The past few days have been relaxing and exhausting at the same time.  I have been staying busy with practicing breathing, swallowing, eating and drinking.  I have been in communication with close family and friends that have all been asking similar questions, so I am sure there are a lot of other people that are following my journey that are thinking the same questions.  Here’s a little frequently asked questions with responses.

How’s the place I am staying at?                                                                                                           When looking into places to stay for an extended period of time we first looked into hotel rooms and extended stay hotel places since we would be here a minimum of 17 days.  We then looked at renting a house through Air B & B, which ended up being almost $40/night cheaper than a hotel/extended stay and it’s a full beautiful house!  It’s newly remodeled with an outside patio, full kitchen that includes everything (even a large ninja blender to blend/puree my food.)

What’s the weather like?                                                                                                                       The few days we were here prior to surgery were rainy and cold (40 degrees) all day long. Rob and I planned a 3.5 hour dune buggy tour the day before surgery and it ended up getting cancelled because of all the rain that ran off the mountains.  We were very bummed.

How do I feel?                                                                                                                                              Physically–  I’m at the point now that each day is starting to get better.  Sleeping at night is still difficult and I take each day hour by hour since the pain varies throughout the day. I have been napping during the day as I get exhausted very easily.  Talking, drinking and eating take A LOT of effort and concentration.  The pain in my throat is really bad and my neck is extremely sore.  I ended up having an allergic reaction to petroleum jelly  (what I was putting on my scar to help it heal) so now I have a steroid cream to help with the allergic reaction.  The whole left side of my face, ear and neck are very numb and swollen.  I have the worst pain inside my ear too.                                                                    Emotionally- This has been a very challenging experience so far and it is only going to continue for a long time.  I have never been in this much pain, I have never missed like I am missing my children and I have never been more scared for my future than I am right now.                                                                                                                                                   Mentally– I am very grateful.  Grateful that the doctor feels the cancer is gone, grateful I have the most supportive  husband, family and friends that have been by my side every step of the way and grateful that I am alive.  Too many times young peoples lives are cut short for various reasons and I feel very fortunate that I am going to continue living my life.  Of course I get upset at times as this is going to be a major life adjustment, but I am not willing to let this bring me down.

What am I eating?                                                                                                                                       Eating and drinking is a really big challenge for me because it is VERY difficult to swallow.  I can eat soft foods and purees right now and I can drink anything I want.  Eating and drinking thicker liquids (smoothies, pureed juices) is much easier to swallow than drinking water, tea, coffee.  Milkshakes are not good for me because I have a lot of congestion and the milk increases that.  This morning I ate a bowl of really creamy oatmeal and that took 55 minutes.  Needless to say all of my meals take about that long because it is so much work/effort/energy to swallow and then I am exhausted!

When do I start therapy?                                                                                                                          I saw a speech therapist at the Mayo Clinic on Thursday.  My session lasted about 1.5 hours.  For about 45 minutes of the session, she had a scope up my nose and down my throat watching how my vocal cords moved making various sounds, watching me breathe, swallow, drink water, drink a thicker juice, eat apple sauce and even take 1 bite of an oreo cookie.  I struggled getting some of those things down and when it doesn’t go down correctly, I cough.  The speech therapist told me that’s good news that I cough because that means my reflex is very good that I won’t let fluid go down the wrong way. Since some things are going down the wrong way, causing me to cough, I now need to learn a new way to swallow.  For now, I just have to practice, practice, practice to build up my muscles using a different swallowing technique.  It would be so much easier to just not eat/drink until I am healed but that’s not an option!

How’s Bobby, Brody and Natalie?                                                                                                          They are as happy as can be!  Rob and I are so fortunate to have such a wonderful family on both sides because everyone has really pulled through.  It really takes a village to raise children and this is the perfect example.  Our kids are just so happy that they are with different family members on a rotating basis.  Bobby’s schedule of going to preschool and speech have remained in place.  In addition, a few days during the week Bobby and Brody are going back to the in home daycare they were going to when I was working and they love it there.  Natalie is staying with whoever is staying at our house enjoying some one-on-one attention that she deserves!  My heart sinks when I see Natalie because she has already changed so much.  Today she turned 3 months old, which is the official time the baby leaves the newborn stage and turns into an infant.  SEE it happens SO FAST!  We FaceTime the kids every day, normally twice.  They boys continue to be maniacs and Natalie just watches. Bobby  is so sweet and always asks when we are coming home and Brody being the charmer he is, blows kisses.  They just melt my heart.

  
Can I talk?                                                                                                                                                     Yes.  I have a very, very low whisper.  It is very breathy, difficult to pronounce some words and some sounds do not come out.  At this time, no one can say what my voice is going to sound like.  I just keep being told everyone is different.  I am supposed to talk frequently to use the muscles so I have been having good conversations with Rob and FaceTiming often.  I get fatigued quickly in conversations, but then I rest and try again later.

How’s Rob holding up?                                                                                                                              He’s my rock.  Without him by my side I wouldn’t be where I am today.  He has been so strong for me.  Extremely caring and concerned.  Encourages and pushes me when I need it and doesn’t question when I am in pain or need to sleep.  He has made me feel like a princess even though I definitely am far from looking like one.  He has taken care of every meal, brings me my pain medicine when needed, takes me out of the house to get moving around and returns as soon as I feel weak and he has even done my laundry!  (Rob has NEVER done laundry and even in college he used to pay to have his done.  He HATES laundry like I HATE needles.)  At the age of 30 (Rob 32), I never thought we would be in the predicament of “for better, for worse, in sickness and in health.”  We are in this place right now and there is no one else I would ever want by my side.       

 Coming up: My mom flies back to Scottsdale Saturday afternoon and Rob leaves Sunday morning.  My mom will be staying with me until I am able to return home.  Return date at this time is still unknown.