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The Linn Blog

The Linn Blog

April 10, 2010

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March 28, 2010

Second Time Around - In-Patient Chemo Begins


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!

March 25, 2010

With Cancer, Let’s Face It: Words Are Inadequate



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.

March 24, 2010

Is it In Me?



We received the results of my scan last week and the data was mixed. The tumor has partially responded to the chemo I have been on for the last 6 weeks. The doctors have seen some progress but not as much as they had hoped. So, both Dr. Maki and Dr. Singer are adjusting their course of action. The good news is that they have another protocol that they believe will work better. It is similar to the regimen I was on when I started my first course of chemo 4+ years ago. This treatment requires me to be in the hospital for 3 days at a time every 3 weeks. I had the option of trying to receive the treatment from the out-patient clinic but we decided since the protocol lasts about 9 hours a day, the back and forth travel would actually be more tiring than Just "sucking it up" and staying at Spa Memorial for a few days at a time. As many of you know, by now I know my way around there and it's not that bad. Foot massages, music therapy, wi-fi and Netflix on demand make it a fairly cushy stay!

So, after a few days of mental regrouping and changing my calendar around, I entered the hospital this past Monday for Round 1. It makes sense that this round began the day after my 39th birthday. For some reason, my cancer milestones always seem to coincide with holidays. My first surgery was right on New Year's eve, my chemo regimens have fallen on Memorial Day, Labor day, Christmas and Halloween...at least this time I was able to enjoy a beautiful sunny day for my birthday before I started.

I went to the gym the morning before I came into the hospital and had a great workout and got pumped up to crush this tumor for once and for all. The last song I listened to on my ipod before I left the gym had the lyrics "I'm letting you go, I"m saying goodbye", so I took that as a good omen.

The words that have kept on flashing through my mind these past days have been the Gatorade Tagline, "Is it In You?" Do I really have the energy and strength to go through another round of such aggressive chemotherapy? In preparation, I pulled out the copious notes I had recorded during August-December 2005 when I last received this type of treatment. I was such an eager beaver! I had written down the specific symptoms and side effects I had experienced through all 21 days of each cycle. I even recorded with wonder, zeal and a bit of disgust that due to the major steroids I had been given, I was prone to "3 cheeseburger meals" and having a 4th meal quite often sometimes between 2-4AM when I had insomnia and couldn't sleep. Oh, wonderful!

Part of me looked back on my history with a sense of admiration. Here I was, such a "newbie" in the process and I approached this chemo with 100% determination. I don't remember the side effects to have been that major but when I read what was in my journal, the memories flooded back and I realized that I had actually gone through a lot. I was so positive and so focused that I had minimized the side effects in my mind. The goal was quite simple...get through this protocol and be done! My spirit could not be deterred.

These past few days I kept on thinking, "Do I have it in me" to do this again with the same level of courage and determination as I did 4 years ago? Should I 'throw out' my past journals and enter this chemo with the same naivete and wonder that I had 4 years ago or should I use that data to "plan" for what I will likely experience over the next few months? I realized that sometimes ignorance can be bliss! Knowing too much can create a "self fulfilling prophecy" of symptoms when I may feel very different this time around (hopefully even better).

After some consideration, I've decided to live this round with one foot in the past one foot in the future. I will use the knowledge I gained from 4 years ago to be prepared for any symptom I might get. My family and I have already loaded up on the creams, the nausea pills and the cheeseburgers to make sure I am ready if I experience any of the past symptoms or urges. And I have also very much embraced this round as a "newbie", really hoping that I will wake up each day and depending on how I feel, I will plan accordingly. I will only let my past knowledge act as an advantage...it will not deter me from bringing 100% determination and courage to this battle as well.

I will write again after I get out of the hospital later this week.

March 17, 2010

I am so sorry I have been out of touch

I truly apologize for not writing in over a month! BELIEVE ME, it is not because I don't have a lot to say. I have actually been writing down all of the topics I have wanted to write about so there is a lot of new content coming shortly.

My blog is transitioning over to a new back-end system (terrifying as I am not an IT person) and I need to figure this out before i post anything more because I don't want to lose the new entries.

Within the next week, I promise you will get a lot more updates...Cycle for Survival 2010 pictures, details about my latest journey with battle #5 etc. Definitely a "must read" :)

In the meantime, I am attaching a link to an amazingly informative and inspiring article that Self Magazine wrote about rare cancers in their March issue (on newsstands now...Hayden Panatierre is on the cover). The article showcases how the dollars raised by Cycle for Survival are making huge strides in rare cancer research. I am very proud of all that we do.

http://www.self.com/health/2010/03/rare-cancers

Stay tuned for more.
Love,
Jen

February 10, 2010

A perfect Partnership

Check out this entertaining piece that WPIX created!

 

February 03, 2010

The Highest of Highs and the Lowest of Lows

A wise person once said to me "you can only appreciate the highest of highs if you experience the lowest of lows." I always think about that expression when I am experiencing either extreme of the spectrum: If I am having a particularly tough time I realize that I have experienced so much joy and this rough patch is sure to pass. Or, when I am having a really euphoric experience I truly soak it in because I know that it's only a matter of time until a low comes along. It's not being optimistic or pessimistic, it's just the way life works out.

This roller coaster of feelings could not have been more true this past week.

I started the week off so high as we were leading up to the Cycle for Survival event. We had great press appearances on CBS, WPIX, ABC Radio and NBC. We also had the opportunity to ring the NYSE bell which was a truly memorable experience. All signs pointed that Cycle for Survival NY 2010 was going to be bigger and better than ever. I was on a real high...despite these nagging stomach pains.


I visited my oncologist on Friday only to find out that those stomach pains are due to a fast growing 4" tumor in my abdominal area. The good news is that it hasn't spread and seems very similar to my other tumors. The bad news is that it is growing rather quickly so I need to start chemo immediately...5 days from the diagnosis. I needed to cancel my trip to Costa Rica that I was so looking forward to. Wow, what a low....

And then Cycle for Survival weekend was so amazing it was impossible to put into words. I am embedding a video here so you can get a sense of the energy and I promise to write in a lot more detail after the Chicago event. It was a "once in a lifetime" experience that we are fortunate to experience annually. We have raised $2.3MM and counting. I told everyone that I will walk into that chemo suite on Tuesday with thousands of supporters behind me and cancer doesn't have a chance. The best high by far!

video

I slept all day Monday to get ready for Tuesday chemo. I worked out on Tuesday AM and got totally pumped up for my 5th battle against this disease. One can't lose the irony that my 5th battle with cancer started on Ground Hog Day (I do feel like my life is a lot like the movie at times..."Haven't I done this before?" "What behavior can I change to get a different outcome?")!
I played songs like Tub Thumping, Don't Stop Believin', Stronger and the Theme from Rocky to get ready and I felt good. Despite the fact that I was starting chemo again, I was on a high...

Now it's Wednesday...the day after chemo and I feel bad. Nauseau and stomach pains for most the day make it hard to eat and hard to do much beyond write emails and watch TV (Thank goodness for Law & Order!). I am hoping that this will go away soon and I will tolerate the chemo easier like I have other cocktails in the past. Let's hope this low passes quickly.

Dave and I are off to Chicago tomorrow for the Cycle for Survival event on Saturday. I can't believe that we have expanded into Dave's home town! It gives me great pride to know that our gospel is getting so much awareness and support around the world.

I promise to write a lot more when I return. Thank you for being on Team Jen!