Tuesday, December 30, 2008

Inspiring Words

Hi, everyone! I'm back to feeling my normal self and don't have to go to my next chemo until one week from today and so have some time to enjoy feeling well.

It's been a bit of a rough day emotionally for me. I met Liesl, a teacher friend from school, at Starbucks. We talked for almost an hour and a half. It was a wonderful time, but when we left I was headed home and she was headed up to school to get ready for next week. I was so jealous. Then, when I came home, I exchanged emails with the teacher who is going to take over my class for the second half of the year. She is so sweet and caring and enthusiastic. I know she is going to do a wonderful job and that the kids will love her. But, again, it just left me feeling sad.

I've joined a listserve that is made up of women and families who have or are battling Inflammatory Breast Cancer and through this list I've learned that it is possible to be a long-term survivor of this disease. They don't really talk of curing it, but there are members of the list who have been without evidence of disease for over ten years. This gives me so much hope. Many members have also talked about how the chemotherapy part of the treatment plan is the worst and that the surgery and radiation afterwards aren't nearly so bad in comparison. This is also very encouraging. If everything continues to go smoothly for me and according to plan, I should be finishing up radiation this summer. If that is so, I am thinking I will be able and ready to return to the classroom next year. Focusing on that helps me deal with missing it so much right now. When I first started researching IBC and the prognosis, I didn't think I was ever going to be able to return. Now, I know that there is a good chance I will be able to.

I'm always amazed at how, just when I'm feeling low, something happens to pick me up again. That happened again today. My friend and neighbor, Mary Lopez, sent over a Christmas present and with the card she enclosed something called The Optimist's Creed. It is written by C.D. Larson. The words were just what I needed to hear. I asked Mary and she said it was fine to share them on the blog. I think you all will find them as inspiring as I have.

The Optimist's Creed

Promise yourself:
To be so strong that nothing can disturb your peace of mind.
To talk health, happiness, and prosperity to every person you meet.
To make all your friends feel that there is something worthwhile in them.
To look at the sunny side of everything and make your optimism come true.
To think only of the best, to work only for the best, and to expect only the best.
To be just as enthusiastic about the success of others as you are about your own.
To forget the mistakes of the past and press on to the greater achievements of the future.
To give so much time to improving yourself that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.
To think well of yourself and to proclaim this fact to the world, not in loud words, but in great deeds.
To live in the faith that the world is on your side, so long as you are true to the best that is in you.

Love you all tons!
Until next time,

Thursday, December 25, 2008

Merry Christmas Everyone!

We just wanted to let everyone know I'm feeling 100% better and to wish you all a very wonderful holiday!

With all our love!
Joe, Martha, Janaya, Joey, and Michael

Wednesday, December 24, 2008

Update From the Doctor

Well, at least there's a reason why I'm still feeling poorly (that's the only nice word I could think of to describe how I'm feeling right now). The doctor's office just called and yesterday's blood test shows my white blood count at 0.9 when the normal is 4-11. This means no pedicure. :>( No fresh fruits or vegetables. No fresh cut flowers. Limited visitors. Lots of hand washing. Monitoring my temperature. And an antibiotic. Please, please don't let it create any more havoc on my stomach!

I do get a shot after each chemo treatment called Neulastin which stimulates my bone marrow to produce more white blood cells and it should be kicking in any time now, so hopefully this is short lived and I'll be feeling better in no time.

Till next time!
Tons of love!

Slowly Turning the Corner

Good morning, everyone. I was going to wait until this evening to write, but got worried I'd tire out and not get it done. It's been a long, slow week recovering from the chemo this time. Yesterday and so far today have been better, but I'm usually pretty much back to my normal self by now, but am still feeling the effects. I guess it's a result of adding the third chemo drug. It's been pretty much like the first two times. A crampy belly was added to a nauseous stomach, the bad taste in my mouth is taking forever to go away, and I'm getting terrible hot flashes. I've been told the chemo will make me go through menopause, so I'm assuming that's what the hot flashes are. They're awful! It's like someone takes my internal thermostat and cranks it up ten degrees! One good thing about being bald; I just tear off my hat or wig and that provides some instant relief. :>)

The only other new thing is being unusually teary. About nothing really in particular except for feeling sorry for myself. This isn't my normal personality and I think it may be a result of my blood counts being low and my energy being sapped.

This is where I stop complaining and get to what I really wanted to write. I can't even begin to describe to everyone how much your notes on the blog or emails or cards in the mail or just knowing people are thinking of me helps. People tell me I'm strong and brave, but I'm really not. It's all of you and my family that give me strength and help me to feel brave when the worries and doubts and self pity start creeping in. Your words of support and love and encouragement mean more than I could ever express. I reread things all the time when I need a pick me up. I still haven't made my way through my blessing jar. I save it for when I'm really feeling down and it always picks me up. Every time I read each of your notes, I want to respond personally to you and tell you how much your words mean. I'm sorry I can't do that and hope that in some small way this blog lets you know how much I appreciate and thrive on your words and the sentiments behind them.

The meals people have been bringing over have been awesome! The Francom's dropped dinner over two nights ago and Joey was leaping around the kitchen. "I love getting all this food!" he yelled. My family has never made much secret of what they think of my cooking abilities and think at least one benefit from this whole ordeal has been the culinary windfall for them! :>) "And, Mom, do you notice, not one person has brought over meatloaf?" Now, I personally think I make a pretty mean meatloaf. Really, Texas Roadhouse where Janaya works just recently started serving meatloaf and I think it's my recipe! It's one of my favorite meals. But, everytime I cook it I have to make all their favorite side dishes in order to get them to stop moaning and groaning. So, thank you to everyone who has brought over food. It is very greatly appreciated!

I'm pretty sure the Francom's read my blog and I wanted to take a minute and write a personal message to Desiree. Desiree was in my class this year. Her dad teaches at Gilbert El. and her mom and I went to school together. They brought dinner over this week. I was still feeling pretty under the weather and the dog was very interested in what they had brought (almost as interested as Joey!) so I was a bit distracted. Desiree hand made me a beautiful blanket and pillow and I just took them from her and put them down without really looking at them until after she left. Desiree - I love them! The love and care you put into them is so evident. I will use them often and think of you and know you're thinking of me every time I do. Thank you!

I'm off today to get a pedicure. Everything else about me screams cancer patient right now, so I thought it might help if I can look down and see pretty toenails. Then, this afternoon I plan on finishing up wrapping presents. My principal, Sheila, is bringing Christmas Eve dinner over from the school. I can't wait to see her. I've been up to school twice since I officially left, but didn't have the opportunity to see her either time.

I want to end with something that conveys my feelings for all of you, but I've never been very good at sentimental things. Please know I love all of you and hold you all close in my heart. May your day tomorrow be filled with love and joy and many happy family memories.

Till next time,
Love you all tons!

Wednesday, December 17, 2008

Change in Treatment Plan

Well, we went for my chemo treatment yesterday and as usual saw Dr. Polowy first. I told him I wasn't seeing any change in my breast and that the underside of my upper left arm had become very sore to touch or if I reached for anything with that arm. I had had a similar discomfort before I started treatment, but it had gotten better after the first chemo. My constant fear is that the chemo isn't working as well as it should and the cancer will spread, as IBC is prone to do, before we've done surgery. The negative PET scan and bone scan were true gifts. Many, many people aren't diagnosed until the cancer cells have spread. I am a procrastinator at heart, especially when it comes to scheduling doctors appointments and the initial symptoms of IBC are easy to ignore. I don't know why I was more aggressive about this, but am so thankful I was.

Anyway, Dr. Polowy said the discomfort under my arm wasn't a typical symptom and wasn't really sure what was causing it. I thought doctors were supposed to have all the answers. :>( I do appreciate his honesty. To be safe, he's decided to add a third chemo drug to my present regimen. I also totally appreciate his wanting to be very aggressive in my treatment. This is the drug that I would have started after finishing up the four cycles of the present drugs, he's just adding it now. My schedule now changes to every three weeks. I think this is because it may take my blood counts a bit longer to come back up after. I tried to talk him into continuing the two week plan, but he said no. I've told people this, but once the first week is over and I'm feeling mostly over the effects of the chemo, I start to worry about feeling good. It feels like the chemo isn't working anymore and I'm giving the cancer cells a respite. Dr. Polowy says this isn't true, but it's hard not to worry about it.

Well, that's it. I had to take premeds to prevent an allergic reaction to the new drug, so we had to delay the treatment until this morning. I'll let everyone know how it went when I'm feeling better.

Love you all tons!

Monday, December 15, 2008

Hugs and Laughter, the Best Medicine!

Well, I was right, this past week has been a busy one, but at the same time, a very wonderful one, too.

Last Thursday was my book group's annual holiday party. It was a wonderful time! We started out sentimental with toasting and "clinking" and a few tears and a few laughs, then had a wonderful dinner provided by Kelly, and then got down to the fun. We played Christmas Carol Pictionary. And, laughed and laughed and laughed! It was so much fun. Everyone teased me about being so competitive. My family teases me about the same thing. It's not that I feel like I have to win . . . but winning is more fun than losing, right? I just feel like if you're going to play, you might as well play to win. If I lose, that's ok, I just don't very often. :>) It was a wonderful time and I love the girls in my book club!

Friday night was Joe's work party. It was one of those murder mystery dinners. I had never been to one before. Basically, you watch an Agatha Christie type murder mystery play as you have dinner. There are short intermissions as each course is served. During the dessert course and before the final act of the play you are given a form to fill out guessing who the murderer was, what their motive was, and whether or not they had an accomplice and if they did, who. Then, you watch the final act and find out who did it. It was very entertaining. But, here's the thing. This may be my competitive side coming out, but at the end, they told us they have different endings for the play and the ending they perform is based on who the majority of the audience thought had committed the murder. Well, of course, being the original thinker that I am, my choice wasn't the same as the masses and I was wrong. I lost. :>( Good thing my self-esteem had been built up the night before at book club! Really, it was a very fun night. Joe works with really wonderful people and they care about each other like family. So many people that only have the opportunity to see me a couple of times a year came up to me and shared words of care and support. I'm constantly amazed at the number of people who are keeping me in their daily thoughts and prayers.

This is a picture of Janaya and her boyfriend, Andrew, and Joe and I at the Christmas party.

I got to visit with my class twice in the last few days. I went up Thursday to see the 5th and 6th grade musical that many of my students were in. This was the first I've gotten to see them since I had to leave so abruptly. I was really afraid I would be emotional and cry. I miss them so much! But, they were so happy, I couldn't help but just be happy, too. They were so cute. They'd heard that my hair had fallen out and some of them had seen my picture on the blog. They weren't very good at hiding their curiosity and finally one asked if my hair was a wig. They were amazed when I told them yes. They truly felt like it looked like my real hair which made me feel good. One of the boys was sitting on the bench next to me during the play intermission and was quizzing me about how it stayed on and why it didn't come off and how was it attached. I said, "Shhh. Watch." And took the sides of the wig and wiggled it side to side. His eyes about popped out of his head! I really miss spending my days with them. They are so fun!

Today, I went up for their holiday party. They knew I was going for my chemo tomorrow and so planned it early so I could come. It was a very fun time. I had a chance to move around as they ate and visit and talk with all of them. Read aloud is always one my favorite parts of the day and I got to read them a Christmas story. Then, they gave me a gift from the class. Several different things, but the best part was a blanket that one of my moms made. There are ribbons tied all around the border with each of my student's names on them. I know I will treasure it always. I told them I would take it with me to chemo tomorrow and it would be like they were there with me. They really liked that idea. They are an awesome group of kids. Have I said how much I miss them?

This is a picture of me with my class we took at the party.

As you can see, this past week was filled with lots of laughter and hugs; the very best medicine! My spirits are high going into this next chemo treatment.

Talk to you all soon!
Love you tons!

Tuesday, December 9, 2008

Feeling Better!

Well, it's one week to the day from my second chemo treatment and I'm almost back to my normal self. My stomach has finally settled down and mostly I'm just a little more tired than usual. I told Joe's parents on the phone the other day, the best way to describe the effect of the chemo is that it makes you feel like you've got the flu really bad - restless, achy, and nauseous. It went about the same as last time, lasting about a full week, but at least it wasn't worse. I think it will help emotionally if I can count on one good week in between each treatment. Six more to go before I'm ready for surgery. UGH!

I was able to get out of the house for a couple of hours on Sunday. Joe took me to the Tempe Arts Festival. We had a great time walking around looking at all the beautiful things people make. I think the fresh air did me good.

I spent today catching up on housework. Janaya says I need to get a new hobby, but I can't begin to tell you how good it feels to just be able to do normal things like running the vacum.

This coming week will be a busy one, trying to fit things in before the next chemo treatment - meeting with my book group for our annual holiday celebration, going to watch the 5th/6th grade musical at school (this will be the first I've seen my kids since I had to leave so abruptly), Christmas shopping, going to Joe's work Christmas party, and I've been invited to my class's holiday party. It will be busy, but I'm really looking forward to each of the activities. It also helps keep my mind off of missing being with my class each day.

Oh! An update that doesn't have to do with me! I know many of you are aware of the difficult time Joey had in high school. He has just about completed his first semester at Mesa Community College and is accepted and will be attending NAU starting in January! We are so excited for him! Joe took him up this weekend for orientation (I was so sad to not be feeling well enough to go!) and he is very excited about starting there. He's still not sure what he wants to major in, but will be taking liberal arts courses that he will need no matter what he decides. He loves to snowboard and is excited about being so close to Snowbowl. NAU also offers one credit weekend outdoor classes. He is going to sign up for Intro. to Mountain Biking. I think this campus is going to be a perfect fit for him!

Well, that's it for now. I miss everyone!

Till next time,
Love you all tons!

Monday, December 1, 2008

I'm Bald!

Well, it finally happened, right on day 13 and 14, just like the nurse said it would. I noticed yesterday in the shower that there were a lot of loose hairs in my hand when I ran my fingers through my hair. I had a little crying jag, not so much about the idea of losing my hair, but not wanting to look sickly, like a cancer patient. A few hairs continued to fall out throughout the day, but nothing extreme. Then, this morning, when I ran my fingers through my hair, clumps were coming out.

I was in a much better frame of mind today and decided we'd shave it right after Michael got off to school. My sister was up already. I woke up Janaya so she wouldn't sleep through the fun and we got out the clippers. Janaya was trying hard to be appropriately sober until I told her we had to laugh and have fun with it. I could tell she was relieved. She had been worried she would laugh and make me upset. I'm finding throughout this whole ordeal, the more I can find humor in things the easier they are to deal with.

I decided to do most of the shaving myself. It took hardly any time at all. Janaya took pictures and Pam kept exclaiming how beautiful I looked without any hair! My head is still covered in short stubble. I was amazed at how gray it is! I prematurely grayed in my young twenties and have colored my hair ever since. This is the first time I've really seen how completely gray it is.

I've been wearing my wig all day and am getting comfortable with it. It is somewhat longer than my regular hair (well, a lot longer now!), but the girl who cuts my hair said to leave it this length for now. We could always cut it, but once it is cut it stays that way. Wigs don't grow! I got a terrible headache earlier because it was too tight. We called the wig shop and they told us how to loosen it up and it feels much more comfortable now.

I'm going to try and post two pictures. One is a funny one Janaya and I took after we were done shaving my head. I hope you all appreciate how brave I am in posting it! The second one is of me in my wig.

Chemo tomorrow, so I probably won't write for a while.

Till next time,

Love you all tons!


Friday, November 28, 2008

A Lighter, Funny Note

Ok. Now, here's a funny thanksgiving story! Janaya and I went shopping late Wednesday night after she got off of work. There are six of us here and Michael hates all Thanksgiving food (he ate a ham sandwich for dinner yesterday!) and my sister is not much of a meat eater. So, we were standing at the freezer section where all the turkeys were and saw a turkey roast and thought that would be perfect instead of cooking a whole big turkey. Plus, it would eliminate the need to remove all the guts from the center of the turkey which is always Joe's job while the rest of us stand around and say things like, "OOH gross!" "Disgusting!"

It looked great when I took it out of the wrapper yesterday. It was all wrapped in netting. I placed it in a roaster bag (minimal cleanup I'm thinking) and put it in the oven. Within an hour, the house was filling with the wonderful aroma of roasting turkey. I am not a good cook. To say I'm an adequate cook would be a stretch. I hate to cook. So, I'm feeling pretty proud of myself. Have you guys tried those instant mashed potatoes you can buy in the freezer section? They're made by Oreida. The potatoes are skinned and cubed. You just microwave them for ten minutes. Add milk and mash. Now, the house not only smells like roasting turkey, add in the smell of garlic mashed potatoes, stuffing. I'm bragging to everyone how great the meal is turning out and feeling pretty proud of myself. Time to take out the turkey roast.

You probably know where this is going. Oh my gosh! I never saw anything so gross in my life! Have any of you ever made a turkey roast? It's like all the parts of the turkey no one ever eats all held together with netting. Honestly, my stomach is completely back to normal and I almost threw up! We took it straight out to the garbage! Now, everything is done and ready to be eaten, but we have no meat. I thought about calling my neighbor, Mary, and asking if she had enough extra turkey to feed five people, but decided since I don't even seem a little bit sick right now that might be overstepping my bounds.

Off to the store. I've always complained that Safeway is open on Thanksgiving. Those poor people should be home with their families I'd say. I was sure glad they were open yesterday. We ended up buying a cold rotisserie (I'm pretty sure that's spelled wrong, but the spell check isn't fixing it) chicken left over from the day before. "Bet, you're not selling many of these today," I said to the checkout girl. She agreed that was so. Anyway, we sliced it up, heated it in the oven, and dinner was delicious. I was a success after all!

I hope all of your days were wonderful and that you're enjoying your short break.

Love you tons!
Till next time,

A Thanksgiving Note

Ok. If you don't like mushy, sentimental posts, just sign off right now because that's the direction this one is going in. I spent a lot of time yesterday trying to think of the right words to express what I wanted to say in an eloquent way and it just wasn't coming to me. I decided today to just speak from my heart. I've read things before where people say that getting cancer was a gift and I kind of scoffed in my mind - "That's the kind of gift I could do without!" I thought to myself. But, now that I'm going through this experience, I know exactly what they're talking about. My sister has always been my best friend and I'd always feel a little sorry for myself that she lived all the way across the country. I'd complain to her on the phone, "I have friends, but not any really good friends," "No one to call up and go to the mall with." Oh my gosh! I was living my life with blinders on! I have been overwhelmed with the genuine love and care and kindness people have demonstrated to me over the last two weeks. When Sheila shared her holy water from Knock, Ireland with me I was touched so deeply. That she would share something so precious with me told me how much she cares about me. Carol called me seconds after I posted the news about my test results and she was crying and laughing and just full of elation and I'm thinking to myself, I was afraid to call and see if she wanted to go to the mall with me? Liesl sends me a note every day filled with chatty news and humor and listens to all I have to say without judgement. I can't even begin to describe the wonderful, inspiring words people have written to me in cards and emails. And, my family has been amazing.

Ok. Now I'm going to get philosophical, so sign off any time you want! So, not one of us knows how many days we have ahead of us. Joey works at Sonic and they just had a fund-raiser this week for a young teenage girl who had been killed in an accident by a drunk, illegal immigrant. That sure puts things into perspective quickly! Because I've gotten this diagnosis, I will live each day I have with new eyes and a new heart. And I'm thankful for that and I'm thankful for each and every one of you who cares so much about me.

Love you all tons!
Till next time,

Tuesday, November 25, 2008

My Wig is Here!

Today has been a good day. The first day since the chemo I've really felt almost my normal self. I still get tired easily, but it's not that overwhelming tiredness where all I can think of is crawling into bed. My stomach has calmed down, I just don't have much appetite. Pam and Janaya took me to Dillards and we had the cosmetics lady help me with some face cream and foundation and while we were there the wig shop called and said my wig was in, so next stop was to pick it up. Janaya's really nice friend, Andrea, cuts my hair regularly and she came over right away and cut and styled the wig so it looks almost like my regular haircut only maybe a little better. Much better than this cut that looks like a two year old did it that I got at the no appointment place! Turbans and hats I ordered a couple of days ago also arrived in the mail today. I tried them on and got a pretty realistic vision of what I'll look like a few days from now. Pam tried to convince me to put one on and go and show Michael and tell him my hair had fallen out while he was at school, but my sense of humor wasn't there yet. Today is day eight and the nurse told me my hair will fall out any time between day ten and fourteen. So, I'm prepared physically and emotionally. Honestly, the wig looks so good I'm almost looking forward to wearing it.

Went to visit my regular doctor for a routine follow up appointment. She didn't know about my diagnosis yet. She told me to be positive, let her know if I got depressed, and gave me a flu shot. I wasn't depressed until I had to get the flu shot! Today was the first day in almost a week where I hadn't been stuck with a needle for one thing or another. It really didn't hurt, it just seems like a good thing to complain about! :>)

A really great thing that has happened as a result of all this is two really great friends from high school have emailed me. (Yes, Kip and Jim, I got your notes and was thrilled! I just haven't had the energy to write back like I want to. And, yes again, Kip, I can soooo picture you on a motorcycle! Send me a picture!).

We sent Joe off to NJ first thing this morning and he arrived safely this afternoon. He sure went with a lot lighter heart knowing the test results were negative.

Janaya is making dinner and her boyfriend, Andrew is coming over to eat.

Sorry this got kind of wordy. I started out thinking I'd write a short post about getting my wig. I'll post a picture when I have to wear it for real the first time.

Till next time,
Love you all tons!

Monday, November 24, 2008

Great News!

The doctor's office just called and let us know that both the bone scan and the PET CT scan came back negative! It is hard to describe the relief everyone here is feeling right now. This makes a huge difference in being able to get to the magic day when the doctor's tell us, "There is no evidence of disease." So, THANK YOU EVERYONE who has been praying and sending good thoughts and keeping us in their hearts over the last few days. We are eternally grateful!

Till next time,

Sunday, November 23, 2008

Weekend Update

Well, it is 6:30 Sunday evening and I'm not in bed yet, which my sister pointed out to me is a big improvement! I know I'm feeling better because I want to tell everyone I see, "I don't wear my hair this way usually, really!" I can already tell this disease is going to remove any sense of vanity I had.

Actually, yesterday and today were very good days. I was exhausted yesterday evening, probably because I hadn't slept for more than an hour or two at a time since I got my diagnosis. I finally gave in and took an Ativan the doctor gave me, convinced Joe to take one, too, and we both got some real sleep for the first time in a while.

We went yesterday for my PET CT scan. This was an easy test. They just inject (I'm getting really good at needles!) some kind of glucose stuff (poor word choice my students would be quick to point out to me!), make you wait an hour, and then take x-ray films. This test will tell us if the cancer cells have spread to any organs other than my breast. The technician was really nice and explained the whole thing in lots of detail. When we told him Joe was leaving Tuesday morning to go back to NJ for Thanksgiving, he made it a stat order and we should have the results tomorrow afternoon. Tomorrow, I go for a bone scan to make sure it hasn't spread to my bones. If the cancer has stayed localized to my breast and local lymph nodes, I'm considered stage IIIB. If it has spread anywhere beyond that, it is stage IV. I've read of people who have survived years after being diagnosed with stage IV, but Joe and I are really hoping the tests come back negative.

Pam and I took Janaya to a repo. car sale today because she had seen a Nissan 350Z on the lot yesterday and she wanted to have a closer look. She took it for a test drive and we haggled around with the salesman for a while, but she's not quite ready to make the commitment to a regular car payment. Plus, it was the wrong color!

Then, I met my good friend, Liesl from school, at the dog park. It was good to just talk and be normal for a bit.

I love everyone's wonderful comments. Thank you!

Till next time,

Saturday, November 22, 2008

Ready for Cyberspace

I guess I'm ready to send the link for my blog out. I'm afraid this is going to be about the only way I keep people updated. The chemo is effecting my eyes and I can't read without them getting really achy right away. I can't even look at the computer screen as I type this. This is a bummer for someone who likes to read as much as I do. Joe's siser, Sue, sent me an audiobook. I'm kind of anxious to try it out.

Joe and Pam have been reading all the beautiful and encouraging emails and cards I've been getting to me, but I won't be able to respond to them personally for a while. Sorry. I can't tell you how much they help keep my spirits up.

Much love to all!

Friday, November 21, 2008

Chemotherapy Begins

My sister arrived in time from NJ to go with Joe and I to the new medical oncologist who is covered under our insurance plan. We were all really pleased and comfortable with him. He was very positive and talked about curing this. Many people have told me the statistics don't reflect current treatment. They used to treat IBC like other breast cancers. Now, they start out with chemo therapy, then do surgery, then more chemo and radiation. They are experiencing improved results with this regimen. Even with the poorer statistics, I was trying to be realistic yet optimistic at the same time. At this point there is no reason to think I won't be one of the survivors. If all the good thoughts and prayers and love pouring in are any indication, I'm a shoo in for recovery!

Anyway, the doctor wanted to get started with the chemo right away, which was our goal when we made the appointment. Every day waiting to start treatment felt like a day given to the cancer to have its way.

I got my first treatment Tuesday morning. Getting the chemo wasn't too bad. It just goes in through an IV. I was in a big room with a bunch of other patients who were receiving chemo, too. One thing that amazed, but saddened me, too, was that many of the patients were as young as I am or younger. They gave me medication through the IV to ward of nausea and three different prescriptions to take at home to help. None of them worked! About 3 in the afternoon I was overcome with nausea and it didn't go away for two and a half days. Today, finally, the worst seems to be over. I'm tired, weak, and shaky, but thank goodness my stomach has calmed down. I'm able to take small bites of bland food. The worst thing is the chemo has changed how everything tastes. Even if it tastes ok going in, within a few minutes my mouth tastes like old paste. It's disgusting and I spend a lot of time brushing my teeth.

My sister, Pam, took me today and I got my hair cut shorter in preparation for it falling out. It wasn't too traumatic. This morning was the first time I'd taken a shower since Tuesday (I know, YUCK!) and even after showering blow drying is totally out of the question. So, going bald may be a good thing under the circumstances. Pam, Janaya, and I went cranial prosthesis (that's what they call a wig when you have cancer!) shopping the other day after the chemo before the nausea set in and picked on out. It should be here next week, just in time for when real hair loss sets in.

Well, I'm exhausted right now. Love to everyone!

Tuesday, November 18, 2008

Starting the Journey

It's been four days since my husband, Joe, my daughter, Janaya, and I sat in the medical oncologist's office at the Mayo Clinic in Scottsdale, Arizona and heard the words, "You've got Inflammatory Breast Cancer." I had initially planned on starting a journal to document my experience, but then decided to start a blog so I can keep my family and friends updated.

This journey actually started about two and a half months ago. I was in my bedroom getting dressed after my shower when I noticed in the mirror that my left breast was larger than my right one and was tender to touch. I thought it was odd, but wasn't overly concerned. I was due to start my period and thought it must be some weird hormonal thing. I waited until my cycle ended, but although the tenderness had gone, my left breast remained larger than the right. I made an appointment with my doctor and she scheduled a mammogram which came back negative.

The next step was a breast ultrasound. This showed no cancerous lesion, but did show very dense tissue of both breasts as well as asymmetry and skin thickening on the left. The radiologist said the findings were concerning for inflammatory breast cancer (referred to as IBC hereafter) . My doctor sent me for a punch biopsy the next day. When I saw the breast surgeon for this procedure, he said based on my physical exam there was only a one in a million chance I had inflammatory breast cancer, but he would go ahead and do the punch biopsy which would rule it out definitely. I went to N.J. the following week to visit my sister and while I was there got the news that the punch biopsy was negative. He would order an MRI.

At this point, I was concerned. Something must be wrong, but the tests were all coming back negative. However, based on the surgeon's comments I wasn't concerned about inflammatory breast cancer. I didn't even do any research because I trusted what he said. The MRI has to be done a certain number of days after the beginning of your cycle so more waiting was involved before it was done. Then more waiting to get the results. Finally, I spoke with the surgeon. Again, the results were edema (swelling) and skin thickening. The radiologist's report again said this was concerning for inflammatory breast cancer. The surgeon still didn't think so and told me he would have to do some research. I went home and started researching IBC on the Internet and I knew in my gut this was what I was dealing with. Almost everything the articles described fit. This is when I decided to go to the Breast Clinic at the Mayo Clinic in Scottsdale.

I called Monday morning and when I told them my concerns they got me in the very next day. I saw a nurse practitioner and a surgeon who both felt, based on my physical exam, that I was highly suspicious for IBC. They did a needle biopsy and I would have the results in two days.

Thursday afternoon, I spoke with the Mayo Clinic nurse on the phone. My biopsy showed invasive ductal carcinoma. The most common kind of breast cancer, she told me. At first I was relieved. Did this mean I didn't have IBC? No, that diagnosis was made based on the doctor's physical exam. I was given an appointment the next morning with a medical oncologist.

It is hard to describe all the emotions I felt at hearing the words, "You've got inflammatory breast cancer." It was a confirmation of what I had suspected so I didn't really feel any sense of surprise or shock. I'd done a lot of research on the Internet about this disease and knew that my symptoms matched the descriptions I read. Mostly, there was a sinking feeling in my stomach. I knew from my research that this was a rare and aggressive cancer. The prognosis given in all the articles I read was poor, 40-50% of patients survive five years. It was a bit overwhelming to come face to face with my mortality so abruptly.

We had told the kids the night before about my positive biopsy results. They'd known I was going back and forth to doctors and for testing, but other than that hadn't known what was going on. The boys were very calm. They gave me big hugs. As soon as she heard, Janaya told me she wanted to know everything and be involved each step of the way. She wanted to go with Joe and I the next day to hear what the medical oncologist had to say. I was amazed at the strength and bravery she showed as the doctor explained the pathology results, the treatment plan, and the prognosis. She took notes and asked really good questions. I think it was her strength that helped me maintain my composure.

The few days since have been pretty rough emotionally. Joe took care of telling my principal, Sheila, that I would have to leave work. I knew I couldn't go and speak with her in person yet without breaking down. Not being able to teach is going to be one of the hardest parts of this experience.

The amazing thing has been all the love and support pouring in from everyone. I'm saving everyone's notes to reread during my low moments. It's hard to be down when I'm surrounded by so many good thoughts and prayers.

I will try to keep this updated as I'm able. I'm sure there'll be times when I'm just not feeling up to it, but know there will be good times, too.