Relaxing into Uncertainty

Another scan, some new perspective, and the ride continues. It is strange to think it has been a full month since I was in the ER after my most recent headache scare. It is even stranger to think it has been 6 months since that awful Monday in March when I held my family and tried to process what it would be like having 3 months left to live.

I know the world is learning how to live in the unknown in new and scary ways. I know the uncertainty is so real for everyone right now. I know I am not alone in this feeling of unease. If it helps I am holding on to hope for all of us.

I had a scan this past week and it showed stability. This means the scan looked the same as the previous scan, unchanged from September 30th. I have been on a hefty but slowly declining dose of steroids since the ER that likely has been working to treat what my doctors are now calling inflammation in my brain (radiation necrosis). On my scan, there is what the doctor calls “non-specific” enhancement in the treatment area that shows no signs of a mass or cancer. Basically, vague lighting. About a week ago, My doctor presented my case to a new board of neuro-oncologists/neuro-radiation oncologists at NIH. He called them an “impressive board”. Their opinion was that I was experiencing radiation necrosis vs. disease reoccurrence in any form. Let me re-phrase that…. they think I am cancer-free. This has been the debate since March, the roller coaster ride of what is really going on with no concrete sure-fire method to prove either hypothesis.

Most of the conversation I had with my oncologist after this most recent scan was about creating a plan to treat the “radiation necrosis” with something other than steroids. I’m going, to be honest I was struggling. I am still processing just being okay. I’m still processing this back and forth of disease or inflammation. Being okay or not being okay. Something that is trying to kill me or something I can live with it. It took me a while to get on my doctor’s page with creating a plan for treating the “radiation necrosis” when just last Friday I had to have a needle stuck into my spine to extract spinal fluid and make sure that there isn’t cancer running through my brain and spine. I was struggling because after my September 17th scan my doctor labeled his email to me “stable disease” and after my ER visit my doctor called me in a panic and put me on 16 mg of steroids a day, the most I’ve ever been on since my cancer journey began. Than he ordered a series of tests and set multiple new consults. In all fairness, I am grateful for his cautious approach. I would much rather have him overreact than underreact with my life but that doesn’t make managing the ups and the downs any easier.

Adrienne and Derm’s wedding celebration 🎉

This debate of cancer vs. radiation necrosis is not new but this does feel like a larger wave pushing me closer to the shore, to a safer and more stable place to rest and move on from.

Views from running in Richmond

What is growing from this uncertainty is my own faith. Trust in my own intuition. While my doctor is very transparent and honest about the reality of the unknown I can feel the shifts in his opinion and his own fear when he leans from LMD to necrosis. If I’m not careful his fear can consume me. I’m very grateful for my doctor and like any healthy relationship, ours works so well because of communication. He listens to me and I trust us to process and come up with the best plan for me every time. He is brilliant and humble and my heart is full of gratitude for him. I thank God for him every day even as I’m rolling my eyes staring at my puffed up steroid-ridden body thinking the 16 mg of steroids was such an unnecessary overaction. One important lesson I would tell anyone going through cancer is do not to settle when it comes to choosing your primary oncologist.

My pumpkin (it’s a witch)

First pie I ever baked …tasted better than it looks 😉

So I am going to relax into the uncertainty. I anticipate this roller coaster ride starting up again but right now, I can rest in being okay and focus on the joy of living this life. Lately, it looks like a lot of yoga to help connect me to the moment the steroids work hard to detach me from. Enjoying the fall season in the most basic ways with no shame. Yes, pumpkins, apples, baking, and all fall things. I am grateful to have lots of time with Jeff in Richmond and just being us. I’m training for a half marathon because the steroids leave me with a lot of energy to expend and I’m very busy with work as a therapist as the world tries to cope with this pandemic. Thank you all for your thoughts, prayers, and continued support. It helps make every day better.

Jeff and I

❤ Amy 

Riding the Waves

I know it has been quite sometime since I have updated everyone in this space. April to be exact. A lot has happened but not much as changed. Here’s what I mean… There are still some pretty big unknowns about what is really go on in my brain. I still get on and off headaches, I still go on and off steroids, and I’m still out here living life as best I can. Running, working, spending time with family, and surviving this crazy pandemic.

Let me catch you up on my recent scans. From April until July I was having monthly scans that were all stable and showing no change. This was welcomed stability in my personal life as the world around us continues to be in chaos. However, as I weaned off steroids I began to experience symptoms in the form of nausea and headaches on and off since June. On September 17th I had my first scan that showed something. A very vague and non- specific enhancement in one spot that was previously flagged as possible LMD. My doctor said that while somewhat concerning, in the absence of clinical symptoms reflective of LMD, he did not want to lean too far in either direction. He felt we just needed a another quick follow up. My radiation team at UMD reviewed the scans on Sept. 17th as well and thought the changes were more reflective of radiation changes opposed to cancer at this time.

I was scheduled for another exam on October 15th until about 4:00 am yesterday (Sept. 30th). When I woke up with a pretty intense headache and grew increasingly concerned when it was not responding to my steroids in time for me to get to work or hours after. I called my doctor who happened to be out of his office (the man is never out of his office) I resulted to calling the triage nurse who sent me to the ER. Jeff came home from work and packed my mess of a self in the car to take me to the ER at Hopkins. We made the trip to Maryland so the needed scans could be easily read and ordered by my doctor. On the way up, I thanked Jeff by throwing up all over his car which luckily was mainly the water that I was desperately chugging to drown out the headhache. None the less, sorry boyfriend.

We got to the ER, I managed to pack some clean clothes I could wear while I waited hours for my scan. I was able to talk to my “never takes a true day off” doctor intermittently who managed to heighten my anxiety or maybe just my frustration by telling me my symptoms were consistent with disease progression before we even got the scan back (or had a detailed conversation about how I was feeling). Love you doctor M and appreciate your dedication but seriously lets all take a breath. Homegirl needs a scan, a shower, IV steroids, maybe some pain meds, and definetly sometime to process.

In his defense, he has made it known he will not shy away from bad news because he values caution and cares too much to get it wrong in the face of my life. I wouldn’t have it any other way, but I reserve my right to complain when I think he is jumping the gun (or talking to the tumor board too much).

The Sept 30th scan did come back with some slight in enhancement to the same area of the Sept. 17th scan with a growth of 33-38mm. Sounds small to me? But i’m bad with numbers. I haven’t been able to speak in detail with my doctor about this yet (or any of my doctors) but I did read the radiology report detailing the slight increase to the area mentioned and nothing else new or changed was discovered. My doctor also decided my vomiting in Jeff’s car warranted 8 mg 3x a day of steroids, the most I have ever been on so hello Chipmunk cheeks and maybe some payback for Jeff?

Anyways, I know my doctor is concerned and I do always listen and respect his judgement but to be honest things aren’t adding up for me yet. I’m going to need some convincing, conversations, and consults before I buy into beliving I have diease progression reflective of LMD. Yes, where the scan is showing enhancement would reflect LMD and to be quite honest even with my nausea and headaches every doctor, even my own at different times, has told me I am not a clinical fit for LMD at this point. I have a hard time believing that my cancer that grows quickly and historically progresses fast in round nodular balls showed up in March, shrunk in April, and has just been chilling until September when it decided to show some tiny unspecific growth not looking or acting like my cancer. I have an even harder time believing my already fast growing cancer managed to progress to my leptomeningeal cells covering my brain in a form of metastasis and then decided to chill and stay put for 6 months. Meanwhile, I contine to run daily work a 40 hour schedule, and have very little symptoms. It could be God, it could be the chemo, or it could just be wrong. I have an easier time believing I have a condition called radiation necrosis (backed by my radiation oncologist and neurosurgeon) which generally doesn’t move much but can change with inflammation, is non-specific in presentation, causes nausea and headaches, and changes/reacts to steroids. Maybe I’m just being optimistic. I plan to listen with all ears to all my doctors and I know my doctor will listen to me as well. So right now I am riding the waves of the ups, and downs, taking all prayers, and remaining optimistic. Everyone who lives a life with a cancer diagnosis knows things are never straight forward and learning to hold tight to your faith is everything in turbulent waters. Thank you guys for keeping me in your thoughts. As always it means the world to me ❤ Amy

Cautiously Optimistic

Cancer is a roller coaster and right now the ride has me pretty dizzy and confused but I’m happy to share I am feeling very cautiously optimistic. I want to start with a very strong heartfelt thank you. I truly believe the good news I have to share in the post is directly related to the thoughts, prayers, love, and support from all of you. My tribe of dedicated supporters and loved ones.  I could not get through the turbulence of living with rare cancer without the support from so many of you.

On April 23rd, I laid anxiously in the brain MRI machine not exactly sure what to pray for other than strength. Given the grim diagnosis of the John Hopkins Tumor Board related to two new areas for tumor recurrence and the possibility of leptomeningeal disease, my primary hope for results was that whatever transpired on the scan it would be treatable. I just wanted (and still just want) a chance to fight for my future.  In my mind, I was just praying brain surgery round 3 was a possibility and if I’m lucky radiation round 3. 

Instead, I was utterly shocked and confused to receive a very short but positive email from my oncologist shortly after the scan. It said something to the effect of “Amy, I very briefly looked at your new scan and need to go through it much more thoroughly.  Still, concern for cancer and LMD but everything looks improved.”

Let me pause here because I know in my last post I was a little harsh on my oncologist but I truly thank God every night he is my doctor and this message was yet again him showing his heart and how much he truly cares and thinks about me and the little things. For example, my being able to sleep that night. He sent me this message because he knew it would bring me a sense of peace and ease my anxiety to discuss the scan.

During our virtual meeting, the next day, my oncologist and I reviewed the scan and all areas of enhancement (the two areas of concern for tumor and the LMD spots had shrunk). Nothing on the scan grew in four weeks. For reference, during my last reoccurrence, my tumor doubled in size in 4 weeks.  So shrinking? Not expected. This was amazing news that I am honestly still processing. However, despite it being great news it continues to leave me in a place of a lot of uncertainty. There are multiple opinions and possibilities about what this means and at this point (again)  there is no way to know for sure what is really happening in my brain. One possibility is that the chemotherapy pill I was placed on after the March 26th MRI began working really well to cut the blood supply to the tumors and is actively shrinking cancer. Other possibilities include radiation necrosis or an inflammation reaction.

In fact, both my neurosurgeon and my radiation oncologist, after reviewing the new scan are skeptical of any reoccurrence or new tumor growth.  As you all know I am a hopeful fighter but my heart is just not ready to go there yet in fear the roller coaster will send me flying backward. As of now my oncologist and my new doctor at Dana Farber (both of the sarcoma experts and I think the radiology reports) seem to be leaning towards reoccurrence but treatment is working. Either way, I’ll take it. All of this news is much better than where the journey started on March 26th.

The plan as of now is to stay on the chemotherapy which is giving me no trouble, follow up very closely (another 4-week scan) reduce the steroids, and potentially begin immunotherapy which is also expected to be tolerated well. I have a long meeting coming up with my oncologist and we will go over all options, review all of the consults, conversations, reports, doctors’ opinions  (maybe even decide to get more) and then I know together we will figure out the right course of action.

So, for now, I will remember to soak in my gratitude.

Since I will not be jumping right back into brain surgery and radiation I feel immensely lucky to continue living this life I love every day.

These are strange and unsettling times in the world of coronavirus and the need for social distancing but given my circumstances I know it is a blessing for me to be home quarantining and spending this time with my family. Katie, Molly, and I are still running daily,  while Brendan rollerblades alongside us, and yoga continues to be my calm.  Brendan solves all of our technical problems and helps us stay sane and get along. Actually,  I don’t think we would be surviving this time without him. Best decision Katie ever made. Molly, Greg, and their new puppy Captain Duck Puddles quartine with us throughout the week, and weekends and only travel to their apartment when they need a quieter space to work from home. My parents as always are doing everything to help me get through this scary time while bearing the most heat and irritability from me so thank you to all their loved ones who have been so supportive to our family especially them over the past month it means the world to us. Jeff has been in Richmond because he has to go into work and it’s just safest for us to be apart for now but we manage with Facetime and thank goodness someone can pay the bills :).  I am hoping to go back to work virtually in the upcoming weeks and continue to live this life one grateful day at a time.

My thoughts and prayers are with everyone as they navigate these challenging times.  Stay safe, healthy, and thank you again for the prayers. Please keep them coming I  truly believe they are working.

Love,

Amy.

 

 

Harnessing Hope

Hello Practicing Amy Readers. Many of you have heard the news by now that my cancer has returned and I am gearing up to fight for my life again. Round 3. This will be a raw post as I am in the midst of processing, wrapping my mind around being thrown back into this fight, and grieving my recovery.

Today I feel strong enough to share. So I will. Sharing has always been an important part of my overcoming.

Like the rest of the world, when March approached, I was overwhelmed, adjusting, adapting, processing, fearing, and grieving the global pandemic of the coronavirus. I was transitioning to a virtual therapist role at work and finding my resolve to contribute to those in need. Around March 23rd I woke up with a pounding headache. Of course, my initial thought was “oh no I have a coronavirus”, because why not? However, with two more days of pounding morning head pain and no sign of fever or respiratory symptoms that luck wore off. I could eventually feel it in my heart, my bones, the pit of my stomach, and my soul that my cancer was back. I had my doctor move up my scan pretty quickly and the news was confirmed.  The doctor told me there are two small areas of concern for reoccurrence both in the same general resection area about 1/2 centimeter apart. At the time of the call, my oncologist had briefly spoken to my neurosurgeon who felt one if not both were resectable. In terms of my cancer, surgery will always be the most effective treatment. There was not a lot of confidence in my oncologist’s tone and the call left me shaken and scared. I immediately scheduled a virtual meeting with my neurosurgeon for the following Tuesday and planned to touch base with my oncologist on Monday following his weekly John’s Hopkins Tumor Board meeting for some more insight.

I am still working on forgiving my oncologist for the call he gave me that following Monday. It is not the news itself but the delivery that was off. He called to tell me that in addition to the two potential new tumors, the Johns Hopkins Tumor Board believes I have a complication called leptomeningeal disease (LMD). This basically means my cancer has found a new way to spread to new cells that cover my brain. He told me there is no known cure for LMD and that he consulted a neurosurgeon on the John Hopkins Tumor Board (a stranger and not my surgeon) who told him that surgery of the known tumors was no longer an option with LMD. I was devasted. I took this as a death sentence. I went downstairs. I held my family. We tried to process the news but mainly we sat in shock. I have never felt so low and hopeless in my entire life. It was the worst feeling I have ever experienced. BUT like all feelings, it passed.

Hope has a way of presenting itself when you need it most. Doctors are human too. I still love and trust my oncologist but I am remembering my strength has always come from within and no one doctor or scan has all the answers. It took my family moments of Googling to learn two important things. First, there are promising new treatments for LMD and second LMD is extremely rare and hard to diagnosis based on an MRI. In fact, it is not diagnosed without a lumbar puncture and spinal MRI. These would have been helpful pieces of information for my oncologist to share. Even if LMD is the case, taking a very rare cancer and attaching a very rare complication without proper testing is just irresponsible. Then to dismiss treatment options is dehumanizing. But again I know my oncologist really cares for me I think let fear get the best of him.

Luckily, the Tuesday morning virtual meeting with my A-squad Neurosurgeon, Dr. Amini restored my hope and my fight. He told me both tumors were resectable, he would absolutely operate unless I physically could not survive surgery (and by the look of me he was not worried about that). He then immediately put in the orders for the needed spinal tests explaining clearly that LMD was rare and we needed more testing to even determine if that was the case. He was not convinced based on the MRI. He did advise me to look into LMD treatments before surgery, gave me contacts and told me I had time. He assured me LMD or not we were fighting these tumors. He was not providing false hope, he did not tell me everything would be okay, the news was not any less scary but he was confident and giving me a plan for a strong fighting chance. He believes in me and I could feel it. It was just what I needed. It was hope.

Maybe the silver lining of my oncologist’s terrible call that Monday was it threw me into action.  I got both spinal tests completed which came back negative for LMD. The tests are not conclusive so it does not rule out LMD but it does add more doubt to the tumor board’s grim diagnosis. I reached out to LMD experts at MD Anderson in Texas, a new sarcoma expert at Dana Farber in Boston, reconnected with the neurooncology team at  NIH, and my radiation team at UMD. I got my team caught up and ready to fight.

After taking a step back, connecting with more experts (sans the JH tumor board-so done with them) and things began to shift in the light of hope. All of *My*  doctors agreed no treatment was off the table especially surgery but that a new brain scan would be needed before we could determine the best plan of action. There are lists of treatments on the table my oncologist is working on prioritizing which we will know more about soon based on the next scan.

So that’s where I am today. In the unknown between scans grabbing and collecting hope when my heart feels strong and forgiving myself when I break down into fear and suffering.  It has been a roller coaster and so much is unknown.

My oncologist immediately put me on a low dose of steroids following the scan and I have not had headaches or symptoms. My whole family has been working from home which has been a blessing for me. I am also on a new chemo pill that has the potential to cut off blood supply to the tumors and if nothing else it helps psychologically while I wait.

My sisters and I run three miles a day, I do yoga twice a day, write in a gratitude journal every morning and thank God for each day. I can feel him with me. I feel healthy. I believe the health I feel is a sign from God that  I am ready and strong enough to fight this again. I am hopeful, I am ready to fight, and I am gladly taking in and soaking up all prayers and good vibes. Please pray for my scan next week and remember I got this. Thank you all in advance I know I have the best love support tribe out there. More to come.

Love,

Amy

Here Comes Winter

I blinked and fall gave way to winter. I have so much and so little to share. I finally finished my 6th and final round of chemotherapy at the end of September. This impossible summer took so long and yet flew by. I am amazed by the resilience of my body and my mind. I do not remember much about my final round of chemotherapy. It looked very similar to the few rounds before. I do remember fainting shortly after it finished, I remember the drained exhausted feeling of having very few red blood cells and the bruises that came with too few platelets but for the most part, I remember being grateful that I was back in Richmond finally moving forward with my life.

 (Late September)

I barely had time to process finishing treatment before I had to contemplate starting it all over again. Without so much as a week between the poison leaving my body, my scans showed some suspicious lighting on the perimeter of my tumor bed. The peace I was anticipating would have to wait. Instinctively my head began pulsating and the tears began to fall. I didn’t even have any hair that could stand up before the fear set in. We looked at the scans with my doctor and he did his best to reassure me that he did not think my cancer was back. My doctor doesn’t guess lightly so his opinion held a lot of weight. My dad and I went home that night worried but with hope. The tumor board at Hopkins agreed with my doctor. They thought my scan warranted closer follow up but their suspicion of a reoccurrence was low. A month and a second scan later and I was in the same predicament. There is some suspicious lighting in the scan but it remained largely unchanged. My doctor told me that given the biology of my tumor if it were back, it would have grown. After all, my tumor doubled in size last January after only four weeks.

It occurred to me on my way home from my second scan that this is the battle I will be faced with. Maybe for the next decade if I am lucky. The ambivalence, the constant fear, the finding hope, the carrying on, the living in between the scans. Finding ways to make space and live my life through the uncertainty of the future.

(My friends and family at Race for the Cure Sarcoma)

That’s what life looks like lately. I love being back in my job. I feel grateful to be allowed into the vulnerable spaces of my client’s lives and find joy in spending my days with supportive and loving coworkers. I love having a purpose and a routine. I’m enjoying seeing my Richmond crew on some weekends and being home with my family on other weekends. The pace of life feels fast right now but I’m trying to take it all in and savor it.

(My birthday present trip to Charlottesville, VA)

My hair is growing back, my fitness is returning, and most days I feel calm and grateful. I’m soaking up the holiday season and I am grateful I don’t have another scan until early January. I’m trying to remember that I can spend my time worrying or fearing the unknown or I can use the uncertainty to be more present and more grateful for each day.

(Early December)

Somewhere Between Summer and Fall

Today I was sitting outside on my parent’s deck writing in my journal trying to calm my frustrated emotions.  I was supposed to start my 6th and final round of chemo this past weekend but I was told I’d have to wait until today because my platelets were too low. Then last night my doctor informed me that my platelets are still too low and I need more bloodwork before I can move forward. He’s said it’s not safe to start treatment at this point. I am finding it hard to wait in this space. Stuck between here and there. I’ve been on edge and emotional lately and I cannot quite put my finger on the trigger.  I keep telling myself I should be happy I am so close to being done. I have waited all summer to get to this point but relief still seems out of reach like a carrot dangling from a string too far from my grip.

As I sat outside in the heat watching the green leaves blowing in the wind, I realized how desperate I am for fall.  I want so badly to put this summer behind me. As scary as it is to move away from the protection of treatment, I want to start walking away and into my life that is waiting. I’ve been sitting in this frustration all week anxious to move on and my body keeps telling me I am not strong enough yet. It’s not time yet. Summer is a season of harvesting. I’ve been in treatment since February, everything has been building until now and I am waiting for the fruit of all this labor. Fall is when I get to start again.

As I sat there on the deck I realized some leaves were beginning to fall off of the trees while others were hanging on tightly to their branches in the persistent wind. The stores are full of pumpkin lattes but it’s still too hot to really enjoy them. Part of me is still engrossed in the process of treatment and part of me has begun to grieve and shed everything I have been through this summer. So here’s to finding peace and patience in the space in-between.

3, 4, and 30

It has been some time since I’ve updated everyone on here. Let me catch you up. In the time I have been quiet, I completed rounds 3 and 4 of my chemo with 3 being slightly more manageable than 2 and 4 being even more manageable than 3. This was a pleasant surprise as I was not expecting things to get easier as my body gets weaker.  I think the hospital team and I are both learning what works for me in terms of managing my nausea and maybe I am just getting used to the fatigue. After rounds 2 and 3 I got some pretty painful headaches so my doctor took me off Zofran, one of my nausea medications, and to my disbelief, the headaches subsided making recovery much smoother during round 4.

Round 3 was my halfway mark which meant  I also had a brain MRI and chest CT to check everything out. The good news was my MRI was completely clear. The anxiety-provoking news was that my chest scan displayed some tiny spots showing up in my lungs. This really freaked me out but not my doctor. My doctor said the spots were so tiny they were most likely nothing, in fact, I pressed him and he said he would guess it was 95% nothing. So while the 5% chance my cancer has metastasized to my lungs evades my mind in it’s most vulnerable moments, I am trusting my doctor’s instincts that it is nothing. My next scans will be at the end of September and I’ll know more then.

In addition to my new anxiety, round 4 brought some new challenges with it. Upon admission, I learned my red blood cells and my platelets were low and I would need two transfusions. This initially scared me. However, later when I felt the effects of a boost in hemoglobin carrying oxygen throughout my body and I was no longer feeling light-headed and dizzy, I was grateful for the donated blood. Additionally, since my blood counts (white and red) were both starting to dip and both were taking longer to recover my doctor decided to reduce my chemotherapy by 25 percent. This meant one less dose of ifosfamide, a shorter time in the hospital, and a quicker recovery. My doctor also assured me since we were not cutting out any of the Doxcirubcin (the most effective chemo in my cocktail) this reduction shouldn’t impact the effectiveness of my chemotherapy much.

Finally, the conclusion of round 4 meant it was time to start celebrating my birthday and entrance into my thirties! My family took our annual trip to the Outerbanks and I spent the week forgetting I had cancer and just enjoying my family, the ocean, and maybe one too many drinks. I’m grateful I felt healthy the whole time I was at the beach and I got to ring in a new and hopefully healthier decade with some of my favorite people. I am ready to be 30 and to continue walking in my journey feeling blessed to be alive to matter what each day brings. Thank you to everyone who reached out to me through cards, texts, and phone calls to wish me a happy birthday. I felt and continue to feel so loved by all of you and that love gives me so much strength.

Chemo Round 2

I wish I could say it got easier the second time around but I’m not so sure that is true. With all the baseline testing complete, this round got off to a quicker start. By quicker, I mean that I checked into the hospital around 4:00 in the afternoon on a Monday and the chemo finally got started by 12:00 in the morning. By Wednesday afternoon, the fatigue hit and I was comparable to an overtired toddler in the grocery store except instead of chocolate I was begging for steroids.

Steroids are a part of my -pre-chemo regimen that is “programmed” to start three hours before the chemo to help with nausea and other side effects of the chemo. Steroids also provide a boost of energy and stimulate the appetite. Last time around they were timed perfectly around 4:00 P.M. and were super helpful at getting me through some of the fatigue and helping me eat.  This time not so much. Since the chemo did not start until 12:00 in the morning that meant instead of getting a boost before a mealtime I was getting one before bed. Desperate to be able to eat one last meal, for a bit of energy to spend time with my sister visiting, and to eventually sleep I threw a tantrum. I asked all of my nurses, the resident doctor on the floor, and sent emails to my own doctor requesting to move my steroids up a bit before dinner. They all told me no (with no real time for an explanation). This is when the toddler part comes in. Overtired and frustrated I couldn’t get my way, I  cried for hours.  Katie was doing her best to calm me down but once I started I just couldn’t stop. I had no energy to calm myself down, to think rationally, or to be consoled. I was upset about nothing and everything at the same time. Eventually, they gave me some strong meds and I was able to sleep. On Thursday nausea and fatigue hit full force, I could no longer eat, and I needed a bucket by my side at all times. My mom stayed with me from Thursday until I left and I got by on ginger ale and saltines.

I was home by Friday afternoon and slept most of the weekend. On Sunday night I could finally eat a normal meal. The week that followed turned out to be more challenging than the round before.  I was expecting to have my body start coming back together but instead, I felt like it kept falling apart. Throughout the week I fluctuated from feeling good to feeling feverish, having chills, sweats, headaches, dizziness, and even some bleeding that led to having to get a urine test.  Everything was fine, these symptoms alone were not terrible to endure, but the worry and anxiety that came with them just made the week exhausting. Luckily there was as there always is, a light at the end of the tunnel. This past Saturday I finally felt good enough to head to Richmond for the first time in three months. My blood counts were too low to do much over the weekend but it has been so relaxing and restorative to just be back in my own place. I have been watching shows, enjoying Jeff’s cooking, and eating probably too much ice cream. I’ve been enjoying the 4th of July Holiday, seeing my Richmond friends and a few more days of rest before jumping back into the fire.

This chemo is tough, but I knew that going in. There is no way I am going to walk through this fire unburned but I know in the end I will get through it and the scars will heal. In the meantime, I am working on not letting too much of this summer past me by while I’m wishing for it to end.

 

Chemo Round 1

Hello Team! So many of you have reached out to check-in with me over the past week to see how my first inpatient chemo experience went and I am so grateful for all of you. Seriously, you keep me going on my hardest days. I apologize if you caught me in a moment I needed to vent because (there were many of them over the past week and a half) or in a moment I was too tired to respond.

I am just now starting to wrap my brain around what I just went through. The plan was to start treatment on Tuesday morning, Jeff took off work and was going to take me to Baltimore to spend the first day in the hospital with me but of course, plans are silly in this world.  Instead, the hospital called Monday night to say a bed would not be ready for me until late Tuesday night.  I was bummed because Jeff had to get back to Richmond so it wouldn’t make sense for him to come. Instead, on Tuesday, we slept in and made a big breakfast, and were about to head to the gym when the hospital called and said: “never mind we have a bed, how soon can you get here?”.  Frustrated, I said goodbye to Jeff and my Mom and I headed to Johns Hopkins and were at the hospital by 2:00 PM.

When we got there the nursing staff was great and in terms of hospital rooms, the place was decent. It was large, had a table for puzzling (or eating I guess), a view of the city and a private bathroom. All these things help when you are trapped in a room for a week.  The only problem was treatment couldn’t get started. I guess I convinced my doctor I already had an echocardiogram within the year when really we now think I only had an EKG. In my defense, nobody should trust me to know the difference.  So Tuesday night was kind of a wash because we had to wait until Wednesday to get started. On Wednesday morning I did have an echocardiogram which, for those that do not know, is an ultrasound of the heart, (different than when they just stick the little tabs on you to read the electrical rhythm of the heart) Now you know. It took all day for them to read the report from the echocardiogram (it was all good they were just busy), hydrate me, and mix the chemo so I didn’t actually start getting treatment until late Wednesday night.

In the meantime, I had lots of visitors who kept me laughing and entertained, I took many walks around the 4th floor which I was restricted to, and  I was generally in good spirits. However, the chemo did not take long to set in. Friday morning started with an overwhelming sense of fatigue. I realize now I have never really experienced fatigue until this past Friday. I remember just feeling like it was hard work to breathe, everything took extra effort, moving, thinking, reading, breathing, everything. It honestly scared me and affected me mentally. It’s like you know you’re teetering on the line of life and death. But thank goodness for steroids because around 4 pm on Friday they gave me some and I was able to socialize and eat a little before the next side effect kicked in.

(Katie, molly, Keith and I did actually finish a puzzle 🧩)

(Keith came twice to make sure I’m really watching GOT)

Nausea hit Friday night and didn’t end until mid-Monday. I spent Friday night curled around a bucket trying various nausea meds with little relief. While my stomach did not stop churning until mid-Monday, some of the medications were effective at putting me to sleep which was helpful. I slept most of Saturday and Sunday. The good news is I was anticipating lots of scary side effects that never happened. If someone would have told me the worst of it would be fatigue and nausea I would have thought “no big deal”. But it was a big deal, staying in a hospital room for 5-6 days alone is a challenge, I was sick of the 4th floor and desperate for fresh air. By the end, I was so sick of fluids running through my body, the smell of saline coming out of nose would make me dry heave uncontrollably.

(Katie came with eye masks for a little spa moment)

But then Saturday rolled into Sunday and I was home in my own bed. I could shower and I didn’t have to smell my own medication-reeking urine collecting in the bin over the toilet (seriously awful).

It is Wednesday now and really the first full day I’ve been able to eat normally. I feel like myself again. My hair is starting to fall out already probably because I did the oral chemo first so I’m going this Friday to get it cut off. I’m sure it will be emotional when it happens but right now I just don’t want to worry about it anymore. It’s one more thing that needs to start so it can end.

It’s hard to look ahead and imagine having to repeat this experience 5 more times this summer so I won’t. I will get through this summer one day at a time. While it was awful, the important part was I got back to myself in the end and I will continue to do that. Everything I went through this past week was temporary and it’s amazing how my body eventually bounces back. For now, I am looking forward to a full week of eating, sleeping, and hanging with family and friends.

Thanking you all for sticking by my side ❤

Moving Forward with Chemo

Hello, I’m back. I know it has been over a month since I have written. I’ve been busy living my life as normal as possible and it has been wonderful. I spent the month of April as planned, living in Richmond, working, and being with my friends and Jeff. I feel blessed to be able to transition back into my “normal” with such ease. During the first week I was back to work, my supervisor asked me, “How are you feeling being back at work?” I don’t remember my response but I remember hers. She said, “because I feel like you never left”.That stayed with me. I feel so grateful that I have a job, friends, and a boyfriend that make coming back feel so natural and easy.  I went on dates with Jeff, had girls nights with my Richmond friends, and even managed to run a 10k.

It wasn’t all natural and easy though. Towards the end of April, I began getting headaches, fatigue, and nausea. The anxiety of cancer kept trying to creep into my days. My anxiety has an imagination of its own when given anything to work with.

April came to an end with a mix of sadness and anticipation. Leaving my “normal” was the last thing I wanted to do but I know I need to get this whole chemo thing over with to have a better chance of having years and years of normal ahead.

This past Thursday I met with my oncologist at Hopkins for my follow up scans (an MRI and a chest CT) as well as, to plan the start of my chemo. All my scans were clear which was a huge relief and helped to quite my anxiety. I had gone into that meeting thinking I can handle anything as long as the doctor tells me my scans are clear and they were so I did.

We discussed the upcoming chemo and it seemed less intimidating with the extra time to process. The first thing that needs to happen is my port placement. For those that do not know, a port attaches to a central venous catheter,  basically a tube that connects to a vein near the heart so that medications can be delivered in a safer more effective manner.  Supposedly there is less wear and tear on the rest of your veins. 

One of the first thoughts I had when learning about chemo was realizing I wouldn’t be able to have my family beach week/30th birthday celebration my family has been planning. I thought the port meant I couldn’t swim and showering would be a pain in the ass all summer but it turns out that is not the case. My doctor assured me we can and should plan my chemo around my beach trip because I will need things to look forward too and generally the less I put my life on hold for cancer the better.  I also learned swimming and going in the water is not a problem with a port. I know these are little details but they build and add to an accumulation of this feeling that I’m sick and different now. So I will take and cherish all of the little wins I can. 

The timeline ahead includes a second opinion consult with NIH, which I am hoping just confirms and adds confidence to my current plan, a follow up with my radiation oncologist, port placement, and then finally starting chemo. It is looking like chemo won’t actually start until the end of the month. My sister Katie is going to put together a hospital schedule with the dates of my inpatient days to help plan and space out visitors.  I have a current list going but feel free to reach out or comment below if you would like to get the schedule! I am so grateful for all the love and support from all of you and I will take all the love, support, and positive thoughts this summer.