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
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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.

Post Surgery Thoughts

Monday, February 11th started with Jeff’s alarm clock going off at 4:00 am and then again at 4:30 am. An early start to a very long day. Walking into brain surgery this year was a different experience than being wheeled into it last year.  Do not get me wrong, the less time spent in the hospital is always better so I was happy to be walking in on two feet. There is a certain sense of fatigue that accrues from all of the poking and prodding even if you are lucky enough to have a wonderful nurse named Jane with a warm demeanor and a great sense of humor. At the same time, there is a strange level of security in having multiple medical professionals dotting over you with IV’s poking out of every available vein with who knows what flowing through your bloodstream calming you down.

Either way, walking in this year was a different experience. It felt overwhelmingly vulnerable to be completely alert in an operating room entrusting your life to others because it is your best chance for surviving this dreadful disease. It is very hard to wrap your mind around feeling completely healthy but knowing on a cellar level you are hosting a small number of multiplying cells with the power to destroy you if left uncontrolled. All cancer treatment seems traumatic when you are feeling healthy and I am gaining an understanding for those that at different times in their life turn it down because it is just too much.  The only comfort in experiences like these are the people that help along the way.  Competency is important but I am coming to believe empathy and the ability to humanize in these situations is the most important skill set. The comfort comes in the familiarity of your doctors and nurses. A friendly face, a confident smile, a simple “remember me”, it seems very simple but it should not be overrated. I was so comforted by my neurosurgeon’s familiar team, their kind smiles, and their reassurances along the way.   They were all able to be kind, calm, confident, and empathic in a high-stress environment.

Cancer and all the treatments needed to keep you alive because of it sucks. Please do not mistake the candor of my emotions for a lack of optimism and a grave appreciation for the love and support felt along this journey. Cancer has been one of the hardest and worst experiences of my life but it has also opened up my mind and heart to some of the deepest forms of love and appreciation for others that  I have ever felt. I believe all things in this life have balance and when you are exposed to some of the deepest forms of pain and suffering you are inevitably exposed to some of the greatest forms of love which is what makes surviving all of this possible.

The vulnerability of cancer blends the personal and professional and all you are left with are your raw emotions and a humble sense of gratitude. I am grateful for this breaking of walls and boundaries and this deeper understanding of love and devotion.  It is my silver lining. My state of mind and my emotions are all over the place right now but what  I can say for sure is after this week I am left with both some lingering incisional pain and an immense amount of gratitude for those that were and continue to be a part of my journey through this disease.  Thank you and  I love you all.

 

Brain Surgery Take 2

On Monday I will have my second brain surgery in less than a year. According to my neurosurgeon and multiple others connected to my doctors at Hopkins and University of Maryland this should be a relatively safe surgery (as far as brain surgeries go). The tumor is still small and located in my right parietal lobe a good distance away from where they estimate my motor area is.  I trust my neurosurgeon and I am comforted by the familiarity of having done this before.

However….

The idea that you can be ready for this type of thing is just ludicrous. Memories of last year have been playing over and over in my mind. Sometimes I think if I can just remember all of the hard parts I can be prepared for them this time around.

That is not true and I’m not sure these type of thoughts are helpful. What I do know is this will be a new and unpredictable experience. I will feel things physically and mentally that I have never felt before and it will be hard.  Very hard. I will be uncomfortable, frustrated,  in pain, fearful, and anxious. There will be times that I will cry, I will be restless, and I will complain a lot (sorry in advance).

Despite all of this, I  know that I will get through this.  I will feel love stronger than my pain, my faith will be deeper than my fear, my family and I will find reasons to laugh through our tears, and in the moments I need it the most I will find my center. I always do. I trust myself.

Thank you to everyone who is out there praying, wishing, and sending happy vibes. My family and I are fueled by the love and support from all of you and we will need it to get us through this again. I wish I could say this  will be easier the second time around but I don’t know that for sure. What I do know is I will get through it either way.

Fight Mode

Friday morning began with Molly and I waking up at 5:45 am to fit in a workout class before we both had to get on with our day. After the class, Molly left for her work of filling little minds with letters, numbers, and cite words. I took a long shower, spent time writing in my journal, made sure to tease my dad, and hug my mom goodbye. I ate a healthy breakfast and had time to just think. The snow was falling outside and there was a beautiful white blanket covering our drive from Gaithersburg to Baltimore  (we also got into a tiny fender bender on the drive but it doesn’t really fit with the peaceful picture I’m trying to paint so forget I mentioned it).

I’m telling you all of this because there is no good day to get bad news. There is no way to be completely prepared to hear “yup, your cancer is back” but I was about as prepared as I could be. I think I just knew the moment I walked out of the appointment on January 4th that the cancer was back and I spent the past month getting myself mentally ready for this moment. Tears fell then but they didn’t fall this time around.

My oncologist was waiting in the room for us when we got to Hopkins. I could tell by the look on his face the tumor had grown. In some of my last posts and to family and friends in person I have hinted about how I felt disconnected from my oncologist. After yesterday, I would take every single one of those comments back if I could and just tell myself to be patient. Yesterday, he was really there with me in the moment I needed him. He had thoroughly outlined a plan for me and collaborated with a lot of other experts on the details.  He thoughtfully listened to all my questions and would pick up on the details that were important to me and spend more time there (we spent a lot of time talking about fertility options).

The spot grew from roughly 6 millimeters to 14 millimeters essentially doubling. For reference my doctor explained it grew from the size of a raisin to the size of a grape. There is some edema  (water swelling) in the area so the small headaches I was having could actually have been from tumor which was strangely validating. The bad news is this spot is growing quickly. The good news is it is still significantly smaller than my original tumor which was 4.5 cm (the size of a golf ball). For those that don’t know, I don’t do math well but my doctor said it is roughly 1/3 of the size. For all of you which I told this spec was 1/1000 of the size…I lied. Don’t ever trust me with numbers. The other good news is that it is still in the same place (the surgical cavity) of the last tumor, it is an area of my brain they feel they can operate on and still get good margins with little risk of side effects.  Also, I know I am comfortable in an appointment when I can ask the scary questions. So with some pausing and maybe just a few tears, I squeaked out “what does this tumor coming back mean for survival rates”. My doctor very thoughtfully told me that there is no data to suggest that  local recurrence diminishes my chances of beating and curing this disease.  While I know this type of question is unhelpful because my story is my own and no data really can predict my individual survival rate it was comforting to hear, in terms of what little data exists for my situation, that this is still very beatable.

With that out of the way, we spent a lot of time talking about using  chemotherapy this time around which I won’t get into during this post because for my sanity I need to take one hurdle at time. The next step is surgery. I meet with my neurosurgeon next Tuesday and I’m sure we will set the soonest surgery date possible–I’ll keep you all posted but you can reach out to my parents, siblings or I if Tuesday comes and goes and you haven’t heard.

I know this news is so hard to hear for all of you that love my family and I so much but I want you to know that I feel strong, supported, and hopeful despite this news. I feel loved and I know I am not alone. I want you to know that I am going to fight this with everything I have, and that your love and support means the world to me.

 

One Day at A Time…

It’s a new week but there are no new updates when it comes to what is going on with the cells in my brain. Headaches come and go, mostly when I am tired or overwhelmed, and it is hard to tell if they are a result of anxiety or a side effect of some unconfirmed tumor cells.

It’s Martin Luther King Day and I’m enjoying the time off work and the day to myself reflecting. There is a group of African American women behind me organizing some sort of advocacy event for the community and I reminded pain and its overcoming have so many forms.  The sky is a bright vibrant blue, it is cold but sunny, and I am sitting in a local coffee shop with a peppermint mocha.  My privilege and my misfortune both present and undeniable.

My next scan is in less than two weeks and there is a good chance that my life will change pretty drastically after that. I have been doing my best to enjoy my normal life even if it is tainted by the anxiety of what is to come. I have been paying extra attention to my thoughts lately and some have been more helpful than others.

I have been repeatedly reminding myself I only have one life and one path to follow.  I did not chose cancer but it is now standing in my path and I have no choice but to fight my way through it. I am afraid but I am also ready to fight. I am comforted knowing when I go home I will be with my family. I know there are so many people that go through devastating illness alone and I do not want to take for granted that I have never felt alone. Not in terms of love and support. There are so many of you out there that have been texting me, calling me, and reminding everyday just how loved I am. Your support  keeps me going and it is always welcome. While there is never a good time for cancer I am grateful mine waited for my family to enjoy my sister’s wedding and the holidays before it decided to make a re-entrance.

This past week has had more joy than fear. I’ve been exercising often to feel strong and healthy. I have been reading a lot to focus my mind on learning and growing instead of fear and anxiety. I have been spending time with my friends and with Jeff which makes me happy and keeps me in the moment I need to be in. I feel like I am standing in the door way between two different worlds and although I have been in the world of cancer treatment before I do not know exactly what to expect. My mind has done a good job of romanticizing the love and connection cancer brought and minimizing the pain, fear, and anxiety that was there as well.  This is how I have been able to cope but it also leaves me feeling a little unprepared. Then again maybe the notion of preparation is an unattainable illusion. Maybe I just need to keep walking down this path one breathe, one step, one day at a time. Thank you all for walking this walk with me. ❤