“Hi, are you new here?” a lady dressed in cute workout wear with a drapey warm poncho for the cold air conditioning and tennis shoes, knelt beside me as she spoke.
“Brand new, this is my first day,” I replied, as I filled out the digital forms on a tablet that seemed a mile long and I needed to turn back in to keep my appt times running smoothly. Maybe the concern was on my face as I was reading all the documents because I do read things before I sign them.
“Well, I just want to tell you, that… you are in the right place. I don’t know what reason you are here, I am a caregiver to my husband who is a patient here and I just needed to tell you that this place is wonderful and you are in the right place.”
Tears welled up, and I thanked her for telling me that as she patted my hand.
“ Okay, I will let you get back to your stuff. I’m sure I will see you around.” she smiled and returned to her laptop mobile office setup as she camped out in that waiting room.
This took place in only one of the many waiting rooms I have been in since this whole thing started. But the impact on this one - it was bigger. What a bold thing to do, right? My husband was with me on this day and he said, I think I needed to hear that. We both did. And just like that another human made a huge impact on our lives, we ran into her several times after that and exchanged great places to eat and fun things to do during the short amount of time that we were not at the treatment center. I will never forget the beautiful human beings who crossed paths with us, and I pray for them and wonder where they are now. I see their faces, even the one who looked at me on the day I left that place and said, “Ashley I think you have already made up your mind and know what you need to do, and it is okay to go.” She was a very chatty lady that I sat with for hours while we got our infusions. She was there for Lyme Disease, and there were so many from Canada who shared about how universal healthcare is NOT the answer and I learned a lot about other types of pain, health journeys, and diseases as well.
Waiting rooms, are pretty much all the same physically speaking with four walls and uncomfortable chairs. I have seen some really sad ones, and then some super nice ones. Chairs are important, no one wants to be there but if you have to then at least make sure it is clean, uplifting, and comfy. There are so many “waiting areas” of life - sometimes we voluntarily wait in lines to get a great deal on Black Friday for a loved one for Christmas, sacrificing sleep and sanity. Other times we un-voluntarily wait on the phone to handle something important and get more impatient as we go because we don't get to talk to a real human being only to get dropped and start over. No one likes the wait. Currently, I am in the “waiting room” yet again - the trial has started and I walk into the unknown each week - and let me just say I am tired of it. I tell my kids that when it comes to complaining and whining what do they do? Nothing. Exactly. Eyes up, keep going.
Here are some scriptures that I remind myself of during these waiting times:
Psalm 27:14 ESV Wait for the Lord, be strong, and let your heart take courage; wait for the Lord!
Proverbs 3 ESV Trust is in the Lord with all your heart, and do not lean on your own understanding.
Philippians 4:7 NLT Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Colossians 3:23 NLT Work willingly at whatever you do, as though you were working for the Lord rather than for people.
Romans 15:13 NLT I pray that God, the source of hope, will fill you completely with joy and peace because you trust in Him. Then you will overflow with confident hope through the power of the Holy Spirit.
Matthew 19 NLT Jesus looked at them intently and said, “Humanly speaking, it is impossible. But with God everything is possible.
Growing up with a father as a musician, I like to think it is just in my blood to appreciate good music. I was raised on the good stuff - Chicago, Three Dog Night…and so much more but even Reggae music was mixed in there. Come to think of it, that's probably why I love Latin music and so do my boys. Something about it just instantly makes you happy and dance - prove me wrong! Back in the day (look how I just made myself sound 80 years old) I used to set my 6-disc CD player up with two tape decks, and then I would record Casey Casum's country countdown because then I could listen to my favorite songs whenever I wanted. As I got older the CDs and ability to burn them and make mixes were the new thing. Then the MP3 players, iPods, and iPhones changed the game yet again. My generation I think has witnessed so much transformation, because we are the last ones to know what life was like pre-internet. We are adaptable, learning new things each time tech changes the game. We witnessed the birth of dial-up and learned how to use it all from DOS computer systems and Oregon trail on through until today's iPhone/ AI implementation, and everything in between. Kids today can yell the name of their very own robot assistant to play whatever song comes to mind and answer questions, with no wait. So many things in our culture condition us to not require any “wait time”, making everything more convenient. Our kids don't know what “it’s worth the wait” means unless we go out of our way, to teach them. There are a lot of wonderful things that we can do due to technological advances, but with that, we are learning that our bodies have needs mentally and physically that we are sacrificing to do so. Mental health statistics show deeply troubling stats, particularly for growing minds, and we have to find ways to be intentional about our time. The question I find myself coming back to - is how will you make the most of your wait. While you wait on your results from a test, or you wait for a response, or you have done everything you can up to a certain point in a process - will you sit and distract yourself from reality to “escape” or will you dig into truth and scripture further helping you during the process. I think we all need to do the latter primarily, but you also need a healthy distraction sometimes. With the phones in our hands boy does that make things like willpower a lot harder - have you ever noticed the bitten apple on the back of those things? I don't know something about it just seems to correlate with the temptation, addictiveness, comparison, and staying in the know. There is a lot of wonderful light that can be found on there too, but we have to again be intentional about it or it quickly gets out of control, I am guilty in this area for sure.
The waiting rooms of life are when we struggle, myself included. I would much rather be planning, preparing, doing, implementing, actionable to-dos, and done. Listening is imperative to all things; such as gathering information and assessing the task at hand. Listening is the first thing you are taught growing up when dealing with authority, working well with others, gathering research for a demographic in business such as your customer, and when you are trying to retain information. So why is it that when our body tries to tell us something is wrong we don’t prioritize listening? Is it because if we did we would miss out on too much, not hit a deadline, or our kids would be home from school and we would miss work, or we just don't have time to be sick? Those scenarios may be true, but how long do you mask a problem until it compounds into something more that you then don't get the ability to make any choice about it and you are forced to slow down and take care of it? Just thinking out loud. Here are some ideas for what you can do while you wait, or ways to make the most of your time - intentionally.
Waiting Rooms of Life Tactics
Get Out
We would take walks around campus if we had time in between or before appointments, anything to avoid sitting in those waiting areas and soaking in any of the yuck from within the walls of the hospitals. They are traumatizing enough. I plan to propose we make hospital common areas like health oasis areas - I have so many great ideas. I have so many changes I want to present to someone who would implement them, but again for another day in the future once I have put the C behind me. But getting out in this context primarily means in nature, it has so many healing benefits.
Getting outside benefits:
Reduce stress and anger
Increases the feel-good feelings of kindness & generosity
Reduces the risk of psychiatric disorders
Improves working and short-term memory
Physical movement helps overall (walking is something almost everyone can do)
Work Out
Physical activity directly affects the brain as well as a lot of other wonderful benefits within the body. Mainly it decreases anxiety and depression. Even very small intentional movements matter, you can stretch very discreetly in a chair in an actual waiting room. There are so many ways you can creatively add movement into your day with no excuses anymore. Take the stairs, meditate in the car to a guided practice through an app, and look up stretches and somatic movements on YouTube. Make it a priority. Put on some music and take 15 minutes with no interruptions.
Clean Out
This one is probably my favorite, I love a good clean out and it makes me feel better. Put on a good audiobook and headphones and tackle and organize a space, even if it is just a junk drawer. Clearing out clutter and making it a pretty space that feels good to be in instantly makes you feel so much better. I love organization and there are ways to use what you have and also inexpensive ways to get the looks from the pros it just takes some planning. Just get started and purge what you don't need, measure the space, make a list of the areas so you know what you need, and complete one area in a day all while listening to bible stories or a great book and you will be feeling awesome.
Clean out added benefits:
Controlling the environment
Increasing focus
Improving mood
Go Out
By yourself, spending some time out and about. I didn't realize how much I loved being alone in my car which seems to be a place where I spend the majority of my time blasting music, running errands, to and from practices for kids, all the things. When I had people driving me around 24/7 to and from appointments - I missed that. Even just going to the grocery store and shopping versus doing a pickup to save time can be therapeutic. Take your time, grab a coffee, and enjoy not being bothered by questions and needs of other people. Silence the phone, you are not a doctor and everyone doesn't need you all the time. They will be fine. It sounds so basic but again, due to convenience and schedules we leave no time for leisure anymore and we need it. What you will notice is the older folks who are out and yearning for conversation amongst real human beings. They just want to talk to people - and it may be their highlighted activity of the day so help them out and give them something to feel good about - and a little faith back into humanity.
Doing these things will also allow you to leave space to hear from God. Remember what I mentioned earlier about listening? We don't leave space or time for that either. God speaks to each of us in different ways. Some just know, others get a feeling, some see,...there are examples of this throughout the bible too. If you're not sure what ways God speaks to you - spending time in your bible will help you know if and when that is happening and be better at recognizing it when it does.
The Diagnosis + Plan A, B, C & Now
Advocating for yourself is a key aspect of any health journey. People talk about it but what does that mean? It means speaking up, asking questions, taking notes, and keeping a binder with all your information, and making lists so you don't forget during your limited time with the doctor(s). No one is going to take your hand and say this is what you should do. The doctors will present you with what will happen and what they think should happen. But if you are prepared you can ask direct questions so that you can fully understand what you are dealing with and getting into instead of agreeing and then feeling like you were not fully aware of the repercussions. That's why they always ask if you have any questions, they are willing to answer them but if you don't ask they don't always disclose. Doctors want to help - but their parameters are sometimes limited. Direct questions even the ones you are scared of the answers to, will allow you to make the best decisions regarding your health both short and long term. So think about it, prepare for it, and write things down - symptoms when and how you felt - what you ate that may correlate. For example, I had chest pain after a special type of port device that isn't common was placed, and I was scared and worried it was late in the evening. Turns out it was heartburn, but if I reported chest pain and acted on it as directed to go to the ER without documenting, calling the night nurse, and explaining the feelings I was having - it could have been messy. I also consulted with someone familiar with heartburn we figured it out and it was just that. Thank goodness - but that's the hardest part. Knowing what is from what! Especially if the only time you had heartburn was 11 years ago when you were pregnant and it wasn't even that bad - but at the time you thought it was. More seasoned people probably would know things like that because they had experience, I'm a newbie.
I was the advocate for my husband during his 2-year health situation. It was a long hard road, and we spent lots of money to get him healthy. There were times we were not sure how that was going to work out but God led us, and we used our minds and business sense to build and prepare for whatever may be next. Many of the things I learned during that season or trial of our lives prepared me for the one I am now faced with. As early as 2015, we changed a lot of what we were doing and putting into our bodies and started getting serious about it. That year went from the best year, to then a very hard two years of recovery, and then more great years before the next storm. All of that research and information and a lot of products I use and know about now were what I needed when it was time to get serious about myself while I waiting on my official diagnosis. My diagnosis was a doozy, had I ignored it or put things off any longer the story would have played out very differently for me.
The main symptoms that I experienced were the following:
Dull lower back pain - similar to what you get before you start your period. I was using the heated seats feature a lot in my car now that I look back on it. I didn't take anything for the back pain at all, it wasn't consistent.
Graduating discomfort - if I sat too long which at the time I was working full time from home in a computer chair and my back seemed more and more irritated. I ended up getting an ergonomic cushion which helped, seeing a chiropractor which also helped, and being more mindful of my posture. After switching to a new job, the dream job I might add, this improved but still bothered me on long office days. But being more flexible and away from the desk helped a lot. I always spent my summers at ballparks back when I was traveling as a family for my husband and even now with my boys who are both involved with travel baseball. I noticed that if I stood for a long time or sat for a time I was again very uncomfortable still in that lower back area. And if I squatted down in a yoga-like pose that was relieving. I had an annual OBGYN appointment coming up and I had decided to address it and ask for a referral during that appointment just knowing it takes a while to get into someone and I already had that one on the books. It couldn’t arrive fast enough.
During that appointment, the usual exam was performed, and I was told everything looked great and that we would see you next year. To that, I said, well no actually something isn't right and I explained that I was aware it was not his area of expertise, but I did feel more pressure than usual during the exam - to which he immediately said let's check again and found the exact area I was talking about. He then ordered an ultrasound and said we will take a look at that next week. As I walked past his office he stopped me and said I want you to come back tomorrow for that ultrasound. I knew then that it was not a good thing, but I was thankful for his urgency and concern. He is a wonderful doctor. What if I had let it go? What if I didn't listen to my inner voice when it said - mention it, Ashley.
The primary original tumor was in my pelvis, it had grown between organs and was pushing up against the back of my vaginal wall, and then it had invaded an area which was where the symptoms had arisen. I was paired with an oncologist and told to start chemo + radiation immediately that I was in Grade 3 and after 4 cycles of treatment, surgery would take place. Then possibly more chemo but we would need to evaluate after those cycles. If I had to have the surgery that would mean a coloscopy bag and loss of all the other organs in that pelvic area although not cancer-stricken they take surrounding areas to get clear margins and everything is pretty compact in that area. In other words, life-changing surgery. I sought other opinions, and my local team was split on what should happen after the original treatment plan. I knew I didn't want the surgery, but I needed to do the aggressive treatment because top minds in Neuroendocrine explained that this type (which is typically sooner than later and within 2 years) when it comes back it doesn't usually go to the same areas, but it can go anywhere in the body and it likes to go for the main organs. So if we could get clears on the primary area taking it out to be safe isn't always the best approach with this type. It could be lost for nothing. After the very first dose of Chemo, all my pain was gone. All of it. So I knew it was working. There were trade-offs to that of course, but my radiologist was phenomenal and did not sugarcoat things and told me exactly what to expect and how to care for myself and he will forever be my favorite radiologist.
Every time I went into the cancer offices I was asked, “How did you find this?”.
“Aren’t you glad you went to your OBGYN appointment?” At the time I thought it was just because I was young, and I didn't fit the profile of someone with cancer. That may have been part of the curiosities but the part about this that is more concerning we would find later is that specifically the type of Cancer I have and the rate it multiples is so high, that it is not found until it has spread throughout the entire body. When those symptoms present particularly where mine presented especially, is one of the last places it shows up to cause pain and then it is too late to treat. It is a silent killer - the worst - this is why the mental part of this journey has been so hard to process. Because otherwise, I felt great. Cue the waiting room again.
Fast forward to completing the original treatment plan, I knew at this point I wanted to be with a specialist so I switched to the best one in the state I could find that my insurance would cover. I fought hard to get to him because they wanted to place me with someone else in his practice but she was not listed as a specialist. As a marketer, if you're not adding it to your list of credentials that you are an expert in the field you probably have been deemed that by default. This makes sense now because there are a lot of people who due to insurance cannot see the doctors they need so they have to find someone to take them - so through FB groups and networks, I found the one in Indiana who sees the most patients with cases like mine. He had never seen someone with it where I had it that didn't also have it everywhere else. He was hopeful but he said you are a rare upon rare. He also asked how did you find me?
We waited for the body to calm down to do the scans, due to radiation and inflammation the body is put through a lot so a scan immediately after would not be most accurate. And ANY residual would result in surgery. We waited the recommended 6-7 weeks and went back. I felt great during this time. My body was tired here and there but I figured it was due to muscle loss and fatigue from all it had been put through. I was convinced it was gone. And I was right -mostly. A piece of positive doctor advice I received was, that most people don't look, sit, and act like you do after being put through so much - you had a strong chemo regimen. You have done a great job. To which I cried, I had not been told that yet and that was the moment I realized the power of positive encouragement and how necessary it is even if the person doesn't know they need it. The scan of the pelvis and the scope came back all clear. The tumor was gone, no surgery. This was a miracle. I had avoided a huge life-altering surgery, having full function of all things in the area with no other complications. This was God. However the body scan showed progression, it had spread to the liver now 6-7 lesions. The guess was that once the chemo stopped it picked back up elsewhere. A believer and a friend said something I will never forget when I met with them to talk about my situation from a biblical perspective and I had asked to arrange for the elders at church to pray and anoint me with oil. The bible says in James 5:14 NLT Are any of you sick? You should call on the elders of the church to come pray over you, anointing you with oil in the name of the Lord. After explaining the situation and that my next step for treatment since progression, he helped my perspective when dealing with being given a short timeline. He did not claim to be a prophet by any means - just a believer and an instrument of service to God, but he was a retired medical professional so he has a unique perspective and familiarity with having those types of conversations with patients and he said I think that's a down payment on you Ashley, that's a miracle in itself. I felt validated because while I knew the spread was bad I was not at all disappointed by the fact that it had worked. But I was feeling the spiritual mental attacks although I saw that as good. Just to be reminded that no one knows their days here on earth. People drop dead every day from heart attacks with no warning. I knew this already of course, but when you have been delivered news like that - it is so helpful to be reminded of the truth. The devil uses your emotions, fears, and the unknown against you. He is a liar, repeat the truth until you believe it.
Next, I started Immunotherapy - it was a longshot with no data on my type specifically but one we needed to try because he said he knew what it would do from here. After 3 rounds with 2 drugs, the scan showed it took away the original (again) but spread to more areas: the spine, ribs, liver (many), and the left breast (but we couldn't detect it). That was the news that I got before Christmas and we chose to go to AZ. In AZ I received fractionated chemo and other methods which left me feeling great and we got an overall understanding of my body in particular with extensive testing of labs and off-label drug use and natural methods. The labs that took way too long to get back actually got back to me the day before I started this clinical trial, I think this type of testing (DATAR) should be done for everyone right at the beginning to complete the individualized approach and if we are trying to help people it is imperative to understand all the genetics, viruses, exposures, etc. Each person's body reacts to things differently. Another positive moment was when I met my doctor in AZ and he and his colleagues stated, the silver lining here is that your body did respond to treatments. That's what I was thinking too, but conventionally it's a fail and move to the next tier. They also told me they were so glad that I did not listen to the few month's timeline - because that alone can send a person to go sooner because they are constantly thinking in that way. Your vitals are great, and your numbers and bloodwork are great. Mindset again - easier said than done and I would be lying if I said I had not calculated when that was and was setting goals to get there and beyond. Fight the negative thoughts with scripture and worship music when they creep in. It works.
Here in Alabama, I have started the clinical trial. I am 1 of 4 patients in the United States. I am the only one at my location, the others are in New York. It started overseas and just opened in the States. I am the only Neuroendocrine patient, the others are small-cell lung Cancer (they are very similar-acting cancers and you have to have specific pathology markers to get into this). I am 4 doses in, the second one had to be repeated due to a reaction that I had shortly after the infusion. It is not uncommon, it is kind of expected to some degree but out of caution for my safety, we want to make sure we understand how my body reacts and make sure it can be managed because the side effects can be really bad, and in some cases fatal. As a family, we are staying near the beach and we drive an hour to my hospital. This is not a vacation by any means, everything is focused on healing for me so each week I get hospitalized for treatment for a minimum of 24 hours to be monitored, it's longer if there are any complications or reactions. So between that and then the symptoms from the study drug which can take a few days of me feeling off or tired - there isn't a whole lot of time to do fun things. The weather has been hit or miss, so when it is nice we take advantage of walks, shell collecting, and hot gluing them into creations. My Grandparents were snowbirds and Grandma used to make little shell animals and bring them back to us when my sister and I were small. I think about that small gesture to this day, so we figured we should do that too and we came up with creative designs.
I have a consistent nurse again which is great because she gets me. Having new people and starting over and having to explain things gets pretty exhausting. She knows that I am not one to call for silly stuff so if I do it's important, and she comes quick. Nevin has also secured someone's grandmother's jambalaya recipe so at some point we plan to have a large feast back home. The staff here is great, they are caring, attentive, and careful. The dose I got today, was triple what my last one was.
Another word for waiting is patience, which is one of the fruits of the spirit. It also makes me think about a lot of "patients in waiting rooms". I know - it is late I should go to bed. : )
I am trusting that God is miraculously intervening on my behalf with this drug, I am still praying and knocking on God’s door asking for complete healing. I am getting antsy I want to put this “chapter” behind me and get back to living a life that is not centered around my cancer. I cannot wait to get back to Indiana and spring clean my own house, plant my garden, fix up the coop by adding the marigolds and rosemary outside, and then add many many more chickens and lots of other furry animals that my husband says we don't need. I want to load up my car for the baseball season with all the things for all the tournaments and weekends we get to spend together as a family in the sunshine while we cheer on our boys and hug them and tell them how proud of them we are regardless of if they leave with fancy hardware or not. I want to watch my hottie husband coach and do what he loves with just as much heart and leadership as all those years before. So while I continue to check myself into the hospital and climb into the bed and receive this drug, I will keep looking forward - because I need this and God - to get there. And I will get there. I have to get there. God wouldn't lead me this far to fail me now. He just won't.