Thursday, November 18, 2010

You are never going to believe this....

This is a blog that I never thought that I would write. Today is Thursday, November 18, 2010 and my breast cancer has returned. The past week has been a whirlwind of tests and doctor visits, and it was not until yesterday at approximately 3:00 PM that my immediate future was revealed.

Take a few deep breaths (I've had to take many) and I'll try my best to explain what has happened. Friday, August 20 was a VERY exciting day. It was my last Herceptin treatment.(refresher-herceptin is the year long chemo infusion that I was receiving once every three weeks after my chemo, bi lateral mastectomy, and radiation) The nurses blew the farewell bubbles (it is a right of passage when you complete your treatment) and I was in a big rush to leave. Finally, I could put this all behind me! The nurses burst my bubble (literally and figuratively) when they informed me that I would still needed to "check in" and my first post treatment check-in would be October 11. Okay, sounds great, and I rushed out of camp chemo with a huge smile on my face. School was starting after Labor Day and I was had lots to do! I closed the door on my illness and readied myself for the onslaught that a new school year always brings.

The next six weeks passed in a frenzied blur. New students, new staff, and a brand new year of fifth grade! I barely thought of the word cancer anymore. A week or two before my October 11 checkup, I noticed an unusual hardness in my left breast and actually pointed it out to some of my friends at work. I even made them feel it, just to reinforce to myself that I was not making it up. I truly didn't think too much about it, and just figured that I would mention it to my physician assistant, Suzanne at the checkup. About this time I also started to notice a slight swelling in my left forearm, and immediately thought that lymphedema had struck. (this is a very common side effect for women that have had lymph nodes removed and were given radiation.The lymph fluid does not flow through your limbs due to the removal of the nodes and therefore remains in your limb causing the swelling) Most breast cancer patients that have had my course of treatment are constantly on the lookout for this. It can happen at any time, even years after inititial treatment.

Fast forward to October 11. (7 short weeks later) I waltz into the checkup smiling from my head to my toe. I was feeling pretty darn good! During the checkup I mention to Suzanne that I have a weird hard spot, could she please look at it, and while you're at it, my arm seems to have swollen a bit too. She seems puzzled by the hard area and tells me that I should have my plastic surgeon take a peek. We figured it was somehow implant related. And the swelling, yeah, probably lymphedema. Keep it elevated and possibly I would require some physical therapy to manage the swelling. (no known cure for lymphedema) Plastic surgeon? Okay, I can handle that.
I drove directly from camp chemo across the street to Dr. Ali's office and "firmly" asked to see him right then. I decided that I would wait as long as necessary, but I was not leaving until he saw me. Luckily, he saw me right away. He examined the hard area, and was the first to mention the word "fatnecrosis" to me. What the heck is that? (see, you DO learn something every day!) He informed me that this was an extremely common side effect with women that have had B.C.
(What? ANOTHER ONE??) and radiation. The scar tissue and fat form a rock hard area which feels exactly like what I am experiencing. (Ok, that doesn't sound too bad) He told me to take motrin 3 times a day and put a warm compress on the area, and come back in one week. I also mention the swelling in my arm is starting to hurt.

I followed his directions to the letter, but sadly when I checked back in with him, I told him that nothing had changed. He re-examined me, and he had a very puzzled look on his face. I could tell right away that he was concerned. I finally asked what I had been afraid to. "Is this normal?"
"No." he told me. The panic started here. He told me that he was sending me for an ultra sound and this would determine what it was. GREAT IDEA I whole-heartedly agreed. He also wanted me to make an appointment to see Dr. Kirby (my surgical oncologist...more panic setting in) Off to the ultra sound a few days later. I explain to the technician why I am there, and she performs the test. Can you see anything?? Can you tell what the lump is?? Her words comforted me when she said, "It does not have the characteristics of cancer. But let's have the radiologist read the results before you leave. I know you are worried. (you have NO idea) She comes back and tells me the good news...he confirmed what she had told me. Good news! On to Dr. Kirby.

While I'm waiting for my appointment with Dr. Kirby, I receive a letter from the hospital giving me the results from the ultra sound. The letter stated that the mass was, "Benign, but undetermined." Undetermined?? No, not acceptable. I will talk to Dr. Kirby about this.

October 26th I am in Dr. Kirby's office. I ask her about the "undetermined" area from the ultrasound and let her know that I'm not comfortable with that word. I listen to her tell me all about fatnecrosis. Yup sounds right to me. Then she informs me that to be sure, we will need to biopsy the area. Biopsy? Alright, she's done that before... right here in the office. She tells me that this is the only way to know 100% what the hardness is. Sounds like a plan...let's get this done. I don't find out for a few days that this procedure has to be done surgically in the O.R. (silly me, thinking I'd lie down on the chair in her office) due to my implants. This means a few more days off from school, but it will be fine. (Remember, during all of this I am responsible for a living breathing class of fifth graders which are challenging my limits as a teacher each and every day)
Once again, I mention that my ever swelling arm is really bothering me now. She reassures me that we need to take one thing at a time and we will deal with the arm after the biopsy.

Thursday, November 4th. Biopsy day. My husband takes off work and drives me to the hospital. I have a very eerie deja vu. I do not like being wheeled into an O.R. All those people in surgical garb, and you can't see their faces. It's creepy and it's cold in there. I secretly hope that they will quickly put me "under." I wake up in recovering feeling a little out of it. Apparently I called my sister (the now famous Melissa that rescued me when I feinted in the shower after my first surgery for those that have read my blog before.) and she told me that I would not remember calling her...which of course I do not! lol Now I just hurry up and wait for the results.

5:30 PM Monday, November 8th. I go and pick up my VW bug (which has been in the repair shop for two weeks getting a new ENGINE. Don't ask...that's an entirely different story) and happily drive home. (Happy because I've been bumming rides for two weeks) I get home to find FIVE messages on my answering machine. They are all pretty lame except the last one. It's from
Dr. Kirby. Dr. Kirby?? It's now 5:45 in the evening and she left the message just a few minutes before I got home. The message says, "Please call me as soon as you get this message. Even though it's after hours, and I'm at the hospital, please have the answering service page me." 5:45? Call her? Page her at the hospital? Oh no...there is not a doctor alive that tells you to do this if they have GOOD NEWS to share with you. I make the call. I am standing in my kitchen, alone, with my dogs. I still have my work clothes and jacket on. Dr. Kirby answers the page and then asks me if I'm at school or at home. Home. My world falls apart with the news. It is back.

Lets skip forward past the hysteria (yes it happened) and where she told me to make an appointment to see my oncologist the next day. I'm in his office half listening, half not even believing what I'm hearing. I hear, "round of scans" and try to focus. They are pushing me through STAT and will need CT, bone, and MRI scans which have been scheduled for the next two days. I show up and do what they tell me. I have been injected twice with radio active crap and chugged two bottles of barium (hmmm I guess the skill of "chugging" has finally come in handy!) I now hurry up and wait again. I'm told to call Suzanne on Friday for the results.
Needless to say, not much sleep occurred during those days.

Friday November 12th I continuously check my phone. I receive an odd message from the hospital NOT Suzanne. The cryptic message says they are calling me to schedule my scan on Monday. What scan? Monday? I give them a call and I am informed that I am having a PET scan on Monday evening at 9:00 PM. Seriously? Alrighty but I'm not even sure why I'm having it (let alone at that ungodly hour) and give them the necessary information. Sometime later in the day I finally hear from Suzanne. She tells me that 99% of the scans are good news! My bone scan is clear and the brain scan is also clear (I guess that was not the time to make a joke about the fact that my brain in most decidedly not normal) but the CT scan showed a "speck" (her words) on my lung, which means I need the PET scan to find out what it is. She's sorry I heard it from the hospital before I heard it from her (yeah, me too) and I should probably move my new round of doctor appointments from Tuesday, Nov. 16th, to Wednesday the 17th. This way "they" will have all of the results and can formulate my "plan of action." Hurry up and wait some more.

2:15 Wednesday, November 17. I am sitting with my husband, Dr. Krishnan (oncologist), Suzanne (P.A.), and Andrea (breast cancer patient advocate) in the examining room. My entire family, plus dear school family and friends are waiting with their cell phones to hear the news.
The news is good, well, as good as one with cancer in their body (again) can hear. It is being called a "local recurrence" and it is not present anywhere else in my body! (HUGE HUGE HUGE
sigh of relief) We do not know why it has come back, but it is here and we need to get RID OF IT
(again) ohhh and remember that swelling in my arm???!!! Apparently it's not lymphedema.
The tumor (what an UGLY word...I will from this point on refer to it as the GROWTH) is pressing against my lymph nodes (the ones I have left anyway) and it is compressing them and not allowing fluid to pass out of my arm..hence the swelling!!! I need to start chemo this TUESDAY at 9:00 AM. (I asked to start sooner, but my meds will not be there until Tuesday) and they believe that once the chemo shrinks the growth a bit, the lymph nodes will spring back into action and my swelling will go down. (my arm is really really uncomfortable) I will have three rounds of chemo, spaced three weeks apart (last time they were two weeks apart) and after the third treatment, I will get scanned to see how the growth is responding. Depending on the findings at that point, I will either have surgery to remove the growth (which hopefully will be smaller at that point) or I will continue on chemo awhile longer.

We are going to take this one step at a time. It's not like I haven't been down this road before. Oh yeah...I'm losing my hair again. Oh's only hair and we already know how I look without it, so no biggy this time. Break out the knitted hats (again)

I will update this blog regularly. It seems to really help me to write it down, which in turn seems to sort everything out for me. I'm sure you have a million questions. I know I do. I just know how important all of you are to me, and I CANNOT do this alone. I need all of you to help me fight this again...because FIGHT I'M GOING TO DO! For goodness sakes, I need to a long long life, especially long enough to see one of my daughters with a BOYFRIEND (not even thinking husband!) so....let's get this done!!!!



  1. thanks mom. we're all working on it. hahaha. LOVE YOU! we will beat this!!!!!!!!!!!!

  2. Joanne - Thanks so much for the update. I've been thinking about you constantly since I heard the news. You WILL beat this. You are one of the strongest and most positive people I know.
    And, they say that mental attitude has a huge effect on our health. Love and hugs to you, Kathy Butler

  3. Sarah Sheiman HoffmanNovember 18, 2010 at 3:20 PM

    Your East Coast family is praying for you and thinking about you all the time. We are all sending lots of positive energy your way. I always think of you with an upbeat attitude and with a smile on your face. Keep the attitude and keep that smile going. You are a very special lady.

  4. I heard about this last week and have been praying for you for good results. Sounds like you may have it under control. You always have such a good attitude that I'm sure you will beat this again. Just sorry you have to through it again. Let me know if there is anything I can do. Karen Pollock

  5. Hi Joanne,
    I've been thinking about you and all the fun we have had in HS and St Lucia and dancing and skiing. We will have to get together again to laugh about those fun times, like the time we were stalked by wild dogs on a ski trip. I recently wrote about that event in a writing class I am taking. Call me anytime if you want to chat. I am still in SF.

  6. Joanne, it's Susan (aka Peeverly, Andovercookiemama). I'm so glad I checked your blog! I've been thinking about you lately since we reconnected on cakecentral. I'm also glad that you pursued the swelling and that it turned out to be a localized recurrance. I'm sad that it's a recurrance at all but if it has to be, than local you will handle. I will check in with your blog frequently. You are in my thoughts. xo Susan

  7. rachel Goss HolzbaughNovember 18, 2010 at 5:10 PM

    LOVE and LUCK !

  8. Hi Joanne, I just heard the news and I want you to know that I'm here for you if you need anything. Remember, I'm just around the corner! You are such an inspiration to so many people. I KNOW you will beat this there's no doubt in my mind! Hang in there!

  9. Joanne,

    The retired RIverside girls are with you!!!!! Call if you need ANYTHING.

    Becky M

  10. Thinking and praying for you. I'm here if you or Jess need anything at all!

    Ashley L

  11. Hello Joanne,
    Its been a loooong time! And I was literally thinking that the other day... that we haven't been in touch in so long. Since I'm no longer on CC, and I haven't received blog updates from you (which I distinctly remember thinking was the best news - i.e. "no news is good news." ) But this morning I was shocked, along with you and everyone else to read your latest update. I'm so very sorry to hear that you are being put through the wringer again. It just seems so implausible!
    Please know that I am here sending you loving and encouraging thoughts. You are such a fighter, with an incredibly positive attitude and sense of humor -a true inspiration.

  12. Please know and take comfort in knowing that you are loved by so many and prayers for your comfort, courage and strength are being asked on your behalf. We'll be sure and frequent this site and check our email for updates on your newest journey to c-less life yet again.

    ...can you still taste coffee or chocolate?

    Shannon Wikle

  13. Oh, Mrs. Sheiman- Who else could write such an intriguing, seemingly upbeat blog after finding out they are going into the ring for round two??

    I have to tell you that in the past week or so Emily has mentioned twice that she was worried you were "sick or something." She said your car hasn't been at Riverside and you hadn't responded to email.(maybe she's stalking you??) I guess she was right.

    I think quite often about the wonderful things you did for my daughter and I know that with your strength, integrity, and all the prayers going out to you, you will be fine- I'm just sorry you need to deal with this AGAIN!!

    Em and I will be checking this on a regular basis- and looking forward to your narratives!!!!!!!

    -Kristin and Emily Ashley

  14. I know of no one else who has more of an "I can beat this again" attitude other than YOU!
    You have the backing of a multitude of people who would walk on hot coals for you!
    You DO have the power!!!
    If I can be of ANY help, let me know!