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Posted 5:00PM by David Linn

Hi Friends and Family!

Our star patient is recovering very well from surgery. Jen is in some pain and is very tired, but overall she is doing great. She’s been resting most of the day, but she did get up for 2 slow walks today with her IV.

Some of you asked about visitors. Yes, Jen is up for visitors although we all need to make sure she is getting enough rest. She is open to visitors this week at the hospital, but she is particulary interested in visitors next week when she’ll likely be at home with a bit more energy and mobility.

You can reach me by email or cell phone, or you may be able to reach Jen on her cell phone. Those are better options than the room phone since it doesn’t have caller ID, making it tough for me to screen your calls 🙂

Seriously, feel free to call either of us at any point, but I’ll try to keep adding updates to this site.

– Dave

10:30PM Posted by David Linn

Today was another stressful, but happy day in our fight against cancer.

This morning, Jen blasted a bunch of Rocky music to get in the right frame of mind. There’s nothing like “Eye of the Tiger” to start the day off right! Then, as we walked out of our apartment, Jen saw that our neighbors had posted an inspirational sign on their door that said, “WE HATE TUMORS TOO!” Jen was now definitely ready for her surgery. Thanks, Nick and Erica. The sign was perfect.

As some of you know, the surgery is not an easy thing to go through. Jen wasn’t able to eat for almost 48 hours, and she had to wait at the hospital for about 6 hours before she was brought into the operating room.

However, I’m very happy to report that the surgery went well. The doctors removed the two tumors in her abdomen area. They did not see any other areas of concern.

Jen is very tired and in quite a bit of pain, but she is doing great. She may be up for visitors tomorrow, I’m not sure. She is at Memorial Sloan Kettering Cancer Center, 1275 York Ave, Room 1501A. As always, call first since rest and recovery are very important right now.

This was Jen’s 3rd major surgery. Her first words after she comes out of surgery still a bit drugged-up are always very memorable. The funniest I think was after her first surgery when she said to her father, “Dad, it’s a good thing I got him to marry me when I did because now I’m damaged goods.” Today was pretty funny too. She looked up at me and said, “We need to stop meeting like this.”

Yes, we definitely do. As Jen mentioned in previous posts, there is still a long, long road ahead. However, today was definitely a good day. I know Jen is looking forward to hearing from all of you as she recovers over the next several weeks. Thanks for all your love and support!

– Dave

Dave and I found out this past Thursday that I will be having my third surgery this coming Monday, July 16th. The surgery was always expected but I thought it would be later on (around September). The good news is that the chemo is working really well and the reason for the surgery being pushed up is because my surgeon is thinking that if we wait much longer, the tumors will be completely gone and he won’t be able to see and “study” anything.

I told my team of Doctors that I wanted to do the most aggressive thing possible…and that is surgery.

So, overall good news but the short notice was totally unexpected! I rushed back to the office Thursday afternoon to make the most of the 1 day I had to get things set. I will likely be out of work for at least 3 weeks. My Dr’s are confident that this surgery will be fairly straightforward (like the last one). I will most likely be at MSKCC for 5-7 days and then home recuperating for a few weeks.

Dave and I went out to dinner last night to celebrate the “last supper” (since they will have to remove some of my colon/digestive tract, I won’t be able to eat much for a while). As opposed to a lavish meal, I opted for a big salad and LOTS OF frozen yogurt…two things that will be too harsh on my system to be eaten for a long time. The Dr’s. put you on a low fat, low fiber diet for a few weeks until they are certain your system is working well.

As always, I try to find the good in things. I came up with a list of things that make the surgery tolerable for me and also provide some laughs:

• I’ll lose a few pounds – surgery is like a mandatory diet. Sometimes it’s actually easier to have your stomach shut down for a week or so than to make yourself eat carrots and exercise

• I’ll be able to get a foot massage – I remember when I went through chemo, they had nurses visiting you to provide music therapy and reflexology. Once I am feeling better, I will absolutely take advantage of the “Spa” services

• I’ll brush up on my pop culture knowledge – I have already designated the bedroom TIVO to be “my TIVO” during recuperation. I have programmed all the reality TV one can possibly find. I also have stocked up on all of the trashy magazines so I will be able to have a thorough, well-researched discussion about whether Nicole Richie really is pregnant and other important news stories. It gives me comfort that I will be killing brain cells as well as cancer cells!

• I’ll try to enjoy the nice weather – my last two surgeries took place in the dead of winter (December and January). At least this time, if I am feeling better, I can go for a walk or sit outside

• I can connect with friends and family – it is often hard to arrange time to see people. However, when you’re in the hospital or recovering at home, you are not the one saying “that day doesn’t work for me”

Now let’s just hope “three times a charm” as opposed to “three strikes you’re out!”

I welcome phone calls and visitors (just call me ahead of time to make sure I am doing OK). The best way to reach me in the hospital is to call me or Dave on our cell phones (I will most likely have a roommate and don’t want to disturb them with the phone ringing all of the time).

Dave will also be a guest blogger while I am out of touch for the week and keep you posted on how I am doing.

Thanks for checking in with us!

The last few weeks I have been very sad. Although I try to put on a happy face most of the time, it would be unrealistic for me to be cheerful all of the time. Dave and I have made it our intention to not give in to cancer. We refuse to change our lives because of this horrible disease. We go to work, we socialize with friends and we get chemo once a week. It has just become part of our lives…something that we need to fit in to our busy schedules. Although we prioritize my health, the minute we begin to accommodate it too much, it means that the cancer has won…and we refuse to let that happen.

However, living our lives this way does not mean that there aren’t moments or days that we are very in touch with how much it SUCKS. How much I HATE the fact that every Friday afternoon I have to show up for chemo. How much I HATE that the drugs’ side effects have made me bald and bloated. How much I HATE that when other people are taking summer Fridays to play golf or go to the beach, I will often have a medical test I can’t miss. I don’t show my anger towards this disease too much but it is very real. And stopping my treatments is not an option.

The irony of this whole situation is that I am kicking cancer’s ass for the 2^nd time. My latest CT scan revealed that the tumors have dramatically decreased in size (in fact one isn’t even visible any more). Apparently I have again defied odds and responded in the top 5% of patients with this disease. I can’t help thinking that I SHOULD be happy about this. I SHOULD be celebrating that I’ve avoided death for a 2^nd time. I SHOULD be even more willing and ready to face the treatments ahead because the fear of how the tumors would respond this second time around is somewhat behind us. But this is not how I feel.

I realize that in the grand scheme, I am extremely lucky. Isn’t it great that the biggest thing I have to worry about is some minor side effects from the chemo? But, in my world, it is far from over. Perhaps we can stop worrying a bit but the Dr. told me that I face up to another year of chemotherapy to increase my odds of the cancer not returning. And because I will need so much more chemotherapy in the future, I need to get a mediport which is a medical device that is inserted near your collarbone so that it is easier to administer chemotherapy (after 10+ months of chemotherapy, most of my veins have hardened making the past few months of chemo very hard…on average, I am pricked 3 times before the nurses can find a good vein). This device makes chemo easier but it is cosmetically unattractive (looks like a bump under your skin) and makes you realize what you are dealing with every time you look in the mirror.

So, while the news is “good”, I am more aware than ever of how much longer I will have to actively deal with this. And some days, I just don’t want to anymore.

This is where all of you can help me. I feel like I have not done a very good job this time around communicating what I need. When I relapsed in February, I wanted very much to believe that the 2^nd time around would be easier than the first. With a new job and an increased understanding of the disease, Dave and I wouldn’t even really notice that we had to deal with it. But I am quickly learning that the 2^nd time around is not easier at all. In fact, the novelty has worn off and it is much harder. Physically, I am feeling fine. Emotionally, I need more support.

I’d like to think that people have not been reaching out as much this time around because they have been respectful of my feelings. They don’t want to say the wrong thing or make more out of the situation than Dave and I originally communicated. Well, the truth is, the situation is bigger and harder than I had imagined.

I miss the letters, the phone calls, the emails, the care packages. I miss the constant messages of support and admiration that made me realize that even though this sucked, I had a ton of people “going through it with me”.

I also think that it is human nature to get “numb” to something if it lingers for a long time. The novelty of my having cancer has worn off on everyone to an extent….Dave and me, our families and our friends. It is often easier for people to assume “she’s OK…she’s been living with it for a few years now” than to accept that every single day is a challenge. It’s easier sometimes not to check in because that makes someone accept and realize that the discomfort or fear they have checking in is something that Dave and I have to live with every day.

After my first bout of cancer, people asked me “what was the hardest part?” and I say, without hesitation, the first six months after I was told I was “cancer-free”. Most people don’t understand this…”Weren’t you happy and relieved? Shouldn’t that be when you were happiest?” Although it is much easier to believe that, the truth is I still felt very raw from the experience and still felt like I was living with the disease…but most people had moved on. It was easier to think “Well, Jen’s good now” then to truly accept that my odds were 50/50 of the cancer coming back and that it was far from over. It was easier to try and “forget” because having to engage in the truth is very painful. And most of us don’t have the energy to deal with this for more than a little while, forget about many years.

Well, the truth is I wish I had the privilege of “forgetting” for a little while but I can’t. The fight is far from over and because the battle lives within my body, I don’t have the option to sit on the sidelines for a little while. I wish I could…it would be much easier that way.

Cancer has made me confront many things…my fears, my insecurities, my perseverance and my strength. I find that throughout this experience, I am pretty happy with how I am dealing with it. However, I am learning certain things about myself that I really don’t like. For one, I am very vain.

Survivorship has been a movement that has gained great momentum over the past few years. The Lance Armstrong Foundation donated over $1million to MSKCC two years ago to kick-start efforts to start examining “survivors” – how they adapt back to life – physically and emotionally. Just the fact that survivorship is now something to focus on shows how far cancer research has progressed. It used to be that most people died of cancer so there was no reason to spend resources thinking about life beyond cancer. Thanks to advances in medicine, this is no longer the case. More and more energy is being put towards understanding how to “track” the health and well-being of survivors 5, 10, 20+ years beyond cancer. What side effects or health issues tend to linger? What are the psychological side effects that cancer introduces to a patient over time? The hope is that this effort will allow oncologists to not only treat a diagnosis but also treat a patient over their lifetime.

Last year, I was asked to be part of the survivorship committee at Memorial Sloan-Kettering Cancer Center. The MSKCC survivorship committee, comprised of cancer survivors that MSKCC has treated, was asked to develop a day that celebrated survivorship. Today, we got to see the fruits of our labors. A day that was beyond inspiring! Today, I proudly took part in Memorial Sloan-Kettering Cancer Center’s Inaugural Rock & Run on the River, an all-day event that celebrated the 11 million survivors of cancer nationwide.

The festivities included a 5K walk/run along the Hudson River in lower Manhattan followed by food, music, activities, and much more. Over 1000 cancer survivors and their “supporters” showed up in full force to make the world take notice.

I was so proud to be associated with this event and to be surrounded by so many stories of inspiration. No matter the age of the person, the type of cancer he/she had, or the number of years since the person had been treated, we all found something in common over which to celebrate – the fact that we are ALIVE!

The Hebrew word “Dayenu” means approximately, “it would have been enough for us” or “it would have sufficed.” The song, sung during Passover, is about being grateful to God for all of the gifts he gave the Jewish people, such as taking them out of slavery, giving them the Torah and Shabat, and had God only given one of those gifts, it would have still been enough. I thought of this word a lot this week. The MSKCC event would have been enough of a highlight to last for a few weeks but Dave and I were fortunate enough to experience two amazing things this week.

Dave plays in a basketball league at the Reebok Club and one of his friends, Mike, was turning 40. His wife decided to throw him a surprise birthday and she rented the basketball court at Madison Square Garden! It was amazing. Dave and his buddies got to dribble down the same court as Patrick Ewing, Bernard King, Walt Frazier and Willis Reed. Sorry Dave, I know you’re turning 35 this coming year but I don’t think I can top that one!

I continue to feel really great. The spinning studio has been my friend and I have gotten lots of workouts in. Besides having some mouth sores and stomach aches, I can’t complain.

Have a great week everyone!

I had my 3^rd CT scan since I started this round of chemo and the great news is that the chemo continues to work. My tumors continue to shrink and I am showing “excellent response” compared to most patients. Of course, this is a huge relief.

I sometimes find that I have to catch myself from saying to the Doctors, “But I showed excellent response last time and you told me I was in the top 5% of responses from all patients and my cancer still came back!” Of course, this type of attitude is not productive. I just need to accept that every exam with an absence of bad news is, in fact, a step in the right direction. According to the Doctors, it doesn’t matter what chemo cocktail I respond to, as long as I respond to one. So, let’s hope the cocktail I am getting every Friday works for good.

I find that the more I learn about cancer, the more I realize how ongoing treatment is a science of “trial and error”. I think we all would like to believe that Doctors know exactly what plan they are putting you on, how long it will last, and the likelihood of survival/recovery. However, despite the fact that I am working with the best oncologists and surgeons in the world, I still often get the answer “we don’t know…we’ll just have to wait and see”. This doesn’t necessarily scare me, it just makes me realize that cancer treatment is not black & white at all…every patient is different and doctors are learning as they go.

A good example of this is the conversation Dave and I had with Dr. Singer, my surgeon, when we met with him last week. He examined my x-rays and we discussed the benefits of my having surgery now or waiting until I had received more chemotherapy. Dave and I were expecting there to be a very scientific answer but the answer we got from my Doctor was “Well, I could do surgery now or I could do surgery a few months from now. The timing of the surgery is really irrelevant. I like my summers and if I were you, I wouldn’t want to have surgery while the weather is nice. So,unless you are not tolerating the chemo well and feel the need for a break, how about if we plan it for end of summer or September?” At first, Dave and I thought the Doctor was kidding. However, he was not. He explained that I am “signed up” for a lot of chemo with surgery somewhere along the process. Having surgery sooner rather than later will not reduce the total amount of treatment I will be receiving. I so appreciate him allowing me to enjoy my summer but it was not the response Dave and I were planning!

So, that being said, it looks like a few more rounds of chemo, surgery in a few months and then perhaps more chemo after surgery (TBD). As long as I continue to feel good, this long range plan doesn’t make me sad. The truth is, once you’ve started and the hair has already fallen out, you might as well keep going until your body tells you to stop.

I continue to feel great! Dave and I spent last weekend going to a sarcoma conference and a gala benefit where we got to meet many medical specialists from around the world. It was both inspiring and sobering. So many people had heard about the success of Spin4Survival which was so great. I continue to realize just how much the $200K+ that we all raised is making a difference in the world for so many. Stay tuned for more news about Spin4Survival II. The video was just completed and it looks great. I am hoping to post it in the next week.

I just finished my 4^th round of chemotherapy on Friday. I am sitting home dealing with the unfortunate side effects that accompany the first few days after my “big dose” treatment. The steroids I used to take would make me jittery and keep me up all night…however, they also prevented nausea. Since I did not like them, my doctor agreed to lower my dosage. However, now, I am up all night feeling nauseous! It’s a trade-off between insomnia and nausea and I chose nausea. At least this only lasts for a few days.

I have been very aware of the fact that I have been acting schizophrenic lately. Don’t worry, all of the treatments have not contributed to giving me a mental disorder. However, I feel like I am often giving mixed signals to people regarding how I want to be treated during this process. Most of the time, I want to be treated “normal” and I don’t want people to dwell on my disease. However, sometimes, I wouldn’t mind a little special treatment. Here are a few examples that bring this predicament to life:

• I get frustrated when Dave and I go out with friends for dinner and he doesn’t notice that I am getting tired and need to go home. But on those nights that he constantly checks in with me, I get annoyed with him.
• I love Gustavo, a personal trainer that helps me stay fit, because he pushes my physically despite my cancer. He doesn’t notice that I don’t have hair and that sometimes I am weak…every time I see him he challenges me to get stronger. However, when he pushes me a bit too far, and tries to get me to do an exercise that I don’t have the strength to do, I get really angry.
• I made such a point of telling my friends and family NOT to check in with me constantly and treat me differently this 2^nd time around but, I have to admit that I miss the phone calls, letters and care packages that people used to send.

I find that my moods and desires can turn on a dime and I can never anticipate how I am going to feel ahead of time. The truth is that I want so much for this disease not to slow me down that sometimes I don’t like to admit to myself that I am not feeling 100% or that I have a valid “excuse” for not feeling strong, or for feeling tired.

I am constantly asking myself, “What’s the Happy Medium?” – what behavior should I exhibit that would be a good compromise between how I really feel and how I wish I was feeling.

So, please bear with me and be patient as I work through these mood swings that I am experiencing. And please check in with me…it is always nice to hear from people who love you.

Since my cancer relapsed in mid-February, there is one question that has repeatedly been asked of Dave and me….and it the question that really drives me crazy. The question is asked in a number of different ways but it comes down to asking how much longer I will need to go through treatment:

• “So, how many more rounds of chemo will you have?”
• “How much longer until you think you’ll have surgery?”
• “When do the doctors think you’ll be done?”

And my answer is always the same: “I DON’T KNOW AND STOP ASKING ME THAT QUESTION!” It reminds me of an episode of The Smurfs (remember them?) when Papa Smurf was taking one of the baby smurfs somewhere and every 2 seconds the baby asked “how much father Papa Smurf?” By the 10^th time, Papa Smurf exploded and said “We’ll get there when we get there!” Well, that is how I feel.

I don’t mean to get so angry. It is a completely rational and appropriate question to ask. Like Dave and me, most of our friends are over-achieving, type-A people who like to have a handle on things. We set a goal and we achieve it. It is hard to live life without control of a situation or a path that outlines how one will get to a specific goal. But unfortunately, in the case of my treatment, we all must live with a certain amount of ambiguity and uncertainty.

Even my Dr’s who are the best in the world don’t know how much longer I will be dealing with this. I get a CT scan every 6 weeks and we look at the results. Every 6 weeks we create a new plan. So, as far as I know, I could have surgery in 3 weeks, 3 months or 3 years. I need to be prepared for anything. And believe me, that is not easy. I think I get angry when people ask me the question because believe me, I wish I knew the answer!

I also think that the question is fundamentally flawed. Asking someone “how much longer?” implies that the current situation is uncomfortable or not good and you want to move beyond it. The truth is, Dave and I are going to be living with this for the rest of our lives. When I finish chemotherapy, I will have surgery. When I finish surgery, I most likely will have more chemotherapy. When I finish more chemotherapy, I will be getting check-ups every 3 months and hope the cancer doesn’t come back. If I can make it through 3-5 years of cancer-free checkups, I need to live with the reality that, for the rest of my life, there is a 10-20% chance the cancer will come back.

Because Dave and I need to live with this reality for the rest of our lives, there is no such thing as “how much longer?” It implies and ending that in our minds doesn’t exist. Many people would say “Oh, what a horrible way to have to live life…never feeling like you are in the clear”. But, Dave and I look at it differently…we accept it. Every day is a new day and we live it to the fullest. We accept my cancer as a chronic illness that doesn’t necessarily have an end…and we adjust.

So please don’t ask me “how much longer” any more. The answer is “for the rest of our lives”. Let’s accept this and truly appreciate every day that we all have together.

I had my first CT Scan this week and the results are very encouraging. Dr. Maki reported that one of my tumors is already considerably smaller and the other one has “shown signs” of reacting to the chemotherapy. Originally, the Dr. thought that the second tumor was attached to my pancreas which might make for a more difficult surgery down the road. However, the second tumor has moved a bit within my abdominal area which is a sign that it may not be attached to an organ which is good news for both my surgeon (easier surgery) and me (easier recovery).

Apparently, only about 50% of the time, Dr’s can see a response to chemotherapy after just six weeks of treatment so this “activity” is very good.

And my prize for responding so well to the chemo…another 6 weeks of chemo! The Dr. told us to be prepared for 3-12 months of chemo so this is not surprising. Although I was hoping he would say I am done!

I left the Dr’s office feeling upbeat but not as excited and happy as I thought I should have been. I guess the hardest part for me during this whole process is to understand what good news really is…I mean, the last time I went through chemo, I could not have responded better (if you remember, the Dr’s said I was in the top 5% of all cases and I asked “why not the top 1%?!?”) and the cancer still came back after 14 months. I have to get used to the fact that any appointment with an “the absence of bad news” is a good meeting.

A friend of mine equated my response to an athlete who gets an injury and is forced to be in physical rehabilitation for a period of time. The athlete really is not that interested in the process of his treatment (e.g. “it looks like the bone is healing well”); they are just interested in when they can start to get in the game again. For me, I just want to know when I can sit back and not worry about this anymore. Unfortunately, we all know that this will not be the case for many years. Even after my active treatment, I still need to get through at least 3 years until odds are in my favor that I won’t relapse again. This is a hard pill to swallow. So, I am working hard to get used to taking “one meeting at a time” and celebrating the small wins along the way. I guess this is a good lesson. I think many of us would live a happier, more fulfilled life if we took this lesson to heart: one day at a time, celebrating the ordinary good news along the way.

Dave and I asked Dr. Maki to show us the scans this time and point out my tumors. It may come as a surprise to many of you, but we had never really examined them before. Why should we? We trust MSKCC and my entire team of Dr’s and we believe in them. As we looked at the “ tumors” (he pointed them out and I couldn’t even differentiate between my tumors and my organs), I thought that it is incredibly ironic that I haven’t felt the effects of the tumors since December, 2004 when I was first diagnosed.

As you remember, the tumor had progressed so far by that point that I was experiencing fairly significant side effects (fevers, night sweats, weight loss). Since my surgery in December, 2004, I have felt great! The only side effects that I have experienced are due to the chemotherapy rather than the cancer.

Dave keeps on reminding me that it is better this way; to feel great and live a normal life as opposed to be constantly “reminded” of the disease. I know this is the right way to think about it but sometimes, I can’t help but feel like I am on Candid Camera or Punk’d and this whole thing is a joke. “Jen, we just wanted to see how you would handle cancer, but don’t worry, you really don’t have it”.

It’s made me realize that I have complete faith in the team at MSKCC. I am going through surgeries, chemotherapy etc. because they “tell” me I have tumors, not because I feel them. I looked up “faith” in the dictionary the other day and the definition is belief that is not based on proof. I realize that although the Dr’s have all the “proof” they need in the form of x-rays, CT scans, blood work etc, that I feel no proof or evidence that I have the disease.

As I went on an 8 mile run yesterday and felt GREAT the entire time, I realized that it’s probably better for me to have faith in the Dr’s and no proof of the disease. Let’s hope this continues!