they do this they start giving some kind of anti anxiety medication and you suddenly don't have any worries anymore.

Everyone I meet will ask me for my name and birthdate to confirm I am who they think I am.  The anesthesiologist will stop by a for a brief chat about his or her roll in the procedure and get my informed consent. Then the surgeon will show up and I'll have to confirm with him what the exact procedure to be performed will be so that he and I are in agreement (so I don't get the wrong part lopped off).

The ORs are bigger rooms than you expect but I can never see much with no glasses.  There are usually  a dozen ore more people in the room.  Then right as they're going to knock me out they'll call a stop for a safety check where every person involved in the procedure has to agree that the person and the procedure are correct.  After that comes the easy part for me.  I'll be unconscious for a few  hours while they work on me and then wake up some where with warm blankest, juice and cookies.

I'm  a bit hazy on what will occur after that, but after I've recovered sufficiently from the anesthetic I'll be taken off to my room for the night and hopefully be fed real food.  Then it is up to me to try to sleep as much as I can.  At some point my boyfriend will likely leave for the night and I just hope I'll be so out of it I'll sleep through the night.

This will be my last blog post for a few days.  Please check the Facebook page for updates instead.

Start the Countdown

The hospital called.  My check in time for surgery is 12:45 pm tomorrow.  I still need to pack for the hospital but the house is clean and the Skinny Loaded Baked Potato Soup is in the works.  A few friends are going to stop by this evening to drop off some food and give me something to do other than watch the clock.  They day before I surgery I always feel like I get a free pass on staying up as late as I feel like because more than likely I'll be spending the rest of the following day asleep.

I'm going to try to sleep in, but I have a feeling I'll be up by 8 am, dusting or whatever else I can do to keep myself busy.  I'm sure I should be trying to rest, but I'll be doing a lot of that after Thursday and frankly it is boring as all get out to be laid up in bed.  Maybe I'll finally finish Skyrim (after only a year and a half).

If you want to show your support tomorrow wear blue, pink, or aqua for me.  I'm also open to all the prayers, mojo, and good vibes anyone wants to send my way.  Thank you all for giving me your advice, support, and love.

My Version of Surgery Prep

When faced with significant life challenges some people turn to drugs or alcohol, or developing an eating disorder.  Not me.  I turn into Susie Homemaker.  As far as coping mechanisms go, I don't think cleaning binges with fits of cooking are too terrible.  It keeps me too busy to let the panic really set in and gives me a sense of purpose and accomplishment in the face of something about which I can do nothing.  I would much prefer to have a zen-like calm about it all, but I can settle for a clean apartment and a fridge full of food.

I think at this rate I'll be cured of cancer before I can fully accept that I have it.  The same thought I had on the way home from the hospital after I got the diagnosis keeps popping into my mind: "I can't believe I have cancer.  That's so dumb."  I should believe it.  After nearly a year of school in which we've been learning about the most common cancers of all the major organs of the body I had started to believe that it might be impossible for anyone to escape having cancer.  It's one of those things that you know happens to people, just other people.  There aren't a lot of types of cancers common for people in their thirties; I happen to have one of them.

Yesterday we cleaned out the fridge and went shopping for a bunch of soft foods for me: ingredients for making soup, vanilla ice cream, two flavors of apple sauce, eggs, and generic cheese crackers (which I might not be able to eat for a couple of days). I've already got greek yogurt and oatmeal to round out the rest.  I also did a few loads of laundry and dishes before I ran out of energy.

Today I got up at about 9 am after waking up at 5 am, reading for two hours and falling asleep again.  I finished washing the remaining few dishes, scrubbed the kitchen top to bottom, swept and mopped the floors, washed all of the bedding, vacuumed the bedroom, and washed and folded the last two loads of laundry.  I also made a pot of gingery carrot soup.  It basically looks like baby food but it's tasty, healthy, and quick to make.

Tomorrow I still have to make the cauliflower potato soup, scrub the bathroom, vacuum the living room, and pack.  The hospital called today to the pre-surgery check in, but I won't find out when my surgery is until they call me tomorrow.  I called their Patient Account Services (aka Billing) department again and confirmed that everything is all set with them.   I never received a letter about my financial aid application but everything is all set in their system and I'm running out of energy to freak out about these things.

Come what may (barring another reschedule by them), Thursday I'm having surgery.  It couldn't come soon enough.

Two Days, One Night Stay

After three surgeries, I've got the outpatient thing down pat:  Wear loose clothing with elastic waistbands, no metal, hair in braids, slip on shoes, leave all your valuables at home except your driver's license, and forget wearing your contacts, just bring the glasses.  As long as you are out the door before patient recovery closes for the evening you don't have to stay overnight which is a powerful motivator for me.  For my second surgery I left in a hospital gown with two hospital blankets wrapped around me because my surgery had taken so long they were "threatening" to keep me overnight if I didn't get up and leave right then.

This time I don't have a choice.  The overnight stay is mandatory so they can make sure that I'm doing certain things, like breathing and swallowing, which I suppose are important.  The tough thing is that I won't know when my surgery will be until the day before.  If it's early in the morning I can expect to possibly be awake in the evening and in the morning but if they don't start until later afternoon I'll probably sleep through most of my stay.  I've started a tentative packing list based off some internet research.

What to Pack for the Hospital - Before Surgery

1. Food/Water - I won't be allowed to eat starting the night before, but whoever is with me is more than likely to get hungry.  I'm also allowed to drink water up to two hours before the surgery so depending on when the surgery is it's better to bring our own rather than pay for expensive and crappy tasting hospital food.
2. Entertainment - Even when you have a surgery time, that's sort of the minimum time before the surgery starts and you have to be there at least an hour before your surgery time.  The later you're scheduled in the day, the more likely your surgery is to start late.  For my second surgery I waited 2 hours past my surgery time.   It takes about 10 minutes to read every "good" waiting room magazine so it's best to bring your own entertainment.  In my case I'll have my phone and probably my Nintendo DS with DragonQuest IX because I never finished it.
3. Photo ID - You can't get registered without it.  If I had health insurance I'd bring that card, too, but the wallet stays at home with all the credit cards, etc.  
4. Surgery Ticket - This is a slip of paper they give when you sign up for surgery that has all of your information in one place.  It's not necessary but it makes the process go faster.
5. Durable Power of Attorney - Right now, if I'm unconscious no one has the right to make decisions about my medical care because I'm not married and my "next of kin" live out of state.  The durable power of attorney will give my boyfriend the right to make decisions about what happens if I end up in a coma, brain damaged, with massive organ failure, etc.  It's not a conversation you really want to have with anyone but we've talked about how long I'd be willing to stay hooked up to machines and what happens if the worst happens.

What to Pack for the Hospital - Overnight

1. Nightshirts, (2) - The spare is in case of accidents which sounds like something I would do.  Long shirts will protect my dignity better than a hospital gown and be less fussy than a set of pajamas.  When you're just recently anesthetized and in a lot of pain it's like dressing a giant toddler. 
2. Undies  - I may not be allowed to wear them (depending on what state I'm in coming out of surgery) but nothing says "awkward" like wandering around a hospital full of people with nothing on under your gown.  I was a girl scout (very briefly) and I'm pretty sure extra pairs of clean underwear fall under the edict to always be prepared.
3. Warm socks - The hospital will undoubtedly give me a pair of ugly grey socks with rubberized paint on the bottom before heading into surgery, but they're not super warm and overnight hospitals aren't cozy.
4. A real pillow - I learned when I was volunteering in the Urgent Care at Group Health that good hospital pillows are hard to come by.  The ones they have are either covered in a plastic bag (which you can imagine what that sounds like every time you move your head) or rubber coated which doesn't exactly bring cuddly time to mind for me.  That being said, I'm not sure how I feel about bringing my best pillows to the hospital so they can get MRSA rubbed all over them.  I might need a pillow that can go in a hot water bath when it gets home.
5. A throw blanket - Because in my observations, they basically give you several thick sheets and call it bedding, with no real blankets.  The hospital's solution to cold patients is to warm up some of these thick sheets and place them on top but eventually you start to look swaddled and it is uncomfortable because you can't move around.
6. A robe - I don't know what my accommodations will be like but I'm guessing being rather on the poor side of society at the moment that I'll be sharing a room with other people and may have to walk a ways to find a bathroom so it's a good idea just to be prepared to be out in the cold.  
7. Rubber soled slippers - For the above same reason.  Slip on shoes that are less likely to result in my accidental injury on freshly waxed floors.
8. Various Electronics & Cords - I'm planning on keeping my phone with me overnight for communication/entertainment and so I can plug in my headphones and drown out any obnoxious neighbors. Since there won't be anyone with me overnight any other valuable things will go home with my boyfriend so they won't be at risk of getting stolen..
9. A paperback book - "In my day, television was called 'books'..."  I will not say I wouldn't be miffed if someone stole a book from me, but I can afford to replace a book.  I can't afford to replace any of my other electronics so this is the safest bet for textual entertainment.    I'm also realistic enough to know that mostly what I'll want to do for the first 24-48 hours is sleep as uninterrupted as possible so arranging for my entertainment might be unnecessary.

What to Pack for the Hospital - Next Day

1. Toiletries- I have a ton of mini toiletries from going to a wedding earlier this year so I'll be bringing all the tiny soaps/shampoo/body wash etc. in hopes that I'll feel well enough to get up and shower.  I'll also be packing toothpaste and a toothbrush because that will be happening even if I have to swish with a hospital cup and spit into a plastic urinal. There will also be a the other random stuff: hairbrush, lip balm, washcloth for my face, lotion, deodorant etc.  Whatever I normally use in the morning when getting ready.
2. Clothes to go home in - Even though the surgery will be in my neck instead of my pelvis this time, I still plan on packing loose, uncomplicated clothing that can all be easily slipped on with a minimum of neck tugging.  This includes sweat pants, a wide necked shirt, underthings, and slip on shoes.
3. Snacks - Since who knows if/when they'll feed me during the day while I'm waiting to be discharged. I'll have to see what I can find that will be soft enough to swallow but not need refrigeration.  I'll probably also pack something for my boyfriend since he is perpetually hungry.  
4. Medications - If at all possible, I'm going to try to fill any prescriptions I need before leaving the hospital.  Most hospitals have a pharmacy within them and the last thing you want to do on your way home is stop at Target and wait in line for 15 minutes while you're in pain.

So, that's my list!  Later today I'm going grocery shopping for snacks for the hospital and also so I can cook a bunch of homemade pureed soup tomorrow for me to have for the few days after I get home.  That way my boyfriend will only have to nuke a bowl in the microwave.  I can't believe it's Monday already!  Four more days to go.

Finals

Just when I thought I couldn't possibly get more tired: finals week. It's taking me three days of resting to recover from this past week but I'm finally feeling a bit more human. I survived this week, but just barely. It certainly affirmed my decision to take a break from school, but leaving school has meant leaving the program and if/when I am able to return it will be many months from now. For me, at least, this week was a lot more final than just taking a couple of tests.

I'm the kind of person that you have to nail to the floor to get them to be still. I won't be going back to school next quarter, and I won't be able to look for work until I've recovered from the surgery and completed the radiation treatment, which could be a couple of months. Even though I've got an agreement with the school to be able to come back next year, it might not be financial possibly.

I made the decision to take a leave of absence from school and at the same time to not make any decisions about the rest of my life until after this cancer business is over with. Of the two decisions, the second is proving to be the hardest to deal with. I know I'll need all of my energy to fight the cancer, but I can't help thinking about what will happen afterward. How will I put my life back together after the cancer and what will it look like?

I've always believed in working hard. The idea of taking a break from my own life, even for a couple of months, to do "nothing" but rest and recover makes me feel very anxious. I jokingly asked my boyfriend to print and sign a "certificate of completion" for the end of each week of recover so I'd feel like I was accomplishing something.

When I first got diagnosed a little over a month ago I somehow thought I was going to be able to treat it like a minor inconvenience and then get back to my life. Now I have to figure out what life I'll be going back to, or if I'll be moving on to a completely new life. In all this sense of loss, I've been reminded of what I still have. I still have me with all my strengths and optimism that I have gotten me this far. I still have my boyfriend, my family, and friends who are determined to hold me up when my strength fails and keep me hoping when doubt and fear overshadow my faith that it will all work out.

Where did this handbasket come from?

How is it that my life was already imploding by 11:30 am today? I feel like nothing has gone right for a week straight. I called the hospital this morning to find out what was going on with my application for financial aid and was told to call back on Thursday as it still has not been approved. I got a call a few hours later saying that they needed to reschedule my surgery because my surgeon is needed in another surgery that day. It has been moved to the 20th instead of the 17th, which means that I will not be able to recover before the beginning of next quarter.

 I have no hope of continuing school now. I have no idea if/when I'll be going back to school, if I'll be able to find work in the meanwhile, when I'll have my surgery, or how much my medical expenses will be. In fact, I know very little about my life at the moment. I have finals this week and I am not sure I'm going to pass all of my tests. I've submitted a request for a medical leave of absence from school. If they approve it then I will just get marked "incomplete" for this quarter instead of failing out of my classes.

 The phrase "gone to hell in a handbasket" seems to very much apply to my life right now. I have been frantically trying to hold all the pieces together these past few weeks and now it feels like they've been slapped out of my hand. I have had so much bad news in the last few weeks that I feel numb. All I want now is to survive the next three days and then sleep for a week.

Silently Screaming

Have you ever had those dreams where you are being chased by something terrifying, but the harder you run the heavier your legs feel, and when you open your mouth to scream nothing comes out?  I feel like I've been having that waking nightmare all week long.  There are so many decisions to be made about life, none of which I feel equipped to make.

At times I want to be like a stone and just lay down and let myself go where gravity takes me, fall where fate leads.  Sometimes I wish I was still a child and I could say, "Tell me what to do," and some wise person would say to me exactly what I need to do to make things right.  The harder I run around in my mind, the quicker I get no where.  For the last four and a half years, my goal has been to get a degree and become a sonographer.  For the last nine months it seemed like that was exactly how my life was going to play out.

Of all the things going on in my life right now, the cancer scares me the least.  I know what it is, where it comes from, what it looks like, and how to make it go away.  I'm not worried about complications from the surgery or what it will feel like to have radiation coursing through my veins.  What scares me is what having cancer has done to the rest of my life.

It's like someone threw a boulder in the middle of the stream of my existence and now I'm forced to find a new path.  Water gets to follow immutable laws of physics; it always gets to take the path of least resistance.  I wish that were true for me as well.  I suppose it could be, I could just let life happen to me but I need enough of that when I was sick from endometriosis.

The problem is that you cannot start your journey without first picking a path, and right now I no longer know what I want from life, other than to be happy and to feel safe.  I feel like I'm standing at the crossroads of the universe with a thousand different street signs pointing in every direction but no idea where those streets go.  I am lost.

Dan Gilbert, Harvard psychologist and author of "Stumbling on Happiness", says that studies show we are remarkably bad at predicting what will make us happy.  We imagine the unknown to be scarier or less likely to be positive.  For a goal-oriented person such as myself this is especially true.  I've joked that I have a contingency plan for the contingency plan's contingency plan.  When I read the Deathly Hallows, though I really got it when Harry Potter said, "When have any of our plans ever actually worked? We plan, we get there, all hell breaks loose!"

A couple of days ago I recieved this fortune in my fortune cookie, "Keep your eyes open for opportunities."  I don't normally make life decisions based off slips of paper stuffed in dessert, but right now it's the best I've got to go on.  Every time in life when I have gone against my instinct out of fear of the unpredictable, unknowable future I have set myself up for misery.  It's time to trust my heart and stop listening to the fearful, silent screaming in my head.

Love is a Circle of People

Last night we sat out on the covered deck on the back of our apartment eating dinner.  It was a pleasantly cool evening that was doing much to soothe my frazzled nerves after a hectic day.  I looked at my boyfriend and said, "Thank you for making dinner!"  He responded, "All I did was heat up the meat you already cooked.  You did the rest."  I told him that gratitude is the root of happiness. It is so much harder to be unhappy about what you don't have when you fill your thoughts with what you do have. The trick is that you can't just have gratitude when life is great and things are running smoothly.  You need gratitude the most when it feels like you are hanging on by a single, fraying thread. Boy do I need gratitude today.

It's a well known fact that people, as a group, suck, but that individuals can be capable of great love and kindness.  If you put enough individual specimens of awesome together it makes up for a lot of "World Suck" (to steal a phrase from John Green).  If you'll permit me, I'd like to recognize the people who over the last few weeks have selflessly given to decrease the World Suck in my localized area:

• My boyfriend, Sean, who is a singularly amazing person.  It would take all evening to list all of the things he has done for me in the last few weeks and it would be a drop in the bucket to all the things he's done for me since we first met.
• Heather, who unreservedly has volunteered (whether I like it or not, as she says) to be my knight in shining armor.  I've learned so much from you in such a short time, and not just about how to cope with cancer.
• My big sister, Niki.  She has always been my hero.  She's everything I could ever want in a sister: Brave, kind, loving, and willing to defend me to the death.  She has spent my whole life protecting me, even at times when I didn't know it.
• Lacresha, who loves me enough to listen to my incessant whining and then agree with me that "those people suck". I miss you!
• My friends Bonnie and Crystal.  These are two people who never hesitate to give. They don't even bother to ask if you need help, they just show up and start helping.  
• My friends and family everywhere in the world.  It may not seem like enough to you, but your words and prayers lift my spirits and give me hope.
• Dheeraj, who is just one of those people with a great big heart who also has a smile, kind words, and candy! 
• Lastly, to a very special group of people composed of the wisest, kindest, most thoughtful, endlessly loving, and infinitely patient people, my Ravelry family.  You are my tribe.  You always make me feel like I matter and that what I have to say deserves to be heard.
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I think of all of you as the circle of people who stand between me and the dark, scary, bad things and mean people.  My friend Josh said I made him feel bad for complaining about his problems, but suffering is not objective.  Life is so hard, for all of us not just me, and we need each other.  The great thing about love is that you can't use it up: The more you give it there more there is of it.  Love you guys!

The "Good" Cancer

This week has been so emotionally difficult that I haven't felt I had the strength to write about it until today.  I might crack if someone tells me one more time that I have the "good" cancer.  There is no such thing as a good cancer.  It's true that my chances of surviving this cancer are statistically quite high but the chances of me surviving this cancer with my life unscathed are fairly low given how this week has gone.  I should have been spending this week focusing on wrapping up this quarter and studying for finals.  Instead I spent this week fighting for my right to continue in my program in the face of the perceived "cancer" disability, and fighting with the hospital to get my charity care application processed.

It is utterly horrifying to me that people could use cancer as an excuse to discriminate against someone, but that is essentially how this week began.  The faculty told me that they wanted me to take a "leave of absence" -- which essentially means taking off an entire year which is not financially feasible -- because they think, despite assertions from my surgeons, that I will not be well enough to continue.  When I asked the program chair if I could come to class the first week, see how I felt, and withdraw if needed she reluctantly agreed, of course only after I pointed out that there was no evidence of medical necessity and that the school's own policies allowed for this.  A few days later, this Monday, I was told by the clinical site coordinator that if I attempted to go to class next quarter she would refuse to give me a clinical site.  There is more to the story than this and I don't think it would be wise to go into all of the details at the present moment, but it angers me deeply that these two people are using MY cancer to try to get rid of me.

As for my charity care application, I'm reaching a level of frustration that usually results in me yelling at people as though I was speaking in tongues.  I sent in the original application before I even made an appointment with my primary care physician.  I received a call the next day saying that some of the paperwork I had submitted was insufficient so I got what they needed and faxed it to them the next day.  Two days later I called and asked them to confirm that the faxed information had been received, which they did and I was told everything was good.

The day I got diagnosed with cancer, about two weeks later, I went to the financial services office to check the status of my application. They told me it had been closed out as they had never received the paperwork they requested.  Thankfully I still had the paperwork in my bag.  They made a copy and I went home.  Two days later I called to see if there was anything else I needed to do and I was told that they had all of my paperwork and that my application was being processed.

Today I received a call that the paperwork sent to them by their own people was illegible and that I would need to send it to them a third time.  I was also informed that this would put me back in the queue and I would have to wait again.  I reminded them that I'd already submitted the paperwork twice, that both times mistakes were made on their end, and that my surgery was scheduled in less than two weeks.  When they tried to say again that they couldn't do anything I asked to speak to the manager.

She tried to tell me that it was just the way it was and that they needed to "be fair to the other patients."  All the while I'm wondering, "what about being fair to me?"  She said that given what I'd said I'd "most likely" qualify. I can't work on "most likely" and go on faith that it will be approved after the fact.  I finally convinced her to let me email scanned versions of the documents and process the application right away.  If you're reading this blog because you are also going through cancer let me impart to you a bit of my hindsighted wisdom: If you fax something to a hospital billing department, mail it too, maybe a couple of times.

This has possibly been the worst week of my life.  I've been so exhausted from the stress-induced insomnia and my boyfriend and friends are practically force feeding me because my interest in food is nil.  I don't think anyone ever imagines that after being diagnosed with cancer that the cancer would be the least of their worries.  As it stands right now, I don't know if I'll be having surgery on the 17th and I don't know if I'll be returning to school next quarter.  The next ten days of my life may be the hardest thing I have ever had to go through. There is no good cancer, there is only cancer that is relatively not as bad.

Colombian Neck Tie

I made the mistake of looking at pictures of thyroidectomies online and this scene was the first thing that popped into my mind.  I was probably five when this movie came out, but apparently it stuck with me.  I'm not sure why, but I'm mildly freaked out about this surgery which you wouldn't think would be the case for someone who has already been under the knife three times.

I had my first surgery back in 2005 for endometriosis. I was anxious then, too, until a coworker said something very wise: There is no way you could be in more pain after surgery than you are right now. He was right.  Now, though, there's no pain.  There is only this vague feeling of unwellness and a slightly puffy neck.

I think one of the things that bothers me is that I will have to be in the hospital overnight.  With my other surgeries I always made a point of getting out of the recovery room and into the car as quickly as possible.  Having a surgery that requires me to stay overnight feels like things are more serious.

The other thing is that this will be the first surgery where I can't hide the scars. I've got a lot of scars both from surgeries and from being a rough-and-tumble kid growing up.  It's not that I'm vain or anything, but it'll be out there for the whole world to see.

Two weeks and counting...

TKO'd

I've been really tired since the biopsy.  I'm not sure if stabbing the cancer with needles pissed it off or if it's just the stress and all the extra running around but I only have brief bursts of feeling like my normal, energetic self and then I crash. I spent most of yesterday running around trying to sort things out with DSHS, the college, and the hospital.  Last night my boyfriend and I were sitting on the sofa and things sort of went like this:

Me: "Are you hungry? Maybe I should start dinner."

Him: "Yeah, I could eat."

An hour and a half later...

Me: "Oh crap, I fell asleep, sorry."

I'm not sure if I should worry about this, or about the fact that most of the time I feel light headed. I'm hoping this is something that will magically go away after the surgery.  We ended up going out for pizza instead of making dinner which always makes me feel a little guilty because dining out isn't really in the budget.