Hi Hubskiers! In October 2011 I began having breathing troubles and went to the doctor for what I thought would be a prescription for antibodies. Instead it was a start of an experience that continues to transform how I see the world and think about life. A few of you know I've been fighting lymph cancer now for 18 months. I went into remission in March 2012. After a long recovery I was finally better in January 2013, but only for a disappointingly short time. My cancer is back and I'm staring chemo again.
During the first 5 months of my disease I ran a blog, very detailed, about my experiences. I've just opened up the blog again, and the whole story is there from the beginning. Maybe you or someone you know with cancer would find this helpful. (I'm anticipating a much milder treatment this time around than the first time, so I can't promise anything dramatic. I will promise the truth, neither sweetened nor made to seem worse that it is.)
You are certainly welcome to join me on this voyage! It makes me feel better sharing. You are also welcome to comment on the blog, or here on Hubski. I'd love to hear about your experiences too!
I have only joined recently, but I think it's very cool that you're blogging about your experience. Though it's so common, until I read a book on the history of cancer treatment, I had no idea that I had no idea about what cancer, not to mention different cancers entailed, or why its treatment is so incredibly difficult. I am sorry to hear that you are sick after being well. I really hope that it responds well to treatment. I have a question, if you don't mind. My aunt has been diagnosed with cancer. So far, she has several masses in her brain and it has metastasized and spread to several of her major organs. She can no longer speak, is bedridden and has lost control of her bodily functions. As if that weren't bad enough, her husband has made the decision to keep the test results from her. In the country they live in, this is somehow OK with the doctors. My uncle is in full-denial as is one of his sons, my cousin. The other son is doing his best, but he's the younger brother and we come from a culture with an antiquated hierarchy. They are currently looking for alternative cures via homeopathic medicine. They've always been a hard luck family and have had to take out loans from the rest of the family and now my parents, my other uncle and aunt are chipping in to get a full-time nurse for her. My sick aunt has to know that something is seriously wrong. My extended family, led by my father (who is the eldest) is trying to delicately convince my uncle that he needs to accept that his wife has cancer and that she has the right to know what's wrong with her. My father is also trying to get my uncle ready for when she dies, as it seems she will, soon. I know that everyone is different, but not everyone gets cancer. Given what you know from yours, would you want to know exactly what is wrong? I really want to help my aunt as I love her, but like the rest of my extended family I feel like I can't tell my uncle what to do for his wife, especially not from thousands of miles away, though I feel like it's the thing to do.
Wow, I'm sure you uncle is acting out of love, that he feels it's better that she doesn't lose hope and if she knew she may give up. This I can understand. But in her condition yes she must know the end is near. I think she should know. I think it's best to have a clear picture of what is going on and what is happening. That doesn't mean there is no hope, but she will be able to prepare herself for things that can happen. Everyone I know who has died from cancer has been grateful to have had a chance to say what they need to say and do what they need to do before they go. Not everyone gets that chance, and having all this in order really can bring peace of mind. I know your aunt can't communicate well, but maybe there's some things she'd like to write to people, some final wishes of love she's like to remembered by. I don't know the best way to approach this, but he may need to hear it from your whole family. My best wishes to you and your family.
Thanks for your reply and your wishes. That's essentially how we feel about it too. I can't help but feel that if this course continues, it will be a source of regret and bitterness for a long, long time. Given the chance, I'd like to share with my uncle what little I've seen of your blog. It's pretty clear that despite the support my family is trying to show, he feels very, very alone and I don't blame him. My aunt must feel the same. Maybe an account of someone going through cancer who is determined to live might give them some perspective. Take care Mike.
Mike I hope the odds start to tilt in your favor soon. I started reading your blog. Great stuff. I should have read it earlier. I think I'll get to more of it soon. I'm off to bed though. Tired still from last week's regimen of temozolomide as I treat my grade 2/3 glioma (brain cancer). Temozolomide is more of a nuisance compared to what you've been hitting your body with. You are one bad mamma-jamma. Take care man. There are folks round the world pulling for you.
Mark told me a while back about your cancer Jeff. How is that going? Is it affecting neural functions? That's scary shit messing with your brain. I've got about 20 tumors throughout my chest and abdomen, and I think I'd rather have all those scattered around down there than have just one up in my skull! It's 4 am, I've been up all night, totally raging on the first half of chemo this afternoon. The other dose tomorrow. So far, this treatment isn't too bad, but I feel new and bad things happening inside of me right now, so I'm bracing for it...
Thanks for asking. Things are going well. My stuff was/is in the right anterior temporal lobe. Fortunately, not an area dedicated to one particular function, like language or hubski typinggggggggggg. Well, at least maybe not my sense of humor function. I was fortunate to have an excellent surgical outcome. Nothing visible is left in follow-up MRI's. So far, outside of the radiation+chemotherapy last summer plus twelve rounds of adjuvant chemotherapy side effects, my neurological functions are completely normal. During treatment week I basically get the feeling of a mild hangover all week long as I ingest my five days of poison pills. I can still work while on chemo. I just need to be careful to eat lots of protein, keep watch to make sure I'm getting the proper calories, sleep a ton extra, and then lay low for the weekend.
I'm stuck with my bad brain cells, but I don't know if I'd wanna trade it for your chemo treatment alone! It has been completely surprising to see how resilient the human brain is. I expect the rest of your body is at least as resilient.
Who needs the drama from the first sentence when you've got the honesty in the second. Your blog was one of the most powerful pieces of writing I've ever read. I don't know if part of that is because we know each other or not, but one doesn't need to be ill to benefit immensely from your writing, if only from the perspective it offers. We are, after all, all mortal. Thoughts are with you as always, and it's worth mentioning that what's most admirable (to me anyway) is the stuff you've been kicking ass on since March last year in between rounds of chemo. Archmage dude.(I'm anticipating a much milder treatment this time around than the first time, so I can't promise anything dramatic. I will promise the truth, neither sweetened nor made to seem worse that it is.)
Thanks Ed. You inspired to read over my entries during the recovery. That was a long tough period as well, one I kept largely to myself. This round of chemo was going great, until this evening. It just jumped up and kicked me hard, right out of the blue. So, yay, there's still some drama left. I'm glad I'm getting a "high quality" experience!
I think it's so cool that you had those entries to reread. I was/am fascinated by the 'memory' blocks and time distortion that was in play. Not being able to predict that, it's just great that you had the foresight to keep such a journal, and do so in such a candid (with yourself) fashion. If a round of chemo happens in a forest and nobody is around to remember the details, did they really happen? BTW, giraffe = my favorite animal, but unfortunately for you yes, if you had a giraffe super power it would probably have to be a stretchy neck. Super powers transposed from creatures always involve the most dominant characteristic of that creature according to every sci-fi book ever written anytime anywhere.
The journal was really good for piecing together lost chunks of time. There are so many holes in my memory from that year, it's distressing especially for a person who values his mind above all else. I fear you may be correct with the giraffe superpower. In my dream I was trying to come up with an alternate power, and was getting settled into "glowy fur" when the dream shifted to the next scene. The glow was the golden light of the savannah sunset. Yeah, guess I'd rather have super-stretchy neck than glowy fur.