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.

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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. implanted-infusion-port

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.

 

The NIH Club

Not too much in the way of treatment has happened since the last time I’ve written. Most of the time I’ve been pretty bored. I work out everyday, spend a lot of time on the phone with my insurance company, and I try to read as much as I can. Embarrassingly, I discovered an Oregon Trail game on my phone and nostalgia has me playing it like I’m in the 5th grade computer lab all over again but that’s between you all and me. No one else needs to know..

(Brookeville Beer Farm with family and friends that are like family)

I have been catching up on some important time with friends and family which is a different kind of treatment.

(Ava, Chloe and I)

(My cousin Heather, and my god daughter Ava, and Chloe).

Part of the hold up with starting treatment was the desire for a second opinion and confirmation that this upcoming IV chemotherapy is a good move. It’s a pretty big deal so I wanted more reassurance I was doing the right thing. With some research, I discovered NIH had a few brain Sarcoma related studies going on…what are the odds? Right? Turns out it is all thanks to Obama and Biden (I miss them). In 2016 Obama signed a 21st Century Cure Act which put 6.3 billion dollars into cancer research. This was Biden’s project in honor of his son Beau who died from brain cancer. The bill specifically put money aside for brain cancer research.

So like anyone else trying to get an appointment at NIH I feel like I moved heaven and earth to get this appointment which took way more time and a lot more stress than I anticipated but it was worth it.

Despite the multiple confused phone calls I got from various coordinators on getting my scans, notes, and pathology, when I got to NIH the doctors I met had my story down to a T. We discussed my story, their research, and my options. They gave me good news in that they are completely on board with my current treatment plan to get IV chemotherapy and would not recommend anything else at this point. Further, they think it’s very rare to find a Sarcoma expert like my medical oncologist and they trust him completely to pick the right regiment for me. I knew my doctor was good but to hear it from NIH and to hear them defer to his expertise was very reassuring for me especially because I met with the head of neuro oncology at NIH.

Additionally, they explained that because of the brain cancer research funding from the Cures Act, they are conducting a Natural History Study of 12 rare brain cancers. Brain Sarcomas just so happen to be one of them. So while I will not be getting treatment at NIH at this point (and hopefully never)…I’ll be followed by them and can always opt to get treatment there now that I am a part of study. All good news.

After the appointment on Thursday, Jeff and I left for a quick trip to Ohio to celebrate Jeff’s birthday, visit with his family, watch his brother graduate, and watch the O’s get smothered by the Indians …it was great to have some time to feel healthy and relaxed before everything starts and I’m so glad I wasn’t in the hospital for Jeff’s birthday so we could celebrate him.

And now (Monday) it’s back to reality.

Tomorrow I will get my port placed and in a week treatment can start. We have not sent out a schedule yet but Katie will as soon as we know the dates so stay tuned.

Still Doing Well

Hello, my army of supporters! I’m sorry it has been a few weeks since I have written. I make no excuses but to say that I am not forcing myself to do anything except the medically necessary so writing will happen when it feels right.  As always, feel free to reach out if you’re wondering how I am doing.

Picking up where I left off, fertility treatment finished with a successful egg harvest. These words are strange to write. The whole idea of fertility treatment is strange, uncomfortable, and never something I wanted to experience. But my will to increase the possibility of having my own children one day was much stronger than two weeks of discomfort. I  have to admit the fertility doctor, my nurse, and the staff at Shady Grove Fertility were some of the most responsive, empathic and thorough medical professionals that I have worked with thus far in my cancer journey. I am grateful for them, I am grateful for the science, but most of all I am grateful I am done with the process and I have plenty potential little kiddos freezing patiently (strange I know).

With fertility preservation complete, radiation and the pill form of chemo (Temodar) were able to start on time. Both have been going smoothly. The Temodar has brought no noticeable side effects other than my doctor making me refrain from the glass of wine I have been patiently waiting for most of 2019. Oh well, somehow I will survive.

(Note: my new radiation mask paint job is in the works)

The predictability that comes with having done this radiation before makes things a little easier this time around. Radiation is also much more bearable in two-week increments than six… go figure.  It may also be more bearable after learning about the IV chemo to come. I am not looking forward to this summer of inpatient hospital stays, baldness, and everything else that chemotherapy brings but I am looking forward to April.

(Post radiation waffle forehead)

No matter what, I need to give time for my brain to heal after blasting it with radiation so for a month I get to put this whole world of cancer treatment on pause and pretend my life is back to normal again. I am going back to Richmond and back to work, taking a much-needed break from doctors and my parent’s home (I love them but any grown child that has left the nest and come back knows exactly how I am feeling–being 29 and the center of my parent’s attention right now is hard and unnatural for any middle child).

BUT overall, I am doing well. I mean it. I am not just giving you the answer you want to hear but accurately summarizing my life. With all things considered, I know I am still doing well. Physically I feel strong and healthy…just a little fatigued. Emotionally, I have my days. Days when I break my cardinal rule of not Googling/researching my diagnosis and getting lost in fear, days where I question my faith and get angry at the world, days I am irritable and hard to be around (just ask my parents), and days where I want to curl up in a ball and hide under my covers until this whole cancer thing is over.

There are also days when I recognize how special it is that my 97-year-old grandma still gets to call me and care for me every day. There are days where I am grateful for how my cancer diagnosis has connected me with friends that life has wedged time and space between. More days than not, I remember to thank God for each treatment I have made it through, for the amazing superhuman doctors I get to work with, and for the resrouces that make survival possible. On my hardest days, when I look hard enough I can always find the good and that’s enough for me right now.

(My high school best friend visiting and meeting her little ones for the first time)

(My mom and I before my egg harvest procedure)