If You Give a Mouse a Cookie...

If you give a mouse a cookie, then he'll want a glass of milk.

If you give Sharon fresh oregano from her herb garden, she'll want to make a pot of spaghetti sauce. It felt so good to come home yesterday from a day trip and put on a pot of wonderful smelling sauce simmering on the stove. Not only did it taste delicious, I was even able to share with my son and his girlfriend. It felt good to give to others as others have so generously given to us.

Today I made a great big pasta salad, loaded with fresh vegetables....asparagus, cucumbers, spring onions, celery, tomatoes, green peppers and cilantro. It felt good to begin a project and end with a delicious treat.

Yesterday, my husband and I traveled to Berkley Springs for a day out. My hip/leg hurt immensely as we were walking through the shops. I just couldn't find relief. Luckily there weren't many things to see in the town because I was losing steam as we ended our day. I'm anxious for my second spine injection this Thursday. Historically with my other cycles at the pain clinic, the second injection took all the pain away. I'm looking forward to that hopefully being the case next week. I'll be glad to get a good night sleep without the pain waking me up.

If you give a mouse a glass of milk, he'll need a straw.

My Energy is Coming Back!

You just aren't going to believe this...

Not only did I do housecleaning piddling yesterday, I worked in my herb garden (picked fresh mint and oregano) AND (sit down for this one), I defrosted the large freezer downstairs! You read that right, I actually did a big project AND I didn't take an afternoon nap! I believe it's the first day since being in the hospital that I didn't sleep during the day.

The fresh mint is ready to go with a great big pitcher of spiced ice tea. Picking the oregano makes me want to put on a pot of homemade spaghetti sauce. I believe that will be on the agenda today after slipping to the store and getting the ingredients for the sauce.

It feels so good to be doing things that make me feel useful!

Plans for the Day

My plans for the day are simple...

I am going to do some house cleaning piddling first, followed by finding some new recipes to make now that I am back in the land of the living. I'm going to work a little on the wedding rehearsal decorations, which I am sure will be followed by an afternoon nap. I really need these naps so I might as well plan it into my day.

After the hottest part of the day is over, I want to read a magazine this evening while I float on a raft in the pool and then do some water aerobics.

I hope you enjoy your day too!

First REAL Day of Summer Vacation

It's such a glorious day! The weather is such a gift to me on this first real day of my summer vacation. There is nothing that I love more than a breeze or the wind blowing. It gives me such energy ... puts such a smile on my face.

I worked out in my flower beds this morning for about an hour. Came in and decided that it was way too pretty of a day to have the windows closed. I've piddled all morning and have loved each minute of it! My husband called from work at the exact time that I would have had to leave for radiation if it was any other day...but not today. After all, I am a graduate of 6 weeks of radiation!

It's such a glorious day. I might even put earrings on!!!!!

Time for Celebration!

I am officially finished with phase 1 and 2 of the 4 phases of my treatment!!!!!!!!!!!

Phase #1: Chemo- I was taken off one week earlier of the 6 week treatment because of the side effects that I was...am experiencing. My feet are so much better. Not raw anymore! Now I'm experiencing fluid?? My eyelids look like someone put a syringe of fluid in each eyelid. My right eye, on top of the fluid, has a stye on the bottom eyelid. Makes me feel even uglier than I already do.

Phase #2: Radiation- today was my last day! I was able to walk out of the office today and NOT say, "See you tomorrow" as I've said for the last 6 weeks. Such a good feeling. I made the radiation team a plate of cookies. Okay, I really didn't "make" the cookies but I did drive to Wal-Mart myself to buy the pre-made dough, I did cut the dough with a knife and put it on a cookie sheet, and I took them out of the oven when the timer went off! These days, I call that making something from scratch!! I even got a diploma today!

Phase #3: Surgery- I go to UVA on July 23 for the MRI and meet with the surgeon on July 24. Hopefully, he will tell me that I can have the surgery the next week (that's my timeline...not sure what his timeline is).

Phase #4: Chemo- After my surgery, my oncologist is leaning very strongly to more chemo. This will be the IV kind that I have to go to the treatment room for at the oncologists. He will wait until the results of the surgery but he expressed his concern for killing any "stray" cells that may be floating around after the surgery. If that is what he wants to do, I support that decision. I want them to be wiped out from my system 100% so if that is what I need to do, I'll do it!

The phase after all of this will be to get back to a normal life, back to work, back to feeling like I can put this behind me and live again. I look forward to the day that I can say a miracle happened and that I am cancer free. I pray that I can say those words, pray that it will become a reality. Right now, though, it's just a dream.

I'd like to thank all the special people in my life who have sent me emails and texts congratulating me on this part of my finished journey. On top of that, I had a wonderful surprise when I finished my treatment today. Two of my dearest friends were there to C-e-l-e-b-r-a-t-e with me! It meant the world to have them there. One of my friends little boy drew this precious picture for me...it's a keepsake!

Prayer Request

I have been so very fortunate to have hundreds and hundreds of people praying for me. I have a BIG request. I have a friend, another SLP that I work with, another person touched by cancer, that needs as MANY prayers as the universe can hold.

Please pray for Rita. Ask EVERYONE that you know to please pray for Rita. When you say your prayers for me, please add, "For Sharon and her friend Rita".

I Don't Care How Long the Needle Is!

Today was a great day! The kindest doctor in the world...my pain clinic doc who is just the coolest...knew just how much in pain I was after looking at my x-rays. His office called yesterday evening and said that he will be on vacation next week and they don't have the pain clinic on Friday's...but that he will squeeze me in on Thursday right after my radiation for ... not a consult  ... but an actual injection!!!! I was elated. My pain was going to have an end in sight. This has consumed my life and yes, is much worse than the chemo and radiation treatments that I have had to have. It's a constant pain that runs from my right hip to my foot. I vowed to myself that I WILL NEVER LIFT OR MOVE ANYTHING HEAVY IN MY ENTIRE LIFETIME in order to eliminate this from happening again.

So right after radiation...with only 2 more left, we went to the pain clinic at home. I've been through 2 cycles of 2 injections each over the years. You can get 3 which I usually never need because I feel back to normal after two. The doctor said that the reason he wanted the x-rays was to make sure that the cancer had not spread to my bones, which sometimes happens with pancreatic cancer. He just wanted this reassurance before seeing me. He said that it hadn't, thank you God, and that the spinal stenosis was "extensive in L4 and L5". I would have been concerned had I not actually lifted things to cause this pain. Did I mention that I will never do that again in my entire life? I was so very, very grateful to get the 6 inch needle in my spine today. I was so grateful that I had a doctor who worked me into an already full schedule. I am so grateful that I am already feeling relief. I go in 2 weeks for the 2nd injection and at this time, I really think that I am going to go for the 3rd injection for the first time so that I know that the inflammation is reduced. The doctor said that my spinal stenosis is going to cause me to have to have this procedure over and over and over again but that I'm not a candidate for anything else to help it. Hmmm, I'm going to get through this episode and if I vow to NEVER lift or move anything ever again in my lifetime, then maybe this will be the last time. It's something I'm not going to worry about now. If I can beat cancer, then I can handle getting injections in my spine for the rest of my life.

Blog Titles

I have enjoyed picking the blog titles for my posts. This one will have MANY titles:

*So How Does It Taste?
*What Else Do You Do Besides Sleep?
*Social Security
*Oh Thank You, Thank You  So Much!
*The Count Down is ON!

So how does it taste? I'm not sure. A lovely new side effect has developed. My feet and lips feel numb and my sense of taste has diminished. I know these are short lived now that I'm off chemo. It's all part of the process and I'm fine with that.

What else do you do besides sleep? Not much. I try not to go back to bed after I'm up so instead, I've made the couch my "place to pretend to read". I don't even have the energy to read. My eyelids take over and I sleep soundly for a couple of hours. Then I wake up, eat because I'm famished and that's what causes the nausea, then fall back to sleep. My body is telling me to rest and that's what I'm doing.

Social Security...this could be a 20 page blog in itself but I'll condense because it's 4:30 in the morning. A couple of weeks ago, I received a letter from my long term disability company. That policy hasn't even kicked into mode yet, however they wanted me to apply for Social Security Disability Income. This has been the root of what has been bothering me and has also been the core of what has made me make decisions such as driving myself to radiation. I am only TEMPORARILY disabled, yet they want me to apply for something that is permanent. I did that for my mom after receiving a letter from her oncologist giving her life span in writing. I keep moving the forms, that they are requiring me to send in, from pile to pile. I didn't want to deal with it. Even though the forms kept moving from place to place, the idea settled in my mind....and it bothered me more than you can imagine. SS disability is a permanent thing. You are telling me that I am going to stay disabled. I don't want to do this...please don't make me. With all of these feelings, I took back control of my life. Last Friday, I got a message from the law group that represented the long term disability company. They were calling to assist me in filling out the SS claim. I decided to pull a Scarlet O'Hara and deal with it on Monday. First thing this morning, I called and had to leave a message. The phone tag game was on. Long story short, I spoke with the lawyer this afternoon. After explaining to her that I don't even work during the summer; long term hasn't even kicked in, yet they were trying to reduce their responsibility already; I don't plan on being out of work for any longer than I have to be; this is stage 1 and not a death sentence; and did I mention that I plan on going back to work as soon as I can? The lawyer said that the two reasons to apply for SSDI is if you have been out of work for 1 year already or if you expect to be kept out of work for 1 year. Neither of these apply to me. The lawyer really listened to me and heard me. She agreed that this claim was a bit premature. I promised her that should I not get the results from surgery that are expected, I will contact her for her assistance in this next step. End of phone call and very, very deep sigh from inside my heart.

Oh, thank you, thank you so much! I was finally able to get the lumbar x-ray this evening for my sciatica. The pain is constant and quite severe. I finished the round of steroids without many results. I know that this will not go away without an injection from the pain clinic into my spine. I've been down this path several times already and after 3 weeks, with the pain still a level 6-7, I know that it will not resolve itself without the next step. I have spinal stenosis and the inflammation is pressing on nerves causing constant pain from my hip down my leg to my foot. Yes, this is from moving the furniture on my screened in porch. Yes, this is the result of thinking that I can still do these things. Yes, this pain is all because I was stupid.  I hope to hear from the pain clinic within the next day or two and then go in for a consult, followed by the injection. It's going to be so wonderful not being in pain. My life will be so happy!!!

The count down is on. I have  T, W, Th, F, M left for radiation treatments. Help me count...1, 2, 3, 4, 5 more treatments. In a little over 6 hours, I will be able to say that I have 4 more treatments! I'm so excited.

Out Of My Hands

I remember distinctly when the oncologist was telling us about the side effects of the chemo drug, he mentioned several times the hand and foot syndrome. I thought I better be safe than sorry so yesterday morning before radiation, I called the oncologist and left a message with his nurse about what is happening to my feet and hands. The nurse called me back and told me that she wanted to see me after my radiation treatment.

When the nurse saw my feet and hands, she said to immediately STOP taking the chemo. She said that my body is telling me that it's had enough and that it can't handle any more. She said that people try to hide this side effect from them but she said I did the right thing by calling her. The nurse said that if I didn't come off the chemo that the side effects would only get worse, with additionally getting blisters in my mouth. She said that I'll probably have more pain in my feet for the next week but then it should get better.

I told her that I feel that deserting the chemo will change the end result. She said not to feel like that at all. I will still get the next 6 days of radiation but that my body is saying it just can't take any more of the drug.

So, part  1 of my 2 part treatment is over. I am grateful that my body waited 5 of the 6 weeks to develop this side effect. It could have happened after just a few days...where would I have been then with options?

There Has to be Something

There has to be something that doesn't hurt....let me think. I haven't been feeling the best. It's definitely to be expected though with what is going in my body.

--The fatigue is the most draining but that's what good afternoon naps are for.
--The nausea is to be expected and could be a lot worse. I usually find that I get more nausea when I'm hungry.  Eating a piece of toasted bagel or a half of a peanut butter sandwich makes this feel a little better.
--The stomach spasms are definitely less severe than they were in the beginning. I take this as a good sign that the tumor is shrinking and not causing as much havoc on my pancreas????
--My skin is changing...spots coming here and there. Thank goodness for Cover Girl Makeup!
--My right hip all the way down to my foot still hurts like heck but that will teach me to NOT move heavy things.  I  went to the internist and got a steroid to reduce the inflammation in my sciatica. It's better but definitely NOT gone. I have a couple more days of the steroid so hopefully magic will happen soon.
--By far the most interesting side effect from the treatment is what is happening to my feet. The bottom of both feet have the feeling of being raw. Not easy to walk on raw feet. I'm not sure if this is what it is but the oncologist said that one of the side effects of the chemo is foot and hand disease. If this side effect happens, then you have to stop the chemo. I don't have anything on my hands other than some tenderness in the fold of my skin on my fingers. I don't see a rash. I laugh because when I think of this hand and foot condition, I want to call it hoof and mouth instead of hand and foot! I bought a very cushiony pair of slippers today to ease the pain a little when I walk in the house on my raw feet.

There is something that doesn't hurt....my heart because it is so filled with all of the thoughts, prayers, well wishes and kindness from everyone!

On a lighter note, the weather is absolutely beautiful! There is nothing I love more than to have the windows open and a breeze blowing through!

EXACTLY What I Needed

My ordinary day yesterday turned out to be EXACTLY what I needed. I even got out my glue gun and fixed something that needed it!! I woke up trying to make it as normal of a day as possible, focusing hard on taking the fact out that I had radiation to go to. I was determined not to take my nap in bed yesterday, instead pretending to be sleepy from reading a book on the couch. I knew the real reason my eyelids weren't staying open but that didn't mean that I was going to let my body take over my mind. I needed it to be my first day of summer ordinary day and by golly, IT WAS!

I want to thank my radiation buddies for allowing me to take control back of my life. It means a lot to me that they support me in knowing what I have to do. All my life, I have had a lot of responsibility on my shoulders. Being the oldest of 5 in my family was a task in itself. My dad worked away from home for years, so I became the fill-in-parent with my mom in making life decisions. Life wasn't easy much of the time but we made it work.

So take a person who needs to have control of their life ... then take that control away from them. Throw in a little tumor, sprinkle cancer cells on top and what do you have? You have someone who is in total disarray. I had to do something to stop that from happening. I had to make my day as normal as possible to give myself a purpose again. I remember when my mom was diagnosed with lung cancer. After taking her to the emergency room and after an immediate hospital stay, my mom came to live with us. I remember watching her just lay in the bed having no purpose. I knew she needed to get a washcloth back in her hand to clean the kitchen counters once again. I also remember when caring for my dad after his health began to decline, that every question someone asked him, his response would be, "Ask Sharon". He didn't have a purpose anymore. I started putting more responsibility back on him. He needed to feel that there was a reason to wake up in the morning.

So, my purpose each day this summer is to wake up and think about what I am going to "do" with my day. Although the glue gun is safely tucked back away in it's labeled container, I might just venture into my craft room again today and get some scrapbooking paper out to create! I might read a little more on the couch. I might piddle, because I am the biggest piddler there is! I will do all of this and perhaps more (or less) after I go to radiation this morning. I will do this (and perhaps less) because I can. I have a purpose.

Ordinary Day

I long for an ordinary day. The kind of ordinary days that I use to have before the end of April.  But then I ask myself...what exactly would an ordinary day look like?

--A day with no worries...Well that's not possible when you're a mom, wife, friend, sibling...
--A day with no aches...I've always had back and hip pain so that certainly wasn't before all this happened.
--A day without fatigue...I get up at 4:40 am to go to work--I'm always tired in some sort of way.

I have decided that tomorrow is my first official day of trying to make it as ordinary of a day as possible. I decided that I can make my day as ordinary as I want it to be by my frame of mind.

In the real world, tomorrow would be my first official day of summer (minus two workdays). I am going to pretend that I was at school on Friday, waving to the buses, blowing bubbles and noise makers with the rest of the staff, as the kids pulled from our parking lot in their big yellow limos. I am going to pretend that I have a summer of projects to do before the school year begins again. I am going to get in the frame of mind that will hopefully give me the energy I need to feel whole again.

Tomorrow is the day...my ordinary day.

Who Actually Ran the Marathon?

On Saturday morning, I heard Butch power washing the side of our house when I woke up. Hmmm, wouldn't it be great if he could power wash the screened-in porch? That would be an instant clean instead of doing it by hand like I've done many times in past summers. So, without Butch seeing me, I took all the furniture and "stuff" off the screened-in porch and moved the couch from one side to the other.

Don't feel sorry for me when I say that I MAJORLY aggravated the sciatica nerve in my hip.The constant pain runs from my hip all the way down to my foot. I did it to myself. I was STUPID for moving furniture! The pain has been rather INTENSE since then, with the levels rising to an 8. Now an 8 to me would perhaps be a 10 in others books. In my mind, I couldn't imagine what a pain level 10 would even feel like, a 9 is below that, hence what I define as a level 8.

I have a history of spinal stenosis, arthritis of my lower spine and nerves that are compressed by the disc. I've gone to the pain clinic several times over the years for injections in my spine due to the exact pain that I'm experiencing now. Yesterday I called the pain clinic on the way home from radiation because this is NOT getting any better. After a few back and forth calls, the pain management doctor needs an updated lumbar x-ray before I can get injection(s) to relieve the inflammation. Today, as soon as the office opens, I'm going to call my internist to see if she can help me (a) with lining up the x-ray and (b) perhaps a muscle relaxer to make this tolerable.

A dear friend that I admire for MANY reasons emailed me last week to say that she was running a marathon in the valley. She left the fairgrounds on Saturday morning at 4:00 am and was due to return Sunday morning no later than 8:00 am. Knowing that she was just too close for me not to try and see her, I got up early Sunday morning and headed over to the fairgrounds...about 3 miles from my house...to greet her when she came in from her 100 MILE marathon. Yes, she ran 100 miles!!!! I arrived around 6:30 and shortly after 7:30, my dear friend came through the fairground gates! She took her final lap around the track and then I got a hug! During her 100 mile run through the valley in the wee hours of the morning, throughout the day and while everyone slept,  ALL during the night, she ran past the house where I grew up.

I admire this special person for ALL that she is and ALL that she does. She spends each summer volunteering her time and professional talents to the children and villagers of Malawi. She is one of the most compassionate people that I know. She and her husband have raised children that are continuing to give back to people of the world through projects that they have done and their professions.

We've taught together for 12 years! We've done co-therapy together and have had some of the best conversations about helping our students. I admire her for so, so many reasons.

Who actually ran the marathon? NOT the person with the pulled muscle!

Public Meltdown

Today I had my first public meltdown. There was a reason though that I think you'll agree deserved a meltdown outside the walls of my home.

I went for radiation as scheduled. A dear friend came all the way from Massanutten Mountain to take me. As I walked in and scanned my card to let them know I was there, the receptionist, who usually just says hello, said "Oh Mrs. Funk, there's a problem with you machine today. Let me call back to see if they can do you today." (Beginning of meltdown seen on my face and in my heart). She called back and said that they will be able to do it on the other machine and to go back and change (Ahhh, meltdown beginning to fade).

As I was changing, there was a knock on the dressing room door (Not a good sign). The therapist said that they won't be able to do radiation today (Set stage for the real meltdown). I stood there, realizing that they HAVE to do it today. I can't miss another treatment. I just can't! Just this morning in the mail, I received the scheduled MRI for July 23rd and surgeon's appointment for July 24th from UVA. The MRI is scheduled for 1 month from my last treatment, which was suppose to be June 22nd but is now June 25th. I need this treatment. Tears streamed down my face as I tried to tell them that EVERYTHING is relying on these dates. I didn't tell them that the same week that I find out about surgery is the week of my son's wedding. I wanted to scream out loud (but didn't)...YOU DON'T WANT TO MESS WITH A WOMAN ON DRUGS PEOPLE!

I respectfully said again how important it is that I get this treatment today. I got dressed. I usually see the radiation oncologist on Tuesdays after radiation. They went ahead and put me in a room to see her first. I told her how important it was to get treatment today.

Somehow, what appeared like a very complicated process to "program" the other machine happened in a matter of 10 minutes. I changed again and thanked them about 300 times for the treatment. Tears streamed down my face as I thought about how my world relies on this timeline.

I know now that had I had a meltdown last Tuesday when the machine was broke and couldn't receive treatment, that I would have been absorbed into the schedule for machine #2.

All I can say is that:
--They know that I know that it IS POSSIBLE to receive treatment on the other machine.
--They know that I have meltdowns...respectable meltdowns...but none-the-less, public meltdowns.
--They know, and hopefully will remember, how important my timeline is.

Carrying My Shoulders

I'm so tired that it hurts to carry my shoulders. If I could put them in a rolling suitcase and just pull them, I would. All I have done this week is sleep. When I met with the nurse today after radiation, she asked if I've had my blood levels checked recently. I will on Monday when I meet with my oncologist.