Neuropathy🚩

Just when I thought I was done with  neuropathy.... surprise it's back.  My legs feel like the nerves have been exposed to the air again, the pain is sometimes excruciating.  I am learning that a small percentage of people who get neuropathy from the effects of chemo have to deal with it off and on for life--yes, I am one of those people--no big deal I can handle it--
What IS difficult for me to handle is when I talk to women who have stage 1 or 2 breast cancer and now they have recurrence--today when I was at work one of my friends who I have not seen for awhile came over to talk to me, she was wearing a pink beanie to cover her bald head--she went through a double mastectomy a year and a half before I did, (stage 2) now it has metastasized to her lungs--she showed me the xrays --I can not stop thinking about her today.  Cancer really is this ugly VILLAIN, it invades lives, and just when you think you've turned a corner looking to a bright future BOOM it's back to haunt and taunt you, whether a recurrence or side effects it never goes away.

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.

Chronic Neuropathy

Chronic neuropathic pain affects about 20% of woman who have breast cancer, and used TAXOL as chemo treatment. Guess who has it? It has been really difficult for me to sit down and blog, because my fingers are numb sometimes... from the neuropathy, and my legs, feet and back are in constant pain. I called the doctor today about it, I was advised that chronic neuropathy in breast cancer patients does not go away. However, I talked to someone who had it and she told me hers eventually went away. I am hopeful that the Lord will bless me just one more time and allow the pain to leave my body.
Many people have asked me how it feels, it is difficult to explain, my bones and muscles just ache 24/7. When it hurts the worst I cannot even walk without the pain penetrating my mind, body and soul. There has been so many times that I have been in a fetal position on my bed crying because of the pain, Eric rubs my legs, but the truth is I am not supposed to get my legs or back massaged because it can cause blood clots. Even when he rubs my legs it is only temporary relief, as soon as he stops, the pain begins so I guess that is not a solution either. I have been given pain medicine, they are narcotics and they do take the pain away however, I know I cannot be on those for the rest of my life. I try the natural oils and some other options but that does not help either. It truly is the worse pain I have had to endure on a long term basis, it is hard to deal with when I know it is not going away any time soon, I would love if the doctor would say "OK allow it a couple of weeks after chemo, then it will leave". I asked the doctor if I would be able to run again or exercise again, she said "most people are OK with just walking a little everyday" Well I wanted to say " I am not most people lady, so just watch what I can do."
I will run again someday, I will cycle again someday and I will do all the cardio and lifting weights again, this is just temporary and this pain just helps to remind me of how hard I need to still fight to get my body healthy again and be the athlete again that I was. It would be easy to give up and say that I will never be able to do those things again, but I will I know I will.

Kaitlyn & Brian Visit

I miss Kaitlyn so much and I was so excited when her and Brian told me they were going to be able to visit this weekend. It has been months since I've seen Brian. Seeing them together, here with the family made me miss them even more, I wish so badly that they lived closer. I tried so hard to be up to par with them while they were here, I made sugar cookies for Kaitlyn because I know how much she loves them, and she asked me to make them since it was Valentines Day weekend. Even though my body was in pain, my heart was full of happiness because they were here.
We had alot of fun just staying at home and enjoying each other .Brian and Kaitlyn are so cute and I know why Kaitlyn married him, he is perfect for her in every way. Today they went back to their home in Utah, and I am sad again. Having all of my family in one place at the same time will be a dream come true, the next time that will happen is when Blake gets home from his mission, and speaking of Blake I miss him, and have shed more than one tear over that boy lately. Tonight even as I feel the aching of my body, I am so grateful to be a mom, not only to be a mom but to be Kayla, Blake, Kaitlyn, and Haleigh's mom.
Being a mom is easy when you know they are making wise choices and including the Lord in their lives.

Pain

The last 2 nights have been the most uncomfortable and painful nights of my life. My legs, back, arms and feet are throbbing, I feel like I can't get any relief. I have taken all the drugs prescribed to me and still nothing seems to help. My bones and muscles are in so much pain, it's difficult to describe. Have you ever over exercised your muscles and the next day they ache? I have too, but this is much worse. Eric held me in the fetal position and listened to me cry while telling him I don't want to do this anymore, I wish it was over, I said it so much he did not know how to respond, he rubbed my legs until I fell asleep. Thank goodness for him and Haleigh, they both rubbed and held me not knowing what to say. I love you