3:00 A.M. and a turkey sandwich

According to my computer, it's now 7:18 a.m. but what's a few hours among friends? It's been a restless few days, and I was in my kitchen at 3:00 a.m. eating a Thanksgiving sandwich. A girl has to keep up her strength, regardless of the hour! ;) I hope all of you had a wonderful Thanksgiving, and time was well spent time eating delicious things and visiting with loved ones.

The chemo wave (alright, more like a tsunami) hit on Friday, three days after receiving it. I was down for the count. I don't think I ventured out of my chair for the next 24 hours. Luckily for me, my daughter Rachel was home from college and she hovered lovingly nearby and did her best to make me comfortable. I won't lie, I just plain old felt miserable. When my mother (in NJ) and sister (in Dallas) called to check in with me, I could hear the concern in their voices. "You don't sound very good," they managed to say. Yup, I can agree with that. I'll just sit here and continue watching the Diners, Drive-Ins, and Dives marathon on the Food Network. (I had no idea there were so many types of omelettes around the country and most are big enough to feed a family of ten.)

By Saturday I summoned the strength to venture out of the house with Rachel. (I was afraid that my tv chair was forming around my rear end and would never release me) We dressed and headed to the local JC Penny (I know...contain your excitement) and did a bit of shopping.
I mostly sat on the bench in the dressing room and put things on hangers, but it's a start. It did actually feel good to get up and get out of the house for a bit.

Sunday dawned, but it's hard to tell when you keep waking up every hour or so through the night. I sleep when I can, and eat what I can. Which brings us back to this morning at 3:00 a.m.
I wandered upstairs fairly early in the evening, and by the time I woke up at 3 o'clock, I was starving! Food was the only thing I could think of, so I got up, took the dogs outside, and then I made a sandwich. I felt better and went immediately back to bed.

Thank goodnesss that turkey makes you sleepy after you eat it. It might become my antidote to sleepless nights.

xox
Joanne

Return to camp

(I love my long hair Ajah! xox Hope it looks like this someday!)



As a past summer camper, I can tell you how much you look forward to returning to your second season at camp. You already know the kids, you know the activities, and above all, you know you're going to have FUN! Well, it was kind of sort of like that, but you can get the "fun" part right out of your head. Even I (the eternal half glass full gal) could never, in any stretch of the imagination, refer to chemotherapy as fun. (If there's someone out there that can refute this claim...step forward tin man!) The best parts of yesterday were exactly the same as a return to summer camp. I knew all of the campers (nurses and office staff) and they did greet me with big hugs, words of encouragement (always welcome), and smiles on their faces. They told me in no uncertain terms, "We've done this once, and we're just going to do it again!" "OK" I thought. Let's get this show on the road.

For support, Rachel and Steve went with me. You are technically allowed only one support member in the chemo room with you, but as I was one of the first "guests" of the day, there were empty seats. Eventually as the room filled up (sadly, there are a lot of sick people) Steve moved to the office waiting room. Usually a chemo patient has a port placed under their skin and the infusion lines are just attached to the port. Ports allow easy access to draw blood as well as infuse medicine. But I don't have one! Remember, I was supposed to be finished with all of this and they took it out when I had my surgery one year ago. Ah well, we're going to improvise and see how long it works. I may or may not have to have to port replaced. For now, I will just get the 'ol needle in the arm trick each time I go. This is what it looks like.

Yes, that's me...you can tell by the trio of bracelets that ARE surgically attached to my body. I
will admit, they kind of "soften" the look. Chemo with STYLE! lolol (it's ok to laugh!)

After they've attached everything, the tubes are run to the infusion stand, where your special little cocktail is waiting to be sent directly to you! (No, this is not like when my school staff has special meetings after school, and special little cocktails are sent directly to our table) Then you sit patiently and wait. Tick Tick Tick You wait. Tick Tick Tick. Still waiting. (Students in room 106...remember how I teach you EVERY day that WAITING IS A SKILL THAT YOU NEED IN LIFE? Well, I wasn't kidding!!!) While you are waiting, you can chat with loved ones (thanks Rach and Steve) then you can watch TV. I was watching my favorite show, "ELLEN" and I also chose to be wear my ELLEN shirt, because anything to do with ELLEN puts a smile on my face.
And if one has to go to chemo (for the second time), then one REALLY wants to have something to make them smile., and Ellen is guaranteed to make that happen. Three hours passed by like that (clicking my fingers but you can't hear) OK not really, but it sounded good! My visit this time lasted from 9:00-12:00.

LAUGH DANCE CHEMO

We left for home, but not without a quick stop at COSTCO! Hey, a girl's gotta keep her strength up, and it really was quick, I just needed my Costco bread! Then it was home to my chair, where I spent the rest of the day dozing on and off. I was really tired, but due to the fact that I haven't been sleeping very well lately. I have had a slight swelling issue (slight being an understatement)
with my left arm the last few weeks due to lymphedema (feel free to google..too much info to post here) and it has been painful and keeps sleep away! My doctors feel that my new chemo is going to help with this swelling, and I am happy to say that last night I slept uninterrupted for TEN HOURS!!! I feel soooo much better today! Only difficulties I had during the day were stomach aches that came and went, but one can expect that when one has toxic crap running through their system, right?!

Today I ate some toast with my meds (don't take on an empty stomach... ok I won't, thank you very much for telling me) and now I talking with all of you (which always makes me feel better) and later today I'm going to bake (NOOOO! me? bake? you know I must be feeling alright!) some desserts for Thanksgiving...which is TOMORROW! oh my goodness...time to go...all of you must have some shopping, or turkey cleaning, or chestnuts to roast (do people still do that?)

HAPPY THANKSGIVING TO ALL OF YOU!! I am thankful that I have all of YOU in my life.

xox
Joanne

P.S.
Thought I'd share some amazing cards made by my class. I love you Room 106! As well as cards that I've received from all of you! Thanks for keeping me in your thoughts and prayers.


Each student made a square for me and the card was pieced together like a quilt. They obviously know me
well! (I also have NO idea why this is underlined and
couldn't figure out how to get rid of it...if YOU know me well you will be chuckling right now)










Cards sent to me (?what no underline? lol) as well
as a VERY cute PINK bucket sent from Carly and
"Aunt" ELLEN (lol)

It's official now

I went to my classroom today and saw my students to tell them the news. It's the first time that I've been back, and I was literally welcomed with open arms! I popped into the room right after they had returned from recess. Once they saw me walk into the room there was a mad dash and I had 25 kiddos hugging me from all directions. It was wonderful to see them and I could tell that the feeling was mutual. I was so worried about how to tell them (remember, I've done this before) but they were great! They took the news in stride and had tons of questions, which I answered the best that I could. Then they promptly asked if I'd been in class on Monday! So much for listening skills!

It was equally wonderful to see my school "family" and even harder to leave at the end of the day. The hugs that you gave me said it all. I can't begin to express my thanks to all of you for the love and support that you've shown me. With you behind me, I can (and will ) move mountains.

Mary and Janice...special hugs to both of you for keeping the home fires burning!

xox
Joanne

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 well...it'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!!!!

xoxo
Joanne