Tuesday, January 29, 2008

Playing In The Snow


Hi! I don't have much to report from this side of the Internet but it's been a week or so since our last post so I thought I'd add a new one. I'm feeling pretty good. It appears the nausea is under control so I've been expanding my diet. In fact, Kelly and I went to Fuddrucker's (the build-your-own-burger joint) this past weekend. It was our first date out in a long time--it's hard to get excited for a night out when you feel like throwing up--and afterward we both agreed we need to get out more often. Remind me to ask Aubrey if she's up for babysitting every night for the next month! : )

Aubrey, Regan, and Jack had no school on Monday (end of the semester) so they went out and built a snowman. The snowman is gone today after two days of mid-40s temps. Don't feel too jealous about our heat wave though. It was 39 degrees at 4:00 p.m. today and is supposed to be -2 degrees by 9 am tomorrow. Now that's what winter in Wisconsin is supposed to feel like!

Jeff

Thursday, January 24, 2008

movie star teeth atlast!!

Hey people!! this is aubrey and i'm just writing to tell you that i got my braces off finally-i am now completely done with orthodontics!! i still have to wear a retainer to sleep, but it's only to sleep and it isn't uncomfortable of anything. the picture is of my new teeth, and it is SERIOUSLY amazing how much my teeth improved. when i got them off, the dentist showed me a picture of me when i was about 7 or 8 (when i started orthodontics) and i am REALLY happy with how my teeth look. i don't think i could survive with teeth like i had when i was younger! the process was really long and it caused me a lot of mouth pain (a LOT!!!) because it consisted of splitting my palette to widen my upper jaw, which allowed all of my teeth to come in so i wouldn't have to get them pulled. Then i had braces for a year and a half and now, i'm done! all of the mouth appliances i've had are:
-a removable expander on the top & bottom
-cemented in expanders on the top & bottom TWICE!!
-headgear to sleep in
-a cemented in retainer
-braces
-and now (finally) i'm done (& i just have a retainer to sleep in-so it's okay!)
so, yeah, that's all-i just wanted you all to see my new movie star smile! (now all i need is some crest whitening strips & i'll be good!)
love ya all!
<3>

Saturday, January 19, 2008

Three Down, One To Go



Hi! I had my third antiCTLA-4 treatment yesterday in Chicago. While there, I met with one of Dr. Richards' colleagues prior to my treatment. I received some discouraging news and some encouraging news, but overall I feel positive about how things went.
The first thing I do when I get to the clinic for my treatments is weigh in. The pharmacists cannot mix and deliver the Ipilimumab until the nurses tell them how much I weigh. When I went in for my first treatment on Dec 7, I weighed 153 pounds. When I went in for my second treatment on Dec 28, I weighed 145 pounds. This was not surprising to me as I had felt quite miserable during the latter part of December and was not eating well. Since that second treatment, however, I have felt better and have been eating regularly. I had hoped to see a significant weight gain at this weigh-in, so I was surprised when the nurse said I weighed 141 pounds yesterday. That was one bit of discouraging news. The nurses said I need to substantially increase my calorie count. That may sound like an easy thing to do--and it probably would be if I was my normal pre-cancer self--but it's rather difficult when nothing sounds appetizing and you're constantly afraid of throwing up. Nevertheless, I promise to do my best. Bring on the whole milk and protein mixes!

Next, the doctors examined my subcutaneous nodes. I had to point out to them the half-dozen or so new ones that had appeared since my first treatment. That was the other discouraging part of the day. These nodes are relatively harmless and for the most part painless, but their presence is a constant reminder of what's going on inside my body, and I cuss silently to myself every time I find a new one. I felt particularly discouraged about a node that I found just last week. It's at the top of my right hamstring, near the hip. It's deep inside the muscle (which is probably why I didn't notice it until recently) and it feels like it's about the size of a small egg. To discover such a sizeable tumor when I was nearly six weeks into this latest treatment cycle really had me feeling the blues most of this past week.

(NOTE: I thought maybe I should explain what a subcutaneous node is. It is a melanoma tumor that exists just below the surface of the skin. Some burrow into muscle, others seem to rest on top of muscle or bone. I have posted pictures of two subcutaneous nodes. The first is on my right clavicle; you can see the bone stretch out in a line to the left. The second is on my left side. It's a bit out of focus, but you can see how it bulges under the skin. You also will notice that there is nothing special about subcutaneous nodes. They're just lumps under the skin. The only reason the doctors get excited about them is if they start turning red, which means they are approaching the surface and could become open lesions, or if they impair mobility or functionality. Anyway, that's just some info in case you were wondering. Now where was I?)

I mentioned that I had encouraging news, however, so let's get down to it. The first bit of good news is that my blood test results showed that my LDH level, which measures the health of the liver and is considered to be an especially important marker for melanoma activity, had gone down. A normal LDH level is less than 190. Mine had been at 245 in November, but has gone down to 217. The nurses said many factors can influence the LDH level, but a downward trend is generally a good sign. Another bit of encouraging news is that all but one of my pre-existing subcutaneous nodes--i.e. the seven or so that I had when I went in for my first antiCTLA-4 treatment and that were measured by the doctor in November--have decreased in size. The doctor and nurses seemed quite pleased with the declining LDH level and the shrinking subcutaneous nodes. They also felt encouraged by the fact that I have been feeling better. All in all, I came away with a good feeling about how things are going and hopeful that the treatments may yet fulfill their promise.

My old friend, Dustin Bailey, accompanied me to Chicago for my treatments. He flew in from Lincoln on Thursday and flew back home today (Saturday). He was a great companion, and we celebrated the successful infusion by hitting Booby's on our way home. That sounds much worse than it really is. Booby's is actually a cafe located about a block away from where I get my treatments in Chicago. The oncology nurses recommended we try the Booby Burger, which consists of a burger covered in cole slaw, pickles, onions, and BBQ sauce. I had to pass on that one, but Dustin put it down with gusto! For those who might be concerned, everyone in the restaurant was fully clothed and the name of the joint is evidently a nickname of the owner, who happens to be a man. We didn't bother to ask for an explanation about that.

The fact that Dustin would come see me really means a lot, and it makes me think about something that happened long ago. When I was in Boy Scouts, I became friends with a boy named Steve Goodwater. It's no wonder I liked him right away. He was athletic and smart, alwasy ready to help build a campfire or raise a tent, had a good sense of humor, and was ready to stomp off into the woods to look for adventure whenever we got the urge to find it. I knew Steve for several years and shared a tent with him on countless campouts. I wasn't his best friend--we went to different schools and he was a grade ahead of me--but he was one of the reasons I always looked forward to our next troop meeting or campout.

Several years into our friendship, our troop leaders decided to give us a treat and took us all to the mall to watch a movie. I still remember that night. We saw "The Right Stuff." I also remember that I sat in the front row because Steve's back was hurting--which had become a frequent complaint from him--and he wanted to lay on the floor rather than sit in a chair. That was okay by me. I had never sat in the front row of a theater before and thought it would be fun. After the movie ended, we said good bye and went our separate ways.

That was the last time I saw Steve.

A few days later, I received a call from Annette, the mom of another Boy Scout comrade. She told me that Steve had gone to the hospital a few hours after we finished our movie. He couldn't sleep that night and was in great pain. They ran some initial x-rays and had discovered several "growths" as she called them. She said they didn't know much else at that point, but that we should keep Steve in our prayers. This took me by shock, of course, and I remember wondering what she meant when she said "growths." To my naive 14-year-old mind, it couldn't be too bad if it was just a "growth." Unfortunately, the situation became much clearer when she called back. I remember her words almost verbatim: "Jeff, this is Dave's mom, Annette. They determined that Steve has cancer. In his neck, back, lungs, and legs."

Steve died several months later. It is one of the chief regrets of my life--and I have only a couple--that I never went to visit him. I'm sure if I had asked my parents to take me, they would have. But I never asked. I don't know exactly why. I suppose it really doesn't matter.

The reason this story comes to mind is that it stands in such sharp contrast to the recent actions of some of my friends. I only had to travel a couple of miles to see Steve and was too--I don't know: lazy? afraid?--to do it. But I have friends like Dustin who flies 600 miles to see me in Milwaukee--or Marc Schulte and Tony Popanz who both flew cross-country to visit me in Houston, or Katie Clancy and my uncle Tom who trekked in from the Wild West to see me in the neuro ward after my craniotomy, or Brendan and Meaghen Gardiner who drove six hours round trip to visit with me for two hours at a Chicago fundraiser. This story puts their actions in perspective and enables me to fully appreciate the extent of their efforts. I truly cannot thank them enough.

Jeff

Friday, January 18, 2008

A Busy Day

Hi All! Kelly again. I just wanted to give everyone a quick update. Hopefully, Jeff will add to it later.

Jeff's friend, Dustin, arrived last night. We had a great time visiting with him. Jeff was eager to show him around the house and they talked about home maintenance, their children, and the Cornhuskers (of course!). After Finny went to bed, we introduced Dustin to a late-night treat: microburgers and garlic fries from our favorite restaurant in the whole world, "Firefly" in Wauwatosa. Go there, if you haven't. You'll be glad you did! www.firefly-grill.com

This morning, the house was a circus of activity. Jeff and Dustin were getting ready to go to Chicago for Jeff's third anti-CTLA4 treatment; Jack was getting ready for school; Aubrey and Regan were packing for Camp Angel; and Finn was slobbering in his high-chair. Meanwhile, I was trying to coordinate the girls' packing efforts and also get everything ready for my friend, Barbara to babysit Finn.

Aubrey and Regan left today to go to Camp Angel (www.angelonmyshoulder.org) for two days of fun Up North (in St. Germain, Wisconsin) with approximately 30 other kids affected by cancer. Jeff learned about the camp through his oncologist's office. It is for children who have a parent, sibling or grandparent that either has cancer or has died from cancer. It's meant to be a weekend of fun when they can forget about being sad and just enjoy being with other kids like themselves. They are going to go dog-sledding; snow-shoeing; rock-wall climbing and do all kinds of other fun activities. They get to make the 4-hour ride to camp in a fancy coach bus with big seats, snacks, and TVs (and a dvd player). They were both really excited to go. I can't wait to hear all about it when they come home on Sunday.

In the meantime, I just want to say "Thanks" to Barbara for entertaining Finn today. Barbara is "super-Mom," so, I'm sure she'll have him walking and talking by the time I get home from work! Thanks also to Jennifer for bringing Regan such a cool camping bag this morning. She was thrilled (It has wheels! It has a handle! It snaps!) She loved it and felt very special!

Well, hopefully, Jeff will have more to report after his treatment today. Until then . . .

Tuesday, January 15, 2008

An Historical Anecdote

Kelly here. Don’t be alarmed–I realize you usually only hear from me when Jeff is incapacitated. Through bio-chemo and brain surgery I commandeered the blog to keep everyone updated on his condition and to solicit prayers and well-wishes. This time, I’m writing just for fun. At the first of the year, we added a counter to the blog so we could see just how many people follow Jeff’s story. It’s been amazing to see how many people check-in everyday. I feel like I should give updates more frequently to keep everyone interested and connected. (This is Jeff’s "daily" update, after all). I trust that getting updates only two or three times a week makes them all the more exciting as the anticipation builds!

Not much is new, but we do have some good news–Jeff’s good friend, Dustin, is coming to visit this week. Jeff and Dustin went to high school together and have remained friends all these years. Dustin is going to accompany Jeff to his third anti-CTLA4 treatment in Chicago on Friday. We can’t wait to see him. I’ll always have a special place in my heart for Dustin because he played a pivotal role early in my and Jeff’s relationship. The story goes like this:

I loved Jeff from the moment I met him. (Remind me to tell you that story sometime). But, we lived nearly 300 miles apart and were not yet even Juniors in high school. Nonetheless, we wrote each other incessantly and wanted desperately to see each other again. It was the summer of 1989 and I was employed as a dance hall girl in a summer theater with a wild west theme. Don’t worry–it was a family show! (This becomes relevant later). One day, I received a letter from Jeff notifying me that he had secretly made arrangements to come visit me in Ogallala (my little Western Nebraska hometown). The letter informed me that he and his friend, Dustin, were going to plan a "camping trip." But instead of going camping, they were going to come to Ogallala. Brilliant! I ate the letter to dispose of the evidence (just kidding). So, I wrote Jeff back and said the plan sounded great and I would take care of things on my end. When the appointed day arrived, Jeff and Dustin executed the plan. They left to go "camping" and both Jeff’s parents and Dustin’s parents were none the wiser. Until . . .

Jeff’s sister Mary Margaret (who was 11 years old at the time) informed Jeff’s parents that she had come into a little information about the ole’ "camping trip" due to a not-so-accidental review of the letter I had sent Jeff confirming the viability and details of the plan. In other words, Mary Margaret had snooped through Jeff’s stuff; read my letter; and tattled on him. Jeff’s parents immediately put their own "plan" in motion which was, chiefly, to get to their son before he got to that good-for-nothing saucy little temptress in Ogallala. (Hey! I said it was a family show!)
Now, this was back in the olden days before cell phones and global positioning devices were in vogue, so Jeff and Dustin were on I-80 in the Chevette–totally oblivious to the drama unfolding back in Lincoln. While they were driving, Jeff’s parents had notified Dustin’s parents of the dilemma and were also making persistent efforts to contact me. I was ON-STAGE during one of my dance hall performances when the bartender called me down with a very concerned gesture to come to the back and answer the phone. Taking a call in the middle of a show was unprecedented, so I was sure Jeff and Dustin had perished somewhere near Kearney and I would be sick with guilt knowing they met their end all because I was just so irresistible! (Ha!)
I was only slightly relieved to find it was Jeff’s mom on the phone insisting that I confirm his whereabouts and that I command him to return to Lincoln as soon as I caught sight of him. (Yeah, right.) When Jeff finally arrived, I was (ironically) in the middle of a gun-fight during the pre-show. I ran over to him and told him that his mom had called; she knew of the "plan" and he was to call her right away.

Jeff talked to his mom but decided that since he was already in the biggest trouble of his life and had gotten Dustin into a similarly sticky situation with his own parents, that they should just stay in Ogallala for the rest of the evening and have whatever fun they could on (what would be for them, anyway) the last day of summer.
So, to make a long story not so long, they stayed and watched my second show. We ate dinner and went to the lake and had a generally glorious time. Dustin and Jeff left early the next morning with a package of sweetrolls from the local Sixth Street grocery store and a story that has lived for nearly 19 years.

Yes, Jeff and Dustin got grounded for the rest of the summer. Yes, Jeff was no longer allowed to drive the Chevette. Yes, Jeff had to go apologize to Dustin and Dustin’s parents (which, if I remember right Jeff and Dustin both endured with barely-suppressed laughter). But, the trip fortified our relationship and is something we still talk about today. And it’s only now that I understand why this "trip" was such a big deal: Jeff was very obedient and self-disciplined. It was completely out of character for him to up-and-leave like he did. Especially for some girl. Fortunately, that girl turned out to be the mother of his children or the story might not be so sweet and enduring.

So goes my first meeting with Dustin. And even though Jeff (and I) got him in huge trouble, he is still our friend–so much so that he is coming all the way from Lincoln to help us and comfort us and make us laugh, no doubt. Either that, or he’s coming to exact his revenge for the trouble we put him through that summer!

Kelly

Wednesday, January 9, 2008

Santa's Little Helper


Hey everyone! what's up? this is aubrey here :) anyway, i'm posting this blog to say "thank you" to the anonymous person that got us the black "Martin" acoustic guitar. it is an amazing guitar-and yeah-i've seen a lot of guitars! it plugs into an amp., has steel strings & it has really nice sound. the tag on the case (which is also a very nice case) didn't say who it is from. i think my parents know who it is, but i'm not sure. and if they do know, they aren't telling me!!! i really want to know!!! Anyway, i have to go, but thank you SO much again-whoever you are-for the beautiful guitar!

love <3,

aubrey kate ;) 8) :S :D >:) >:( :* :P [sorry-went a little overboard with the smiley faces-i'm just bored]

p.s. above is a picture of me w/ the new guitar


P.P.S. from Jeff (Aubrey doesn't know I'm adding this): Isn't my daughter beautiful?!

Thursday, January 3, 2008

One Year On



Hi! One year ago today was the worst day of my life. The day before (Jan 2, 2007), I had visited my family physician to get his opinion about a couple of strange lumps I had recently discovered. He seemed puzzled and suggested I see my dermatologist. For some reason, I decided to drive directly to the dermatologist's office rather than go home and make an appointment for later. The good doctor agreed to see me during a quick break between patients and, after a quick examination, told me he didn't think the lumps were anything to worry about but that I should come back the next day for a biopsy. The last thing he said to me as he walked out the door was reassuring: "I really don't think this is anything to worry about," he said, "but I'd rather have you mad because I gave you a scar than because I missed something."

When I think back to how I felt when I woke the next morning, I am surprised at how calm I was. Despite my history of melanoma, despite the inexplicable appearance of two strange lumps, despite the fact I was about to get a biopsy, I really didn't think this was anything to worry about. Probably because I felt like I was in the best shape of my life. I was exercising every day and eating a healthy diet rich in fresh fruits and vegetables and whole grains. I couldn't possibly have anything wrong with me, right?

When I arrived at the dermatologist's office early the next morning, Dr. Barnett ushered me into his office and we got down to business. Under normal circumstances, it can take days or even a week to find out the results of a biopsy. I knew within minutes. I remember the exact moment when I realized something was wrong. I was laying on the table with my eyes closed as Dr. Barnett made his initial cut and began to explore the lump (it was done under local anesthesia). Then the steady hands of my normally very calm doctor began to shake. As soon as I felt that shaking, I knew everything was about to change. I didn't know the full extent of the problem, of course, but I knew at that moment that my melanoma had metastasized. And from my experience with melanoma in 1995, I knew that metastasized melanoma was a very bad thing.

As Dr. Barnett stitched me up, I asked him what he thought and he said he wanted to wait to talk until we were all cleaned up. He finished the biopsy, left the room for a minute (probably to wash his hands and prepare himself for what has to be the most dreaded conversation a dermatologist can have with a patient), and then returned. He said he doesn't like to scare patients needlessly, but that he had seen enough in his career to know that this was indeed metastasized melanoma. He was kind, he was straightforward, and he promised to get me the name and number of the oncologist he would call if he were in my shoes. We parted with a handshake, and I went home to share this awful news with my family. (On a related note: I have been asked many times for Dr. Barnett's phone number. Here it is: 414-771-1122. I highly recommend him if you need a dermatologist.)

I had remained quite calm through my visit at Dr. Barnett's office. That calmness crumbled as I shared the news with Kelly, who happened to be home with morning sickness that day. I suppose every married couple has at least one conversation of this type at some point during their years together. All I can say is, I had never been more grateful to be married to Kelly than during those first hours after getting the news. We then began to share the news with other family members. The conversation with my Dad was the shortest of the day, but it succinctly sums up the emotions we were all feeling (and demonstrates the seemingly awkward but nevertheless quite effective way that men communicate with one another). I hadn't wanted to disturb him at work but my mom called him to share the news. He called me as soon as he got off the phone with her. Here's a direct transcript of how it went:

"Jeff?"
"Dad?"
"Jeff."
"Dad."
"I'll . . . I'll have to call you back."
"I understand."

The hardest conversation to have was with the kids. At that point, we still knew very little about what we were dealing with so we stuck with the basics: Dad has cancer, he will have to get treatment for it, and life as we know it as a family was going to change but they would always be taken care of. The two questions they had were "is the cancer bad?" and "is Daddy going to die?" They have asked the same questions many times during the past year and we always give the same answers: "Yes" and "We're doing everything we can so he doesn't."

Now it's one year later and I'm "celebrating" (though it isn't much of an occasion to celebrate in my opinion) the first anniversary of my diagnosis. Life has resumed a new normal for us and we're getting along okay. I'm sporting a mohawk these days as my hair grows back from whole-brain radiation (see photo). The kids were back in school today after a snowy Christmas break, Finn is crying for a bottle, I have a Design Review Board meeting for the city of Wauwatosa in about an hour, and Kelly's stuck in depositions until 8:00 tonight. My parents have been in town the past week and we've had a great visit (that's them with the kids in the second picture). I introduced them to the carrot cake from the Mason Street Grille last night; I strongly recommend it if you haven't tried it before. It's so yummy!
Well, that's enough for now. Thanks for all your prayers and support of the past year. Hopefully I'll have some good news to report in 2008.

Jeff