PET scan .... check. I should know the outcome on Wednesday ... if not tomorrow. Though I am claustrophobic, I did AOK with the scan.

More soon.

Hairy thoughts

The body aches that usually accompany the week following chemo weren't as strong as usual. I'm attributing it to my water consumption. I am drinking between 2 and 3 liters a day. I thought I had been doing this all along, but taking note of every ounce seems to be helping.

Tomorrow is the big PET scan. It is the only PET scan (to my knowledge) that I will have during my treatment, and it could change the course of my treatment. Here are the three possible PET scan results (I'm making this up, so if you're an actual doctor reading this, feel free to roll your hairy eyeballs at my simplistic result scenarios .......... um alright .. you caught me .... I just wanted to use "hairy eyeballs" in a sentence. I thought it blended well.)

• Worst case scenario is that the cancer is not responding to the chemo. Dr. Kari would change the chemo drugs, and buy herself a trip to the Cyclotron or Linear Accelerator or some source of radiation.
• The "not to good but better than the worst case" scenario is that the tumors have shrunk, but the PET still shows metabolic activity. It means the cancer is shrinking, but not as fast as we want it to. I would need radiation (which by the way, I'm beginning to think isn't so bad. I've read that my chance of recurrence decreases a few percentage points with radiation ... um ... liiiiiiiiiiiiiiiiiiiiiike that.)
• Best case and most likely case scenario is that the PET shows no metabolic activity ... zilch. I will then continue to do my 6 months of chemo and be done with Hodgkin's forever.

Anyhoot, let's move on to a crowd favorite -- HAIR WATCH. I continue to find squirrels (aka hair balls) in the shower, on the carpet, in my food, stuck to Brennan's pajamas, between my teeth ... but my head of hair still looks alright according to my loving husband (is that like asking your mom if you're special?) Personally, I think three quarters of it is gone, and I'm just on the verge of looking like a person with thinning hair. Eric and I are attending a wedding this Friday; I'm hoping it holds out until then. It tends to fall out a lot right after chemo which I have this Wednesday.... so we'll see. Send your hairy thoughts my way!

As for the moment - I am feeling great! A little nervous about tomorrow, but great none the less. I even stayed out until 2 o'clock in the morning on Friday with the girls .... yes yes ... lots of late night laughter! Who knew?

Chemo #4 - Not bad

I have now had 4 out of 12 chemo sessions. We're well on our way to getting healthy. During my last chemo, we scheduled my mid-term PET scan which will show whether or not there is still metabolic activity in my lymph nodes. If the PET scan shows no metabolic activity (which would be wonderful), it means that the chemo is doing exactly what it is supposed to do. The cancer is being eaten up (pacman style) by the superhuman chemo drugs. Though chemo works for most people, my physiology may not respond to the chemo (but we all know it will ... of course). Good thoughts, positive energy, prayer ... we'd love for the PET (scheduled for next Monday ... one week from today) to come back clean!

As for side effects from chemo #4, I'm doing well. They have been better than the last two chemos, and with some additional distraction this weekend and a wonderful friend/play date today, things have been going smoothly.

Skiing

Today was chemo #4 (aka - the second chemo treatment in cycle #2). It wasn't eventful accept that Eric, our infusion nurse and I had a great time. I chose to have my infusion in the chair instead of the hospital bed; Eric therefore had a wonderful time (joking all the way) sprawling out on the hospital bed - shoes off, hands behind the head ... He thought he would wake up with an ABVD treatment only he called it ABDM or something of the sort.... wrong chemo pal. It was super fun. So since there isn't a ton to tell you about today, I thought I'd take you on a ski trip (I'm trying desperately to use a metaphor for my lymphoma journey ... hearing that metaphors are good writing and all ... dude. Try to bare with me. )

1. THE BUNNY HILL - I had such a wonderful 4 days leading up to this treatment (I felt like myself --- great!) that I struggled to WANT to go to chemo today. At such a point my choices are clear. Option 1: Don't have chemo. Hodgkin's Lymphoma is a fast growing cancer which makes chemotherapy effective as chemo attacks fast growing cells. It is easy (easy is of course the wrong word) for the drugs to spot the fast-growing cancer cells of Hodgkin's from the normal cells and to kill them. On the other hand, a fast-growing cancer without treatment would kill someone within a year (now that's a total load of you know what. I read it "somewhere" but have no idea where and I can't re find the data online. However, I do know my uncle died fairly quickly in 1956.) Option 2 - Have Chemo. I chose option 2 obviously. Is anyone singing the Jon Bon Jovi song Dead or Alive? "I'm wanted ... WANTED ... Dead of A ....live." yes yes.. it's too much. I digress. This Bunny Hill is too easy... let's move on.

2. THE BLUE SQUARE (a step up from the bunny hill; it can get steep at times) - We already chose to go to chemo (You could also think of it as choosing to not get hit by the bus barrelling our way while walking to work.... same same) What's next? Next, is not just wanting to live, but showing our body how much we want to live. Is there anything else we can do for our own health? For example, did you get an annual exam this year? Have you gone to the Dentist lately? Are you eating 5 servings of fruit and veg every day? The questions I've been asking myself is what else can I do to ensure a long life. Basically, the answer is that I can't ensure anything, but there are a few things I can do to help make me feel as though I have a little control over my fate(though not a lot of control) I can try to take care of my health by eating great, excercising, and keeping my sanity through meditation, family, friends, and community.

First, eating. I've always wanted to know how to make the glop they eat on the movie The Matrix. They describe it as the perfect food with the perfect number of nutrients. It sure would take all the guesswork out of meal time. I've thought about and talked to my health care team about Juicing and the Budwig Diet (cottage cheese and flax seed oil). These two diets are the closest I've seen to the glop from the Matrix. It turns out that some parts of these practices can interfere with an immune-system specific cancer like lymphoma. The research and my health care professions are telling me steer clear from the Budwig Diet, but I can juice any cooked or peeled vegetable. Any other vegetable could bring bacteria with it and cause more harm than good. In addition to juicing, I am going to make sure the rest of my diet is basically as perfect as possible. No granulated sugar, lots of fruits and vegetables, lots of warm foods (this is a Chinese recommendation regarding cancer) whole grains, nuts, bean, lentils, a large variety of healthy food of all colors etc etc ... and although controversial .. I'm eating all organic. (Side note: I've talked to several Hodgkin's patients who are doing or have done a variety of things to conquer the blue diamond ski slope. Some are exercising more, some have chosen the best oncologist in the US and are traveling to see him, some are vegan/vegetarian, some are taking more herbs, some are eating normally - whatever that means for them. There are as many ways to feel like we've conquered the blue diamond ski slope as there are patients. )

The rest of the ways I've thought about controlling the outcome of my encounter with lymphoma is meditation/prayer, family /friend and community. During meditation, I've been telling my body how much I want to live and why I want to live (sounds hokey, but hey... it can't hurt ... just don't expect me to talk to my cells in front of you! If you can tell me whether they respond better to emails, VMs, SMS text, or google messenger, I'd appreciate the tip) In other words, After the weeds are pulled by the chemo (aka cancer cells), I'm trying to fertilize the healthy cells in my body by talking to them and letting them know that I want to live.

Family/friends/community is still a work in progress. Basically, it's me being overwhelmed by the onslaught of amazing people in our world. I am being cradled and loved by the community around me and I'm just sucking it in and enjoying it. Good family and friends sure do put me in the right frame of mind to fight cancer. (I will learn from this and change who I am ... it's already starting, but for now, I'm absorbing and learning to accept my community's generosity.)

In summary, we're talking about Mohammad saying "Pray to Allah, but tie your horse." I want to help god and my heath care professionals fight lymphoma by tying my horse. To do this, I am eating certain foods, surrounding myself with loving people, and staying in the right frame of mind.

3. DOUBLE BLACK DIAMOND - (Hardest hill on the mountain. I always go down the double blacks but I never look pretty doing it.) Once I've chosen to take action by going to chemo, then I do whatever I can do to stay in the right frame of mind, to feed my body the best nutrients possible and to make sure my body knows how much I want to live, and last but most importantly, I "Let go and Let god." It's out of my control at this point. The prayer I say (or try to say) is that the universe has the final say and it "knows" a lot more than I do. My job is to get out of the way, believe in the next step whatever that step is, and be gracious ... whatever the outcome. Like I said --- it's a double black diamond, but I'm so stoked (ecstatic) to be able to point my skies down it ... it's usually quite a trip.

Sunny weekend pics

Here are the photos from the beautiful weekend in Chicago. yes yes... the first is Bren and I skating together on the ice .... safely skating .... (sorry Grandmas for putting your Grandson's life on two skinny blades). Notice how happy Brennan is in all of the pictures.

Pic 2 - Bren at the skating rink
Pic 3 - Bren and Eric
Pic 4 and 5 - Bren and I are actually sledding down a sledding hill on his (yes I said his) sled. It was tight.

I can't explain how good it feels to feel good. I have a permanent (momentarily permanent ... um ... ) smile and I'm trying not to think about Wednesday.

1/4th of the way done

I wanted to write quickly to say that this has been a wonderful weekend in Chicago - blue skys, high (relative of course) temps, and huge smiles on Chicagoans' faces. I have had two days of feeling phenomenal (the body aches continued through Thursday last week, but are completely gone now); what a wonderful weekend. Eric, Bren and I have some pics to share with you; I'll try to post them tomorrow.

I haven't mentioned yet that as of Tuesday I am one fourth of the way done with chemo? ummm... yeah. I'm kinda excited, but I'm more excited by my birthday on Thursday. Why so excited about a birthday (not a typical kari-reaction to birthdays) ..... well this birthday I am turning 33. Does anyone remember the significance of the number 33? It was my patient number at my second surgery in December .... yes yes .... IT'S MY LUCKY NUMBER! This year is going to be the best year ever .... well maybe just a lucky year with lots of clean PET scans.

Chemo #3 continued ...

I was happy to feel good on Friday. There is no doubt of that if you read my last blog; I'm downright giddy. The mouth pain did begin yesterday, but it doesn't seem to be as bothersome as it was during chemo #2. Perhaps this is because I sucked on ice during a portion of the chemo treatment. The medical staff has told me that ice has been proven ineffective, but too many laypeople have encouraged sucking on ice during treatment for me not to try it. I did discover it's hard to talk to my oncologist with large chunks of ice in my mouth, and it's hard to tell him to come back later when he told me not to chew on ice (and has the research to prove its ineffectiveness). Whatever dude.... proof schmroof.

Body aches started today. (According to the nurse, these body aches are only experienced by 15-20% of ABVD patients - completely useless information.) They are about the same as they were for chemo #2.

The biggest change between chemo #2 and chemo #3 is the hair loss. So far, it has been similar to post-pregnancy hair loss. For those who don't know, about six weeks after giving birth you lose quite a bit of hair. Soooooo ... I took a picture of the squirrel left behind after my shower ... and the possum in the sink after brushing my teeth ....... and Brennan and I posing with a runaway hamster... how are all those Superbowl hot wings feeling now?

How you ask... how did this post get past my managerial team (aka Eric)? He's sleeping at the moment; we'll see what happens tomorrow.

Friday!

I still feel like myself. I still feel like myself. Not an ailment to report. Not one. I still feel like myself. (I'm in disbelief ... crazy wonderful ... I'll take it.)

Lake Shore finally reopened yesterday. I believe 900 cars were stuck on the Drive during the blizzard. Can you imagine? After hearing about the 25 foot waves and the horrible storm for over a week prior to it's arrival, I would have been scared sitting in my car on Lake Shore during this historic blizzard. My heart goes out to those who were there.

The Snowbowl is tomorrow. This is Eric's football league's final hoooooo-rah. They play football in the very deep snow which hasn't even thought about melting away, and then they have a cookout (also in the very deep snow). You would think that no one would show up, but all the crazies do. Yes yes ... I called you crazy! You know who you are! I just hope no one shows up in shorts .... again.

Eric and I had dinner at our neighbors yesterday. It was wonderful company, and Brennan loved having three kids to play with (even though they were much taller than him). He is walking everywhere these days, and still cuter than Eric and I put together (seems impossible I know).

So this is life .... awesomely boring!

Oh I also wanted to throw out this question - GRANULATED SUGAR and CANCER ... do they mix? I'm sure the answer is in moderation, but if anyone has any studies, or thoughts ... I'd be grateful.

Chemo #3 Cycle #2

I'm not sure if it was the second or third largest snow fall in Chicago history, but 70 mile per hour winds and 20 inches of snow made for quite a sight. And Kari you ask, where were you during this historic blizzard? Why .... on my way to chemo #3 of course! The blizzard started at 3:00 yesterday, and was wild last night. There was high winds, lots of lightening and some thunder. The blizzard was meant to end at 3:00 today, but it really petered out around noon. My chemo appointment was at 1:00. We were planning on taking the car, but with Lake Shore Drive completely closed down and unplowed streets impassable, we (last minute) chose to take the red line (the "el" or train) and walk the mile to the hospital.

Side note: I left the house in boots, snow pants, down long coat, hat, and thick gloves. Eric wore tennis shoes, cargo pants and a jacket. He did have a hat on. To my chagrin, he really had no problem at all navigating the snow as someone had snowplowed a trail the entire 1/4 mile to the train stop. Eric thinks it was the city who also cleared the library, but I think it was a good samaritan ... (I've seen so many during this storm).

It only took us 45 minutes to the get downtown to chemo, and was uneventful accept for the scenery. Above are some photos of the day.

1st pic - Eric and I on the el.

2nd and 3rd pics - Views from the el.

4th pic - Eric in the middle of a typically busy intersection outside the hospital

5th pic - Me receiving chemo - it's really not very eventful. My sister-in-law was actually in town and also made the trek in the aftermath of the historic blizzard to come be a part of chemo with us. It was absolutely wonderful to see her; what a treat!