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Friday, September 1, 2017

Cancer Recovery Q&A

I put together a little Q&A of some of the common questions I am currently asked about my health.  I never knew people cared about some of these minor details, but as I have no filter or modesty, I am happy to share (or overshare as the case may be).

This should be fun.

Q: How are you feeling these days?
A: I am good!  I *think* I am 6 months cancer free now, but I am waiting to have my appointment rescheduled at MD Anderson because I missed it due to the storm.  I am feeling more energized, am exercising regularly, and am eating more and more varieties of foods.  All good progress. I am looking and feeling good.

Q: How did you even know something was wrong to begin with?
A: I think this question is asked so often because people want to know if they are experiencing similar symptoms.  I think for this type of cancer you would know pretty much immediately.  I had a small white spot appear under my tongue when I was pregnant with Violet and I headed straight to the doctor.  I feel like anything unusual in your mouth raises immediate red flags.  Long story short, they biopsied it 6 years ago and said I was fine and it would go away.  Then last year, the spot, which never went away as promised, started hurting so I went back to the doctor, had two more super fun biopsies (never have pieces of your tongue removed - it is awful) and landed myself at MD Anderson with an aggressive cancer treatment program.  So, we kinda caught it early but not really if that makes any sense.  I wrote about my initial diagnosis in detail here.

Q: How did you talk to your kids about your cancer?
A: Openly and honestly.  Once I was formally diagnosed, we told them and from then on we kept them informed.  Jeremy was 8 and Violet was 5, but they had a right to know, and we could not hide the fact that I was totally incapacitated, bald, and tongueless even if we wanted to do so.  We gave them facts in simple terms.  We did not sugar-coat, but we did not share needless details either.  MD Anderson gave us a kid-kit that included a DVD that explains cancer, surgery, chemo, and radiation in detail - for kids by kids.  It was really cute and helpful.  It helped that I was in Houston for the gruesome parts (surgery and recovery, actual treatment), but we openly included them in my home care.  They helped me tube feed, they helped change the bandages on my arm, and they did my swallow and neck exercises with me.  We had a "party" when I cut my hair off to make it less scary and sudden for them.  Jeremy sought counseling at school every week and checked out books on cancer from his school library.  Violet took it all in stride and enjoyed playing Doc McStuffins while she flushed my PEG tube with water.  Kids can handle a lot more than you think they can.  What scares them is mommy and daddy whispering and sneaking around hiding things from them.  Their imaginations and fears are usually much worse than the real thing.
Jeremy changing my arm bandage.
Vi flushing my PEG tube.




















Q: Did they really just yank out your PEG tube?
A: Yes.  It was horrifying.  From the time my name was called in the waiting room to when I got back to Brian and the kids, less than 10 minutes elapsed.  I went in, they made me lay down and tucked blankets into my clothes ("it is very messy" the nurse warned), and the doctor told me it will hurt A LOT so to try not to hate him.  He told me to take a deep breath, got a good grip on it right where it entered my stomach, and pulled.  I closed my eyes, because, ew.  It was the single most painful 20 seconds of my life.  He held a wad of gauze on my stomach and told me to count to 30.  Around 18, I finally took a deep breath and it started to hurt less.  By 30, it was a slight ache.  By the time they wrapped me in thick bandages, I was fine.  No pain medicine, no stitches. They told me to change the wrapping every day for a week and it would be healed.  Like magic.  Here is my initial post on why I even had the tube.  I kept it for 10 months.
With PEG tube (it was SO long - like a foot - it is tucked in my pajama pants in this photo)
Q: What does the hole in your stomach look like now?
A: Kinda like a second belly button.  :)  I am not sure how it will continue to heal or what it will look like in 5 years, but right now it looks like this.  No pain or discomfort at all.

No PEG Tube - that is not my belly button
Q: Did you have HPV and get your cancer from that?
A: No.  I was tested for it (HPV has been known to cause some kinds of head and neck cancer) during my final biopsy and it came back negative.  I am of a generation when HPV was not really a known thing, so I never received a vaccination or whatever for it.  However, it turns out HPV was not the culprit in my case.

Q: You said you never smoked, but did you use meth?  (Seriously. I have been asked this more than once!)
A: No. No.  Don't stereotype my East Tennessee roots, now.  I never smoked, used meth, used any form of tobacco, or had prolonged exposure to second hand smoke.  The doctors have no idea why or how I got oral cancer.

Q: Have you cut your hair recently?
A: Nope.  I can't bring myself to take scissors to it.  I think people ask this since it is shorter in the front - I have had specific questions about my bangs.  No.  I have not cut it since chemo at all.  It grew back uneven, with the back coming in first so I looked like a middle aged man with a receding hairline for months. It was super cute.  Now, I am trying to make my mullet look less mullet-y with headbands and bobby pins.
there are like 15 bobby pins holding it back - and you can see my neck discoloration here as well
Q: Are you planning to keep your hair short?
A: Not at first.  I don't know how to properly explain this, but I need to complete the circle.  Losing my hair was the first of my many physical transformations from all this, and it is the only one that will be completely reversed - IF I let it grow back out.  I think I need to do it for me.  I need that closure, silly as it may sound.  But, I am not at all against cutting it short again once I close that loop.

Q: Why is your hair curly now when it was straight before?
A: They are commonly called "chemo curls" and apparently, after chemo many people grow curly hair for up to two years before it starts to go back to its normal texture.  It is something scientific, but basically the chemo drugs are growing out in the actual hair follicle - weird, right?
Curls!  Some people have them really tight, but mine are more just flips.
Q: What kind of surgery did you actually have?
A: I had a hemiglossectemy (partial removal of the tongue).  They removed a little over half my tongue (all the way down) and a bunch of my lymph nodes. They rebuilt my tongue with muscle from my arm and then fixed my arm with a skin graft from my thigh.  It was fun.  Here is my surgery post where I am honest about how much it sucked.  

Q: Does your arm hurt?  Can you feel it?
A: It does not hurt, per say.  It is sensitive.  I cannot feel it when someone touches the scarred area, but if I were to hang my purse or a tote bag on that part of my arm, it would be very uncomfortable.  Upside - look at how good it looks!  This is a comparison picture from one month after surgery to today, which is 10 months post-surgery.
1 month post-surgery
10 months post-surgery (and really pale apparently)





















Q: Does your leg hurt?  Can you feel it?
A: No pain - at all.  I forget this one is even there.  The kids can literally kick me right in this scar area and it just feels like my normal leg.  Since this one was just for the skin graft, it was a much shallower cut than on my arm, which was like taking an ice cream scoop to my forearm and digging in.  I can feel it and it feels totally normal.  It is also starting to fade nicely.  Such great progress since the fateful blood skillet incident the day I got out of the hospital (*embarrassing memory*).
10 months post-surgery (tube, blood, & skillet free!)
1 week post-surgery (gross feeding tube & blood skillet)





















Q: Did chemo and/or radiation suck?  My uncle/cousin/former roommate said it is not too bad.
A: Yes, it sucked.  It sucked a lot.  See exhibits A (chemo) and B (radiation) for my in-the-moment thoughts.  And I am super happy your uncle's brother's former roommate got stronger and healthier when he/she had chemo.  That was not my experience.  At all.  At the time, it was very difficult for me to come to terms with the fact that it was so hard, and I had to have a social worker help me to let go of my guilt and face my reality.  Hearing it was so easy for other people, while the intention is always so pure, does not help in the slightest and made me feel even worse about how I felt.

Q: Why is your neck a different color from the rest of your skin?  
A: Ugh, I hate it.  I am so self-conscious about this part for some reason.  It looks like my neck is dirty all the time.  My radiation was directed at my head and neck area, so it caused severe burns to my entire neck.  See gross photo.  Just like a sunburn, that skin healed eventually but left behind a super dark "tan" that is slowly fading as the months pass.  Once a week, I scrub my neck pretty intensely (carefully because it is still tender around the scar) and slough off the layers of dead skin.  So gross.  I will be really happy when that nonsense is over.
At the height of my radiation burn - and look how puffy I still was!
Q: Why is your neck puffy?
A: I have lymphedema in my neck.  It is a condition that affects a small but significant percentage of people after surgery and radiation.  They removed many of my lymph nodes in surgery, then radiated the heck out of the rest.  This has left my neck devoid of the nodes that effectively move fluid around that part of my body.  The fluid now collects and causes that ugly puffy spot.  I use massage (30 minutes every night) and a compression garment (aka face bra and hard foam disk) when I sleep to combat lymphedema.  I am seeing improvements, so hopefully I can stop those soon - that face bra is seriously awful.  Tie a bra around your head and then put on a neck brace.  And then try to go to sleep.  Suuuuucks.
massage instructions from MD Anderson
wearing the face bra to bed - sexy!





















Q: When will your speech get better?
A: Never.  My sweet husband asked the speech therapist at our last appointment when I would sound like myself again. She kindly said that I will never sound the same again.  Over half my tongue was removed and replaced with arm.  Arm tongue is not the same as real tongue.  My speech has improved a ton and I am so happy with it, but I will always be compensating for the arm tongue when I talk.  It is most noticeable when I public speak or read aloud - I think because I am more conscious of it in those moments and it causes more dry mouth (see next question).

Q: Do you have taste buds?
A: Yes.  I can taste certain things well (salt, sugar, peanut butter, strong flavors) and others alright (butter, starches, vegetables) and some are severely altered to the point of being unrecognizable (most fruits, cinnamon).  I am SO happy I can taste a variety of things, but I am sad that strawberries taste like metal and cinnamon tastes bitter and awful.  I don't understand the rhyme or reason at all.

Q: Can you eat normally now?
A: Define 'normally' for me.  I can chew food on one side of my mouth (I have no teeth on the bottom of my left side and the entire left side of my tongue has no feeling, so eating over there is not really an option).  As long as I can place the food on my right side and it can stay together enough (rice is a nightmare, for example) for me to chew and swallow, I am good.  I have really bad dry mouth since my arm tongue does not produce saliva, so eating anything dry or large is a no-go.  I really struggle with chicken and all bread products.  I either have to drink liquid to help it go down or pour gravy or something on it to make it moist.  Swallowing is the hardest part.  I also cannot open my mouth very wide.  Basically, I cut everything into small bites, add moisture to all my food, and drink milk or other thick liquid to help swallow each bite.  Eating is a long, tiring process, but I am eating!!  Drinking is strange - I have to sip drinks and swallow a little bit at a time.  I cannot simply take a gulp of a liquid - I would choke.  My tongue cannot control the swallowing motion that quickly.

Q: Aren't you so excited you lost so much weight? You look great!
A: No.  And no I don't.  Did I need to lose 40 pounds?  Because I never thought so.  None of my clothes fit and I don't have money to buy new ones.  I am desperately trying to gain weight, but it is not working so far.  I understand people are being nice when they say this, but I miss having boobs and a butt and feeling at home in the natural shape of my body.

Q: Does your tongue work normally now?  Can you, like, kiss and stuff?
A: This made me laugh when I was asked, but then I realized probably a lot of people are wondering but don't have the guts to inquire.  Yes.  So, the arm they cut off was really deep and included muscle.  That muscle they matched up perfectly with the blood vessels of my existing tongue muscle.  This means that the arm part of my tongue is alive.  I can move it and I am gaining more control over it.  However, I have no feeling in it at all.  I cannot stick it out of my mouth.  My tongue is tethered now and cannot go out past my lips (I cannot even lick my lips). Sooo, traditional kissing with tongue is not really a part of my life anymore.  Umm, I cannot lick anything nor can I feel 60% of what happens in my mouth.  I also can't feel my neck properly where my big scar is, so no neck kissing either.  I guess Brian can kiss me there, but I would be unaware it was happening.  Yeah, that part of our relationship is different now..  It is what it is.
best I could get - this is my tongue - I am sticking it out as far as I can - the white part is the arm part
Q: Will you get new teeth to replace the ones they pulled?
A: Good question.  I am not sure.  I can.  They said they can make me a bridge and I can wear that and have teeth on that side (they pulled my 4 back bottom teeth to rebuild the floor of my mouth and tether my tongue down).  However, my tongue is still too big and takes up that side of my mouth where my teeth would be.  So,  I would first have to have my tongue contoured, then I could get new teeth.  But, I have no feeling on that side of my mouth, or that side of my tongue,which leads me to wonder if all of that contouring and teeth-building is even necessary.  I have not made up my mind yet on that one.

Q: Does insurance cover everything at MD Anderson?
A: For some reason insurance questions keep coming my way.  I think there is confusion over the issues I had with FMLA and that somehow got tied in with insurance.  All of my procedures were covered by my health insurance through Ole Miss.  I had to pay my deductibles for doctor visits, hospital stays, and prescriptions, but I hit that $5000 limit in like a minute.  FMLA (Family Medical Leave Act) was my issue.  Since I had not worked at Ole Miss for a full year, I did not qualify for FMLA benefits, like donated leave.  I had obviously not accrued enough time to take 6 months of paid leave, so I went on leave without pay.  I actually had to pay The University of Mississippi $2000 every month in order to keep my health insurance.  So, I received no paycheck and instead paid my employer to cover my insurance premiums.  Once I hit the 1 year mark (November 18th), I was flooded with donated leave from my wonderful colleagues at work who gave of their own time and at that point I started receiving paychecks again.  Thank goodness.  I returned to work January 30th and did a few weeks of half-days, then went full time again in mid-February.

Q: Since the cancer is gone, you are cured and fine now, right?
A: I wish. Umm, yes? Maybe?  I hope so.  The first two years pose the biggest risk for recurrence as there is always the possibility that some cancer cells were so tiny they were missed despite all the technology we have these days.  It happens.  I am tested every three months for two years for this reason.  After that, it will be every six months for a few years, then once a year, then every other year for the rest of my life.  Some of my symptoms and side effects will fade completely, some will just be old scar tissue, and some (like my speech and taste) will never fully heal or ever be what they were before.  But, yes, I am "cured" and "fine", technically speaking.  I guess.

Q: Aren't you glad that is all over now?
A: This may not make sense to someone who has never experienced cancer themselves or with a close loved one.  It is never "over".  I have a high risk compared to others of getting cancer again.  I will never be the person I was before I had cancer.  I will always speak with a lisp, I will always have problems swallowing, I will always eat best when no one is looking.  I will never kiss my husband in the same way again.  I will never look in the mirror and see the old me again.  But, yes, I am glad.  I am proud and happy and elated with my life and where I am.  But, it will never be over for me, my husband, or my kids.  And every single time we go back for that scan, for the rest of forever, my heart will skip a few beats as I brace myself for the very real possibility my life will be turned back upside down once again. Jeremy still rubs my head every single day.  My hair is his guidepost.  When I have hair, I am healthy.  When my hair falls out, I am sick.  Every day my baby checks my hair for me.  I'm okay for as long as he needs to continue that ritual.

Q: Can I send my friend who was recently diagnosed to you for information/help/questions?
A: YES.  Please do.  I have actually signed up to be a mentor for cancer patients, and i would absolutely love to help anyone else who finds themselves in this situation.  I obviously know the most about my own type of cancer (squamous cell carcinoma located on the tongue), but the process is similar in nature for many types.  Either way, I am happy to help and the emotional/psychological part can be the hardest. Any way that i can turn my own experience into something that can be used for a positive purpose is a blessing.
1 week post surgery (my discharge day) - trach included
this week with my favorite little head-rubbing man




















Thanks for reading this whole thing if you made it to the end!

5 comments:

  1. Thank you, Jeannie! I'm glad you're going to be mentoring. You'll be able to make a positive impact on the people who are feeling scared and alone with this diagnosis - especially the ones whose experience is thoughtful and complicated.

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  2. I wish I'd known you had this blog when you were going through your cancer treatments. Rachel and David never told me about it! I thought of you often and wondered how you were doing. I wrote one on CaringBridge for my husband when he was ill; it was very therapeutic for me and reassuring for our friends and family. Yours is beautifully written and I am so happy you are all together again and have hope for the future. I hope to see you in Hopper-land, i.e. Nashville, sometime when I am visiting.

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  3. So...I love you and I love all of this! I love all of your posts, of course, but this one has the wit that I love so!

    I actually loved hearing all of this because I had most of the same ones- minus the meth one, of course.

    Love you and you beautiful!

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