No one truly knows your story unless you tell it.
I’m starting this blog as a way to document and appreciate the daily ups and downs that comes from living with cancer. The path is never easy. Like life there are tears of happiness and sorrow. There’s so much that people don’t know until they’ve lived through an experience. I hope through these posts to inspire, motivate, and educate.
Last week I again made my way down to MDA in Houston. I had received amazing news in April that my treated brain tumor had decreased by 1/3rd since December. This was so much cause for celebration already. In the weeks leading up to the trip scanxiety set in. That’s the term that many cancer patients use for that time of so much uncertainty. I had hoped that the scans would yield stable (unchanging) results and maybe I’d be moved from my 4 month frequency to 6 months. Instead, I WAS DECLARED CANCER FREE!!!!!!!!
I started this unexpected journey in November 2015 at 33 years old with stage 2B Melanoma. Surgery was ordered immediately and I was told that it was gone. A year and a half later, I remember my heart (and stomach) dropping as I sat in the doctor’s office hearing that at 35 I needed to get my affairs in order.
I think about that moment often and glance towards that office as I drive by once a week. It couldn’t have been easy for the oncologist to deliver that news. They knew the odds of stage 4 was 15-20% at best for 5 year survival. But they also did not know me. They did not know how incredibly resilient and let’s face it stubborn I am. I made up my mind to go to MDA right after I got back from a conference. On my way to the conference, I was still processing what the first oncologist told me and hoping that MDA would have another answer. I sat next to an older lady on the Southwest flight to California. We started talking and I told her what I was trying to process. At the end of the flight we exchanged phone numbers and she told me that she’s going to check on me. Five years later Linda still sends me a text every 6 months. I’m reminded of this simple kindness of listening and checking in with someone even if there’s nothing more that can be done but listen.
Flying into Houston for my initial appointment at MDA was overwhelming but also comforting. There was a million appointments and different doctors, but they all had one focus and that was to help me heal. As a side note, never once did a doctor at MDA lose hope or tell me to “get my affairs in order” even when I had doubts. This was an essential lesson in learning how to advocate for myself and doing what ever it takes to survive.
At the time of my first diagnosis, I had two young kids. One was 6, the other 3 years old. This journey has impacted both boys in very different ways. My oldest was in first grade when it began, he’s now a freshman in high school. He remembers a time before cancer when his mother had more energy and was not in bed most of the day. He remembers going to the same high school, which he would attend 8 years later, for an “Adopt-a-Kid” Christmas party because his school counselor wanted him to have some joy at a very difficult time. He also remembers a wonderful non-profit organization in Austin called Wonders and Worries that held free classes grouped by age to help kids cope and process everything that comes with having a family member with cancer. My youngest, who’s now in middle school, only remembers me being sick. He doesn’t remember a mother who didn’t have cancer and accepted it. He also had professional assistance and some incredible teachers. During this time I also started writing letters to my boys with some of my memories. Those were some of the hardest letters to write. It’s the type of task that you never want to do, but know it’s important so do it anyway. Those letters are still tucked away, but thankfully unfinished. Both boys processed the journey and sheer trauma in very different ways. No other word for it. It’s meant so much uncertainty and pain.
After the tremendous news this week, I rushed home where the family sat on the couch waiting to hear the news. My oldest started crying and wrapped his arms around me hugging me tightly. He was reassured that I was going to be there to see the milestones ahead in his life. I was going to be there at his high school graduation, college, and so much more. My youngest also hugged me but had a look of hesitation and let’s see in his eyes. Yep buddy, I’m going to be there for your milestones too.
During my visit to MDA last week I wore the Melanoma Awareness shirt that was part battle armor and part moral support. After my last appointment of the day I waited by the elevator when an older man with a cancer support shirt on himself read my shirt and asked me if I believe in a cure. I said yes and I had survived. He smiled and said “me too”.
Could it have turned out differently? Certainly. I know that I was younger when diagnosed (but so had others), and received the latest immunotherapy (but so had others). And had access to the best cancer center in the world(but so had others). In short I don’t know why and maybe I’m not meant to know. What I can be is incredibly thankful to have the gift of more time. There are no guarantees in this cancer journey. For the better and worse, this journey has changed me. So we turn the page to the next chapter and live well.
I had the incredible opportunity to join a group of 12 other cancer survivors on an adventure in July. This program was through, First Descents, a non-profit aimed at giving young adults who experienced cancer opportunities to push themselves outside of their comfort zone. It was a 5 day trip that will never be forgotten. The adventure included learning how to kayak followed by class I, II, and II white water rapids on the Arkansas River in Colorado. The theme of the week was “challenge by choice”, you always had the option to partake in the adventure or find an alternative path. Although a bit out of my element I pushed myself each day and had an amazing time. What made this experience so incredible was that there was almost an instant bond between participants. We had all been through some form of cancer and treatment. We had all lived through hell and soon began sharing stories of our journey.
After the adventure, came August which meant back to school for the kids and I and scans at the end of the month. Scanxiety is a real and common thing in the cancer world. It’s the worry and anxiety that shows up before scans and appointments. People handle it in different ways. I always wanted to go in knowing my different options, paths, and plans of action. You will have an option A, option B, option C, etc. Knowing that if the best news is not presented you still have a plan. Maybe this is my attempt at control but it works for me. Usually scanxiety starts a few weeks before the actual appointment. But this time was different. Maybe it was the Colorado trip that boosted my confidence and reminded me that I’m not alone.
So what were the results, drumroll…continue to stay clear-no evidence of disease, no evidence of cancer from the neck down. All the lung tumors are gone and have stayed away since immunotherapy. Immunotherapy had also cleared 2 out of 3 brain tumors. The remaining brain tumor was monitored closely for a few years. In March 2021 it was starting to grow a little more and we decided to essentially zap it with Gamma Knife radiation. Gamma knife is very successful, but of course has risks and side effects. The past 18 months has been monitoring the delayed reaction of the tumor and surrounding tissue. After 18 months, the swelling has started decreasing in size along with the tumor itself. This is amazing news and I’m extremely grateful. If I continue to be stable, (some people may laugh there), it’ll mean going for scans every 4 months to 6 months to 1 year checkups. That is the path to survivorship. It means dealing with the side effects for maybe forever, but that’s a choice that I’d make a million times again. So what’s next? More adventures of course!
On March 5th, 2021 I underwent Gamma Knife surgery to target a brain tumor. Very few things can prepare for that moment and experience. The previous few days were filled with pre-operation appointments and scans. The morning of the surgery a mold was made of my face. I was told that because of the position of the tumor they did not need to put a halo on me. A halo is essentially a metal apparatus that’s literally screwed into your skull to make sure you don’t move during the surgery. Let’s pause there…screwed-into-your-skull. I’ll admit that part freaked me out and went into full research mode with google and talking with other patients who had been through the procedure. But at the end of the more than slight panic attack, lasers need to be very precise. Due to COVID restrictions at the time, Brandon had to stay at the hotel across from the hospital. I would walk down there alone, put on a brave face, and when ready walk back to our room. The truth was that I was terrified…not so much of the laser beam but of the possibility of it not working.
During the procedure and most of my scans I put myself into a deep meditative state and try to block out everything else. I needed to push every worry and concern out of my head and just focus on that moment. I knew it would be a blur afterwards and asked my doctor to take a few pictures as they were prepping for the gamma knife. Yes I did get to keep the mask and joked later it’d make a scary Halloween costume. Right now it’s put up on a shelf in the closet as a reminder of the battle I made it through. In all seriousness it almost doesn’t seem like it happened or was real.
Almost a year later I’m writing to keep busy between my tests and scans and reminding myself of the stops on journey. Scans after the surgery indicated that the tumor had swelling around it as a result of the gamma knife. Some scans showed slight increases in size due to swelling while others showed shrinking. The overall impression was stable. Unfortunately without a more invasive surgery they don’t know if the tumor is now dead tissue or not. What they do know is that we can watch and monitor.
For Melanoma, as of 2018 the five year survival rate for stage 4 is 22-27%. The type of immunotherapy I had has a progression free rate of 34%. Gamma Knife surgery success rate of 90%. What does all this mean? For five year survival it’s 1 out of 4 people. Immunotherapy working is 1 out of 3. So far I’ve defied the odds and have gotten this far. It’s been 6.5 years since my first surgery at stage IIB, 5 years since stage IV diagnosis, and 3.5 years since completing immunotherapy.
In November my oncologist told me to enjoy the holidays and not worry about Melanoma. Not worrying is a very hard thing to do by the way. Knowing that in a second that word “stable” can change creates a lot of uncertainty. I soon began to look for more experiences. I do not like the phrase “bucket list”. Instead I prefer “adventure list”. I have had many adventures and began to explore the idea of several more. The phrase “tomorrow is not promised” and “plan for the future but also plan for this moment” echoed in my ear as I began to explore the possibilities.
I wanted to celebrate. I wanted to celebrate the end of my 30s–a decade like no other where I was diagnosed and battled melanoma three times eventually being stage 4. So when the opportunity for a great deal to visit Tuscany came up I jumped.
Planning experiences in Italy is almost like a kid in a candy shop. It’s the okay we have to come home sometime part that’s limiting. What images come up when you close your eyes and think of Italy? A pasta making class in an Italian kitchen while sipping wine, walking under acres of olive trees, grape vines stretched for as far as the eye can see, hiking through the woods on a truffle hunt and cooking those truffles in an unforgettable meal. The adventures have no end. It’s taking a moment to fully appreciate that the brick you’re walking on is hundreds of years old and will be here for hundreds more.
A friend had also recommended a group called First Descents. This non-profit organizes groups of young adults who were diagnosed between the ages of 18-40. I had applied before the pandemic and due to the cancellation of the tours during COVID, have been able to join the group at almost 40. There were different options and locations to choose from with the intent of being adventurous and pushing you just a bit outside your comfort zone. It’s also a space to shift your perspective, heal, and move forward on whatever path is ahead. I’ve chosen three different adventures for whitewater kayaking and will find out in a few weeks which one is my match. I’m very excited for this upcoming.
The journey has been like going to an amusement park full of rollercoasters when you don’t like heights. It’s being put in a line for the ride not knowing if it’s going to be a kiddie ride or be the scariest thing of your life. Hey you’ll find out when you’re on the ride. Or being on a smooth track and then suddenly in a free fall spiral. The sheer unpredictability of not knowing what is next for me has been one of the most challenging parts. You mean I can’t schedule this or have a list of things to bring with me to be prepared for any type of ride-tame to free fall? So what do you do when you’re in line nervous about what may happen on the next ride? You start thinking about the ice cream you’re going to get after the ride. How you’re going to be brave, do the best you can, and later there will be ice cream with sprinkles. Slightly delusional but you get the point.
In keeping with the rollercoaster metaphor, what is a low hill for one person is Mt. Everest for another. Everyone experiences it differently and has their own way to process it. Someone can tell you about their day at the amusement park and how “scary or tame” the rollercoasters were and where to get the best ice cream…but it’ll never be the same as your own experience. There’s too many factors and differences. Instead, what I’ve learned from other people’s experiences is what to look for and what questions to ask. Each person takes their own journey and I can learn from their experiences and hopefully help others.
Almost time for another set of scans and more appointments in the next few days. And yes, I’m thinking about the ice cream that’s waiting for me in my hotel freezer and maybe the gelato that awaits in Italy.
This week I went to MD Anderson for my tests and scans. Doctors had decided in October to move my appointments from every three to four months. My brain tumor was stable and unchanging for a year. This doesn’t mean cured or remission but it’s the next best thing in the cancer world. It was a really great benchmark to reach and each positive scan was more of a sigh of relief.
Then the news, the brain tumor that had been stable and unchanging for a year had doubled in size since October. There it was, the news I feared. In the next few weeks I’ll undergo gamma knife brain radiation and recovery. The surgery is promising with a 95% success rate to eliminate a single tumor. Afterwards there maybe additional treatments and steps. My lungs are clear of tumors but lymph nodes are enlarged and immune system shot. Gamma knife had been on the table as a possibility before, but seeing the tumor stabilize last year it was determined to not move forward with that plan last year when it was stable, and unchanging. Now that’s the definitive plan and immediate next step.
Like many people I crave stability and certainty. When those are not in my environment I do whatever I can to control my bubble and create those assurances myself. But when you’re facing a battle that you have fought before you know what needs to be done. You know what’s required of you, but that doesn’t make it easier. In short it’s a return to full catastrophe living. It’s a readjustment of priorities (again) where one thing matters at the core—survival. What are you going to give up to survive? How far are you willing to go and what sacrifices are you going to make? Those are the searing questions that reality brings to the table. The immediate answer for me is “Everything. Do whatever it takes.” That’s the automatic visceral fight response. That’s what I know in my heart needs to be done above all else. Getting there and being mentally prepared is another journey.
Being stable and having the words “remission”, “possibly cured” repeated gives you hope that an enemy is defeated and you can take what you’ve learned from the past and move on. New priorities and goals emerge and you start thinking of the months, years, and decades ahead. The feeling of “ready to drop everything at a moment’s notice” subsides. When you’re fighting to survive all you can do is react- sometimes there’s no time to think or analyze, just do what needs to be done at whatever cost.
Right now I’m grieving the loss of safety, certainty, health, and several goals. Priorities that were so clear a few days ago need to be altered. Some temporarily and others let go completely. The fact is that I don’t know how many more battles are ahead of me. It’s imperative to take the time to grieve. To take the time to acknowledge every emotion and feeling as valid. To face every fear and “what if” possibility and giving the space and time for each one of those. Again easier said than done. But an important lesson learned during the cancer journey. If you jump right into battle all those thoughts and fears will return.
Yes it is scary. It’s overwhelming both knowing and not knowing what lies ahead. Have I always been a fighter, yes. Am I going to fight this again, of course. But it takes a toll and leaves many scars. The journey continues.
Taking a moment to pause and absorb yesterday’s scans and this journey. It’s been a myriad of emotions of hope, exuberance, anxiety, disappointment, and heartache. Yesterday’s scans and tests showed No Evidence of Disease (NED) in my lungs!!! That’s basically the best you can get with stage 4 cancer. It’s similar to remission for Melanoma. It means that there are no melanoma tumors in my lungs right now or any signs of them beginning.
The second part is that I continue to have one brain tumor-no new ones. The one brain tumor is 0.6cm and is stable, meaning unchanged in size, orientation, or location. Stable is the next best thing too NED. It means that it’s stopped in its tracks. Melanoma is known for very fast growing tumors and thus a 15-20% five year survival rate for stage 4. That one brain tumor (need to come up with a name for it) has stayed stable now for 6 months which is a such a miracle. Each set of stable scans can’t be taken for granted. It’s another step forward and more reassurance.
I took a deep breath and got up the courage to ask my oncologist the question every cancer patient wants to ask but knows that the doctor can’t tell you–“How long do I have to live?” I asked him what he thought of my prognosis given scans over the last two years since I had immunotherapy. The question has been on my mind for the past five years and I’ve been searching for some relief and assurance. The phrase that “it’s going to be okay” is always filled with uncertainty. My oncologist put on gloves, and in the middle of a pandemic with social distancing, took my hands and told me that given how successful I’ve responded to the immunotherapy-and continue to respond to it two years later that he’s looking at long term survival and me not dying of melanoma. This assurance even if temporary means the world to me. It means that I can look beyond five years down the road. It means that I can look forward to the next 10, 20, 50, 60 years of life and adventures.
I can’t even begin to explain what that means and I’m still processing it myself. I’ve had so many doubts about what would happen the last five years since this journey began. The statistics and numbers were telling me that the odds were not in my favor. I was grieving the possibility of not being able to see my kids grow up, not being able to have the good and bad adventures and days that life brings. In the days leading up to the scans I was anxious for answers and honestly a direction. Most people want to know where they are headed and be able to plan and prepare for it. I found myself preparing for plans A-ZZ with the different what if combinations. I tried to center myself and accept whatever would happen.
This month’s set of tests and scans at MD Anderson were set up to be a test on whether or not my brain tumor stayed stable and I was moving forward, still in limbo, or needed treatment again. In November 2019 I got the amazing news that the little tumors that were still left in my lungs were disappearing. The February and April scans showed that they were gone. Having my lungs cleared is a huge relief. The fact that they stayed clear continues to be a miracle. How can three doses of immunotherapy completely eradicate all growing and multiplying tumors in both lungs and continue to keep them clear two years after treatments have ended? Immunotherapy literally teaches the immune system to recognize cancer cells and to attack them. Certain types of cancer cells can be tricky and hide for years in the body. That’s why it’s important to keep up with scans and to catch anything that comes up immediately.
Right now we’re celebrating. We’re celebrating knowing that long term I’m going to continue to fight and heal. I continue to be strong throughout this journey and have so much to be thankful for. Taking a few days to absorb a new reality, reframe, refocus and start anew with new possibilities for the future. Let the dreaming begin.
April 2020
It’s been a long time since I’ve posted and updated everyone. In February my oncologist wanted me to see the Brain Tumor Team at MD Anderson for evaluation. They saw that in February my one brain tumor had increased slightly from previous scans but it was very minimal. The team wanted me to return in April for more scans. If there was any progression we would discuss different options including gamma knife radiation. Since February I’ve always had a backup plan in my head if we had to go down this route-what would change, what is the recovery, would there be any side effects or complications. So many unanswered questions. So many things were put on hold because of the “what if’s”.
Then the pandemic hit. Spring break turned into lockdown mode and uncertainty filled so many days. What would happen? Am I more vulnerable to the illness? Would we be able to make it and survive? In the midst of trying to maintain a sense of normalcy with the kids and homeschooling I still was thinking about the upcoming scans and what it would show.
While Houston and Austin were in lockdown mode I drove to Houston. I was very worried about being exposed and took extra precautions to not stop for food or anything unnecessary. My trip was solely to get scans and return home. A few days before my appointment, MDA called me and said they had moved my appointment to a diagnostic center in Katy instead of downtown. It was deemed safer, in addition my results would be told to me in a phone call instead of an in person visit. I arrived at the diagnostic center early. There was a table set up at the entrance with a nurse checking patients’ temperatures and if they had been around anyone who tested positive for COVID 19, or had any symptoms. There’s always a plan B, C, and D. Those who did not have a temperature and were deemed ok waited in a large waiting room that had several chairs and couches removed. There were 5 people waiting of different ages. One older woman in her 80s was in a wheelchair accompanied by another women, maybe a relative in her 50s. The younger woman rolled the wheelchair in, signed some forms and told the woman in the wheelchair that the nurse would call her when all tests had been completed. She was not able to stay with her. No one else but the patient was allowed. As I sat waiting everyone made eye contact with each other in a knowing way. We all knew why each of us were there for scans during a pandemic and it couldn’t wait. I hoped that even if the support wasn’t sitting right next to us in the waiting room that it would be there at the end of the day.
In January 2020 I had an allergic reaction to the contrast given during a CT scan. I had some reaction before but never had thought anything of it. But that time was different. The contrast was sent through my veins in an IV while I was having my CT scan, I immediately felt my tongue swell up and throat close. It lasted for a short time and I told the technician the symptoms. She also noted the hives that were started to appear on my neck, arms, and chest. Nurses rushed into the room and a doctor was called. I was given benadryl to stop the allergic reaction. The incident was recorded in my files and each time I go in for scans I now take preventative strong benadryl as well as an IV during the scans. Total cost for multiple rounds of extra strong benadryl-$600 to insurance.
The scans were done quickly and I was told that they would be examined by my team of oncologists–not just one and I would receive a phone call. The first phone call came as I was driving back to Austin on a nearly empty I-10 freeway in Katy from the Brain Tumor Team at MDA. They were determining if any changes had taken place to the one brain tumor identified in my right frontal lobe. If significant changes had happened then the next step would be to schedule a Gamma Knife Surgery. I had readied myself for either outcome, but still hoping that we could proceed with the surgery and get it over with. I wanted to be rid of it if that was an option. The scans showed no changes or progression from the prior scans in February. The oncologists wanted to continue to monitor over the coming months. A second phone an hour later from my Melanoma Oncologist who said he was very happy with the scans and lack of progression. He wanted to see me back the first week of July for a new set of scans. From there if things remained stable we would discuss moving the scans from every 3 months to every 6 months.
People ask me if I’m in remission. Is the cancer gone? For the past two years there is no remission or NED-No Evidence of Disease. There is no “gone”. In 2020 I still have one brain tumor that’s considered stable. Can it shrink on its’ own with the continued help of three rounds of immunotherapy I had in 2018? Yes. Can it grow and even multiply? Yes. That’s the unknown.
Some melanoma patients continue to receive immunotherapy infusions for years after tumors have stabilized or left their bodies. Due to the extreme side effects that I experienced with the three infusions in 2018 and the astonishing success it had in eradicating all the tumors in both lungs and a few brain tumors it was decided that I would stop treatments and continue to monitor for now. The level of toxicity of the infusions that I encountered had an enormous impact on my quality of life. Would I do it again, yes. It was a high price to pay but it saved my life. Will I need to go back on immunotherapy later down the road? Maybe, that’s unknown. A lot of things can happen and are possibilities. But it’s important to balance looking at long term possibilities with what’s happening right now. Where are we at in the present moment? The present moment brings another three months of stability and somewhat certainty.
It’s been a while since I’ve written on this blog. I started it in 2018 as a way to process the multitude of things that were happening to and around me. It provided an outlet to give a voice and insight to what it was like to be a cancer patient raising two young kids. I had hoped that it would help dispel the notion that “It can’t happen to me or anyone I know”. I wanted to be heard and the story of my journey told.
When I received some comments about my blog posts but doubted the real impact. I often told myself that people were being kind in acknowledging what I had written. In posting I was being very exposed and vulnerable, something that’s still uncomfortable but there’s beauty in it. There’s a raw sense of what’s real and not trying to pretend to not feel pain. Life is painful. My attempts to avoid pain only lead to more. The journey is how you deal with it. What you do in spite of the pain and even accept and embrace it is what matters. It’s easy to label things as what is considered “good” or “bad”, but it’s a matter of perspective. What we sometimes perceive as being a bad thing or a series of unfortunate events sometimes turns out to be something good in disguise. How do we know what’s good or bad then? We don’t. The “good” and “bad” experiences have made you who you are today. The failures, losses, and rejections have all played a part in becoming you. Many people may say it would have been better if “this had never happened” but how do you know? It may have been better, or it may not have been better.
In the last 3 weeks I’ve been contacted by 5 people who have read my blog or posts in Melanoma support groups and have shared with me their own personal stories. To say I was humbled is an understatement. It shook me to my core that something I had written had helped someone else and provided comfort and guidance. To others it was education and insight. My hope when I started writing was to find some comfort myself and make one life easier. The message may not reach many people, but I’m truly humbled by the stories of others that I have heard over the past few weeks, so thank you.
I have several posts that were started over the past year, but never finished. Would it have really mattered, who knew. Now I’m inspired to return to where I left off and continue it. Here we go…
I’ve been thinking about this post for a while. What do I wish people knew? What would I say to someone currently fighting to help support them? What would I say to their family/friends?
A common reaction I hear people say is “I don’t know how to support them. I don’t know what to do. I don’t know what to say”. People want to help but don’t know how. If you’re one of these people there is no shame, but I hope that this post will help you know how to support your family member/friend who is a fighter and survivor. This is not a comprehensive list but the things I’ve seen myself and in several support groups.
For those survivors and fighters:
*Take one day at a time, nothing is more important than your health and getting better. Put other things aside and focus on you.
*Look for the positive things in your life and things you’re grateful for. Let this list be your support and comfort.
*Find your peace and a way to feel centered. Whether it’s prayer, meditation, journaling do something to find a stillness and peace within yourself. In a difficult situation where so many things are out of control, find control within yourself. You may not be able to control everything but find something that’s constant.
*Once you find peace with yourself, find peace with others. Making things right and dissolving conflict will lessen your stress and help put your heart at peace. No fight is worth it.
*Advocate for yourself, you’re not a number or a file.Listen to the doctors advice but also ask if it makes sense for you. You know your story better than anyone. A second or even a third opinion is essential. Do not be afraid to say no.
*Think about what you want in your life. What risks and chances can you take? You’ve got nothing to lose, don’t hold yourself back. Take this time to re-evaluate your priorities ad change your life. Every morning you have a new opportunity to have a great day.
*Know that other people don’t know what to say to you or how to act. People will ask you “How are you?” And all they really want you to say is “OK” or “Fine”. Some people don’t want to or aren’t capable of hearing the whole truth. You find out who are your true friends and the ones who will support you every step of the way. Be prepared for surprises and disappointments.
*Find a way to surround yourself with supportive people. In person or online. There are online support groups for each health care issue. Connecting with other people across the world who are going through the same treatment is so helpful. Many pregnant women turn to online forums and communities to ask questions, vent, and support. This is also available for patients and caregivers online.
*It’s never over. A friend told me once that there’s life before and life after cancer. At first I took the second part to be much worse than the first. But it doesn’t have to be. It changes you but sometimes it makes the picture more clear.
*You becomes survivor the day you’re diagnosed. Everyday is survival.
*No matter how stubborn you are, you’ll need to ask for and get help. It’s okay. You don’t have to do it all. Take advantage of the services out there and friend/family who offer to help.
*If you have children, look into and sign up for free group therapy for kids. This was an amazing thing for my oldest son and enabled him to talk to other kids with parents who had cancer. It’s a non-threatening environment where they can ask questions and express their emotions.
For families/friends of survivors and fighters:
*Number one is show up. Be there. Do not say “I’m sorry” and go away. Just being there every step of the way means the world.
*Make time to listen. Ask how are you really doing. There is not OK or Fine. You don’t have to have all the answers, no one expects you to. Just be there.
*Accept that there are good days and bad days. Be there for both. Highlight the good and listen when they’re talking about the bad days.
*Help the person make peace. Forgive them for anything they’ve done to you. This will lessen your burden and their burden.
*Take care of yourself, while you’re there for them pay attention to your own emotions and find a way to process them.
*Put a smile on their face with a surprise or a joke. Make their day. It’ll go a long way and mean a lot.
*Know that there could be a lot going on underneath the surface. Just because a person may “look fine” doesn’t mean they’re not in pain.
*Show up and be there. It bears repeating again and again because it’s so simple but very important and means the world.
My husband and I went to Alaska for two weeks. It was an amazing vacation. I packed each day with a new experience and things I’ve always wanted to do. We went white water rafting-something I’ve wanted to do since age 12. It was thrilling and such an exciting excursion. The 34 degree water drenching you as the raft bounces up and down through the river rapids. We hiked an average of 5 miles a day up mountains, through the arctic tundra, and rainforests. There were multiple moose, bears, doll sheep, and tons of bald eagles. The freshest seafood including salmon and crab was everywhere. We ventured out to go whale watching and saw Killer Whales and Humpbacks with their babies emerge out of the water and dive below. I walked across a suspension bridge 500 ft high when I’m afraid of heights and on the return trip doing it with no hands. I dreaded and looked forward to that day for a long time. I wanted to face my fear of heights and go for it. It was amazing to take that step. The lush green forest and fresh air was unbelievable. Even though each day I was beyond exhausted it was worth it. I’m so glad I took the time to do those things I wanted to do for so long. There are numerous memories that were made that will always be cherished.
I knew the next step was coming, but tried not to think about it on vacation. It finally hit me today that in two days I’ll be going down to MD Anderson for my next appointment and next set of scans. I got very emotional today thinking about what may happen and the uncertainty. In March they found one new lung tumor–after I had clear lungs for 6 months. The two brain tumors were stable. There was also a possible new tumor in my liver. The oncologist said that they were too small then to do anything, it would be a wait and watch situation. Waiting and watching. This is hard situation as there are no answers. In the uncertainty you grasp for anything, supplements, vitamins, diet change, mediation, therapy, whatever possibility is out there. Each thing hoping that it makes a difference but never knowing your fate. It’s extremely difficult to prepare yourself for all sorts of scenarios and their impacts.
This week may mean more waiting and watching, the tumors could be stable or gone, there could be more tumors or they could have grown, and I may/may not start treatments again. So many possibilities to try to prepare for.
It may sound naive and foolish but I wish that I could be completely healed and this monster would leave me. I wish I could go back to a non-cancer life when I knew I’d have many many years to live and a lifetime of memories. There would be no lasting side effects and no chronic pain. It’s difficult to accept and heartbreaking knowing that that vision may or may not happen. So hard to find peace in so much uncertainty.
Every three months I go to MD Anderson for tests and scans for check ups and make sure that the melanoma is stays stable or gone. Gone is always preferred of course. The days leading up to each appointment are filled with hope, anticipation, anxiety, and fear among a million other emotions. One set of scans, one appointment can either bring tremendous relief for the next three months or great fear and worry. I began my 6 hour round of appointments optimistic and eager to get it over with for the day. Waking up at 4 am, gulping down a supersized drink of sprite and barium, being poked with needles multiple times, breaking out in hives from the ct scan contrast, and my favorite having a mask put over your face and going in a tube for half an hour where there is no way out and no movement for the brain MRI. All of these are parts that I dread each time but make the best of it and tell myself to make it through each one. If I can do that I’ll treat myself with a snowcone or other special treat.
This week I went in for my test and scans. I made it through each part of the tests that I force a smile and hope it ends soon. A good clean scan is worth it. The last six months had yielded clean scans in my lungs and three brain tumors that remained stable. I was not in the clear, but on the right path and the worst was behind me…until this week. The nurse assistant came in before the doctor and told me the news like ripping off a bandaid and then left the room. You have a new tumor in your right lung and a larger tumor in your liver. One brain tumor is gone and the other two are stable. Oh but don’t worry, I’m sure the doctor will put you back on immunotherapy with other drugs. With that she left. I sat in shock for a minute trying to process before breaking down in tears. I couldn’t believe that after the hell I endured this past year with immunotherapy that it was a strong possibility that I’d be back on it again with chemo pills. I had not feared the cancer coming back a third time because the new medicine was supposed to teach my body to fight the cancer cells for the rest of my life. What the heck happened? Did it stop working? A million thoughts raced through my head when the doctor came in. What was I going to do? Am I going to go through that hell again? Am I going to live? He looked at me and saw my tear stained cheeks and immediately gave me a hug and told me not to worry and not to cry. Telling a cancer patient not to cry is kind of a tough thing to do. There’s so many emotions that put you on an endless rollercoaster. The plan and next steps were outlined. Watch all areas for now, come back in three months for another set of tests and scans. If the tumors grow or multiply then they’ll put me back on the immunotherapy IV I went through last year and also chemo pills. They’ll also do a biopsy on the liver tumor if there’s continued growth. So waiting game for three months. Three months of terror and uncertainty were staring me in the face.
Like a lot of people, I like to be in control. I like knowing what’s going to happen and when. The problem is that this is completely out of my hands and I have no control. After the initial shock and processing comes the reframing and refocus. What can I do, what is in my control? My attitude and mindset are the biggest things. Taking some time to reframe and refocus I’m choosing to make the decision to remain in the present moment. I know the path and steps that may or may not come, but obsessing and worrying about it won’t help and in fact it’ll make me miserable for the next three months. Instead, I’m going to return to enjoying the little things that make everyday worth it. We tend to focus on those for a moment then the list of things to do and stress of everyday life returns and so many things are taken for granted. I learned yesterday that I can’t ever take one clean scan for granted, it’s never a given no matter what. I can take time to enjoy the present moment. I can go on bucket list vacations. I can slow down and choose to have fun and laugh. I choose to be at peace and enjoy the present moment. I choose to live my life.
Courageous Perseverance 