Chemo 101. Going down the rabbit hole...

Episode XIII: Real courage is...


Well, here goes. I had no idea what to expect!

About an hour before my chemotherapy treatment, I began my port prep at home. I cleaned and washed my port area since the stitches are still in. Then I used the numbing cream generously over the area where the port would be used (or where I guessed it would be used). Then I covered it with some Saran Wrap... yes the clinging clear kitchen product. It keeps the cream on the area and your clothes off of it.

We arrived at the Cancer Institute and it was the same routine. Check in - check. Lab for blood work - check... however, that was a bit different. Instead of the needle going into my arm to take the many vials of blood, my port was finally used. The nurse removed the clear Saran Wrap and wiped the area clean. Then she gathered new needles and tools. She had me take a deep breath and then... nothing. I felt nothing. The needle was in, the blood was flowing into the vials, but I really felt nothing. What a relief! Then I got the best news, that was the needle and tubing used for the chemo treatment. I was not going to have to have another stick... well, at least for that day!



Blood drawn, port in use and ready for chemo...

They covered up the port because others do not want to see a needle and tub hanging from my chest - gross. So, I went and waited outside the door to be called. Once called I got my blood pressure taken and weighed (yuck). Then I made my way to the physician assistant who was there to ask a few questions and prep me for my treatment.

While it was mostly the same-old talk, I did get a few prescriptions written for potential issues. Nausea - Zofran. Should have asked for Phenergran (did the next day). Pain - Morphine. And of course, I could call if anything else was needed.

I was walked to the treatment area. The back of the facility was designated for chemotherapy and short term treatment. They had rows of chairs and rooms with windows that overlooked very pretty gardens. The lazy-boy type chairs leaned back comfortably. There was a locker of warm towels for our use. There were volunteers who walked around with trays holding treats, water, coffee or magazines. If you wanted privacy, there was a curtain that could be pulled around you. Overall, there were some perks!

AC Chemotherapy - learn more... click here


So, I picked my chair (section 6) and it was time to start. I had a nurse, who was very nice, began my AC Chemo 101 lesson. There were handouts, information sheets, and booklets provided. My mom wanted to go along for the first treatment, so she got to hear some of the gory details of treatment and potential side effects.

Interesting facts:

I would be toxic for 48 hours. Kinda cool, in a weird way. That means things that would come out of my body would also be toxic for that time frame. So, I would have to refrain from playing with my urine, having sex, and use safety gloves to clean up anything of mine. Also, I found out my wash needed to be separate from everyone else in the house. And I would need to close the lid and flush twice after I peed or pooped. Like I said, kinda cool.

I am the female Toxic Avenger!


There were side effects. Really? Like I had no idea that nausea, diarrhea, vomiting, constipation, and general GI problems could occur. But there was more... hair loss, fingernail discoloration or loss, skin rashes, mouth sores, fatigue, red urine (and it was), as well as generally anything else could occur. And of course the AC can potentially cause Leukemia (blood cancer). Great to cure cancer, I could get more cancer - go figure!! My mother's eyes about popped out of her head.

Chemo Side Effects - learn more click here


Many more things were discussed, but it was time to get me pumped full of anti-nausea medicine, steroids, and more anti-nausea medicine...


Let's get this party started!



Now that I was good and prepped for the bad stuff, it was time for the bad stuff. First out of the chemo bag was Adriamycin or  the "Red Devil" named for it's appearance and affects. The crap was so powerful that it had to be pushed into my system via hand and with a saline drip. The nurse had to cover my body and herself before using it because if it touched your skin it was so dangerous it could potential require plastic surgery. And that was going inside my body?!?!


Round 1 - Adriamycin "The Red Devil"

Then I got to take in the Cytoxan casually for my second treatment. That chemo was done through the IV rather than by the nurse directly. While the side effects are similar, the way it was administered was different. Just a nice slow drip into the IV. My tummy did turn a few times, but I was unsure if it was a potential sign.

 
Round 2 - Cytoxan... almost over.

With a deep breath, the nurse removed the needle from the port and I was officially released to go. First round of chemo complete!!!

I spent the next few hours feeling alright, but with a slight queasy stomach. My taste for food dwindled to only the most bland of flavors. And eventually, my stomach got more upset. I started taking the Zofran, but it dissolved in my mouth and tasted bad. It only made the nausea a bit worse. Eventually, I got a bucket and began throwing up water and crackers, the only thing I could get down.

Me a bucket and a cracker.

Mostly, I hung out in bed and on the bathroom floor. It was not the worst stomach pain I have had, but it was not a fun night. It was moderately bad. Except for a brief period from 11 pm-1 am where I was pretty sure I felt down right BAD. Me with loud burps, vomiting water and cracker, and general stomach cramps. There was that feeling that you needed something to come out - either end - but something was better than cramping. However, I was unable to do either... well, most of the time. That combined with pure exhaustion made for a long night.

In my head....


It could have been worse. That was all that kept running through my mind. It really could have been worse. It was moderately bad. I believe that Phenergran would have worked better for me and I would ask for that prescription at my Chemo Shot visit tomorrow. My taste buds had definitely changed and I felt tired. Those feelings were going to linger throughout the treatment process. I kept saying to myself all night: "It could be worse. This isn't that bad. You can do it." I was like the little train that could, reinforcing myself to hang in there.



"But the stars that marked our starting fall away.
We must go deeper into greater pain,
for it is not permitted that we stay."
- Dante, Divine Comedy - Inferno, Canto VII


Episode Reference: Real courage is... "It's when you know you're licked before you begin 
but you begin anyway and you see it through no matter what.
You rarely win, but sometimes you do."
- Harper Lee's novel To Kill A Mockingbird

What can one tiny shot do?

Episode XIV: Closer to Done


Neulasta was going to lasta...


It was just one tiny shot, that packed a punch.... the ultimate White Blood Cell Booster!

So, I arrived for my appointment and quickly moved to Short Term Treatment - which really gets you in and out fast! I had choices, so I picked out my chair and wait on the nurse.


Found my chair... ready for my shot please.


The nurse walked over with what appeared to be a small shot and began to explain what I was about to get and why, as well as what to expect. Neulasta, aids in making white blood cells which helps prevent infections while having chemotherapy. So, what was I to expect? Bone pain - check. Bone pain - check. And more bone pain - check. Ok, there were a few more side effects, but I figure at that point who cares!

Neulasta Shot - Learn More click here


So, I gave her a nice cushy part of my left-side tummy and without any pain, I got my tiny but powerful shot...

Neulasta shot.


So, the shot goes deep into the bone marrow and stimulated white blood cell growth. It makes them grow at a more rapid rate to help counter-effect the chemotherapy treatment I had the day before. I was glad the nurse explained that it goes into all the bones. While the larger bones tend to produce more pain, larger bones include the jaw, head, neck, shoulder, chest, back, legs, and essentially it can hurt anywhere. Below is a picture from the Neulasta video showing the effects of white blood cell growth... and it looks like it could possible hurt about everywhere....


Stimulating white blood cells all over in the bones... ok, that might hurt!


As a bonus, the nurse did look at my skin around the port and noticed that my skin was irritated from the bandage glue from the port surgery which had now created an irritation with anything else I put on it. She advised me to leave all bandages off and just let it air dry and heal up.


Seems that the only way to get rid of the bandage rash is to leave the bandages off.


Now, did the shot cause me pain? Of course it did. It didn't happen instantly, but it did happen. Apparently each time I get the shot the effects can be in different places. For me, that time, it started with my head, neck, shoulders area. Even the gentlest touch was wrenching. My hair moving hurt. The pillow caused me pain. My jaw began to hurt to eat. The chest and shoulders made breathing more difficult. Then it worked its way into my hips. Which created more pain when walking, but also sleeping. I would get in one position and begin to hurt, so I would roll to the other side. Then it would hurt and I would try my back. Overall, I rotated like a rotisserie chicken in my sleep like crazy.

It still could have been worse...

I give. My bones hurt.

In my head....


Ouch! That should be all I say, but it does eventually get better.A tip for those who hurt, take some Phenergren and sleep through as much of the pain as you can, it worked way better than pain medicine for me. I got the shot on Wednesday and by Saturday I was able to tolerate a shower and feel human. It took a good solid week to walk without major discomfort. But, I walked anyway... slow and steady. Keep on keeping on!


"He fought because he actually felt safer fighting than running."
- Richard Adams, Watership Down



Episode Reference: Closer to Fine - Indigo Girls song

Week 1 Update... let the AC begin!

Episode XV: Times like these


It was one week from my very first chemotherapy treatment. I have made it and am doing well. I am not nauseous. I am in only moderate discomfort. I am only moderately fatigued. Overall, a very tolerable and manageable week (with some help those first few days). So, here's just a general update:

1. Less insanely purple. The crazy huge bruise on my left arm ever since the Nuclear Stress Test is starting to get better...




2. Bonus! Apparently, I was allergic to the glue on the bandage tape used from my port surgery. My port stitches got removed and the bandage rash has almost gone away...




3. Sweet! I still have my fingernails and hair on my head and other places...




4. Bone Pain Go Away Come Again Another Day! The Neulasta shot made my bones produce insane amounts of white blood cells, so it caused intense pain for around a week. Seems like my bones and muscles are still sore, but it could be worse. The general bone pain was slowly going away, but when I walk it can act up. Also, pain will occur on the side I sleep on. Lots of rotating at night...





5. I got fire tongue!! My tongue burns like it was on fire, so I get to endure special "Magic Mouthwash" to help cure it. The mouthwash causes an immediate heat reaction to the mouth, hyping the fire feeling up, until after about 15 minutes it becomes numb. I haven't gotten mouth sores so, I guess it was a good thing. However, my tongue burns, even more with food and water and does not fully cool off...

"Come on baby light my fire" 
- The Doors lyrics from Light My Fire song Light My Fire



6. Speaking of my mouth! My taste buds were pretty much obliterated. There was always an odd taste in my mouth and it definitely affected the ways food tasted. Mostly, I wanted bland food which tend to be carbs - argh - ruining my "cancer diet" plan. Plus, the doctors don't want me to lose weight, what were they thinking - it was the one bonus to this thing...




7. Dang exercise! Why do I still want to be healthy? I have lost a lot of my energy and ability to exercise the way I like. My mind was making commitments my body could not keep! It was odd because my mind still wanted to go, but my body just couldn't. So, I kept after my pathetic, lousy 3 block walk down the neighborhood; 6 blocks including the return trip. However, it still remains my nemesis and a daily reminder of life and pain...




8. Man Brain! Not to insult my male friends and family, but I have gotten turned into a slow thinker. I called it "pregnancy brain", but my husband said I now know what it feels like to be a guy. I probably process conversations and think of things I should have said or done around a couple of hours after it happens. I am an easy target for two children!!! Either way, I have gotten mentally slower especially when tired (which tends to be a lot)...



In my head...


Overall, I cannot complain too much. That first week could have been so much worse. While there were moments, I have found that I am stronger than I believed. A positive outlook can be light in the darkest of places. Hanging on to humor and love.


"But it's no use going back to yesterday, because I was a different person then." 
- Alice from Lewis Carroll's Alice in Wonderland


Episode Reference: Times Like These, Foo Fighter song 

Chemo #2, What will you do?

Episode XVI:  Here it goes again...



What can I say? Another day, another chemo. I went through the general process: check-in and blood work. However, today I was going to meet with the Oncologist to go over my first chemotherapy treatment. We met and discussed the general issues that I had after the first treatment. Since I had some nausea, he prescribed a patch for me to wear prior to chemo treatments. We were going to have to get those!!

Even thought I had already got the MRI results from the Breast Surgeon, now we got to discuss them too. The lump was larger than we initially thought, now it was more like a plum or small orange. Also, multiple lymph nodes looked questionable. Meaning the cancer may have made its way out of my breast. However, we are being aggressive and the current treatment plan we are taking would be the same; either way kill the Cancer.

My mass was larger than we thought, my plum-lump!


Then we discussed that I probably should get some genetic testing and meet with the Genetic Oncologist before my next chemo treatment. At that point we would discuss if my insurance covered any of the $3000 test... WOW nothing about Cancer was cheap! Make a mental note to be prepared to freak out next visit!

Once we were done with the doctor talk, I was off to schedule all my next appointments and my hubby was off to get my anti-nausea patch. While I finished up slightly before him, we got started on Chemo Round 2.


Get me good and prepped with anti-nausea medicine!

The treatment was similar to last time. I sat in my chair and began my treatment. I had my hubby cover me in warm blankets and he got a chance to experience the chemo for the first time.


My Chemo-Buddy and Me! - My Buddy Commercial


Of course, we made our way to the good stuff... the really toxic stuff. I always get teased about my happiness about getting chemo. And to be honest, I am happy to be killing the cancer - so, I will smile through the treatment. The side effects suck, but I can't help to be happy about being one treatment closer towards the end.


Me getting the first of two doses of Red Devil.

For those who have a sensitive stomach or get grossed out easily... skip the next picture. You were warned. With all the medicines they pump into me, I have to pee throughout treatment. And it amazes me how quickly the stuff got into my system. I guess going straight into my heart via the port will do that, but it still amazed me. I had to take a picture, I know I am gross, but immediately after the Red Devil treatment I walked to the bathroom and my pee began to turn red. Faintly, because it was less than 5 minutes from treatment, but the beginning stages of red. And yes, the next picture you can see or scroll past was of that pee. And yes, I did take my phone into the bathroom with the intent on taking a picture of my pee.


Yeah, I had to go there! My pee right only minutes after the Red Devil!


I sent the hubby on to work during the next chemo round, because I do nothing but sit there for an hour. Go make me my money, honey! Of course I can't just let him walk out there without doing something, so I loudly joked how he was leaving me. I think what I really said was, "I can't believe your leaving your sick, cancerous... (very fake coughing) wife." The girls across from me laughed. He rolled his eyes. He knew what he married when he married me! Once he left, I began to meet two wonderful ladies. We all had different forms of cancer, in different stages, and different treatments, but we shared the general complaints, concern, and support.

Finally, I got to leave treatment and headed home. I still got a little sick, but I didn't vomit. Bonus! I spent about 45 minutes at 9 pm holding my bucket and moaning. But, it led to nothing. So, overall the chemo was better than last time. While I still had a rolly-tummy, I felt that I handled the general nausea better. The nausea patch, Sancuso, helped. I still felt that horrible don't smell food, don't think food, but I could sort of eat food. Of course the fatigue was tiring, but expected. So overall, I was pleasantly surprised,

In my head...

Knowing what to expect made the experience a bit easier. While each time can be different and what will happen unique to each person, having something to base it on made it less intimidating. Plus, I had an idea that I was not going to eat well for a week, my taste buds would be shot, and in general I would feel crappy. All true!

I also knew how to handle my toxic self by planning ahead (washing schedule and gloves in the bathroom). Experience helped me think ahead and learn what I would feel like doing and what I could really handle with or without help.


"A resolution to avoid an evil is seldom framed till the evil is so far advanced 
as to make avoidance impossible"
- Thomas Hardy, Far from the Madding Crowd


Episode Reference: Here It Goes Again, OK Go song

That darn shot!!

Episode XVII: No Coward Soul Is Mine


So, I made it through last night with minimal chemo side-effect issues. Now it was time to take the second Neulasta shot. At least, I had some idea what to expect...

Not thrilled, but ready...


Since my family has been giving me a hard time saying I look "too happy" when having chemo I made sure to take a few pictures that expressed my super-excited attitude. But in reality, I know I am killing cancer so I am happy to get the treatment. It doesn't mean I enjoy it though!


  
Look at me! I am crazy excited, think...
Happy Happy Joy Joy, Ren & Stimpy song 


The  shot was once again quickly given. I think my total time at the Cancer Center was maybe 10 minutes. That treatment was fast. Of course, it does pack a punch. By the time I got home, it was already in affect. When I flung my leg out of the car I knew it was working, because there was a slight tinge in my right hip, femur, and knee. I know what was ahead of me.

Because I had an early appointment time and I am half-idiotic right now, I had forgotten to take my morning Zyrtec. So, I immediately took that when I got home. It does seem to make a difference. 2 pills, one in the morning and one at night make a huge difference in pain relief. Take the Zyrtec!

So, by that evening the pain had hit and it hit pretty hard. Like before the bones felt brittle and if anyone thought of touching my shoulders up, I might have taken a swing at them... well, if I could have lifted my arm. The pain was from my knees up, in each bone, so I was feeling the Neulasta love.


The pain was starting to invade me.


Of course, when it invades your neck and head space it was especially difficult. My jawbone felt like glass, which made eating an ordeal. I could eat 3 beans at a time and chew them very slowly, 4 at a time was much. I could eat 2 macaroni noodles at one time. A small bowl of these two things took almost 2 hours to chew and eat. My neck was again sore, so swallowing hurt as well. Even pudding felt like an ordeal.

At 2 am I woke up with twisted locked fingers and an overwhelming since of discomfort. From my knee to the top of my head I hurt. The bones felt of glass. My hands were numb, but in pain. My neck felt stiff. It took all of my energy and strength to move my body in any direction, but I had to move. The pain of laying on my side was unbearable. I began grabbing the pills from the side table deciding that it was time to take something (Morphine - which didn't cut the pain, Phenegren - which barely helped with the nausea, & Lorazepam - which did eventually make me sleep). I learned it took at least 45 minutes before anything began to work... and time can go slowly when you hurt. I sat up in bed with only a few tears telling myself that "It could be worse"... and "This sucks".

So by the second day the pain was bad and I was ready to just sleep through it if possible. It was my 2nd day out from chemo treatment, so I was not toxic anymore, and I needed all my sheets and clothes to be washed. I opted to shower, not because I care how nasty I am at that point, but because I wanted to get everything toxic out of the room - including my dirty self. The water felt like bullets on my back and head. My hair was falling out in clumps. It was so bad that I couldn't even brush my hair after getting out of the shower due to the amount of hair departing my body and the mess it was making. I really wanted to cut my hair off, but the sensitivity of my head would make it impossible. So, I let my hair remain piles of wadded mess and decided I would forget about it until the weekend. Plus, I promised the kids they could do it.


Ok, I hurt... come on drugs kick in!


I drugged myself with all the doctor prescribed goodies. My  temperature was rising to 99.9, and the doctor/hospital worry number is 100.4. I was closer than I would like. Tylenol began to bring it back down. However, that up-down temperature thing would carry me into the third day too.

By the third day, I was better but still not great. I woke up to a pillow covered in hair, like a crazy shedding pet had slept on it. I attempted to run my fingers through the wadded mess that was my hair, and oops I shouldn't do that...

Falling out in clumps


My temperature was still fluctuating and the area below my right ear and neck was swollen and sore. Crazy sore. The stiff neck was always an issue for me so far, but the insane pain to the touch on a non-bone was not. So, I called in to the nurse line and it sounded like I was getting an infection. Yeah! Antibiotics were now necessary - however, better to be safe than sorry. They were huge pills - crazy big. The pain had decreased some, which was always good. I managed to eat something without my jaw hurting intensely. Each day was bring me one more day out of the pain, but I remained fatigued and sore because of that cold.

In my head...


Lets be honest, that sucked. The pain was bad, my hair was worse! And that cold was horrible! So, I am down another shot and made it! The bone pain could have been worse - my calves didn't get hit!


Either

"In my stars I am above thee; but be not afraid of greatness: some are born great, 
some achieve greatness, and some have greatness thrust upon 'em."
- Shakespeare, Twelfth Night

or

"Some mean are born mediocre, some men achieve mediocrity, 
and some men have mediocrity thrust upon them."
- Joseph Heller, Catch 22 


Episode Reference: No Coward Soul Is Mine, Emily Bronte