Monday, July 27, 2009

Check out the progress!

OK, I know it's not much to write home about, but at least I'm not bald as a cue ball any more.
It's actually more like fuzz but at this point I'm happy to have anything! My husband told me yesterday that it was actually "blowing in the wind!" LOLOLOL I'm thinking it's more like Ronald McDonald hair...you know the way his sticks out straight from the side of his head. It's still very uneven but there is a definite shadow everywhere. I examine it closely everyday and who knows, by the time school starts after Labor Day, there might be actually be full coverage. (even if it's just fuzz) I'll keep you posted...because I know inquiring minds want to know! :-)

Thursday, July 23, 2009

Joanne has left the building...ok the house

My how quickly three weeks pass by. Today is three weeks since my surgery and I know I must be on the mend because I was going stir crazy. I left the house alone for the first time this morning and took a short walk with the dogs. They behaved very well considering I was walking at a snail's pace. I also took another big step and drove myself to the grocery store, which is about a mile from my house. There had to be a first time, and I decided today was the day. I just got a few things that I needed and it felt good to be out in the world again. (I know, the grocery store isn't exactly the world, but to me it felt that way!)

I had my consultation this past Tuesday with the radiologist and she told me that I would begin radiation as soon as the plastic surgeon was done "filling me up." She explained that before radiation treatment can start, she needs to map out the places on my body that will be receiving the radiation. Once she maps the areas, I cannot be changing sizes which is why the plastic surgeon needs to finish what he is doing first. I spoke with him when I saw him on Wednesday to receive my second "filling." Hopefully after my third visit (next Wed.) we will be able to evaluate if I will need a fourth visit or not. I'm kind of hoping that we are DONE after next week. I also had my first infusion of Herceptin at camp chemo and I am happy to report that no side effects surfaced after the treatment. Turns out that my next infusion is not for three weeks...yeah! I also seem to be growing fuzz on my head! You really can't call it hair yet, but I'm happy to see whatever it is.

So all seems well with me and the universe. I'm going to keep my fingers crossed that it remains that way.

xox
Joanne

Tuesday, July 21, 2009

I think thank you's are in order

Good morning everyone :-)

Well, a week has passed since I told all of you about the new "regime" lined up for me that will keep me cancer free. (yeah!) I can honestly tell you that I've ridden the roller coaster of emotions in the past week. In fact, you could say that at one point on my ride, the cart derailed, crashed, and burned. Yes, it was that bad. But....I've found my way out, and can honestly say that it was my family and friends (yes that means all of you) that helped me find my way back.

It seems unbelievable that my journey started only seven months ago. Boy, does it SEEM longer than that. What I thought was going to be my journey's end in a short amount of time, is now not to be. But that's ok now. I'm really not sure why I was chosen to travel this path. The reason may be clear one day, or maybe I'll never know. What I do know is how much I have to live for and that in itself is what keeps me going and brings me up when I'm feeling low. I think it takes a disease like cancer to make you think about priorities and what's important. It all boils down to what kind of person you are and how you choose to live your life. It's a good thing that I've always been a "glass half full" kind of person!

It's really hard to thank everyone who has helped me along the way. But I would like to try my best to thank:

1. EVERYONE that has been reading my blog and following my story
2. Family and friends that have left me words of encouragement on the blog
3. Friends who don't (or can't figure out how) to read the blog but STILL take the time to email
me to find out how I'm doing (you know who you are... and so do I! lol)
4. Friends that check in with me by phone instead of emailing
5. Friends that take the time to send me cards (LOVED the buff muscle guy I recently received)
6. Friends that bring YUMMY Pot Roast (complete with homemade cookies and bags of choc!)
and Chicken Enchilada dinners...right to my house!
7. Friends that take time from their busy lives to pick me up and drive me to the doctor (XOXO)
8. Daughters that call frequently, from far away (MA, CA, IL) to check in on how I'm feeling
9. Mothers and sisters that send a LARGE candy basket filled with nostalgic childhood goodies
(who remembers SKY bars Mallo Cups?)
10. Sisters who give up vast amounts of their own personal time to look after me! (What would I have done without St. Melissa?!)
11. Brother in laws that can be counted on for ANY and EVERY thing if I so need it
12. Mother in laws that send beautiful bouquets of flowers along with hand written poems and
father in laws that worry about me on a daily basis
13. Sister in laws that call all the way from ALASKA to see how I'm doing
14. Dear friends that have volunteered their time to help me get ready for the new school year
15. Friends from far away that send DELICIOUS home made goodies in to me in the mail
16. A husband that tries his best to take care of me and tries to do the million and one things
that I used to be able to do around the house by myself

I know that when I come back to read this, I will remember someone that I've forgotten to write down. But know that in my heart, you are remembered, and that's where it counts.

Each and every day it is because of all of you that I am able to continue to fight this fight. Thanks so much for always being there.

This afternoon I have my first consultation with the radiologist. Hopefully she will let me know when radiation can start, and I will let you know what she says. I also have my first infusion of Herceptin this afternoon which should take about 90 minutes. (only the first round will be this long)

Lots of love,
xox
Joanne

Wednesday, July 15, 2009

More highs and lows

Oh where oh where to begin. First of all, post surgery recovery is going well. I was pretty uncomfortable for a day or two after surgery and I spent a week sleeping downstairs on the pull out (which isn't very comfy) since I couldn't walk up the stairs and I was sleeping sitting up anyway. Six days after surgery I had two of my four drainage tubes taken out (Yeah!) and each day I get a little stronger. After St. Melissa left, my husband, Steve, took over as my nursemaid as I'm still pretty much a lump on the couch. lol He has been doing a wonderful job cooking meals and keeping me hydrated along with anything else that I need. I also have "fuzz" on my head! :-) I'm now sleeping upstairs in Rachel's room and still sleep semi propped up, but it's all good...except for Cubby and Frankie hogging the bed!

I had a round of doctor's appointments this week starting on Monday. My dear friend Mary (from school) picked me up and drove me to my oncologist. This was my first visit with him since I had finished chemo. He examined me said I was doing well and then told us to meet him in the consult room. Never in my wildest dreams did I expect to hear what he told me. (here comes the "lows") Even though I am cancer free (definitely a "high") in order to keep me that way, I must have my port put back in (surgically!) because I need to receive infusions of a drug called
"herceptin" for up to one year!!! I can honestly tell you that when he was telling me this, I was unable to process it. I just looked at Mary (thank GOODNESS she was there with me) and started to cry. Just when I thought the light was visible at the end of the tunnel, it turns out that it's just a dull glimmer. Herceptin is an antibody that targets Her2 Neu, a protein on the surface of certain breast cancer cells. Sadly, my cancer is Her2 Neu POSITIVE. :( Which means that taking this drug will prevent my cancer cells from reforming...which don't get me wrong is a GREAT thing! But I was unaware that this was an option for me, so it came out of left field and left me visibly upset. The infusions will be given every three weeks, except the first three, which need to be given three consecutive weeks in a row to make sure there are no reactions.

OK take a deep breath now. I KNOW it's a lot to take in. But as my mother told me, "Joanne, it's just an unexpected bump in the road, and it's a bump that will keep you CANCER FREE." Of course I said that I was planning on going back to school this Fall, and they told me that there was no reason why I couldn't. That's all I needed to hear. Herceptin is not like chemo. It does not keep hair from growing, or have any of the horrible side effects that chemo does. (Yeah...my fuzz can keep growing) It specifically targets the bad cells and keeps them from reproducing, which is a WONDERFUL thing!!

After the oncologist left the consult room, the physician's assistant came in and I told her how shocked I was to be told the news. Of course I asked why? She told me that nothing about my cancer journey has been "normal" or followed a regularly prescribed route. LOLOLOLOL Mary and I began to laugh, and Mary said, "She's EXACTLY like that a school, and always marches to the beat of a different drummer, why should her cancer be any different!!!!" Of course, those of you that know and love me know how true that is. Yes, I do love being an "ORANGE" person, but who knew that being orange would extend into cancer as well! (for those of you who are clueless...there is a personality test based on the colors blue, gold, green, and orange. When our school staff was "tested" lol I was the ONLY orange person on the staff!)

So, as someone special that I know says, "Onwards and Upwards!" I'll be darned (kids read this blog) if I've come this far, fought this long, to let this get me down now. I will do whatever it takes to get to the finish line. And I WILL be back at school this Fall...just watch me.

Today's appointment boys and girls is with the plastic surgeon where the process to "pump me up" (as our favorite Calif. governor would say) will begin. I also have a consult a week from today to begin my radiation. Is your head spinning? I know mine is! This is the immediate plan:

Port Replacement (back to hospital to have this surgically done in O.R. in a couple of weeks)
Weekly "pumping up" from plastic surgeon
Herceptin Infusion weekly for first 3 weeks, then every 3 weeks after that (back to camp chemo)
Radiation daily (yes I said daily M-F) for approx. 5 weeks (I'll let you know when that will start
after I see that doctor next Wed)

So dear friends, I still need you more than ever! With your love and support I've come this far and I will continue the fight.

All of my love to everyone reading this.
XOX
Joanne

Wednesday, July 8, 2009

Whoops, I've done it again!

Hi everyone! I'm back among the living and recovering nicely from surgery this past Thursday.
Yes, the "third time WAS the charm!" The surgery took place as scheduled, although there was one brief moment where I panicked that it would NOT happen. After the epic road trip to California with Carly, I flew to Dallas for two days to stay with my sis (then she would fly back to MI with me for surgery.) We were inside a Crate and Barrel Store and my husband called to say that I needed to call Dr. Kirby's (my surgeon) office right away! They had phoned and left a message on our answering machine. OK, my sis and I gave each other the panic look and did think, "Oh no, not again." I phoned the office only to find out that surgery had been backed up by 45 minutes. Whew!! We reported to the hospital at 7:15 and they were wheeling me in to the O.R. by 8:30. When I came out THIS time...the girls were gone, and I had had these rubbery strange tubes coming from where they used to be! I guess I was REALLY out of it because I kept telling EVERYONE I spoke to about a cramp in my left leg...multiple times! LOLOL Well, it must have hurt! I spent the night in the overnight ward and was the only patient there, with two fabulous nurses at my beck and call. One of them asked me, "Do you like chocolate?" LOLOL You know the answer to that one! She continued, "I know where I can find us some in the hospital!" And she was off. She appeared a short time later with mini candy bars of all kinds, and I did eat one right away. Chocolate can make anything feel better I figured!

I went home Friday morning about 10:30 and settled into the downstairs pullout bed. There wasn't any way I would be able to navigate the steps upstairs to a bedroom. My sister assumed the position of head nurse, water/food nazi, exercise director (JOANNE...you need to walk three times around the family room, after you take the 20 steps to the bathroom! Never mind that those 20 steps seemed to take me an hour to get to the toilet!), and most importantly...the chief drainer of "THE TUBES." (said in a deep and ominous voice) What the heck ARE these things?
They are sutured to my chest, two on each side and are approximately two feet of long rubbery tubing that end in plastic grenade type "thing." I have named them Lucy, Ethel, Ricky, and Fred! The "grenade" is where the "stuff" drains from the surgery and all four have to be emptied and measured twice a day then entered onto a chart, so inquiring minds (not me) will know their output. LOL Like ANYONE would want to know this! Anyway, my sister, Melissa,has done ALL of the above and MORE on a daily basis since I've come home. In my opinion, she is a SAINT (never mind that we are Jewish...she still qualifies for Sainthood) But nothing that Saint Melissa had done, could prepare her for what she would have to do this past Monday. (You'll understand in a minute why a Jew should be granted Sainthood)

I got up Monday, feeling good and drank some tea and had a piece of toast. I thought, "You know, I'm feeling pretty darn good, I should take a shower today!" Since I hadn't had one in four days, my family was appreciative.(the dogs didn't seem to mind) My sis helped me upstairs to the bathroom, turned on the water, and helped me into the shower. OHHHHHH did that shower feel good! I even turned the warm water up a little. (which will turn out to be a bad idea) My sis stayed in the bathroom while I let the warm water wash over me. I told her, "This feels GREAT! I should have done this a few days ago." I realized I couldn't stay in there forever, no matter how wonderful it felt, and I turned off the water. That's the last thing I remember Blog fans! Remember my little "episode" in the snow this past winter during chemo?? Yes, fans, I fainted dead away in the shower! I've done it again!

I have no recollection of ANY of this, so I'm just reporting what my sis told me. But, she went to hand me a towel, and she said that she could tell from the look on my face that I was "going down." Luckily she got her arm around my back and helped to lower me rather than have me go crashing down. (Hey, there was no snow this time to cushion the blow) OK, I know this is not a pretty thought, but picture my sis, standing over this wet, naked, bald, boobless wonder lying unconscious on the bottom of the tub and getting no response. I scare myself just looking at the bald and naked part! (Are you seeing now where automatic Sainthood needs to be granted to someone who has done what she has done?) Apparently, she kept tapping my face and calling my name, but I was in that faraway place and didn't really hear or feel anything. After several attempts I heard her and came around, but only for a few seconds, and I passed out again. This happened a total of three times before she was able to rouse me. I managed to get to my knees and out of the tub.


When I was finally out of the tub, she sat me down on the toilet. That didn't last long though, as I proceeded to pass out one more time! Somehow after that, she moved me to my daughter Rachel's bed, and phoned the doctor. They said, "UMMMMM NOT normal, get her to the E.R." NO KIDDING...fainting four times in less than 15 minutes isn't normal???? Thanks! That will be $500.00!

My sister phoned my husband, he came home from work, and they both got me downstairs, and into the car. Back to the hospital. I was checked thoroughly: EKG, Blood Sugar, Chest Xray, and Blood Pressure. Turns out my blood pressure was REALLY low 87/55 and they started pumping me with fluids. After several hours there, and seeing a multitude of doctors (some so young they looked like Doogie Howswer! One did confide to me it was his very first day in surgical rotation and he was a third year med student, so only a STUDENT doctor, not a REAL one) they decided it was safe for me to go home. All my tests came back normal and my blood pressure was back to where it should be after all the fluids they gave me. The only thing they could come up with was that since I was dehydrated and in a warm shower (OK a slightly WARMER shower than my sis started for me) it made me dizzy and down I went.

Moral of the story: Do not take a warm shower several days after surgery, keep hydrating yourself until you feel like you are floating, and most importantly DO NOT SHOWER ALONE! ;)

Where do I submit my application to the church for our newest Saint? Saint Melissa Day will now be celebrated every year on July 6! St. Patrick's Day will never hold a candle to this one! Everyone raise their water bottle to my sister!

xox
Joanne

Thursday, July 2, 2009

Today's the Day!!

Hi Everyone :-)

I know I've been a serious slacker once chemo finished! The last couple weeks have been a whirlwind. Rachel packed up and left to be a camp counselor in Mass. and I survived a cross country trip with Carly to Los Angeles! I'll have to write all about the trip when I have more time.

I returned to Michigan via Dallas with my sister, Melissa, in tow. She will be with me for the next week helping with post surgery "stuff." My surgery is this morning at 8:15 at the Alice Gustafson
section of St. Joe's Hospital and will last approximately 6 hours. YIKES!! Since I'll be in la la dream land, I'll be counting on all of you for positive thoughts and prayers. I know I will come through this and am looking forward to being cancer FREE!!

Well, my P.J.'s are packed, as well as my Ipod (I'll be spending the night at the hospital) and I'll see all of you on the other side of this.

I love you all, thanks for traveling on this journey with me.

xox
Joanne