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My second kidney stent operation

Yesterday, I had my kidney stent replaced that was put in in May. We were all hoping the doctor would say a replacement stent wasn’t needed, but he said my kidney is still not absorbing the right amount of fluid that it should be so better to be safe than sorry, he felt putting a second stent in was the right move for now. Here’s two little videos about the kidney stent operation from the little dears you’ve come to know and hopefully love:)

Day Before the surgery:

Preop for the kidney stent operation
After the surgery:

After the kidney stent operation

The last few weeks have definitely not been easy. I am doing my best to stay in a positive mindset, and I believe this treatment will work and that these tumors that are in my spine and in my groin will start to shrink and the lymphedema will get better since it’s already starting to/and that in no time at all I will be walking again. It’s really scary to not be able to walk, and I am learning a lot about what people must do to make so many accommodations to be able to Live successfully in a wheelchair. There are definitely a lot of accommodations that need to be made, and a lot of things that can become very frustrating pretty quickly, so I am learning even more about patients and even more about resilience. 

My friends and family have been such an amazing support, and are really doing everything they can to help me through this difficult time. From cooking me dinner’s, to walking to close restaurants, to walking up and down the river and the Highline,to chasing me on my wheelchair last night laugh and go too fast, to helping me get through the pain when it’s just too much to bear. To sleeping over and watching 80s movies and laughing until we fall asleep, to waking up and bringing me coffee and making me breakfast. I don’t know how well everything everyone enough for all of their love and compassion.​
Tonight I had my second treatment of my “miracle treatment” and I am so ready! I have a feeling it’s going to work quickly, and I hope that everyone keeps me in their thoughts and prayers this evening and tells them selves that it is working quickly because belief and mindset is half the battle.

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1st Miracle Infusion: treating the mutation NOT the location 

Tonight was my first “miracle” stage IV colorectal cancer treatment. The dream? The miracle?  The change in mindset?

  • We need to be looking at WHAT the mutations of my disease ARE 
  • We need to NOT just focus on where we found cancer in my body or where we found the disease starting

The next step?

  • We choose NOT to treat the cancer based on only the LOCATION we found it.

So, now you’re probably wondering what should we do? Or what some scientists believe should be the next obvious step.

New approach to treatment 

  • we should look at the patient’s mutations, even when they don’t match up with the location we find them in, and choose drugs that treat the specific mutation and give those drugs a try 

Then, going even one step further, we can combine this innovative treatment approach with the highly innovative/highly advanced treatment of immunotherapy.

WHY NOT TRY?

Maybe WE can stop this nasty disease in its TRACKS. This miracle is occurring in many cancers, and the hope is that we can see this miracle also happen in colorectal cancer. The issue is? Only 1% of colorectal cancer patients have the same mutation I have, so it really doesn’t make sense for a pharmaceutical company to invest that much money in a “trial for one”.
They do offer a variety of innovative programs, to help patients access drugs they can’t afford on their own, and have have helped more than  1.4 million patients access the medicines they need to keep on living without going bankrupt at the same time. From my understanding, if you are already on the drug, there is no wait an approval process. If your oncologist is applying for a new drug, or a new drug combination, there is a longer waiting period. In one way, obviously this angers me when so many people are waiting for drugs that can potentially save their lives. But realistically, pulling my emotions back from it all, it makes no financial sense and science won’t really move quickly forward, if you just keep handing out drugs without really making sure these drugs will be most likely beneficial to the patient at hand. There’s just so many ways to look at it, it gets pretty complicated.

Here is my miracle company, which is a WHOLE Beautiful story within itself, which I will tell later on in the week.

https://www.genentech-access.com/hcp/brands/kadcyla/find-patient-assistance.htmlGenentech patient assistance

My first “miracle” treatment-I am completely blessed and utterly humbled because I had a tribe of human and working together to help me get access to these drugs without having to pay so I could start this treatment immediately, since time all of a sudden became a big part of the equation. Breaking down standard cancer treatment boundaries and showing cancer we KNOW we need to think WAY outside the box in order to rid our bodies of this awful disease is of UTMOST IMPORTANCE. And let me tell you something… I can feel cancer shaking and it’s boot. It knows it’s we’re coming for it, and that we have the best brains in the world just about to figure it all out.

Link to last nights first miracle infusion:

https://youtu.be/PRLP40K7l3s

Video

Cancer Morning Miracle

Cancer Morning Miracle

So considering only two days ago I couldn’t move my legs at all, I could not stand up on my own, I could NOT walk to the bathroom on my own, what else could I NOT do…..I can’t even remember now ……well there was a LOT.. I could not lift my legs on their own, I could not sit up, I could not even roll over on my side to pick up the book I was reading that fell on the floor on my own…
TODAY, I woke up and said to myself: I have worked so incredibly hard since being in here off and on the last few weeks; mentally, physically, spiritually and emotionally. Pushing the boundaries of every one of my limits pertaining to faith, trust, believe and the idea of miracles and the reality that they DO exist on so many levels but ONLY if you have enough energy left to hold on to the light they are telling you to follow …..if I get out of this bed, and can accomplish even ONE of these things on my own without the pain(which has been a pain no human should ever have to experience)  if I am able to  accomplish a few of these things simultaneously without the pain, and if I can even accomplish things that at this point I no longer  even remember being able to do withOUT PAIN …ANY of these scenarios are actually miracles.
SOOOOO…..The fact that I just did ALL of these things just now, not completely in my own, but pretty close to it, well….to me? These accomplishments make me feel like I might as well have just flown to the moon with my Mom riding next to me, holding my hand, and screaming at the top of her lungs, “YOU GOT THIS!”

Jonsar studios: Conversations with Artists – Kristen McRedmondJUNE 20, 2016

This interview was done a while back in the spring, right around the time my cancer began rearing its ugly head quite viciously  just to remind me that it was having one crappy day.

Kat and rob at jonsar studios, who had shot the video I was featured in for Michaels Mission, gave me such an incredible gift out of the pure kindness of their hearts: A photo shoot with my family, the interview transcribed here which opened my eyes to so many things I hadn’t yet examined(mostly out of fear)…..and then they went above and beyond and gave me the MOST PRICELESS Gift of all: a full day with my family, to ensure me not to be  afraid of how alone I felt, as my best friend was slipping away. My family was able to make me smile, my nephews gave me the gift of  laughter, my niece and I held hands and didn’t need to speak a single word……I sat back, and marveled at how much they truly, deeply support me. I am definitely NOT alone.

Thank you jonsar studios…..thank you Kat and Robert
JUNE 20, 2016

Jonsar studios: Conversations with  – Kristen McRedmond

JUNE 20, 2016 

What is the art of living?


“I think the art of living is trying to remain graceful no matter what your circumstances. It’s really easy to get pulled into the darkness. I try to start every day by being appreciative.

How did you become aware that you had cancer?

“I went for a colonoscopy on a Monday and I was supposed to be leaving for a big surf trip on Saturday. All week I just had this feeling. I had been looking stuff up and I just had a feeling. On Friday I left school and the doctor called and said ‘please come to the office.’ I stopped at home and saw my bag packed for my trip to the Seychelles and I knew I wasn’t going. I walked to the doctor’s office and he told me I had colon cancer.

What moves you forward?

“I think a huge piece of what’s moving me forward has been helping other people. Sometimes I get exhausted and I think I’m on this roller coaster. It’s been almost four years. They didn’t think I’d live past three months – and that was a generous offer. I’ve heard this phrase – ‘you’re a survivor the day you’re diagnosed because you’ve survived the diagnosis.’ There’s a lot of truth to that.

What does it mean to live gracefully?

“Being graceful is not allowing yourself to be angry. Trying not to be bitter. I try to remind myself that any day I’m alive is a gift – even if it’s a hard day. It’s hard to stay graceful. It’s hard to stay in the light – especially when you’re in pain. Lately it’s been a very hard patch.”


How do you do it?

“By the strength of my family and trying to take it one day at a time. Not looking too far in the future. My aunt always tells me – ‘don’t future trip.’ So I try to stay in the moment. This is a great moment. It’s all about balance.”


Describe Balance

“I stay balanced by any time I have a negative thought I try to counter it with a good one. If I feel myself slipping to the negative I try to fill my mind with thoughts that bring me back to the light. It’s naive to think that I can always be on the bright side of things, but I try to ride that line. I wish I didn’t always have to be on that edge. But I realize that even before cancer I have always lived my life on the edge of balance – moving and traveling and throwing myself into things. With a disease it’s a lot harder, but it’s also more rewarding.

Do you remember the first time you found balance on a bicycle?

“I do. I was with my dad. He was so proud. And when he let go I went right off the road, right into a bush.”

What moves you?

“Love moves me. Family, Traveling. Those things move me. Finding great people in the world. Being on a paddle board when it’s super calm, and it just drifts and is so peaceful. Watching my nephew sleep. I’m always in awe of kids. Seeing my niece’s face at a concert — just pure joy and laughing. I’m in awe of people’s strength and how people can overcome things. I’m in awe of life and how complicated and beautiful and tragic it is all at the same time.”
What have you learned along the way?
“Don’t take joy for granted. Because there are going to be some really crappy things in life. But there’s also going to be a lot of joy. Don’t ever take it for granted.
My biggest fear – if I do die from cancer – is that people are going to say ‘she lost her battle’ – that the cancer won. I don’t think that. I don’t believe if you die from cancer you lost your battle. I think it’s the way you live with cancer. The way you accept your diagnosis and try your best to rise above it. Physically, mentally, emotionally. That’s the way you survive cancer. And I am a survivor. I’ll never lose my battle – I’ve been winning.”


Kristen McRedmond is a pre-kindergarten teacher and colon cancer survivor. To learn more about Kristen’s battle with cancer visit her blog here.
Kristen participated in our film highlighting the stories of colorectal cancer survivors, caregivers and the support organization, Michael’s Mission. 
 

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Stand up 2 cancer

They seems like such simple questions, but they are really quite complex. Why do I stand up to cancer? Who do I stand up for? I have been asked these questions quite often the last few months, and I have thought about them in many different ways.
Let’s start with the blanket answers… The blanket answer for why I stand up to cancer is, how the hell could I not? And the blanket answer as to who I stand up for is, anyone who has had this awful disease enter into their life, in any way.

So why is the first answer that comes to my mind when someone asks why I and up to cancer, ” how the hell could I not?” Well, answer me this, what is the other option -should I lie down? Would you lie down, and let a demon walk all over you if it tried? Would you lie down, and not try to protect yourself if the devil decided to break through your front door? So now, if you answered those questions the way I imagine you would, you can see how silly the question almost sounds…It should be crystal clear now, why do I stand up to cancer? Because lying down, was NEVER, EVER an option. standing up to it, was pure instinct. 

When I think about all the reasons I stand up to cancer, I could easily fill a book with a million pages. Here are a few of the million:

  •  I stand up because I know that the cure is out there , it just needs to be found.
  • I stand up because I believe that this disease should not exist, and I firmly believe there will be a day when it will exist no longer.
  • I stand up because there are so many people with this disease that do not have the energy to stand up for themselves.
  • I stand up because the fact that this disease has become so widespread, mean that we most definitely have done things as humans, that have contributed to its growth and this MUST change.
  • I stand up because people need to know they have options when it comes to treating this disease, and need to know they do not have to settle on just the three standard ones they are told about.
  • I stand up because I believe knowledge is power. And facing cancer requires the use of every superpower an individual has at their disposal.
  • I stand up because I believe that by sharing my story, I might just have the power to help someone else’s story change for the better. 

When I think about who I stand up for in the fight against cancer, the answers are ones that are much harder for me to talk about. The answers to this question aren’t things, they arent ideas, they aren’t theories or opinions….. The answers are names. They are names of people who I love, they are names of people I have lost. They are names of people I’ve watch suffer as this disease has ravaged their bodies. They are names of people who taught me what it means to have faith, even when faith doesn’t necessarily mean a cure. The answers are names of people who my cancer has affected; my Family, my friends, my loved ones. The answers, are names of people who are no longer here to stand up for themselves.

So who do I stand up to cancer for? Like I said above, for everyone who has been affected by this disease, in any way. Yet in my heart, when I feel it beating the strongest to remind me to standup, it’s for the people closest to me that this disease has taken.Especially those in my family; my aunt Moray, my uncle Nicky and some of my aunts in Italy. And Especially those who are my friends; Lauren, Annie, Candace, Jennifer… And most especially for my best friend, Gina. I promised her, That no matter what, I would never lay down to the disease, I would always stand up tall.

Spine mets…..

Spine mets…..nasty little tumors that started out no bigger than the size of the grain of sand. There was one, then there was three, then there were five, then there were three, then out of nowhere somehow there are close to 20, varying in size and location.

The problem with spine mets, aside from radiation, ablation and all their subcategories, there are really no other options. Getting through the barrier of “hard tissue” with any sort of systemic treatment,is almost close to impossible. I’ve tried radiation, I tried ablation, I tried different forms of both- and my tumors are resistant to all of them. So…. The question is, where the hell do I go from here? 

They are a few new systemic immunotherapy treatments that we are investigating, all clinical trials with no data reported on whether or not they think they may have the capacity to reach the spine. Clearly the clinical trial I am currently on, is not able to, so I need to make some quick decisions to try and find something that has ANY potential to get these spine mets under control, since they have  begun to grow at a much faster rate. 

Thank goodness I have some phenomenal people who are working on figuring out which road may be worth traveling on. Everyone is trying to act quickly, emailing  throughout the holiday Weekend, discussing ideas and possibilities-because time is definitely of the essence right now.

So….not to be a complete Debbie Downer…but if you are wondering what spine mets feel like, or how I feel now, read this next paragraph. If you don’t feel like reading something even MORE depressing than the last few paragraphs, i would say DEFINITELY skip over this one:)  

The last three months living with spine mets:( They started two years ago, but that would be a lot to write about:)  JUNE: I went from having some back pain, to extreme back pain, to getting it under control somewhat, to then having some aches while walking… August: my foot began falling asleep, then my leg began falling asleep, then my whole left leg began going numb sometimes, then it began being numb more often than it wasn’t, and when it wasn’t  numb, the pain began getting COMPLETELY out of control. Then, when I realized that my entire spinal cord could possibly decompressing and I could become paralyzed, I went to the hospital on Wednesday.

Hospital stay: They put me on many pain medications, I had a causal epidural, I had an MRI done that showed what the CT scan two weeks ago did not show in my spine, and many other interesting adventures during my stay at Sloan. I was released yesterday, and headed right to the beach. I am waiting for the epidural to start to work, I am still pretty numb in my left leg, the pain in my back is a little less, and like I said before, I am working tirelessly on figuring out some sort of plan to move forward with. 

I can only imagine how depressing I sound right now, and how hopeless it all seems. But I’ve been in similar situations with my cancer before,where initially there didn’t seem to be a good road to try and travel on, times when there wasn’t a clear, laid out path to take, and many times when there didn’t seem to be any  treatments worth taking a chance on. And you know what? My rate of success in regards to finding a road, choosing a path, trying a treatment, having one up on this cancer, has been 100%.   What I am MOST grateful for, is that my rate of success at waking up another day to live this incredible thing called life, has truly  been 100%. And for anyone who knows me, I will do everything I can, to keep my rate of success the same moving forward. 

After a year-an update August 2016

I have many journal entries that I have written in the past year that I just have not have the courage to post, and I recently at least had the courage to write one explaining why I became so uncomfortable sharing my story and my thoughts in such a public way… but right now I think the first thing I post after so long, should be an update about what is happening in my cancer journey and why even though I have moments of happiness, it’s been increasingly harder and harder to achieve them

Please read this first…..

In order to do that though, i do feel I have to touch upon one important topic that has been on my mind a lot lately and can really get in the way of people understanding how difficult and painful so many things are for me….and that is social media. It does not show you all the aspects of my life. It can be very deceiving in many ways and it is very easy to take what you see in pictures at face value, and not think about what is happening before and after that picture was taken. 

 When people hear that I am not feeling well, or have heard my cancer has spread, or have heard I couldn’t get out of bed for a week from treatment, or that the side effects of so many things caused me to to not be able to eat in five days….often the first thing they say is, “but you look so busy and happy on Facebook! (10 pictures of the same thing) You did that headstand! (And then went home and cried for four hours because I was in so much pain) You looked so pretty in those pictures that were posted!( filters are amazing) You are always smiling with your friends! (Because are you supposed to show the pictures when you are sobbing on their shoulders?) But you were out to dinner last week! (Yes, I stayed for 15 minutes) You were at the beach! “(Yes, laying down in the shade instead of in my bed) Yes- those things are true. I have done those things. For the few moments I can actually climb out of my cancer, I push myself to the limit to try and do the things I love, because I need to try and hold on to who I was once for as long as I can. I will myself to do things some days, while fighting back tears from the pain, because in my heart I am scared that I will most likely never be able to do them again. I am more and more scared because there are more and more days when it takes me sometimes four hours to get up the strength to just get out of bed. Most days I barely have JUST enough energy to drive to the beach 2 minutes down the street and go sit in a beachchair.

 I don’t think many people have an idea about any of that-and a lot of why they don’t, is my own fault. I don’t share those dark moments the way I share the bright ones, because I don’t want to depress everyone on social media and bring them down. I don’t take pictures of the dark moments because I try and let them go after they happen and can’t bear the thought of being reminded of them.

Update….

I was literally frozen for hours at the doctors office last week and then had treatment, which was hard because I don’t know if it’s even worth it. There is a little good news(but relative, because MRI’s are really what show the spine and I had CT and PET scans) but more bad than good from the scan. The “good” news is, my spine tumors look stable-so they aren’t crushing my spinal cord, but they are causing numbness to my left foot and leg. The bad news is, the cancer in my groin area and in my lungs has grown. The cancer in the left groin area is blocking fluid from traveling up and down my leg, so on top of my spine causing numbness, this is causing my left leg to swell up to 7x its size. The stretching is soooooo painful.

My cancer seems to be growing at a slow rate for the most part, so since my cancer has only grown 4%, the trial drug company is allowing me to stay on the trial(anything under 20% they apparently see as good news) my oncologist wants me to stay on it because we she thinks we literally have no other option right now- so having something that can keep the cancer growing slowly, is better than having nothing at all. She also said that one other person on this trial had their cancer grow on the first scan and then shrink on the second scan.

 I am going to see what the next scan shows, and in the interum i am talking to some amazing people to see if they have heard of anything in the pipeline and if they have any other ideas up their sleeve- there has to be something, there just has to be.
This is not at all what I wanted to hear, but I had a pretty bad feeling about this scan. I think after four years, I know my body very well in terms of what can indicate it may have spread.

I am starting my new position next eek and spending this week trying to get my mind in a better place and also try and will my body to function a little better so I can make it to work. I am so excited about what I will be doing, just hope I am up to doing it. 

Thank you again for the years of love and support….it is carrying me through, even more on days likes today where I can not carry myself.