The joys of being a toddler

I haven't gone back to work yet, and would prefer not to because frankly, I love my toddler and can't part with him for a moment.  So there I am in my bosses office on Thursday .... with toddler of course (see previous sentence)... explaining my situation.  In the 20 minute meeting, Brennan pulled my badge and let go about 20 times making it spring back at me, knocked over the pens, called several people on the phone, hit numerous buttons on the phone and basically broke it, was nearly knocked over when the company SVP walked into the office, and turned the light on and off many times.  The meeting went well and Brennan got to spread his happiness at work.  He's the best!

The Dentist

Today, I am excited to report that I went to the dentist.  I wasn't allowed to go to the dentist during chemo because one of the possible side effects of the chemo was poor blood clotting; I wasn't allowed to bleed on purpose.  In addition to having my teeth cleaned, I also had my front tooth sanded down.  I had chipped it the same month I was diagnosed with cancer.  (I think I still have some of the sand paper in my mouth... are they suppose to use that stuff?)

The house is moving right along.  It needed some TLC, so we're giving it the love before we move in.  House decision-making is interesting.  Questions like - how can we cheaply fix [enter myriad of general housing problems] and still have a house requiring the least amount of repair for the next few decades.  As many of you know, I'm a product of the depression, so I'm super cheap (I'm older than I look).  Eric is very good at being cheap too.  We both have clothes from high school ... they fit nicely next to each other in the closet.  I've always wondered how people can afford this season's hot new item ... but then again, I do have parachute pants ... somewhere.  Perhaps we should clean before we move.... i digress.

Home repair is well ... stressful, but not very stressful.  I once heard that home renovation is worse than med school, but so far, home repair is about as bad as flossing.  I just jinxed us ... didn't I?  Perhaps we owe our restful nights to our cruise-y contractor who ... well ... must have been an Australian surfer in a past life.  Back when I was traveling, one of my favorite lines came from a full-time snowboarder at Whistler who mid-afternoon proclaimed "there's a lot of day left" and then he proceeded to talk about whether he should "invent hacky-sack gloves" so your hands don't get cold while you're kicking the hacky-sack ball with your foot.  I digress ... again. Anyway, here's a shout out to George our contractor and friend.

There's a lot of night left, but I'm still going to catch some zzzzz's.

Oh yeah.... no one used sand paper ... really.

Ahhh summer

My hair is growing and growing.  I now have a head of short hair .... and as an added bonus, I still have the few long hairs that didn't fall out during chemo.  I haven't told Eric, but I cut those long hairs tonight.  Usually cutting several inches of hair is a big deal, but when you're only cutting a few hairs, it doesn't seem like a big deal.  So, now my hair is getting closer to being all one length.  (I still haven't looked in a mirror since I cut my hair; hmmm ... odd.)

Eric and I had an improptu gathering with our neighbors tonight.  We ordered pizza and all eight kids played together; Brennan was well taken care of.  Here's to kids running up and down the sidewalk playing ghost in the graveyard in the middle of Chicago after dark!  What a perfect midwestern summer night.

The world post chemo

I've heard on several occasions that the time immediately following chemo can be difficult.  Difficult to go back to work.  Difficult to continue to have post-chemo ailments that can't be seen. Difficult to figure out what life looks like post cancer.  So difficult that I've heard reports of people having post-chemo depression. I'm going to get right on that depression as soon as there's enough room in my head to feel anything more than pure joy that I don't feel like ... pardon me ..... crap! 

These reports of depression have actually puzzled me for the past couple months.  The benefit of having cancer is to be able to live like you were dying. Isn't it?  (um ... come on guys ... that's a reference to a county song)  You now have permission to take risks and make sweeping changes.  Not like cleaning out your closet (I've always wanted to "want" to do that), but more like selling your house and taking a boat to Fiji.  Alright alright ... I know... I just want an excuse to travel.

What I'm *starting* to understand is that the last eight (yes eight) months was difficult ... perhaps you could even say traumatic.  The PFT or Pulmonary Function Tests alone (those are the phone booth tests where you breath into a tube while in a small enclosure.  Easy for 99% of the planet, but my .... worst nightmare.  No no... I wouldn't exaggerate.) are the definition of traumatic.  They should at least label them accurately -- the FTN would be much more to the point -- the Find a Therapist Now Test.  Then there was the root canal of the back (aka - the bone marrow test), two surgeries, several CTs and PET scans, and a whole bunch of chemo.  oh yeah ... the hair loss.  and last but not least... the looming cloud that the cancer could come back. 

When the time came to choose (yes choose) to go through the battery of testing and chemo, I just did it.  My body pumped itself up and off we went.  But, looking back, I keep thinking .... WHAT!#%$!  ...that was nuts. 

So... to sum this blog entry up:
1. Post-chemo can be difficult
2. My head is too small to contain anything other than the joy of not feeling like poop.
3. PFT tests (aka. FTN tests) suck.

New hair growth

If you remember, prior to the end of chemo I was told that new hair growth would begin about a month post treatment.  Well, treatment ended on June 8th.  Today is July 9th.  Ummmm... where's the hair people.  No hair growth. none. zero. zilch. 

And to add insult to injury, the squirrels in the shower aren't getting any smaller either. 

I go back to the hospital for blood work on Wednesday.  They want to make sure that my blood work has recovered.  I also need to have my port flushed.  I think my port has to be flushed every 4 to 6 weeks... or something like that.  I'm not looking forward to the saline taste in my month.  You have no idea how awful awful awful it tastes.  ugh. 

I am still sensitive to some foods .... popcorn and lemon are the two main ones.  Popcorn ... oh beloved popcorn ... why have you turned on me?

A very expensive lotto ticket

Introducing the soon-to-be, new-to-us chateau Robbins! 

Now you know what I've been doing for the past months.  It was tough not to blog about the house, but it's difficult to play hardball with the seller if he reads my deepest, darkest secrets online.  Basically, I was scared I would mess things up.

Stress is an interesting topic post cancer.  A few months ago, Eric and I asked ourselves whether or not my body could handle the stress of buying a home, selling a home, and especially, fixing a home that's over a hundred years old.  In the end, I decided that I didn't want to change my life because of cancer.  I certainly didn't want to live in fear of the cancer coming back.  So, as I did five years ago when purchasing the condo Eric and I currently live in, I asked myself where I want to be in 5 or 10 years.  Now five years ago I was single; I wanted to find Eric and start a family.  I'm not saying "If you build it, they will come," but I bought the house and Eric arrived within the month.  Cliche but true ... and since it worked the first time ...

Five to ten years from today, Eric and I (ideally) want a big family (four kids would be fine thank you), and a good community.  I think if we shove them in long-ways, this house can fit a few more children than our basement condo!

It does feel odd to want perfection when I just finished my last chemo treatment, but hey, if I don't buy the lotto ticket, I'm guaranteed to never win the lotto.  A week from today, Eric and I are buying a very expensive lotto ticket.

Hello!  I'm sorry that it's taken me so long to write. 

I do have some things to tell you about!  Last night, Eric and I were playing soccer at a nearby park with Brennan and four friends.  While I was taking a breather, our five-year-old friend came over and took my hat off.  Her reaction was priceless; she took one look at my beyond-thinning hair and said, "Whoe - I wasn't expecting that." HILARIOUS!  I think she has successfully summed up my current hair status.  What I wasn't thinking about at the beginning of this journey was how long my hair would be crappy post-treatments; I suppose there were a few others things to think about.   Luckily, I like hats.

Brennan and I walked to the beach the last two days in a row.  The beaches here in Chicago can be quite stunning.  My point is twofold.

1. The beach we walked to is 2.5 miles round trip and it has been humid.  What are you talking about Kari?  My lungs... my lungs are slowly feeling better.  There have been a few humid days where I had to find airconditioning and sit down to catch my breath, but I hope those days are over.  It's really quite odd not being able to breathe normally.  When I was in my early 20s, I had a few months of panic attacks.  Panic attacks are typically related to a fear of death; mine were specifically triggered by the fear of death via suffocation.  The Universe has a wicked sense of humor altering my ability to breath, or perhaps they just know how to make a woman stronger.  Luckily no panic attacks .... just fun with breathing exercises.  aka. blowing up brennan's pool.  I think it may have helped .. and no don't bring your children's blow-up toys here for me to blow up.  As for what it feels like to have crappy lungs - it just feels like my lungs won't inflate all the way. 

2. Remember I had two points ... yeah ... no clue what the second is.  Perhaps, I do have a little chemo brain.  Supposedly, people in chemo who are a bit cloudy during and after treatment are said to have chemo brain.   I don't know about you, but when I think of chemo brain, I think of poison killing my brain cells ... ah well ... In "Dumb and Dumber" no one knows which of the two stars is dumb and which is dumber (or do they?).

Other things that have happened recently (remember no salad during most of chemo due to low white blood cell count and the risk of infection):
I ate a salad!!!!
I ate celery!!!!
I ate celery in a salad!!!!
I started juicing vegetables.
I ate pears
I ate plums
I ate mangos
I ate raw beans (just because I could).
I ate blueberries.
I ate strawberries.
I ate bok choy in a salad (it's not very good).
I had the runs (too much info .. and not true ... but funny ................................um yeah.)

More again soon.  I have more to tell you...

Update

I just wanted to write quickly to say that all is well on the Robbins' home front.  I'll write more soon, but here's the quick update:

Side Effects were a little worse than usually this last chemo.  A little more fatigue and a little more of that wonderful "ick" feeling as my fellow Hodgkin patients online have labeled it.  Right before chemo #11 the nurse gave me a new med, Compazine.  It is a good drug.  Basically, it takes away the nausea and knocks me out.  Sometimes, when you just don't want the "ick" feeling anymore, sleeping through it works really well.  Luckily, my folks were here and Brennan was well cared for while I took daily four hour naps from Thursday to Sunday. 

Now, I can feel the last remnants of the body aches.  Brennan just woke up; more soon!

Chemo number 12 -- check

ahhhhh.... I am done with chemo!  Today was the very last session.  I of course am tired and probably won't sleep a lot tonight thanks to the steroids, but once again I am feeling well.  I can't jinx us by saying that we made it to the end of chemo because of course there are a few more days of side effects, but I certainly feel like this is a small milestone (I have an array of STUNNING roses in my living room to prove it)!  We'll have our first post-chemo scan in early to mid August.  I've been praying for us every day, and I can feel all of your prayers as well. Once again, it is very important for the first scan to be clean. Whatever is planned for me in the future, it is good.  I know it.

I am also hoping that the shortness of breath and chest tightness from my lungs will heal quickly.  I can't wait to go for a run!  It may be another couple months, but I can picture me with my blistering pace running around Loyola university and perhaps stopping into their warm and inviting church on the lake.  Or perhaps I'll take Brennan with me in our running stroller and head down lakeshore drive; we could even jump in the water to cool us off (no swimming during chemo, but I will be cleared for swimming in another month).  Whatever we choose we may be able to run for a whooping 10 minutes; hmmmm ... we're not going to go very far ... are we?

During our chemo yesterday, we did not have our usual infusion nurse.  Typically we have Celia and yesterday we had Mary.  Nothing against Mary, but Celia is our peeps; she's family whether she wants to be or not.  For the past 12 sessions of chemo, Celia, Eric and I have had a rip roaring time.  I know, it doesn't seem possible, but it is.  The drugs made me loopy and talkative and Celia and Eric were equally able to take my ramblings and run with them.  At the beginning of the journey, I heard that you should be yourself during your chemo sessions.  Instead of wearing cancer on your face or in your attitude, be YOU!  I worked hard at this.  For his part, Eric always brought his Tigger attitude (happy, happy, happy - I love that about him), and I was able to have a very positive picture of the chemo drugs (I looked at them as pacman eating up the cancer and sparing the needed normal cells; I did not picture the chemo as poison.), and Celia always walked in with a smile on her face, lots of knowledge, more than a willingness to help, and best of all she brought her great sense of humor that matched Eric and I perfectly.   Oddly, I m going to miss the time we enjoyed during chemo sessions (though not the chemo itself), and I'm not kidding.  Here's to Celia!!!!!!!

I will continue to write often as you all have taught me to love it!!!!  It's taken 32 years to put pen to paper without a grimace, and I would like to thank you all for encouraging me!  Of course you're probably just as happy to be able to stop reading this blog as I am to finish chemo, but not so fast. We still have to go through post cancer; I have heard that it can have pitfalls.  We have quarterly scans, a gorgeous new mullet that will begin to grow in a few weeks, hospital bills to navigate, we have blood work to find out whether we're part of the 80% post-chemo patients that are able to get pregnant or the other group who can't, we have traveling, running, to-work-or-not-to-work discussions ... OK I'm overwhelmed.  Maybe I'll just keep writing instead.

About my hair, I've taken a survey.  My hair has started to look like feathers; it's too long and thin and no longer looks good.  It's time to cut it ... not off.  I'd like people to be able to see hair under my hat, so that's the goal.  We'll see if I can muster up the courage to have it cut, or perhaps just do it myself.  Maybe Logan should come over and cut it (for those who don't know; I have a cousin-in-law who is very good at home remedies.  His home remedies usually involve teeth, but I digress.)  I, with my social anxiety (yes yes ... Kari has always been prone to social anxiety .... I try to ignore it most of the time.) do not want to walk into my large and glamorous haircuttery with my feathers.  How do you tell a hair stylist that she can't pull on your hair or shampoo it.  I have heard of stylists being overwhelmed by cancer patients, and I'm thinking about trying to warn her before I arrive.  In fact, I'm going to do that.  I need to give her a chance; I might just be surprised.

Bills are an interesting topic as well, or perhaps just a buzz kill.  We have 100s of statements for doctors and hospitals.  Two different billing offices at Northwestern, one of which has a website with your consolidated bill, one of which does not.  We have two insurance companies (my company switched the administrator from Blue Cross Minnesota to Blue Cross Anthem on January 1, 2011.)  The current insurance company denied two different claims from the Hospital.  Both because they didn't have the right diagnosis code; how many diagnosis codes does "cancer" have?  What's funny is that they couldn't tell me what service was provided on those dates.  They did however resubmit the $9,700 to the secondary diagnosis code and were hopeful that it would be covered.  I have figured out the bills for the surgeries and initial testing/chemo; those bills are done as dinner.  I am now waiting for the $9,700 to straighten itself out before paying the rest of the bills.  Luckily, I'm not only math capable, but I work in finance.  This is all very doable and I guarantee that I will be paying my deductible, plus out-of-pocket maximum, plus copays.... I will not be paying more or less.  But, what about everyone else.  It's making me increasingly anxious about the elderly's hospital bills.  If they don't have a son or daughter to help them, they could overpay.  To make things more complex, a stranger would not want someone like me (a volunteer) looking at their person information.  Perhaps the finance group at Northwesten will walk through their bills with them.  I think I'll ask the finance department that question.  Like I said at the beginning ... it's a buzz kill, but I would like to find a way to help. 

I forgot to infuse my funnybone between the words of the last paragraph ... can you say rewrite.  Alas, I don't have it in my.. I'm hungry.  Love to you all!  What a wonderful day!!  This day (well yesterday ... sleeping got in the way too) could mark the end of cancer and chemo in my life forever ... knock on wood!

Hair or lack there of

Here are some pics of my hair .. and I may have added a few pics of Brennan as well ... and the last pic is one I just now found; I've decided it's my favorite pic in the entire world, but I digress.  Back to my hair -- I am told it will start growing back about one month after my last treatment. (June 8th last treatment .. July 8th hair growth ... but who's keeping track.)  My friend and I decided yesterday that I will have my own personal version of the mullet.  A version that virtually no one will be able to recreate; it's like a buzz cut with a few scattered long strands of hair.  Perhaps we can think of it as a grassland with scattered trees, or a meadow with some scattered wild flowers.  Whatever you call, it has potential to be the worst hairdo you've ever seen.  Oh the anticipation is killing you ... I know it.

 

As my PET showed in March, the cancer is gone and it has been surprisingly absent from my thoughts as well; I am ready for chemo to be done.   My hair is so thin that I now exclusively wear a hat.  I catch myself in the mirror now and then and wonder how Eric and Brennan can still have such a crazy love for me.  But of course, they do.  Brennan continually takes my glasses and my hat off; both of which I wear to make me look more normal.  Bren just wants to see his Mom, or perhaps he's just a 1.5 year old who likes to play with and analyze everything within his reach (the first explanation sounded so beautiful, didn't it?)

I'm not sure my heart could be more full of joy; I'll spare you the details but I am incredibly grateful to my doctors, my family, my community ... you all ... you get the idea.  The perfect Chicago weather has something to do with this tidal wave of gratitude.  Weather plays such a predominant role in a Chicagoans life that when we finally emerge from hibernation, you can see the happiness spread across everyone's face like a thick princess pink frosting.  Chicago in the summer is unbeatable. As the saying goes - thank god for the awful Chicago winter, or everyone would want to live here.  I'm guessing you all would agree that the end of chemo and the beginning of the summer coincide nicely (whoo hooo! I feel like I've written that paragraph already on this blog .... hmmmm.... a false start to the Chicago summer perhaps had me fooled, but now the Chicago weather is going to be consistent until October ... I'm sure of it.)

Chemo #11 wasn't a cakewalk, but wasn't bad either.  The absence of Bleomycin from my chemotherapy regimen due to pulmonary issues didn't lessen the side effects.  I slept more than my past chemo sessions, I have blisters forming on my feet that are starting to annoy me, and I have pesky body aches.  To sum it all up, I'm really doing very well.  AND, I only have one session left.  One week from today, I will have completed 24 weeks of chemo (well 22 and then I'll have another week of side effects but who's counting). 

As chemo comes to an end, Eric and I are making normal, everyday life plans.  (I am however keeping in mind that the cancer could come back.  I don't think it will, but if it does, I want to have at least taken a good look down that path.)   Super, super cool (I'm not kidding) boring stuff (I love boring) like looking for a new car.  We have a 2000 Pontiac Grand Prix, and we have discovered that it will cost more to fix the air conditioning than the car is worth .... um yeah.  Buying things seems to be difficult for Eric and I; a car with air conditioning, furniture that isn't free, clothing that we didn't wear in college.... you get the idea.  Eric's hour commute to work in 90 degree heat may not kill him, but his mood after the trip may kill me.  (If you know of a good used car or van we could buy, please take pity and give us a shout.)  

Chemo #11

Chemo number 11 is done as a door nail (um does that make sense).  In my current state (drugged), I remind myself of the main character in the movie Almost Famous; he screams from the roof of a house, "I'm on drugs!" and then he jumps into a pool.  I don't think I'll jump, but the Ativan, Emend, Zofron, and steroid make me loopy and, according to my nurse and husband, entertaining as well.  Truthfully, I just think it makes it difficult for me to write coherent sentences, but I'll try.

Does a dry cough mean anything?  Could it possible mean that I have a rare side effect of the chemo called  Bleomycin Pulmonary Toxicity? Three weeks ago, I was on Levequin (strong antibiotic) for a couple weeks for a cold and after the cold (wet cough, green snot, yellow nasal drip ... you get the idea) came a dry cough.  It really is just a small tickle in my throat.  So many of us experience persistent dry coughs after we are sick (am I right??) that it hardly seems like something to worry about, let alone change my chemo regimen over. 
The doc sent me for a variety of tests to see if the dry cough actually meant something. 
Test 1: Chest Xray - This are easy easy.  You stand with a gown on, and the technician takes two xray pics of your chest.  Easy. 2 minute easy.
Test 2: CT Scan of the Lungs - Typically in a CT scan one must drink Barium (nasty ground up chalk with fake flavoring) as a contrast material.  The Barium allows the radiologist to decipher between different parts of our body.  I didn't need this contrast for the Lung CT which made it easier than usually.  I laid down on the table, and as they slid me multiple times under the scanner they told me to breathe in and hold, out and hold, in and hold, out and hold, in and hold ..... you get the idea.  It took about 10 minutes and was fairly easy.
Test 3: Pulmonary Function Test - Kill-Lord-Voldomort difficult (Harry's been trying to do it for at least 6 years now ... we'll see what happens in the last Harry Potter movie this summer).  The Pulmonary Function Test (PFT) is a little slice of hell on earth.   This is the test where they put you in a small box and shut off your air supply.  I am scared of suffocation and this test is a nightmare.  I'd rather take my chances helping Harry kill Lord V.  ugh.  Last time I was allowed to do the PFT without the box, but I was encouraged to use the box this time because it is slightly more accurate. In spite of my fears, I was successful.  My heart would have lapped that good looking guy who won the Indy 500 ... no contest ... but in spite of myself, I completed the test in one try.  Oh no no no no... there's no need to cheer.... no no ... well ok ... ok... maybe a little louder... yeah I was great wasn't I? 

TEST RESULTS: XRay was clean, CT showed abnormalities, and PFT showed a decrease in lung function of 9% between last month and this month.  Though we can't be certain, the results indicate that I am having a reaction to the Bleomycin.  According to me, I need to take the Bleomycin as part of my chemo regimen to ensure that I have the 85% cure rate that everyone knows and loves. So my initial thought was to ask the doctor to give me the Bleomycin for my last two chemo session regardless of the decreased lung function.  ummm yeah ... wrong ... yet again.   I typed Pulmonary Lung Toxicity into Google and found via WedMD that lung toxicity and death are closely aligned.  In fact, if you have Bleomycin Pulmonary Toxicity (BPT), your chance of death within the next 5 years is 25% (many cases within one year) .... that doesn't include the additional possibility of dying from Hodgkin's.  So, I asked my doc about this and he said that the consequences are in fact dire and that BPT is taken very seriously.  Then he said - You Kari, DO NOT FIT into this dire 25%category.  He said it with conviction multiple times.  At this point, my toxicity is very minor (we caught it early).  However, if he continues to give me the Bleomycin, I could end up with an increased chance of death; the point is taken, don't mess with my lungs.

The last two chemos will be without the Bleomycin.  I asked the doc if he would give me additional chemo sessions after my 12 are complete, but he will not.  There is no need.  He did say that my 85% cure rate is still safe and pointed to a recent german study that found Bleomycin to be an unnecessary component of ABVD.  They'll have to run these new findings through more clinical trials before they see the light of day, but in the future, Bleo may be a thing of the past ..........  We'll see.

Wouldn't it be funny as heck if a young girl scared to death of suffocation died a worse fate than mere drowning (which used to be my most feared way to go ... right up there with torture anyway) ... she died of Lung Toxicity ... aka. a slow suffocation. He he he he... I can't stop laughing about it!!!! You have my full permission to laugh ... it's totally funny. Dark humor, but humor none the less.

In reality, I'm bummed, angry at times, tired of dealing with negative health news ... I have questioned my decision to not do radiation. It'll all swirling at the moment, and I hope for future clarity and peace with the situation. It's difficult to find this peace and clarity during the nausea and fatigue, but hopefully, I can work through it when I feel better starting next week.  I have been praying to Let go and Let God ... or specifically I've been praying the following prayer:

"God, I offer myself to Thee--to build with me and to do with me as Thou wilt. Relieve me of the bondage of self, that I may better do Thy will. Take away my difficulties, that victory over them may bear witness to those I would help of Thy Power, Thy Love, and Thy Way of life. May I do Thy will always!"

And finally, here are a couple pics from Chemo Number 10, and a bonus pic of Brennan's first Bball basket!  Soooo cute.  SIDE NOTE: I love that little miracle (aka Brennan), and I'm itching to expand our family one way or another.  We'll keep you posted.

Quick Update - Home Stretch (Eric Posting)

Eric here. Just wanted to make a quick update as we approach the home stretch of treatment. It's hard to believe but we have just two more chemo sessions, which means in 14 days we'll be done with chemo. Hurray!!

Kari has been an unbelievable trooper through this whole process, and her perseverance (and really grace) through it all has been inspiring. Our goal through these last weeks are to just stay in the game (it's been a bit of a slog these last few weeks), and face whatever lymphoma throws at us; which this week happens to be some pulmonary issues.

Yes, lymphoma hasn't stopped keeping the game interesting. About two weeks ago, after getting over a cold or flu Kari developed a dry hack. Not too distracting to us, but of considerable concern to our oncology team. And as we've deeply immersed ourselves in studying up on the presumptive diagnosis of Bleomycin Pulmonary Toxicity, which is lung damage associated with the "B" chemo agent in our ABVD regimen, we see that this scheduled 12 round bout is going to go the full distance.

Kari talked to our oncologist this week after getting another CT scan and a Pulmonary Function Test on Monday and Tuesday. Based on some loss in pulmonary capability and indications in the CT scan; he suspects it could be Bleomycin Pulmonary Toxicity, a serious condition which needs to be monitored closely. It's highly likely that the doctor will leave out the Bleomycin for the next (and last) two chemo sessions.

Although it's concerning to us, Dr. Gordon reassured us that given the 10 previous treatments with Bleomycin (plus the other agents in our chemo regimen), we likely will have no negative long-term repercussions from this change in treatment. He referred us to a study which supported his assertion making us feel a little bit better, but also begging the question, that if a study shows leaving out Bleomycin in treatment has no effect on outcome, why they prescribe it at all.

Overall, even this hurdle seems surmountable, leaving us license to start to think more about LAL (life after lymphoma), which is a very sweet thought. It's an odd thought too, as part of us craves a return to pre-Lymphoma "normalcy," but we know too life will never be the same; we've experienced too much, learned too much, grown too much, and been prayed over, cared for, and been loved to much to ever go back to that place (as nice as it was), and we'll have to forge our way in a world which is richer, deeper, and more appreciated in every banal simplicity than the one we left.

Now off to chemo session #11!!

Bren

Brennan woke up this morning at 6am which is way too early.  But, I knew that the weather was supposed to be warm today, so we stuck our noses out to see if it was warm enough to go outside.  To my pleasant surprise, it was not only warm, but it was short-sleeve weather (surprise - not all warm weather is short-sleeve weather ...). That might not mean much to those of us in warmer climates, but to a Chicagoan, the first few days of real spring weather are equivalent to a salad after six months of chemo.

Needless to say, we had a wonderful morning. Brennan watched a dog chase a tennis ball for fifteen minutes and then he crossed a jungle gym bridge by himself (big stuff in my little man's world). 

I think if you could actually squeeze the love out of me, I may drip forever; I love the darn kid so much. 

There's a book my mother-in-law gave to Eric and I before we had Brennan that talks about how warm and happy a baby is inside his mother's womb.  He has an angel with him that keeps him safe and answers all his questions.  Then one day he has the traumatic experience of birth.  It's no longer warm, no longer dark, and he can no longer see his angel.  He asks his angel - what's this all about? (probably not those words)  His angel says that he's in the bigger world and that over time he will start to find things in this bigger world that he likes.  She says that she'll always be around if he needs her, and when he's ready to leave this world, she'll come back to see him again.

In my mind Brennan and all tiny tots are as close to being perfect as humanly possible (unless we're enlightened and some people I believe are pretty close).  My goal is to help Brennan hold on to as much of that perfection as he can. 

He swatted at my face this morning.  Most of the time he does that because he likes checking out mamma's face, but today I think it was because he's seen other kids do it.  I kissed his hand and sent him on his way.     I realize that we're only at the beginning, and I can only hope that I'm worthy of such a daunting task.

Wedding #3?

We were invited to another wedding.  It is on June 4th - four days before my last chemo.  Let's take a look at the scorecard.

Wedding Number 1 - Had a great time! Got sick afterwards.  Took heavy duty antibiotics for one week.
Wedding Number 2 - Had a great time! Got sick afterwards.  I am currently taking heavy duty antibiotics for two weeks.  I have three days of antibiotics left and my cough has significantly lessened.

Weddings 2  || Kari 0

I love weddings!  Can I attend wedding number 3?  You be the judge.

Salads

Tomorrow is chemo #10 out of 12.  I have decided that I can cautiously ... very cautiously ... take a fleeting glance in the direction of the finish line. 

So Kari ... what super exciting adventure are you going to go on after chemo is finished?  ummmm.....the first thing I am going to do is eat a very large salad and a handful of blueberries ... perhaps several large salads.  It doesn't exactly sound celebratory and it is definitely not an exciting adventure, but after half a year of going without, I want a salad.  When that wears off (I hope it doesn't but who am I kidding), I'm going to go for a swim (another chemo taboo) and a manicure.  I can count the number of manicures I've had in my life on two hands but who doesn't love doing something forbidden?  Of course, I could do all of of this in a day ... so what's next?

When I sat down to write this blog, I certainly wasn't planning on such a weighty subject.  But heck, why not.

Through the eyes of cancer, I see more clearly.  I want to be the best person I can be, I want to maximize time with my family, and I want to make sure I spend my time wisely.  The goal is to remember that every moment counts today, tomorrow, and always.  The goal is to remember that money - though important to supply necessities (to all people) - is mostly unimportant.  The goal is to let go of how I am perceived by others (Not caring what other people think seems to be a welcomed side effect of cancer.)  Of course I am utterly incapable of achieving any of these goals all of the time.  I'm just hoping for the spiral effect.  Every once in awhile I may just take a step in the right direction and start circling on an elevated platform.  Every dog finds a bone eventually.

As far as the logistics are concerned - my last chemo session is on June 8th.  I think it is fitting that a friend of mine is expecting a baby on this date.  My white blood counts will increase over time; I think they are suppose to rebound in 1 to 2 months.  I will have follow-up blood work and a follow-up PET scan 6 weeks post chemo ... around July 20th.  That PET scan is very important.  If it's clean, we are going to party ... literally in our backyard ... you're all invited.  It will be followed up by some type of testing every 3 months for the next 2-3 years.  If I'm clean after 3 years, I will most likely never have Hodgkin's again.  If the first PET scan or any subsequent testing is not clean, then it's on to radiation and a stem cell transplant.  I'll take scenario number 1 please.

Just to come full circle (a lot of circling in this blog), I have three more chemo treatments to go and one month left.  Ahhhhh..

The curly slide

I was beat on Tuesday.  After the wedding my minor cold turned into a cold with a cough and then a cough and a drippy nose.  I started Levaquin (an antibiotic) on Saturday, but it didn't kick in the way it did when I had my first cold (which I caught after the first wedding we attended; note to self ... no more weddings during chemo).  I called the nurse on Monday; she thought the meds just needed a few more days.  On Tuesday, I struggled to lift my arms above my head.  I was exhausted.  Have you ever been so tired that when your head hit the pillow, all the cells in your body hummed alleluia in unison?  yeah... that's it.  Brennan and I did the best we could.

I think it was a combo (I'm finding when I feel bad during chemo, it's a combo of crap instead of one large piece of crap) of body aches (I've been slacking on my water intake), the cold, exhaustion side effect of chemo (which accumulates with time), and the nasal drip into my stomach causing nausea.

Anyway, I woke up Wednesday morning with renewed energy! AND like I've said before when the bad days are bad, the good days are really really good.  We had a wonderful day at the park on Wednesday, and yes ... I know it is so so hard to believe, but Brennan went down the big curly slide all by himself.  What a guy!

Random Facts - 1 in 16,600 females in the US have Hodgkin's.
http://www.wolframalpha.com/entities/diseases/ih/jg/nl/

Wedding Number 2

Generally I don't blend in and don't mind not blending in with the crowd, but that is precisely what I wanted to do last Saturday. Eric and I went to a wedding; I wanted to look like an average wedding attendee. The Mission -- Don't get any that-lady-looks-like-she-has-cancer stares. With no eyebrows, no eyelashes, and thinning hair, I was nervous. Brennan and I went to the drug store on Friday to begin our preparation (early preparation.... I told you I was nervous ... and neurotic).

First, we looked at fake eyelashes. Did you know that putting on fake eyelashes involves applying glue to your eyeball? ... just about anyway. Yes yes .. one nervous twitch and the windows to your soul could be boarded up permanently (like I said neurotic). In the drugstore, we discovered that we had choices - eyelashes with lots of hairs, hairs spaced far apart, long hairs, short hairs, brown, black, individual hair clumps .... it's a nightmare. You think I'm kidding? Take a look yourself and tell me I'm not right ... nightmare. So we picked up two packages; two in case the first got stuck to our cheek, forehead, in case we dropped it in the toilet ... you get the idea.

We also bought an eyebrow pen (didn't know they existed) and some dark blush. Kari ... do you know you're pasty white and dark make-up of any sort will make you look goth which is fine accept when you're trying to blend in at your conservative friend's wedding. Actually, I bought the dark makeup to put in my hair. Remember the infomercials for spraypainted hair? exactly.

Since I wasn't sure if I could wear the eyelashes more than once and the package said I shouldn't sleep in them, I waited until Saturday morning to try them out. If I could get through the morning in them, maybe I could make it through the wedding. To my surprise, one of the packages of eyelashes said self adhesive ... whoo hooo..... no glue. I pulled them out, cut them to fit the length of my eyelid, and stuck them on. It was relatively easy, and to my amazement, I looked instantly more human. Phewww... hurdle number one ... check.

Next, I tried my version of the hair spray paint. Um yeah.... not pretty. I couldn't get the make-up on thick enough to make a noticeable difference to my thinning hair. What was I going to do now? I thought about trying to find a hat last minute; I think this thought was influenced by William and Kate's royal wedding. I wasn't British, far from a fashionista, and I knew I couldn't pull off wearing a hat to a wedding ... let alone do it while blending in .... and where the heck would I find one? (I'd still like to know the answer actually). My next thought was to braid my hair over the top of my head ... ummm... long shot, but I googled it anyway. This is the picture that google gave me.

YES... I want to look like this gorgeous woman ... ummm yeah. As I'm reading about intricate ways to braid my hair (so I can look exactly like the above picture), I ran across a young girl's post on yahoo answers that said, make your life easy ... go to the store and purchase a fake headband of hair. I looked back at the picture of the gorgeous blond above, and noticed that her braided hair did not match her real hair.... who knew! I got in car, drove to the nearest suburban shopping mall, went into Claire's (aka - store with cheap hair accessories geared towards teen girls), and bought a fake headband of hair for $10 ... it was perfect. One color fits most .... check.  My look was now complete. Here.... is the end result from all my hardwork! Drum Roll please.





Exhausted

Let's be honest here - I'm exhausted. I'm not sure if it's the bug that I caught seven days ago, or the cumulative chemo side effect, but there's no doubt about it - I'm beat.

It just so happens that Eric and I have reinforcements coming tomorrow... aka Grandma and Grandpa.

It's time for a nap.

Quick Update on Chemo #9

Insurance company's play a role in my treatment as well. They send nurses/doctors through hoops to pay for a certain test, so the nurses/doctors may find a different cheaper test that is also acceptable, or the insurance companies will give them the info about this less expensive test and encourage them to use it.

In regards to my tests two blogs ago, the Echo is a cheaper test than the MUGA.  My nurse/doctor team has started to twitch ( I meant to say switch, but what a great freudian slip) to the Echo because of insurance companies.  I wish their reason also included the increased exposure to radiation, but what do I know, maybe it does.  I haven't talked specifically to my doctor about this detail; sometimes the true reasons for a change can be convoluted when I don't go to the source of the information.

Another example of insurance-company envolvement is the choice of my nausea drugs.  I had EMEND during this chemo in addition to the ZOFRAN.  I've been getting more nauseous with the chemo treatments (cumulative effects are normal with ABVD - the type of chemo I'm receiving.).  It had been subtle, but I have been getting slightly more miserable; I see my knuckles turning white - figuratively - during post chemo days.  My nurse simply wants to nip this additional strain in regards to the nausea in the bud quickly; she said that if I were to puke once during post-chemo, patient comfort tends to get considerably worse for future treatments (fear and anxiety increase significantly ... what else could get worse?  Maybe puke begets puke).  EMEND - you've guessed it- is an expensive drug that the insurance companies don't like doctors to use as the first line of treatment.  Zofran isn't as good of a drug, but is cheaper and is generally used as the first line of treatment. 

So, I'm on EMEND and so far so great!  I didn't have any initial side effects when they were administering the drug; this is when the patient can have side effects (the danger that I was worried about.)  Some people get restless (I heard anxious which isn't my cup of tea), but luckily none of this happened. 

AND the nausea is minding it's own business thank you very much! Ahhhhhhhhhhhhhhhhhhhhhhhh!

Alright, back to bed.  It's the night after chemo so the steroid wakes me up about this time, but the Adivan is starting to kick in so I can sleep again.  yeah.  Have a good day and someone remove this consistent rain over the Chicago area for me.  I'm finding that I can only picture myself as a sprouting plant enjoying the rain for so long; my plant-self is getting overwhelmed by the deluge too.  We're all in this together ... go away rain!

Chemo #9

I'm not an asshole (as my last post indicated), but I think the point was clear; I have decided to be involved in my treatment.  I think y'all probably know that, but I wanted to clarify.  The word asshole is a gross exaggeration.

I am about to leave for chemo #9!  I am feeling like I'm in the 16th mile of a marathon (I don't have personal experience, but I believe that this is a pretty tough mile). I'm excited to have the next two chemos under my belt, so I can see the finish line.  I've been writing on an online Hodgkin patient forum and there's a fellow patient with the Hodge who is exactly 3 weeks ahead of me in the same treatment plan.  He posted on Sunday that he can see the finish line and he feels really good about it.  I have 2.5 weeks until I'm in his exact spot.  Surprisingly, this is very helpful to think about because 2.5 weeks is much for doable than 2 months.  Did you catch "The Hodge?" If you use the Hodge instead of saying Hodgkin, your coolness factor goes up ... no really.  Cool nicknames are all part of having a young persons disease!

I did wake up with a cold.  Brennan and I walked around in the misty weather yesterday.  Perhaps that's why I feel sick, or perhaps Brennan was sniffling before our walk and I caught the cold from him.  Whichever way, I will probably put me back on antibiotics at my chemo session today.  They did this a few months ago and after a several days of digestive issues the cold was gone.  I'll keep you posted.

Mirror Mirror

I was looking in the mirror today and noticed that my eyes were hollowed.  I looked a little funny ... perhaps ghostly.  My mind searched for the reason - was it my skin color?  What's wrong with me?  No... it wasn't my nose ... it's always been funny.  I was beginning to worry when it dawned on me - my eyelashes are thinning.  I seem to still have quite a few small blond lashes, but it looks as though my lashes are gone.  Here ... see for yourself.

A couple months ago, Eric and I were talking to a woman in the waiting room before chemo.  I asked her about hairloss; she had lost all her hair both times she went through chemo.  The first time she wore a pair of glasses to help frame her face because her eyebrows were gone.  This time she went to a makeup store and bought fake lashes and an eyebrow pen because she was sick of wearing glasses she didn't need.  I didn't quite grasp what she was talking about until my eyelashes thinned.  The glasses really do help me look more "normal," or at least more like me.  Alright, I look weird in both pictures, but trust me on the glasses thing ... they help.

So yes, my hair is still falling out all over the place.  There were several squirrels stuck to Brennan's pajamas this morning, and a big squirrel in the shower.  I have heard chemo patients say that such squirrels bothered them enough to cut their hair short, but I guess I like rodents because I'm not phased by them (my family ... well they're another story).  Here's a fun fact; the time of the chemo cycle I notice my hair falling out most is one week after treatment.  It's not right after treatment like you would think.  or ... it could just coincide with the time I get around to taking a shower ...

I think I've mentioned the "Assholes Live" concept.  It's the same concept as "The squeaky wheel gets the oil".  I most likely embarrassed my husband to death, but I definitely took this concept to heart today.  I was meant to get two tests today.  The first is the Pulmonary Function Test (to test lung function)and the second is the MUGA (to test heart function).  I had each of these tests back in December as baseline tests, and this second round is meant to see whether or not the chemo has had a negative effect on my organs.  The Pulmonary Function Test (or PFT) was a breeze.  This is the test that I struggled with in December because they lock you in a tiny phone-book-sized, clear box and shut your air supply off!  Turns out that they can do the test without the box, so this one was a breeze.   (I haven't been looking forward to being locked in the box, and have actually been practicing being zen in tight spaces for .... umm... a couple weeks now.  Eric even came with me for moral support.  Alas, the first time I had the test, the woman was merely trying to torture me.)

Back to the Assholes Live story ... the second test was meant to be the MUGA test, but when I checked in, I overheard the woman at the desk say to another woman that my doctor's order for the test was from December.

Assholes Live Lesson Number 1 - Don't hesitate to easedrop. 

It has been my experience that not everyone at the hospital shares information with me ..  the patient, so I've been finding ways around it.  If I think they aren't telling me something, I keep asking people until someone spills the beans.  My two advocates who know I like information and tell me everything are my doctor (he's awesome) and my chemo nurse (she's aweseme too).  So, when the woman at the desk gave me an order from December, I told her that it was an old order and that she needs to get a new one.  AND next, I paged the chemo nurse. 

Assholes Live Lesson Number 2 - Don't hesitate to page hospital staff - doctors, nurses, anyone. 

The chemo nurse told me that the order in the system was actually for an Echo cardiogram.  She confirmed that the MUGA order was from my first MUGA ages ago.  While I was talking to my chemo nurse, the woman at the desk (who already hasn't performed her duties well) called my doctor's nurse (not my chemo nurse) for a new order for the MUGA and she sent one.  The front lady at the desk is now relieved that her job is finished and tells me to wait for someone to call me.  Of course, my question is "WHY?"  When they paged me (I was busy looking up the difference between the echo and the MUGA on my phone), I asked the radiation nurse "why?" and she rambled on and on about it not being her job or some crap like that.  She finally offered to page my doctor's nurse.  The doctor's nurse called and told me that their was no difference between the MUGA and the Echo.   I didn't believe her, but I wasn't getting anywhere, so I told the nurse I would move forward with the MUGA only to ask the next person what the difference was between the two tests.

Assholes Live Lesson Number 3 - If you aren't getting straight answers, keep asking questions until you understand what is happening with YOUR treatment.

I finally got a real answer; the MUGA is more accurate, but it comes with a price - additional radiation - she told me that it comes with half of the radiation of a CT scan.  I don't want additional radiation (I'm going to have lots of CT scans and PET scans in the upcoming years ... I don't want more radiation).  SooooMUGA." He told me what I already knew.  I asked him if he preferred that I get one test over the other and he said that he does not care in the least.  If the Echo is at all abnormal, he will immediately order a MUGA.  Finally!  I walked out of the hospital and scheduled an Echo for the next day.

Am I a nightmare patient?  Yes. Eric was even wondering about my sanity half way through the process.   Am I an Asshole?  I don't think I have that title yet.  However, I do feel comfortable with my treatment ... and if there's a news report about concern over the amount of radiation given to patients during medical testing, I'll feel like I did the right thing.  Now if you'll excuse me.... I have to go all the way back to the hospital for my Echo!!!!!!!!!  he he...... 

Nauseous

Ever wonder why every two weeks I stop blogging for about 5 days?  No .... thought not.  I'll tell you anyway ... it's not easy to blog nauseous.  Not easy to be witty ... not that I am when feeling well but at least I have half a chance at accidentally saying something amusing.

This last round was rough, but not for good reason.  It was mostly due to an acupuncture session that I had the day after chemo.  I went to a new acupuncturist since the one I normally go to is out of town.  The session started normally enough, but then the acupuncturist said five little words, "I'm going to do aromatherapy."  In my relaxed state, I felt that there was something wrong with this statement, but I couldn't put my finger on what it was.  The acupuncturist put an essential oil under my nose and instructed me to breathe in 5 times.  As I was doing it, I subconsciously knew something was wrong, but I felt funny saying, "ummm... something is wrong breathing in your pure essential oil, but .... sorry... no clue what."  After the acupuncturist left the room, it finally dawned on me.  It was the same scent (lemon) that I smell right before chemo begins (on top of being super sensitive to smells - thanks to the chemo).  My port has rested two weeks when I walk into chemo, so the nurse needs to draw out blood to make sure my port is usable.  To draw out the blood she/he first injects saline.  Now this saline at first was no big deal.  I even scoffed at the warnings of those who had chemo-ed before me; whatever guys - this is a cake walk.  But, yet again (you're not allowed to agree) I was very wrong .... so wrong, it's on the verge of hilarious.  Well, I now use lemon to cover up the taste of the saline ... and we've come full circle.

The association between lemon and chemo is so strong that I almost can't bear to write this; I can feel a nauseous ache in my chest.  So Kari .... stop writing and go think about oranges instead!  Well wouldn't that be smart, but alas, the desire to blog has overwhelmed me and I can't help myself..... ummm yeah ... moving on ....

Third Opinion

I forgot to tell you about our third opinion.

We spoke to another medical oncologist here in Chicago after we got back from San Fran.  When he walked in the room, I said, "Really what we want to do is buy you a beer and pick your brain."  He was a top guy who wasn't afraid to admit when he was wrong or didn't know the answer, AND he wasn't afraid to treat us like fellow investigators.  Eric and I thought he was absolutely fabulous.  Two things we took away from the meeting:

1. Secondary Cancers from radiation are real, and they do happen.  This means esophogial cancer, thyroid cancer, breast cancer, and heart disease (not a cancer, but work with me ... it's late.)
2. He took us in their super-secret, medical-personel-only, messy (yes yes ... messy) back room and showed us our CT and PET scans.  He's the one that gave us enough knowledge to start talking to radiologists which has been uber helpful (we now feel like we have a better grasp on my particular case).


He recommended .... no radiation.

Pesky pesky pesky decision

Hi everyone!  All is well at the Robbins' home front.  The pesky decision making process is (hopefully) complete.  I think we're going without the radiation.  That means two and a half more months of chemo.... wooo hooo! A special shout out to two wonderful radiation oncologists who spent hours with Eric and I going through my scans.  Nothing like teaching someone anatomy who has no idea where the spleen is (do you know?).  Like I said, awesome radiation oncologists.

We learned from these radiologists that there is some uptake in my "clean" PET scan.  This means that there was some metabolic activity in the exact location as my largest nodal mass.  This of course worried us.  But, my oncologist said that a totally normal PET is unheard of.  In addition (Eric and I seem to need to hear the same thing twice before we believe it, especially if it's good news.), Eric talked to a radiologist today who is a friend of a friend, and she said that I had a really good reaction to the chemo.  She also called (like ring ring on the telephone) the radiologist at Northwestern who originally read my PET to ask specifically about the residual uptake.  How totally cool is that!  I love when doctors talk about my scans! The Northwestern radiologist brought my PET up on his screen and took a look at it again; he said that the amount of uptake is insignificant.  First, Northwestern doctors are awesome (he brought it up on his screen to look at it again.)  Heck, all the doctors I've spoken to (minus one, but poor guy was just uptight.) have been tripping over themselves to be helpful.

Ultimately(this is after the zillion of hours of research and conversations), I attempted to make the decision by trusting my gut which isn't super easy considering my mind is hard to quiet these days. 

Chemo number 8 of 12 is tomorrow.  If I did the radiation, I think I would have kept my hair, but without it I think I'm going to have to kiss my hair goodbye so keep watching for the updated hair watch. I may never shave it, but I am going to get my wig fitted.  Not because I'm stoked about wearing a wig, but because I have the name of an awesome wig designer.  Who doesn't want an awesome wig designer to cut and style a wig just for them?  Jealous?  I know ... it sounds like a too-much-fun-to-pass-up adventure!

San Fran etc

It was awesome to see the sunshine in San Francisco!  We "chose" a gorgeous weekend to make the trip.  Three of the photos above are us walking around Marin county on Sunday.  Two photos are of Brennan and a fellow 16 month old at the airport checking out the moving walkway ... so cute.  And I couldn't leave out the photo of Brennan in his wagon with all of his balls which he loves so much.  The trip was very fun.  We stayed with one of Eric's longtime friends who I finally got to meet; she has a killer view of the city from her house.  Brennan's Aunt once removed (Aunt's sister) hung out with B while Eric and I were at Stanford for our appointment.  It was a completely last minute trip, and we are so thankful for how more than willing our friend and fam were to go out of their way to help; the world is a good place I tell ya.

But .... what about the point of the trip.  Well ... the doctor at Stanford said the exact opposite of our doctor ... do the radiation ... ugh...  We asked dozens of excellent questions, and - I think -  we came away with some good information  Definitely no decision though.

Second Opinion

We bought our flights after midnight last night.  Eric, Brennan and I are off to San Francisco today for an appointment at Stanford on Monday.  I'm excited to see the sunshine, and I'm glad that this appointment worked out.  We were meant to go next week, but the doctor's schedule changed.  San Francisco here we come ...!!

Chemo #7 ....pictures ...

.... to come.  I have been struggling with my computer posting pics, but I am having it fixed today ... I hope.  I'll spare you more details.  If you're anything like me, dealing with computer issues is only slightly better than reading about someone else dealing with computer issues.

CHEMO DAY - Yesterday I walked briskly to the train stop about 10:30 am.  I was on my way to acupuncture prior to chemo.  The librarian sent me the Hodgkin files I requested one day early (late yesterday night); I had printed off one of the many files she sent and was reading and walking; luckily I didn't have any gum or I surely would have run into a poll.  When I reached the platform, my Aunt called me.  She wanted to tell me that she had read my previous post about the radiation or no radiation dilemma and that she was feeling for me, thinking about me, and sending love our way.

I was grateful to hear from my aunt.  First, her phone call took me out of mode.  Eric and I have been getting our arm-chair PhD in Hodgkin Lymphoma for a few months now, and a break from it is sometimes helpful.  Second, I think it was the first of several coincidences that occurred during my day; it reminded me of the powerful, and vast community network around me that I was unaware of prior to Hodgkin.  The community network helps me to do things that I wouldn't ordinarily do on my own. I'm basically a lazy, procrastinative, long winded, exaggerator, with dry skin, and funny toes; I definitely need all the help I can get.  Support (and not the type under wires generate) gives me confidence to find the right next step today and tomorrow.  Writing for example .... doesn't happen without y'all giving me some umphhhhh.  Anyway, let's move on.

While talking to my aunt, a man in the train car I was in was smoking ... not cool ... especially around someone like myself with potential lung toxicity from the bleomyacin (one of the chemo drugs I am taking).  I had to run away quickly to another car with a trail of other patrons on my heals.

Alright alright... let's make some progress with this day or I am going to blogging until the cows come home and there isn't a lot of room for them here in Chicago.  Acupuncture was relatively uneventful accept that my acupuncturist wanted to make a copy of the new article I was reading.  The article does a good job explaining the details of the radiation no radiation debate.  The fact that my acupuncturist was interested made me feel tingly inside.   Here's the link to the article in case you want to give me even more of these tingles/goose bumps ... no pressure ... unless you want pressure .. then lots of pressure.  Alright I get it... we don't have all day Kari.

http://asheducationbook.hematologylibrary.org/cgi/reprint/2010/1/108.pdf

Chemo #7 went as planned.  We talked to the nurse about my nausea the Sat/Sun following Chemo #6.  She said that the next step would be to add a drug called Emend to my regiment.  It is an anti-nausea that would be administered with the rest of my chemo drugs intravenously.  This isn't the first time I have heard of Emend.  It seems to be a "savior" drug in the cancer community.  However, I was reluctant because I'm doing pretty good overall with my treatment.  Isn't less ... more?  Eric and I decided that the upside was minimal, but the downside (having to "figure out" how another drug works and what side effects my body will create) was potentially more than minimal.  We decided to hold off for this chemo treatment.  If I'm really nauseous again, then we'll reconsider in two weeks.

Then, our Oncologist came for a visit.  I was loopy (feeling kind of drunk as I do every chemo treatment) from the Zofran that they administer prior to the chemo drugs.  Not many patients are affected by the Zofran, but even when given slower than normal, I still get a little loopy.  I believe that Eric and our Nurse truly enjoy my loopiness.  I'm a bit of a goofball during chemo.  For example, we talked about the possible places the chemo drugs could come from.  Shark Urine was my first guess.  Our nurse thought Turtle tears.  Eric thought Turtle sweat.  Somewhere (or so Eric says) there is a gym of turtles running back and forth.  They get sweatier with time considering they get skinnier and have to carry those super heavy shells.  Poor turtles.

In comes our fearless doctor (his title is medical oncologist by the way) ... and Eric and I had all of our ducks in a row.  Basically, it showed that we had graduated with arm-chair PhDs.  We even had the medical textbook sitting out on Eric's lap in case there was any doubt.  Our doc got the hint and pulled up a chair.  It was super good to talk to him, and super good to have Eric there because like I said, I'm a little drunk during treatment and nauseous ... saying the right thing to a very smart man becomes ridiculously difficult.  Eric did really well.  Our questions were not focused on clinical studies, though they certainly were periphery.  We needed the doctor to tell us how our case fit into the mix.  Our arm-chair PhDs taught us very little about reading PET scans, CT scans, and blood work.  To be honest, we never actually put the PET scan/CT scan DVDs into our computers.  We asked very specific questions about my 9cm conglomerate of lymph nodes and whether that's better than one big node, we asked where I fit on the international prognostic factors scale, we asked if my PET was controversial (as the new studies are finding that many PETs are read as negative, but that they could possibly be read differently - he said that we have one of the least controversial PETs ... great news), we asked about getting a CT scan which can also help determine if the cancer is gone (I'm getting one in a few weeks; the doctor was thinking the same thing we were thinking).  To sum it all up, we asked good questions.  As Eric put it, we came away from the conversation feeling like we had asked all of the right questions, AND we earned that feeling by doing our homework and knowing what to ask.

My last question to our doc was twofold - what does he think my chances would be of a Hodgkin's cure if I had the radiation v. if I did not have the radiation.  He said without hesitation that he thinks my chances are 90% either way.

Eric and I left feeling good about the conversation.  I of course left feeling sick.  ughhh... well, we're more than half way done no matter how you look at it.  yeah!!!

As for today, I feel NAUSEOUS!  ugh.

Clean hair

It's been a fairly good week. The big radiation or no radiation question is still weighing on us. Eric and I have done a lot of research, and we have three appointments to get second opinions.

• Radiation Oncologist at Northwestern - April 7th
• Medical Oncologist at University of Chicago - April 7th
• Radiation Oncologist at Stanford - April 12th

The doctor from University of Chicago studied in Belgium. I'm hoping he adds a European slant to the conversation; he's also an expert on stem cell transplant (the next step if this doesn't work). Most of the studies on Hodgkin Lymphoma are out of Europe because of their ability to fill the studies easier than we can here in North America. Perhaps he can explain the dichotomy between Europe and the US on the radiation topic from a different standpoint. Yeah yeah ... its a long shot, but we don't have anything to lose.

The Oncologist from Standford is Dr. Richard Hoppe. He wrote the medical textbook - Hodgkin Lymphoma - and he's our medical oncologist's friend. Our Oncologist thinks he may agree with no radiation even though he's a Radiation Oncologist. I'm hoping everyone is in agreement because it will make my decision easier. No radiation is generally for those patients with favorable Hodgkin's. I found out at my last appointment that I am officially considered unfavorable. To be unfavorable, you need to have at least one of the following (these qualifications vary quite a bit from program to program, but here's an example):

1. male (we always knew they were unfavorable)
2. Age greater than 45 (hmmm... my husband is but you don't get older from osmosis.)
3. Sed Rate without B symptoms OR >30 with B symptoms (I don't qualify, but I am just on the cusp of qualifying)
4. Greater than or equal to 4 lymph node sites (I have 4 sites and maybe even 5 sites)
5. 10 cm growth inside mediastinum (My largest growth inside the mediastinum is 6cm, but outside it's 9cm. Some programs say it can be inside OR outside the mediastinum which is the center of our chest. So again, I'm closer to qualifying than I want to be.)

As my doctor said, I am borderline. If I was favorable (and I'm not) and I did not have radiation, I would have an 87% chance of FFP (FFP basically means that I won't have a Hodgkin Lymphoma relapse). If I was favorable and I did have radiation, I would have a 94% chance of FFP. Having radiation comes with long term risks. Mainly, heart disease, lung cancer and breast cancer ... breast cancer especially may increase to as high as 50 times more likely than the average person 20 years post treatment.

Now Kari you ask.. what the heck does that mean. You just said you're not favorable ... what are the stats on not favorable. I don't have a good answer for you because many of the studies that have been done are stopped because too many people relapse without radiation (Sounds scary, but I guess a few percentage points is considered too many people... I'm not sure where the line is drawn. Also, many times these unfavorable studies include people who are stage III and IV so the data is skewed). The studies for unfavorable tend to concentrate on how much radiation and chemo to give not whether or not to give radiation.

Kari ... you're sounding like a lunatic ... why wouldn't you get radiation. ENTER ... the clean PET scan. In the last few years, doctors have started to use the early PET scan to help determine treatment. None of the favorable/unfavorable indicators can hold a candle to the early PET scan in determining whether or not a patient will or will not relapse. About 80% of patients have a clean early PET scan (actually it's 85% of favorable patients and 72% of unfavorable patients) and I am luckily one of the 72%. There are a whole bunch of studies that have just started or are ongoing regarding the early PET scan, but there aren't a lot of results yet ESPECIALLY for those considered unfavorable.

Now, you know .... you know all of it ... the dilemma ... the gamble. My doctor said that if I were his daughter, he would not do radiation. We'll see what the other three docs say. We have about 2 weeks to make the decision. We'll keep you posted.

HAIR WATCH (the crowd favorite) - I still have hair on my head. My eyebrows are intact and so are my eyelashes (though thinning). I don't have a lot of leg hair though. I have only been washing my hair twice a week. Someone told Eric the less you mess with it, the longer you'll have it and I took that to heart. I try not to touch it ... ever. Yes yes... I look like I should break out into song ..... grease lightning!

LIBRARIAN WATCH - So, there is a cancer library at Northwestern hospital. I called and spoke to the librarian. She is doing some research on radiation for me, and will be sending me lots of reading material tomorrow morning. She has access to a lot more material than I do. Yeah for librarians! They are similar to Fire Fighters .... everyone loves librarians!

Cancer-patient skinny

I am happy to report that I feel better ... pheww. Not great, but a whole lot better. I'll take it.

I also wanted to report that I have received several compliments on my trim figure. Basically, I'm cancer-patient skinny as I like to call it. I'm almost 15 lbs lighter than my typical weight (it fluctuates with the nausea). I eat peanut butter right before I go to bed to keep my weight up, and when it really drops as it did last chemo cycle, I grab pizza and alfredo sauce (there's only so much peanut butter you can eat before you become a nut) . Sooo, why the multiple compliments? Because skinny is hip. (I like being un-hip better.)

Feeling .....

.... like crap. Eric, Bren and I made sure to get out in the sunshine today - played ball, shopped, ate dinner ... all necessary, minor distractions, but I still feel like .... crap. Mainly it's nausea ... eating is hard. I don't want to think about it too much ... don't want to vomit. I haven't felt sorry for myself all day. I was able to help a friend this morning. Helping someone else immediately turned off the mini violin that was drowning my sorrows.

I did receive "Hodgkin Lymphoma" by Richard Hoppe in the mail today. It's a medical textbook on Hodgkin's. Surprisingly, it isn't all that difficult to read, and I read a good chunk of it today. I also spoke to a friend of a friend who happens to be a radiation oncologist. He would do radiation in my case; it's the standard course of treatment. Still trying to decide whether to have radiation or not. Here's some other interesting facts:

1. Secondary cancers from radiation treatment are much more prevalent in a 22 year old than a 32 year old.
2. If the cancer recurs, it's usually found by the patient who complains of symptoms and not by a CT scan.
3. Lymphoma and Leukemia (Blood Cancer Awareness) day in Chicago is April 12th thanks to Mayor Daley.

With that, I'm signing off ... meditation time ... and then bed. Ugh.... if you feel healthy at the moment, be grateful.

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Is this a coincidence?

It's always good to get jolted back to who I am, or at least who I want to be. That's been this weekend. Catholics believe that lent is a time to get back to this place ... the place of who I really am ... who I was meant to be. (It's surprisingly similar to Ramadan which is a time Muslims try to purify themselves by practicing patience and kindness.) Lent happens to coincide with lymphoma which is a nice coincidence (I don't actually think such a thing exists, but that's what I'll call it for now). So where did this jolt I am referring to come from?

I think getting slapped upside the head with the illness creates a chain reaction. First, I went through survival mode. What do I have to do next? Go to surgery. Go to another surgery. Find a doctor, prepare for chemo. Eat the right food. Find the right medicine to combat side effects.

Then, I climbed up the mountain to take a look at the other side and ask -- What if? I know this will surprise most of you, but the answer I found was that life would move on without me. I know you were thinking that the world would evaporate without me, but alas, I'm not that important.

And now .... finally .... it's time to see life changes. How can I put every effort into the life I've been given? This is the fun part. What "coincidence" is going to happen next? Coincidences in my life usually highlight a growth opportunity. It was a coincidence for example that this time in my life coincided with lent. This coincidence emphasized that I am on the right road; if I allow it to, life is about to change. Yeah yeah ... I hear ya ... sounds like hogwash. You could be right, but my gut says otherwise ... and I may have a small gut (at the moment), but it's pretty smart.

Another coincidence was that right before I was diagnosed, I forged new friendships with a group of woman in my neighborhood. Lymphoma has actually strengthened these friendships. The verdict is still out, but I think I'm learning - how to gossip less and help more? It's not brain surgery, but it takes just the right situation to move a speeding train. So ..... when you stop reading that you're pregnant with twin aliens in the tabloids, you'll know, I'm a changed woman.

I'd tell you more about the coincidences in my life, but I'm already feeling like I'm metaphorically in my skivvies so that's all you get today ... (did you know skivvies was spelled with two v's?)

I feel good. No really ... I feel gooood. Apparently when I feel bad for a few days, the good days that immediately follow are really good. No ... I mean really good. It's like the moment you realize that you feel like yourself again after a bad illness ... only I get to have these moments every two weeks. Do I dare say it. No... I can't say it. Well alright, but I'm going to whisper it -- It's kind of fun. Now ask me if I still feel this way on Wednesday, and I may vomit on you.... graphic, but true.

The radiation or no radiation question is weighing on Eric and me. I added links to some websites below if you're intersted. The impossible balance -- do radiation and have a higher chance of getting rid of lymphoma the first time around, or don't do radiation and have a higher chance of being disease-free (breast cancer, heart disease, leukemia) 20, 30, 4o, 50 years from now. We're still trying to figure this one out.

http://www.medscape.com/viewarticle/737540?src=smo_nur
http://forums.lymphoma.com/showthread.php?t=42163&highlight=radiation
http://jco.ascopubs.org/content/28/7/1232.full