Oh, so much on my mind

But that’s not a very good excuse for keeping it all to myself. Time for an update!

Let’s see; it’s Sunday and I had my second round of chemo on Thursday after getting the okay from the allergist on Wednesday. Basically, the urticaria (hives) were yet such a problem, that it wasn’t possible to do a proper skin patch test—I was simply too reactive. So I was rechallenged orally with decadron (dexamethasone–the steroid) and watched for an hour. I felt my eyes getting a little puffier, but it wasn’t obvious to the allergist and certainly not concerning. And given my description of my symptoms post infusion, he felt I was at a very low risk of being hypersensitive to the carboplatin.

Before bedtime I took my second decadron, a Zyrtec and a Claritan (antihistamines); ditto in the morning. We dropped Peter at school and headed straight to the hospital. I had labs (they looked great) and then it was off to infusion where I was given the usual dose of Alimta but less than half the amount of carboplatin that I’d had four weeks ago, and delivered at half the rate. A nifty little shut off valve was attached to my IV and an extra bag of saline hung just in case. However, the whole event was issue free.

And, hallelujah, I still feel good. No nausea, no obvious additional neuropathy, no facial numbness. Pelvic floor seems to have settled down as well. So, aside from some fatigue, it’s an entirely different situation than it was after the first round. This likely means there will be continued dialogue as to whether it is appropriate to bump my dose of carboplatin up again, but as I have a scan in two weeks, we won’t just be shooting in the dark.

I’m highly encouraged about my physical state and now just have to keep focusing on the mental aspects of this battle. Again, I’m getting there; really working hard on staying positive and hopeful both. Of course, not feeling poorly is a real boon, and I am incredibly grateful that I’ve been able to skip right over the unpleasant side effects this cycle.

What else is on my mind?

We are just winding down with Peter’s applications to private school. Last spring, when I experienced my first liver toxicity, I started to get a little panicky about Peter’s future. Of great concern is the fact that David is often away on business; a situation that has been difficult for me to navigate but which is simply unimaginable if I were to pass away. After a bit of serendipity (being seated next to a bright young thing from Phillips Exeter on a plane ride), I began to research the private schools in the area and decided that this was an option worth exploring.

It’s been a big process and crunch time coincided with my switch-up in therapy. However, in a week and a half the window for admissions will close and we will sit back and see what happens. It is not merely acceptance that is needed; we would require a substantial financial aid package so there are lots of unknowns. However, imagining both the potential opportunities as well as the extensive support system that boarding school could provide for Peter, I am hopeful that this shall become an option.

Also on my mind, the Lance Armstrong confession. I watched both segments and derived no pleasure from the humiliating spectacle. I could, however, relate to at least one claim he made; how it was only after battling cancer that he became a fierce competitor and that this was due in large part to the survive at any cost mentality.

I get that, and the truth is, all sorts of ‘banned substances’ are part of the cancer arsenal. It is possible to see how a line could be crossed.

However, what I will never understand is his willingness to lie, cheat and to destroy the reputations of others. That pervasive flaw can only be attributed to a wanton lack of character and I doubt that he will ever be self aware enough to realize all of the damage that has been done. I will still wear my LIVESTRONG bracelet though and support the charitable aspect of the organization. It is not about the bike, and it is no longer about the man. Originally a slogan cooked up by NIKE in a clever marketing campaign (and co-opted by cancer survivors everywhere), live strong is now about believing in myself.

And one more thing. Please keep my dear friend Thao in your thoughts and prayers. She is at a tough place where options are few and yet she is not ready to stop fighting. What Thao wants is one more chance to get ahead of the cancer. May she get it.

27 responses to “Oh, so much on my mind

  1. Will keep powerful Thao in my prayers. Glad your last round was uneventful. As for Lance Armstrong, I can totally see how he could cross that line and how he could get caught up in lies. I haven’t watched the interviews but I know from personal experience under less important circumstances, how I told one lie that seemed to be small and not really noticeable, and then it grew and I didn’t know how to get out of it. I can’t imagine being caught in a lie in such a public platform. At one point in my life, I considered lying to be the most unforgivable sin. Lately, I feel like – okay, whatever. He also did alot of good, in a field that I care deeply about, so all-in-all, I’m not the judge. Just my point of view!

  2. As always I read in awe! Patrick

  3. Kathleen Gereghty

    So happy for you that your recent treatment went so well. My thoughts are with you.
    Kristen had such a wonderful high school experience in a private school, hope Peter has the opportunity to attend one.

    • Hi Kathleen, I do hope it is an opportunity for Peter. Tell you what, either way, the application process has been a learning experience!


  4. So glad you are doing better this round. Will keep Peter, Thao and yourself in my prayers.

  5. Thanks for the update. Keep up the positive thinking and somehow, things will fall into proper places. I do pray for you, Thao and Peter.

  6. My father had a carboplatin allergy and I was nervous for you going into this visit. I’m glad to hear you didn’t have the same. Also, I have a young friend at currently Phillips Exeter. She is growing up beautifully there. I wish your family lots of luck on decision day.

  7. Dear Linnea
    I found your blog while doing some online research on cancer. I’m a journalism student researching on palliative care for cancer patients, and I was wondering if I could talk to you about this. thank you

    • Anjali, I just found this comment—I am sorry for the delayed response. If you would still like to contact me, I am more than happy to speak to you.

      Best, Linnea

      • Anjali Thomas

        Dear Linnea Thank you for replying to my message. I’d love to talk to you when you have the time. How do you suggest we go about it? I am on skype and gchat. Reading your blog is a truly humbling experience. Again thank you and kind regards anjali

  8. I echo Patrick’s comments. Thanks for the much awaited update.

  9. So much going on for you, honestly, it is mind-boggling to me how you manage it all. I always look forward to your updates, thrilled to hear the good report on your last treatment. I am keeping you and Thao in my prayers, Linnea. Your strength is amazing.

  10. Great news – so glad to hear this infusion has gone more smoothly! Hoping for good news for Peter! -DK37

  11. Prayers for your friend, your private school efforts and you. A good report was much appreciated by your groupies! Armstrong situation is a shame, but I will always love the StandStrong motto and will continue to use it. Here’s to a great week. Hedy

  12. Dear Linnea – so glad that your second infusion was much better for you. Don’t be surprised if you are very tired once the effects of the decadron end.

    You have a lot on your plate. I have observed that one of the things that seems common with this awful disease is that as a person feels they are losing control of their own body, they have to control every aspect of their life they can, sometimes down to the minutia. It’s a heavy burden to carry. Be gentle with yourself as you can only do the best you can and your best will change from day to day.

    I hope you can make a cup of tea, put your feet up and listen to my teenage, unrequited love, who also lived with lung cancer in later years, singing the most positive song for a cold winter’s day.


    • Beryl, I of course immediately took a listen–thank you. And you are wise and observant both. I am in mad dash mode to take care of everything. I witnessed my father going through the same thing, although with so much less time. It must be instinct–just like the nesting that happens prior to birth. I think it is best to honor, albeit not so much that I lose focus on everyday joys.

      love, Linnea

  13. So glad to hear that this round went well! May there be good news to come on all fronts.

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