Rolls with Punches

It’s our newly-adopted Indian name.  Here’s the latest.  Yesterday marked a sad day for us as we said goodbye to Maggie’s law office.  August 4, 2008, the first day in her new digs, until yesterday.  Actually, October 15th was the day we shut it down per doctor’s orders.  It has been sitting empty, a sad memorial to a brief, but much celebrated, career as a lawyer.  Yesterday Flo and Sami sealed the deal by delivering Maggie’s office computer to our house.  The new guy, the squatter, came to her office today to sit in the chair we bought behind the desk we picked.  We wish him luck.  But the saga is over… or, for at least now, is on hold.

Her pain has grown considerably worse lately.  Yesterday, Maggie was forced into shallow breathing to avoid sharp stabs of ouch.  She walked around in a crouch, if she walked at all.  She stays in good spirits but is clearly wearing her tough face.  She’s been going through the bags of feel-better juice much faster, too, but it doesn’t seem to be fixing the problems.  Suffice to say, Sunday night was a loooong night.

Late yesterday she took a steroid pill in hopes that it would help.  Thankfully, it worked; the pain ratcheted down a few notches.  We followed with another four hours later and another this morning.  Today she’s walking mostly upright and can breath normal again, well, normal as it’s been for the last number of months (no deep breaths and definitely no yawns.)  While steroids bring some immediate and much needed relief, they are merely a stop-gap.  The real beat down will hopefully come this Friday.

Steroids have provided miraculous relief for us, which is in stark contrast to the perception of those of us who grew up in the 70s and 80s when anti-steroid media brainwashing was probably at its peak.  We’ve seen them to be invaluable as an anti-inflammatory and they have definitely alleviated tremendous pain.  Unfortunately, steroids, like standard chemo treatments, are essentially bullets with a decaying effect.

Steroids cause the body to create more cortisone which reduces swelling which, in our case, reduces the pain from Maggie’s diaphragm rubbing against her lungs.  However, the body is frustratingly adaptive.  The adrenal gland, the maker of the cortisone, detects the excess in the system and halts natural production.  Whoops.  The resultant lack of cortisone creates an even worse problem which presents as elevated pain and discomfort.  According to Dr. Loukas, a person with too little cortisone “just feels bad.”  The answer seems obvious – take a steroid pill.  Then the cycle continues and, unfortunately, spirals rapidly downward.

The next step, we’re told, is to add a steady but minimal dose of steroids to our already omnipresent pain fluids.  It seems simple enough, really.  But one more artificial fluid screwing with the already delicate balance of the systems in the body does nothing but damage.  With the steroids come other side effects that must be managed including a swollen face, acne, difficulty sleeping, and who knows what else.  I feel we are watching another domino slowly fall.

We seem to have settled into a pretty dependable rhythm of vomiting.  We see about 50% of her meals twice, give or take a sandwich.  Oddly enough, she rarely has any associated nausea.  It’s very sudden, like a rifle shot, sometimes almost too sudden to react.  We’ve been extremely fortunate thus far that we’ve been able to catch everything, so to speak.  My Boy Scout training is paying off; persistent prior preparation is a life saver, or more appropriate, a cleanup saver.  Word to the wise -a berry smoothie and mac-n-cheese, if you gotta do it, are the things to eat.  Falafel, not so much.

We’ve been fighting a lot* lately, too, which sucks.  We’ve never been fighters, ever.  Verbal sparring for entertainment, oh yeah, but not fighters.  Of course, the fights are usually about critically important things like…uhm….  Well, I can’t think of any of them right now but let me tell you all of them have been over VERY important and critical, critical things.  And I’m always right, too.

* While I feel uncomfortable airing difficult personal issues we’re facing I’m much less inclined to paint some campy Ward and June Cleaver version of Chris and Maggie’s Great Cancer Adventure.  This shit sucks and it’s taking its toll on us physically, emotionally, and every other -ally you can think of.  We’re extremely lucky that we are the absolute best of friends through all this.  It’s difficult to imagine what this all might be like were we to be not so close or so lovey.  No matter what ridiculous nonsense we fight over we can always navigate back to our happy place of love, trust and friendship.  We are truly lucky.
 
Maggie has also developed a more regular cycle of fever.  Nearly every night and some evenings she runs about 101 fever.  There’s really no reason anyone has come up with other than the label “tumor fever.”  No harm seems to come of it other than dragging her down and making her feel rotten.  Ibuprophin or Aleve breaks the fever.  As a side-note, we specifically avoid Tylenol because we’ve been told that it is very hard on the liver.  Maggie’s liver is under enough stress dealing with the tumors.  No need to kick it while it’s down.

Thursday she’ll fly to Houston via Angel Flights.  She has a doctors appointment late Thursday (we still don’t know when) and then treatment starting early Friday morning. The treatment will last a full eight hours and, from what we’ve seen from past experience, will knock her on her ass.  I’ll be in Houston Friday to care for her and drive her home, assuming she’s stable enough for the trip.  I expect this weekend will be a wash, with baths and sleeping and TV.  We do, however, intend to attend a chili cook-off Saturday, if there’s any way possible.  I’ve been talking smack for too long and to too many people about my chili and, for the last five years have been unable to put up.  Hopefully this year I’ll be able to represent.  If not, there’s always next year.

Today we had yet another CT scan.  It was scheduled at noon.  We left the house at 11:30AM to get there early.  We left the clinic at 2:30PM, hungry and a little ticked off it took so long.  It’s really amazing how much time this stuff just eats away at our days.

We had a nice evening tonight.  We had a quick supper with our friend Kyle and afterwards we watched some mindless TV.  Maggie seems to be feeling ok although we’ve got a little anxiety about her pain pump. It has spontaneously turned off a number of times over the last few hours.  Yes, checked the batteries.  Yes, checked the fluid lines.  No, we haven’t changed any thing.  No, I haven’t taken it apart to see how it works (despite the urge.)  I’m sure it will be fine but it just all adds up.  And that pain pump has a really, really important task.  Simple, but important.

Since she’s been in more pain lately we’ve been going through the bags of fluid more often.  I’m guessing we change the bags about every 16 -18 hours.  The time depends substantially on the number of boluses she self-delivers.  Her current rate is 50 micrograms per hour with a 25 microgram bolus.  Sometimes (like probably tonight) those bag can changes happen at pretty inconvenient times but, hey, gotta roll with the punches.  After all, that IS our newly-adopted Indian name – Rolls With Punches.

27 thoughts on “Rolls with Punches

  1. Chris I see you’re up late too. My apologies for misunderstanding previous blog. I thought you were to be in Dallas and San Antonio this week. Either way, I’ll send my good vibes wherever you two are. I’m praying the meds will get Maggie’s pain under control, or some more accupuncture. I’d love to take you for beer and paintball or something to help you release the stess. I’ll take Maggie for some nice pedicures or massages and then we’ll pop cute balloon animals with bb guns.
    Sending my love to you both.

  2. I do not know you but I am following your blog. I have provided a link to mine. My husband has had it rough lately, too. I said a prayer for you and Maggie this morning. Hang in there!

  3. I can only imagine what it would be like to have a negative reaction to half of your meals! For one, eating is one of the few pleasures we all share. Then there is the whole “social eating” [we bond through eating] thing!

    Chris thanks for sharing the “bad” with the “good”. I appreciate the honesty. Who could get along perfectly when both of you are under so much stress? I’m feeling much appreciation for the authenticity and integrity you show in these reports and in your actions.

    I imagine how hard it is for Maggie, being such an active and independent person, feeling her “liberties” stripped away as time goes by. It seems even the most zen of us would have a hard time dealing with that sudden and necessary dependence, especially with the rising pain being so persistent.

    And you, Chris, so deeply in love with this woman. Your hearts so intertwined. Dreams of a a golden future together threatened. Shared memories of love and laughter. Seeing your best friend go through hell. Hoping for the best. Fearing the worst.

    Thanks both of you for sharing your story. For showing all of us how much a human being can deal with if they have to. I know you may at times lose patience and even feel like you are screwing up some how. But from this side of the fence it looks superhuman and it is an inspiration. It serves as a constant reminder of what really matters. I think of you two so often! It is scary and beautiful and it hurts.

    1. I could not have said it better myself. Scott, that was just amazing. Thank you for sharing in words what so many of us feel in our hearts.

  4. I agree with Scotter, You two are an inspiration to the world. Both of you are strong individuals and even stronger as a couple. The love you share and feel for each other resonates in your blog. I may not know both of you personally but i know you are amazing people and blessed in more ways than one. I will continue to pray for both of you and hope that the treatment works for Maggie. Keep up the Faith and keep rolling with the punches 🙂

  5. I don’t quote from the Bible very often but this verse from my childhood church days keeps entering my mind as I follow your story.

    ‘The LORD bless you, and keep you;
    The LORD make His face shine on you,
    And be gracious to you;
    The LORD lift up His countenance on you, and give you peace.’

    Thank you for sharing your story. Bless you both and know that many are praying for you.

  6. I’m sending lots of love from New York. Keep staying positive, and I’ll be keeping my fingers crossed about the new trial that starts tomorrow.

    Eli

  7. Scott, thanks for saying, most eloquently, what many of us feel the need to say but don’t often have the right words.

    Chris and Maggie, I send you continual prayers, strength, serenity, and love ….

  8. My name is Suzanne and I am from Texas. I currently live in Virginia Beach and have breast cancer. I read your blog on a regular basis..actually my husband and I both do. We feel like we know you, as most days we say to one another…hey how is Maggie doing? My father also has tongue cancer. You are both in our thoughts and prayers and a complete inspiration! Thanks and keep on fighting!

    1. Thank you for your message. You and your family will be in our thoughts as we continue down our path.

      It’s amazing to Maggie and me how many people have been affected by our blog. It’s difficult to wrap our head around, really, because, well, we’re just two ordinary people walking down a tough road holding hands trying to remember to whistle through our tears. I think the only thing sets us apart from people like you who are walking a similar road as us is that we’ve chosen to document our journey here for all to read, good, bad and ugly. That’s it. We are fighting the same battles.

      Our hope is that we can help just one person in some way through their journey, be it coming to terms with their own diagnosis, or trying to stay sane dealing with insurance, or hell, just learning that they aren’t alone. Or if we are really, really lucky, maybe someone someday might read our story and have a little more compassion for those around them who are struggling with whatever issue. Behind every face, smiling or not, there’s a story just as complex as ours.

      There’s a song that really touched me while I was struggling through graduate school last year that inspired me when things seemed just too overwhelming to handle. It’s cheesy but when I need a lift, there’s no accounting for taste. The song is by Rodney Atkins and is named “If You’re Going Through Hell.” The line that pretty much sums it up, the line that I have shouted aloud many mornings headed to school at 5:15AM, still dark outside, with tears streaming down my cheeks, is:

      If you’re going through hell
      Keep on going, Don’t slow down
      If you’re scared, don’t show it
      You might get out
      Before the devil even knows you’re there.

      ‘Nuff said.

  9. Maggie and Chris,

    I think about you guys constantly and you both are in my thoughts and prayers. If you have the time and are feeling up to it, I’d love to see you guys. I’ll be in Austin Saturday and Sunday of this week. If that’s not convenient, I’ll be back two weeks afterwards. Don’t slow down! Jeff

  10. Maggie and Chris I love you guys! Keep up the love, friendship and spirit. It will bring you comfort. I pray for you guys everyday. Much love and prayers.
    ~Cynthia

    1. Thank you. Sad story but it’s unrelated to our situation. Maggie never was given both Avastin and Erbitux simultaneously so it doesn’t apply.

      This story just goes to show how difficult of a time doctors are having fighting cancer. It’s a tough problem rooted in causes that are just not understood yet.

  11. When I saw the story on the news I immediately thought of Maggie. I knew I’d read that Maggie had received both of those drugs but just couldn’t remember if ever at the same time. GOD bless that she didn’t! I can’t even fathom believing you are receiving treaments intended to ease only to find out that they are actually making things worse.

    Sending lots of positive energy, thougths and prayers your way from Plano, TX.

  12. Chris and Maggie,
    I wish I had known you were going to be in Houston. I was there all week having tests done in regard to the trial I will be starting. I don’t know what I could have done; maybe just a hug and a prayer, but sometimes that is all that is needed. I hope that you find a drug combo that will help fight the cancer. Maggie sounds like a lovely woman.

  13. I usually don’t reply to the blogs but I feel the need. I can’t say how bad I feel and wish I could take some of the pain, emotionally and physically. Maggie, I know personally how hard it is to close a business. I cried for days and still have trouble. I really feel your heartbreak and I can sympathize. Just know that you are always in my heart and thoughts.

  14. Hi,
    You both are always in my thoughts and most of all my heart. One doesn’t always know or hear about solid partnerships, and may not believe there is such a thing; but you both have proved to me it does exist. You were meant to be together even through all of this. Love and Happiness! And prayers for a cure.

  15. Hi Maggie and Chris

    I know I don’t see you or talk with you as much as I’d like, but you both are always in my thoughts and prayers.

  16. Chris and Maggie,

    How beautifully you write and what a gift to be able to explain yourself the way that you do. I met Maggie at Deena’s Christmas party last year and then got to see Maggie again this year and I wanted to tell you both that she is in my prayers every day. God Bless you both. With big hugs.

  17. I am in tears after reading your hell and the perfect words Scooter said that epitomizes how we all feel. I love you both and wish i could take away all the pain and suffering you guys have had to endure. I miss you both and think of you every day and pray and pray for you.

  18. More hugs from up in Canada – your blog has been such a help as I’ve been dealing with news received yesterday that a dear friend has just been diagnosed with tongue cancer at the way too young age of 28. As someone who just wants to “fix it” could you suggest anything that you found helpful (and maybe some things that well meaning souls did that you found not-so-helpful)? I just want to give my gal everything possible to make it better (since I can’t – unfortunately – take it away).

    Love and light to you both.

    1. Mel, I’m very sorry to hear about your friend. I really, really, really hate this damn disease.

      As a fellow “fixer” I can sympathize with your need to do something. Here’s a list of things that, in looking back, were (or would have been) very helpful to us:
      • Listen to their story, as many times as they want to tell it. Don’t judge. Don’t correct them unless they ask. They aren’t always telling the story for any reason other than to hear it themselves. It’s a difficult story to “own.”
      • Bring them a spiral notebook, lots of pens, and a small accordion-style paper organizer. They will have lots of things to write down over the next few days and weeks and lots of papers to hold onto. God forbid this is one of those times that they just can’t find a $*&^#@ pen and something to write on.
      • Buy them these bags: http://www.gkrindustries.com/ I can’t say this enough times. Anyone going through chemo or any other nausea-inducing circumstance should have plenty of these bags on hand.
      • Force their significant other to “get out” and do something at least once every couple of days, even if you have to organize the event yourself. My friends kept me sane during the first month of our adventure by taking me out for a beer and letting me talk or cry or just hear about what else is going on in the world besides our crap.
      • Tell them (and you!) to slow down. I was in a big hurry to make things happen when this crap started. Being in a hurry isn’t going to gain you and those around you anything but more stress. Frankly, if the situation is so critical that something has to happen NOW to save their life, you are better serving them by sitting by their side, holding their hand, and listening to their stories.
      • This may not apply for your Canadian situation but here in the U.S. it’s relevant. Get in touch very soon with a patient advocate who can offload or at least oversee insurance issues. There’s going to be a lot of paper flying between doctors, hospitals, insurance companies and your friend. The doctors and hospitals want their money and the insurance company isn’t going to want to give it. Both are going to be poking on your friend. The best friend she can have during this battle is a knowledgeable hired gun who fights for her. It’s worth every penny. Becky at VersaClaim has been a lifesaver (and money saver!) for us. Just google “patient advocate.”
      • DO NOT let ANYONE say “if only…” or “what if…” or “I should have…” or any of those other mindfucks. There’s no good future in revisiting the past. Leave the past where it is.
      • On that same note, leave the future where it is, too. It’ll get here soon enough. I struggle with this every day. Try very hard to focus on the issues that are real right now and have to be dealt with TODAY. A million things can happen between now and a few minutes from now and sometimes they do. Right now is the time you have to share with your friend. Leave the future where it belongs.

      I hope this list is helpful. It’s just off the top of my head so if I think of other things I’ll send them along.

      Please send our warmest thoughts to your friend. And consider this a long-distance, international hug just for you: { hug }

      All my best.

  19. Eloquently spoken, my son! And (yes, I’m starting this sentence with “And) this advice is generally applicable to all of us, everyday, no matter what situation we find ourselves in…. even down to the notebook and the bags! You’ve learned some more of those “life lessons” we used to talk about. I’m just so sad about the way you had to learn them. Love, love, love …..

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