Processing the emotional trauma of chemotherapy

Shameless selfie :)

Oh man! How is it August already? I realize I have taken a large hiatus from this corner of the internet that I call mine. That is partly because I have been trying to back on my feet and partly because I havent had a ton to write about. Things for the most part have been going well. I have my 4 month post-chemo appointment in two weeks and to be honest, I am a little nervous. Before all of this happened, I never really thought about the minor aches and pains. I have had digestive issues before, but never once did my mind jump to cancer. Now, I am afraid that each time I have some aliment that lingers longer than the average, I will think my cancer is back. 

A few weeks ago I had some abnormal abdominal pain that was nagging and wouldnt let up. I called my oncologist and he told me to come in. After several physical exams, they decided I should get scanned to rule out anything "scary". I also got my blood drawn since I was there. Long story short, everything came back negative. Blood levels are completely normal and my CTs were clean. Praise God to be healed!

But the flood of feelings sitting and waiting for scans was quite emotional.

While waiting to get my blood drawn, I sat in the chair just hoping my numbers were still low. I was just starting to feel like some small portion of my life was getting back to normal. And to be reminded, yet again, I am not in control of my health was (and is) frustrating. The smell of the saline as it penetrated my veins was suffocating. It literally made me sick to my stomach with the thought that I might not be done with this nightmare. After I gave blood, I had to go downstairs to get scanned. I was required to ingest contrast before the scans and as I waited (65 minutes), my mind raced. It was flooded with memories of sitting in the waiting room and feeling nauseated, fatigued, weak, tired and helpless. Remembering sitting for hours on end with a needle that pierced my skin, slowly dumping chemicals into my heart. Watching people come and go to visit me or other patients. The memories are crisp and fresh like they happened yesterday.

I have some work to do to process through the trauma of being a cancer survivor. Interestingly enough, a lot of my treatment, I do not remember. I truly believe it is the body's way of protecting itself. Survival mode only. Remember only what is necessary and let others take care of the rest. I am working with a counselor to process through a lot of this and its been really helpful. I grossly underestimated the impact the first four months of this year were on me. Now is the time to unpack those layers and be a whole person again. Something I am truly looking forward to again :)

Picture from when Kristen was in town a few weeks ago

Patient experience: getting through chemo

The other day I was contacted by someone who has recently been diagnosed with the same form of ovarian cancer as myself. She found my blog and had been reading along my journey as she prepped for her own. She asked me what were three key things for me personally during chemo that helped.  Here was my answer:

1. Support
Family, friends, co-workers, neighbors, friends of friends, you name it. At first for me it was really hard to accept help or even to ask for help. This has more to do with my personality than anything else. I told her it takes a village to get through this battle. And it truly does. I could not have gotten through the day to day with out my parents being physically here.  My friends coming over to sit with me as faded in and out of sleep. My coworkers bring by meals and small treats to brighten my darker days. Hundreds of cards and care packages coming via snail mail to offer words of comfort, prayer, support.

2. Accept where you are at any given moment. 
Some days were really hard. I couldnt focus on what I needed or wanted to do. I had difficulty articulating how I felt (its okay to just say you feel like shit and move on). I was frustrated that yesterday I walked for 60 minutes no problem and today I could barely go for 10 minutes. The key to getting through those times for me were to stop beating myself up about what I couldnt do and relish in what I could.

3. Stay active throughout chemo. 
During my first couple of rounds of chemo I felt fairly well. I had more energy to go for walks or entertain guests. But in the final two rounds, I really struggled with fatigue and low energy. Some days I would pace at 22 minute miles. Some days I truly wondered if I would make it the 4 blocks back to my house. But even if you walk to the end of the block and back (which I had days where that was all my feet would take me), it is something. Keep track of progress in whatever way is natural to you and keep setting small, obtainable goals.

She also asked me if there was anything I wish I would have done during treatments. My biggest change would be more on top of giving my body better nutrients. Now there were some days where I could only get down about 800-1000 calories, but on the days I was feeling better, I wish I would have juiced more, drank more healthy smoothies. I wish I would have taken more of an interest in what was going into my body.

It is strange to look back at the 12 weeks I was in chemotherapy and recollect specific memories. I remember one time a well-wisher told me "you just have to get through the week". I remember wanting to scream. I was trying to get through that hour, much less the week. I knew they meant well, but there were times when I wished I could just sleep through the week; knock myself out with something so I would not have to feel the pain. There are some weeks where I do not remember anything. I was in such a chemo fog that short term memories did not make it into the long term bank.

I am going to try and make some lists in the next few days that might help people in the future of how to help going through chemo or how to get through chemo. The lists will obviously be specific to my experience, but who knows, might help someone along the way. I know when I was getting ready to start chemo I was all over the internet trying to figure out what to expect. So maybe I can help someone like me :)

My first chemo free week

Today is my first Monday in 12 weeks where I do not have to start chemo. I am so thankful that Round 5 was not needed for my body is exhausted and needs a break. Most side effects are starting to diminish and I am noticing that each day I feel a little bit stronger.  Side effects that are still lingering include: swelling in my fingers, absent taste buds, low energy, interrupted sleep, decreased appetite and though improved, still a decreased capacity for obtaining intellect.

I have confirmed a return to work date of May 20th. I am going to go back at 20 hour weeks for at least the first 2 weeks and then decide if I can resume my full schedule or need more time to integrate. I am excited to return to work because it will offer some structure and purpose to my day, but I am also nervous. I have lost quite a bit of muscle mass and of course need to build up my endurance to be on my feet for up to 5 hours in a row. That being said, I am taking each day as it comes and doing everything I can to be ready to return to work in about a month.

Pre-juicing veggies

This past week I was hit by low energy and decreased appetite. I am still not experiencing the feeling of being "hungry" and have to eat meals more according to the clock otherwise my blood sugar tanks and I really feel sick. On top of that, I have been trying to get good calories in my body. I am trying to juice at least 1 time a day, which has already helped to balance out my blood sugar. Jenn got me a book called The Juicing Generation which has been very helpful in tips easing into juicing. I had a hard time drinking some of the heavy leafy greens and the book guides you in what to consume in what order to "trick" your taste buds and build up to the heavier green juices. This has been really helpful for me!

I am going to try and be more present on my blog in the coming weeks. I have struggled with energy and having content to write. But then I remembered why I started this whole thing a few months ago. Not only is it a convenient place for people to receive updates on how I am doing, but it is also my own journey documented so that I can look back and see how far I have come. Though at times I have willed it to be a race, this journey is really a marathon and I am trying my best to be diligent to the process. Thank you for those who have stuck around to encourage me along the way whether in words, gifts or personal time. I am forever grateful!

Got to hang out with James last week! Love this little man

Good news!

Round 4 has been a beast. Everything sucks a little but more. I am even shocked how little energy I have had this go around. But this is where things start to look up. 

Today I received the news that my AFP had dropped enough that is will in fact be my last round of chemo! I still need to finish out next week's treatment, but this is it. Last time I have to be noxious poked by the port needle, last time I have to sit for hours as I watch toxins drip into my heart. This is it

The plan is to be followed by blood work for the next 4-6 weeks, with a PET scan down the road to make sure it's gone. 

It's a strange mix of feelings. I want to celebrate, but my body is so exhausted. For now, my smile is a little bit bigger :) God is good. Spring is all around, reminding me of new beginnings. Today is a new beginning. 

Thankfulness

For me, the last couple of weeks there has been a lot of focus on what I don't have. I don't have hair, my eyebrows are slowly falling out. I don't have energy to go walking like I did last week. I can't taste anything, my mouth feels raw and thus eating is a chore. I don't have muscles, which leads back to feeling weak and fatigued. I can't sleep through the night, meaning I don't have restful sleep to have energy for the day. And probably most importantly, my lab values were not low enough to definitively say I could be done with chemo and now I am in a holding pattern til more labs can we conducted next week...

In the midst of all this, I feel like I am being called to be thankful. It's a really annoying place to be for me, mostly because I am frustrated, not thankful. I want to be done with chemo, get my energy back, be able to enjoy activities and adventures I love doing. Spend time with my family without feeling so exhausted I can't participate in the conversation. Meet up with friends and not talk about cancer. 

Feeling thankful almost feels forced. What do I have to be thankful for right now? And that's where my "thankful list" is likely longer than I can imagine and certainly longer than the ones above. 

I am thankful for life. Right now I feel like death, but I woke up breathing this morning, so I am alive.

I am thankful for the support of hundreds. Really. I could never have imagined so many people would care about me in the ways you all have. It truly takes a village when something like this happens and I feel like I have the support of a small city. 

I have been so humbled by the funds raised in the last 2 weeks to help with medical expenses. The outpouring of love and generosity was unfathomable. It's always been hard for me to accept the help of others, so I feel like God is working on that part of me big time. 

I am thankful for my family being here during this time. It's not a short drive from MT and I appreciate everything they've done. I can't imagine what it's like to have a sick kid. But I do know what it's like to have very generous and supportive parents. 

I am thankful for a God who is in control. I am learning a lot about trust, peace and understanding, faith in what is to come when all of this is said and done. If it were up to me, no one would go through heartache like this. But as a result, we would miss out on so much growth. This life sucks. But I am learning to see silver linings that I never saw before. 

My thankful list could continue for pages. It's good for me to focus on this, for I can see what focusing on the other list did for me. Today, most importantly, I am thankful for one more day between me and last week. For cancer cells being killed and new cells being regenerated. 

This is the Final Count Down...

Today is hopefully my last round of chemo. Walking in today was difficult. After a fantastic weekend of almost feeling normal, it is so hard to walk back in knowing I am going to feel worse by the end of the day. But also with the knowledge that it's temporary and I have climbed back out of the trenches twice already. I can do this!

A few more updates:

• My labs came back and my platelets returned to normal levels. Will proceed with chemo this week
• The AFP tumor marker was taken today and will take 3-4 days to get results back. This is significant because the results will determine if I need another round of chemo 
• My incision is healing and the fluid continues to drain. Hoping to be done packing it in the next week or so
• Sleeping is still one of my biggest hurdles. Still working to find something to help 
• Big push this week with nutrition. I am slightly anemic so need to keep pushing the leafy greens and protein. I got a juicer last weekend, so this week it will be put to work!

My dad is here with me this week after getting to spend the weekend with my brother, sister-in-law and nephew. I know my moma is missing being here this week. She is missed at the chemo salon for sure! I will update on my weekend adventures soon, so stay tuned!

Super hero week 

Rejected...

Today was supposed to be a chemo day where I got Bleomycin. But my platelet counts were too low for the treatment. So now we await my doctor's decision of whether he will post-pone my treatments for 1 week and resume next week or if he will just skip this treatment all together and start next week as planned. Either way, this week was meant to be a rest week and I am okay with that. :)

This weekend was pretty relaxing which was nice. I had several bouts of "not feeling well" which was frustrating. But trying hard to listen to my body more and rest when it is begging me to rest. We caught a Blazers game on Saturday night which was a lot of fun. Sunday was pretty low-key. Ran some errands with Jenn and then went to my church class. Sunday night, some friends joined us for dinner which was really nice.

Tomorrow one of my best friends from home is coming into town for a few days and I am so excited!! Its been forever since we had just-the-two-of-us time, so I am really looking forward to it!

Just wanted to post a quick update on how things are going lately. I have a few more post planned for later this week, so keep checking back. I am truly grateful for all of your support and kind words. Its a battle for sure, but I am trying hard to be on the winning front.

Good News!

This week has been going well so far. I started the week off really strong. I made it through 3 treatments before feeling side effects. Huge answer to prayer. Today was my first difficult day this week. I started feeling nauseous last night and this morning. They added some anti-nausea drugs to my treatment today which has helped. I slept about 3 hours last night, so today I have just been exhausted.

Even in the midst of all the crap, I am still so thankful to serve a sovereign God who is faithful. Today I received good news and it is enough to sustain me for the rest of the week and well into the next phase of this treatment. The AFP tumor marker came back at a reading that was 2/3 less than starting chemo 3 weeks ago. This tumor marker is the most sensitive to knowing how effective the chemo is and I was shocked how low my number was today. It is still high and there is still obvious concern regarding getting it down well below 500 ng/mL. Right now I am sitting at 2300 ng/mL and was at 6800 ng/mL three weeks ago. Praise God.

In other news, I went out and about yesterday for the first time since shaving my head. Jenn and I went shopping after chemo yesterday and I even took my hat off a few times in REI to try on other hats. This was a huge step for me because I realized I just need to be myself. I am finding a new definition of beauty and though that is extremely difficult, it is necessary for growth and re-entry into society post-cancer.

Tonight's plan is to get rest so that I can face the last two days of chemo this week. I know I can do this and really kick this cancer's ass. Today's good news is just the fuel I needed to keep going.

Long hair gone...

No day but Today

On that first day meeting with my oncologist I asked him what side-effects I would feel as a result of the medication. His first reply, hair loss. My first reaction was... dang, that sucks. I kind of like my hair. And I have never had short hair in my life. Okay this will be a interesting adventure.

The time came on Sunday to shave my hair. They told me it would be about 2-3 weeks after starting chemo that I would start losing my hair. Monday of last week I started losing more than I typically lose in the shower. And then I combed my hair and streams of hair started falling. I have a lot of hair so I thought I could probably make it a few more days until needing to be drastic. I had decided at the very beginning of this journey that as soon as it started falling out, I would be proactive and cut it or shave it.

Towards the end of the week I noticed my hair was falling out rapidly and becoming matted and impossible to get my comb through it. It was time. On Sunday my mom and I went to a barber shop and had a lady shave it off completely. Down to 1/8 of an inch.

That first time I looked at myself in the mirror with stubble here and there, it sank in this is real. I have had several moments throughout this process where it feels like it has been happening to someone else. Especially the days I was feeling better and almost normal. But looking at my own reflection, it was as real as it could be. This is happening to me.

The hardest part about losing my hair is it is truly the first outward impression to the world that I am sick. Until Sunday, I could go anywhere and for the most part, not look any different than your average joe. This is the first big realization that I have cancer and I am sick.

I am doing better emotionally about losing my hair than I thought. So far, my mom is the only one who has seen my bald head. I think it comes back to not wanting people to feel sorry for me when they see me out and about. I just want to feel as normal as possible.

It doenst help that I live in a culture that values beauty above all things. Where makeup and hair style are typically the first thing that people notice when they meet you. Or used to describe you to others. But I guess this is my opportunity to make my own kind of beautiful and start to redefine at least my own cultural expectations. Work to redefine my identity. So cheers to being bald; at least for the near future.

Round 2

Today was day 1 of round 2. It went well for the most part. They have really dialed in on the nausea medication so I am feeling a world of a difference from my first week of chemo. I also (knock on wood) don't have the mealtic taste in my mouth like I really struggled with last treatment. The other good news is I was able to continue eating well today. I left chemo today quite tired and took a 2.5 hour nap.

I had some lovely friends from work come and hang out with me today.  We played Sorry at one point,which was awesome. We laughed so hard I am sure the other patients were annoyed. Oh well.

I will try to update every day this week. I have a few other posts scheduled, so you might actually get two posts in one day :) so keep checking back

Day 5 of chemo

A little fun today

Woohoo! Made it through the first week without any horrible adverse effects. I will have to say my nursing staff and doctor were all over getting me the correct medications to work with the copious amounts of chemo that have been infusing all week. I am overwhelmed how faithful they have been to getting nausea under control.

Today I was fortunate to have two coworker join me for the chemo session. Shayne and Sarah were awesome and really helped me to feel back in the loop. It really makes the sessions more entertaining AND helps me keep on track of emptying my bladder. Side note, because the cisplatin is so harsh on my kidneys, they infuse several liters of a saline mix of eletrolights. AND it is important to get those fluids out. Praise God my blood came back today, noting my kidney function was good and I was okay to receive my dose of cisplatin. :)


After chemo I was pretty tired so took a little 3 hour nap :) I have been walking after chemo sessions all week, so that was unusual that I was so tired. But I am on this new thing where I actually listen to my body. So, cheers to new habits.

My friend Kristen drove down from Seattle and was here by the time I awoke from my nap. We met up with some girls playing cards at a coffee shop near by, which was a perfect night-cap; out of my house and a chance to "feel normal".

Again, I was so blessed by the giving nature of people when I arrived home. My mom's friend Marie made me some chemo hats and of course my favorite, a Seahawks bracelet. Thank you for you generosity in the little things. Not one thing goes unnoticed. I am severely behind in my thank you notes, but know I will get caught up this weekend (after my Hawks win the Super Bowl).

Thank you all for your love and support and prayers this week. I truly believe this week was tolerable because of the thousands of prayers that were lifted this week. I am humbled by your willingness to participate in the journey with me.

The girls 

Day 3 and 4

Forgive me for not writing yesterday, I slept through most of my treatment and then was pretty groggy last night. I have been battling the nausea a little less, which has been such a blessing. I walked another 30 minutes after my session yesterday and today we have more activities planed for after chemo. I was lucky enough to have Jordon come by yesterday and plays a few games of Uno before I passed out for 4 hours straight. Must have needed the rest. :)

Yesterday I was again inundated with nice words and pictures from friends and family near and far. I have been so humbled by people's willingness to be generous in moments like these when I need them the most. I am so thankful for a God who is faithful and never far from me. I truly believe the thousands of requests that have gone up for me to be able to sleep and not be nauseous has changed the game this week. Praise God!

The chemo suite is becoming a bit of a second home. On Monday, I was very aware of the sterile walls all around me. The patients all staring at the "new kid" wondering what I have got. The nurses here have been very intentional to create a comforting environment, and for that I am grateful. The suite allows very little privacy, but soon you realize there is no way anyone can do this alone. Each patient seems to pull strength from the other patients.

Today Jenn brought in a magazine that was full of inspirational stories of athletes who were denied time and time again, but finally made their goals of going to The Olympics. One quote in particular resonated with me, "When the unexpected rips through your life- cancer, divorce, natural disaster- it can change everything. How well you bounce back can come down to whether you view obstacles as healthy challenges or paralyzingly threats"

Each day I have a choice. I can give in and let this cancer win, or I can fight like hell. Today I am making the decision to fight like hell!

Day 2... nausea

Today was okay. I had a rough night last night. The steroid injection I got yesterday has a side effect of of wakefulness at night. So I was awake from 2am to 7am. And when I woke up, I was accompanied by a little known friend, nausea. I tried taking a sip of water, which only made it worse.  I have had a horrible taste in my mouth that is very metallic, which makes eating or really drinking anything rather difficult. The nurse mentioned being very proficient with oral care; so I got a tung scraper today and toothpaste and mouth wash that are higher in something.... Anyways, seemed to help a little.

Today I was so sleep deprived from the antics of the night before, I slept through most of my treatment. I was able to eat some soup at lunch time, so praying that continues to be something I can get down. My friend Shayne had gotten these fried plantains for me from TJ's and I ate them like candy on Monday and today the smell of them made me want to vomit. So, I guess thats how this is going to go.

So far, I have been passing my time reading the book of Acts. A book in the Bible I have never read (or at least not in its entirety). Its been really cool to read about how the church went from just a mere 12 people to thousands and thousands. I have been seeing small miracles happening all around me since this all began. Trying to keep strong in my faith and prayer for peace and understanding. And sleep :)

I thought since today was kinda low, I would make a list of those miracles I have seen so far:

• That my cancer is curable
• That my cancer was found quickly before it had a chance to ravish my body
• That they did not have to take my ovaries during the tumor resection
• That I easily have the most amazing friends and family keeping tabs on me
• My mom for being here during this week
• My coworkers who have stepped up with meals and fun goodies to brighten my spirits
• That I have an environment at home that promotes a healing environment
• That so far, chemo is not as horrible as I built it up to be
• That I have a lovely caring nurse that seeks every opportunity to answer questions and keep my body at ease during this transition

Those are just a few that I have been privy to whiteness since this all began. Here is a picture from today. Tomorrow is going to be Seahawks gear including this really awesome amazing blanket I received from Camille's moma Maria.

Day 1

The day we have all been waiting for... at least for the past week. I arrived at the chemo suite at 930am. My mom flew in from Montana on an early flight to be here with me through this journey. We started with a blood draw and put a needle in my port. The portacath is healing nicely, but it is a little weird having a needle in your chest during the infusions. Got my vitals checked and onto the chemo suite.

The suite is nice. About 30-40 chairs for patients and family members. Today my nurse was Bev. She is very sweet and really helped with the transition and did a great job of explaining everything as it was happening. I started with an injection of a anti-nausea drug and then she hung another anti-nausea drug. Following that, I got a steroid that infused over 20 minutes or so. Then the chemo drugs were infused. Today I got Etoposide and Cisplatin and a whole bunch of fluids. The cispatin is pretty harsh on the kidneys, so they make sure to flush you right out.



     I was there in all 6 hours today. Most days wont be that long. I kept busy by reading a little, watching some videos and taking a substantial nap. There were a few ladies sitting on either side of me, but I did not talk to them. I got overwhelmed one time reading the kind words of a friend. Its truly humbling how much people love me and are truly cheering me on.  I know its okay to cry and be emotional. I am getting to the point where its okay; i am just not a pretty cryer :)

We came home and went on a walk with my mom. We walked about 2 miles to the post office (i had a lot of thank you notes to mail). The walk was very slow most of the time. It really felt good to get my heart pumping and lungs expanding. When I got home I just relaxed and worked on eating some food. The worst side-effects for me right now are a terrible metallic taste in my mouth and a pretty substantial headache. I feel really lucky to not be feeling nauseous right now (knock on wood).

Tomorrow my appointment is a 930am and the infusion should last 4-5 hours. Continuing to just take 1 day at a time. Thank you all so much for the support. Its truly the little things that are getting me through this journey.

Love,
Jyndia

The best week of the near future

This is going to be a week to remember because it might be the best I feel in a while. On Wednesday I attended a group class to prepare patients for chemo. We learned more about the individual drugs we would be taking and how to combat some of the horrible side effects. For me, my drugs are Bleomycin, Etoposide and Cisplatin (BEP). The number 1 side effect of these drugs is hair loss :(  Other side effects: nausea, mouth and throat irritation, metallic taste in mouth, kidney toxicity, hearing loss, decreased fertility, lung fibrosis (rare).

Then yesterday I had my portacath placed. It sits underneath my skin on the right side just below my clavicle. This will be where the chemo is delivered. Its sore today and a little bit swollen, but overall was a pretty effortless procedure.

At this time, I am anxiously awaiting next week. It has been harder to sleep at night because every time I take a deep breath, my diaphragm contacts the tumors on the liver and referral pain to my shoulder is induced. Makes taking short breaths the only option. Also, lying down flat increases the referral pain. My doctor told me once I start chemo, this should subside. I will be looking forward to that most!

This weekend is designed to have a little bit of fun, but also some good relax time. I am looking forward to getting the chemo started because I need this cancer out of me ASAP. I was lucky enough to talk to three of my best friends today which always puts you in good spirits. I also walked 3 miles! Longest walk to date!! 

I know the journey is going to be long, but I am prepared to fight and fight I will do.