Chemotherapy Phase II Begins--The Next Twelve Weeks...........

5/5/2013--Sunday--Day 204--A Whole New World

Last week, I received a phone call from Renee Davis, a co-worker, asking if I would speak at Safford's Relay for Life event scheduled for May 3rd.  She wanted me to introduce myself, what type of cancer I have, share what type of support system I have, and what motivates me to get through this.  The speech would be the day after my first chemo of phase II of this journey.  Though I was worried about the effects the new drugs might have on me, I didn't hesitate to accept the invitation--something inside just told me to do it.  She also asked me to attend the Survivors' dinner that Friday, the week before the event, which I agreed to do as well.

Friday, April 26th was the Survivors' Dinner, which was the same day I wrote about in my last blog when I had trouble making it through the work day.  Despite having a rough day, Greg and I attended the dinner.  Our children, Preston and Brooklyn, have both participated in past Relay for Life events, but Greg and I have never been a part of it, so we had no idea what to expect.  Walking into the Survivors' Dinner was a new experience that brought many different feelings.  The first thing I noticed was the same thing that bothers me when I go into the MD Anderson Cancer Center--I'm pretty much the youngest one there.  Most of the other people my age at the center, as well as that night at the dinner, are caregivers attending with their parents who are being treated or, at the dinner, were the survivors.  The second thing I noticed was I was the only person without hair.  I guess the others have made it through their journey already and are truly survivors, whereas it felt like I was the only one there still in the middle of my fight.

As we sat through the dinner, I realized there was a whole other world of people in Safford that existed that I didn't really know, yet I was suddenly part of this world due to this horrible disease.  We all shared that struggle in common, which now made us a group, whether we knew each other or not.  One of my former students, Lisa, ran the dinner, and other former students and colleagues were also volunteers all there to honor and serve the survivors.  We received purple T-shirts to wear to the relay as well as luminaria bags to decorate for the race. I began to hit my wall of exhaustion so Greg took me home shortly after the meal.  I didn't know exactly what I was going to say at the relay, but I had a week to think about what information I could share that would truly make a difference for people to hear.

Prior to leaving for Mesa for my first chemo of part II, Monday through Wednesday were high stress days for me.  I was working on finalizing a very important grant for school which we had been preparing for months.  My feet had become worse than they had been in many weeks, and both Monday and Tuesday I had worked late finalizing the grant.  By Wednesday, the grant deadline, it was in its final stage and all I needed to do was upload some changes and submit it.  When technical glitches arose with the online application, I became more overwhelmed than usual.  While I called the grant support help-line and I knew the issues would be resolved, I found myself stressing much more than I usually would be.  I hated that.  It's not like me.  It was another reminder of the additional stress cancer can have on your life, even in a place where you are usually calm and collected.  But it all worked out and the grant was submitted by 2PM, hours before it was due and by 4 we were heading to Mesa to spend the night before our early 7:30AM appointments started the next day.

Once we arrived in town, we spent the evening visiting with our friends, Paul and Diane, delivering a bon voyage gift for their travels to Ireland, a trip we strongly considered going on with them before my diagnosis last fall.  They were great company and provided a good way to relax away the stress of the week before facing the next day.  We returned to Preston's early to get a good night's sleep.

Chemo 1 Part II:  The morning started with early labs.  A new girl, Traci, accessed my port on the first shot since Heather wasn't there, so that was a relief.  From there we went to the 2nd floor to meet with Dr. C.  She explained the new drug regiment along with some side effects to watch for and the risks that come with the new drugs.  We were done with Taxol, thank goodness, so hopefully the numbness in my feet with subside soon.  But more importantly, hopefully the side effects of these new drugs won't be worse than numb feet.  It was scary hearing about everything, but here were the basics on risks:  1) There is a 1% chance these drugs can affect my heart, which is why they did the EKG prior to starting any chemo.  2) These drugs can cause liver damage, so it is important to drink A LOT of water to keep the liver flushed. 3) These drugs have a 1% chance of causing leukemia.  At that point I asked Dr. C. what other options we had and were there choices of drugs with treating breast cancer.  She explained, besides the Taxol, two of the three new drugs were the most common and standard drug regiments given with breast cancer patients by most all breast oncologists.  The third drug was a standard for MD Anderson as their research showed the three together, along with the regiment of Taxol I had already received, had the most positive results in fighting cancer.  That is when you have to have faith in your doctor and believe she is doing the very best treatment for your case.

She then explained the side effects of the new three drugs.  There can be nausea for the first 3-5 days, but they will give me medicines to control that.  Starting on day 7, I will be most susceptible to infections because my blood counts are most likely to drop during the second week.  Use precautions by staying away from sick people and crowds, be careful about eating fresh fruits or vegetables at a restaurant because they may not have been cleaned thoroughly, and watch that my temperature never hits 100.5, or higher as that may indicate I have infections and my body may need IV antibiotics to fight it since my blood count may be too low.  The final week is supposed to be my blood counts recovering and rebuilding so I can start the regiment again.  She also gave me a prescription to have my blood count taken here in Safford before making the trip to Mesa for the next dose.  If my blood counts drop low, they call that becoming neutropenic, which means you have to take even more precautions to not be exposed to germs and they may have to do infusions before I can start the next round or treatment.  Following Dr. C, Mike, the pharmacist came in, just like he had done when we first start the Taxol, but this time he had an apprentice who was practicing telling me all of the side effects of each drug.  I stumped him with a few questions, which Mike immediately jumped in to clarify.  Basically they covered what Dr. C had already said, but with a little more detail.

Before I get started on the infusion series, let me take a minute to explain how chemotherapy works.  Chemotherapy drugs basically damage cells by keeping them from dividing, thereby stopping cancerous cells from growing.  If cells can't divide, they die.  Normal cells control how quickly they divide and stop dividing when they run into other like cells; cancerous cells have lost the ability to stop themselves from continuing to divide, so they divide rapidly and out of control, not stopping, therefore creating clusters of cancerous cells or tumors.  Chemotherapy drugs damage RNA and DNA that tell cells how to copy themselves.   Side effects are caused because chemotherapy drugs kill rapidly dividing cells, both good and bad.  The good ones will grow back, but the hope is the chemotherapy drugs kill all the bad cells by preventing them from dividing and they can't grow back.  Normal cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowels, and the hair follicles.  Losing the good cells in these areas can result in low blood counts, mouth sores, nausea, diarrhea, hair loss and other common side effects.

So, from our appointment with Dr. C, we headed to the 3rd floor for infusion.  Cheryl was my nurse, and together we decided to try to run the meds as prescribed and watch for reaction.  There were so many now, and they weren't known to be as harsh going in as the Taxol.  First, there were now three pre-meds before the chemo.  We started with Dexamethasone, the steroid drip they started me on when I first started the Taxol.  This helps stop allergic reactions and helps with the nausea.  That was a 15 minute drip.  At the same time, I received Zofran for nausea, also a 15 minute drip.  Both were accompanied by Emend, a 20 minute drip also used for nausea.  My IV pole and tubes coming down now looked like a juggled mess.  All three pre-meds ran at the same time, but once they were finished, there was a 30 minute wait before starting the three chemo drugs, which have to be run separately.  The pre-meds went like clockwork with no problems whatsoever.  After our 30 minute wait period, we started the first new chemo drug called 5-FU, or Fluorouracil.  The most common (occurring in more than 30% of patients) side effects of 5-FU include diarrhea (I have lots of experience with that from the Taxol), nausea, mouth sores, poor appetite and taste changes--metallic taste, watery eyes, sensitivity to light, and low blood counts.  The 5-FU finished in 15 minutes and we were on to drug number 2, Adriamycin, or Doxorubicin.  Adriamycin is a red drug (some call it the Red Devil) that must stayed covered to avoid light so they bring it out covered in a green plastic bag which hangs over the IV drip bag as it goes in.  It only takes 15 minutes to run as well, but there are some additional dangers and side effects with this drug.  First, you are limited on the amount of Adriamycin you can receive in a lifetime.  Second, this is the drug that can damage your heart, though it is rare.  This is also the drug than raises your risk of developing leukemia, even years later.  The other different thing about this drug is there are early side effects, peeing red, which I did, as well as the others mentioned above, and later side effects, that happen within two weeks, which are the lower blood counts.  The infusion went without incident and we were on to the third and final drug, Cytoxan, or Cyclophosphamide, which required a full one hour to infuse.  Cytoxan's major side effects are what have already been mentioned, but mostly low blood counts with your white and red blood cells and platelets decreasing.  This drug also carries a slight risk of developing leukemia.

So that was it.  Between the pre-meds and the chemotherapy meds, I had an IV pole full of infusion tubes running all over the place.  Though we ran everything at normal speeds, just all of the changing and hooking up takes additional time.  By the time everything took place, we were still behind schedule and I missed my 1:30 appointment with Dr. Matt and was late to my 3 o'clock sleeve-fitting appointment.  It had definitely been a long day, but I was feeling pretty good, better than when I receive the Taxol.

We quickly drove to our next appointment to be fitted for a sleeve and glove for my right arm, which had started to experience some slight swelling.  I'm so scared of developing lymphedema that I want to make sure I have a sleeve.  The technician fitting me explained that I should be wearing the sleeve when traveling, especially anytime my ears are going to pop, which they always do in the Superior Mountains between Mesa and Safford.  She put the sleeve and glove on and I wanted to cry.  I suddenly looked like a burn victim.  Here was another sign I was never really going to be my normal self again.  It was tough handling it so I was glad it didn't take long.  Preston had met up with us and he and Greg assured me it was hardly noticeable, which was nice, but still hard to take.  By the time we made a quick stop at Costco, I was done.  I still felt okay, but knew we needed to head home.  By Globe, I was peeing red already and by the time we were home, I was feeling a little woozy.  It was going to be an whole new experience on these drugs.

Starting Friday morning, for the first time ever, I had to take Dexamethasone twice a day for the first three days following infusion.  Mike, the pharmacist, said it would continue to help with reactions, but would also give me energy and may keep me awake.  I worked Friday as normal and headed out to Relay for Life with Greg about 5 PM.

RELAY FOR LIFE: Once again, we weren't sure what to expect when we first arrived.  There were tents set up on the inside and outside of a make-shift track at the fairgrounds.  I saw Lisa, my former student, who seemed to be in charge of the survivors.  She signed me in, gave me my packet and then Greg and I wandered around looking while waiting for the official beginning and the Survivors' Lap to start the race.  We had met up with Cindy Stahl, a friend and cancer survivor, as well as Carolyn Hopkins, also a survivor, so luckily I didn't feel quite as alone.  I was still the only bald one out there.  All of these other people were truly survivors and not in the middle of their fight like I was.  As the Survivor's Lap began, I was shocked to find myself fighting tears within the first quarter of the track.  What the heck!  Why was I crying?  It was actually way more emotional than I ever would have expected.  All of these people were clapping to honor us as we circled the track and all I could do was think about how much I didn't want to be there.  I didn't want to be a survivor, I didn't want to have cancer, and walking that first lap brought all of the realization of my world right into my face.  I know that sounds crazy, but you sometimes just get so involved in doing all the treatments, doing all the things you're supposed to be doing, that you don't face the idea that YOU HAVE CANCER until you come face-to-face with the fact in a moment like that.  After the first lap, care-givers joined the survivors so Greg and I walked hand-in-hand around the track one more time as I fought tears again.

Following the laps, we hung around walking some for the next hour and a half before heading home for a little while to rest before I gave my speech at the lighting of the luminarias.  I needed to take my steroid before it got too late and I was tired and wanted to put my feet up.  They were still very numb and Mike said they might remain numb from the Taxol for several more weeks.  By 9 we headed back out.  As we were waiting by the stage for the speeches to start, I became aware that during the speeches and the lighting of the luminarias, everyone stopped walking and came to the stage to listen.  That was suddenly scary.  There were three of us who were going to talk and I was going first, followed by another survivor then a care-giver of a survivor.  As I went on stage, I said a quick prayer for help in being inspirational, and then I started and delivered the following message.  Greg taped in and uploaded it to Facebook if you want to see it live (though I messed up a bit and ad-libbed a lot).

RELAY FOR LIFE SPEECH:  

Hi, my name is Susan Lindsey and I’m in the middle of being treated for Stage 3 Breast Cancer. My diagnosis was in November when they thought I had what they called DCIS--”It’s a simple pre-cancer breast cancer,” they told me. “Easy to treat and nothing to worry about.”

At the end of November during my lumpectomy, instead of DCIS, they found a 4 CM invasive tumor. That was followed by discovering I also had tumors in my sentinel and axillary lymph nodes, one in my mammary lymph node and most surprisingly a 12 CM tumor in my abdomen which would also require a full hysterectomy

So, 3 surgeries in 5 weeks later, my life had changed a lot. It pretty much felt like an asteroid fell from the sky and hit me on the head. Where did my life go?
Tonight I’ve been asked to share with you what my support system has been and what you can do to help support cancer patients.

My first advice to friends and family of cancer patients is to have the courage to ask, even if you don’t know if they know that you know. Awkwardness is so hard and if you don’t ask, they’ll never really know that you care.

When I was first diagnosed, my husband, Greg and I, discussed how we were going to do this, what kind of support systems did we have and what were we going to need. I work for a school system, and the most important thing for me was I didn’t want awkwardness. I didn’t want to run into people who didn’t know if I knew they knew, so they were afraid to say anything to me. So avoid the awkwardness and ask how we are doing and let us know you care. 

My second piece of advice--encourage cancer patients to find an easy way to communicate updates to everyone at once whether it is through email or blog or social media. If you're a family member, volunteer to help distribute the information. We as cancer patients have so much more to focus on.

I decided to start a public blog about my cancer. That has been the biggest help of all. I put all of my update information on the blog and then I ask my supporters to read it to find out the details so I don’t have to tell the details over and over again. That would be so depressing. Instead, after they read the details, I canI talk to people more about the support and love.

My third piece of advice, learn as much as you can about the disease. I am an educator and a constant teacher. I’ve heard from the readers of my blog that they have learned so much about cancer that they never knew. They have had parents, siblings, friends who have suffered and even died from the disease, but they never had the understanding of the personal details of the disease or the emotions a cancer patient faces. You know we face chemo, but what is it and how does it work? What effects does it have on the body? As an educator, I’m really glad I have found a way to use my cancer to teach. People should know--the good, the bad and the ugly. 

My last piece of advice is remember the backside of the marathon. When we are first diagnosed, when we are at the starting line of this race, everyone is there showing support and seeing what they can do. When we first start chemo, when we have surgeries, during all the important milestones, supporters are usually right there. But remember us during those long periods of treatment week after week. This is what I call the back side of the marathon where we feel like we are running alone. We know we have supporters, waiting at the finish line, but the back side of the race is the hardest part to stay positive. Check in on us during the backside of the marathon. Remind us you’re still thinking about us. This is a long journey. 

I will end by sharing with you what motivates me to keep fighting, besides all my wonderful supporters. When I was first diagnosed, I adopted a phrase to help me get through this. “Don’t Waste Your Cancer.” At first, that can almost sound offensive, but for me, it was motivational. I didn’t have a choice whether I wanted to take this journey, but I do have a choice as to what I want to do with it. I don’t know why I got cancer, and it doesn’t really matter. It is what it is. What I try to focus on is what positive things I can now do with it since it is part of my life. I don’t have all those answers because I’m still in the middle of my fight and treatment. But I keep telling myself over and over--”Don’t Waste Your Cancer!” Make something good out of it. And that has kept me positive and motivated to keep going. 

Thank you for being here tonight and for caring. Cancer is the hardest thing I’ve ever faced in my life, but knowing other people care, people you don’t even know personally--well, that really helps. Thank you.

So that was it.  It was done.  Despite the mess ups, hopefully I shared an inspiring message that will help others.  I was glad I did it, but I was also ready to go home.  After the other two finished their speeches, we exited the stage, stayed to watch a slide show, then we went home.

New Side Effects of the New Drugs:  Friday had been a busy day, but Saturday I was curious about how the weekend was going to go.  The first two things I noticed was feeling a bit dazed or confused, enough so that I didn't feel comfortable enough to drive.  The second thing was I realized the chills I had been feeling since January must have been from the Taxol, but I was cold no more.  In fact, the third thing I experienced was the strangest thing so far (other than peeing red of course).  I get what I would call red flashes, not be be confused with hot flashes.  Suddenly my neck and then my face turn bright red and I feel a burning from the inside out.  I don't really break into a sweat, though there is a small glistening on my bald head, but it truly feels like I am on fire inside burning through my skin to the outside.  It is short lived, but you can actually see the bright red of my neck and face.  This ought to be fun at work.  Goodness gracious--I'll scare people to death!

Saturday I had small spurts of energy as we did a few project around the house, our biggest accomplishment being a huge grocery shopping trip, something we desperately needed to do.  We also did some yard work and actually swam for the first time this season.  That was actually my first time submerging into a body of water since before my surgeries in January.  The water temperature was 84 degrees and felt nice.  I knew my chilly period was over when I could get in and out of the pool without freezing, but swimming with numb feet was quite a trip.  Sunday was pretty much the same but I took my steroid later as we both slept in.  I found quite a bit more energy, but I was very nauseated.  All I could get down was some toast.  I cleaned and reorganized some kitchen drawers and finally took a nausea pill. By early evening I was able to eat some soup but quickly noticed it had not taste.  We finished the evening laying under the stars looking for satellites.

Tomorrow will be my first day without the steroids so we'll see how the work day goes.  Starting on Thursday, my blood counts are supposed to be more affected as well.  From here on out, these next three weeks we will be learning yet another Whole New World!