One Day At A Time

Still in a daze and a fog over my dad's death. It was so unexpected and I just can't believe I can't talk to him on the phone any time I want.

Here are the memorial pictures which dad/Tom's friend Larry put together. He has helped our family so much and these pictures show my dad over the years. Very cool.
http://www.z-pictures.com/rhodesmemorial/

Dad always wanted to be buried at Arlingtion National Cemetary so that's where the funeral will be. It will be held on November 30th so the whole family is going up. I'm hopeful that this will bring us closer together in ways we can't even imagine yet. I just can't wait to throw my arms around everyone and be together.

Still on the clinical trial and this 2nd cycle proves to be less days in Tampa, so that is good. The date of the funeral landed during a time when I don't need to be at Moffitt, so everything worked out there. I will be back on Nov. 24th but then it's taking pills from home after that.

The stress from not sleeping, along with some general vomitting from the meds, made me pull a muscle in my back along the edge of my rib cage. Last Friday, I had excrutiating shooting pains there and Kristen had to drive me to the doctor. Kristen was an amazing friend and talked me through the pain like a trained professional. It felt as if someone was driving an icepick into my back and turning it over and over, relentlessly. They gave me a pain shot in my bum... the same shot they give people passing kidney stones. Ouch! They took an xray and saw no other problems, so pulled muscle it is! Let's stay away from anything that might be the cancer going crazy, right? Every pain and stress is scary, let me tell ya. I'm taking a muscle relaxer and a pain reliever for a week and I was ordered not to do any housework for 2 weeks. Ha-broke that the first day. I'm not proud.

When this happened, I had to call the clinical trial folks to let them know and ask what I should do. I ended up going to my primary care doctor when I couldn't get anyone on the phone right away. I was in so much pain! So, I talked with the manager of the clinical trial unit and now I have all the numbers I need in case something comes up again. Wow, it's a marvelous thing to actually be given phone numbers you might have to use while undergoing cancer treatment.

I also found out that my CT scan will be at the end of December for sure. Something about my insurance not paying for one sooner, which is fine by me. I hate that fuckin' test. I get the metallic taste, the full body hot flash and the peed in your pants feeling all at once. Those are 3 things that could possibly happen and I get all three. Lucky me.

Praying and hoping that the CT will reveal that this clinical trial drug is magical and the cancer is gone. I cannot describe to you how awesome it is to not be on chemo. Wow. Please please please God help the medicine kick those fuckers out of my body for good. I'm pretty sure I have a charming and persuasive angel up there on my side pulling some strings. Thanks dad. I love you.

My Dad is gone

Dad passed away yesterday. I got the call after posting the last update. No words. Only sadness and a heavy heart.

My dad-fight fight fight!

Ok, I know I've been quiet on the blog. Quite frankly, I wasn't sure what to say. My father has been on life support machines in California since last Monday. There, I said it.

He was having a hard time breathing over that weekend and went to the Long Beach VA hospital Monday morning. He has one of the worst cases of pneumonia they've ever seen. And I'm pretty sure those docs have seen some shit.

They had to give him sedation so he wouldn't fight the tubes and he's been unconscious ever since.

So, we've been praying and hoping that he would come out of this and I gotta tell ya, that man is a strong son of a gun.

Tuesday night his heart stopped for about 2 minutes. They had to pound his chest or do things very movie like to get it going again. But it did.

Wednesday night was the hardest. The doctors only gave him a 25% chance of making it. Then the doctors called his wife, Julie, later in the night and told her to come back to the hospital. He would not make it through the night.

But he did it make it through the night. And the next night. And the next night. Here we are one week and a day after he was admitted and he is hanging in there. Damn. Awesome.

His lungs have failed. His kidneys have failed. He has had 4 days straight of dialysis. Perhaps today will be the 5th? I don't know much about dialysis, but I hear it has something to do with getting the toxins out of your system. Well, dad's led quite a hard life and had a lot of fun so keep doing that dialysis people! There are lots more toxins to go, I'm sure.

Blood pressure has been absolutely normal for a few days-a miracle after they had to restart his heart. There are miracles around us every day.

My dad was doing rehab from a pretty bad car accident six months ago, so I'm sure his defenses and abilities are down. We were comparing notes about both of us fighting our way to health.

Fight fight fight, daddy! You can do it! What a bad ass story when you are on the other side of this!

My oldest brother, Dave, is there this week, so that is great. Julie needs sleep and rest, obviously upset, but whenever I call her she says, "Don't worry, Laura, I'm taking care of your dad." and I know that she is in ways better than any of us could. We are all praying and hoping that there is a happy ending to this story.

For me, I've been dreading every single phone call. Every time my phone rings, I get an enormous knot in my stomach. But this is not about me. He makes a little bit of progress every day.

Keep praying an hoping everyone. Pray for us both please, as we pray for you. It is definitely working!

New York Trip

Jake and I were so lucky to be able to stay with my wonderful friend, Jennie, in New York when we were there to support Richard in his ride

in the Tour de Pink.

Jennie is so beautiful and kind and smart and funny and spending time with her was most excellent. Jake loves her as well. She is really good peeps.

Our friend Minby also came down from Syracuse which was a fabulous treat. Both John and Jennie are great friends and we are lucky to have them in our lives.

Richard had an awesome time on the bike ride. He said it's one of the best things he has ever done. We had the honor to meet some of the other riders and survivors and I just have to say that people are good. They just are. People are good. Lots of warrior women inspiring me in the fight, along with their fabulous husbands. Thank you amazing people!

My husband consistently blows me away with his support and love and this ride on my behalf was no exception. I am so humbled by all the people in my life.

Jake and I had an amazing time. It was our first trip with just the two of us, even if that part was only 3 days. He is so funny and thoughtful and it was my extreme pleasure to see him discover the magic of New York City and Broadway for the first time.

Every day I get to stay on this Earth with these wonderful men is a good day. I love them so.

Thanks to all that helped make the Tour de Pink possible. One more step closer to the cure!

Peel the layers

Let's get serious. I promise it won't last long. :-)

I've been so blessed the last couple years to have so many people cheering for me, praying for me, sending me good thoughts and all around positivity. Please don't stop. You know who you are and you probably don't have any idea how much courage I get from you.

Some of you have accused me of being an inspiration, courageous, super woman, etc. I receive these compliments whole heartedly and put them into my toolbox to fight cancer, but I have to be honest with you. Super woman I am not.

I do believe that this cancer trip happened to me not only for a reason, but many reasons. If I can encourage anyone to keep their chin up or laugh at adversity than I definitely think it pushes me forward in the fight. I get my strength from you.

This transition from MD Anderson to Moffitt has not been an easy one. MD Anderson saved my life. Simple as that. They saved me from an unnecessary mastectomy and a waiting period that would have delayed chemo and then where would I have been? Not here, I assure you.

The staff, nurses and doctors at MDA have always treated me like I'm a person and gone out of their way to take care of me. It hasn't been perfect, but when it's not, there is always someone trying to make it better.

The last month of waiting to see if Moffitt even wanted me or if I would be accepted into the clinical trial has been one of the most frightening since this all began. It brought a rush of fear back reminiscent of the first days of diagnosis. These are feelings that no one should have to experience ever, and definitely not multiple times.

When you are categorized at Stage 4, most everything you do is about time. How much time do I have left? How long before the side effects kick in? How much longer can I take this medicine before I have to switch again? Thoughts go to when we were growing up... anyone that was Stage 4 was a goner. I admit to you, dear friends of cancercopia, that at times it has been hard to embrace the idea that I am not a goner.

The facility of MD Anderson helped me see that I am far from that. There is hope and lots of it. Look at all of the miracles I have already experienced. The cancer has gone down in ways they couldn't have imagined in the beginning. I am still here and there are lots of choices of medicines and treatments to try along the way. And for that, I would like to say thank you to everyone associated with MDA. Thank you for saving my life. Multiple times. From the chemo to the brain radiation to the energy medicine to the pharmacy, every one of you is responsible for my still being here.

So, you see, it is just a bit challenging to transfer the trust of my care, and ultimately, my life to the Moffitt Cancer Center. But as we conclude our first week together, the fear is subsiding. The waiting is over and now there is action. The nurses have made it more than obvious that they care about who I am, my family, my future. I can feel the air entering my lungs again. I will release each white knuckle holding desperately to the MDA baton and let the blood flow back into the flesh. I'm reaching over to Moffitt slowly and holding on for dear life. My new Moffitt friends, we had a bumpy start but I'm learning how to trust your wonderful caregivers.

Thank you nurses and doctors for grabbing the baton of saving my life.

Thank you supporters for coming with me on this trip. Most of the time, I'm in fight mode, and I know that we will win. That God is good and wants good for me. Thank you for letting me be scared and crazy and silly along the way. Thank you all for letting me be myself.

Nurses save the day! as usual!

It's back to Moffitt today for some labwork follow-up.

Jackie was the nurse assigned to me yesterday. She was a pure delight. And funny! She had us cracking up the whole day. And after I had to fast until 12:45, she brought me the most delicious chocolate covered macademia nut treat to break the fast (as the jews say :-)

Christina was there too, which was nice to have a friendly face we already knew. Some shameful person threw away her tonge depressor person I made for her though. I'll have to pilfer some medical supplies soon to make up for it.

Maria breezed in to help and was very smiley. That's all the contact we had on the 1st day, but more will follow I'm sure.

Brenda was the third nurse that worked with us. She came in and told us if we needed to go take care of Jake, that we could go early and they'll just document it. She said it won't affect the trial or get me booted out. She agreed that we should have been told it's a 14 hour day, not a 10 hour day. She also went through my whole schedule with me to explain what would happen on each day. That way we'll know when to get Jake picked up after school and when we'll be home early. It was a great relief to get that information and she is just as nice and awesome as everyone else.

Heather also explained things really well and we are finding out if I really need to get Zometa every 3 weeks for the rest of my life or not. I'm going to talk to Dr. Minton about stretching it out because a few ladies I know that have been on it for a few years (I've been getting it by IV every 3 weeks for 2 1/2 years) have been experiencing jaw problems. Their bones start coming out of their gums-it's really gross. And once it happens, you can't fix it. So we're looking into maybe giving it to me a little less since I'm so young and healthy. Well, except for my own cells are trying to kill me.

Dr. Hahn stopped by to say hello. (I'll check the spelling on that later) Apparently she works with Dr. Minton and has shared patients with Dr. Shah in the past. She came by just to introduce herself to me. We asked her a few questions and she was awesome too.

So, thank you nurses for turning my Moffitt experience around. I look forward to kicking cancer's ass with you!

Feels Like the 1st Day

Well, I'm having a much better experience today at Moffitt than last week. The nurses are the absolute best. They are friendly and efficient and laugh at my crazy ass, so what more can you ask for?

We learned that Kathy was a nurse on the floor who started as a coordinator about 3 months ago. That explains her tentativeness and reluctance to admit the echo team is a bunch of douchebags that don't care about patients. I guess I'll let her off the hook--well, right after this....

Kathy and Karen both told me it would be a 10 hour day and be prepared to be here for the long haul. Then that adds about 4 hours drive time from Orlando as well. What they weren't clear about, was that it is 10 hours from the dosing of the medicine. After labs are drawn and run in the lab and after a 90 miunute infusion of Herceptin. So, I didn't receive my medicine dose until 10:45 AM which means my last blood draw of the night will be at 8:45PM. Which means I cannot leave this hospital until then. Which puts us back in Orlando after 11PM.

Now, we could have planned for accommodating for Jake better had we known this information, but oh well. I am hopeful that they will use some of this experience when communicating with patients in the future. Please oh please, tell people it's 10 hours from the dose, not 10 hours from when they arrive at 7 AM.

Also, it is unclear how many of these crazy long days are ahead as the schedule seems to be revealed as you go. This doesn't help with communicating to my employer or with child care, but I'm trying to learn to go with the flow.

Christy and Richard are here and we all got up at a horrid time. I am grateful for both of them for being here with me. Also, Julie's brother, David Sindler, dropped by as he is a medical student here at USF.

It does feel good to be getting medicine again. Let's kill some cancer, bitches! Really.