Every now and then.... Sunday, Aug. 29, 2010

Dear Friends,

Today has been a very good day, most of this weekend, actually. This afternoon, I thought about times that were not so great and some of the things I've done to bring about a positive change in attitude. I take a walk on the beach, read a book in the sun, go to a movie, take a drive, throw myself into work or a project I love, talk with or have lunch with a good friend, or get on the computer and read caring, touching, supportive messages from my friends.

I have a special file where I keep the notes and ecards many have sent me. Each of you has played an important part in this adventure by either sharing support for my decisions, encouraging me to keep the faith, celebrating with me when there has been good news or just "being there".

Occasionally when I am not in my happy place, I turn to this collection to help me feel more positive and optimistic. When I read your notes, they remind me that there are others out there checking on how things are going; friends might be touched by feelings I am experiencing; they are living through my days with me without physical presence; and many are trying to figure out the best way to be of help.

Oh dear friends, you already are!

*Everyone needs reassurance, encouragement.
*Everyone needs to know they matter, in someway to someone.
*Everyone needs to have someone who listens and sincerely cares.

Many of you have reached out and given me these things...filling in the empty spaces...leaving footprints on my heart.

Here is just a small sample of the kind and thoughtful notes I have been blessed to receive:

Dear Donalee,

Many years ago a friend, who twice survived breast cancer, made a tapestry to record her struggles with this awful disease. This was done after she was healed the second time. She used various fabrics with various colors to record the history of her struggles.

Donalee, I can see your tapestry. I see bright yellows (happy face), I see reds (determination to seek the best decision), I see greens (new growth of hope), I see browns (being practical), I see blues (your tears) and I see multi-colored music notes woven into your tapestry; but I don’t see any black color. There is no blackness in your tapestry - because you have hope.

Perhaps tomorrow will be a better day with more music, more encouraging news and more sunshine.

You are still in my prayers.

Love, Angeline

Hi,
Well I read your blog. What a wonderful job you did and the research you did for yourself. I was just amazed and the end results seem pretty good. I guess this just proves that we need to be about 5 steps ahead of the doctors with questions, knowledge and so much more these days. I guess things in medicine have changed so much that this is a lesson everyone should learn.

I also had to share when I turned my calendar to look at August this saying was there and it remined me so much of you. "Never trouble another for what you can do yourself." You let those help when you needed them to and you did the rest. What a gal...Jim and your mom would be very proud of you.

Well I hope you are getting settled back into a normal life and resting from your trip. I am sorry I didn't know sooner about your cancer to help from long distance but your friends there seemed to be right with you when you needed them.

Take care and I'll be in touch, Cheryl

Hi Donalee,

"Inside myself is a place where I live all alone and that's where you renew your springs that never dry up."
Pearl S. Buck

This quote popped up on my homepage just now, and after reading your blog last night, made me think of you. I am thinking you are finding that space these past few days.

Love, Karen

Donalee,

No need to be a conversationalist. Just wanted you to know my heart is thinking of you today. His eye is on the sparrow!

Love, Rhonda

No matter how insignificant you may think the message...no matter how short or how long...even if it seems like nothing anyone would want to hear, need to hear, spend the time to check...I hope you will forget all that and send it anyway.

Each time a note is sent, it tells me you thought about me.
And when someone is entirely on their own, there IS no greater gift

Thank you so much for your thoughtfulness, my friends. I will enjoy sharing many warm and cheerful thoughts with you too.

Hugs, Donalee

TGIF Friday, Aug. 27, 2010

Let's see...how exactly does this week seem to be ending? Better than most of the week has been, but I wasn't so sure this morning.

I was holding on to myself mentally by a thread as I drove to the center, tears already making their way out from ducts I had tried to will closed so the waterworks couldn't escape. When I went inside, I told myself that the cheerfulness of everyone here would help me get my act together.

Amelia came to get me. She and Sara had on some very colorful tops to their scrubs, one even in lime green, which made me smile. Sara, who has spent the most time with me and is pretty perceptive asked me how things were going, "really..." she added and waited for my answer.

As I was lying down on the treatment table, I told her that I'd had better days and a few little trickles escaped from my eyes. She reassured me that I was likely to have days like that, but that we all do. "Sometimes the best thing is to just go home and have a good cry," she said, sharing a time she did just that and how she felt afterwards. I've done it too.

Amelia was trying to get me into the correct place on the table, the usual tug and yank method, when she said, "I have to get you crooked so I can straighten you up!" For some reason, it made me laugh and we all were laughing at the oxymoron. Instantly the cloudiness lifted...it felt great! Laughter really WAS the best medicine today!

I asked Sara if it was possible to smell an odor as if something was burning, because the last three days, I'd had that smell. She said she had been told that before by other patients but had not experienced anything like that herself. Said she felt we likely have sensitive smell. Didn't confirm or deny what it was or might have been so I am still curious. Is it the machine or inside me? Still makes me wonder...

Friday's are x-ray days to make sure they are hitting their target area and we are still on track. Amelia proudly announced,"Your X-rays are perfect! Everything is going great!" It felt good to hear something like that even though I don't want to be there.

When treatment was over for the day, I went back to the dressing room. Karen was there and she told me a little about the last few days and how things were going with herself and her family. She asked a little about mine, or lack thereof. I explained about the deaths, the retirement, the move as briefly but sustinctly as I could. She was amazed and asked, "No kids, no siblings? Wow, that must be tough!"

At that moment, I felt the doors open on those tear ducts again as I responded with, "Yeah, more than you know. This wasn't the life I had in mind but there must be a reason." Nothing more needed to be said. As Amelia came to get her for treatment, I stood up to leave as she did. Karen's spontaneous and empathetic hug was exactly what I needed.

Walked out deciding if I should go home and have a pity party for myself or do something different. I'd already had a misunderstanding with a dear friend yesterday and have ridden the roller coaster of emotions up and down for several days, getting nowhere. And before you ask, I was with friends on Wednesday AND Thursday, not alone, and wore a great mask through it all too. I'm really well practiced at that. Always felt it better not to have others be concerned and if I don't show anything, they won't know anything...or so I like to think. ;-)

Got into the car and headed south to Grand Haven. Pulled into a shady parking space in the Municipal lot next to where you view the Musical Fountain, put a leash on Foxy and told her, "We are going for a good walk. It's sunny, breezy, the boats are out, there are people all over, and we are walking to the pier and back." That's exactly what we did.

It was nice to wear my dog out for once instead of visa versa. By the time I'd finished enjoying the view and the walk, the endorphins were filling my brain and body with healing and positive thoughts. I felt great!

We'll avoid weekends there, but walks a couple days a week would be good and uplifting for both of us. Ever since I first walked that boardwalk last summer, I have found it to be a wonderful, reflective, and stimulating place for me and my spirit. If I lose a few pounds and get some strength back in my knee, that will be a bonus! LOL

Sometimes I have a face I wear to protect you from my feelings and me from feeling yours. I call it my "you don't need to know or worry" face. It is positive, happy, smiling and better and more comforting for all of you to see.

I am still that private person who just happens to have a blog. I don't want pity or people feeling like they have to do things for me or take over things for me. I am used to doing things for others, not asking people to do things for me. But I will, when the time is right and I realize I need to.

And though I personally feel I am sometimes...I am not broken, unable, incompetent, or invisible.

Granted, I am not the same person I was back in March and I presently have a few physical and emotional hurdles to deal with. But with your kind words, understanding, and support, one day at a time seems reasonable, doable, and worth all the roller coaster rides along the way.

Thank you for staying in, and not retreating from, my life.

My Kind of Weather Outside, not Inside Weds. Aug. 25, 2010

Woke up on my own without the alarm this morning so I must be getting used to the 8:00 am time slot once again. The difficult part was having my mind already filled with things I did not want to think about. Before I even knew it, my eyes were filled with tears. Crappy way to start a morning!

I got up and tried to figure out what to wear while my head felt like it was stuffed with cotton. I fumbled around, tried on this, that, not satisfied with anything in particular, not caring completely either. When I finally settled on something I vowed to get more things clean when I got home, get some things ironed that I had carelessly thrown down, and again, I was upset with myself for the little things, things that in the long run, really don't matter.

Even though it is cooler today and very pleasant, I still hesitate to take Foxy because of what it "might" become. She looks at me with those sad eyes and even though her tail is wagging, I feel guilty and sad to leave her, but I do.

Drove the usual route the usual way to the usual turn off and the usual parking space, but I feel my life isn't usual at all. It isn't going where I thought it would, I am not ending up how I thought I should, and I really don't know where I want to be or go from here.

Greeted Kristin at the desk with my usual smile, a bit more painted on that before, walk down the hall, the usual routine. While I was in my cubicle Karen came in as we are pretty much scheduled for the same time.

When we were both waiting, she got to talking about her 4 year old grandson and how he was anxiously waiting for Nana to get her owie treated so they could spend the special day together. I listened and laughed and at the same time, envied her for the family and the joys in her life. It's the usual...I am not.

Absentmindedly, I had left my bra on today and in my embarrassing moment, didn't even realize it until Sara opened the hospital wrap to get my breast exposed. There are just no brain cells of significant value engaged this morning. They chuckled along with me, says it happens often, and kept the conversation going. Treatment was over much more quickly than it had begun!

As I walked out, I saw Karen, her grandson, and a relative walking out to the car together. That is so how I saw myself many times over the years.

I am headed back home to pick up Foxy so she can at least have a ride to the coffee shop this morning where I will meet several of my friends for our weekly visit. I will listen as one tells of her exploits, another shares her weekend, and then just float in and out of the chatter that will fill the space, grateful for at least an hour that I won't have to think, or feel, hurt or care. Everyone here has families, kids and grandkids...the usual.

Hopefully after this time with others, things will look brighter rather than how they feel right now. I may be Stage I, I may be "lucky" as everyone frequently reminds me, but today I just wish I didn't have to deal with myself and my thoughts and this c-thing was only an "almost" that really didn't happen...and that is becoming more and more, the usual.

Love Comes in Many Forms

Had a lovely visit with a friend this morning, partly when we were both driving in our cars. I could hear the excitement in his voice as he talked of new plans, new decisions, and a future that looked brighter than it had in a very long time. Knowing of the hardships that have been endured, I certainly couldn't have been any more delighted to hear the excitement in his voice. This was definitely going to be a week filled with much joy, fun and positive events for him and that in itself makes me smile. He has been through SO much, it is time!

When we disconnected, my only thought was that I hope it's all for real this time. I hope things will continue to move forward and the relationship will develop into everything he has hoped for, sacrificed for, and believed would happen. Finally an opportunity for more flexibility, more time to work on the relationship and a chance for closeness rather than being at a distance so much of the time.

Loving at a distance is something I know a lot about, after having been married for 27 years with 19 of those being at a distance. Only geography, not in our hearts, however. Jamie was busy with his project and finally achieving and obtaining the patent for it he so richly deserved. I completed a very successful and delightful 32 years of teaching with wonderful opportunities, memorable activities, and dear students and colleagues, able to do many things a move east would not have allowed me to accomplish. He recognized that, I didn't at the time.

Love for us meant sacrificing things and we did that for each other without thinking. Sometimes I regret things, as I think we all do. But then I look at the many ways that I am richer for that experience. I know about giving, trusting, honoring, believing, and sacrificing for something or someone you believe in. It wasn't an effort, it just was the way it should be because of loving someone that much.

Would I recommend that lifestyle to anyone else? Not likely, for it wasn't what I grew up wanting. I always believed I would have the house, the wonderful husband to come home to or who came home every night to adore, and children to enjoy even at their worst moments and delight in helping and loving as they became adults.

But I was loved, incredibly much, and loved him deeply as well. We knew it and I see more and more how very blessed I was after all and how much I want it and more for those I care about.

Saturday was painful, mentally and physically August 21, 2010

I awoke about 6 am to rain drops on the air conditioner. With a hope it might cool things off, I rolled over, drifting back to sleep. When the alarm went off at 9:00, I got up slowly with pain in the front upper leg muscles I hadn't felt before. Lowering myself into a sitting position, raising myself from one...the pain from my knee along the top of my femur was excrutiating! I walked around hoping to loosen things up a bit before heading to work where I could be on my feet for nearly four hours.

Around 10:30 I went out to the garage to get into the car and head to work. There I found the garage door wide open, rain having found its way inside about four feet, some things surrounding the door getting wet, as I realized what I had done, and I felt frustration build. I NEVER leave the garage door open!

My thoughts began bouncing all over the place. What is wrong with me lately? Is my mind going too? What will I do if THAT happens? I don't have time to deal with any of this now and I don't care! Talk about doing a great job of beating myself up! I eased into the car, wincing from the pain that was shooting through the muscles in my upper leg and praying that it would ease up soon.

Again, it was heating up outside, getting muggy and I found myself having some difficulty breathing. I turned the air on in the car full blast and tried to forget everything...my stupidity, the pain in my legs, the discomfort I was experiencing, the heat I was feeling in my body as another hot flash loomed unmercifully and the frustration as the sweat started to creep from my hairline and slither down my face.

I enjoy working at the Hokey Pokey, interacting with the customers and the wonderful, caring people who work there. The store was busy in spurts keeping us all actively involved in the goings on and needs of those who were shopping. I found myself needing to sit down on a high bar stool during the last hour to help as I was also feeling whipped.

My friend John who was also working today reminded me that not only could my physical and medical challenges cause me to be tired, but the toll this was taking on me emotionally is draining as well. Of course that made sense and I appreciated his thoughtfulness in helping with a reason for feeling the way I was. But I felt like things were coming at me from all sides today and I was losing! When the other two gals that were taking over the shifts at 2:30 arrived, as much as I love being there with everyone, I was desperately wanting to get home.

I walked around with Foxy for a little while once I got there, but even she didn't want to stay outside for long. Making sure to close the garage door this time, I went inside to finish up the laundry and see what I else I could do. My legs were aching and I couldn't get to the Tylenol fast enough. This really surprised me as I'd never experienced pain in this area before. Everytime I got up and down, pain would shoot up and down, feeling tight and making me reluctant to move. I decided to try lying down and went in to read for awhile. Before I knew it, I had again fallen asleep, waking about an hour later. This is getting ridiculous!

Feeling the pain in my legs again, my monkey mind began to run rampant with thoughts of cancer showing up in my bones, or maybe in my brain since I seemed to have trouble remembering things lately. I started to wonder when it would return again. Would it be a few months or a few years after the aromatase inhibitor ceased and my estrogen could flow freely once again? I felt anger seeping in, directed at my body for betraying me and letting those cells grow happily and spontaneously while surrounded by a defense system that seemed to retreat rather than report for duty.

I gathered up Foxy and we went for a short ride. I think I would have gone on until time or gas ran out right then because I didn't care where I went or for how long. Who would care anyway? Who would even know I was gone? What difference would my absence make? How long would it take before anyone realized I was missing? Would it even matter?

Like a slap on the head, I was reminded that I was meeting Nancy at 7:15 to see the play, Blithe Spirit, at the Howmet. There was no time for self pity or childish behavior and I needed to get a serious grip. I turned the car around, let Foxy continue to enjoy the window, and we made our way from anywhere and everywhere to home.

It was cooler now, a break from the humidity for us this evening. The play was delightful, Nancy's laughter contagious and her company enjoyable as always. I got home around 10:15.

Foxy and I walked around outside again, this time grateful for a break from the hot and humid nights as well as the daytime hours. I wanted to enjoy the pleasant evening and walk off the remaining nervous energy before it took me over again.

Hopefully, things will feel better and look a bit brighter in the morning.

Friday was TOO hot! Aug. 21, 2010

Yesterday and today are too filled with humidity for my liking! No matter how I try to focus on the positives, my activities, things I am accomplishing, the weather isn't helping my disposition today at all. When it gets so warm and the air so thick that it feels like I am breathing water, my energy is zapped and sometimes my attitude right along with it!

After a busy Thursday, I was happy to settle into a spot at home, get some paperwork done, clean up around the house and start on a few projects. I went out to set up the hose to get some plants watered that needed it and and hurried back into the house, grateful for the air conditioners that were humming away and keeping things reasonable inside. With the sun now beating down fiercely on the roof, without them I wouldn't have had a chance to beat the heat at all.

I chatted with a friend on line, tried to get caught up with some emails, then felt an overwhelming need to go lie down about 2:00. With drooping eyelids, it didn't take me more than a few minutes to fall asleep, waking up with a start about 3:30! I always try to remind myself that I only do that when I need it and I was lacking a few hours in sleep this week.

About 5:30, I received a request from my friend Sondra to help turn pages for a friend during his concert this evening. As cool as I felt and eager to help, I agreed to do it. It helped that I was planning to attend anyway. What I didn't count on was how incredibly hot it was outside!

The concert was in a favorite church in the area that relies solely on fans and a prayer for some sort of breeze to flow through the open windows. There wasn't much at all and at 7:00pm, it was well in the 80's outside still, so you can just imagine how stifling it was indoors. Even though my outfit was cotton and I was drinking ice water, nothing was successful in keeping me cool. Add to that the inevitable hot flashes that strike without warning. There was no end to the sweat that seemed to be everywhere.

Bryan, the pianist and friend I was turning pages for, was not comfortable with the heat either, especially with all physical requirements of playing incredibly technical pieces of music that required energy from beginning to end. There was a fan positioned right behind where we were seated to try and help, but the help it gave, especially the second half of the concert, was minimal. The four selections they performed were amazing, especially under such taxing conditions, and their performance thoroughly delighted audience members. People were gracious and thanked them both but also dispersed pretty quickly, heading to air conditioned cars, homes and maybe even restaurants to escape the intense heat.

Except for the heat I enjoyed the wonderful opportunity to assist Bryan and take part in the concert. Up and down, up and down to turn pages. I am beginning to feel muscles in my upper legs I didn't even know were there.

How thankful to return home! Went outside to turn off the sprinkler chuckling as I'd heard there was a likelihood of some rain tonight. Well naturally, I just watered today so that makes perfect sense! LOL I had gone right from my car parked in the garage to the faucet to turn off the water. Without thinking, I left the garage door open, went into the house to take off my heels, peeled off my sticky clothes and cool my body down in the shower. By 10:00, I was done for the night.

Oh I hope for a cooler day tomorrow!

Shopping with Jessica and Julia Wednesday, August 18, 2010

Today was a girly girl day! My friend Jessica had invited me to come along on a school shopping expedition to the mall in search of clothes for six year old daughter, Julia. The boys were camping with their uncle, dad Paul was at work, and we were off to Riverview Crossing in Grand Rapids to see what bargains we could find.

When we arrived, we parked by the huge Cinema and went inside the two story mall, wandering from store to store to store! Only stopping for lunch, we ended up finding four dresses, two top and skirt outfits, one pair of leggings, and two swimsuits for next year. With Jessica's bargain hunting skills, she saved WAY more than they cost.

Every time Julia tried them on, we couldn't believe how fortunate we were to find something else. Her big smile let us know each time she loved what she was wearing and her mom always checked to make sure she really liked it. You should have seen how delighted she was when she found the glittery hot pink tennis shoes with little silver hearts! LOL

Nearing the end of the afternoon, we were all getting pretty tired. Can't tell you how many times we went up and down the escalators, but we rode the elevator twice because she loved it. All surrounded with glass, it was huge and we put her in charge of the buttons. Such power she had! We went into all the major department stores, hit a few other stores along the way and covered the length on the top floor and the bottom. Definitely got our walking in today!

When we got back to the house, Julia picked out a girl movie for us to watch and it was "Hairspray". Tonight she got to also choose a backwards dinner and so far selected ice cream and then salad. With a few small additions, we all enjoyed dinner and a movie, some down time after a very busy day.

Time had really passed quickly. It was around 8 when I finally left, knowing I had Foxy at home waiting for dinner after a long day alone. I had a little confusion regarding an earlier message I had left a friend and upon seeing her two missed messages, I called her right away to explain what had happened to my plans not hearing her calls. I sensed some aggravation and disappointment and accepted responsibility for not seeing her message earlier this evening. I had said "maybe..." but I'll know better than to say even that next time.

When silence returned to the car, I found I felt a little emptiness. Different scenes from the day filled my thoughts and I considered my own life. I had always wanted a daughter of my own, came close a couple times, but it wasn't meant to be. I felt a bit of regret creeping in.

Being tired and before I could let my emotions get the best of me, I thought of many things I had shared over the years with my students. The way they made me feel, the things we created and shared together, all the activities that kept us busy and alive, and how blessed I was to be in touch with many of them even now.

You know, not everyone can say they have over 2000 kids...but I can! LOL And even if all of them aren't in touch anymore, they will always be part of my memories and most of them have a space in my heart. I felt a smile creep back onto my face and some of those memories flash into my mind.

Right to the very end...it has been a really great day!

Tuesday's are Doctor Days August 17, 2010

Checked in, changed, waited. Karen was already there today so we were talking for awhile when Sara came to get me.

This time I was lying down ready to begin when Amelia, one of the other techs, flipped the light switch as she left to get behind the wall. I didn't want to say anything this time so I just dealt with it. Silly that something like that would be disconcerting, but I really didn't like the bright overhead lights on in the room.

When Trilogy finished, I mentioned to Sara that I hoped I didn't have to have the bright lights on every time because it wasn't as comfortable for me. She told me all I needed was to say something and they would keep them off, relying only on the lower lighting. It was just habit that had them turning the lights up because many patients prefer that.

After treatment, I went back to the dressing room, got my clothes out of the locker, and waited patiently for Dr. Tate's nurse to come and get me. After about 15 minutes, I was taken to the other side of the wing and accompanied into an exam room. There, the oncology nurse took my temperature which was 97.2, pretty normal for me; then my blood pressure which was 123 over 83, and asked about any problems I'd been having, etc. After putting everything into the computer, she left me to wait for the doctor.

When Dr. Tate arrived, he greeted me warmly and asked how I felt about the radiology procedures and my two treatments so far. We chatted in general for a few minutes, he reviewed the information on the computer screen and checked on a few things regarding my health. He told me some things to watch for and then said that the first two appointments with him were likely to be a bit boring, to which I couldn't help but laugh. After those, he said, we'd likely have some things to talk about more extensively. He asked me if I had any questions, thanked me for coming in and he was off and so was I.

Two days down, 31 more to go. Still, no big deal and today I'm off to Starbucks for a white chocolate mocha latte. What a treat!

The Real Thing Monday, Aug. 16, 2010

First day of radiation treatments. I was nervous in a way but didn't want to admit it to myself or anyone else. One thing I knew was that the radiation technicians would do their best to make sure I was comfortable and understood what was going on. I knew what the routine was and the expectations when I arrived.

First, check in at the registration desk because then the techs will know I have arrived. Second, walk to the women's dressing room at the back of the radiation area, pick out a curtained room and a locker, take off everything above the waist and drape yourself in one of those beautiful beige gowns. Third, find a comfy chair, check out the TV (which is either set on CNN or FOX news) and wait...

Grant came to get me and Sara was waiting by the table when I walked into the room. There before me was Trilogy, the machine I was going to be getting quite intimate with for the next six weeks. Taller than I am and at least four feet in width, it was ready to begin to irradiate my cancer cells. All I had to do was lie down on the black table and let it all happen. The two of them helped place my arms comfortably above my head in the stirrups, opened my gown then placed a towel over both breasts.

They stood on either side of me, Sara pulling on the sheet underneath my body, first adjusting my hip position with a tug, then my upper body. All the time I can see my reflection in Trilogy's "picture window" just to my right. There is a lime green laser light running vertically down the middle of my chest as they get things lined up. Sara folds back the towel to expose my left breast and they double check how the laser light lines line up with my three center tattoos.

Leaving the overhead lights low, Grant tells me they are about to get started. "All you need to do is relax, the machine will do everything else. We are going back behind the wall. If you need anything, just let us know, we can always hear you." With a thank you, I told them I'd be fine. This first time, I was just going to listen to the music, close my eyes, and get used to the sound of the machine. He gently pushed my bed of sorts under Trilogy's large head and I heard the whirr...it was time.

Very slowly, the head moved to my right hand side at an angle, poised to direct two beams about 8 seconds each to the designated area in the upper right quadrant. Once those were done, Trilogy's large head rotated over top of me to take it's place directly opposite from where it had just been and was now below my left side. This time, the two beams of about 8 seconds each would be directed at an angle upwards. Afterwards, Trilogy seems to sigh as it returns to the overhead position.

Grant and Sara came in, asked how I felt, helped me get myself upright and gave some assistance to make sure I could slide off the table without any dizziness. We shared a few more words and some chuckles and I walked out of the treatment room, past the control station with all the computer screens and the other two technicians seated there, eyes focused on the screens, and went back to the dressing area.

When I walked back in I thought, this is no big deal. Why would anyone be concerned about 33 days of this? Nothing to it! As I entered, I noticed and attractive, young looking woman likely in her forties, seated in one of the other chairs. We introduced ourselves and I discovered, among other things, that Karen had been having treatments for her breast cancer for about 10 days. I asked if she would feel comfortable sharing a little about what she has experienced and she did.

She was blessed with a large family in the area who insisted on taking her to her treatments from the very start. She was certain she could have made it fine the first week too but was now beginning to feel glad she had the company. Even though she could drive, she appreciated that someone else came along, the conversation was usually not about the treatment or cancer, and it was a nice diversion. A couple days she actually felt a little tired and was glad she didn't have to drive herself. I remembered riding in the car with Walt to surgery, with Carol to my oncologist and radiologist visit. It was nice to be distracted with things going on in their lives and not have time to focus on my cancer and the events of the day. Amazing how much calmer and relaxed I was when I arrived.

Karen also explained some of the physical things she was experiencing already. An area that resembled a burn was starting to appear. Her skin was drying and was becoming irritated so she purchased some cream there for about $20.00 which definitely seemed to help. She was frustrated with her solid deodorant, the kind we were asked to get, and I was able to help. I had found the specialized, recommended brand on sale at Walgreen's in a roll on and she was delighted. She could hardly wait to stop on her way home and pick up some. It felt good to be able to share and learn from someone else who was going through the same thing as me.

This doesn't seem like it's going to be so bad as far as the treatments. The body changes, skin changes, feelings of fatigue, mood swings, and other things we talked about? Well, everyone is different.

As for company and rides? It's something to think about. I don't have to decide now, it's just the first day!! We'll see how I feel on Friday or next Monday.

1 treatment down...32 more to go.

General Info re: Radiation Therapy for those interested Monday am Aug. 16, 2010

Radiation Therapy or Radiotherapy is a treatment that uses radiation to destroy cancer cells. Radiation in low doses is used for x-rays to take pictures of the inside of your body. In high doses, radiation can kill cancer cells, shrink them and stop them from spreading.

Radiation treatments can affect healthy cells as well as the cancerous ones. Reddening of the skin in your breast area and changes in the texture of your breast are quite common. Radiation could affect drainage in your lymph nodes causing your arm to swell. You may have trouble moving your shoulder.

After you receive several treatments, you can feel tired, sore, weak and nauseous. Watch for depression, pain that doesn't go away, swelling, rashes, numbness, bruises, bleeding, weight loss, chest pain, fever, vomiting, constipation, cough, change in appetite, dizziness and diarrhea. Your doctor can prescribe medication that takes care of side effects, so you need to make your problems known.

According to the US Dept. Of Health and Human Services, 20 years of research show that women who have a lumpectomy followed by radiation treatment live as long as women who have their whole breast removed. Radiation treatment isn't painful while you are getting it, and the side effects can be managed.

Radiation therapy doesn't shrink and kill your cancer cells immediately. You can have weeks of treatment before they start to die, and cancer cells can keep dying for months after radiation treatments are over. Some of the side effects can remain for awhile also.

I hope you found this information helpful.

Just Friday with Friends August 13, 2010

Friday was a good day. First the trip for my radiation simulation. Then I went back home to pick up Foxy, get my swimsuit just in case, and headed to spend some time with my friend Jessica and the kids. I always look forward to being there because we have a tendency to laugh more in a couple hours than many people do in a whole week! LOL

Sandy, Sandy and Diane thought up the idea of going out to dinner at the Hearthstone in Muskegon and then to see Eat, Pray, Love on it's first night in the theaters. I had read the book and was looking forward to seeing the movie, especially since I enjoy Julia Roberts so much.

Jessica and I were chatting away and I totally lost track of the time. I had already been there 3 hours and needed to be leaving to take Foxy home, change clothes and get to the restaurant by 4:45. As I pulled out of Jessica's driveway, I called Sandy and discovered plans had changed. The movie was in our hometown theater so we were headed for the new Mexican restaurant again at 6:00 and to the movie at 7:15. Foxy and I had a little down time before I was to meet them.

Dinner was ok, the company was enjoyable and the movie was thought provoking just as the book was. There were several times I found myself emotionally reacting to her thoughts, her character's perceptions, and the glimpses of self-discovery. My thoughts centered more around dreams long ago abandoned, goals not achieved, plans cast aside for responsibilities, sacrifices made for love and support, and wrestling with this annoying disease. Where do I go from here? I don't really have a clue!

Radiation Simulation Experience Friday, August 13, 2010

At 10:45, I arrived at Johnson Center for my radiation simulation. I now just walk back, no longer having to check in with my birthdate and insurance card. As I walk to the end of the hallway, I first pass the room with the CAT scan machine I was introduced to last Friday. The next room is the visitors waiting room for those of you who may drive or just come along because you'd like to. The last door on the right is the women's dressing room with its bright corner grouping of privacy windows, chairs, wall tv, water cooler, and three comfortable, spacious dressing rooms with keyed lockers.

I chose the first one, closed the curtain, removed my clothing from the waist up, put on one of those incredibly attractive gowns again, and then placed all my belongings into the locker, closing it up and putting the elastic band with key on my wrist. Grabbed my book and went out into the room to read and wait.

Grant came to get me about 5 minutes later. I followed him to meet my new machine, the one I was going to get quite intimate with for the next 33 days to follow. There I met Amelia who also helped me get onto the table, adjusted my hips and spine with gentle but firm yanks on the sheet, and assisted in placing my arms into the stirrups above my head.

Looking up I saw the most beautiful display of leaves seemingly pressed into the opague lighting tiles above me. The soft lights behind gave me a peaceful feeling, especially later when the full lighting was turned off. On the ceiling directly above were two lime green neon lights, about a foot in length and arranged in a plus sign. I was intrigued.

We joked around a little and then it was time to get serious about positioning and adjusting the machine according to the treatment plan. The machine has a large "head" that looms over mine and the top of my body. One my right, a blue/gray shiny panel continued to swing in towards my right side, and then go back into its little nook until it was needed again.

Grant asked me to just lie still and breathe normally. He explained that the panel would go in and out at times, the head of this huge machine would be above me and then go down to the left side of me and that the machine would do all the work. My job was to lie still, breathe, relax, and if I liked it, enjoy the music. After they checked the lime green laser lights on my body, they were ready to begin the process.

I was glad the lights were muted. My thoughts wandered to the leaf pattern above accompanied by the soft music on the radio of STAR 108. The machine glided around, starting overhead at first. That's when the lime green laser lights appeared, one running vertically up my body and dissecting the three little tattoo dots perfectly! The second lime green laser light crossed horizontally to form a plus that extended from the outer tattoo on my left side to the one on my right. NOW I understood what those little dots were really for!

They continually came in, took measurements, double checked the positioning, the numbers, the tattoos for accuracy. They took another vis a vis and wrote on me again, making me feel like a human canvas. I just relaxed into what they were doing, totally confident in their abilities and with their perfectionism.

When the 2' x 2' blue panel came nearer to me on my right, I could see the reflection of the lights that were on my chest. There in the right upper quadrant was a bright red laser light...the targeted area. When the machine's head was directly above, there was a window about 4 by 8". Inside I could see two rows of metal bars on each side in the window that reminded me of a mouth harp. There was a "black hole" in between. The radiation, Grant explained, comes through that area and into my breast.

"First, we project the image and give a shot from above. Then we move the machine to the left to get to the area from below to avoid radiating your lung any more than we have to. That will be what you'll experience each time you come in. It will take longer to put you in place than the actual treatment will be."

They moved the machines around more, checked and double checked everything while the other technicians were using the computers behind the wall to observe, follow, and verify. Utterly fascinating! Again, everyone was very pleasant, enthusiastic, kind and helpful.

I know I will have more questions and they are all open to whatever I think up, bless their hearts. But for Monday, I think I will just focus on relaxing, let my mind wander with the leaves and the lights, enjoy the music softly playing in the background, and feel confident knowing that today, the first step towards killing the cancer cells starts with that first beautiful beam of light.

No one will even know you have cancer... Aug. 12, 2010

My emotions are all over the map and my monkey mind is in overdrive! Now to keep people from knowing on the outside so I can deal with it alone when I get home. It's what I do.

A person said to me, with kindness and thinking they were being supportive and helpful..."Since you won't be doing chemo and don't have the bad stuff you were worried about, must be a relief to know you don't have to keep up the blog now."

Maybe no HER2 positive, but HER2 still lurks with 1+ status. Invasive Lobular Carcinoma is the 10-15% least common breast cancer and one they are still learning more about as more cases come up. The cancer threat hasn't left, treatments are looming, and then the pills for five years. That seems like no big deal to some people, but there are possible side effects I am not looking forward to. As for the pills, I also have to remember to take them daily when I've never done that with anything in my life! Foxy isn't too good about giving me reminders either.

The emotional roller coaster rides keep happening, the darn estrogen is still running rampant in my body, and I can't forget what I am dealing with no matter how hard I try!

Aromatase inhibitors haven't been around as long as Tamoxifen and though I believe I won't have a problem, some people can't tolerate some of them. I still have that bridge to cross in about six weeks.

"No chemo equals no problems." Hmmm, why can't I wrap my head around that concept easily? My monkey mind latches on to such ridiculous statements and torments me with them.

Maybe I AM overreacting. It IS just radiation and then it IS just a pill. How can I compare myself to those struggling with much more serious cases? People who have lengthy sessions of chemo, larger tumors, reoccurance in other parts of their bodies, people who are terminal and they know it.

My challenges and this treatment seems so pathetic compared to what others are facing. But again I come back to the fact that, like the others, I did not ask for this. In the past six years I've dealt with loss, ending a job, moving across country and the realization that I am totally on my own. Sometimes, this little tumor might as well be a mountain!

As another friend put it, "Now that you won't be losing your hair, no one will even know you have cancer. How great is that?"

At the time the person said that to me, I thought it WAS great. But now the reality of my situation is sinking in. I know I still have it. I know I have to deal with driving to Muskegon every weekday morning for a treatment at 9:20 for six weeks to try to kill off what may remain behind. I know every night I'll be standing by myself in front of a mirror watching for any changes to my skin, dealing with the soreness, the possible warmth like a sunburn, seeing the left side changing color and possibly even shape from the treatments. None of this seems simple to me.

No one else has to see this, feel this, or deal with it. It doesn't affect anyone but me. As I go through all this, being who I am, I will do my best to treat it as if it were "no big deal".

But as I work to convince you, I'll also be trying just as hard to convince myself.

No chemo but radiation? Absolutely! But why? Sun. Aug. 8, 2010

It seems anti-climactic somehow. All that trauma, numerous phone calls, hours and hours spent tracking down websites of information to help me in my pursuit of answers, money used for a trip I enjoyed but never should have had to make, and time in frustration and nervous confusion. I wondered when I would lose my hair, so I chose not to color it for awhile until I knew for sure I was not having chemo. Then it was the scarf vs wig debate. After the oncologist visit, all of that worry became a mute point.

I know that I dodged a serious bullet and I truly do consider myself very fortunate. But just because I am no longer HER2 positive, and I do not have to endure extensive chemotherapy treatments...things are far from over!

I've started reading about radiation, what will be expected of me and what I can expect from the treatments. It seemed so far off. These past weeks I skim read most of the information. Now, I need to read again.

No matter what I do, this thought returns to challenge me...if my tumor isn't a big concern anymore, why are they so emphatic about me having radiation? Not everyone has had to do this, especially when the cancer is found early. I remember my discussion with the oncologist from Mayo, "chemo really isn't necessary but radiation is a given, definitely!" My oncologist said chemo would do me more harm than good at this point but there was no avoiding radiation. The radiation oncologist said so too and pointed out that without it, I have at the minimum, a 25% chance of reoccurance.

My little tentacle cancer can just shoot out that webbing like a miniature Spiderman! There was evidence of cancer cells both in the tissue and in the blood vessels, and even though none of my lymph nodes showed evidence of cancer cells, they have to irradiate the area to be sure. The first line of defense starts here 8 days from now.

The first dry run is on Friday. It's going to be a long week...

Into the Doughnut Hole and out with Tattoos 2nd hour Fri. Aug. 6, 2010

Patient Joel, one of my new tech team members, came back for the second time to get me for part two, the CAT scan, so Carol N and I said good bye for now. How great to finally put a face with the name and delightful emails I have recieved over the past few years.

Now my Carol and I were following Joel through the double doors in the back and over to the right hand side of the center and the Radiation labs. I could see the darkened room ahead of me, the table covered with a white drape lying before "the doughnut hole" of a large cream colored machine. Never having had a CAT scan before, this totally had my attention and my monkey mind was running rampant. All I needed was a few people to play with and I knew I could make light of the whole thing.

How lucky was I to discover Marcie and Grant, two more of my new regular tech team, waiting for me with smiles and chuckles right inside the door. "Well, looks like you have the laboratory ready and waiting for me. I do hope the bed is comfy." We all laughed, the ice was broken and it was all crazy snips, silly comments, quick wits and bright smiles from here on.

Carol was lead down the hall to the waiting area, the door was closed, and I saw Joel and two others seated in the outer room in front of individual computer screens. Definitely no video games in this room! Seriously dark corridor lit only by the brightly lit screens. I walked a bit further into the larger room where the doughnut machine was waiting. I put my clothes and purse down on the counter and they explained where and how they wanted me to put my body.

"Ok. We need you to put your head right here where we have, well, sort of a pillow. You'll see what we mean when you put your head in it," Grant said. He is a little taller than me, bright blue eyes, blond crew cut and a brilliant smile. "Hmmm, your back is about here and we'll put this pillow under your legs when you are lying down."

"Hmm, you really feel my long torso is going to fit in that small space?" To which we all chuckled but darn if they hadn't judged it perfectly. The pillow was just a neck rest with some side support. Once I was lying down on the table, it became apparent that the room and the table were both a little chilly. Before I could say a word Marcie said, "How about a warm blanket?" and I couldn't say yes please fast enough! I love those things when it's cold.

Next they needed to get my body placed straight on the table, so Grant asked, "Are you going to let us pull and push you around a little?"

"If you think you can do that, go right ahead," and they actually did. A little pull on the sheet under my chest to the right, then a little tug on the sheet jerking my hips gently to the left, until they felt everything was lined up just right.

"Hmm, nice way to practice some dance moves, I guess."

Marcie moved nearer to the left side of my head. "Now we have to get your arms up above your head and secure them so we can take pictures," she said, also with a smile. Her brown hair trimmed neatly, her brown eyes shining and here too, another wide and happy smile.

It was like having greater than and less than signs up above my head with the way they placed my arms. With the support of the bright red stirrups, it wasn't too uncomfortable.

Next,armed with little black vis-a-vis markers, they opened up the top of my robe exposing my chest and the writing began. "Hey wait a minute! If you get to draw and play with markers, where's mine?" I asked. "If you two are going to make dots, can I play too?" We took turns with silly comments and giggling away.

At one point, it felt as if Grant was doing a more intricate drawing on my right hand side so I encouraged him to "make a nice daisy there and then you can put the tattoo right in the center." It was sweet when they both told me they were going to enjoy the next six weeks with me in their morning.

Dr. Tate came in next and indicated some specific areas he wanted to be marked. Then they selected the marker "points", placed a wire on my chest to line up the dots to be made there, taped it down, former memories with wires and surgery immediately crowded into my mind and I couldn't resist.

"You know, when Dr. Lieberman put that wire in my breast and it was standing upright, I wanted to put some beads on it so it atleast had some color. If you are planning to leave this on here, I really think we should decorate it first." I could tell by there reaction, they hadn't expected that one and even Dr. Tate had to chuckle. "Only there for a minute to help us line things up, sorry." When he finished his marks, he wished me well, said he'd see me next Friday and off he went. I was again solely in the very capable hands of Marcie and Grant.

They put some alcohol on the areas they marked and told me they would be using a needle to tattoo 5 little dots or freckles on my skin. It would be a bit like a bee sting, not uncomfortable, to which I replied, "Yeah, I've heard that before. You all have this thing with breasts and needles and they don't make such a good combination. If you have to do this to me Grant, at least decorate it a little bit, at least a music note."

"Hey, it's a nice idea but I'm only qualified to make these little dots but I'll try to put my best copies on you, ok?" He chuckled and started in on the dots. One below my neck about 4 inches, then down two more inches to the left, and the third centered just below my sternum. Certainly not as painful as the circle before my surgery. Next he put a freckle on my lower right side about 3 inches down from my armpit and the same on the left side, which didn't like the freckle as much and let me know it with a little stronger sting. There always has to be one non-conformist!

Afterwards, Marcie told me she had to put a sticker on each of my side dots to protect them during a shower and anything that might rub against them. I asked her which kinds I got to choose from. "If you have Snoopy stickers, I'll take two of those." She laughed. "Ok, that's a new request. Sorry just clear ordinary ones will have to do this time."

It was now time for the peaceful ride in and out of the doughnut hole, which only took about 5 minutes. There was a soft hum at first, nothing at all frightening or unsettling. The sound that came out of the machine the last time sounded a little like a jet's engine revving up. Hmmm...where would I like it to take me right now?

We had a few more quips, a bit of teasing and I knew I would enjoy these trips and visits every day. How wonderful to be fortunate enough to have people care for you who actually enjoy what they do, work together very well, and take delight in chatting and joking with their patients. It's also a blessing to know they are some of the ones who are helping you extend your life!

What an interesting day this has been! Because I thought I would be taking part in chemotherapy first, I hadn't done as much reading on radiation therapy, but I have information from here and Mayo Clinic to help with that. I know there are some things that won't necessarily be so pleasant, but at least the people who will help and care for me, will try their best to make it as comfortable as possible. Who could ask for anything more?

PS: To me, the tattoos look like five little blackheads. They really could use a graphic designer to add a little character to those dots! LOL

Adding to the Team: Meeting the Oncology Radiologist 1st hour Friday, Aug. 6, 2010

Appointment today at the Johnson Family Center for Cancer Care once again but this time, I was meeting Dr. Tate, who I was hoping would be my new Radiation Oncologist. Carol and I met in the lobby about 9:50, I did the usual check in procedure as always, and sat down to wait for my name to be called. She had had a variety of challenging experiences in the past few days so I was totally focused on all that she'd been dealing with. How she fits us all in still amazes me!

I looked up to see a slender nurse in lime green scrubs, one of my favorite colors, open the door usually for the medical oncologists and heard my name. We got up, met Regina who works with Dr. Tate, and headed to my usual first stop...the dreaded scale. After being down eight pounds last time, it was a bit frustrating not to be where I was. Oh well, I have another week to work on it before I have to step on that scale again, thank goodness!

Before Regina could say anything, I just sat down and assumed the position...right arm on the counter, make a fist and get ready for the blood pressure cuff while you shut up, open your mouth and lift the tongue for the temperature probe. Almost got that to clock work now! LOL 97.2 for temp, 121 over 71 for blood pressure...I love it when my numbers are good. Carol took credit for this one saying I was so involved in listening to all her tales and situations this morning I didn't have time to work myself up! She and Walt are darn good at helping with the blood pressure before these tests, that is for sure.

Regina went over all the standard history stuff...again. She talked a little about radiation therapy then explained what would be happening. She set up the computer screen so we could watch a 10 minute video radiation, what the consultation involved, the simulation session, the markings and why they do them, and the reason to have radiation.

After we were finished, she asked me to open the door that we were ready. Dr. Tate soon followed. He was very personable, introduced himself to both of us, then sat down and rolled toward us. Like Dr. Alguire, he too showed he had done his homework, discussing my various diagnoses, knowing about the trip to Mayo, answering questions, and demonstrating he's also a kind and attentive listener.

Did the usual brief examination and discussed his basic plan for today and the weeks to come. He asked if I could stay and get the markings done today so we didn't have any more delay. I was glad to do it, especially when he said he would have the program for the machine ready by next Friday so they could run the simulation. Then I would finally officially start my treatments on Monday, Aug. 16, 5 days a week at 9:45 until Sept. 30. About six weeks or 30 treatments.

The intent is to kill the remaining cancer cells that may be lurking in the breast, those trying to grow and divide thanks to the estrogen still strong in my system, and eliminate any of those cancer cells they did see evidence of in the blood vessels in the tissue. He acknowledged that I had had quite a time getting to this point but that it seemed to finally bring a good diagnosis in my favor. He assured me that he felt my cancer was now a lower risk, that I have a very good prognosis, and that with the Arimidex therapy to follow, I should do very well.

At this point, he took a few minutes to go over what could happen to my skin and tissue over the six weeks; what they have available and can be done to help with any slight burning, itching, etc that may result; the possible side effects that are likely to occur (such as reddening of the skin area, a slight discoloration, rash, likely fatigue in the evening after the third week, soreness, etc)and covered the very unlikely serious things that could happen being that it is near my sternum, ribs, and heart. Then he said he would see me a bit later when I was getting my CAT scan to get the markings done.

As he left, in came Carol Nielsen and that was an amazing moment for me! Carol is the social worker with JFCCC and the one who accepted and shared the jewelry in her breast cancer support group that we made in Beads, Beauty and Beyond. I usually talked with her by email and arranged to drop off jewelry to her once a month. As incredibly busy as she is, we had not had the opportunity to meet. There were definitely happy tears, laugher, and hugs, resulting in a little longer conversation than the technicians had planned.

Thank goodness they are a patient, happy crew. LOL Before we knew it, the first hour was done and then some and we were off to experience part two.

Arimidex...Thank goodness for the Web! Weds, Aug. 4, 2010

My medical oncologist wrote down yesterday that she would prepare a prescription for Arimidex for me to pick up at one of the local pharmacies so it would be ready when I needed it in a couple weeks. I had forgotten my WA insurance carrier has a mail order arm of the prescription plan and what a great thing that turned out to be!

When I first went to my WA website in the wee hours last night, I signed up for access to be able to view my medical claims, and that's not for the faint of heart I assure you. While looking around, I also signed up for my pharmacy access to manage my prescriptions on line and started looking for my new drug of choice...anastazole or brand name, Arimidex.

Searching through the prescriptions I finally found it, 90 day supply only $1037.95! Yep...you read it correctly and that was the mail order prescription. To get it locally, was around $1337.95, when I checked Walgreen's and other pharmacies. The insurance companies consider Aromatase Inhibitors (Letrozole, Anastrozole) to be "maintenance and/or specialty drugs" so there is no shared expense. The whole thing would have been mine. I know it's my life we're talking about here, but with a $300 car payment for another year and a half, I couldn't help but compare my pill to my car. Good grief!

My heart started racing, I'm certain my blood pressure rose AND I had already decided that I wasn't so certain I was going to agree to do the aromatase inhibitors...leave it to me to have to have the fashionable drug at a champagne price!

Funny thing though, I went back to the insurance listing and noticed there were generic boxes underneath the names of the drugs on the Wellpartner site. I clicked on the Generic Box and saw the price: "$10.00 for 90 days". What? There has to be a catch. Pay that to the insurance company and then I'd likely get a sneaky bill later. Come on, I mean the other was over $1000.00!

Now here is the "do you believe in miracles?" part. I started wondering if my medical oncologist would allow me to take a generic version. I went to my search engine and typed in "Is generic Arimidex ok?" just to see what would come up. You are NOT going to believe what I found!

Up popped a post that had been sent in to a oncology nurse practitioner on Health Center, MyBreastCancerNetwork.com, and that was the topic of discussion. "Sharon, there's no generic Arimidex..." is how the first post started. There were posts to follow that were talking about Canadian pharmacies and ordering through them. I know someone who sometimes deals with orders of medicines from Canada who may have helped. But when I reached the bottom of the page, I found what I was hoping for!

Yes, as of last week, there are a number of FDA-approved generics for Arimidex that will cut the cost just about in half or less. Here are the details:

"June 30 - Generic versions of the aromatase inhibitor anastrozole have been approved in the United States, now that the branded product, Arimidex (AstraZeneca), has come off patent.

"The US Food and Drug Administration (FDA) approved 11 generic versions of anastrozole on June 28 from the following companies: Accord Healthcare Inc, Dr. Reddy's Laboratories Ltd, Natco Pharma Ltd, Roxane Laboratories Inc, Sandoz Inc, Stason Pharmaceuticals Inc, Synthon Pharmaceuticals Inc, TEVA Pharmaceuticals USA, Three Rivers Pharmaceuticals LLC, Watson Laboratories Inc, and Zydus Pharmaceuticals USA Inc."


I then took another minute and went to the BreastCancer.org site and found a thread where women were specifically discussing where they had purchased the generic brand. They listed different pharmacies as well as WalMart, Costco (the least expensive and reasonable so far) and all the things they had encountered.

I contacted Wellpartner this afternoon. They assured me their distributor gets the supply from a US Pharmaceutical company and yes, now that the generic version is available, my cost really would be $10.00, every 3 months.

A little reading and once again, I have learned and benefitted from the experience of others. As you can see, I am certainly NOT the only out there asking questions, seeking answers, and sharing with others so we all have it just a little easier. It is an incredible network...thank goodness for the computer and the web in which we are all connected!

Definitely Confirmed: Third Time IS the Charm! Tuesday, Aug. 3, 2010 AM

Dang I am a complicated person...and no comments from the peanut gallery! LOL One last treatment change but, as Professor Higgins once said, "I think we've got it!"

Met with my Medical Oncologist, Dr. Alguire, today to determine my final treatment plan. She did her homework, as did I, and we had a very fine discussion. I truly appreciate the way she listens, feel completely confident in her judgment, sincerely respect her medical expertise and appreciate greatly her patience with my questions...and I had a few.

There was a notation in my Mayo path report that "Angiolymphatic invasion was present" and on looking that up on line, I discovered: Angiolymphatic invasion means that the pathologist was able to see cancer cells in the middle of blood vessels. Chemotherapy is used to treat any cancer cells that may have left the tumor to settle somewhere else.

We discussed chemotherapy and after she clarified a few points, I was completely satisfied and comfortable, both in regards to HER2 1+ status, the possibility of floating hidden cancer cells elsewhere and what is best for them, and with her general explanation of what she felt would be in my best interest.

Because of my high levels of estrogen for one thing, the chemo could possibly be more harmful to me at this point than be of help, even to the point of increasing my risk of cancer reoccurence. Didn't take a rocket scientist to figure out what to do after that point was made! We completely agreed that the "four hits of chemo" that had been recommended before and discussed previously were out!

On Friday at 10:00 am, I have my first consultation with Dr. Tate, who will be my Radiation Oncologist. I told Lindsey, the check out receptionist, that I needed to arrange this. She went to Radiation, rather than wait on the phone, and got me the earliest they had so I could get started. This takes place right there at the Center. It was wonderful to have that scheduled AND she even got an appointment with Mercy Hospital Imagining department to have my Bone Density tests done next Tuesday. I LOVE "one stop shopping!"

The consultation specifics: The documentation for my consultation visit at JFCCC is very thorough. My family and I will be escorted into an examination room by my radiation oncology nurse. She will discuss health history, do a head to toe assessment, discuss what to expect during the visit and will show a patient teaching DVD so we will be better informed regarding radiation treatment prior to meeting my physician. While the nursing visit is underway, my Radiation Oncologist, Dr. Tate, will be reviewing my X-rays (have fun, Dr. T, there are quite a few!) and chart information. When it is his turn, he'll introduce himself to all of us, perform a physical exam, and give his recommendation as to my treatment plan, along with the benefits and associated risks. Questions are encouraged and welcomed. They encourage my family to accompany me during this visit which will consist of 1 1/2-2 hours.

I have bone density tests to be done next Tuesday morning at Mercy Hospital, but I can do that very well on my own.

My understanding at this time is several weeks of radiation, five days a week, number of weeks will be determined during this consultation on Friday. IF I need company, some of you have already offered to drive or be with me and I will definitely be calling you without hesitation if it becomes difficult for me...promise!

Dr. Alguire suggests I take an Aromatase Inhibitor, Arimidex, for the next 5 years. That's a totally different one from Dr. Batts (Tamoxifen) and Dr. Goetz (Letrozol/Femara). I had been concerned with what I had read regarding Tamoxifen,that it would not be as effective for me. Tamoxifen is best for women who have NOT already gone through menopause and Dr. A agreed. The Letrozol would be the second option for me IF I can not, for some reason, tolerate Arimidex. Arimidex is one AI that Dr. Alguire has had a lot of success with and has a lot of patients currently on this regimen, which is comforting in itself. Hard as it might be to believe with all the research I did, it is the one medication I DID NOT read up on. Leaves me with something else to find out about and I have time before I start it anyway.

Radiation isn't going to be a piece of cake, I know that already and I am sure you will hear about it here. But after that is over, I will be taking a daily pill for the next 5 years. As she said, "Basically Donalee, from all outside appearances, no one will even know that you have cancer or are under current treatment for it."

From chemo/radiation/tamoxifen to heart challenging Herceptin & chemo/radiation/tamoxifen/AI to radiation/AI...I've have walked a very, very long and sometimes stressful road! I've dropped from being a highly aggressive HER2 3+ positive to a milder but still present HER2 1+ and I can definitely live with that! No matter what you do, there is always a chance for reoccurance, but right now, I couldn't have a better prognosis.

It's been 3 very, very long months...but I came out ahead for it all in the end. It was worth the trip to Mayo and all the studying, crying, babbling, and frustration to finally reach this point. I am humbly grateful to my family and sincerely thank all my friends for supporting and encouraging me to do what I felt I had to do.

Even though it is a pill, it will still be an adventure. Through the radiation and along this road awhile, there will be more to say I am sure. There are bridges yet to cross and experience. This journey is far from over.

But I see what Ann meant by "feeling lucky"...and I am feeling incredibly lucky right now!

Up, Down, Up Weekend finally ends...... Sunday, Aug. 1, 2010

Friday: It was nice to unwind on the deck of the American Legion in Grand Haven on Friday night under the shade of a umbrella with a couple of entertaining friends. Covered a lot of different topics, enjoyed grilled hamburgers and chips, and a couple cold beers to pass the hours that ended up being about four by the time we headed for home. The evening was very pleasant, the various boats delightful to observe, and plenty of people enjoying the view along with us.

This was another time when I experienced that quick trigger of response when asked about my cancer. It is almost like a performance sometimes and it frustrates me. I have to practice getting it down into something simple, without all the "if I do this then this might happen, or if I do this" blah, blah, blah. It's not important but yet, at the same time, I want people to understand it isn't simple either. Things just bottle up inside of me and when someone asks, out it comes with too much air, too much thought behind it so I overprocess...something I have been accused of and admit to doing quite often when I think about things.

Part of me wants to be as open and honest with people as I can. But I don't like that I am having difficulty emotionally controlling how I communicate the information. Of course, I had already gone over everything with my late husband's cousin earlier in the afternoon and I was more wound up than I thought. Another bad habit of mine. I get too high-strung and then, like a guitar string, snap at unexpected times. I wasn't angry in my response in the evening, just began to spew, repeat, and rapid fire explanations that made a short story WAY too long! In retrospect, it is almost like I had an attitude of arrogance, nonchalance, and hiding my fear all mashed into one poorly acted role for which there was no reason to act. How embarassing! Wouldn't like to be in my head right now would you?


Saturday, was very low key, down day once again and I really don't care. Not feeling like I can handle a whole lot right now; checking out special websites that are supposedly created to bring new people into your life and instead I am left feeling less confident about myself; thinking ahead about things over which I have no control either and also rolling over why am I here and why should I stay? Escape...Foxy and I went for a ride but things didn't look much better when we got home. Another rough night sleeping and Tylenol PM doesn't work anymore, at least not when it is warm and my monkey mind won't sleep. Thank goodness there is another day after this one!


Sunday, Better outlook on life today. I spent the morning pulling weeds, which was good for Foxy and for me. Priced air conditioners on line, did two loads of wash and removed some of the downed branches from the backyard. In the afternoon, I started working on the blog, determined to finally clean up the installments I had started long ago with a deadline to get them finished before I crawl into bed tonight.


I did take time out to join a good friend for a movie around 7:00 in Muskegon where we watched Angelina Jolie perform some amazing stunts in "Salt". It definitely had you on the edge of your seat at times, consistently trying to figure out the plot and the bad guys, and kept your mind engaged for the entire movie. No matter what the critics said, we enjoyed it along with the popcorn and drinks for dinner.

This is another friendship that is special and important to me. Though advice is always available if I need it along with a compassionate ear, I am trying to avoid the cancer discussion whenever we get the opportunity to spend time together. I have that many minutes or hours when I completely forget that there is any illness in my world. I enjoy the lighthearted laughter, learn different things, exchange ideas and have honest conversations I can count on. It is always a refreshing diversion for me and one I truly consider one of my "happy places". I want to keep it that way.


Regarding The Blog: It's unlikely there will be something written here every day...my life just isn't that interesting, pretty ordinary most of the time. Some days, it's just Foxy and me doing the home things most everyone else does.

But when there is news, or feelings, or I feel like rambling again like this...

I will be here.