fasting for chemo

   

Yep, it does...radiation burn is no fun, but only 3 days left now in this first round of treatment. 

So when I had my "chemo class" several weeks ago, after our nurse Sam presented us with a long list of potential and cringe-inducing side effects, I asked her if she had ever seen a patient have success dealing with side effects in a non-traditional way.  I was thinking along the lines of chinese herbs or reflexology perhaps. After a pensive silence Sam said, "ya know, there was a woman who did a crazy fasting diet on the day before and day of her chemo infusion and she had virtually no side effects, in spite of being on a harsh chemo regime that is generally not well tolerated." I was intrigued.

As soon as I had a minute I began looking into this fasting protocol for chemo and was pleasantly surprised to discover information validating this indeed crazy-sounding diet. Valter Longo is the man credited with developing and testing this theory. Longo is the director of the USC Longevity Institute and a professor at USC whose work focuses on cell biology and genetics. He studies the things we can do to alter cell functioning to increase their potential for healthy growth and regeneration and minimize their tendency toward degeneration that can lead to problems such as diabetes, and cancer among others.  If you recognize his name it is likely because he is also the author of a newly released book, The Longevity Diet. And while I haven't heard of people in New Hampshire following this diet, when I told my brother in California about it, he quickly replied that this is a growing trend in that area (meaning it may make its way to NH in another few years).

Here is a summary of how this fasting diet works as I understand it. Please know this is in my own words and I do not profess to be any more than an amateur when it comes to making sense of it.  When normal cells in our bodies find themselves without enough food, they go into hibernation mode to conserve energy until food is available again. In contrast, cancer cells are not as smart and try their best to grow even when deprived of food. So when I am fasting and the chemo arrives when I am hooked up to the pump on Monday morning, the cancer cells hungrily devour the chemo maximizing its power to attack the cancer cells.  At the same time all the other healthy cells in my body are still sleepy and don't take up the chemo as readily as if I had just eaten a breakfast of bacon and eggs (not that I was fantasizing about that or anything-while I ate my 85-calorie banana that morning:), meaning that the chemo side effects are minimal.

I will add that I am not actually fasting, but consuming 500 calories/day on the day before, of and after I start my chemo infusion-Sunday, Monday and Tuesdays. This is called a "fasting-mimicking diet" that essentially keeps your caloric intake low enough that your body goes into fasting mode, without actually starving. The first day of fasting each week, Sunday is about as fun as it sounds. By the second and third day though it seems that my body starts to adjust and I actually feel more energetic and have noticed I need less sleep than usual. For the hunger headaches I take Tylenol and for the hunger pains, I think about what I am looking forward to eating Wednesday morning.

It feels good to have one small piece in this whole cancer puzzle that is within my control. It's almost hard to believe something as simple as fasting can have an effect on how my body responds to the chemo. I have been more tired than usual, which is to be expected, and which is also likely caused by my body working to repair the daily radiation trauma.

I have been working with a wonderful oncology dietician named Megan at my local cancer center. She has been very helpful in pointing me towards good sources of information on this chemo fasting protocol. Best of all Megan connected me to a local man who recently completed treatment for this very same type of cancer I have. This man also happens to be a retired doctor and did quite a bit of research himself before starting this same chemo fasting diet during and after each of his chemo treatments last year.  He had such great success that he told me he would joke with the chemo nurses that they were just putting water into his pump. I am thankful to have a kind, knowledgable and supportive mentor as I play these hunger games.

I'll be fasting on Sunday, so if you happen upon a chocolate or marshmallow bunny, feel free to bite his butt off on my behalf! I hope Flo and Bea will save a chocolate bunny for me so I can do the same  when I break my fast. And on that note, Happy Easter or Happy Passover as the case may be!

Bea's post

written by Juliana's daughter Beatrice (8)
When I found out mom got cancer I was super sad.  The night after me and Flo found out, we ran to Flo's room and made a present for mom.  We gave that to her a while ago and she loved it.  In a while she got her pump on and had it in a plain white pocket.  

Soon after my dad got her a bunch of Cotopaxi fanny packs so she could pick and she got one and has it on now.  Also, Mom started getting acupuncture so after she gets it, she has to relax and me and Flo can't annoy her or be loud or something else annoying.  It looks like it would hurt if someone poked needles in you but the acupuncturist say that she only poked them in a tiny bit and needle points were really tiny too.  Mom says she will be done with cancer probably by thanksgiving but they will keep giving her chemo for a while to make sure there is no cancer cell left in her body.  Since she got cancer and we told a few people and she has this post, we have been getting a bunch of care packages and dinner from this online thing called meal train.  It is really not fun for your mom to have cancer but we have so many nice friends who give us stuff to help and get through it.  

Even though cancer is a really bad and serious thing, my mom cant feel that she has cancer and she looks the same.  Mom has a lot of appointments, and I have school, so usually she is busy scheduling something or going to the hospital. I know my mom has cancer and that that is bad, but I still love her just as much.

The first picture is of me and mom on a hike that did not turn out so well, because I wanted to take the steep route and short route but it was actually long and steep, UPHILL. That wasn't that fun. Also, at the end, my sister convinced me that there was a shortcut between all the thorns on a VERY steep downhill. That didn't go well either. I got stuck and got a lot of thorn pokes. 
The second picture is of my aunt Mimo and my mom near Easter. Mimos the Easter bunny here. It was a fun day, not like yesterday. Mom's pump hurt and she went to bed early and there wasn't a lot to do, so we kind of just hung around and watched the sunset. Today was great because my aunt Mimo came in the picture above.😉🐰👍

Flo's post

written by Juliana's daughter, Flo (10)

I thought I'd write a post on the blog about how different it has been since mama got cancer. Mama and Dada first told me the night of mama's colonoscopy and I was really sad and then she got her pump on. She explained to me and Bea all of the side effects and things and she still is. A lot of friends were really nice and brought us dinner and we have had so many good dinners. 

When all my friends found out they also were really nice and gave me hugs. Mom has to have a big drawer of thank you notes too because all the dinners friends are giving us are soo greatly appreciated! Sometimes I walk up our road and driveway from the bus stop with mom so she can get a little exercise. Mom has been doing really well, considering that she is getting chemo also because she is fasting probably. It has been kind of different because mom can't go into places with a lot of people (library, my school, grocery store) because there are so many germs.

This morning I slept in, painted my nails, and then started making cupcakes (which I probably shouldn't have been doing because mom isn't supposed to eat that much sugar but I want to eat them anyway). Then the acupuncturist came over to help mom. Mama says acupuncture helps her immune system and makes her healthier but I don't really get how that works. Mom got all situated on the couch and I then watched Jen take mini needles and poke them lightly into random parts of mom. She put 4 into her feet, 4 into her legs and 4 on her wrist and arm. I saw on this plastic guy we have how Jen felt where the tendons were and the needles poked right in between them. She also carefully poked 4 needles in a square right on the top of mom's head. It looked really creepy the first time I saw it but mom said it just felt like a tiny prick. Mom then had to rest with a blanket over her for about 15 minutes. Then I gave her an extra recycled seltzer bottle and she easily pulled the needles out and threw them in there. She said it is usually really relaxing but me and Bea kept interrupting her rest time with cupcake timers and stuff. Then I tried to frost the cupcakes but it got a little messy so I let mom do the rest.

Around 1, we went on a super short hikeish/walkish thing and after a few minutes got to a place with a really nice view. We all took like 100 pictures with the lake behind us but it ended up looking like we were winking because the sun ;).

We then went down the trail and we were trying to decide what trail to go on and my sister said we should go on the shorter and steeper path so we went that way. That did not work out so great because Bea thought that we were just going steeper down but we actually had to walk up the whole hill again so it ended up being a little problematic :p long day!     

what's important

written by Juliana's husband Rob

(http://bymariandrew.com/ with permission)

Juliana recently showed me this drawing by Mari Andrew, an artist she follows on Instagram. We both smiled and agreed that it was a pretty good representation of the confusion and uncertainty that we have felt since she was diagnosed with cancer six weeks ago.

Sometimes it feels as though this diagnosis has turned our lives chaotic. It has definitely gotten more complicated to figure out how to get the girls to band practice, skiing, music lessons, etc. when Juliana is going to radiation every day, chemo twice a week, and usually a couple of other appointments every week. It has also gotten harder to decide whether any of that matters. 

Before the diagnosis, who was to say what was important: music lessons? basketball practice? Some work related social event? As far as any of us knows, all of it is important. Or none of it. But like a lot of other families we have tried to do all of it.

For a few weeks after the diagnosis, it seemed as though all of that noise would recede, and the diagnosis would provide us with some clarity. We would realize what was important, as the cliché goes. What matters most?  Getting better and spending time with family. Perhaps our lives would go from chaos to clarity instead of vice versa; the Mari Andrew drawing would be turned on its head or rotated on its vertical axis. 

This experience has reminded me, more than any other experience in the past ten years, of my experience in Iraq in 2005 and 2006.

Day to day and minute to minute, I have never done anything harder than that. A soldier in that environment is faced with impossible decisions on a regular basis. Friend or enemy? American life or Iraqi lives? Roadside bomb or trash pile? Most of the time, we never know if we have made the right decision, even years later.

But, during those fifteen months, I had a sense of mission and a sense of clarity that is hard to replicate. I "realized what was important." Staying alive and getting rid of the bad guys, to the extent that we knew who they were. Remembering birthdays, keeping in touch with friends, keeping up with news was not so important.

I was pretty happy during that deployment, sleeping on a cot, in a tent, 115 degrees outside.
It was coming back that was difficult and realizing that all those things you had given yourself permission to ignore actually mattered if you wanted to get by. Once you get outside the present moment you realize that managing relationships among humans is important and it is difficult. Looking back, it seems as though the Mari Andrew drawing actually applies to the redeployment (homecoming) as opposed to the deployment.

So the cliché goes: you realize what is important.

How does a cliché gain its status? Because it occurs to you, naturally and frequently, in different situations.  Why does "cliché" have a negative connotation? Because eventually, they ring hollow.

Six weeks after the diagnosis, sometimes if feels like the noise has crept back in. Daily radiation and biweekly visits to the chemotherapy clinic start to feel almost routine. 

Thanks to the generosity and support of a hundred friends, family members, and a few people we barely knew before this, we're able to keep doing most of the things we did before. The girls are scared and clingy and they cry more than they did before, but they do all the same stuff. For a solid month they were actually a lot nicer to each other and slept in the same bed, but they’ve begun to fight more. That is probably a good sign. They are back in their own beds.

I don't think that Juliana and I have figured out what is important, any more than we knew beforehand. In Iraq, I had doubts about our mission but I knew that I trusted the guys around me and we could depend on each other, and that was enough. In the situation where we find ourselves today, we know this too and that we love each other and appreciate the many friends and family who are making it possible for us to get through each week, eat well, to keep our jobs and to remain a part of the community. And that's enough.

half way day!

Today is day 14 of my 28 days of treatment, so we'll have a little celebration tonight!

And while I don't find it useful to think about this way, I should clarify that although I am halfway through this first round of treatment, I do still have many months of treatment and surgery ahead of me, but....

To review, this is the treatment plan I am following along with estimated time frame:

Round 1- First treatment--28 days of daily radiation combined with chemo infusion via pump

Round 2- Waiting period with no treatment during which the radiation continues to 

                 shrink the tumor (April and May)  

Round 3- Surgery in Boston to remove the tumor (June)

Round 4- Another waiting period while I recover from surgery ( June and July)

Round 5- Second round of treatment with chemo only.  This chemo regime called FOLFOX will be 
                 stronger than the first  round; it  is a “clean-up"  chemo.  Over the course of 4 months the 
                 FOLFOX will be coursing through my body in hopes of eliminating any rogue cancer cells
                 that  may have stealthily escaped during surgery or otherwise. (August through November)

Round 6- Recover from chemo and look forward to a year of good health ahead! (November,

                 December and beyond)

As my surgeon told us shortly after my diagnosis, I should think of this treatment plan as a marathon, not a sprint.  Thankfully I have Robbie by my side for this marathon and he is no stranger to marathons or other grueling adventures-from the Alaskan wilderness to parenting and Ranger school to the backroads of Vermont to the daily slog up our driveway.  For this reason, along with 109 others I am eternally grateful to have Robbie by my side.

For now though I am almost through week three with thanks to endless love, messages, meals and cookies, cards, special deliveries, help and support from so many good people.    

Thank you!