Archives for August 2018

I just passed the 3 month mark after my surgery for throat cancer caused by the HPV virus back in May. In a way it feels weird – like it’s just a distant memory and I think – did that really happen?  In other ways my life is still somewhat affected by it as you’ll read below.  If you’re new here and are interested in how it all began you can catch up from the beginning here.

Here’s the latest update…

My Throat

I still feel something in the back of my throat when I swallow.  I compare it to when you eat an apple and a piece of the skin gets caught – it just feels like there’s always something there.  I imagine this is just scar tissue and still in the healing process.  If that’s all it is then it’s totally liveable this way.

My Neck:

Because 2 lymph nodes on the left side of my neck tested positive for HPV cancer, the surgeon had to take out a lot more for testing.  While I still look like my neck was slashed, it definitely is healing.  The line is still red but it’s definitely getting better.  I put Aquaphor on it daily and sunscreen when I’m out.  Sometimes  when out I also wear a bandanna or light scarf around my neck  – to hide it from the sun.  But honestly I’ve been pretty lax about it mostly relying on my hair to cover it up.  If anyone has a cooler idea for neckwear let me know!

The left side of my neck is also still numb because they had to tie off the nerves.  This doesn’t bother me at all.

My Knee & Ankle

About a week and a half after surgery I still wasn’t eating a lot and would sometimes get light headed.  One  morning I popped out of bed really quickly to go to the bathroom and blacked out / fainted on my way.  I must have twisted my leg and ankle on my way down.  There’s still a discomfort and slight swelling near my ankle.  I notice a discomfort in my knee when I’ve been sitting too long or if I have to kneel down.

My Weight

I initially lost about 11 pounds after surgery and for the most part (give or take a pound) I’ve maintained that weight.  I feel like this is my ideal weight – I was gaining some weight in the past few years and now I dropped a size and my clothes fit more comfortably.  Now I need to focus on strength and toning – zero muscle tone! 🙂

Food / Eating

While I’m not as crazy strict as I was when I was first diagnosed, the food and the way I eat has become a lifestyle.  I still haven’t eaten red meat or cheese and avoid sugar and processed food as much as possible.  The food I eat is well thought out and intentional – not just grab and go.

I make sure to eat blueberries daily as well as my shot of Apple Cider Vinegar and drink at least one cup of green tea.

The most noticeable changes in my diet have been eliminating cheese and Tropicana Orange Juice.  I used to have both of these daily.  Cheese was my favorite food and it wasn’t until I eliminated it that I realized just how much of it I ate!  As far as juice goes, I would drink it now if it was freshly squeezed and watered down but for the most part I just drink water all day.

I noticed I can’t taste as well if something is really cold or really hot and everything seems to need more salt.  Still trying to work that one out when I cook!

Doctor Visits

My last follow up was sometime in June.  I go back in September for another Pet scan and follow up visits with my doctor, clinical study team and speech pathologist (to check on swallowing)

My Mindset

I’m still really positive, but have noticed I’m back to letting things get to me, and getting myself worked up – whether it’s dishes left in the sink or getting annoyed when the bunnies jump on the couch (I”m sooo not an animal person!).  This tells me I need to reread Louise Hay’s book You Can Heal Your Life and start forgiving and releasing more.  I also stopped sketching and don’t listen to George Lopez comedy as often as I did months back.  I definitely want to make these two things more of a priority again – creativity and laughter!

My Business

Back to normal!!  I didn’t book any photo shoots in May other than one I had 2 days before surgery.  I had other work I could do at home from my computer and then started booking shoots again starting in June.

Medical Bills

There is so much paperwork and mail!  Bills from the hospital and doctors as well as paperwork from the insurance company for each individual visit or procedure.  We have a high deductible with our insurance so I’m still reconciling and paying things off.

I’ll give another update sometime in September after all of my follow ups.  As always if you have any questions please let me know.

To start at the beginning of my HPV Journey, you can read this post first but if you’ve read them all, let’s continue with recovering at home.

It definitely felt good to be home from the hospital – to be able to wear all of my own clothes and  sleep in my own bed.  I spent a lot of time in bed for the first 2 weeks after surgery!!

My throat was in a lot of pain – just as my doctor had warned.  I have a high tolerance for pain as well as not loving to take medication so I rested a lot.  I gave myself permission to rest!  That being said, the day I got home it was business as usual and I found myself folding laundry!!  What was I thinking?!?

My routine consisted of taking the prescribed meds daily (an antibiotic, a non steroidal anti inflammatory pill and  a prescribed mouth wash), Tylenol Regular Strength every 4 to 6 hours, drinking green tea, green juice and chicken broth and eating unsweetened organic apple sauce.  With this diet it’s needless to say I lost a lot of weight – 11 pounds to be exact!

The pain was tolerable for me after the Tylenol kicked in.  As it was wearing off though,  it of course worsened.  I would feel it not only in the back of my throat but also shooting through my ears.  According to the post-op paperwork this was normal.  I couldn’t eat or drink while in this state but laying down seemed to do the trick to ease it a bit until it was again time to take the Tylenol.  This usually took about 20 minutes.

My neck had the wound from the surgery.  While it didn’t hurt, it definitely looked Frankenstein-esque and I had to be mindful of how I slept.

My tongue also hurt and was swollen from the clamp that was holding it down during surgery.  It somehow affected my taste buds – anything I tried to eat just didn’t have the full flavor I remembered.  I also couldn’t eat or drink anything too hot or too cold.  I worked on graduating to more solid foods like mashed potatoes or even smoothies but even that was painful when swallowing.  I believed my body would heal – it naturally wants to heal so I knew it was all just temporary and each day would be better and better.

While in bed I did a lot of reading and listening to inspirational audios.  Anything by Louise Hay was my go to.  I also did some sketching.  My husband had to take over the cooking and mostly everything else as I wasn’t able to drive yet.

My BFF Pam came to visit a couple of times but I could only muster up enough energy for about an hour or so before I had to get back into bed and rest.

At this point I still wasn’t telling anyone about the cancer or surgery- not my girls, my mom, clients, friends or extended family.  I didn’t book any photo shoots for the remainder of May and only did work I could do at home at my computer once I was able to get out of bed for a few hours.

Then Mother’s Day weekend came up – how was I going to hide this from my mom?!?

We ended up going over to her place and ordering in – I definitely couldn’t cook – or eat for that matter!  I wore a turtle neck to cover up the wound on my neck and I timed it so that we’d be at her home during peek Tylenol hours so I could at least get through eating soup.  She said I looked sick so I told her I had a soar throat.  Her reaction – “don’t kiss me – I don’t want to catch it!”  I had to keep myself from laughing – no worries mom – you won’t catch what I have!! 🙂

On the morning of May 15th I got out of bed quickly to get ready for my follow up appointment and blacked out / fainted for a minute on my way to the bathroom.  I was fine except must have twisted my knee and ankle on the way down because it hurt when I got up.

My husband came with me to the followup to hear the results of the lymph node tests.  I wasn’t stressed – I knew it would be ok.  I was visualizing this meeting and playing it over and over again in my head since I was first diagnosed

My doctor wasn’t happy about the weight loss and was surprised I still had so much pain when swallowing.  I explained how I was taking the Tylenol and went over what I was able to eat.  He had a puzzled look on his face  and said the Percocet he prescribed should have been helping with the pain.  What Percocet?!?  I was taking Tylenol…Regular Strength!

On the day I came  home from the hospital we stopped at the drugstore to pick up the prescribed meds – an antibiotic, a non steroidal anti inflammatory medication, a mouthwash and there was also a pain killer – OxyContin.  There was no way I was going to take that!!!  As I mentioned before I have a high tolerance for pain and I’m not into drugs – prescribed or otherwise so I left them with the pharmacy.

My doctor was shocked!  His facial expression was amusing to me – totally dumbfounded!  He said in all his time as a surgeon he’d never seen or heard of anyone not taking the prescribed pain medication after having robotic throat surgery.  Well now he has!! 🙂

I also had to meet with the speech pathologist and a nutritionist.  They were all on me about the wight loss.

The result of the followup – ALL GREAT!!!  No further treatment necessary – just as I suspected!!

Now that I was in the clear I felt comfortable telling my girls, my mom and even some friends.

My girls were cool about it because again,  I was cool and chill about it.

My mom was another story!!  She was in complete shock – 2 fold – one for the fact that I had cancer and also for the fact that I was able to hide everything for all of those months.  Well it was all out in the open now!!

Soon after the follow up visit I had a complete mindset shift.  I was done and bored of laying in bed and feeling like a patient.  I could immediately feel the shift in my body and I was able to start eating more solid food and living my life beyond the confines of my bed.

If you have any questions, post in the comments.  Happy to help if I can!

Unlike most cases, the source of my HPV cancer was in my throat at the back of my tongue and NOT in my cervix.  I had 2 lymph nodes on the left side of my neck also test positive for HPV.  Fortunately everything was operable!

My surgery was a two part procedure.  They were taking out the tiny tumor in the back of my tongue as well as doing  a neck dissection where they remove a bunch of lymph nodes near where the original ones were found to test and see if it spread.  My doctor said to expect a very soar throat, numbness on the left side of my neck due to tying off the nerves and also I would have a drain inserted in the back of my neck for the fluids.  Eeeek!  A hole in my neck?!?

May 4, 2018 – Surgery Day!!! 

I had to be at the hospital at 5am on the day of surgery so I had my friend take my girls to school, my sister pick them up, as well as make dinner for them.  Since I wasn’t telling my mom, I told her I had a full day photo shoot and may not speak with her that day.  She bought it! 🙂  My husband drove me down and planned to be there all day.  It was going to be  a 5 or 6 hour  procedure.

**Tip – If someone is going with you have them bring something to keep them occupied all those hours.  My husband brought his computer to do work.

When your surgery is first thing in the morning there’s no waiting – they start prepping right away.

 

It’s all the usual things like paperwork, changing into the hospital outfit, urine test, meeting and speaking with the surgical team, and getting the anesthesia started.

**Tip – Bring up any concerns you have NOW with the anesthesiologist and your surgeon.  I warned the anesthesiologist that I didn’t react well when I had the 2 surgical biopsies – I was nauseous and threw up so they put some kind of patch on my back shoulder to help with the nausea.

Once I changed into the surgery outfit and got the preliminary paperwork done I was moved into another room to meet with my doctor and anesthesiologist.  My husband was already tired and we barely even got started!!

My doctor discussed giving me a feeding tube while he was in there doing surgery, anticipating I’d have trouble swallowing afterwards.  I told him I really didn’t want it but we compromised to have it in for just  one day.

Two friends that had a similar procedure warned me that after surgery my neck would be really stiff and I wouldn’t be able to open my mouth – my head would feel like it was in a vice.  This was because I was having robotic throat cancer surgery and there would be  a. clamp  to keep my mouth wide open and my tongue pressed down while the robot and surgeon did their thing..   Yes this all sounds so crazy but thank goodness for advanced technology right?!?    That didn’t freak me out – nothing really did.  I have to say I was really calm.  This was the 3rd time I was at the hospital within a month and  a half so at this point everything seemed routine.

Once I got  all of my hair stuffed into the little cap (a feat in itself) we were ready to head off to surgery!

One thing that struck me as odd  and amusing was the way I was brought to the operating room.  It wasn’t like how you see in the movies where you’re lying in a bed and they wheel you into the room.  I WALKED down the hallway with some of the surgical team. Weird, right?!?  The operating room was extremely bright with a long white table in the middle just waiting for the patient to lay down on.  There’s so much going on all at once – strapping in my legs,  adjusting the clothes , connecting me here and there, needles in both arms, computer screens and bright lights all around.  But once they gave me more anesthesia… I was out!

Recovery 

Hours later (which felt like minutes to me) I woke up in the recovery room.  The nurse looked at me and said I was done and out of surgery.  I noticed I didn’t have  a feeding tube.  I also didn’t have a stiff neck – I was able to move it from side to side.  I opened and closed my mouth without a problem.  And…I wasn’t nauseous!  Did I really just have surgery?!?  I couldn’t believe it!  My first words were “That’s it?!?”

**Tip – This goes to show that everyone’s surgery is different and everyone will have different reactions.  No need to freak out by what someone else experienced.

Before moving me to my room, my husband and doctor came to see me to tell me everything went well – he got everything out that needed to come out and he decided not to give me the feeding tube after all.  Honestly I was pretty drugged up at the time (and feeling really good and giddy)   I didn’t really remember much of what my doctor said which is why it’s good to have someone else there to take notes and listen.  The results came back right away with regard to my tongue (all clear) but I’d have to wait until my follow up visit in a week and a half to find out the results of the lymph nodes that were removed  from my neck.

I was then brought to my room in ICU Stepdown (not as critical as ICU).  I was sharing it with another woman.  There was zero privacy other than a curtain  between us so we could each hear everything.  She turned out to be really cool and we quickly became Facebook and Instagram friends.    You just never know where you’ll meet people to connect with!

One thing I noticed was that I was in a different gown than I was in when I was brought into surgery!  I guess it makes sense that you get all messy and bloody in there but what was the procedure for getting me changed I wondered?  I tried to imagine it and thought it could be a funny scene in a movie – the whole experience was so surreal!  I quickly put on the underwear and pajama bottoms I brought from home.  It felt better to at least be in some of my own clothes.

It was like Grand Central Station in that room around the clock – constant monitoring, taking blood – (MORE NEEDLES) and medication.

**Tip – Each time the nurse came around with medication I questioned what it was.  If it was just something extra like stool softener or an antacid that I didn’t feel I needed  – I refused it.  Be sure to ask about the meds and write it all down –  it’s hard to remember everything.  Know WHY you are taking it.  

I supposedly have “bad veins” (whatever that means!) so the nurses had a hard time getting the needles in to take blood. One nurse tried 3 separate times without success.  In a very nice way I told him he was done.  I got the head nurse to do it instead who was able to get it in first shot.  You need to speak up for yourself!  I had so many bruises on my arms I looked like a junkie!

The hospital food was disgusting and there was no way I was going to eat it.  Surprisingly the food they wanted to give  me had sugar in it.  CANCER LOVES SUGAR!!!  What were they thinking?  There was a Wholefoods nearby so I had my husband pick up sugar free organic apple sauce, green tea and coconut water.

**Tip – You have to be your own advocate for everything – even food!  Bring your own healthy options!

When my husband left I tried to sleep but I was  too wired.  Instead I read, listened to inspirational audios and did a lot of writing.  I came up with a bunch of  ideas for blog posts and projects. The ideas were literally flying out of me!  I was so in the flow!  I wrote in my journal, on a napkin and whatever else I could find.  I saved everything and recently went back to read it – it was pretty illegible!

The next day my husband came back with my girls, sister and nephews.  Party time!

None of the kids knew the real reason why I was having surgery.  The “C” word was never brought up.  I just told them I had something on the back of my tongue and neck that had to come out.  When they got there I knew they would need to be occupied so I sent them with my sister to Wholefoods to pick up lunch.

I called my mom at our usual 11am daily call time.  Fortunately no one came in to prick me with needles or give me more meds so I was able to get through the convo relatively quickly and easily without giving away where I was.  I was afraid she would notice my newly formed lisp which was happening because my tongue was swollen from the surgery – but she didn’t.

It’s funny to observe kids.  They can make any situation into an adventure.

I was so chill about what was going on that they just fed right off of that energy and were pretty much oblivious to the fact that they were in a hospital room.  At one point I had to remind them that this wasn’t a restaurant after getting requests like “could we get paper plates for our sandwiches?” and “can you ask them for vanilla ice cream instead of that strawberry one they gave you?”  Uh, NO!!!

After they left my BFF Pam came to visit.  She was one of the only friends I told about what was going on.  She’s the best – even brought me my favorite dill pickle potato chips for when I was feeling better.  She was the one I was able to tell everything to.

During the time Pam was with me, we did “laps” (at a snail’s pace) around the hallways as I was instructed by the staff to get up and move around.  While we were “exercising”, they moved me into a different room.  I graduated out of the ICU Stepdown to a regular room – with a new roommate who had the TV playing loud reality shows the whole time!

The benefit of this new room was that I was quickly getting better and didn’t need to be monitored as closely as the previous day – which also meant…LESS NEEDLES!!!  Woo Hoo!!

Mother’s Intuition

Wanna hear something freaky?!?  I get a call that evening FROM MY MOM!!!  She NEVER calls me at night!  Was I going to be busted?  She called and said she had a strange feeling come over her that something bad was going on!!!  She asked where I was and I told her I was in bed.  I just left out the part about being in s a HOSPITAL bed!!   Somehow I managed to convince her that she was crazy and worried too much.  Whoa – that was close!

The next morning I was in the clear to go home.  All they needed to do before discharging me was to remove the drain from my neck which sounds gross but didn’t hurt at all.

My husband picked me up, we made a quick stop at the drugstore for the meds and I was home before noon.

When I walked in the door I was greeted with  “mom, what can you make us for lunch?” and “why didn’t you stay in the city longer?  You love the city”  As I mentioned – I did a REALLY good job at downplaying everything.

Maybe too good! 🙂