Tuesday, February 28, 2012

Round 3

Funny, I just typed that title and it made me think of a boxing match.  That is kind of how these chemo treatments feel.  You step up into the ring and fight, instead of a physical opponent though, you are battling the chemo.  You just don't know what to expect, will you get knocked out or just beat up?
 Of course in our case the chemo is supposed to be saving Dave's life, so I guess it's not the best analogy, but you get the idea.

Here is a photo of some very expensive drugs, they look just like water.  It still amazes me that someone was able to come up with this concoction.  My niece (the one with breast cancer) recommended a book to me after reading one of my earlier blogs.  It is a Pulitzer Prize winner called The Emperor of all Maladies, A Biography of Cancer by Siddhartha Mukherjee.  It is a very easy read and really informative.  It is a history of cancer, but also of chemo.  It made me very thankful for smart and persistant doctors and researchers (and the test subjects!).

This next picture is Dave walking with his IV pole.  This is the room lined with awful green recliners.  I was actually trying to get a picture of Barbie (the gal that did our chemo teach, her name isn't Barbie it's my nickname for her, but I hesitate to use her real name since I've kind of made fun of her in the past!)

We've come to love this nurse and actually like it when she is there, the friendly banter makes this time bearable, actually I'll say enjoyable.

She asked who his nurse was and someone answered Dave by saying, "You are Teri's today" to which my husband replied, "Better be careful my wife is sitting right here."  Without a hesitation Barbie says, "She is probably grateful for a reprieve!"  It was so quick and said so seriously that we all cracked up.

Anyway, besides the laughs it was quite uneventful.  They did reduce the 5FU by 20% to try to cut back on the pain in Dave's stoma.  This is the drug that is in his pump he is wearing for 48 hours.  So far he is tired, sensitive to cold (to the touch and taste), and it hurts to eat.  He still has constant pain, but factors that in as his new normal.

I did see a friend Bob in one of the green recliners (Hi Bob!)  It's a little strange, he looks so good (and is fine, Praise God), he seemed out of context, like a seeing a Caribou in Bora Bora (I don't know, it's the first thing that popped in my head and it's late).  Cancer just doesn't look the same on any two people.  Bob looked like he could have been sitting in Starbucks waiting for a friend (except for the tubing from his body to the IV pole...that would have been weird in Starbucks).

It just made me realize I have a new respect for cancer survivors.  I feel like I'm in the company of someone pretty special that has endured the roller coaster ride of emotions and countless treatments.  I'm really proud of Dave and any of you that now have "Cancer Survivor" on your life resume.

So we made it through Round 3, the bell rang and we are out of the ring until March 13 for Round 4.  I'm thinking the real test though is how we do in this in between time.  I'll keep you updated!

Sunday, February 26, 2012

How is Dave?

People keep asking how Dave is doing.  This is a hard question to answer, especially if the response needs to be quick.  I want to say "fine" but that really isn't accurate.  I sometimes wish I had flash cards with facial emotions.  If he was having a good day, I could pull out the smiley face.  If it was a rough night, I could pull out a drowsy, pain-ridden face.  I guess this is hard for me to answer also since I am not the one experiencing the side effects from chemo. 

Dave has been reading some writings from a friend, they are the "laugh out loud" type and they have been a great distraction for Dave.  He read me one a couple nights ago, we were laughing.  Then Dave's jovial mood shifted and in all seriousness he said, "This part is really important, I want you to hear this."  This is what he read:

(a little background, this is in the context of explaining migrains)
"When you tell people you have a headache, keep in mind they likely won’t have any sympathy. Their experience tells them that a headache is a trivial annoyance that goes away with an aspirin. They don’t understand that the ordeal is more akin to having to give live birth to a hippo…out of your eyeballs."

After I was able to relax my eyes from squeezing them tightly shut, Dave explained.  He actually apologized.  He said he often gets frustrated when he tries to explain his pain to me because he knows I don't get it.  This quote (albeit, a little vivid) helped him realize, it's not that I don't get it, it's that I can't get it.  I think it was a relief to both of us.  He can appreciate that I can't fully comprehend and I don't need to feel frustrated in my lack of understanding.

So in my limited understanding this is how Dave has been.  For about the first week after chemo he experiences signs of neuropothy.  His fingers and throat are extremely sensitive to cold, he needs to drink room temperature liquids.  He has dry mouth, though it seems like Bioteen is curbing that irritation.  In general he feels "off", he has some kind of pain just about 24/7.  The one that seems to be the worst though is the burning in his stoma.  (This is his guts coming out of the side of his body into a bag - lovely discription don't you think?)  It especially burns after eating.  He also is generally tired and needs to take frequent breaks. 

He still works everyday, does dishes, laundry and some other chores.  His diet is still restricted to low-fiber (white flour, no fresh veggies, limited fruit).  The doctor said he could introduce more foods, but he is nervous since it is so painful.

Tomorrow morning Dave goes in to get his port accessed and for them to draw blood to make sure he is healthy enough to receive chemo.  Tuesday he goes in for four hours for his treatment then leaves the hospital with a pump attached to his port to receive chemo for the next 48 hours.

This will be round 3 of 8.  Dr. Senecal called him last week and after finding out about Dave's pain, decided to lower the dose of chemo so the side effects won't be as painful...hopefully this works.

So we continue to trust and and try not to be fearful, we rejoice even in our weepy moments and we are thankful in all circumstances.  Hoping you can do the same on your journey...we know we are not alone, thank you for joining us on this road.

Saturday, February 18, 2012

Friday Night at the Cactus Gulch

So Dave mustered (or is it mustard?) up all kinds of courage to get all gussied up and go to a Murder Mystery Baby Shower set during the 1800's in the Wild West.  (If you know the Johnson's you know this make perfect sense). 

I haven't done an update since we left chemo on Tuesday, it hit Dave a little harder this time.  Headache, nausea and vomiting were present this time.  Thanks to some good drugs we had a quick remedy to the vomiting.  The pain is steady and ever-present now, sometimes subtle and sometimes quite obvious to the passer-byer.  But dog gonnit, we were going to a party tonight!

Our friends had their 6th baby and how else would you celebrate than with a Murder Mystery Party?  Full costume and props were encouraged.  My name was Barb Dwyer, a widow who has survived four husbands and three children.  Dave was Doc Turit and handed out anti-depressants that looked a lot like tic tacs.  Marv Ellis, was murdered and we had to figure it out.  We stayed in character most of the night, it was actually really hard!


You have to admire Dave's tie, I made it from a shoe string and Julia's belt buckle!  (Hoaky, I know, but you work with what ya got!)  Of course for my costume I had a dear friend sew two skirts together, nicely done Judy Olson!  She had the brilliant idea of adding the red ribbon at the seam where the two skirts met.  I should have taken a close up because she did a great job and everyone complimented it! 

One of my favorite characters was Anita Mann, you were hysterical!  Especially since your man ended up being a woman.  Who knew.  It was so great to have a "non-cancer" night, though Dave couldn't eat anything.  (Even though the fabulous hostess offered to make a special meal - thank you Shari)  We had four kinds of chili, salads and fresh veggies.  We had fun and acted silly and Dave made it through the whole party! 

Here's to Pella Johnson, thank you for giving us another reason to celebrate.  You are one blessed girl with crazy, fun and godly parents and a host of friends that are already crazy about you.  And thank you Schocks for throwing one incredible party!

Tuesday, February 14, 2012

How We Spent Our Valentine's Day

Today is Valentine's Day...what emotions this day evokes!  I've seen all of them on facebook, from loving this most romantic day of the year to this is the worst day of the year and everything in between!  Dave had a scheduled chemo day today.  Of course I had to go with him, it's Valentine's Day!  I can't let my Valentine sit alone (with 14 other patients and families).  I brought stickers to decorate his IV so we could be festive (yes, that is festive for me!).

Chemo days aren't all that bad, I'm getting used to them (I'm a veteran, after all this is our second treatment).  There isn't additional pain during treatment, it just takes time.  I joke with him it's like a date, but I'm a little serious since we get to talk face to face!  Today's side effects weren't felt until he walked outside.  His hands instantly began to tingle.  This probably will last about 5 days and then go away.  (Of course our doctor told us today that at day 5 he could experience about 4 days of pain around his stoma - or his guts as we like to call them - then get a  couple day break before chemo starts again)

As I was driving home I started to think about spending Valentine's day at the hospital with my husband receiving chemo.  How strange.  Then I began to think about all that it took for him to be able to sit in that ugly green chair and receive his treatments.  (Bear with me, this is how my mind works).  I began to wonder about the researchers that developed this drug and wondered what their lives were like.  Did they work crazy hours, did they get disappointed after failed attempts, did they have loved ones with cancer?  Then I thought of the cost to do research and experiments and supplies, did some one's study get cancelled for lack of funds?  For a moment I just wanted a glance at all the work it took for my husband to receive a drug that will hopefully save his life.

It made me think of Elisha and his servant (2 Kings 6) when Elisha prayed that his servant could see that those that were with them were more than those that were with the enemy.  His eyes were opened to see the mountain was full of horses and chariots of fire.  I wanted a glimpse of all it took for us to be in this spot so my heart would swell with gratitude.  While I did not get the visual image, God filled my heart with gratitude anyway.  I became grateful for the unseen sacrifices.

In the same passage Elisha tells his servant, "Do not be afraid".  I giggle a little, because seriously?!  They are surrounded by bad guys that came in the night to seize them.  Do not be afraid?  Absolutely.  Though circumstances may (or may not) get worse, we do not need to fear.  Greater is He that is in us than he that is in the world.  Our God is greater than cancer and chemo treatments and side effects.  He is greater than the fears that I let enter my heart. 

And that's the point of Valentine's Day for me.  God loved us and sent His son, the ultimate sacrifice.  So whether you love, hate or are indifferent about today, it does not change that fact that you are the Lord's beloved.  And that is something to celebrate.

Friday, February 10, 2012

Thank you notes ~

So many of you have done such sweet things for us.  I have a list of Thank You notes to write, I've written about 12 in my head and now I can't remember if they made it to your mailbox or not!  So here is a generic thank you to any and all of you who have been so kind.  This is what I see:  
 

Sunday, February 5, 2012

Alien

So I just have to say, I finally felt Dave's port.  It was really weird.  My niece has a port and she said, "My nurses always try to tell me that my port looks awesome - I think it looks like I've got an alien trying to emerge out from under my skin..." and that about sums it up!  It is weird, but I said that already. 

No news today, I just loved that quote and can now appreciate it all the more.  Goodnight!

Saturday, February 4, 2012

Sunny Day ~

Wow, was today gorgeous or what?  Today I will not talk about Cancer (oops, just did...well, not anymore!).  The kids and I power cleaned through the house this morning.  Daniel was bribed, I mean rewarded (what is the difference anyway), with a penny or a dime after a task.  He did get a quarter for cleaning the bathroom, that was worth it.  Then I had to see the Sound.  We threw the scooters in the trunk and drove to Steilacoom.  At the first site of the crisp Olympic Mountains, I gasped (seriously) and exclaimed, "How beautiful!"  My pre-teen says, "Mom, you are over exaggerating" to which my pre pre-teen says "I know, right?"  Whose kids are these!  I said "NO, if anything I am underexaggerating!" 
Of course I had to call Kirstin, she appreciates these moments.  When I got off the phone my friend's daughter walks by with her friends and says, "you should call my mom".  So I did.  Soon after we were joined by the Edgren clan + 2.  It was a great afternoon visiting and soaking in the vitamin D. 

Thank you Lord for a good day. 

Thursday, February 2, 2012

Spoiled

So my two older sisters tell me I was spoiled growing up.  I was the "baby" of the family.  The "good" one.  Translated, that means I learned how to blame my older sister for all kinds of trouble and came out looking like roses myself.  An example they would give about me being spoiled was that our father had a rule, no car until you are in college.  Well, on my 16th birthday I got a brown Dodge Omni (and I was not in college then).  Of course I had to work to help pay for gas : ) (Family motto: no worky no eaty)

 
My sisters did reap some benefits of not being spoiled though.  They both have a high work ethic, they are very responsible, problem solvers, easily adapting to new situations and all around A+ girls!  (Of course I didn't realize this until I was an adult, I wasn't completely fond of them when I was younger.) 


All this to say that today I was SPOILED again!  (Though now my sisters would be happy about it)  My dear sweet friend asked if she could bring dinner, I agreed expecting a pan of something yummy and a bag of salad (that really would have made me happy!)  Instead we received two laundry baskets and one ice chest FULL of food, plus a dessert and various boxes of yummies Daniel carried down to the house!  I forgot all about those eclairs until I looked at this picture again.  This photo could not fit the homemade pasta and chicken dinner and some more frozen dinners. 
And here is the dessert, she told me the name of it in German and of course I can't pronounce or remember the name she said.  All I know is that it is Y U M M Y!  Yes, I had to taste it before dinner and yes those are Daniel's fingers quickly exciting the picture after taste testing the topping.  (I am really full right now by the way) 
The fun part of receiving this bounty was that my friend (my little spaghetti) really enjoyed doing this for us.  Really, really.  She was glowing!  It was so fun hearing the story behind some of these gifts and how her mom used to make this same homemade pasta five days a week.

Again I am overwhelmed at the goodness of the Lord expressed through my dear brothers and sisters in Christ.  I feel so undeserving, just as we all are undeserving to receive the love of Christ.  Yet He loves us, while we were still sinners, Christ died for us.  So I will enjoy this bounty and rest in the sweet reminder of how much God adores us.

Dave did okay today.  He is getting used to a new routine, he forgot one of his meds today and could not figure out why his stomach felt so weird.  As soon as he took it though, he felt better.  He cannot drink (or touch) cold liquids - for 5 days after chemo - and needs to try to drink 3 liters of room temperature or warmer beverages.  Hopefully he'll feel better tomorrow after they disconnect the pump from his port.

I hear Maui Caramacs calling to me, I better heed the call!  Goodnight and thank you so much my friend for your generous gift of love to us!  We are spoiled.

Wednesday, February 1, 2012

Chemo and A Hair Cut

I really can't take the credit for the great title to this post, my friend Debbie came up with it : )

Those two events (chemo and haircut) probably do go together often, however it was Dave that had the chemo and Julia got the hair cut!  I should back up.  On Tuesday the port was "installed" without any problems, it was a simple procedure and Dr. Klatt did a fantastic job.  We got there about 8:30am and were out by 2pm.  No super powers yet, but his port is called a Power Port, so we'll see.

Today we went in at 10am to begin chemo, they left his port "accessed" after surgery, meaning there are long tubes hanging out of Dave's chest.  It was really an uneventful appointment (which is a good thing in this case).  They gave him some hydration, then some steriods, then the chemo.  It took about 3 hours.  The nurse hooked up a pump with a bag of chemo, stuck it in a fanny pack and sent us home.  Dave will have this "drip" for 48 hours, go back and have it taken off (plus the tubes so nothing will be sticking out of his chest for 10 days).  So about every 2 minutes we hear a "zzzzizzz" and that is 3cc's of chemo being pumped into Dave's veins.  He still isn't feeling well from the surgery in December and now it's just no fun receiving chemo.  But as my friend Moni said, the days are getting longer, the sun is shining more often and soon the flowers will be pushing up through the soil.  We are ready for spring (literally and figuratively).  We are ready to move on to the next season of our lives, yet to everything there is a season and we are in the season of recovery and healing, we were told today that Dave will not feel quite himself for a year after chemo ends.

So we wait.  But waiting is not a lack of activity I've learned.  We can be active in our waiting.  So we decided to get bangs.  Well, Julia got  bangs.  I freaked out twice.  First because I had the same haircut when I was her age (she is way cuter though) and it felt like I had gone back in time and was looking in a mirror.  Freaky.  And second because I think she looks two years older than she is.  I tried to send her back in and have Krista make her look younger...but alas, it wasn't going to happen.

So here are the two pictures of the day, chemo and a haircut.  Notice how Dave's chair matches the wall, and the curtains, and the cove base and everything else in the room?!




And notice how beautiful our daughter is, and did you know she is even more beautiful inside?



The nurse also told us today that the chemo has a cumulative effect.  It stays with you a long time, so toward the end of treatment Dave will be experiencing increased fatigue, or nausea or whatever his symptoms may be.  We are praying he weathers this little storm well.  I know he can do it!