Lessons Learned From Surviving Cancer

Hi everyone,

An article about my cancer experience was recently posted on campus.about.me. Check it out, the link's below!

https://campus.about.me/2015/07/07/lessons-learned-college-student-cancer-survivor/

As usual, if you have any questions or ever want advice (or support) from a patient's perspective, feel free to reach out to me at sdakwale11@gmail.com.

Thanks,
Raub

Relay For Life Talk

Hi all,

I do some speaking for the American Cancer Society, mainly at various Relay For Life's. Here's a speech I did at Wissahickon Valley's Relay For Life in Pennsylvania. Enjoy!

Resources & Blogs I Like

Resources that were particularly valuable to me:

1. http://www.tc-cancer.com - the support forum is amazing. The wealth of knowledge, experience, and high level/intelligent discussions concerning TC is a godsend. My username is underdog521, feel free to reach out to me if you ever want to talk about something.

2.http://www.nccn.org/index.asp - This is pretty much the official resource many, many oncologists (in the US) use to treat their patients. An account is free so just sign up and then flip through the official guidelines for TC treatment in this section: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

Blogs I Like:

1.http://lessthannuts.blogspot.com - This is an amazing blog about one patient's "journey" with TC. Extremely well written, very approachable, witty, and very much reminds me of my internal monologue throughout this entire process. I highly recommend you at least skim through it

2.http://emajoehealth.blogspot.com - This is another nice blog that's written by an American who underwent chemo in Estonia. After reading the first 10 posts closely I've skimmed through the rest and honestly, it's written like a story which I LOVE. It's like an e-book of the tales of a TC patient. <-Awesome

3.http://knowguts.wordpress.com/2011/10/22/how-to-be-a-patient/ - This blog is actually a friend of mine (Benjamin Glickman's) blog about his condition known as Ulcerative Colitis. His blog is actually the inspiration for this one! The majority of the blog is irrelevant to the topic of this blog however this one post titled "How To Be A Patient" conveys an important message and I think is a great message to all hospital patients, including cancer patients. Give it a read, I'm gonna call it the 10 P's of Patienthood!

4.http://www.youtube.com/watch?v=gvYoMGy3iHE&feature=relmfu - This is a vlog (for you older folks that's a video log, like a diary) of another stage 3 TC patient! Also, the particular video I've linked shows what hooking up to a portacath looks like since I wasn't able to show you guys that.

5. http://community.macmillan.org.uk/blogs/b/scared_but_in_good_hands/archive/2012/02/20/top-tips-for-making-bep-chemo-manageable.aspx - Found this post online, it's well written and to the point. I definitely found some of his tips (particularly 1,9, and 10) very relatable!

Days 15-21: Finish Strong

Day 15: Went in for my weekly blood test, nothing big happened. My veins have held up pretty well over chemo, I didn't have to switch to a portcath! One thing though: when I got my bloodwork back, my hemoglobin and RBC counts were both a little bad and I let it psyche me out for a bit.

Day 16: Today was an interesting experience. I went in for my final chemo treatment and unfortunately my nurse completely missed my vein the first time around. Usually this isn't a problem except that we thought she was "there" (as in had the iv placed properly in the target vein), and dressed the IV. 5 minutes later my forearm was in a ton of pain as the saline hydration drip was pumping into my tissue/muscles rather than a vein! Really glad it was saline being pumped then and not bleo.

So how can you avoid this? From what I've been told by my nurses, here are signs I was looking for to see if my line was misplaced and needed to be removed immediately:

1. Pain around the site.

2. The area around the site looks puffy or swollen.

3. Pressing the area around the IV site makes a squishy sound (which still haunts me).

4. Not getting a blood return in the IV when the nurse checks for it.

This probably goes without saying, but my patient-POV advice is to alert your nurse when these happen because it's probably not good if chemo is pumped into you and your IV isn't properly placed. For me, the saline the pain/puffiness easily disappeared within 5 minutes and I was good to go.

Day 17: That last hit of bleo was a double edged sword; it was a huge mental victory knowing no more toxic drugs would be entering my system... then that bleo shot knocked me down more than any of the previous ones had. Day 17 was spent just relaxing in front of the TV, with this weird taste in my mouth (from the bleo) and that taste resulting in a little nausea... sort of like you're constantly forced to taste a food you don't like and when you drink water/swallow your saliva, it's like you're swallowing that food. Pretty unappetizing.

Day 18: The bleo's got a pretty steady grip on me still, I actually had to take another Reglan today just to make it through without wanting to throw up. Unfortunately whether I wanted to or not... yeah. Although you may not feel it, during chemo there is always a possibility of the nausea instantly overwhelming you or your stomach rejecting something for no good reason.. such is life under the chemo spell.

Day 19 and 20: I've finally come to terms with the fact that I have/will have for a while, mild peripheral neuropathy in my hands, no biggie. To be honest, the only thing to report is that I'm living real life again at this point with two exceptions:

1. I'm always a little tired (like literally eternal tiredness)
2. I'm really out of shape and can't do much physical activity without getting tired quickly.

Day 21: Hung out with some people as usual and tried to see how much physical activity I could take playing Spikeball. The answer? Not much, and I think that's the most annoying part of this whole process. My new 100% is like 60% of my old 100% and it's really hard for me to even get to my new 100%. My mind is now wandering to my CT scan tomorrow morning.

That's BEP chemotherapy for you. Week 1 is the roughest, Week 2 is okay, and Week 3 is the most bearable. If you ever have any questions, feel free to post a comment or reach out to me at sdakwale11@gmail.com and I'll be happy to answer. I get an email anytime anyone comments and I check my email often. Plus, I'll probably read through this every once in a while to remind myself that though sometimes things may seem bad, everything is manageable if you're willing to take the time to understand and willing to work on the details.

Since I watched Toy Story 2 yesterday: "To infinity, and beyond!"

Day 9- Day 14: Returning To Life, One Step At A Time

Hey guys, sorry I haven't posted much, there just hasn't been much to update anyone on. I've been feeling back to 100% since Day 11!

I guess let's do some notable highlights, though.

Day 9: I got off Zofran, but stayed on Reglan 2-3 times a day. Nausea 4.5 Fatigue 2.5 Oh, and I received bleo today, no side effects whatsoever other than the fact that the veins in my arms are tired of being stuck, seriously. As was prescribed to me when taking bleo, I pre-medicated with Tylenol, and followed up with 1 dose every 6 hours for 24 hours after.

Day 10: Felt that last bit of my energy come back and I just kept on enjoying my summer vacation. Nausea still not great. Nausea 4 Fatigue 1

Day 11: I actually went to California Great America with a few good friends.

I rode (the most modest) thrill rides too without getting nauseous! Major personal win. Nausea 2.5 Fatigue 1. Did this all day and then went to the Harry Potter 7 Pt. 2 premiere later that night.

Day 12: Nausea 2.5, Hung out with my friends by a pool.

Day 13: Road trip down to Santa Cruz for a day with some friends. Something interesting actually did happen here. I was enjoying my day with my friends and we were hanging out at the beach, which for those of you not near Santa Cruz, California, is awesome and also located right next to a boardwalk amusement park.

I was walking on the beach barefoot as we were searching for a volleyball court when all of a sudden I felt a prick on the bottom of my foot. A piece of wood in the sand had its jagged edge pointing up and had made a 1 cm cut across the bottom of my foot! I was barefoot in the sand so my knee-jerk reaction was to move put my foot down in a different part of the sand. So now I'm a chemo patient with a weakened immune system with a cut on the bottom of my foot that is filled with sand that's been who knows where. My mind immediately created a list of things I had to do in the next 30 minutes to reduce the possibility of infection:

1. Keep calm, flipping out over a cut will never do anything, I reminded myself that my platelet and WBC counts came back really nice this week, so the bleeding would soon stop and that my body could most likely handle an infection IF it came.

2. Wash the cut. Priority number 1 was to do as much as I could as quickly as I could. So I hopped into a restroom on one foot (still barefoot) and washed it off with water as well as made a makeshift pressure bandage with a fresh roll of toilet paper, so that when I put a sock over my foot, The sock wasn't actually touching my foot and and bleeding (if it occurred) would get caught on the tp.

3. Get a clean sock over that foot. Had a friend of mine bring me my socks from where we were on the beach.

4. Get to the boardwalk's first aid office, run an alcohol swab over the cut, and bandage it. Check, check, and check.

I also took 2 extra alcohol swab packets and 2 bandaids with me and as the day progressed I checked on the cut two more times to make sure I had gotten all the splinters/sand out, and that it wasn't getting inflamed. I re-bandaged the cut each time after an alcohol swab.

My approach here: During chemo, don't underestimate anything, treat every situation carefully; it's the little things that get you.

Oh, one other little thing: On the way back to Santa Cruz we went to Buffalo Wild Wings for dinner, luckily I've been keeping a Reglan on my person at all times in a plastic bag to stay ahead of potential nausea. I had to have it before we even sat down at the table but by doing so, I avoided a potentially bad situation.

Day 14: Pretty uneventful day again. I laid on the couch all day reading Ender's Shadow, one of my favorite books, for the 10th time and it never ceases to interest me. The reason for laying in bed was to give my cut as much time & room to heal as possible. Also changed the bandage on it to a more pad-like bandage with more coverage on it because I knew I'd be walking around later that night (with socks on) at my friend's going away party. I am back to 100%. The rest of this cycle should by all means be a breeze unless complications from my cut or some new injury/illness arise.

Day 8: Blood Tests During BEP Chemotherapy

On Day 8, the pill schedule changes again:

Morning: 1 Pepcid

Night: 1 Pepcid

As Needed: Zofran (up to 2), Reglan (up to 3)

I finally felt as if my body was settling down. Unfortunately, it chose to settle halfway between the swamp picture and forest picture, but I'll take it! The thing about blogging about day 8 is that chemo recovery is nothing but a waiting game; you live your life to the fullest extent possible, and wait for the side effects to slowly subside.

On day 8, I didn't do much; went to the library to pick up some books to read (Ender's Game and Ender's Shadow by Orson Scott Card, my two all time favorites) and went to get my weekly blood test, which since we haven't covered yet, we shall now.

Blood Tests & BEP Chemo

If you're reading this blog, then you've almost definitely had a blood test in the past. I won't delve into the basics of what a blood test looks like. Long story short, the tech finds a vein on your arm, sticks you with a needle, fills up some 5cc or 4cc vials, and then slips the needle out and gives you a cotton ball & med tape dressing.

A few personal reflections on things to keep in mind as a chemo patient having blood tests:

1. You're getting stuck with needles all the time for your chemo treatments. this means your veins will be thinner, more fragile, and overall harder to stick.

2. Because of this, as a chemo patient, I don't want to have a student draw blood on you. When I was assigned to a student, I'd ask for a professional and note that you're an oncology patient. They understand, getting stuck over and over isn't fun.

3. Drink 50 oz of water between 4 and 2 hours before getting blood drawn. Hydrated veins mean happy, easy to stick veins. Easy to stick veins means less getting jabbed!

Bloodwork that was ordered for me during a chemo Cycle:

Day 0- CBC+Metabolic Profile, AFP, LDH, HCG, Creatinine, AST

Day 8- CBC+Metabolic Profile, Creatinine, AST

Day 15- CBC+Metabolic Profile, Creatinine, AST

Day 21*- CBC+Metabolic Profile, AFP, LDH, HCG, Creatinine, AST

*Day 0 of the next cycle

*DISCLAIMER: The below characterizations of these tests are not intended to serve as medical advice nor should they be interpreted as such. Just a lay-patient trying to paraphrase things that have been said to me by the medical professionals who care for me. Talk to your doctor, ask questions, be an active participant in your treatment, etc.*

What are these tests?

CBC= a Complete Blood Count. This test finds out everything concerning the make-up of your blood, from your red blood cell count to your white blood cell count to your platelet count. On top of that, a WBC differential will also figure out what the concentrations of different types of white blood cells are in your blood.

Metabolic Profile= This test finds the sodium, magnesium, potassium, and calcium levels in blood. Cisplatin causes fatigue by messing with these levels, so it's good to monitor them.

AFP= AFP is a normal fetal serum produced by the liver. It is very evident in fetal plasma but then quickly dissipates after birth. Because you're not supposed to have much of it in healthy adults, it is a very good tumor marker, or cancer indicator.

HCG= HCG is a hormone found in pregnant women. It is the same hormone that is detected for in pregnancy tests, and also the one that causes nausea, morning sickness, pregnancy cravings etc. Since men don't have babies, they shouldn't have this hormone, and so it is another good tumor marker for testicular cancer as it will be elevated should TC be present.

LDH= Lactate Dehydrogenase is a third tumor marker but not as much for the specific type of tumor, rather for the sizes of the tumors (tumor mass).

Creatinine= Creatinine is left over after the muscles break down creatine phosphate. It is mainly filtered out by the kidneys. Because Cisplatin is nephrotoxic, monitoring kidney function is critical to prevent kidney failure should it get overworked and watching the creatinine counts is a good way to do so.

AST= This enzyme is generally found in low levels throughout the blood. When an organ such as the liver is damaged however, AST is released into the bloodstream to help repair the problem. Chemotherapy isn't exactly the best thing for your body, so monitoring AST levels can be an indicator of possible organ damage.

Day 7: The Side Effects They Don't Mention

I woke up at roughly 8:30 on Day 7 and I definitely felt better than Night 6. However, I was still in the hole dealing with the following symptoms:

1. Nausea (I'd rate it @ 5)

2. Fatigue (3.5)

*this might start getting a little uncomfortable to read, but this is to help out future patients so...*

3. Gas - They don't mention this side effect much when they talk to you about chemo but it happens. Here's how I envision chemo's effect on the GI Tract.

Pre-chemo: Imagine a pristine forest with a thriving but peaceful ecosystem, lots of greenery blue skies, and a clearwater stream running down the middle of the picture.

Post-chemo: The forest is now an orange skied apocalyptic wasteland, the ecosystem has mutated and that stream is now this slow-moving toxic sludge. This is the image that comes to my mind when I think of what could possibly produce the amount of gas in my system on Days 6 and 7. Eventually though as with all things, if you heal it right and give it time, it'll be beautiful again.

4. Constipation - Side effect of Zofran for me. No big deal, but stay ahead of it or there's a massive pain penalty involved.

5. A general uneasiness.

Day 7 wasn't eventful. I think that can actually be a problem for some people. It was for me. I kept looking at the clock and wondering to myself, "why is nothing happening?"

I wouldn't be normally be annoyed about nothing happening, but I didn't feel good yet. And man, I wanted to feel good. By around 8:30 pm that night, I was chatting with an old friend and I had a minor (though really obvious) realization that helped me just keep chugging along:

It is okay that three hours passed and nothing's changed, because I know for a fact that things will get better. Therefore, those three hours that have passed are three less hours I will ever have to deal with this and the 'better' part is now inevitably closer.

Problem solved.

Day (and night) 6: No Man's Land

Update-

Day 6:

Change to Pill Schedule- (will change again on Day 8)

9:30 AM:

1 Pepcid, 1 Reglan, 1 Zofran

3:30 PM:

1 Reglan

9:30 PM:

1 Pepcid, 1 Reglan, 1 Zofran

Day 6 went by relatively well, all things considered. During my last two cycles I'd come to realize that talking on Day 6 was always annoying because my mouth did not want to move (probably a personal thing), so this time I camped out in front of the TV with roughly 50 otter pops and watched almost an entire 14 hour Harry Potter marathon, trying to wait out this storm out (eating small meals every 2-3 hours and moving around during commercials).

It actually worked pretty well and I was feeling pretty good so I decided that yes, I was doing well enough to go sit in a restaurant with my friends for an hour or two.

Bad Decision. I think a "rule of chemo" that should exist for recovery after the intense part of a BEP cycle is to stay home. Regardless of how you're feeling, stay inside your own house. Within 2 hours I was back home, laying on my side, curled up in bed. From there the night just got weird.

1:20 AM- I woke up with a gassy feeling in my stomach, as well as pressure in my abdomen. I sat up and stretched a bit. Stretching amplified the discomfort. So I stopped moving. 5 minutes later, things settled down. Okay, I thought to myself, just focus on some inner peace and sleep it off.

1:50 AM- I'm still awake, just lying there very still. Why? On my way back into bed I passed by my copy of Lance Armstrong's It's Not About The Bike and my mind began to wander... What if BEP wasn't enough to get me an all clear? I knew what the next lines of treatment (TIP, VIP) were like and they scared me. It wasn't the chemo part of them that scared me (though it's going to a hell of a ride if my situation ever comes to that), it was the fact that I'd be an in-patient and need a catheter. As someone who, at the beginning of my chemo cycles, had to have his IV covered up during treatment the thought... it drives me insane.

I love to be challenged. As an athlete, I crave being down at the start of the final round. I willingly train myself to take in as much pain and discomfort as possible and just keep begging for more. As an 18 year old (generally) healthy guy, I love pushing myself to the limit and working through things to live life. Nausea? Bring it. Fatigue? Yeah, I've run suicides for hours on end before. You want to run a plastic tube into my what? ARE YOU KIDDING ME?! How do you even get that in there?

And that was that. For about an hour in the middle of the night, I was starting to have a mental breakdown for the first time. It's those damn 'what if' questions that get you. As hard as chemo seems, it's not the chemo that's the problem; it's the darkness of all the stuff before and after chemo.

4:00 AM- I fell asleep for a little bit and then woke up feeling restless but fatigued. It was the most frustrating feeling on the planet; I wanted to get up and move around, but it was as if I had no command over any part of my body to do so. Add in the nausea and gassy stomach.. yeah. I found it within myself to get up and walk downstairs by 4:30 in the morning and I grabbed 10 otter pops out of the freezer, sat down on a couch and ate them slowly; 1 by 1, trying to focus on anything but the words cancer, chemo, bep, nausea, tired, why, (I can add in a couple swear words here), and pain. Eventually though I did think of something that helped me pass the next 30 minutes. Harry Potter probably saved my sanity that night:

You know how in the 3rd Harry Potter movie, when Professor Lupin's trying to teach Harry to conjure a Patronus charm, he has him think of a happy, strong memory to use in fighting the dementors? YEP, pulled a patronus and fought off my chemo side effects. The most damningly effective part of my support team was the fact that I knew they existed. So I zoned in on the happiest, strongest memory I could think of - it worked.

At this point it was 5:15 in the morning, I was exhausted and crawled into bed. I fell into a deep, somewhat relaxing trance-like state. I figured I'd need whatever creativity I had left in me to tackle Day 7... because I knew this one wasn't over, not by a long shot.

Day 5: Adapting to the Effects Of Chemo

Hey, everyone!

It is 7:01 AM.

Woke up this morning feeling substantially better. Don't get me wrong, I have a sick feeling in the pit of my stomach (almost like a signifier that I'll be keeled over for a little bit this weekend), but more on that later. Today is my last intense day of chemo and I'm EXCITED.

Fatigue- 4

Nausea- 5

Warm water seems to go down more easily than cold water right now. I think it's because it keeps this viscous layer around my mouth that forms during intense weeks from making me gag.

I think a fitting topic for me to talk about when I get back today is adjusting your habits; both during a chemo cycle and between cycles.

For the last 5 days I've tried to do these posts with one part in the morning, and a video in the afternoon/night. My goal was to try and give you (and myself for that matter) two check-in points to see on how fatigue and nausea can change throughout the day.

At the moment:

Fatigue 5.5

Nausea 6

Sorry if that wasn't a particularly helpful video. Good news is that a lot of those concepts have been covered in previous posts (eat healthier, listen to your body, etc.). Bad news is that it's up to you as the patient to follow through and have the fortitude to stick to your plan even as the going get tougher.

Activity log:

3-4:30 PM, hang out at a friends house.

7:45-9:10 PM, beat my dad at Tetris.

"Insanity: doing the same thing over and over again and expecting different results."

Day 4: The Importance of a Support System

Woke up in the morning not feeling good, but not feeling bad either. I seem to have hit the midpoint between the two for the first time in my three cycles. It's an odd feeling.

Fatigue-3.5

Nausea-5, likely being enhanced by an increasingly bad taste in my mouth.

So, my nurses only allow an IV to stay in my arm for three days at a time. This means I had mine removed yesterday and will have a new one placed for today and tomorrow. One trick I've found helpful to avoid getting poked too many times is to drink warm water 1-3 hours before my chemo appointment. Warm water can:

1. be drunk in larger quantities than cold water, and
2. be used by your system much faster than cold water. When you hydrate well, your veins will appear to bulge and thus your nurses will have an easier time placing their line!

By the way, it is becoming increasingly harder to stay focused so forgive me if some of my sentences sound odd.

So today, it only took one jab to get me. Left the IV in for tomorrow. The line was pretty strong and I'm not expecting any problems.

Activity Log:

7:30 PM to 9 PM- Went to the do-jang (I practice ITF taekwon-do) and saw a friend who's currently visiting from Utah! I wasn't in any condition to train, but it felt nice to be there.

Day 3: Nutrition And Chemotherapy

Hey guys,

I woke up this morning and, while my fatigue has remained constant, I would say that my nausea has jumped from a 2 to a 3.5 or 4; I'm starting to lose my taste. I'm not expecting anything out of the ordinary today at the chemo ward, just etoposide and magnesium for 1 hour, then cisplatin for 1 hour, and finally more magnesium for 1 hour. Count in bag changes and other minor time delays (pills, vitals, waiting room) and it should be about 4-5 hours. Anyways, since I'm not expecting anything worth noting, I'll make today's post on food during chemo as well as some tips on how to deal with losing taste.

* Notice how my breathing's a little heavier

* It's a little harder to keep a steady train of thought.

*Disclaimer* the do's and don'ts below are not intended to be medical advice and should not be interpreted as such. Talk to your doctor before proceeding with any nutrition regimen, etc. I'm just sharing practices that worked for me in a list format.

The Do's and Don'ts I followed during chemo cycle:

DO eat a balanced diet.

DO get in calories & protein. This and activity are the keys to avoiding fatigue.

DO prioritize preventing weight loss.

DO ask your nurse any questions you may have! Most hospitals have a chemo advice nurse hotline you can call 24/7!

DO look on the bright side and cling to the foods you can eat that still taste good (rather than moan over what you temporarily can't eat). For me, a positive attitude has gone a long way in getting through chemo. For example, I love sushi and haven't had it in seven weeks. It doesn't bug me though; I understand that this is temporary.

DON'T eat any sushi, rare meats, or any raw vegetables that haven't been thoroughly washed. You don't have much of an immune system, remember?

DON'T try too many new foods. If your system has never tried to handle it before, it's probably not the best time to test the waters.

DON'T eat anything that will give you gas or heartburn. Avoid spicy foods and beans. If I understand correctly, spicy foods can cause ulcers in your GI Tract (chemo attacks all quickly replicating cells including the mucous-y ones in that line your stomach)

DON'T sleep less than 30 minutes after eating. Think of all the common sense tips your mom gave you when you were 5. Essentially, all of them are making my life infinitely easier right now.

DON'T get cocky and think you can handle things you can't. Act conservatively. I was talking to one of my nurses today and I do really value her words when she says, "Remember that you have a new normal now, and even after chemo you have to 'earn' your previous body back." Chemotherapy will cause your body to change in make-up; your nutrition & exercise will help determine just how much!

Activity log for today:

5 PM-7:30 PM: Head over to a friend's house to play video games.

7:30-8:30 PM: Head outside to a park to get some fresh air and play a little basketball.

9:30-10:30 PM: Play poker with family.

As you can see, none of my activities today required too much exertion, however they helped brighten my mood and made my day much easier. Keep Purell with you at all times to keep your hands sanitized.

"You don't beat cancer. Chemo beats cancer. You survive chemo."

Day 2: Keeping Your IV In, Bleomycin, and Staying Active

For those of you bad with needles, IV's, or have weaker veins but don't want to get a portcath. My veins have held up decently well, but I had to get stuck 5 times yesterday, so I asked for them to leave my IV in my arm for the next day (yes, it's possible). They do so by using cobalt to hold the line down nicely and giving you a compression stocking to ensure nothing comes loose. It can stay in for three days, so I'll have it taken out Wednesday after chemo.

Pros:

1. Knowing I'm not getting stuck today takes the edge off the whole process. I had a bad experience with needles as a little kid, so having that memory in the back of my mind has made getting poked the most stressful part of the hospital routine.

2. Your other veins get a rest! Chemotherapy is intense on your veins, and any opportunity to let the majority of your veins breathe is a huge plus.

Cons:

1. It's a bit of a nuisance to live with sometimes. You can't play sports, do much heavy lifting, etc. because well, you've got an IV in your arm.

2. Showering with it is odd. First, I have to take saran wrap, put it over the entire region and tape it down with water proof tape. Then, my nurses also recommended I take a plastic bag and cover my forearm and tape that down. This is a necessary precaution because during chemotherapy, one is much more likely to get an infection due to a suppressed immune system. If water were to get into the wrapping area, it would be a great place for bacteria to breed.

So. Day 2:

Here's what the administration of bleomycin looks like. Unlike etoposide and cisplatin, Bleo is given at a rate of 1 cc per minute as an injection through the IV (it doesn't hurt). 10 cc's (my dosage, and my understanding is that it's the standard dose) takes about 10 minutes to administer.

Final Note:

My AFP from 7/2/2011 came back at 2.6!

7/2/2011

(A): 2.6

(H) <2

Day 1: A Typical Visit to the Chemo Ward

Hey, folks!

So, Day 1. I guess I'll give you all a breakdown of which pills I'm taking each day.

At home:

Ativan- 1 pill (controls anticipatory nausea & anxiety)

Pepcid- 1 pill (controls stomach acidity)

Emend- 1 pill (long-term nausea, I take it for days 1-3 of each cycle and it lasts 21 days.) This drug can be administered via IV, however on Cycle 1 Day 1 I experienced an allergic reaction to an ingredient in the IV bag (polysorbate-80).

At hospital:

Decadron- 3 pills (controls nausea, but also makes me super anxious, energetic, etc.)

Zofran- 2 pills (controls nausea)

Reglan- 1 pill (controls nausea)

At home tonight:

Reglan- 1 pill

Pepcid- 1 Pill

This pill schedule, except for the Emend, will continue until day 6.

That seems like a lot of pills just for nausea right? Paraphrasing what my nurses told me in my first cycle, the key in understanding why I need  multiple drugs for nausea is that each of these attacks a different part of the brain. Together they are very effective in curbing the effects of nausea.

So, what is a typical chemo day like? To answer that question, I made a short video on my experience today in the chemo ward... Enjoy! (Forgive my non-existent editing skills.)

**3/31/2012 EDIT**: Found a video of a TC patient having his port hooked up during his chemo session for those of you who'll be using a port for your treatment. See here!

My condition after the chemo ward: I am currently roughly 4 hours post-chemo, and I'm feeling completely normal for the most part. One side effect that's already hitting is the fatigue, but it's not heavy nor mental. Basically, my legs feel tired like I've been hiking all day, but it's not much worse than that yet.

Good news: my 7/2/2011 blood draw HCG results came back @ <2! AFP still in lab.

IMPORTANT: For me, consistent activity over the next 5 days is critical to getting through my cycle with as little fatigue and nausea as possible. During my first cycle, I came home every day and slept for 3 hours saying, "Chemo's tough, I should just sleep it off." It seemed to have made matters worse. If nothing else, it was *depressing* to continually move from my bed, to the car, to the chemo chair, etc. for an entire week.

In my second cycle I heeded these simple rules (self created but based on advice received from various nurses, docs, and friends) and it worked wonders for me! I saw my onco-pharmacist on day 5 of my cycle and he said that if he wasn't the one filling my chemo drug prescriptions, he wouldn't be able to tell I'd had 40 hours of treatment that week! More importantly I felt good, and I was living life. Make a plan and stick to it.

Raub's Rules:

1. Forced myself to get outside and do something for 30 min to an hour. Even went out for dinner with some friends on day 5!
2. Laughed, a LOT.
3. Didn't do any TC treatment research nor did I talk with my nurses about TC beyond what was necessary (checking for side effects etc).
4. My bed was for bedtime and the rest of the house was for the rest of my day.

Activity today:

I'll be going for a walk today once the sun calms down a little (my understanding is that as a chemo patient, I'm more at risk for sun burns). I'll try to do 30-40 minutes with breaks, but I think that'll be a stretch. It's a balance between not wearing myself on Day 1 while still moving.

Update: I'm roughly 7.5 hours post chemo. I went for an hour walk with roughly 20 minutes of breaks needed. Now that I'm back, I'm really starting to feel the nausea; not in an, "I'm about to puke," way, but rather a dull, very noticeable nausea. I'd assume it feels similar to sea sickness without the vomiting.

Update #2: I just took my nighttime pills and the bedtime Reglan gave me near immediate relief from my nausea! Thinking back I did take my hospital Reglan @ roughly 8:45 am vs the bedtime one @ 9:30 pm. My personal advice: Do not be off on your pills, even by an hour, seriously.

"Destroy What Destroys You"