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.