Anticipation Days - Anxiety and Excitement!

Anticipation days are those just before treatment. I have treatment on Tuesdays so generally on Sunday night and Monday I start thinking about the treatment. I think we (chemo patients) all tend to have some sort of anxiety or feelings before going into the next round. I've learned to try and stay busy so my mind doesn't wander and think about something you can't control anyway!  Along with feeling some anxiety, I also feel eager to get another treatment checked off the list and that is exciting!

I was most nervous prior my very first treatment back in January for fear of the unknown. After that it got a little easier as I knew what to expect.  However, my last round of AC has my nerves in knots, and for good reason........that one put me in the hospital!

I was fairly nervous for my first round of Taxol (Paclitaxel), for fear of the unknown again! But, I managed through the infusion with no major side effects that. Apparently there are some hypersensitivity reactions that can occur from the toxicity of this drug. I think reading the list of side effects is what causes my anxiety!  Oh, and one not listed here is that it has been known to be fatal...yikes....I don't like that one either! Lucky for me I didn't have any issues with the first infusion and I am hoping the next few go equally as well. Below is the list of possible side effects I took off of drugs.com.

-These are what we monitored during my infusion:

• trouble breathing
• sudden swelling of your face, lips, tongue, throat, or trouble swallowing
• hives (raised bumps) or rash
• chest pains
• back pains

-These are some of the more common side effects

• severe stomach pain
• severe diarrhea

• low red blood cell count (anemia) feeling weak or tired
• hair loss
• numbness, tingling, or burning in your hands or feet (neuropathy)
• joint and muscle pain
• nausea and vomiting
• hypersensitivity reaction - trouble breathing; sudden swelling of your face, lips, tongue, throat, or trouble swallowing
• hives (raised bumps) or rash
• diarrhea
• mouth or lip sores (mucositis)
• infections - if you have a fever (temperature above 100.4°F) or other sign of infection
• swelling of your hands, face, or feet
• bleeding events
• irritation at the injection site
• low blood pressure (hypotension)

Now, I will have to say that Taxol has been easier in many ways compared to AC treatment, but it just sucks in a different way! I didn't have much of that "yucky, ewe, bleh" feeling like AC may cause. I didn't get mouth and throat sores, hallelujah! Of all the side effects from that list above I only had a few (highlighted and italicized). Yes, hair loss is one of them.  I was already bald but now I literally have about 8 eyelashes left! And my eyebrows are about 1/3rd of what they used to be.  Soon I'll be drawing them in!  Yesterday I wore fake eyelashes for a baldy photo shoot and they kept creeping down because there is nothing to rest them on! It was kind of funny because all I could see was a blackness trying to fall in my eyes all day!

HOWEVER, the pain that I started to felt two days after infusion of taxol was INTENSE. My bones were hurting all over and felt like some of them were fractured. My nerves were tingling and it felt like little fireworks going off in random spots all over my body. Then there were a few days where the pain from my sacrum and lower spine would make my knees buckle.  I can describe it as if you had a bunch of 9-volt (eh, and 12-volts too!) batteries floating around the inside of your body with exposed terminals! I hated the pain!!! But it lasted just 5 days and then all of a sudden was a lot easier to tolerate and manage. 

I have better pain meds now and I will make sure I have plenty on hand for this round. I have a good feeling that I will have this one under more control now that I know what to expect. I have also learned not to be afraid to take pain pills when you need them! There is no reason to be in pain and I am confident that pain pills won't become part of my daily life after cancer! I do think about and respect the fact that they can be addicting and you can count on my not be an addict. Not sure how that is even fun considering that pain pills cause constipation...no thanks!

My mind is definitely focused on chemo tomorrow and there's not much I can do about it. I try to keep myself busy all day. Rolling up in a ball watching bad daytime television will not help so it's not something you will find me doing. Right now I'm working on some things to tidy up the house then heading to work so I can get some things done there before taking some more time off to recuperate. 

Many survivors have told me to "just listen to your body". This is great advice and it's something I do! If my body can't get out of bed or is telling me to slow down then I do just that. I've learned to try hard not to let this get the best of me. We are allowed to have moments of crying and despair but I think it's best to really manage the emotions all the other times. I'm trying to manage my anxiety right now about chemo tomorrow and constantly remind my self after tomorrow I just have TWO MORE LEFT!!!

How To Love A Cancer Patient

Me on my 39th Birthday

Being a fighter is the only option and it's something that I feel is instinct to me. It's how I was raised and thankfully I found a husband that shares this same philosophy.  That doesn't mean it's easy and it doesn't mean that sometimes you just want to scream!

I feel so vulnerable and weak compared to my normal self and find it ironic when people comment on how strong I am through all this. I feel anything but strong and constantly think about how I can handle it better. My purpose of this post is to share some of the emotional challenges we face day to day.  And by using "we" I mean anyone who has gone through this emotional roller coaster caused by cancer. I want those who haven't gone through chemo to get a better understanding of what is really going on. Hopefully in doing this, you won't get offended or upset when someone you love bites your head off over something they would normally brush off or turn into a joke. I'm sure I make comments that would upset or offend at times....but I don't mean any harm!

The Challenge of Eating

Chemo changed my appetite and tastes of foods and drinks. This is frustrating because I know eating is important yet it sucked to eat! An example would be when my sister made dinner over the weekend. I gave her a crockpot chicken taco recipe and she went with it.  We got home, the house smelled like dinner, and I was looking forward to eating.  Then I tried to eat it.......and all I could think was that it tasted like catfood. Not that I ever ate catfood but I'm sure this is what it was like! Luckily she has thick skin and I don't think she was offended but I was just trying to describe what it was like to me. My taste buds were shot, I mean totally shot this time. I taste nothing and so it's hard to eat anything at this point. I'm sure dinner was great but I couldn't enjoy it and that is a bit frustrating to me. On top of the fact that I WAS HUNGRY and really can't put anything down! So, I tried chocolate ice cream and that was really gross.  Anyone who knows me also knows that I love chocolate so now we can confirm that I'm not making this stuff up! So if you know someone going through this and they make comments that may upset you about your food, just think of the entire picture of what is going on and it will make more sense.

Chemo Brain!

Keep in mind that a chemo patient is not only dealing with the ticking time bomb inside their body.....they are dealing with all the side effects of chemo and the drugs.  We may look ok on the outside but on the inside we don't feel 100%...EVER! We often don't make sense when we respond to your question or comment but it's probably because we are not processing it correctly with so much going on. I thought it was hard to remember things before, but now I can't remember anything! I recently lost my keys for 4 days and finally remembered they may have been left at the pharmacy.....and they were. My short term memory is only working part time these days.  This can be frustrating for others since they have to always remind me of recent events. Chemo Brain is FOR REAL! It makes us have weird interpretations of the simplest conversation and then this miscommunication may turn into an argument. Trust me, if that happens just drop the subject because there is no resolution to this. There will be another time to talk about it when the chemo brain is thinking more rationally!

Who Am I?

We are going to be a different person from what you are used to and this is caused by a lot of different factors. The chemo has side effects....a BUNCH of them! It does things to the body that are just awful. I feel like chemo should be used as a form of punishment over jail time, for real! I am pretty sure that if they said you do 8 rounds of chemo or some jail time that I would be incarcerated! Then we take more drugs along with the chemo such as steroids, pain meds, anxiety meds, nausea meds, and meds to help with the side effects of these meds.......no joke. In addition to all of this, the GI tract now has regularity issues so you have to take meds for that and then more meds for indigestion. I think the reason we get chemo brain forgetfulness is because we are always trying to figure out what meds to take at what time. Then when you need to leave the house you need to try and remember everything you need to take with you along like meds, lotion, Blistex, cuticle oil, eye drops, vasoline (great for nose dryness), etc. So we have a lot going on and it's something to consider when you know someone going through this. A moment doesn't go by when I'm not thinking about something related to my cancer. I  know already that I'm not the person I used to be and who knows what I'll be like after this is over. This is a life changer so don't be surprised if someone you know changes a little during or after cancer treatment. I got a card from my friend's little girls that said "If things didn't change then we wouldn't have butterflies", and that certainly says it all right there.

Having a Hot Flash:

I forgot to mention that some of us end up going through menopause as well. Although men don't go through menopause per say, I would think they may go through something similar as the chemo destroys cells in their body too. This definitely makes the hormones go whacky and cause some serious mood swings. You become a monster and when it happens to me I just get mad at myself for not having the control to stop myself from being a jerk! It's frustrating to be comfortable one moment and a minute later I feel like a turkey in an oven. This is why I like to keep my A/C low at all times.  That way I can adjust my temperature imbalances by throwing off blankets and taking my clothes off!

Can't Make Decisions

Another frustrating thing that happens is I become very indecisive at times. I may go through a few outfits or shoes before I can get dressed.  Then after I get in the car I am uncomfortable so I go back inside and change again! My skin gets sensitive and some clothes or jewelry that is normally fine to wear is not a good choice another day. It's already hard to get through a day and concentrate but if you're uncomfortable now that's another reason to become irritable! This indecisiveness may go along with Chemo Brain but I know it drives my husband nuts, however I just can't help it and I'm sure this isn't just me that gets this way.

Feeling lonely

Everyone I talk to that has gone through this agrees that sometimes the emotional rollercoaster is as tough as the side effects. Although so many have gone through this I still feel alone a lot of the time. Many times I prefer to be alone so I don't have to hear about issues or negativity. It took some time for me to get used to this feeling but I've come to accept it. I enjoy being around friends and family but there are times when I enjoy time alone too. Having cancer and fighting through chemo has taught me not to stress about things that don't matter. With that being said, sometimes it's hard for me to listen to someone gripe about something that can easily be handled without any stress or negativity.

Overwhelmed

I've talked to many others that have this feeling of being emotionally overwhelmed. Normally I was overwhelmed with the amount of work on my desk but now it's just a feeling that has the ability to control me. Inside I'll feel confused with emotions and then one little thing will set me off to start crying. Other times this feeling has caused me to have an anxiety attack which actually feels like a heart attack. This is something I still don't know how to handle but I try my best to keep myself together. When I feel this coming on I will let those around me know that I am overwhelmed with the situation because I just can't handle it! I'm honest about it and I will let them know if it continues I will say something I may regret. Removing myself from a situation that is causing anxiety has helped and it's something I think other patients experience.


These are just a few things I thought I would share.  Hopefully it helps give a better understanding of what we have going on emotionally. I was never an anxious person and this diagnosis changed that. From the moment I felt the lump 4 months ago my anxiety level started rising. This disease becomes a full time job on top your already established life and it's a test of your strength. I know this has changed me and hopefully in some ways it's for the better.

Anonymous, found on Pinterest

Chemo #5 - Beginning Taxol treatment

Here I am on my 5th round of chemo treatment (1st round of taxol)
 

Well I made it past my half way mark and I see the light at the end of this chemo tunnel!  I got through 4 rounds of AC treatment (barely!) and now moving on to 4 rounds of Taxol treatment.  They told me that my last round of AC treatment would nearly kill me and it really tried to but I came out the winner for that battle.

On the upside of being in the hospital for neutropenia, anemia, etc......I was able to have an extra week off from treatment. So I felt pretty good going into this round of Taxol. My blood counts were almost that of a healthy person! I am still thankful for the blood donors out there because they helped save my life. And here I am to finish off the final rounds of chemo to kill this stupid cancer!

My mom went with me for this treatment and I was concerned she may pass out from seeing needles and medical stuff.  But she faired ok and I was impressed.  My sister is the same way when it comes to blood and needles, not sure how we are all even related because it doesn't bother me! We got to Moffitt at about 11:30AM and didn't check out until 8:30PM!  It was a loooong day but they got behind on scheduling due to a horrible accident that had the interstate shut down. I could hear some patients complain about the wait but this happens and there's really nothing you can do about it. I always think "well at least I wasn't the one in the car accident".  Some things you just can't control so it is what it is.

This time I got a bed rather than just a recliner and it was so comfy. It was definitely appreciated because they really doped me up good for this round! After meeting with my PA she saw my anxiety and suggested I take an Ativan to relax more. Well, part of the anxiety was due to taking 10 Decadron (steroids) pills the night before.  So my eyes were wide open popping out of my head and I was on full alert! I don't care for the Decadron but they help with the possible side effects from Taxol infusion.  They also infused me with Benedryl to help with side effects that may occur during infusion. This is when I learned that I am now allergic to Benedryl...go figure! It causes RLS (restless leg syndrome) and so within about 10 minutes of being infused my legs started jumping and that was irritating. I was dopey because of the Ativan and Benedryl but my legs wanted to run a marathon I guess.  It was ridiculous but after about 3 hours it went away.  I had this happen while I was in the hospital too and now I know it was from taking the Benedryl than as well. Good thing they have an alternative for me to take next time! I was thrilled to get through this my first round of Taxol infusion without any of the awful side effects that sometimes occur.

Now it's day #2 after my Taxol and last night I started feeling the tingling in my hands and feet. I thought it would be a good idea to go shopping at the mall after work and that's when the side effects decided to kick in.  But it was worth it because I needed some new clothes! My legs were achy last night and some bone pain started in my legs and hips. Then my feet felt hot as well while I was trying to fall asleep. Today I just feel some tenderness in my hands and feet but I feel much better compared to how I felt on this day after AC treatment.

I still have to do the Neulasta shot to help boost my immune system like I did while on AC. This shot causes bone pain too but I've been able to manage it pretty good by taking 15mg of Mobic everyday. Fingers crossed that my pain doesn't get to be unbearable because I've heard some horror stories of how debilitating it can become.

OK so how do I get though all this? Cancer sucks.  It's ALWAYS on my mind.  My life has been consumed by cancer at this point and I didn't have time for it to begin with. There are things I want to go do and just can't because of stupid cancer. I'm not as productive with our business as I should be and that weighs on my shoulders. It's just hard to keep up with the daily things we all have to do in life! BUT, I get through it because I have support and people out there that truly care. It's like having your own cheerleading squad pushing you down to the finish line! Everyone going through this deserves to have the support I get and I hope no one ever goes through this alone. There are over 7 billion people on this planet.....NO ONE should ever have to be alone!




I had some bracelets made that inscribed with "Pamela Fights In Pink!".  I thought it would be fun to hand out to whoever wanted one. I ordered 100 and then they sent me an extra 200 so now here I am with 300 bracelets!! My sister brought some back up to Tally and the PR team at Zimmerman Agency posted this pic of them showing their support! I saw this scroll on my Facebook feed and immediately teared up and cried, it was so touching. It means a lot that they had to think about finding something pink to wear that day to honor me. Definitely made me feel special!




I have some blogs that I want to work on and just haven't had the time to put together. I tend to be upbeat but there are things I want to share that are not so positive too! If you are reading this and have a question or concern that I can elaborate on please leave a comment and I'll address it the best I can. I have unfinished blogs about ways to combat the side effects, dealing with cancer patients, and benefits to cancer. That last one sounds like a mistake but it is true, there are a few things I've taken away from this that I can consider it to be a benefit of my diagnosis.

One last thing I want to mention is that I signed up to do the Miles for Moffitt 5K run on May 10th. No, you won't see me running but I will get through it somehow! I pasted the link below if anyone is interested in joining the team or if you want to donate to the cause. All the money for this event goes towards cancer research at Moffitt. They have been so good to me and I feel like I need to do something in return!

Pamela Fay Fundraising Page - Pamela Fay's Personal Page for 2014 PNC Bank Miles for Moffitt at the University of South Florida



Chemo #4 - Put me in the hospital!

I told you in the last blog that I had a lot of anxiety going into this round of chemo and it was definitely justified based on the events that followed afterwards. I could probably write an entire book about the experience but I'll try to keep it as short as possible! I still can't stop thinking about what happened and how close I was to possibly losing this battle I'm fighting. Within the last few months my perspective on life has changed and now my eyes and heart are even more open than before.

I was treated with round 4 of AC (Adriamycin/Cyclophosphamide) on Tuesday and felt like a champ the next day or two. Then over the weekend I started to slow down and take advantage of the extra help I had from by dad and sister being in town. On Sunday I decided all of us (me, mom, dad, and sis) take our labs up to the shop to feed all our other dogs. So, we had 11 crazy dogs running around and they were having a total blast! Within a few minutes of being outside I felt lightheaded and a little short of breath but that doesn't stop me from being out there. Next thing I know my knees felt jiggly and tunnel vision set in so I got down on the ground to pull it together. Then I got myself in a dog kennel and out of the sun, none of which is a good idea when you don't have a good immune system. My dad got the car started and I got in it to try and catch my breath but it was tough. I had to watch my family try to gather up and feed a pack of maniac dogs and all I wanted to do was help! Because of my stubborn mind I did try to round up the dogs but quickly found out I just didn't have the energy. Soon enough they got me home and I was in bed the rest of the day and night. Even a trip to the bathroom was difficult and I planned on calling my doctor in the morning.  Looking back, I should have called the hospital and I know better now.

Me feeling like crap waiting to get transported to my room.

On Monday my doctor told me to come in and go straight to Blood Draw before seeing her. Well that turned into another interesting event! My sister drove and my dumbass decided it would be ok to walk from the valet to the Blood Draw area (Yes, Moffitt has only valet parking and it's awesome!).  I took a seat in there and just could not catch my breath. Finally I admitted I was in bad shape and my sister called for help. Within about 5 seconds I had 2 nurses tending to me and within less than a minute the rapid response team of about 10 was by my side! They were able to get me stable after awhile (not sure how long it took because I lost track of time at this point!) and brought me to the breast clinic to see my doctor. I knew at this point they were admitting me but I still wanted to see my medical team first. They told me I was neutropenic and that my neutrophils were 0.2 k/ul (normal range is 1.8 -7.8 k/ul). NOT GOOD!!!  Also not good was my hemoglobin which was 9.0 g/dL (normal range is 11.4-15.0 g/dL) so I'm anemic too. I was just a mess an my doc even told me I looked puny! She gave me a big hug, admitted me right away, and told me I was in good hands.

This Nurse Dan and me on my 3rd day there.

I was so glad that Sam was with me for all of this and can't express in words how lucky I am to have a sister like her!  In any situation we still find a way to make it fun and this was a bad situation! Then in walks my nurse, Dan. He was a character right from the beginning and made us laugh our asses off the next 3 days. But he was also a very kind nurse that knew his job well. As he was doing a blood draw from my arm for pathology he tells me he's legally blind in one eye! How can you not laugh at that?

Later that first night two techs show up with an X-ray machine and EKG unit. This caught me off guard because I thought they would wheel me down to get this done.  Apparently when you're critically neutropenic they do their best to keep you in the room. That's when I realized the severity of why I was there.

Monday was a long day and but when it came time to go to sleep I was wide awake.  I took my Ativan and it seemed as if David was the one who took it! This guy can sleep anywhere no matter how uncomfortable it is! My room had a folded spare bed but he opted to sleep in an uncomfortable recliner over making up the bed.

Me trying to fall asleep......!

Hubby that can sleep anywhere

I was for sure that on Tuesday morning my counts would naturally go back up. I mean, why wouldn't they?! For some reason I have this mindset that I can conquer anything on my own and this was just another example of doctors over reacting to the situation. Well, I was wrong....again! My neutrophil counts when down even more, they were now 0.07 k/ul and my hemoglobin went down to 7.3 g/L. How am I even blink my eyes at this point?! The medical team came by that morning and told me I needed a blood transfusion and that just blew my mind. The thought of pumping someone else's blood into my body just grossed me out. But based on my conversation with them it was pretty much my only option. Trying to recover from this without a transfusion was not recommended and so I listened to the risks and signed on the dotted line. So many of my friends and family offered to donate blood which I thought was so flattering but it doesn't work that way. There's a process it has to go through and I am so grateful to the donors out there. If there is ever a time where you feel helpless and want to do something for someone that is sick, just donate your blood! It doesn't cost anything and it saves lives. After receiving donated blood I have a new perspective on the significance of this type of donation.

My tower of meds, blood, etc.

Here I am receiving blood from a generous unknown donor

Me taking more pills, just call me pillhead. 

I received 2 units of blood and felt better within a few hours afterwards. Prior to my blood transfusion they started me on some serious antibiotics (Vancomycin and Cefepime) and antifungal (Micafungin) in case I had an infection going on. They took blood from my port and vein in my arm for cultures as well. Now, I'm a microbiologist so this is super interesting to me! On the other hand, I know too much so it freaks me out as well. They monitor cultures for 5 days and it was good to know that mine were negative because I surely didn't want to be septisemic (infection of the blood).

Wednesday morning I felt like a human being again! I wasn't ready to do a 5K but I was able to go to the bathroom without setting off my heart monitor to the nurse's station! Seriously, my visits to the bathroom would send me heart rate up to about 150 BPM! And it was only about 6 steps away from my bed. I finally had the energy to give myself a "wet wipe" bath. They give you a packet of these soap wipes and it was awesome because I felt disgusting. I actually appreciate being bald because it's one less thing to worry about in situations like this. In January I was so worried about losing my hair and now I'm glad it's gone! It's quicker to take a shower and get ready to go somewhere, plus it's not in my face all day. I guess it's one of those "blessings in disguise"!


Wednesday evening my mom was visiting and I was determined to get out of my room for once. The tech saw me trying to escape and quickly demanded I put on a mask. Between the duck mask, bald head, IV tubes, and blue gown I surely couldn't feel any sexier! I had my mom snap of picture of me with my rolling tower friend standing by my door covered with warning signs. Never in a million years would I have thought to be in a picture like this!

Just before my mom got there the woman in a nearby room starting moaning. I thought she was having a dream or something but then I started to hear the pain escalate in her moans. It got worse and worse and I just wanted to go in there and hug her. The nurses were there within seconds then a doctor was paged and at her side in less than a minute. I felt so helpless and just started crying because I knew she was in so much pain. I knew she was probably scared and confused. She was having a reaction to an anti-fungal that causes the muscles to cramp up so her hands, feet, arms, legs, fingers, and toes were all just one big charlie horse. Broke my heart and made me thankful that the only reaction I had by then was itchy ankles, calves, chest (and cleavage....odd) from the Cefepime. I did get another reaction later that night that caused my legs to twitch and ache. Come to find out the next morning my Potassium was low so they gave me a unit of Potassium to bring it back up. This may have been the cause of the discomfort I felt for about 2 hours before finally passing out from Ativan and Benedryl. Still, minor compared to what she went through.

Thursday I got the good news that my neutrophils were up to 1.07 k/ul and you would have thought I earned another degree because that's how I felt. I had so many fears running through my head while I was there and this progress made me stable enough to be discharged later in the day. There were many moments where I thought about my situation and I would wrap my head around the reality that I was in the hospital for something very serious. I know that patients die in there and I didn't want to be one of those stories. So when they told me about would be discharged I had this feeling of happiness and peace that I cannot put into words.

A friend I've been a Facebook "penpal" with messaged me that she had a doctor appointment that morning and would be at Moffitt. She is ahead of me in this fight and so helpful to me when I don't know what to expect next. Come to find out the appointment is the next week and chemo brain told her it was this Thursday! But this caused us to finally meet in person and we sat there talking for hours about cancer and life until I was finally able to leave, so she took me home too!

Having cancer sucks. Going through chemo sucks even more. But this diagnosis has changed my life in a way that nothing else would. I have a new outlook on life that would not have happened otherwise. I've met some amazing people and become a part of a sisterhood that cannot be explained unless you are a woman with cancer. As women we want to be independent and beautiful but cancer treatment makes these things difficult. It changes us mentally, physically, and physiologically so that we have to figure out our new self. It's a lot to process and I am so lucky to have the comradery of other fighters and survivors along with the best support network a cancer patient could have!

Smile, an Angel is in the room!

I've made my journey fairly public for a few reasons. I definitely don't do it for the attention because that actually makes me a bit uncomfortable! I don't do it to get flowers, cards, gifts, balloons, and hugs (although I greatly appreciate them all!!). I do it so others in this fight can reflect on how they felt during their experience. I also do it so those diagnosed after me may have find some help or answers in my experience. I'm a teacher at heart and I think this is just my way of educating.

Got to have flowers in my room after my counts went over 1.0!!

Just monkeying around with my new friend!

On a side note.......I have nothing but compliments about my stay at Moffitt. In my opinion this is the Ritz of hospitals and I am still amazed with how well I was treated. I never had to ask twice for anything and they never missed a beat. Kudos to the nurses, doctors, techs, housekeeping, transporters, meal servers, social workers, and patient advocates!!! I definitely have a quite a few compliment cards to fill out.