Felicitous

All emotional pain and joy is the same

Snow covered bicycle in NYC

For everyone that shared my letter to Vice President Joe Biden, thank you. I’m hoping that it will find its way to him somehow. And if you’ve not shared it, please consider doing so?

Alison finished her radiation and chemotherapy this week. The standard route is six weeks but ours was only three because the surgeon took out so much of the tumor.

Doctor: In some ways, her collapsing was felicitous. Because the surgeon did a beautiful job cleaning up the tumor. And we can also reduce the number of treatments.

I agree. If nothing else, not sure Alison would have been able to finish a full six weeks of chemo and radiation. The toll of just three weeks – both mentally and physically – is shocking. The last day of radiation and chemo was…difficult. And now, we wait.

Waiting is always its own special hell. Because we form expectations of what might happen: too high an expectation and you’re dashed when reality falls short; too low, and you spend more time in anxiety and distress than necessary.

My whole life, I’ve always wondered the meaning of Hope being the last thing to escape Pandora’s Box.

Was Hope last out of the box because it’s the one bulwark against all of the evil of the world? Or was Hope last because is it the worst of the worst?

Because all emotional pain and joy happens in that gap between what you hope and what you actually get.

  • If you expect to make $20,000 a year and you make $100,000, that $80,000 gap is joy.
  • If you expect to make $100,000 a year and you make $20,000, that $80,000 gap is pain.

For us, we remain hopeful. And we wait to find out what is felicitous and what is not.

Her: (waking) What do we have to do today?
Me: Rest.

\’

Location: with our son
Mood: hoping
Music: Hold on, I feel like you could shine
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18 thoughts on “Felicitous”

  1. Love your posts. Yes, rest it is. She’s fought the fight and worked so hard. Rest is the best medicine to regain the strength she needs and just assure Alison it’s part of the fight. I know with mom, she felt so tired after sessions and then felt bad for laying around doing “nothing.” But she was doing something….fighting back. XOXO

    1. I think people with cancer are always fighting; she says the same but I tell her that the rest is a crucial part of it all.

  2. Hi logan. I hope Alison is recovering well from surgery and chemo. I know the toll that has taken on her body has been tremendous. I read your previous post and I was wondering if you have tried contacting Duke university directly and speaking with the staff there regarding possible inclusion of Alison in their PVSRIPO (polio virus) trials. I am sure you have already looked into this and as I understand right now Alison is not eligible due to her weakened health and recent chemo. Perhaps in a month or so if she has recovered enough physically she may be able to be enrolled.

    https://clinicaltrials.gov/ct2/show/record/NCT01491893?term=Nct01491893&rank=1

    1. Yup, unfortunately, she’s not eligible for any of the clinical trials at Duke – we spoke to Dr. Friedman, who was just really nice. There wasn’t any clinical trial for us at the time. Hopefully, something will open up somewhere.

  3. There are a couple of Facebook groups that may be helpful to the both of you. One is for caregivers and the other is only for people suffering from the disease. The caregivers one can get pretty depressing and people tend to share a lot of misinformation, but it can be a good resource every now and then. One is GBM Brain Tumors and the other for caregivers is Glioblastoma Support Group.

    1. Thanks, Matt. I looked into some of the groups on Facebook but noticed exactly what you did, a lot of misinformation. Trying to keep my information overload to a minimum.

  4. I found your story on YouCaring the other day when I set up an account for my daughter, then your letter to VP Biden came across a glioblastoma listserv. I noted that you are trying alternative treatments. After the standard of care failed for my daughter, we just started using high dose IV Vitamin C and have seen improvements after just 7 treatments (4 treatments per week).

    1. Tanya – While I’m happy to hear from you, I’m so sorry it has to be this way. I hope that you can keep us updated with good news from your daughter. Have you looked into some of the items that Simi mentioned we should be looking into?

      1. We have done a clinical trial at Dana Farber in addition to the standard of care. We have also worked with a naturopath that tested KK’s saliva and prescribed supplements accordingly. We used many things recommended by the cocktail approach. Unfortunately, none of them worked for KK. Now we are doing the IVVC (at a natural healing center) in conjunction with a metronomic antiangiogenic protocol (at Dana Farber). I see improvements already…we will know for sure if this is working in 4 weeks at the next MRI.

  5. Logan, I left you a few comments at the end of your letter to Joe Biden. I hope you will check them. I just looked at your google profile and now I feel even more sympathy for you, just because of our shared career choice. Until I became a full-time homemaker, I was an IP attorney at Weil Gotshal — also mostly trademarks but a smattering of other things too. Alison is lucky to have you; I am sure you are using your God-given brains and advocacy skills to find the right treatment for her. Best wishes to you.

    1. Simi – thanks for all the comments and references! I actually read Dr. Chang’s book and reached out to Jessica already – who is just as nice as nice can be. We’ve been working on getting as many supplements that are effective for her cancer. Chloroquine is a bit harder to get now since it’s not readily available in the US now. She’s also been on a ketogenic diet for a while now.

      Yes, I too have stopped being an IP attorney (also mostly trademarks) as my full time job is taking care of my wife and son now.

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