Message from Meghan, Suesan's daughter

Suesan Gail LaVoie-Gardner
2/8/57-2/16/10


On Tuesday, February 16th at 2:00AM, my mom lost her battle with cancer.

In late January she found that the cancer had spread to her liver. Dr. L put her on a new chemotherapy program. She had her first treatment on 2/4. She spent the next week recovering.

Her next chemotherapy session was scheduled for 2/11. Blood tests indicated that her liver was not functioning properly and she was admitted to Shadyside Hospital. Tests showed a blockage that was causing severe jaundice. She was supposed to get a stint to remove the blockage in her liver but it was soon discovered that her kidneys had ceased to function. An MRI revealed that the cancer had taken over half of her liver.

On Monday (2/15) we were told that with treatment, her condition would likely not improve. They said that she had a few days to a week left. We did what we could to make her comfortable. That night, she passed away in her sleep. None of us, including her, expected it to happen so quickly. As you know, this year and a half wasn't the best. We are making our way through this by remembering who she really was and not letting her death define her. You can view an album of pictures from her life, here. (link updated on 2/18/10, it should work now.)

There will be a memorial mass on Saturday, February 20th, 2010 at 12:30PM at St. James Catholic Church in Sewickley, PA. In lieu of flowers, please make donations to St. James Catholic Elementary School in her name.

There will also be a memorial service in Chicago, IL on Saturday February 27th, 2010 at 10:00AM at St. Alphonsus Church in Prospect Heights.

I will be logging into mom's facebook page to keep all of you up to date.

Thanks,
Meghan
snatchkom@gmail.com

Lots of stuff has happened

On January 4th, I called the cancer center and spoke with Dr. Puhalla's aide. She told me that the spot hadn't materialized like they thought it would. At this point I'm still waiting.

On Friday, January 8th, NationalLink awarded their second Peer-to-Peer award. This is where a co-worker nominates someone else for special recognition. I won the award On Friday for the month of December.

I had been having a persistent nagging cough the past few weeks and thought it was a sinus infection. On Saturday, while at work, I stood up and it felt like I had been punched in the kidney. When I sat down, I felt fine. Saturday night, I had a fever. On Monday, I called the cancer center and they told me to go in to the ER. I thought I had a sinus infection and kidney infection. I was stressed that it would keep me out of the trial.

Turns out I have pneumonia and a blood clot in my lung. I was admitted into the hospital on Monday, the 11th, and should go home tomorrow, the 14th. My breathing is much better. I have to give myself two shots a day for the next 2 months or so with an anti-coagulant.

I also had them look at my shoulder thst was giving me pain off and on. They gave me a prescription pain-killer and suggested massage. Apparently I have a big knot.

The last thing was that I was given a different anti-depressant. It seems to help, at least more than Zoloft.

The thing I was worried about the most was whether or not this would stop me from getting into the trial. The Physician assistant for the admitting doctor checked for me and it won't. Whew!

So, I'm sitting here in my private room (thank god), deciding what to order for dinner and thinking about taking a walk around the corner to see if I see any babies in the nursery on this floor.

I'm feeling pretty good. Good night peoples.

Still waiting...

I hope everyone had a wonderful holiday. I know that we did here. Meghan and Cliff came over on Christmas Eve for dinner and some present-opening. Then Meghan came back on Christmas morning while Cliff went to his mother's house and we opened the rest of our presents. John made a delicious waffle breakfast.

Next year, we'll have to do the Christmas eve dinner at both homes (ours and in-laws) because Christmas day will be at Meghan and Cliff's house. One doesn't want to bring home all those baby toys, etc after opening them. Yes, I did say baby. Meghan is expecting in July. I think I'm more excited than she is. As soon as it was official, I had to buy her her first baby clothes. They don't know the gender yet but that will come in February. They're looking for a bigger place on the other side of the river to make it easier for both to get to work.

Bill has been home the past few days and it's been nice having him here. He had PRK surgery in October and it's still strange seeing him without glasses. His last pair were black rims and he reminded me of Elvis Costello. He's been doing well in State College and has been getting more requests to do camera work.

I haven't started the trial yet. I'm a little disappointed but then again not too. I was supposed to have tests two weeks ago and then start treatment the week of Christmas. I still had so much Christmas stuff to get done that I was somewhat relieved to have the time. I need to call the doctor's office this coming week and find out what's going on. The only thing I can think of is that for insurance purposes they want to wait until the first of the year.

We're all getting ready to go out to lunch today at Max's Allegheny Tavern (German) on the north side of Pittsburgh. Then we're going to the Carnegie Science Museum to see the train exhibit they put up every year. It's pretty phenomenal. I'll try to take pictures.

I wanted to take the time here to tell someone very special to me how much she has meant to me this past year. Maria, the president of NationalLink, has been one of my biggest supporters. It has been a great comfort knowing she was there to listen whenever I needed to talk. She would also take work off of me when the pressure became too great and understood that I needed to work to keep my mind off of things that were happening. She and Lori worked around my schedule and insisted at times that I take time off so that I wouldn't get too tired. My entire team and myself along with everyone else at NationalLink miss you greatly. I wish you good luck in whatever you do.

Well...time to get this show on the road. Merry Christmas everyone!

Good news at last!

I received a call from Dr. Puhalla's office two weeks ago. I was told that they had a spot for me in the clinical trial. Woo hoo~! I had an appointment on Tuesday, December 8th at 4:30 p.m. to meet at Magee Hospital to fill out the consent form for the clinical trial. This is both exciting and scary. I'm excited to get started but also worried on whether or not I will tolerate this treatment as well as I did the last (at least I feel I tolerated it well).

I was put in the exam room at 4:20 p.m. I had just a gown on and those rooms are always cold. I put my winter coat on over it and sat in a chair versus on the table. I fell asleep and woke up about 10 after 5. It was awfully quiet in the offices and I started to wonder if they had forgotten about me. Finally, at 5:45 p.m. or so, the doctor came in. She had to read all the paperwork to me and go over the possible side effects. My favorites were the ones reported in animals but not in humans.
1. Excess production of salvia. Do they make cute bibs for adults?
2. Abnormal gait. The president of NationalLink said that if she saw me walking around the office like John Wayne, she wouldn't worry.
3. Mild sleepiness followed by mild excitation. *Snore* Hey! Are you people working?!?!? *Snore*

After signing the consent form, I left and went over to the Rivers Casino. I had arranged to meet Meghan (MFD) and her husband, Cliff, there. She and I were there first and she ended up winning $61 with a $20. We won't talk about what I didn't win. We had dinner at the buffet and it was much better than the first time when John and I went. I think they're getting the kinks out. I found that it's still too smokey for me there and ended up having an asthma attack walking out to the car. Combination of the smoke and the cold air, I think.

Dr. Puhalla told me that I would have tests scheduled next week and start treatment the week of Christmas. That's not new to me. My first chemo treatment started on December 22, 2008. I'm just waiting for the call for the tests. My creatonine was great; only .90.

I am definitely not looking forward to the queasiness and need to find out if they'll give me the same great drugs they gave me the last time. I'm also not looking forward to the muscle aches and pains and the hair loss. It was coming in nicely and I almost paid Philip Pelusi hair salon $30 to trim it up. Glad I didn't since it will start to fall out again. Maybe it won't...the side effects say "possible" hair loss. We'll see. It's too cold to be bald. Guess I'll have to wear my pink breast cancer awareness Steelers cap (man are they bad this year).

I'm sorry it's been so long since I've last posted. I've just been too tired to go online when I get home. Of course, the office, where the main computer is located, is freezing. I wear a robe and gloves when I'm in there.

Take care everyone and hope you're having a wonderful holiday. As soon as I hear more, I'll post.

-Suesan

Update..

I received a call from Dr. Puhalla on Monday, November 16th. She said she had been keeping an eye out for my bloodwork to check my creatonine and hadn't seen it come in. I told her that I was waiting for a spot so that I had longer to get the numbers down. She said she'd rather I did it now so that if they needed to work on it, they had time. I went in on Wednesday, the 18th for the bloodwork. It took two tries to get it out of me. The arm didn't work so they went for the back of the hand.

Dr. Puhalla's assistant called me on Friday, the 20th and left a voice mail stating that the numbers looked good. Yipee! When I had spoken to Dr. P on Monday, she said that she expected a spot for me in the next 4 weeks. I'm hoping...

On Wednesday, the 25th, I received a call at work from my cousin, Karen. Turns out she and her husband, Ron, were in the area (they live in Grand Rapids, MI) and wanted to stop by and see me. They had been using their GPS to get from Michigan to West Virginia and ended up by us. Considering they were on their way to Morgantown, WV to see Ron's niece, it didn't put them too far out of the way but it was fun razzing him about it. He's a retired Lieutenant Colonel in the army. How could you miss WV and end up in PA? :)

I'm still feeling okay. A small problem with allergies which is making my asthma kick up a tad, but other than that, feeling good. I'm working too much (end of the month crunch) and need to cut back on that. 12-hour days don't do anyone any good.

Oh yeah! John got the Christmas lights up outside yesterday. I'll have to take a picture tonight and upload. My favorite time of year, however, I had hoped last year by this time this year, my travails would be a distant memory. Oh well...

I also received my Steeler's Breast Cancer awareness cap in the mail. I had ordered in October and finally got it last week.

John presented me with my repaired engagement ring all shiny and new (new setting) on Wednesday. Now I need to get the wedding band cleaned so it looks as nice as the engagement ring.

It's late Sunday afternoon and I think I'm going to head out to Barnes & Noble. I have a coupon for 40% off one item and I'm thinking tea. I really like their peppermint tea. I need more for home. I may also pick up another heater that I saw on sale for up here in the office.

Steelers on at 8! Too bad I won't be awake to watch the entire game.

Still waiting....

Still waiting for a call to say I have a spot. I've sent 2 emails to let them know I'm still interested. Still feeling fine. Let's get a move on!

Carboplatin/taxel ABT-888 clinical trial

I saw Dr. Puhalla today. She seemed very upbeat about this new therapy working for me. She said there was a narrow window of eligibility for this particular trial and I fit into it.

1. I couldn't have had taxel previously (I haven't)
2. I couldn't have had more than two kinds of therapy for the cancer in my lungs (I haven't).
3. My kidney function has to be perfect (okay...we're working on that).

There aren't any open spots right now in the trial but they expect one to open up in the next 3-6 weeks. She said it wasn't a problem to wait that long but if it were to go past 6 weeks, I might want to consider starting a chemo treatment while waiting. One that wouldn't infringe on the trial.

This is how the PARP Inhibitor (ABT-888) was explained to me. You have DNA in your cells. Each cell has many mechanisms to repair itself if it gets "hurt". Cancer cells have fewer mechanisms but multiply faster. Some stop working because of the chemo but the cancer cell has another one (PARP) to fall back on to repair itself and keep on growing. This is especially true if you have the BRCT gene (hope I got that right), which i don't or if you're triple-negative, which I am.

The pill, the PARP inhibitor, stops that fall-back mechanism from working. It works in tandem with the chemo to shut down the cancer cell's ability to repair itself and it dies. Sounds like a plan to me!

I googled carboplatin ABT-888 and actually found out what the trial consists of in the UPMC system. I would start course 1 (chemo #1) by taking the carboplatin chemo for 30 minutes and then the taxel chemo for 3 hours. It will be an all-day affair because they will take my blood every hour to check certain levels. Good thing I have a port so they don't have to stick me each time. Three weeks later, I will start course 2. I will take the PARP pill twice a day for 7 days. On the third day, I will have my chemo treatment 30 min/3 hours and will be there all day while they test my blood to see how I handle the addition of the PARP pill. These first two treatments will be done at the Hillman Cancer Center in Oakland (part of Pittsburgh). Once they determine that I can continue with the treatments, I can transfer back to Magee-Women's Hospital. I will get Dawn, my previous chemo nurse. The treatments won't be all day, just however long it takes to administer the chemo. I think that I would undergo 6 treatments in all.

Dr. Puhalla said that there were very few clinics in the country administering this trial and they had people coming in to Pittsburgh from all over to participate in it. Next time I complain about having to go to dahntahn Pittsburgh, I'll remember that.

In regards to my kidney function, I have to work on hydrating myself. I don't drink that much during the day. I've always been yelled at about that. I have a glass of water with breakfast, one with lunch and one with dinner and that's usually it. I don't drink much pop and sometimes, instead of water at meals, I drink plain unsweetened iced tea. I need to push the fluids big time to get my creatonine (sp) down to 1.0 or lower. When I was in the office on the 12th, it was 1.2. When I saw the renal doctor for the last time on September 8th, it was .90. Dr. Puhall said that it could be because I wasn't drinking enough. I know I don't. I took Bill's Brita pitcher that he had at school and bought new filters for it tonight. It will be sitting on my desk at work to remind me to drink more.

I had been envisioning that I had 5 spots on my lungs and some in the lymph nodes between the lungs. I was trying to zap them with brain waves (can't hurt!). I asked Dr. Puhalla today if I could see the PET scan and see the spots. Unfortunately, there were many more than I was imagining, between 20 and 25. However, they weren't as big as I had imagined. I'll take that as good news. I didn't want to see the spots on the 12th as I was still in so much shock. I needed to put some time behind me.

I am extremely encouraged with today's appointment. To all who ask "how are you feeling?" I feel fine. I have no symptons, no pain, etc. This does not mean, however, that you need to stop putting me and my family in your prayers. I appreciate all the help I can get!

A friend of mine told me what his mother said to her cancer doctor when he told her she had only 6 months left. She said "I'm not done pissing off people". She lived another 10 years before it got her. Those who know me, also know that I am not done pissing people off....

And...in case you noticed, as of this post, I've decided to stop using initials for people. I'm gonna call them who they are. Dr. Lembersky is Dr. L, my medical oncologist. Dr. Puhalla is new to me so I hadn't called her by her initial. Dr. Z, my surgical oncologist, is Dr. Ziauddin. His name is too hard to say for most people so his office called him "Dr. Z".

Anyways, *I* feel good about today and excited to start this new journey. Just hope it doesn't take too long.

Take care peoples.

Suesan