Finding a cure for cancer via a Facebook post?

After my 5 days of intense chemo last week, things got worse before finally easing up a bit today, though still not doing fully well. Here is what I was experiencing and still do though happily not to the degree described below:

  • Extreme fatigue
  • Lack of motivation often related to the fatigue – for example to even take a walk I don’t have much motivation;
  • Lack of balance – also related to the above. Sometimes I feel like I will fall, though this has fortunately not happened. Especially when I face a staircase – and I have stairs in my apartment – I do so with trepidation and when I go up or down, I latch onto the railing;
  • Getting up out of a chair or from the sofa is WORK! I need to first think about the best way to move, then position myself just right and use both hands to push up whereas in the past, I didn’t even think about it – I just did it effortlessly;
  • Peeing is still a struggle and after I pee I usually have to return to the toilet within minutes since I have not fully emptied myself. This is most bothersome during the night when it disturbs my sleep;
  • Loss of appetite – not fully, but not up to normal;
  • Swelling of left eye especially when I get up in the morning, that eye has been very puffy;
  • Constipation though that is much alleviated thanks to new drugs I’m taking;
  • Posture: I am bent over like an old man, both legs and back, when normally I assume my dancer’s stance;
  • Lack of coordination is severe, very similar to the side effects in Spain when all the process started, i.e. when getting out of bed, or changing position, it takes a while to coordinate well: I need to stop and think through how to move properly. I lean somewhat towards my right side;
  • Incontinence: Sunday morning, in the kitchen, I peed on myself.

 

The good news is that all of the above is slowly letting up. I went to Sloan earlier than planned for an evaluation and they helped by changing/adding some meds and I will see them again next Monday to re-evaluate.

 

I am in the city this week. Antonio came back early from his work trip given my reaction to the chemo and has been helping me so much! My dear friend Mark Burr from Peace Corps days flew in from Montana and spent a few days and just seeing him lifted my spirits. We went to lunch with Susan Locke and to the theater to see The Humans. Don spent some time with me as well and brought over his special and delicious brew of concentrated ginger peach tea. The ginger especially is good for an upset stomach.

 

Today, I had an appointment with my General Practitioner, Dr. Kim. On the way there, walking with Mark, I all of a sudden broke out and was running. I was aware that I was indeed running, but it was strange because I had not consciously decided to run – it just happened. Mark asked me if I wanted to run and I said “No, please stop me!” so he stepped in front and stopped me with a gentle bear hug! Very surreal experience.

 

One of my friends posted this on Facebook:

 

Today more than ever I want the cure for cancer!! There is a personal reason to ask everyone to put this message in your status for at least 1 hour. I know who will post it! Think of someone you love who had cancer or is at this moment fighting. My wish is that in 2016 the cure is found. I hope to see this on the status of all my friends. Don’t share, but copy and paste.

 

I responded:

 

While I agree with the sentiment I don’t quite understand how this contributes to finding a cure. And I say that as someone in the midst of cancer treatment. Help me to understand please.

 

She responded thoughtfully:

 

First of all, and because we haven’t communicated directly since your diagnosis. Please know that I’m so sorry that you’re going through this health crisis. I was originally told by (a mutual friend), because I asked her about something she posted on FB when you were first hospitalised. But she also said that you had indicated that you didn’t want to be inundated with comments/attention/drama, so I waited. I was so pleased to learn about your blog, and am still so pleased that you are surrounded by good friends and have a good medical team.

 

I saw your comment on that rather trite cancer posting I made the other day, and I thought it best to share with you the reasons that I posted it. The person that I responded to is an old family friend … and my sister’s best friend. She is a 5-year breast cancer survivor, who was diagnosed with pancreatic cancer about 6 months ago. On top of this, her husband has recently been diagnosed with prostate cancer. It’s not looking good for her, but she and her husband and many friends, including my sister, have become great advocates in our state for awareness and money-raising efforts around pancreatic cancer. So anyway, when I saw that she had posted this thing, I automatically re-posted it, in some sort of solidarity with her. I didn’t stop to think that it might be offensive to others. I certainly should have thought more about that. All of this said, I don’t think that it is entirely negative. So many people in my home part of the world don’t know enough about any particular kind of cancer, or even cancer more generally. I don’t think this thing was really intended as a fundraising effort for the “cure”, but it might not hurt such efforts. So I do want to apologize if it offended you, it wasn’t intended to do that of course, but I acknowledge that it is trite and evidently trendy given how many have re-posted. I think that you’re correct that these FB appeals often indicate that the person that posts just wants to be seen as big hearted or activist or something like that…but in this case, no one in my family or our friend with cancer whose post we all reacted to fits that description.

 

Let me say that this friend is an amazing, intelligent, sensitive woman who works in global HIV efforts (that’s how we met) and I love her! So I know she meant the best sincerely and I was not offended. That said, I still maintain that when I see posts like this about cancer or any other cause, I just think it’s an easy way out of really facing what it would take to make a difference about the issue, be it health, violence, poverty or whatever. I tend to ignore those posts and move on, but chose to ask what was behind the post from this most thoughtful of people. Other thoughts?

 

Monday, yet another doctor appointment, then next week, 2 more on Tuesday and Wednesday an appointment each day. I will take the weekend to head to Fire Island for a break from all of this madness and will hope and work to make more progress each day!

 

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18 thoughts on “Finding a cure for cancer via a Facebook post?

  1. I wish there was something lofty or helpful to lift your spirits, Alan. Just know that we are following your blog closely and wishing you a speedy and complete recovery. We hope you enjoy your time on Fire Island...and that it's a tonic for you. Love from Pennsylvania, Jonathan and Ray

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  2. Dear Alan, I hope every day now the effects of the chemo phase out slowly. Enjoy Fire Island, take it very easy and get the needed rest. Sending much Love. Paola.

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  3. i can't believe this is happening !
    i wish you full and speedy recovery !!!
    have a nice weekend,
    db

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  4. I love you Alan
    So good to FaceTime you and Mark as if the three of us were together. Our love for each other never changes

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  5. Hola, Alan. Mis abrazos carinosos y mis oraciones diarias por ti. Fuerza y fe en esta prueba tan grande!!!

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  6. This honestly sounds quite awful UA. Your description of running without conscious intention gave me such a glimpse into to how it must feel to have your self so hijacked by your physical body (on top of the exhaustion!). But I am so relieved to hear that these symptoms were slowing and hope by now they are much improved. I am so amazed by your strength - how you are still able to be at a cafe with friends, and taking in theater during such a difficult week. I love you and am thinking of you so often. Hope to catch up by phone soon:)
    Xoxo

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  7. A note to Alan's loving and loyal friends around the world. I hope you find this note, as I know you are concerned about how Alan is faring. He has a new blog post that should be posted within a day or so. I will give you a brief update. Alan is back in the hospital having had a recurrence of weakness on his left side. It appears that there is a tumor in the same part of the brain that caused the initial problem. He is considering further surgery and will consult with the Memorial Sloan Kettering Hospital in the next few days. Please feel free to email him, but he may not immediately reply. If you want to talk to him via phone, I recommend you not do so unless he indicates that it is OK to call. We are all on Alan's team - better yet, we are all his extended family, and this means the world to him.

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  8. P.S. If Alan does not reply to emails, particularly requests for updates, please be understanding.
    Susan

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