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 :)

Friends for life

Last week my friend Becky came to Portland to visit.  It was so good to see her and I am always amazed when a friendship can just pick up where it left off. We think the last time we saw each other was Christmas 2013, but before that was her wedding (summer 2007). I was looking for pictures from her wedding, but they must be on my external hard drive. I am so thankful she came out and I was able to show her some of my favorite parts of Portland.

She arrived last Tuesday which was the last day of Round 4. I was pretty tired, but we ventured over to Hawthorn neighborhood to people watch. I was cracking up with Becky's comments "does everyone where skinny jeans?" and "why does that guy just have one pant leg rolled up? Is that a fashion statement?" and "you eat food from a cart?". I wish I could remember all the things she said because I was literally laughing out loud multiple times.

On Wednesday we went to heaven (Zama Salon)! Becky treated me to the full salon experience including a facial, massage and foot soak. It was a fantastic way to celebrate being done with chemo and a chance to really just relax. The salon we went to was amazing and if you are in the Portland area, I highly recommend going. We went out for Thai food afterwards, which I think was Becky's first time eating Thai food. We spent the rest of the day running around the city seeing sights and just hanging out.

On Thursday we woke up and went to the Waffle Window in SE Portland. It was amazing and enough to send anyone's blood sugar over the edge :) We drove around the west hills and picked out our dream homes :) It was raining all day so we spent a good amount of time hanging out on my couch watching TV and just catching up on life.

I am consistently amazed by all of my friends, near and far that have given so much during this time. Thank you Becky for taking time away from your family and your life to come out and spend time with 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. 

Update on numbers

Thanks for being patient. This round of chemo has been rough. I have had more side effects and felt sick this round in comparison to the other rounds. 

I got my AFP value back yesterday and it came back at 11.69 (previously at 126). Below 8.3 is normal. So close. Off by 3 points. The disappointment I felt took my breath away. My doctor was also disappointed and said he would come up with a game plan since I am so close. 

The plan is to redraw the AFP on Tuesday. If it is below 8, I will be done with chemo entirely. If it's not, they will come up with a game plan. So for now it's a waiting game. 

Will update more later- this chemo brain has a short attention span today. 

Opportunity to give

Several people have expressed interest in helping me financially through this journey. I have given it a lot of thought and decided the best way to do this would be to create a webpage based opportunity for those who would like to give. The link to the page is:

http://www.gofundme.com/7ssj1w

The reason I had to give this a lot of thought is because I have mixed emotions about accepting help. First and foremost as someone employed in healthcare, I believe it each individual's responsibility to have insurance and have some sort of an emergency fund set up for situations like this. I am blessed to have insurance and I was in the process of building up an emergency fund when this all happened. Medical bills are scary. They pile up before you can blink.

That all being said, I also know some people really feel called to give in a monitory way. Of which is more than I could ever ask. This site was not created to guilt people into giving. That is the last thing I would ever want. I am so thankful for those who have given through time spent with me, words of encouragement through email, text, snail mail. People who have flown out to see me and spend time with me has lifted my spirit in ways I did not know possible. I am thankful for all of those things.

As a chemo/doctor update. I saw my doctor on Friday and it was confirmed, round 4 here we go! He will draw my blood on Monday March 31st (Day 1 of round 4) and assess remaining cancer in my body. If the number is 0, this will be my last round. If it is not, well, I am actually not allowing my mind to go there. My last count was at 127 (down from 68,000). It has to be 0, right?

An update on my lack of sleep. My doctor thinks my body is not able to regulate its temperature and the reason I am waking up is because I am overheating or chilled to the bone. He called it "acute ovarian failure" and quickly stated it was a good thing for this stage of treatment. He has prescribed a low dose of estrogen to combat this issue. Here is to hoping!!!

This is the last full week of "rest" before round 4. I am taking each day as it comes, but this week is significantly better than last week. Again, thank you for all your prayers, thoughts and well wishes. I could never have imagined the support I have received. Thank you all!!

Just for fun, my favorite two pictures of me and my nephew just because he is cute and who does like to see an adorable baby!

Summer 2012

This past fall- September 2013

Memories

I have been thinking a lot about memories lately. At the beginning of the year I decided I would start a new instagram account to document 1 picture per day in the year of 2014. It has occurred to me several times that if there is not a written account of what happened or a picture, the likelihood that I will remember what happened decreases. So far, 2014 has been dominated by cancer and cancer-like things (tests, hospital stays, surgery, chemo, etc). But I truly believe the second half of the year will be filled with new memories. Memories of activities that resemble my "old" life. And that I am very much looking forward to...

Recently I have found myself watching my screensaver on my computer for hours (it cycles through my iPhotos). I love looking at places I have visited, friends I have met in several locations across this country, memories from graduate school and college. There are so many times I find myself laughing at a memory because I completely forgot about it until I saw the image. And I realized something else; I am completely blessed by this life.

I truly have the best family. A family that is 100% available for any need. I have the best friends. Friends from all walks of this life that have passed through, some even staying a while. I have gotten to see much of this vast country because of trips to see these lovely friends. I have seen quite a few other countries; making memories with loved ones in each. I have had opportunities to attend concerts, sporting events, and festivals.

I say all of this as an opportunity for perspective. I know lately my life has completely been dominated by dealing with this medical battle. I also know it wont always be like this. I know there will come a time where I can look back and talk about this part of my story. Remember it, give it the respect it deserves and move on. It is not my identity. At some point in the near future I will be able to say, I am a survivor.

I decided to include some pictures from this last weekend with my friends. It was incredibly special that they took time from their busy lives to come out and visit. I have been so supported through this whole journey by so many. Thank you all!

...been a while

My apologies for the long silence from me in this medium. Today is the first day I have felt well enough to write. Round 3 seems to be taking its toll on me in a way the other rounds were unable to. Whether it is the sheer amount of chemo in my system or if my body is fighting some sort of bug, its been a tough week.

This past weekend, some of my lovely college friends visited. It was fun to see them and have conversations that warmed the soul. I almost felt "normal" for a short period of time. All weekend I was tired, but could not sleep. Had feelings of nausea, but more feeling at any time I would vomit. The feeling of fatigue took a new level when I was unable to sleep more than 30-45 minutes at a time for 5 days in a row. The feelings of being strung out and weak were imminent.

I was able to hang out with friends and take small walks in the neighborhood. We made some memories together and more importantly I was able to have good, heart warming conversations with all of them. Its amazing to see how far we have all come in the last 10 years (gasp! 10 years since my freshman year of college).

The chemo brain continues to consume me into this week. I would love for my words to be elegant, but this is what I am capable in this moment. So, I am being true to that. I have been very loved by the people around me here in Portland and for that I am grateful. I am working on a host of thank you notes; so stay tuned if you recently sent something my way.

I have a doctors appointment tomorrow where we should get some sort of plan for the last round of treatment and maybe some new ways to manage the lack of sleep and onset of "vomit" feeling. I will be sure to update you all soon.

As always, thank you for your faithful thoughts and prayers. There is a dim light at the end of the tunnel. I am working to build up strength for that final round this week and next.

friends! 

One more round

Just wanted to give a quick update. I mentioned at the beginning of the week they would determine if I would be done after this cycle or need to complete another one. My AFP tumor marker came back substantially reduced, but high enough to call for another cycle. My doctor was very impressed with the drop (from 2300 to 127), but would like the cancer marker to be 0.

I am bummed I have to do another 3 weeks of this, but thankful the chemo is doing it's job. My oncologist has been very positive with my body's response to the chemo and my tolerance to the regiment. Which is positive. 

My dad and sister were able to join me this week for chemo and this weekend some of my college friends are in town to hang out. Very excited to rest with these awesome people. 

Will post more later, just wanted to update everyone that I will be doing 4 cycles instead of 3.