Down the rabbit hole once again


I was off drug for seven days–a subsequent post will detail why. On day seven my brother John called and at the end of our long conversation he said ‘your voice is back to normal–you’re talking fast again’. So I was. One prominent side effect of PF-06463922 for me is that I speak more slowly. It’s as if I just can’t quite drag the words out and for some reason (maybe all that effort) my voice comes out louder too. In addition, I often sound a bit incredulous, as sentences sort of trail up at the end. It’s something that not everyone notices–my neighbors in the lofts have only known the slow speaking version of Linnea. However it is quite obvious to me, my old friends and family.

That was really sort of fun, talking fast. Better still, that evening I realized that I felt different as well. Kind of like the old me–sharper, calmer, more organized in my thinking. Clearly the drug had washed out of my system.

The next morning I started dosing again. Within forty eight hours my speech slowed and that sense of internal calm evaporated (emotional lability is a potential side effect of this drug, and was a big problem for me when I was on the higher dose).

Yesterday was one of those days that just keeps poking you with a sharp stick. This whole college application thing has been incredibly complicated and Peter let me know that some forms I was supposed to submit for his financial aid package were missing. This ramped up my anxiety as I am no longer able to retrace my steps, if that makes sense. I feel sort of like someone crossing a canyon on one of those suspended foot bridges, and as I run, the bridge falls away behind me. In other words, no easy way to go back.

My daughter Jemesii was having a bad day too, as a psych eval that she had waited a month for (and gotten up very early to go to before work) was cancelled upon arrival because the doctor had called in sick. She would have to wait yet another month for a new appointment. Insult to injury, the receptionist was rude and insensitive–someone who should not be working with a vulnerable population. This stressed me out some more.

I had an appointment at noon for a new general practitioner–someone who works specifically with oncology patients. I was super excited but didn’t know how to get to MGH West and just assumed Siri (on my iPhone) could help me find the way. Well, she couldn’t parse the difference between 40 2nd Ave. and 42 Ave, which apparently doesn’t exist. And Waltham just didn’t compute for her. I turned my car on to warm it up and noticed three lights were flashing but I decided to get on the road anyway. As I pulled out I placed a call to the doctor’s office for directions but the switchboard ended up putting me through to billing where I was on hold for almost ten minutes. That individual wasn’t able to help me but said they would connect me to someone who could–but all I got was ‘We are unable to answer the phone but you can leave a message at the tone’. Damn. I tried Siri one more time, with a little less specificity. This time she understood, I got my exit, and was almost on time.

After the appointment I looked through my vehicle’s manual to see what those flashing lights meant—next to the icon that looked like an engine it said ‘take to Toyota dealer immediately’. Well fuck.

So this morning I drop my car off at the mechanic. I had scans in Chelsea so the plan was to take the train to Boston, walk to MGH and catch a shuttle to Chelsea. As I walked the half mile to the train station in Lowell our property manager called and told me that I had mistakenly sent my alimony and child support checks rather than those for rent. Oh boy. After I boarded the train I reached for my wallet and it wasn’t there.

Sometimes a girl just has to say uncle.

So home I went. Made myself a cup of coffee to calm down/warm up again. Called Chelsea to cancel my scans and sent my scheduler an email. This is one of those moments where my own challenges feel, well, just a little too challenging. That’s code for ‘and then I feel sorry for myself’. However, it never takes me long to gain perspective. Life is hard for most, and almost impossibly difficult for some. This drug that muddles my brain is also keeping me alive. And I can’t argue with that.

28 responses to “Down the rabbit hole once again

  1. OMG. WE all have bad days but yours takes the cake! I got one of those warning lights on my Toyota and it was just that the gas cap was not screwed on tight! LOL.

  2. Hi Linnea,
    I am sorry you had that day. You are dealing with so much pressure. I wish you had someone to go to ALL of your appointments with you. I’m sure you have had many supportive family and friends over the last ten years of treatments, however, it still makes me sad that you have to endure all of these tasks on your own. Coffee is always what I go to when bad says come!
    May I get your home address? I have just the perfect card for you! I’m a card person. Thank you and to a much better day! Linda

  3. Martha Dervish

    I learn so much from your writings and admire you tremendously.
    My 54 year old son in Atlanta (athletic never smoked) has been been battling NSCLC for 18 months. He has been on Tarceva alone for a couple of months when a new blood test finally found EGFR mutation. Before that he had various chemos and an immunotherapy that failed. He is doing quite well and works, travels with his family and enjoys life. His attitude reminds me of you –
    fighting the good fight and facing everything with humor and courage.
    I still can’t understand why my boy has cancer when his father nor I ever had any cancer, not even a tiny basal cell skin one.

    • Martha, I can only imagine your pain as a mom and I am so sorry. Unfortunately the origins of lung cancer in never smokers is still poorly understood but I know so many young, athletic people in the same boat. I am glad your son is doing well and I ❤ humor and courage both. Hugs.


  4. Oh my, Linnea. Taking the time to acknowledge a crappy day or few days… Able to see the silver lining… You are awesome. xo

  5. You inspire me even (maybe especially?) on a bad day, Linnea! Take good care and hope the car issue and all the other problems melt away very soon.

    • Robin, they were all temporary problems but sometimes the demands/side effects of treatment just upset the balance. I got there though—today is a much better day.


  6. I feel your pain Linnea, I to am on the clinical for the PF-(numbers). I teach anatomy and physiology and sometimes I forget names of organs. One other side effect that I am having is my vision. and depth perception. Sometimes it feels as though someone is playing with my face…trying to slide my nose over to one side and push my cheek up. Weird. You still inspire me though. .

    • Rob, I hope you don’t mind my saying that your comment made me laugh. Not the part about forgetting—that is painful, but rather about your nose and cheek. And yes, I have had similar otherworldly symptoms such as that. We are on a strange trip that few ever travel and sometimes it’s hard to describe what we see/feel.


  7. Why do all the crappy things always happen around the same time? I’m so sorry you had to deal with all of this—way too much! Please let me know if there is ever anything I can do to help you. Wishing you MUCH better days ahead.

    • Thank you Susan–it was all a temporary set back. I am definitely a cup half full person but sometimes I feel it’s important to share the frustration as well. I was hard at work in my shop this morning—we need to get together soon!


  8. Oh, Linnea, I simply can’t imagine all those things going wrong at the same time. So sorry. All I can do is pray for you and your situation .
    Love you so much!

  9. Linnea, I just want to advise you to download WAZE for your gps in your car. It is very easy to use once you get used to it. I use it every day and can’t recommend it enough (it even winds you around traffic if necessary).
    BTW we did meet once at MGH in the hallway on the 7th-I am excited when I see one of your posts!

    • Susan, you read my mind. Siri often sucks and my garmin is currently non-functional so I am looking for a good APP. Thank you thank you thank you! And I do remember meeting you 😉


  10. Yes, This. I understand…

  11. That totally sucks. Looking forward to meeting you.

  12. Linnea,
    I love your writing but I’m sorry you had a bad day. As an MGH patient, I now get my monthly lab work, and every-8-week scans at Waltham (there are other satellites as well, I suppose). Parking is free, but the café there is not that great. On the plus side, Costco is across the street (in case you need 50 pounds of rice or 5 gallons of pickles). 🙂


    • David, I usually get my scans in Chelsea but I should ask about Waltham—it is closer to Lowell. And lord knows I need some pickles 😉


  13. To quote a beloved friend who now resides in Heaven, “For shit’s sake”. You are an inspiration to me, as I am still trying to “live” life again, rather than simply surviving. Lovelovelove to you. Deborah

    • I love that too (shit’s sake). It takes time and it is easier sone days than others. Concentrate on the journey rather than the outcome and it will get a little bit easier to grab the day. xo


  14. Some days just putting one foot in front of the other is success. Remember to breathe.

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