Insomnia

Hey all. It's Candace posting under Dennis' alias because I'm on his computer and he hates it when I "mess" with his logins. God forbid he has to take two seconds to type in his password. It's almost midnight and I'm wide a friggin' awake. Today is Turnaround Tuesday, the switch has been flipped thankfully, and I had a good, busy day. Nonetheless, this is what I get for endlessly sleeping the past 72+ hours. Ironic that I can sleep hours on end and not feel the least bit rested one day, and the next day I actually should feel tired but instead I'm killing time blogging until I can convince my restless mind and body that we really should get some sleep. This is a pattern actually. It happens when I'm on the rebound from chemo. My back and neck aches, I can't find a comfortable sleeping position, so I toss and turn, and my mind is racing. When I do finally fall asleep, it's also when I have my most vivid dreams, often nightmares. I have dreamt I was in a flood and once that I chopped off children's legs at the knees because I thought they looked better shorter. When I realized what a horrible person I was to do this, I too had stubs for legs. Typical nightmare, I wake up in a panic, then relief that none of it is real. Chemo drugs are some mighty powerful poisons.

My onc has ordered a pulmonary function test for this Friday. This should have been done in the beginning, but she doesn't do it unless the patient has breathing difficulty, which I don't. We (Dennis and I) were a bit relentless though at the last visit, claiming permanent lung damage would ruin my life because I'm an athlete and activity is so important to me, etc. In fact, I want to drop the Bleomycin if my midway PET scan comes back clear. The Bleo is the drug that can (rarely) cause permanent lung damage. "Rarely" is not good enough odds for me when it comes to ensuring an active lifestyle for the rest of my life. There are plenty of cases where cancer patients developed breathing problems, the Bleo was dropped, and they still went into remission. What I don't know, but there must be a statistic on this, is how many of those cases stayed in remission or had recurrences? Dr. Chase should be researching this for us.

Alrighty, I think I'll call it a night (again) and see if I can fall asleep. Sweet dreams for you and me. - Candace

My two sick girls

Happy after Thanksgiving everyone!
We had a nice time in Bethel on Thursday with my mom, brother, sister, brother in law and my two nephews. We drove to Auburn after eating WAY too much and stayed with Candace's parents before heading to Camp Chemo on Friday. Candace even got up at six AM to do a little pre chemo Black Friday shopping with her folks. All went well at camp but Candace did say she was getting nauseous prior to starting treatment. It seems that just the thought of the drugs is enough to make her sick now, so she started her regiment with a shot of Ativan and then slept through most of her treatment. One more and she is half done!
Candace was quite sick the night of the chemo and she had to race to the toilet for evening prayers. She almost made it (clean up in isle three please). After a good nights sleep (by her, I had to tend to a sick dog, hence the title) she felt much better and managed to get down a big breakfast of bacon and eggs with an english muffin. Unlike after the last chemo where we had a house full of guests, this time around all is quiet and she has been able to sleep most of the day. Last night she woke up to eat and then to watch a movie before bed and this morning she had a quick bowl of oatmeal before heading back to bed feeling a bit queasy. She woke up when Sadie and I returned from our morning walk at the beach and said she feels better, rolled over and went back to sleep. Ah, the life of a person with poison running through her body. We are both hoping today will be the last day of the blah and we can have a turn-around on Monday.
Next weekend we will be heading back to Sunday River to participate in the Santa Sunday toy drive. It is a lot of fun and Candace will be dressed up as Santa for the morning of snowboarding. The event is to raise money to buy toys for under privileged kids and has the added benefit of three full days of snow boarding for ten bucks for those participating. The mountain donates the passes and the money raised goes to the Bethel Rotary Club to buy the toys. What a deal! Look for pictures next week and check out the SR web site to learn all about it www.sundayriver.com/santasunday.html
Be well, and send your happy thoughts!

Happy Thanksgiving

Hello Friends, family, and newcomers. I just wanted to wish everyone a Happy Thanksgiving and to say that this Thanksgiving I am thankful for all of the support you have given me. I am thankful, too, that the nodes are shrinking and I believe the cancer is leaving. I am thankful for modern medicine, for people who love their dogs, for people who love other people, and for the internet. There is so much to be thankful for, I hope you all take a moment to realize what you've got and be thankful. One more thing I'm thankful for is that my blood counts are all roughly the same and I still feel good.

I have felt great this week! I worried that snowboarding might have been a bit much, but I continued on into the week with normal energy and never looked back. I even cleaned my own house and enjoyed it. Maybe I'm not as well as I think ;) I dread giving all of this up on Friday to chemo and four more days of blech. (I'm thankful I only have four bad days!) We are going up to Bethel to have Thanksgiving with Dennis's family. Leaving tomorrow night. So, until Friday, I will eat a lot, relax with family, walk my dog, breathe in cool mountain air, and love my life. Then, life sucks, but I don't want to think about that yet. There's a holiday between now and then! Yippee!

Chemoboarding

Well, it is confirmed; You can fight cancer and still get in some early season turns.
Today we headed to Sunday River for a day of fun on the snow. It was my second day out but Candace's first and we didn't know what to expect. Candace is feeling great but this is the most physically challenging thing she has done since she started chemo in October. Well, I can say without a doubt that she is in full form on snow. It looked like she had just stepped out of a snowboard mag as she headed into her first run and she kept kicking butt on snow all day. We kept riding until we both could barely walk and decided to call it a day around noon. All in all a great day on the hill. It made us both feel like life was back to normal. We hope to get out as much as we can on the "good" weeks all winter long.
Here are a few pics.

Pro snowboarder Candace

Yup, no hair under that helmet.

Our legs are so tired we have to hold each other up!
Be well....

Superpower

THIS TIME post-chemo I have developed a superpower. I now have an all powerful sniffer. Ultra Sensi-shnauz. If there is an odor out there, I will know it and it will likely make me nauseous. My everyday life smells are so strong... and unpleasant! My dogs, my linens, the grocery store among other things turn my stomach now. And another thing ... just thinking about any aspect of chemo makes me have a visceral reaction. Now that's powerful associations, and dangerous. I have too many more cycles to go for this to be happening already. Think rainbows and bunnies, rainbows and bunnies!

One more cycle (2 treatments) and I will get a PET scan. I should know before Christmas if the cancer is gone. (I hope, I hope) The neck nodes have remained fingertip size, a little disheartening for me since they had been continually shrinking, but that could just be scar tissue. It's all in the PET.

Red blood cell counts rebounded and I'm not anemic for the time being. White counts are hovering at 2.6. I'm pulling the VIP card out for a blood count tomorrow at Pen Bay, so we'll see :)

Pretty quiet week, thus far, except Sadie has been sick. Poor baby dog. Hopefully we have her vomiting in control with a bland diet of boiled chicken. She is also limping, thus is on light duty walks until we see improvement. Worrying about her ailments has taken my mind off of my own ailments. I hope to be snowboarding this Sunday though. I absolutely have to take advantage of my good weekends.

Keeping it short 'cause it's late.

The Fam

I know... I am bombarding the site with posts. Sorry about that! =) Read the two posts that follow this one for a complete weekend update.

As you may know, Candace is doing a photo essay of sorts about her experience and we were taking some photos for that today. We decided to do a shot with the women in our family - Candace, Mom and me. We all had our special necklaces on (Candace's says Courage, Mom's says Strength and mine says Hope) and I think the pictures came out really well. I'll share them with you in a bit. I am also going to include a fun one of sis with our stepdad Bill - they have the same haircut now!

Oh, and Mom did indeed cook for an army... I am so full, have been all weekend. We ate white lasagna, garlic bread, moose steaks, pie, cream puffs, blond brownies, M&M cookies... Mom does love to bake and we gave her a hard time about it for most of the weekend. =) She was a good sport about it though.

I fly back to NYC tomorrow and I am sad to go. I love being with my family SO much, I'll miss them when I leave. I am very content that I was able to experience this with my sister and that she had her best post-chemo reaction yet! We talked a lot, laughed a lot and I even gave her a mini-manicure. Good times. I'll see everyone again in about a month and a half and I can't wait!

Here we are laughing at something - I don't remember what - but I think this picture captures our family dynamic well.

Aren't we cute!?

Matching Q-balls!

My visit to Camp Chemo

Hey again everyone,

Sis has gone to bed, so I figured I'd post about my experience at Camp Chemo. I must say, I wasn't sure what to expect, but it was A LOT more pleasant than I imagined. Everyone was so friendly and they were funny and really great with my sister. We all laughed quite a bit.

I felt a bit awkward at times because my sister and I would be talking and we'd laugh and I felt like I was being too loud. Candace said it was an unusually quiet Friday and sure enough, by the afternoon, it started to fill up.

She did such a great job - so calm about everything and smiling. She did say she felt queasy even before the first drug was given - a Pavlovian response of some sort, I am sure - but she was a trooper! I kept worrying that she was going to get sick or miserable, but she had great energy up until she got half-way through that last bag of drugs. She laughed at me because of all the pictures I took... she got up to go to the bathroom at one point and I asked if I should document her trip. She burst out laughing saying she knew I was going to say that!

Here's a little slide show of my Camp Chemo documentation:

Shave and a haircut... two bits

We are having a great weekend so far! Sis is feeling the best she ever has post-chemo and it's so wonderful to see her. One of our orders of business this weekend was to shave off her hair. See the fun slide show below:

Expecting a Visitor

I am eagerly awaiting the arrival of my sister from NY. She comes in at 10:30pm as long as flights out of JFK are on time (crossing my fingers). I have been informed that I cannot go pick her up and should be snug in bed at that time. I feel fine, slightly tired, but my red blood counts went down at this last count. I'm anemic. Unlike white counts, this one affects how you feel - tired and logy. They can't be too much lower because I don't feel like I have less energy than normal. Still, everyone wants me to rest, and they're right so I will have energy to whoop it up this weekend with my sis! Shopping, dining, spa and theatre! Yeah, right. More like movies, napping, and movies, woo-hoo. I only see my sister a few times a year and she comes when I can barley move off the couch. If she had only come on an "off" weekend... but she wants to share my experience and be there for me in my darkest hour. Very sweet, but it will be boring. Don't say I didn't warn you. At any rate, I'm thrilled to see her and we'll enjoy our time having an animated, lucid conversation for the hour drive into chemo tomorrow morning.

I'm excited about our one major planned activity, besides eating (Mom is cooking again for an army), and that is head shaving! Good-bye hair that IS NOW noticeably thinning on top. My natural part has widened into the Grand Canyon. It's time and I have clippers all ready to go. Pictures and stories forthcoming, but give me until Turn-around Tuesday. - Candace

My Onc Visit, a retrospective

This is a blog entry I started last Friday while I was getting juiced. I didn't finish and then I left the land of the living for several days. It had some good info so I added the last paragraph and decided to post retroactively. For more recent happenings read the next one I posted earlier today.

We are live at Camp Chemo, which happens to be a perfect place to blog because I am stuck in place with not much else to do. I’ll save my movie for later when I get fed up with the snoring coming from the cubby next to me. All is going well. The only different thing today is that I’m getting a flu shot. Unfortunately, I can’t use my port for that too. It has to be injected into muscle. I thought my port was the answer to everything painful.

I saw the onc today and she is pleased with the progress. The nodes I can touch are fingertip sized now. Isn’t that great!? One more treatment and in theory the cancer should be gone. Another month and a half and I will get a PET to confirm that there is no cancer left. Then the following three months are security chemo to make sure the cancer stays gone. I also realized that I am in the single digit countdown now – 9 more treatments to go. Hey, is that a light up yonder beyond that tunnel?

I asked Dr. Chase about white blood cell counts and got the scoop. Before chemo started my WC (white count) was 8.1. The week after chemo was 4.2, then 3.something, then 2.4, and today is 2.5. They are low and will stay low, but not dangerous. The dangerous point is 1.0 or less.

More good news is that Kelly Kane is officially a Hodgkin’s SURVIVOR. Her final scan came back clean and she is now pronounced in remission. Congrats to her! Her blog is listed as a link to the left.

Some other news, neither good nor bad, is that my hair is falling out fast and furious now. Showering takes twice as long because of hair management. I have to collect as much hair as I can for trash disposal so it doesn’t clog the drain every shower. I would have good use for a pocket lint roller if there was such a thing as I leave hair on headrests, jacket collars, my pillow, and, well, just about everything. Something kinda funny was seeing all the strands flying around like a ticker tape parade when I was blow drying my hair. Only funny until I looked at the floor after all calmed down. Grumble, grumble about the clean up. Thank God I got a haircut and the strands are shorter, yet still not short enough for my strained patience. I see Haircut Part II in the near future. I said I’d wait until it’s noticeably thinner but I didn’t say to whom. Dennis and I concur that we notice; although, no one else would. Perhaps when my sister is here in a couple weeks a fun activity would be to shave my head. Are you up for it sis? Anyone want to be an accessory and have clippers I can borrow? - C

In the eye of the storm

Ahhh....sweet weekend. My good weekend. As a bonus, it's a windy, rainy, cold day thanks to Extratropical formerly known as Hurricane Noel. That's why I entitled this entry the eye. It's a perfect day to hunker, collect one's thoughts, and recap this week's events. For me that started with NAUSEA. Once again, the side effects directly after chemo elude prediction. Last time, I had NO nausea. This time, while no vomiting, undertones of queasiness for four days. Yes, I took the Ativan (the stupid, sleepy stuff) and even tried the other pills that scared me because they were known to make people involuntarily twitchy. Freaky. I didn't want to be sleepy, so I took scary pills with a Benadryl chaser which takes care of that weird side effect. I believe that is when I slipped into that marathon sleepfest Dennis mentioned. And that was the alternative to Ativan? Come on!

My parents came up for the weekend and brought food, even if it was moose meat. Yippee! It only cost us a solid day of watching Lifetime network. Dennis escaped to the basement while I was stuck due to my lack of energy to move off the sofa or even utter a protest. Minor price, I say, for their fabulous help around the house. Thanks 'rents. Oh, the moose meat was quite tasty if you're wondering.

Dennis and I were supposed to drive to camp on Sunday, but I felt too nauseous and fatigued to travel hours in a car. On Monday, I still wasn't feeling hot, but we were running out of time. We had to be back on Wednesday and I really wanted to get up there one more time. I decided to go, gambling that I was going to be feeling better at any moment. It was a tough car ride, didn't talk much and tried to sleep the whole way, hoping I didn't just make a mistake.

Everyone has their special places that are worth nauseous car rides and Camp is one of mine. It is at Upper Dam between two beautiful lakes, a place so pristine and untouched. There are no phones, no internet, no noise, and it's darn COLD this time of year. Dennis was my hero, the firemaster, making sure that camp stayed toasty with its two wood-burning stoves. He got up with me twice each night. He stoked the fires and I used the restroom. The place stayed right around 60 degrees while it dropped into the 30s overnight. By Tuesday, someone flipped a switch and I felt 100% better. Ah, finally something that is reliable treatment to treatment - Turning Point Tuesdays. From then on it was a great mini-vacation. I went for walks, cooked meals, and took pictures which are in the slide show.

Mouth sores came and went this week, again. Something else predictable. I got blood drawn locally for a CBC, where I have become a lab VIP. I went to check in at registration like last time and she said I have a recurring account, no need to check in, go directly to the lab. I'm too special for paperwork. At the lab there's a standing order for them to take my blood whenever I show up. So, In theory, I can go in more than once per week and they HAVE to take my blood. Not going to test it, but that's V-I-P I tell you. Next time I'll be aware of others waiting with no paperwork and give them a wink or a nod. And I want my name engraved on a little gold chip and hung on a wooden board with other VIPs. Thanks.

Oh, great job everyone coming up with boat names for our little vessel. They have been good, but nothing has jumped out and grabbed us as yet, so we're still taking all your thoughts. Love, Candace