Hi everyone, my name is Chris and Ben has graciously invited me to be a guest blogger and share some thoughts on my own journey with cancer. For reference, I am Elaine’s cousin and Ben has mentioned me a few times in his posts since I have unfortunately been down this road when I started my journey last summer.
So, I thought what would I write about? There are about 20 different directions this blog post could take so what would be the most helpful? Where should I start? Can I manage to put together a few paragraphs let alone enough words for a respectable blog post? What would I want to know if I or someone I loved were beginning this process? So I decided to talk about everything since you never know what little tip or experience could help someone else on their own journey.
One great thing I have found is that when people have gone through this crap they are more than happy to share tips on how they coped, things that helped, foods that were easy to eat, etc. It is part of the process and sort of a cancer journey unwritten code that you share tips and tricks with others to help them through all of this. No one should have to do this alone and you don’t have to because we all got your back.
When I visited Ben and Elaine during his first infusion I pretty much knew what they were both feeling (especially Ben). It is nerve-racking, scary, and not at all what you thought you would be doing just a few months before. So I was happy and honored to join them just to give some extra support. When I walked into the university clinic, a place I have come to know very well, I made my way to the cancer center on the second floor. As I walked through those double doors all those memories came flooding back from the times I was here – under very different circumstances. I found the pod where Ben and Elaine camped out for a few hours, I felt the same wave of anxiety I had on my first infusion day – ohmygod this is really happening. Ugh.
Ben and Elaine were in good spirits and much more relaxed than I expected so that was nice to see. We chatted, played a fun card game called “Beans” or something like that. I mentioned a few tips and tricks that I discovered along my chemo journey in the hope that they help Ben and Elaine through a very sucky time. I mentioned my infusion day ritual, which was that after I was finished, I would go to eat at B-Dubs. I wanted to do something fun to balance the suckiness and since I was still feeling well I wanted to get some real food before I was relegated to eating less fun food for several days. Wings and fries were a great way to ease my way into the chemo fog and yuck that was to come. That said, I encourage others to find something fun to balance the suck – find your “chicken wings” or whatever makes you feel better and less anxious on a day that bound to be stressful and exhausting.
Each person’s chemo regimen is different, based on many different factors (the type of cancer, stage, age, health status, etc.). I had a double cocktail, the first part being Doxil which was given in-clinic. The second part is Ifosfamide which was a wonderful (sarcasm) 7-day fun fest where I carried a nice not-at-all-stylish man-purse filled with the most foul smelling stuff you could imagine. This foul stuff would slowly flow into me over those 7 days which means I needed to carry this man-purse with me everywhere. And when I “forgot” that it was attached I was quickly reminded of its existence by a not so gentle tug on my port needle that signaled “hey you forgot something over here.” Sleeping, eating, walking, taking a shower was all done with my smelly man-purse until it was taken away by a home nurse on day 7.
Because of that awful smell, we tried all sorts of things to mask it as much as we could. I put stick-ups (remember those?), charcoal pads, and even my favorite scented dryer sheets in the bag. Some of it worked ok, but nothing got rid of the smell completely so I had to endure it – which made getting untethered from the bag on day 7 all the more enjoyable. The fun part was as the chemo drugs kicked in, the nausea would ramp up and the smell would add to it. Sometimes I think that smell made me more nauseous than the drugs themselves, but who knows. The bad part of this is that those scented dryer sheets are now associated with the chemo smell and every time I smell them I get a wave of PTSD-like nausea. As a result, I needed to find new dryer sheets that didn’t make me want to hurl every time I do laundry. Hmmm, maybe that could be used to my advantage though…sorry I can’t do laundry because it makes me want to vomit. Not sure that would work in my household, my guess is no, but might be worth a try.
A tip I got from one of my good friends when her mom went through chemo last year for breast cancer was around food. Certain foods you eat during chemo could give you a negative association when you eat them after treatment. You may not be able to eat those same foods because your taste changes or you simply associate those flavors with chemo each time you eat them. So you may want to be careful not to eat a lot of your favorite things while you are sick. This was all fine with me since I didn’t really feel much like eating anyway while I was going through chemo. I ate lots of bland foods, instant potato flakes (fake potatoes as we like to call them), mac and cheese (blue box) as comfort food, ramen, saltine crackers and toast with butter. Not the most daring and exciting palette but it worked. During my first infusion, I barely ate at all because I just didn’t feel like it. I was nauseous all the time and the last thing I wanted to do was eat. I ended up losing 30 pounds which has been a goal of mine – this was not necessarily the way I wanted to achieve that milestone but I digress. I remember the doctors telling me after a checkup when I weighed in 30 pounds lighter. Their words were something like “You need to stop that now, eat more food, and gain back at least 10 pounds if not more.” Fear not, I gained it back and probably not by eating apples and bananas. Most of it probably came from chocolate chip cookies – they said to gain back the weight, they didn’t give specifics on how.
Each infusion seemed to get a little easier and started to figure out patterns so I could prepare for what was to come. Days 1-2 were fine, B-Dubs it up baby! On day 3 I started to feel yucky and that increased as the days went by. Day 7 was one of the worst days which made the infusion bag removal all the better (see above). Funny thing is my very worst day was day 10 which was well after the infusions stopped and things were supposed to be calming down. Strange stuff. One thing I did during infusions, and all the way up to about day 12, was to take it very easy. I still worked during this time but I kept a very loose schedule. Thanks to my awesome boss (more on her later) who gave me the freedom and flexibility to take time if I needed it. And I did. I would take a nap nearly every day during days 3-14. Some days it was a 15-minute sit down with my eyes closed. Some days it was a full on 2-3 hour nap on the sofa.
The key was that I found a pattern that worked well for me. Get out of bed around 6:30 just after Andy (my partner) would start to get ready for work. I usually felt sorta ok but would start to feel yucky within 15 minutes so I would eat something right way to help settle my stomach. Usually yogurt or some toast. I found that, when I felt nauseous, if I ate something it would generally help but if I needed reinforcements, I had my anti-nausea meds too. If you are going through this be sure to use those drugs if they are needed. I cannot stress that enough. Granted they have side effects of their own (think constipation) so I also took a dose of Miralax each morning to counteract those side effects. In fact, I started my Miralax regimen on Day 1 to get a jump on counteracting the constipation that would inevitably come. Hey, pooping is a good thing, so try to keep things moving along down there – it is NOT fun when things don’t. Keep eating, drinking tons of water, and use whatever meds you need. This is your journey and you need to do whatever you need to do to feel good.
A little side note before I get into the next step. When I got my diagnosis I was in a state of shock. Full disclosure: I sort of expected it since I could tell from what was going on with my body, but hearing the news was still like getting hit by a semi-truck. I didn’t know what to think or do. Luckily my doctors did and it was full steam ahead. I was trying to navigate this the best I knew how which really means I had no clue what to do or what I was in for. My cancer was a pleomorphic sarcoma (what the hell is that?), very rare and very aggressive. And it was in my leg which is odd. The tumor was nestled between two of my leg muscles which isn’t a place you would expect it to be. My mom always told me I was special.
Since my cancer was so aggressive (it went from nothing to stage 3 in 8 months) the treatment was just as aggressive – from diagnosis date to the first infusion was just 15 days. Wow, that is fast. And those days were filled with lots of trips to the clinic for things like a PET scan, doctor visits, talking with nurses, lab tests, echocardiogram, surgery to insert my chest port, more lab visits, more doctor visits, etc. I was in the clinic nearly every day for those 15 days.
Getting the news you have cancer is a kick to the gut. I remember the string of very colorful words that came out of my mouth after I talked with the doctor. Each person reacts in a different way. I needed time to process this whole thing and how this will forever change my life. I did tell close friends and family but kept this news off of social media since I didn’t want people to freak out and worry while I was still coming to terms with it myself.
Which makes this blog all the more important and, dare I say, a bit revealing. Ben has chosen to put it all out there for the world to see. I don’t think I could have done that myself, but I see how important it is to show the world that you don’t have to fight this battle alone. If I had seen this blog while I was on my own journey, I might have felt a bit more comfortable with sharing my diagnosis – this blog would have helped pave the way. Now I can make up for any lost time and share what I know and hopefully pay this forward to the next person. Thanks to Ben for being a pioneer!
Along the way, I did need to tell people and slowly expanded that circle of support. One person I need to tell was my boss since I needed some time off from work for all the craziness that was about to ensue. She gave me a piece of advice and I can’t tell you enough how much it helped me navigate the following months. She told me when something this big and scary is placed into your path you need to take it “one step at a time and put one foot in front of the other.” Don’t think about 3 months from now or even 3 weeks from now, focus on the now and do what you need to do in this moment. Do what you need to do to fight and get better and focus that energy on kicking this shit to the curb. There wasn’t a day that went by that I didn’t think about those words. They helped me be brave enough to face the scary days, grateful enough to embrace the little victories, strong enough to endure the truly awful days while keeping it in perspective and persevere through it all. Because you know by taking each one of those steps you will get through this and emerge better than ever, even when you don’t think you can make it through a single day of the yuck.
I have a lot more to share (radiation and surgery stories) but will save those topics for another post. For anyone following this blog that is going through treatment (chemo, radiation or anything else) or those of you who know someone who is going through this, always remember that people everywhere are rooting for you. We are cheering you on and sending you good vibes all the time, in all sorts of ways. Keep the faith and a positive attitude, you will get through this and emerge stronger and better than ever. And remember to eat your “chicken wings.”
Chris Thank you for being such a great support and knowing you struggled through this so recently also. So glad you were able to keep us all informed as you went through treatments helped us deal with it also as Ben’s blog keeps us positive and helps us deal with it also. You both are Special people and loved by all. Keeping you both in my thoughts and prayers. Love,Char
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As far as the bad smell goes there is an odor diffuser called X-O that works real good to neutralize really bad odors. I used it when I had a colostomy bag. You can get it concentrated or mix it to make a spray for the air, etc.
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Thanks for sharing, Chris! Very informative and I love your points about how we are all rooting for one another. I just got home from my fourth infusion, lying in the sun with my fanny pack now, wishing I had some chicken wings…
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