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 ❤

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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)

Treatment Plan & Chemo Mountains

 

Today is March 12th, a year ago I was admitted to the ICU for an emergency brain surgery and subsequently diagnosed with brain cancer. It’s crazy how one day can change your life forever. If someone were to tell me on March 11th what I’d have to go through over the next year I’d be terrified, but strength is something you find day by day, moment by moment. I do not always feel strong but I trust myself to find my strength when I need it.

Breaking down is part of the process of going through. The unknowns that come with first appointments or new information can be hard to digest but cancer has taught me how capable I am of adapting, overcoming, and enduring.

Two weeks ago during my first fertility appointment, I was so overwhelmed and intimidated with the fertility process.  The doctor had a sense of urgency in my treatment that scared me.  I was afraid to give myself shots, I felt inadequate, and I worried I would fail.  That night of the consult I ran the water in the bath and cried my eyes out. I let myself feel sorry for myself for a night, but the next day I went to the clinic and learned how to give myself shots. I watched videos, I read about fertility treatments and I just figured it out. I spoke with people that have been through it and I found courage.  I have 2-3 days left of this treatment and I’m genuinely proud of myself for pushing through despite the fear. I did something new and challenging for a dream I care deeply about and while I wish I never had to do it I’m grateful for the experience. Getting to the top of this mountain allowed me to take in the view of the next one.

Last Thursday, I had my long-awaited meeting with my medical oncologist to discuss the rest of my treatment plan. It was a long day that began with a headache and a two-hour wait for the doctor. I knew it was going to be a hard appointment before he got there, I could feel it in the pit of my stomach. The doctor was empathetic and did a good job checking in with me — I email him updates regularly and he usually responds the same day which I think is pretty amazing. He was already caught up with me, but none the less he patiently listened while I retold him my stories. Eventually, we had to talk about what comes next– which includes two weeks of radiation, 6-8 weeks of a pill form of chemotherapy, and then a transition into an IV chemotherapy cocktail.

The pill form of chemotherapy is called Temodar. It is commonly used for brain cancers and synergizes with radiation for an enhanced effect. This treatment has few side effects and is generally well tolerated.

IV chemotherapy is a combination of two drugs ifosfamide and doxorubicin commonly used for sarcomas and has lots of scary side effects discussed below.

I knew most of the treatment plan before I went to the appointment. What I did not know was the details of this particular IV “chemo cocktail”. I did not know treatment would be three or four months long and could not even start until May. I did not know the risk factors include things like possibly losing all of your bone marrow, developing secondary cancer, heart damage, life-threatening infections, losing your immune system, and of course hair loss. I did not grasp that the treatment would mean spending 5 days admitted inpatient at Hopkins with two-week breaks to recover and then repeat 3-4 times.

My mind immediately went to all the things I would miss out on this summer and the fact that I wouldn’t be able to go back to living my normal life until August or September and my eyes began to swell with tears. Digesting the information and rearranging my expectations is always hard. Deep down I know treatment is something I get to do because my prognosis is still good and I thank God for that every night. It sucks having to go through all this but I’m grateful I have the option to. Jesus replied, “You do not realize now what I am doing, but later you will understand.” - John 13:7 - Inspirational Bible quote/verse to encourage you through the storms of life. #Trust in God and he will lead you through the day. Antique Candle Works walks in faith as a Christian small business, even in the hard times.

This is the first aspect of treatment that is not an obvious “yes, of course, I should do this” for me. These drugs are essentially poison and I do not have a systemic disease making them absolutely necessary for survival at this point in time. My disease is so rare it lacks any good research or an evidenced-based protocol to help with decision making– most of my treatment is based on combing aspects sarcoma research and brain cancer research.   Surgery and radiation are local treatments, while they carry dangerous risk factors they were unanimously agreed upon by all of my doctors.  They left the rest of my body relatively unharmed while providing a larger benefit for eradicating my cancer.

Chemotherapy is like my third-string quarterback and I’m not so sure it’s time to bring him out or that he’ll do much even if I put him in–in fact, there is a real fear he might just make a mess of things. But my doctor and the neuro-oncology team at Hopkins do think it’s time to play him and I am inclined to trust them. My doctor explained that the recurrence of my cancer within a year makes another recurrence more likely and suggests the need for better local control. He explained that while there is no good place for a sarcoma the brain is an especially bad place for one.  He said that the best time to treat cancer is when there is very little of it left. So while I still plan to do some more research and get a few other opinions, I am leaning heavily towards going all in with this fight. It will be a hard summer but I will adjust, adapt, and overcome this mountain too and when I do, I will look back and know how much stronger I am for the climb.

On another note, I feel like this song was written for me right now 🙂

 

Sometimes I can hold it all
I know where I end and where I start
And sometimes it’s all way too heavy
And I’m way more than the sum of all my parts
I know it’s a lot to look at all that I got
It’s a lot to see who I am and am not
But I can laugh and I can love and I can dream
I can win or I can lose, it’s all the same
I still dance, and I’ll sing in the pain
And I can do hard things

Follow Ups and Fertility

It is hard to categorize a week in cancer treatment when it really is a day by day, even moment by moment type of whirlwind. This past week was full including three appointments with three different doctors.

Tuesday set off the week with a post-op check-in at my neurosurgeon’s office.  As usual his presence was comforting and he helped to normalize my emotions. The headaches from the week before have dissipated with the steroids  and he confirmed the recent MRI from the ER visit last Friday was normal. We spent few minutes chatting about the rest of my treatment and I left with an uplifted spirit. Tuesday I was grateful for a succesful surgery, an optimistic prognosis, and to be putting a close to the first step of treatment.

The ease of Tuesday faded and Wednesday came in with a boom. I was expecting an introduction to fertility treatments. A simple knowledge gaining day. What I got was more like an intense shove into the daunting and overwhelming world of fertility preservation. For example, the thought that I would be giving myself hormone injections never even crossed my mind. Like give myself shots? Who thinks this is a good idea? The doctor and his entire team of nurses were impressively kind and empathetic. I could tell they were well versed in the world of emotions with everything from their demeanor to their email signatures. I do not blame them for the rough entry into this treatment. I recognize we are trying to balance a biological time clock and a sensitive cancer treatment timeline so my comfort had to take the back burner.  The hour long consult turned into blood work, an ultrasound, follicle counts, a financial consultation, and a class on medications and injections.  Oh and the injections — they wanted me to start the next day.  Sensing my anxiety, the nurse took a step back and allowed me to start the shots Friday in the clinic with her. *heavy sigh*

After watching egg freezing homework videos and responding to at least 5 emails from the fertility clinic Wednesday night, it was time for bed because Thursday was coming ready or not. Leaving fertility preservation behind for the day, I stepped into the process of mapping  radiation at the University of Maryland Proton Center. My radiation oncologist decided on a total of 10 radiation treatments (two weeks) to be given siamotainously with a chemotherapy pill called Temodar. This appointment was pretty straight forward, the team made me a new radiation mask  and did a quick cat scan of my head. My dad and I were home before 3:00 PM.

The day by day emotions of the week brought stress, lots of tears, and plenty of frustration, but as I sit here at the brink of a new week I am grateful for the progress of the last. I am two days into the fertility shots and confidant in my ability to get through it. I am glad to have a quick plan for radiation and it I am happy it is starting sooner rather than later. I have friends and family members that have stepped up to share their stories of infertility or trying times with me which has made me feel more connected and less alone. Understanding their strength helps to build my own. My silver lining in cancer will always be connection even when or maybe because it can be a very lonely disease.

Jeff came up for the weekend and we went out on our first date since surgery with two of our best friends Adrienne and Derm. Spending time with them always helps to ease my mood and remind me this is all temporary.

Recovery Roller Coaster

It has been 12 days since my surgery and it is safe to say there have been plenty of highs and lows during this short timeframe. The highs  start with all the love and support my family and I have been feeling over the past week and a half. I am grateful for every text message, warm thought, letter, prayer, small gift and phone call. Even if i’m too tired or it takes me a while to answer, I want you to all know they mean a lot to me and keep me going on the harder days. Family, friends, and neighbors have been keeping us well fed and each room in my house is decorated with beautiful fresh flowers to look at.

The surgery went well from the perspective of my neurosurgeon.  He  was able to get 100% resection meaning he got the entire tumor out and was also able to get good margins of healthy tissue around the tumor to help ensure it doesn’t come back again. Additionally, he followed  and removed all the major blood vessels connected to the tumor to cut off the blood supply to any residual cancer cells.  The surgery was more painful than I remember last year but it was a different year with different circumstances and I am not sure I really trust my memory.

My doctor still gave me the okay to leave the hospital the following day, wanting to subject me to as little hospital time as possible. It is hard to heal when beeping interrupts sleeping and your poked, prodded, and flooded with medications. Still, I was a little reluctant to leave because of the pain and the idea of taking narcotic pain medications at home. Managing pain is a tricky art that at times makes me uncomfortable.  I changed my mind when they told me I’d have to leave my beloved nurse in the ICU and start over with someone new. Change is hard and in the end leaving was the right decision.

Trying to answer the question of how I’ve been feeling changes with the minute. I have been every mixture of nauseous, indigested, overtired, overemotional, irritable, fine, content, happy, and at peace.

Then came some strange headaches.

When I left the hospital I had lingering incisional pain which I expected.  The incisional pain started to fade after a few days which I also expected. By this past Monday, I was feeling better. So much so, that I was planning to go to Richmond this weekend and hang out at my apartment with Jeff.  I even had a fancy pick-me-up date planned and reservations made. I was looking forward to getting dressed up and feeling like myself again. However, Wednesday morning started with a headache requiring pain meds and I spent most of the day in bed. The headache was a throbbing pain that radiated over most of my head making it hard to think, relax, read, or really do much of anything. Thursday started a similar way but I had a special day of painting and dinner with family so I pushed through it. However, by the end of the night of painting my head was throbbing all over making it hard to even function. When I woke up on Friday, the pain had barely let up despite the pain pills. I canceled my trip to Richmond and called my doctor. He was busy most of the day in his clinic but mid-day he had his staff call me and tell me to head to the ER for a cat scan.

My parents and I spent from 12:00 PM- 10:00PM in the ER. The cat scan led to an MRI. There was a lot of sitting around with throbbing head pain, but the ER doctor was kind , the MRI guy knows me well and did his best to comfort me —sensing I was having an emotional night, and while my doctor could not be there he sent his colleague, who spent a lot of time talking me through the results of the scans.

The good news is both the scans look the way they should given the circumstances. There was no acute bleeding or infection despite my whispering anxious thoughts. The surgical cavity was just filling up with a lot of fluid pretty quickly over the week likely causing the headaches. They pumped me with more medications and started me back on steroids. Steroids help to reduce swelling and fluid collection.  I had a small dose of steroids that I stopped earlier in the week.  It is possible stopping the steroids led to the headaches but who really knows. Overall, everything is okay.  My headaches are gone for now, and I am working hard to flush the excess mix of medications out of my body so it can start to feel more like itself.

The day left me exhausted and emotionally irritable but eventually the headaches stopped and I was relieved knowing that everything is as it should be in my brain. This recovery is an emotional and physical roller coaster and I am doing my best to be patient with the process. On most days I feel grateful and blessed for the resilience of my body.  On good days, I  recognize the symptoms I am coping with are small in the bigger picture of recovery but other days it all just a lot. It is hard to spend the night in an MRI machine when you’re hoping to be curled up on the couch next to your boyfriend in the apartment you’ve been away from for far too long already.

My parents are doing their best and then some to help make me as happy and comfortable as possible, but they also get the brunt of my irritability which is hard on all of us. I am still learning to cope with the fact that there are days where I am just going to be an irritable bundle of mess. I’m sorry in advance if you catch me on one of these days but I know they will not last.