Thursday, March 31, 2011
I've finally come up for air!
When I woke up this morning, I said to myself, "What? Nowhere to go today?" It seems like I've been "running around" for an entire week. Oh wait...I HAVE!! I think I will take a day and RELAX, if I can remember what that's like! Because later today Jessica is driving in from Chicago, and Rahel is driving up from Indianapolis! They both said that they would just like to come home and visit for the weekend. If L.A. and Dallas was a drivable distance I know that Carly and my sis would be here too! (love you both) So I will have company this weekend, and I'm looking forward to it!
I know you are wondering what Dr. K. has in store for me next. New drugs have been ordered, and I'm waiting for a phone call today to tell me which day to come in next week (probably Monday or Tuesday) to start the new chemo. I will one new drug infused at camp chemo, and the other drug is in pill form. So I get to take that one at home! Somebody called me yesterday to confirm that the pills will be sent directly to my house (very convenient) and I will begin to take them starting the same day as my infusion. The pills must be taken every day. The new chemo will also be infused every three weeks, just like the last one. Everyone alert their respective prayer chains...let's pray that this drug not only works, but CONTINUES to work! That's the goal. I guess hats are just in my future for quite some time.
I'm also planning on going to Indianapolis in a few weekends to visit Rachel for Butler's parent weekend, AND to walk in the Indianapolis "Race For the Cure." I can't thing of one thing more important than a CURE for cancer. The Detroit "Race for the Cure" is coming up May 21, and I'm planning on being there too. Please mark that date on your calendar NOW, and save the date. Please join me, and thousands of others, while we walk to show our support to wipe out breast cancer. It is a very emotional day, and I would be HONORED to have all of you (in the area of course) walk with me. We will talk more about this in another post.
One of the most special times in recent years that I can remember is when I walked with my sister, Jessica, Carly, and Rachel in the Chicago "Race for the Cure." All of my female family, along with a city full of supporters, walking in unison as one giant pink ribbon which stretched out for miles and miles. It's really a sight to see, and you truly feel like a part of something much bigger than yourself. Not to mention that I could draw strength in knowing that I am not alone in this nightmare of a disease.
My daughter Jessica also phoned me last night. She told me that she has signed up to do the "THREE DAY WALK" in Chicago this year. I was very emotional when I talked to her, and am thrilled that she is going to do this for me. (I know that they sleep in tents during the walk!) My sister in Dallas has also been a top contributor in raising funds for Komen the last few years, and I am equally proud of HER efforts. Think about what you can do. Because together, we CAN move mountains. Sooner or later there IS going to be a CURE!!! Of course in my case, I'm praying for the "sooner!" :)
Let's end this post on a happy note...because I don't know about you, but flowers and chocolates ALWAYS make ME happy, especially after the crappy week that I've had. I was pulling into our driveway with Steve on Tuesday night, and I noticed there were FLOWERS sitting by our front door. Of course I was VERY excited! Steve carried them inside (it was a VERY large arrangement) and he unwrapped them for me. Of course, the first thing you think about when you receive flowers is, "Who are they from?" I was thrilled to read the card, and to see that they were from Bobby, my daughter Jessica's boyfriend! (that has such a nice ring to it...Jessica's boyfriend!) It is without doubt the most lovely bouquet that I have ever received. Number one,
the flowers were BEAUTIFUL! Number two, there was a DOG made out of flowers!! (and we all know how much I LOVE DOGS) Number three, there was a HUGE box of chocolates that came with the flowers!! (and I'm talking a big honkin box here) Now does this guy know the way to my heart or what?! I called him immediately (didn't even take off my coat) to thank him for such an amazing gift...but I will tell him again right here...Bobby, I just LOVE my flowers and chocolate, and I love you too! It was so sweet of you to send that to me, and it definitely put a smile on my face for the first time that week. I shared a few of the chocolates with Steve, and BOY ARE THEY GOOD! yummmmmmmmmmm I wish the flowers would last forever. Wait, they will, because I took a TON of pics! So here are a few, so the rest of you can enjoy them as well.
Don't look too closely...there were already pieces missing when I took this pic! :)
Love to all of you
xox
Joanne
Tuesday, March 29, 2011
U of M
This is what I posted to facebook but wanted to give you a little more detail below
3:40 A.M. up and wide awake, so I wanted to tell all of you that the visit to U of M yesterday did not go as I had hoped and prayed. After an ultrasound which was compared to the one that I had in December, it seems that despite the chemo showing the cancer shrinking in the first three rounds, the next three rounds showed that it reversed and has begun to grow again :( This means that right now, surgery is not even in the picture. We are back to square one and need to change the chemo to find the right one that will send this %&@$ disease back down to a reasonable place and keep it from growing anymore!! I may have lost this round, but I am going to continue to fight the battle. I have had multiple calls recently and I am so sorry that if you are one of them and I have not returned your call. It has been a VERY tough week. I have no choice now but to fight like hell and that my friends is what I plan to do. Nobody said that life was easy...but I guess I didn't know how tough it could get. I love all of you and am thankful for your support as I continue down this uncertain road.
Stealing a line from one of my favorite children's book...It was a terrible, horrible, no good, very bad day yesterday. Well, I should say that about the last 48 hours, because the lead up to the doctor visit wasn't exactly a picnic either. Nerves and the unknown just got to me on Sunday, and I had pretty much worked myself up to a place that I don't usually go to. So it was with a heavy heart, that Steve and I headed to U of M yesterday. The long and short of my day was that they performed an ultrasound to compare to the one that I had in December. It showed that the cancer had decreased in a few areas, but it sadly showed that there was new growth in another area, despite the initial success of the chemo that I have been taking. Because of the new growth, surgery is not in the picture for me currently. To say that I was saddened to hear this news would be an understatement. I just wanted to hear that it could be taken OUT! So, I will be switching to a different chemo that hopefully, miraculously, (feel free to insert your own word here) will WORK and make "it" stop growing, get smaller, and keep it under control. Then I can be re-evaluated at that time...but first I have to get there. On to the next battle. I am NOT giving up, that is not an option (did you hear me girls?!!) Yes, there were a LOT of tears yesterday, and talking with my daughters, sisters (that means you Mary), and mother was...well...you know how that went...no need to say anymore. And Steve, having to deal not only with me, but the news as well, was very hard on him as well. He tried to be strong for both of us, but in the end I was the one handing him the tissues on the drive home. But as I told each of them...I'll finish my personal pity party tonight, and tomorrow is a new day. Steve kept reminding me that there is also always hope. So that's what I'm holding onto dear friends...A new day and new hope.
The next round has begun. Bring it on.
xoxo to ALLLLLL OF YOU!!! You mean so much to me that I can't even put it into words.
Joanne
Friday, March 25, 2011
Two steps forward One step back
Apparently, chemo cannot be absorbed through scar tissue. I'm still a little fuzzy on all of this. I did ask him if my implant was removed, would that help? He told me that was a question to ask my surgeon at the U of M when I see her on Monday. He also told me that he would like to change my chemo drugs, which means continuing on chemotherapy :( No, I don't know now for how many more treatments either. I will see the surgeon on Monday, and see what her "plans" are for me. Then I will return to Dr. K. (oncologist) on Tuesday morning to discuss the surgeon's plan...which might be different.
I had no idea when this second diagnosis was given in October, how difficult it would be to travel down this road again. It has been tough, I won't lie to you. Some days it seems like my life will never be normal again. I try so hard to fight, and the thought of all of you is sometimes the thing that keeps me going. Recently I have been seeing the ads on TV for the 3 Day Breast Cancer walk, as well as hearing them on the radio. In the past (pre B.C.) I would see them and think, oh, that's really sad, and then honestly, not think too much more about it. Now it difficult to watch without tearing up. The part that means the most however, is when different individuals say, "So nobody's mother, wife, sister, or friend EVER has to go through this." Not a day goes by that I don't wish that somebody comes up with a cure because now I am one those mothers, wives, sisters, and friends that is going through it.
I will be back on Monday with the surgeon's recommendations. Hug the people that mean the most to you, let them know that you love them, don't sweat the small stuff, and don't take anything for granted.
Lots of Love,
Joanne
P.S. CeRae...you are a ray of sunshine in my life! My dear "cookie" friend, you put a smile on my face everytime you leave me a message...thanks for still being there!! xox
Monday, March 21, 2011
All quiet at home
It is once again quiet on the home front. Carly left to go back to California on Saturday evening, and Rachel drove back to Indianapolis yesterday afternoon. (How about those Butler Bulldogs in game 2 against Pitt in NCAA basketball!!!! GO BULLDOGS!!) It was WONDERFUL to have them home for the week! We lounged around mostly, (always nice) ate well, and even took Rachel to Greektown Casino! (We LOVED the Wizard of Oz slot machine... she even won 30 bucks! Not bad for a newbie to the casino who just turned 21!) All in all, everyone left well rested and ready for the next two months. Rachel will finish her junior year the first week in May, and Carly will end Taping on her first season at the Ellen Show on May 26. My oldest, Jessica, is now busily job hunting, since Oprah will also be wrapping up (for GOOD) sometime in May as well.
On the B.C. front...I am scheduled for my PET scan this Wednesday morning at 8:45. I am SO thankful to have the test at that hour. You have to "fast" for 6 hours before the test (water only) and the test is administered in two parts. When you arrive they inject you with radioactive isotopes (yeah...doesn't sound very healthy to me either...Now I glow from the outside due to radiation therapy, AND the inside from all of the isotopes they have injected me with for multiple PET scans over the years) and then you have to wait for over an hour for the isotopes to circulate through your body. Then they call you back in to lie in the claustrophobic tunnel for about half an hour. Last time I had this scan it was at 4:30 in the afternoon. So that meant NO food or drink ALL day! By the time I was finished with the scan it was close to 8:00 p.m. and I was so hungry that I when I went home, I ate anything that wasn't nailed down. Hopefully this time will be better. I should be finished by noon.
It takes 24 hours for the scan to be "read" and that will bring us to Friday. UGH Doctors are not around on Friday afternoons I have found...so I probably will have to sweat it out all weekend for the results on Monday or Tuesday. I want them to take their time with this scan, as it will determine what is happening to me next. I really have NO idea what my next course of action will be...it's up to the scan. (just a "little" nerve racking) I will also be taking this scan to my surgeon at the University of Michigan to see what she wants to do as well. Sure is a LOT hanging on this scan. Which is why I was very happy to have Rachel and Carly home for the week, to take my mind off of what will be happening. I didn't really give it much thought for seven whole days. But, it's back to reality now, so let's all just keep praying that everything looks good on the scan, and the "options" will be good ones.
I will let you know as soon as I know anything...let the waiting game begin.
xox
Joanne
Tuesday, March 15, 2011
What a week!!!
I began my infusions and after the first bag, I reallllly didn't feel good. I was just about to say something to my nurse, when she approached me first. She said, "Joanne, are you feeling alright?" (Later she told me that she looked over to check on me and noticed I did not look "good" (understatement) and I was not my usual perky self. Thank goodness these people know me, and could tell right away when something was not right!) I replied, "Actually, no, I am not." I told her I was light headed and extremely cold." She thought it best, (me too) to see the physician asst. Suzanne, and off I went, I.V. and all. My blood was rechecked and all seemed well, but she thought I could use some extra "fluid" and went back to my recliner to get the rest of my chemo, as well as intravenous fluids to hydrate me. I also told her about the P.T. that I had received the day before, and how it was quite a work out for me. She seemed to think that my muscles took quite a work out, and my body was telling me that it was too much. She gave me a RX for a muscle relaxer to give them a rest, and told me to stay in bed for the next 24 hours and just sleep. I went back to my recliner to receive the extra drip, which took an additional two hours. I slept through most of it, and when it was finished, I drove myself home...very slowly and went to bed. Bed is where I spent the better part of the next couple of days. I slept A LOT!
I'm not sure how that muscle relaxer works, but I was "out for the count" for an entire day after taking it. Over the next few days, I did start to feel better, but I canceled my P.T. for Friday morning thinking that it was not a good idea to do this all over again! By this past weekend, I began to feel better, but decided to really take it easy. I did not even take the dog pack out for a walk for five days! (They were getting cabin fever!) By Sunday, I felt good enough to venture outside for a walk, and it sure did make me feel better.
Today is Tuesday, a week from chemo and I do have my post chemo check up this afternoon with Suzanne. She will also make the appointment for my next PET scan (probably next week sometime) and hopefully a decision of some kind will be made for my next round of treatment...whatever that might be! I will let you all know as soon as I find out something.
Lucky for me, two of my three daughters are home for the week. Rachel has spring break from school, and Carly has "spring break" from the Ellen show! :) Jessica did have a week long break from Oprah two weeks ago, but LUCKY FOR HER...she spent her week off in PARADISE...Hawaii that is...with her boyfriend, Bobby!! I lived vicariously through her that week, and had wonderful pics of pineapple plantations, sea turtles, exquisite beaches, etc. and loved every minute of her trip!
I hope to have a MUCH better time THIS week than I did last week! Thanks for checking in with me, and sorry to keep you all in the dark and not posting something here sooner.
Have a terrific Tuesday!
xoxo,
Joanne
Wednesday, March 2, 2011
Is it March already?
The arm has had its own ups and downs. Some days it is GREAT, and I think, "Hooray! This is it! The beginning of it getting better!" But the next day, I come crashing down, along with the swelling, and wind up taking five showers that day to relieve some of the discomfort or pain. There is just no telling when or where the swelling will arrive, or go away. I may have to design a line of clothing with one arm bigger than the other so thatI can wear real clothes again. I'm really sick of wearing the same three over- sized baggy t shirts to fit over the mummy arm.
One of the best things to happen to me in the last couple of weeks is YOGA! My dear friend Jan persistently kept asking me to attend a yoga class with her. I really did want to go, but "life" just kept getting in the way. Finally, her persistence paid off, and we were both free last Thursday to attend a class together. To say it was amazing, would be an understatement. I can't tell you when I've enjoyed something more. By the time I left class I felt calm, peaceful, and totally stress free. (stress is usually my middle name) I felt so good after that class that I immediately thought that I'd like to come back. So I am...tomorrow! It is a basic yoga class, and the title of the class is "Yoga for Emotional Healing." I can take all of the emotional healing that is pointed in my direction, and I'll let you know how it goes. Thanks so much to Jan, for not only being my friend for so many years, but for not taking no for an answer, and for offering me something that will be life altering.
While I'm on the subject of thank yous, I have a few more to dish out. First of all, I need to thank someone I've never met! Her name is Layla, and she works at the Ellen Show out in sunny Los Angeles, with my daughter Carly. She is the manager of the "Ellen" gift shop. She gave Carly a beautiful scarf to give to me, and I was thrilled when I received it. Layla, how VERY thoughtful of you to think of me. I am deeply touched with your kindness and I will wear it proudly. The scarf is SUPER soft and very long...which is important when one has no hair and is trying to keep many body parts warm in a freezing Michigan winter. I will think of you when ever I wear it. Here I am in all of my glory! (Yule Brenner has nothing on me! Once again, if you don't know who he is...look him up and you'll understand the reference)
On to the next thank you. Yesterday another package arrived, this time from Texas! It was from Sheila, a friend of mine and my sister. (OK, my sister knew her first, but I can still call her friend too) This box contained a beautiful homemade polar fleece scarf, in two shades of pink! I just love it! Thank you SO very much Sheila. For not only thinking of me, but taking the time to make such a wonderful gift for me. It is warm and cuddly, and feels fabulous around my neck. It is just the thing to keep wrapped around my neck on these miserable March Michigan days, and it is going to be perfect to wear when I walk the dog pack. (which is mostly every day) I had a huge smile on my face when I tried it on, and if it weren't for the "hot flashes" I would be very happy to wear it around the house to keep toasty! I'm sending you a big Texas sized hug right now through the computer...and you know how big that is because everything is bigger in Texas! Take a look for yourself. Is this FUN OR WHAT!! It just makes you smile to look at it. Thanks Sheila! xoxo
Coming up on the horizon for me....Yoga tomorrow (yeah!), P.T. on Friday and Monday, followed by chemo #6 on Tuesday! Then I'll get "scanned" (again) shortly after that. Based on the scan results, I will let you know the next course of action. Let's pray for GREAT results!
Enjoy the upcoming weekend. I'm just hoping that it doesn't snow!
xox
Joanne