Father's Day

I cannot believe that it has been almost a year since my last post. I think things got a bit overwhelming for me and it took a while to get back to it.

We had a great day today! We (Paul, Amanda, Emmy, and I) went to breakfast with Dad T., Rose, Kathryn and Jack. We came home and went for a quick bike ride, then went out to see "Up" with Kathryn and Jack. Great movie. We had a nice dinner and enjoyed our fabulous ice cream cake, prepared by yours truly plus Amanda and Emily.

It was a busy weekend with The Underhills performance Friday night and Michael's graduation party, but I kept up. Yay.

I sent out the following email to some of you on June 2nd, so I wanted to give an update.

"I just wanted to let you know that I am on my roller coaster again. Although I have been feeling really good and adjusting to the new treatment and am excited about my hair growing, I just spoke to my nurse practitioner and my tumor markers are up. So now I feel deflated, my bubble completely burst.

I have only been on this new drug for 2 cycles, so we need to give it more time. I will probably have scans after the 3rd cycle. I really want this to work because my energy level is better and I really want my hair. I am really tired of the wigs and scarves!

Anyway, I just didn't want anyone saying "Oh, I heard you were feeling good.....", and me to have to fake an answer. I need to work on communicating with my family and friends, so here it is. Sorry for venting. I will be feeling better in a few hours! (I bounce back quickly..I just need to take my mind off of this.)"

By day 4 of the 3rd cycle, I was really starting to have problems with my feet again. By day 6 they were really bad, so I called the nurse and she said to stop until I see them. (I was seeing them 2 days later on June 11th) When I saw the doctor she said to stay off the chemo until my feet were 90% better, because my feet would only get worse if I continued, and quickly. They also suggested starting avastin again, because recent studies showed it to be beneficial with the current chemo. So this is good, but my nose was just getting back to normal.

Had scans Monday 6/15. All was good. The area in the liver was "slightly diminished". I will take it. Yay! Started avastin 6/18, and will get that every other week, but will skip 7/2 because I don't feel like spending my birthday getting treatment. So I will get it the following Monday.

That's it for now. See ya...

Only have a minute

I only have a minute, but it has been 2 weeks since my last post! I guess a lot has happened!

Last Monday I saw a speech therapist for my voice. She did another scope (the 1st one I was too much of a wimp for and kept gagging, so she did the nose scope.) Anyway, she thinks the reason for my breathy voice is that my left vocal cord is thinner than it should be, which she thinks is caused by the acid reflux. When I asked for another prescription for medication, they wouldn't give me anything because I was allergic to 2 previous meds. They said you will have to see a GI doc. Yay, another doctor and another appt.

More later.....Amandas need to go to Nickjr.com

Monday's appt, Cycle 14, wk1

Met with my nurse oncologist on Monday. I told her about the other appts and allergic reaction to Protonix. She just laughed and said, "I am glad it is not us doing it to you this time." Things are pretty much status quo- so we will continue on the treatment.

Good news- my tumor marker, which was the blood work drawn 2 weeks ago, was again very low! Yay!

I like to celebrate this type of news in-the-moment because you never know when something can change. So, I don't always share this news, but I have wanted to because I want you to know that things are going well with keeping the cancer under control. And the reason that I am not always so happy and peppy is because I have been on this treatment for 13 months now. (Again, I am very thankful that this treatment has worked for so long, because this will ultimately lead to a longer life!) But, it is still 13 months on chemo. Dealing with the side effects has not been a fun experience and I am tired of being tired.

In the title I mention Cycle 14, wk 1. There are 4 weeks to every cycle. 3 weeks of treatment(Monday's), 1 week off. I think I will talk to my oncologist next week about having 2 weeks off.

Amanda and Emily started camp on Monday. They seemed to have a really good time! In the morning, Amanda said, "I am really nervous Mommy." I told her that she was just nervous because she was never there before, but she was going to have so much fun. What I didn't tell her was that I was nervous too and had butterflies in my stomach! I think it made them both feel better knowing that they had each other there! (Made me feel better, too!)

Another drug reaction??

OK. My rash is worse and very itchy. I feel like I should call the doctor, but which one?? My primary? My oncologist? The Pulmonologist, who originally prescribed my latest drug? Or the ENT who doubled the prescribtion from the pulmonary doc??

These are the decisions that I have to make. And then I think...do I really need to call? I just don't feel like dealing with these things. But I also don't want to be itchy and irritated!

And this also makes me more concerned about the decision to stay on the current chemo drugs, that I have been on for more than 1 year, and is working to keep the cancer really tiny. And it feels so nice to have a little hair, but when I was shampooing this morning, my head felt funny. Is the little bit of hair going to come out? I didn't expect it to stay, but I don't want to lose it. It would be really nice to look normal for a while.

Oh well. That's it. Off to the park with the girls to have some fun!! (Which is what life is all about!)

My Weekly Update

I cannot believe that it has been a week since I last posted! Crazy!

I was able to get an appt with the ENT at Penn on Tuesday. (I guess that is one plus about having cancer- you get sneaked into over-booked schedules because they are concerned that your problem is related to cancer!) Luckily- that is not the case, then again, I pretty much knew it wasn't. The way it was explained to me, is that your vocal chords look like 2 vertical parallel lines. But, I guess due to the months of coughing, my vocal chords are bowed. so the ENT is recommending me to see a Speach Therapist. Whatever it takes, ya know? That is scheduled for June 30th.

I still have not scheduled an appt to see the ortho about my foot. Maybe tomorrow!

This was my week off from treatment, and I must say that I have been feeling really good! And it feels great to say that. Although I have developed a rash, an itchy rash. I have no idea what this one is from. My list of medications and drug allergies just continue to grow.

The good stuff:
My sister Val had a baby girl on Tuesday. Her name is Aubrey Katelyn. I have not met her yet, but hope to tomorrow!
And my sister Andrea is expecting again! Her babies will be 12 months apart. Good luck Andrea!

I saw Sex and the City last weekend with some girlfriends. Loved going out with the girls and also loved the movie!

I am enjoying having the girls home from school the past 2 weeks. It has been nice not having to get up and out the door every day. Two days this week we didn't even get in the car. (Unheard of!) But it has been fun and even a little (teeny tiny bit) relaxing.

Hope you are enjoying this beautiful weather and all doing well!

Update

I was just reading on one of the websites that I often go to and someone referenced a posting from Leroy Siever's blog. I have been wanting to check it out for some time, but just kept forgetting when I had the opportunity. I really did not get to read much of it, but what I read, I was completely able to relate to. (That just seems scary to me.) I guess I just didn't realize how much I was learning/feeling/ managing over the past 2 years, since my stage 4 diagnosis.

I do know that I am so sick and tired of doctor appts, and tests, and having to make a million phone calls to schedule everything! It is just ridiculous! There is always something new going on and it needs to stop.

Quick update:
Chemo Monday. Almost uneventful. I complained about pain in my upper left arm a few weeks ago (possibly tendonitus?) and the last 2 weeks numbness and tingling in the lower left arm. They sent me for an ultrasound on the arm to rule out a blood clot. No blood clot. Lymphedema? Who knows. Hopefully nothing.
Tuesday- follow up with pulmonologist. They reviewed everything and only 1 number from the pft was lower than normal. At this time, they are not concerned about it. Follow up in 2 months. Recommend seeing ENT to examine vocal chords- since I have not had my normal voice for like 2 months.
Thank you Donna, for watching the girls all day Monday, and to Beth for watching them on Tuesday!!

Considering Wednesday is my hardest day of the week, I had a very nice day with my girls. We did nothing special and enjoyed it anyway.

I am excited for the busy weekend coming up. Friday night I am going to see the Sex and The City movie with a few girlfriends. Yay! Saturday we will be getting together with friends and Sunday we will be visiting both families for Father's Day. And no treatment on Monday! Woo-hoo!

School's Out!

Amanda finished kindergarten on Friday!! Actually, Thursday was her last day in class and Friday was the Kindergarten Carnival. Both girls got their faces painted for the first time and we all had a lot of fun! Later when we were home, I asked Amanda if she was excited that school was over. She said, "Yeh, but it is Saturday, then Sunday, and then I go back to school on Monday to watch the rest of the movie." Then she was telling me how much she loves her teachers and will really miss them.

Then I had to leave them and go for another test- PFT, pulmonary function test. Ughh- I did not like it. I should get the results on Tuesday, when I go for my follow up with the pulmonologist.

When I got back home the girls were having a great time in Miss Kathleen's little pool with several friends. (Thank you for watching them Kathleen.) They ended up playing outside until about 6pm! I didn't realize that I was getting sun and ended up with a line across my forehead, because I was wearing my scarf.

Paul went golfing Saturday morning with guys from the neighborhood- It was a Fathers Day golf outing. He had a good time. Afterwards there was a party for the families. We had a great time, but man was it hot! The kids were in small pools, which later looked like mud pools- but they had a lot of fun!

I have to go now and head off for chemo! Oh yay!

Hope everyone is doing well and staying cool. (98 degrees today??)