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.