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What a long strange trip

Sun, 13 Jul 2008 21:24:48 -0600

I’ve been trying to think of something profound to say, as I have decided this is my last entry. But nothing really comes to mind, just that I am extremely happy to close this chapter in my life. I got my port taken out on Wednesday, so I am officially done with all of my treatments! Although I should be elated, and I am, I am somewhat bummed, only because I was unable to finish the herceptin treatments. My declining heart function never reversed itself, so my last treatment of was back in May. I had another Muga scan a couple of weeks ago, which showed even more decline (despite being off the drug for 5 weeks), so my doctor called it quits. So we had a very anticlimactic end to my treatments! Since I was not supposed to be done until October, my big “celebration” is not until November - I am going to Rome with my friends Marci and Jill to visit our friend Debbie who lives there. Needless to say, I can’t wait, but it’s a long way off. For now, I am just enjoying the summer with my boys and relishing in not having to drive to Salt Lake for something miserable. I am even golfing on Tuesday with friends in a “Rally for the Cure.” It feels so good to be normal!
Darren took the above picture just before we left for the hospital to get my port taken out. (Jack has worn that hat every day this summer!) As you can see, my hair is even puffier now - we are heading back east on Friday and I can’t even imagine what the humidity will do to it! We’re all so excited for our trip (since we didn’t make it last summer) - we’re going to visit my family in NJ, Darren’s in CT, friends in New York and Philly and even go to a Bruce concert at Giants Stadium! It is sure to be an exhausting but super fun trip. We return to Park City on August 1st, then head to Colorado the next day for another week. There we are staying in Breckenridge while Jack goes to hockey camp. I am excited to visit my brother who lives about an hour or so away, we haven’t seen him in a couple of years. I feel like we’re doing a victory tour!
So thank you all for your endless prayers and for checking in with me on this blog. It has been very therapeutic writing this, but I’m ready to move on. . .
Ciao! And God Bless,
Kathi

What a gorgeous day

Sun, 8 Jun 2008 15:15:13 -0600

Couldn’t help posting this amazing picture that I took (on my phone no less!) today on a hike with the boys. You can see our neighborhood off in the distance and beyond that is the Canyons resort. Finally some beautiful weather, although it was a tad bit windy, but I’m not complaining. The boys had a great time on the hike and Jack keeps asking when we can do it again! Sadly I can barely keep up with them anymore. But hopefully in the months ahead I can get back to something that resembles “in shape.” At this point I’ll settle for just “sort of!” Summer camps start tomorrow. . .
So far no side effects from the Arimidex that I have to take every day until Brenden is 13 and Jack is 11! I started June 1st and will stop June 1st, 2013, but who’s counting?
Have a good week,
Kathi

A celebration

Sat, 7 Jun 2008 12:53:47 -0600

On Thursday evening “Team Kathi” celebrated the end of my radiation and quite possibly my treatments with a sunset toast and an amazing pot luck dinner. It had rained the night before and most of the day on Thursday, but the sun came out “just for us,” so we were also able to go for a little “hike” before we started celebrating. We had such a great evening and I truly haven’t laughed that hard in ages. Above is a picture of my friends Stefani and Amanda, who just finished pouring champagne for our toast. Yum! Stefani is the organizer of my support team and Amanda opened her teepee to us for the occasion. I am so lucky to have such amazing and wonderful friends! I am celebrating now because my skin is finally starting to heal from the radiation. I have to say, it was “touch and go” for a few days. I was in the most pain I’ve been in during this whole ordeal. I truly feel sorry for burn victims, there really is nothing worse. The boys and I had a very lazy week, since it was their first week home from school and it rained most of the week. Hopefully next week be nicer!
Have a wonderful weekend,
xo,
Kathi

Last day of school!

Fri, 30 May 2008 17:19:09 -0600

We are officially done with school and I am officially done with radiation! Yeah!!! I had my 33rd treatment yesterday and none too soon, as my skin has really started to protest. I have had to apply a dressing the the area below my arm, because that appears to have taken the worst hit. But all in all it really was not that bad, and most importantly, it’s over! I had my heart scan on Tuesday and just as I thought, my heart function decreased again, although just by 1 %. Nonetheless, the doctor is taking me off the herceptin for about 5 weeks and I will have another scan on June 26th. If my ejection fraction (I think that’s what they call it) doesn’t return to the 50s, I will be taken off it for good. So I am very excited to have a little break right now. After all that I’ve been through this past year (it seems like a blur), I really do feel like a survivor. I have started spinning and hiking again and I really feel good. I am hoping to get out on my bike this weekend if the weather is nice. My main goal now is to start recovering from all the poisoning, dismantling and microwaving of this past year. And alas, after many failed attempts, I have even found a hair product that I actually like - “Short sexy hair,” Hard-up.” So things are really looking up!
Last night the boys had karate promotions, so Bren is now a green belt and Jack a blue belt. Yesterday and today Brenden has had soccer try outs, he has decided he wants to play on a competitive team, so he will play all year round. And baseball runs through the month of June, so even though we have no school, the boys are still as busy as ever. But what I love the most about summer is not having to get up and rush out the door every morning. We just rush around like crazy in the evening!
So next in the line of treatments is the hormone therapy, which I will start taking on June 1st. Instead of tamoxifin, my doctor has prescribed Arimidex, which she says has been proven to be more effective than the tamoxifin. So we’ll see. I told Brenden that I have to take that every day until he’s 13!
As for tonight, we’re all going out to celebrate the end of my radiation!
Have a great weekend,
Kathi

Happy Memorial Day

Mon, 26 May 2008 12:14:26 -0600

I didn’t realize it’s been so long since my last entry. We are having a soggy memorial day, but I’m enjoying the down time. I only have three more radiation treatments, it’s hard to believe! I finish on Thursday morning and needless to say I am quite ecstatic. My last five treatments are a quick blast to my scar, so they take about 5 minutes tops. The other area that received the first 28 treatments really held up well, but in the past few days has started to hurt even though I haven’t been treated there for a few days. I think it continues to cook even though the radiation is done, so I’m developing quite a “sun burn” in that area. Not much different than what I used to do to myself with a bottle of baby oil at the Jersey Shore. So all in all, it really hasn’t been so bad. I am eternally grateful to all of my friends who drove me down to my treatments, I think that’s what made it so tolerable.
This past week my friend Marci from SF came to visit and to help out with the boys while Darren was out of town. Turns out I came down with a nasty case of strep throat that really kicked my butt, so I definitely needed her help, especially driving the boys around town to baseball, karate, etc. I was finally put on a different antibiotic on Thursday and am now feeling much better.
I had a great birthday on Friday, May 16th and celebrated with a lunch with friends followed by dinner with friends. We celebrated with the boys on Saturday, so all in all it was a super fun weekend! I am quite happy to put 42 behind me.
So this week I have another MUGA scan on Tuesday to once again access the heart damage caused by the herceptin. If it goes down again, I take a six week break, but hopefully it will not. Brenden has “graduation” on Wednesday and a bowling party on Thursday, so I am doing my final radiation treatments in the morning so I can attend both. Jack has his “graduation” play on Friday morning and then school’s out for summer! I think I’m more excited than the boys, if that’s possible.
My wonderful friends here in Park City are planning a celebration on June 5th to mark the end of my radiation. We’re going to do a quick hike followed by dinner at my friend’s teepee (only in Park City!) I really can’t believe I’m almost done with my treatments. My hair is even puffier now, but who cares? Although I keep saying I don’t know what’s worse, being bald, or having people think this is the way I want to wear my hair! But, it’s thick and curly and at least it’s not grey, so I take solace in that!
The above picture was taken on May 10th at the Salt Lake Race for the Cure. Needless to say, I’m in pink on the left, followed by Julia, Darren’s mom Chris, Olivia, Kristie & Janelle. The “race” was a lot of fun and quite inspiring, so I will definitely do it again next year!
Happy summer to all!
Kathi

Happy 70th Birthday Grandma

Thu, 8 May 2008 19:17:47 -0600

I thought my mother would greatly appreciate a page devoted just to her, marking her advancement in age! The picture above is of my mom and dad with Brenden after his First Communion last Saturday. My parents left on Monday morning as did Darren, so I had a very busy week. The boys both started baseball this week, Jack is playing for the New York Yankees (yeah!) and Brenden the Tampa Bay Devil Rays (who?) All this travel back and forth to Salt Lake along with all the running around I did with the boys this week has finally caught up with me and I am just exhausted. I am hoping a really good night’s sleep will take care of that. I usually sleep much better when Darren comes home and thankfully that’s tonight.
This Saturday I am walking with about ten others in the “Race for the Cure” in Salt Lake. I’ve been told you can’t really walk or run, that it’s more like a “shuffle.” Initially I really did not want to join that “sea of pink,” but I came to terms with it and now believe that it is my duty as a “survivor” (am I called that even though I haven’t finished my treatments yet? At this point I guess I am a survivor simply because I am surviving treatment!) So Darren’s mom and I together raised $1700 for the race and I feel pretty good about that. A huge thank you to all of you who have supported us! I picked up our teams’ t-shirts this week and naturally mine is pink. I was a bit overwhelmed as the woman in front of me had dyed her hair pink to mark the occasion. I am having flashbacks to about 12 years ago in San Francisco when I did the race for the cure (I could actually run it then) and a woman who had had a double mastectomy was standing topless on top of a huge rock like the Statue of Liberty. That vision still haunts me! Needless to say, I will not be doing that! It’s about all I can do to put that pink t-shirt on, but I feel like I would be betraying my fellow survivors if I just wore white (they gave me two, so I do have that option.) Next year I will have to volunteer for the race, their t-shirts are blue.
I finish my radiation exactly 3 weeks from today. Very exciting. I realized today that I had my first chemo treatment on Jack’s first day of school, and I will finish radiation on the day before his last. What a long year it has been for us all! But we’ve made it, and I will celebrate that with all the crazy pink haired ladies on Saturday.
Rejoice!
Kathi

Week Number 4

Sun, 4 May 2008 21:51:29 -0600

My fourth week of radiation starts tomorrow, only 18 more treatments left! We had such a busy week last week, all of which led up to yesterday, which was Brenden’s first communion. First we had a 5K “fun run” at Brenden’s school, which we all participated in. Then we had his first communion, after which we attended the Real Salt Lake soccer game vs. the LA Galaxy. So we got to see David Beckham in action (he scored 2 goals) and needless to say, I was the most thrilled. Above is a picture of the boys with the Real mascot.
My radiation is going well, so far no fatigue and my skin is holding up. Hopefully that will continue. My parents arrived on Tuesday so they could be here for yesterday’s festivities; they leave tomorrow morning. Grandma wants to get back to NJ in order to celebrate her 70th birthday on Tuesday in Atlantic City.
Unfortunately the Mugga scan I took last week revealed a continuing decline in heart function. So my oncologist wants me to do two more herceptin treatments (I did one already on Tuesday) after which I will do another Mugga scan. If the decline continues she will take me off the herceptin for six weeks and hopefully it will reverse itself. If it does not, I will not finish the remaining treatments. (I am supposed to go every three weeks until October). I find this somewhat alarming for two reasons - the heart damage and not completing the treatment. But, my heart function is still within normal limits and there is no research that indicates a year is better than seven months. My radiation oncologist commented that he feels that the treatments are the most effective in the beginning, so hopefully that is true. In any event, I will have another treatment on May 20th and then the other test, so I will know more then. On the bright side, I could potentially be done with all my treatments in June, although I would much rather finish all of the herceptin treatments. That said, I’d rather not need a heart transplant when I’m done with all this. I had a fitness evaluation on Friday in the “wellness center” and all my tests were good, thankfully. I enrolled in their recovery program and am going to be working out with their trainer for 3 months. They also have groups that go hiking, biking and even rowing on the Great Salt Lake, which I thought sounded fun, so we’ll see. I’m not quite sure how involved I want to be, at this point I think I just want to put it all behind me and get on with my normal life!
Have a good week!
Kathi

I hate my hair

Wed, 23 Apr 2008 16:25:34 -0600

Yes, that’s me saying that. Despite being bald just a few months ago, I am already complaining about my hair. That’s because my hair is puffy. It looks like I went to the salon and had it set. I went to the beauty supply store today and asked for some cement so I can weigh it down, but even that didn’t work. But, at least it’s not coming in grey. So I can be thankful for that.
My radiation treatments are going fine. The boys played hooky on Monday and came with me. We had lunch and I gave them a tour of the hospital. I showed them the chemo room - they poked their heads in, turned around and bolted. They said they hated it because it was filled with “sick old people.” So now I’m a sick old person with puffy hair. . .
I’ve had a lot of company this week, so my treatments have been quite enjoyable, I dare say. Yesterday my friends Karon and Alyson took me down, we had lunch and then I did my treatment. Today my friend Heidi took me down again. I am so grateful to have people drive me, because it really breaks up the monotony. On Friday I have to do another MUGA scan after my treatment, as they are monitoring the damage the herceptin is doing to my heart. Hopefully there is none. That test takes forever because they have to inject me with radiation, wait an hour and a half and then they do a scan of my heart. So I will plan on taking a nice nap.
The picture above is Jack on one of our hikes in Moab. Note that he’s carrying a pistol. In a moment of weakness, I bought both boys cap guns when we were in town. Needless to say, they loved them and had a “blast” on the hike listening to the echo. Figured their childhood just wouldn’t be complete if they didn’t know what “caps” smelled like!
Hope you’re having a good week. Love,
Kathi

Finally Friday

Fri, 18 Apr 2008 10:24:04 -0600

I am so glad it’s finally Friday. Today I finish my first week of radiation and it’s not that the treatments are so bad, it’s the driving down to Salt Lake every day that’s going to crush me. Thankfully my friend Heidi drove me down yesterday, so that broke the monotony a bit. My treatments don’t last long at all - 15 minutes tops, but already I’m exhausted. I slept really well last night though, so I feel reinvigorated. After today’s treatment, only 28 more to go!
We had an amazing time in Moab. The above picture was taken on Saturday, enroute to the Canyonlands National Park. We stopped at the side of the rode to climb up to the “Wilson Arch.” Brenden the billy goat made the climb look so easy, so I followed, but my ascent wasn’t nearly as swift! You can see our truck in the bottom right corner, so it was a bit of a hike, but the views were outstanding. We had so much fun hiking and biking that the boys were in tears when we left. So we’ll have to plan some time in the fall to go back down, since the summer is way too hot.
So now we’re in the final push towards the end of school. Both boys are playing baseball and soccer this spring (in addition to the two nights of karate!), so as always we’re going to be super busy. I’m hoping for a short season, since we’re going to have a delayed start due to the snow. It has finally begun to melt and already we can see our front lawn, but the soccer fields are still covered. My radiation treatments will run right up to the boys’ last day of school, so needless to say, we’re all looking forward to summer!
That’s all for now, have a great weekend!
Love,
Kathi

Happy, Texas

Wed, 9 Apr 2008 17:41:17 -0600

Another week has flown by! The boys are on spring break and have been enjoying their time off. Tomorrow we leave for Moab, so I have been packing and getting ready all day. The above picture was taken on Friday before Jack’s Earth Day play. He had to choose a country to represent his nationality, so he chose “Texas.” I gave him the option of England, Ireland, Germany, etc., but Jack, who is very proud of being born in Texas, decided to stay true to his “roots!”
We had some very upsetting news yesterday. My mom called to tell me that my Aunt Phyllis, who came out to visit us in January, was just diagnosed with breast cancer. Unbelievable. It truly is an epidemic. I am hoping that they caught it early so she won’t have to go through all the treatments like I have. She teased me today and said she thought I was having so much fun she decided to join me. I told her maybe she caught it when she came out to visit. Now I’m going to have to go to NJ and organize her tupperware drawer! (Well, at least we still have our sense of humor! )
We’ll be back on Sunday and I start radiation Monday. I will go every day at 1 pm, which gives me the morning to myself, so that’s good.
Love,
Kathi