Dr. Sal Lettieri

In December I had 2 surgeries with Dr. Lettieri. I was able to go back to work in January, but for some reason the area on my neck where the drain was inserted is not healing.  I'm tending to believe Dr. Barr's when he told me my body unfortunately does not heal as most other patients do.  I have bad gene's I think is what he said.

I'm still changing the bandages 3 times a day, the wound gets better then suddenly goes bad again.  I'm not going to let this stop me or slow me down. I'm still not giving up on Nerium, trying hard to be true to myself, reading from a good book everyday and sharing with others.

Insomnia is still a major side effect I'm dealing with.  The sleep doctor wants me to get up every morning at 4:30 am, this is the time I get up to go to American Airlines for work.  However, I only work three days a week....I've tried but not sure I can keep this regime as it is not helping me to sleep.
Dr. Northfelt once asked me "If there was one thing you could have back pre-cancer diagnosis what would it be?" my answer is always "I'd love to be able to sleep or even take a nap!"

My hip is slowly deteriorating, Dr. Lettieri has given me a name of a orthopedic surgeon who he thinks will help.  I can no longer keep getting cortisone shots, well I can, I just don't want to.  I need a permanent fix not a temporary bandage.  I'm hoping to do this without surgery, so I will go forth with this new doctor and see what he has to say.  If Dr. Lettieri knows him and recommends him, I'm in good hands.

Today I am grateful for options in medicine.

The 'give and take'

He's at the door waiting to hear from us

It's late, after midnight, I need to sleep, but can't.  Not much has changed, the sitting and waiting is so hard.  Today, Cleveland Clinic surgery schedulers called to get me one more appointment with one of the surgeons for Thursday.  Also to make an appointment with internal medicine, and to get all my lab work done.  After I speak with the surgeon on Thursday I will have a better understanding of what exactly they are going to do to me, how they are going to do it, and to make sure my insurance is covering all of this.  I've always said that I believe everything happens for a reason, I know the Lord does not just toss us out into the world without an answer, but sometimes life does throw us under the bus.  Tonight I went in the bathroom and did my ritual of staring at my face and saying to my eyebrow "move" over and over when I had no luck there I did it with my eye "blink" over and over really concentrating with my brain on making my eye blink--it did two times--it is funny to watch me do it, but if a positive mental attitude can help me regain movement, even if just a little then I am successful and it tells me I have the strength to retrain my brain to get those wires reconnected.  One last try with my lip I say "smile" staring at the right side of my lip....I think I may have seen a slight movement...It may not happen today, but I believe when I least expect it, it will happen, I'm not sure how long I'll have to wait.  Sometimes I wonder if Heaven is even listening to me.  Do I need to change my prayers?  Tonight after my facial ritual, I sat on the floor of the small bathroom turned off the lights and prayed.  I know God has heard every prayer, Heaven often surprises me when I least expect it, because tonight I felt the spirit--yes, right there on the floor of a hotel bathroom.  Who would ever expect to get an answer to prayers while sitting on the dirty dark floor of a hotel bathroom?  Not me.

Today, I needed to go out and get some food for my hotel, a little girl was with her mom and grandmother, she was about 4 or 5 she pointed right at my eye as I walked in and said "hey, what's that on your eye, do you have an eye?"  Her mother was mortified, but I stopped her and said "Oh, I'm OK I just have a little boo boo, so I'm keeping it covered"  then she proceeded to show me her boo boo on the heel of her foot, the band aid was coming off, and she then told me "it's not a real boo boo, it's just for play"  I started to smile then realized that doing that would start a whole new conversation, so I just shook her hand and told her to have fun with her mom and grandmother.  They apologized, I told them they had nothing to apologize for, I appreciated her asking instead of staring--her little brain is learning and this is her way of processing boo boo's--they were very kind and apologized again as they walked away.

It's interesting how the Lord gives me sight when I can't see, the sight he gave me today was exactly what I needed.  He took  my doubt and replaced it with truth, He took my fear away and all I could feel was Him.  He takes me as I am, takes me by the hand He sees into my soul and He takes just what I need, so many times when He is refining me, leading me through the bitter sweet, I'm trusting him to make me complete.  I may never be the same Monya as far as my physical appearance, I know He sees my heartache, but He sends His sweet grace to help relieve me of those days when I feel my HOPE fading.  I know this 'give and take' that the Lord seems to be guiding me through over these past few years has blessed me to see that 'giving and taking' away are exactly what I need, to get me through those bitter/sweet times.  I'm hoping through this refinement I am going through now, He sees I am worn out, trying to keep up, and I can be left a lone for just a bit--I'm not sure how much more I can take.  

This is a life long Journey🚩

Yesterday Blake spoke in church, he did a beautiful job speaking about the experiences he has had the last 2 years while serving the people in the Dominican Republic.  I was touched listening to him talk about the power of the Atonement in his life-it seems the best conversion story was his own.  His Spanish is flawless, I love to listen to him.  Someone said to me very non-chalantly "so glad you could be here today" at 1st I thought "what are they talking about? I'm here, every week, what does that mean?" then my thoughts immediately went to "you have no idea how glad I am to be here"  HERE as in here on earth, still alive able to see the success of my son, to hear him speak in Spanish so fluently, to see his passion and love for what he believes in,  "Oh yes, I am so glad I'm here too!"
This morning I woke up, knowing I was going to spend the day at Mayo Clinic, I have this love/hate relationship with that place.  I love it for obvious reasons,  and I hate it for more obvious reasons.  The drive to Mayo was much shorter than I expected, my thoughts were wondering--kinda scary for anyone driving down the beeline highway today--some of the things I was thinking about -- the mountains are beautiful, the dessert is dry and I am wondering who I will meet today.
 The 3rd floor smells like always--of sickness and chemo,  there is a stench difficult for me to stomach, especially when I am so nauseated anyway--as I sit in the waiting area I see, like always sick people, some look really, really sick I wish I could hug them and tell them everything will be OK, but I know just as well as they do there are no guarantees with the VILLAIN.  I'm not there for long, my name was called within a few minutes as I walk into the infusion lab and see it loaded with people today, it made my heart sad for each of them--my nurse today is Allison, she is pregnant--seriously? can she smell what I smell?   I wonder how does that work for her?  So... I asked her "do these smells bother you?" her response "what smells?" WOW what just happened?  it's hard to believe she can't smell the same things I smell.

Linda-Stage 4 Colon Cancer-What a blessing she is to
her family--so happy and positive

Jenny-- stage 1 Breast Cancer--her husband shaved
his head to match hers--they have a 17 month old baby

Dan-stage 4 colon cancer-metastisized to his lung--
so happy and full of life

Sandy--stage 4 extremely rare cancer--going in tomorrow
to have his bladder removed--will have to wear a colostomy
bag for the rest of his life-yet he made me laugh--
 I loved visiting with him

The girls helped me put some treat bags together (and when I say "girls" I mean Kaitlyn and Haleigh Brownlee)  for all the patients in chemo today, after Allison accessed my port and took all the viles of blood she needed I went around to all the patients and visited with those who wanted to talk, gave them a snack bag and was inspired by each and everyone of them.  This is my favorite part of coming to Mayo--these people are facing life threatening diseases yet they smile and are so positive about life--perspectives change, and I loved all the perspectives today.  Jenny is also a patient of Dr. Kreymerman, she and I high fived each other--then talked a little about him--all good of course.  In case you didn't know I love Dr. Kreymerman-- ha ha.
After spending more than an hour and half in the infusion lab, I was off to get my bone mineral analysis, and X-Rays.  I have always wondered why they make me undress and put on the hospital gown, I thought those machines could see through clothes--they can see through clothes at the airport.
By now I have a splitting head ache--I think trying NOT to be effected by everything going on at Mayo, I get the opposite effect--every little thing I see, hear and smell drains me.  I started early this morning, looking at my watch as I wait for Maryann I can see the time is now 2:30, I won't be out of here for a couple more hours.  These are questions I have for Maryann:

1.  Can I see Dr. Northfelt at least once a year
2.  Why am I so nauseated
3.  Why am I in so much pain, legs and hip
4.  Why does everything taste like metal
5.  Why am I having headaches and insomnia

These are the answers I got from her:

✓1.  Yes, I need to see Dr. Northfelt, its not too much to ask, especially since I will be seeing him for years to come, its important for me to have the reassurance from my oncologist once a year.
✓2.  The pain my body is in is causing the nausea
✓3.  The Xray is showing a spot on my hip bone and lower back caused from the osteoperosis,  neuropathy is still in my legs  caused from the chemo--
✓4.  Forgot to get answer about that one--
✓5.  Not sure about the headaches, she wants me to stop taking the Arimidex for 2 weeks and see if they go away, insomnia is part of the process--its not going away.

Maryann is going to call me in 2 weeks to check on me, and get an update about some of the conditions.
I'm also being referred to the Physical Medicine unit at the Mayo Clinic in Phoenix. Maryann told me they will be able to get to the bottom of the spots on my hip and back.   Leaving Mayo today I'm satisfied that all my questions were answered.  I loved meeting all the wonderful patients in the infusion lab, I realized for the 1st time today that this journey is life long--sad but true.

Insomnia freaks me out🚩

As grateful and elated as I am to have my son home with me, if I am totally honest I will say I'm scared to death right now.  I am having a lot of really irregular symptoms,  nausea, INSOMNIA night after night even when I've taken my medicine I still cannot sleep, sort of reminds me of the days I was dealing with chemo and radiation--SORT OF-- headaches, my heart is making extra beats or stopping all together, it's hard to tell sometimes,  the pain in my legs has returned in full bloom, feels just like the neuropathy and last but not least my hip pain has gotten a whole lot worse--these type of conditions make me crazy in the head.   I have this feeling I'm about to be taught a lesson.  Today I went to Mayo for some blood draw, the girl taking my blood could not of been more than 18 years old, she apologized before she stuck me, I guess that should of been my first clue that this was not going to go over very well for me--she stuck my arm and it pinched and burned like no other--I looked down and to my surprise there was no blood coming out into the vile--she said "Is that hurting you?"  My reply was very nicely "uh y y yes darlin' it hurts real bad take the needle out and start over please" by this time my rear end was raised up out of the seat, and I'm pretty sure she could tell by the look on my face I was in some pain, then the cute little nurse said "Oh no, I have a one stick policy, I will get someone else to try"  Thank Heaven for that, I was not willing to go through that ordeal again.  I ended up with 3 sticks to the arms (yes that would be plural) not complaining but the reason why I have a port sticking out of my chest is for this exact reason--NOT TO BE STUCK A MILLION TIMES--even if the needle is the size of a nail head I would rather be accessed and stuck with that then be stuck 3 times by a nurse who looked like she was still in daycare.
I fear that my body is giving in, giving in to the VILLAIN--or am I just getting old and this is what happens?  What ever it is--I say NO, I don't like it it feels weird to be up at 2 am writing about stuff I know nothing about, except that I do know the pain I am in is real,  Next week I will go see Dr. Northfelt well more like Maryann Forrett for my oncology visit--I have a few things we need to talk about, 1st off I want to ask if I could at least see Dr. N once a year I need the reassurance from him.  Marayann is wonderful and I love her but for me at least I need to see my oncologists face once in awhile.   Dr. N is so busy, he is a big part of the administrative end of oncology  at Mayo Clinic but I need a dr who wants to grace me with his or her presence once in a while.  My list of stuff to ask about is getting longer an longer, Maryann is in for a treat when I go to Mayo on Monday.

Anxiety-Insomnia-and Finding Peace

I am trying to learn to control the thoughts that bombard my brain.  The flashbacks that I get seem to be uncontrollable for me right now, and then they create anxiety and insomnia.  I really believe that my last surgery was not about CANCER, although I can still accept it as a Miracle in my life.  I also am able to realistically except the fact that there are things from my past that have haunted me for years.  I believe that Heavenly Father put that miracle in my life for a purpose, he is trying to teach me to deal with my past and try to come to a place in my life where I can LIVE FREE, free from the demons that constantly create these horrible flashbacks.  When someone tells you "don't be anxious, or think of something else while you are trying to sleep"  those statements in them self create anxiety, trying to not think about sleeping makes me want to sleep so badly but I can't because I have worked myself into  such an anxiety attack that now it is just too late.  I never had anxiety or insomnia before the VILLAIN decided to invade my life, but now that I have it, I'm trying to deal with it the best I can.  Now that I have had this hysterectomy, it is getting worse, the anxiety that built up inside me just to get myself to have the surgery is still lingering in the thoughts and feelings.  The appointment I have with Dr. Magitbay next week is constantly on my mind, and I am scared to go.
My right breast hurts so bad, and I am continually wondering if cancer has taken up residency again, it is this vicious cycle that Cancer patients go through.  I'm quite sure it's nothing, but in the back of my head there is that silly thought.  The Lord has been so patient and loving to me, and I thank him for ever thing  and everyone good in my life.   With HIM I know there is nothing I cannot endure.  I try to find some peaceful moments everyday to reflect on all that HE has given me.

Insomnia in PARIS

Insomnia in Paris .... oh dang it he snuck up on me. I can't make a blanket, onsies, or burp clothes, I can't read my scriptures in another room so I'll sit on the toilet with the lid down and blog. My heart really is full, I am so grateful for my husband and the efforts he went to make this trip happen. I walk around this beautiful city most of the time either with a smile on my face that will not go away or with huge tears in my eyes in dis-belief that I am actually here with the most romantic and thoughtful man in the world. I don't want to slow him down, he is so excited to show me every square mile of this remarkable place where he served his mission so many years ago. My neuropathy is really bad and I am in constant pain, to top it off I forgot my neuropathy meds and I am trying to control the pain with something else, it takes the edge off but by the time we get back to our hotel at night I can hardly walk. I need Tamy ... my personal nurse ... and sweet friend for advice. Tomorrow Eric said we are going to take the train a lot so that will help, I think we walked about 15 miles today, if it were a year ago and I was in better health that would be nothing, but I have to remember my new way of life is slower paced (for now anyway) and that its ok to take some breaks and sit when I need to. Since I've known Eric he has always been about 15-20 steps ahead of us all, at disneyland the kids and I laughed because we were always afraid he wass the one who was going to get lost. My anxiety levels are high, I am excited and really don't want to miss anything but I know if I can't sleep it will be bad tomorrow, the fear of not being able to sleep is harder than ectually trying to sleep...does that make any sense? This morning I am praying the Lord will help me get the much needed sleep I need.