Hi everyone! No big news to report from yesterday. Just a lot of rest and some more walking. Hopefully, her digestive system will start to wake up in the next couple days so she can start on ice chips and then sips of water.
One of our best friends was also getting treated in the hospital this week. She came by and really helped to brighten Jen’s day, thank you S! And thanks to everyone who is sending love from near and far.
I’ll try to post again tomorrow. – David
For those of you who have been with us since the beginning 5+ years ago, you know that it has been (and hopefully will be) quite a long journey. Yesterday was a very good day on that winding road.
Yesterday morning, I arrived at the hospital to find Jen walking around with her nurse and IV poll. Yes, it was a very slow walk, but just 1 day after major surgery, that’s amazing! She is still itchy (I think from the anesthesia), in some pain (getting pain meds, but can’t take too much since that would mask any issues we need to be aware of), and not able to eat or drink anything until her digestive system starts to wake up (hopefully in the next few days). But overall it was a very good day!
Please keep the good thoughts coming via comments on this blog, drawings from your kids, etc. Jen reads them all, and they give her a lot of strength. Voice mails and emails are good too, but please be specific that you’re not expecting her to reply (she needs to focus on rest and recovery).
Some of you asked for a little more info about the surgery. They removed the main tumor and one other small nodule in the same general area as well. To do so, they removed about 12 inches of both her small intestine and large intestine, and then connected both back up. As you could tell from the pictures Jen posted of her belly before surgery, the tumor was very large. It was sort of in the shape of the top of a mushroom so one of the doctors said 2 footballs side-by-side is more accurate than the soccer ball I mentioned below. Said it probably weighed 5 to 10 pounds (you can imagine the discomfort Jen was feeling). He actually called it “ginormous” — I didn’t realize that was a medical term!
They sent the tissue off to the lab for analysis, which might give us some data to help determine where we go from here. But for now, we’re psyched the surgery went well, and we’re focused on getting a little stronger each day. Thanks for all your support! – DL
Hi. Thanks for all your thoughts, prayers, poems, limericks, and songs – they seem to have helped! I left the hospital late last night, and the doctors were pleased with how the surgery went. They took a huge tumor out of Jen (more info later, but it was basically the size of a soccer ball). They did a bunch of other stuff to put her all back together so she’s in a lot of pain, but doing ok. I’m heading back to the hospital now. Will try to post again tonight. – DL
Jen didn’t go into the operating room until around 4pm so while I’ll try to post an update late tonight, it will more likely be tomorrow. Thanks for all your kind words and thoughts! They definitely helped Jen get through a tough night and put her in the right frame of mind for surgery today. Sending lots of love back to all of you. – Dave
The ultimate irony is that it started to fall out these past few days AFTER we found out that this chemo also isn’t working. As I watched my hair fall out in clumps these past few days, and went to have it shaved off yesterday, I realized that I lost 10 months of progress due to 1 lousy 3-day chemo infusion that didn’t even work! I am back at square one…starting over (with a 3rd type of treatment that doesn’t have hair loss as a side effect.) 
I had a really good hospital stay. I know that sounds odd but I really can’t complain. I had:
• A nice new room with a really sweet, considerate roommate (if you can’t get a single room, this is the next best thing)
• Great nurses who were young and fun and very caring
• A relaxing foot massage on day $3 of my treatment
• A wonderful stream of visitors who kept me entertained and preoccupied
• Good food (aka I had visitors bring me all of my meals so I didn’t have to eat hospital food)
More importantly, I didn’t have:
• Bad side effects from the chemo (I had very little nausea or night sweats)
• A lot of distractions at night (I managed to sleep OK despite the crazy steroids I was on)
There was definitely a sense of déjà vu being in the hospital 4.5 years later for a similar treatment.
The highlight of the 3-day stay was that I had an allergic reaction to one of the new chemo drugs I was being given. I am being a bit sarcastic because although it was definitely a “highlight”, I would have gladly chosen to live without this experience.
I was forewarned that about 25% of patients receiving this drug get an intense allergic reaction within 10 minutes of the drug being administered. In most instances the nurses will stop the drug and try again in an hour…90% of the time the drug is tolerated the 2nd time around. There is a very intellectual medical reason for this that I didn’t understand but it basically boils down to the fact that your body needs to get accustomed to it.
I was given the drug and it took only 3 drops of the drug for me to get really sweaty and dizzy, feel my throat closing and have my face turn bright red (Dave claims my face was rosier than the Vitamin Water I was drinking). The nurses and Dr’s were ready for this reaction and immediately gave me shots and oxygen, which brought me to a comfortable state within 1-2 minutes. I must say that it was the scariest moment I have had on my cancer journey to date. When the nurse asked me what it felt like, I told her “I felt like an elephant was on my chest and if you hadn’t helped me, I would have died within 30 seconds”.
I got really nervous when they told me that despite my allergic reaction, we had to try again in an hour. Luckily I didn’t have the reaction the second time and the treatments went without a hitch. I would be lying if I didn’t admit that I am going to be very nervous when they give me the drug again in 3 weeks.
I got home on Wednesday night around 6 and have been doing pretty well since. I am loving March Madness and watching a ton of games. Luckily, I have very few side effects…a bit of nausea and extreme fatigue (I have to take a nap every day) but that’s it. I have managed to go to the gym, see friends, do errands etc. I am just taking it day by day as I try to determine what this new round of chemo will be like for me.
The side effect that I tend to have the most is called Chemo Brain. It basically means that you feel like you are in a haze for the few days after chemo. It’s hard to really focus and sometimes you have a hard time expressing yourself coherently. I guess this is the best side effect to have in that it doesn’t hurt you; it ‘s just somewhat annoying. I tend to be about half as productive and much more “Zen”. When I started exhibiting these symptoms on Thursday Dave remarked, “Oh, I forgot about this side effect and how much I like it. It’s the kindler, gentler version of the Jen I love!” I would have smacked him but my brain was too foggy!
I will write again soon. I have a lot of “deep thoughts” to share once I get over my chemo brain!
I am home from the hospital after my first 3 day stint. I will post a full recap in the next few days. In the meantime, I wanted to post this insightful article from a NY Times journalist who often writes about his personal experience with cancer. I am not sure if I agree with his tone and POV throughout the entire article but I do agree with him that rather than a battle, cancer feels a bit like a part of life that must be accepted if you are a chronic relapser. Enjoy!
March 15, 2010, 4:47 PM
By DANA JENNINGS
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.
It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.
But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.
I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.
We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.
As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.
It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.
Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.
Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.
Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.
And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.
I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.
The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”
I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.
And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.
Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.
Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.
Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.
Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.
So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.