I have never been into gambling or playing the lottery. The odds are so slim and I felt that money was just being thrown away. Right now though, I am thinking I should start playing the lottery with the way my life has been going during my cancer diagnosis.

Prior to starting my treatment, I meet with my doctors and they went through the “possible” side effects. When the doctors go through these side effects, they often tell me “we have to just let you know about these potential side effects, but the chances of them happening are not likely.” In the back of my mind, those words mean nothing because I feel I am the outlier in all of this medical data. Someone has to be! I often laugh and tell the doctors they have to tell patients these possible side effects because of patients like me. Doctors shrug me off, until it actually happens!

So here I am, with these potential chemo side effects, already happening. The biggest life altering side effect from the chemo was that the drug could effect my hearing and after one chemo infusion, it happened! I know right, just laugh about it is all I can do. Go figure! As I was feeling like complete death after the chemo infusion I began getting ringing in my ears. Not constantly, but it was happening more frequently than not. When my ears weren’t ringing, my ears sounded very muffled, which I can only compare that sound and feeling like being under water. So with these changes, I knew it wasn’t good and I informed my doctor right away. I was then set up for another hearing test, which don’t you know confirmed I have changes in my hearing! Of course I do after only one chemo treatment. I now have a mild hearing loss in my left ear and a moderate hearing loss in my right ear, which is permanent damage. At this point, they can’t even tell me if this will be the extent of the damage because it can continue to get worse over time, even when I am finished my treatments. The ringing and muffled sound in my ears will not go away. I was told that some people over time learn to process those noises and put them in the back of their brain, but other people can not so there are assistive devices to help with that. I know right this isn’t the end of the world, but I also don’t know what is going to happen moving forward. Is my hearing going to continue changing from that one chemo dose? Are the doctors going to keep me on this strong chemo every three weeks? Will the chemo be changed to weekly doses? Will the doctors change the chemo drugs completely because of the hearing loss? These are all questions I do not have answers to until I meet with the doctors next week. I do understand the BIG picture is to get rid of the cancer, but honestly losing 60% of my vocal cords the last time, which has completely altered my voice, and now losing a portion of my hearing is just complete insanity!

On top of all of this, the Proton machines for radiation have still been down. This is the longest period of time the machines have EVER been down. See once again, my luck. I was literally on the table when the machine went down. There has been teams of people from all over the world working around the clock and it is still not working. They are “hopeful” the machines will be up and running next week….but I am holding my breath on that too. (Because I have heard that multiple times the past two weeks).

So literally I have no idea what is going on right now with my treatment. I don’t know times for my radiation appointments in advance because the hospital is taking it day by day and I do not know what machine I am going to be on. That makes planning rather difficult for logistics on who is taking care of the kids and who is going with me to treatment, but thank goodness I have an amazing support group who understands my frustrations. Now, with the hearing loss I also have no idea what that means for my future chemo appointments. This all drives me crazy as I am such a planner, but I am trying to take everything in stride one day at a time.

After finding out about the hearing loss, Rob asks me “is there a side effect you don’t get?” Honestly the only thing I can do is laugh about it because crying is negative energy that I definitely don’t need. But just maybe with the way my luck is going I should go buy some lottery tickets since I am continuing to beat all odds with potential side effects.

Never in my wildest imagination did I anticipate the way this week has made me feel.  The emotions of leading up to treatment as well as all the anticipation of what treatment was going to be like was far undermined in my mind.  

After leaving the hospital on Monday, spending the entire day without any treatment, I was rather disappointed.  Again, I had one more day to contemplate what treatment was going to be like and never did I imagine the start of chemotherapy to be like this…  

Tuesday morning I went to my scheduled appointment with my medical oncologist to discuss any last minute questions or concerns prior to treatment.  After meeting with the doctor I got my blood drawn and then set up for first chemotherapy session. 

At this point I couldn’t believe this was about to happen, as it felt so long for the day to actually arrive.  I was feeling so hopeful and excited to get this journey started.  During my four hour chair infusion visit, I ended up sleeping most of the time.  All of my emotions, lack of sleep and energy finally just poured at the waist side and allowed me to sleep as my mother stayed there watching me.  I can only imagine the thoughts going through her head at that time. 

Once chemotherapy was over for the day, I felt pretty good leaving my chair.  I went to the radiology department because  I was being squeezed into a session on IMRT (Photon Radiation) since Proton machines were still down. Upon leaving treatment, I felt fine until I sat in the waiting room to get my first radiation visit.  All of a sudden I felt this sharp, over powering migraine begin to set in, so I spoke with a nurse practitioner who informed that one of the anti nausea medications can trigger migraines.  Now isn’t that just great!  I had to sit and wait over three hours to be squeezed in for my first radiation treatment with a migraine.  Finally I was done treatment for the day and headed back home.  Between the first two days of “treatment” I spent over twenty-three hours in the car driving to the hospital, in a waiting room or in treatment for only having one day of treatment under me.  My body is exhausted, physically and emotionally.  

Wednesday started a new day.  I was NOT ready to get up in the morning.  Rob was traveling for work and my mom came to my house to pick me up.  She found me lying down on the bathroom floor.  I was so sick throughout the night.  I couldn’t imagine driving in the car, sitting in traffic for two hours, but I had to do it.  I showed up at the hospital completely out of it from all these medications I have been given.  I had radiation #2 completed and then went for a chemo flush of liquids for two hours, which I slept through again.  Some medications were adjusted and I was scheduled for another chemo fluid flush on Thursday.   I came home from the hospital and slept the afternoon away.  I went to my son, Brody’s tball game that night to watch him play and to get some fresh air.  I was able to watch some of his game, but then I needed to go home because I was not feeling well.  Watching him play his little heart out definitely gave me something to smile about in the mist of my agony.  

Thursday was day #3 of radiation.  I did not sleep well again and the nausea continued.  I couldn’t eat.  Nothing seemed appealing to me.  I tried to force some high calorie, protein rich foods but it wasn’t too successful.  I met for a long time with my radiation oncologist because at this point the Proton Machines are still not working.  We discussed the possibility of switching locations, which the next closest I would be referred to was the University of Maryland.  The lag time in finding a new doctor and going through all the plans again would not be beneficial in my case.  At this point there are engineers in from Belgium working on these machines around the clock.  It is with much hope they will be running by the middle of next week.  I really hope this is the case because I do not want to stay on the IMRT (Photon) machine my entire treatment.   In addition to meeting with the radiation oncologist I spoke with my nurse practitioner and switched up medications to help the chemo side-effects.  I came home from the hospital and slept all afternoon again until it was time for my oldest son, Bobby’s baseball game.  I went to that game but again could not make it through the entire game watching so I went home and went to bed.

Friday was day #4, the end of the longest week ever!  I had radiation and chemo fluid flush again.  My medications were changed as this was the last mega dose of medication that was being suggested.  This one was referred to as a “rescue” anti-nausea medication.  Again another medication that makes me drowsy, which is something I did not need.  I have been tired enough.  I came home in the afternoon and slept for hours to only wake up for about an hour and then slept until Saturday morning.  It was the first night I actually slept, without any nausea waking me up.  This is great news, but the dizziness, drowsiness and the way my body feels is simply not right.  The amount of medication I have taken this past week is beyond sickening.  Here’s to hoping this gets under control and I can have a little more energy back sometime next week.  I need to rebuild my strength to get to the next chemotherapy week.  

Never in my wildest dreams did I imagine week one going the way it did.  I knew what to expect with the radiation as I have been through that before.  I felt confident I was going to have a few more weeks of feeling okay since my doctors informed me that by week 4 is when I will really start to feel like crap.  Well gee if that isn’t scary based on how I felt this week!  

In my previous post I asked for someone to just pinch me, not literally beat me up so bad that I am out of commission but that is what happened.  My kids are adjusting differently to everything going on.  Bobby is the most compassionate seven year old that I know.  That’s just who he has always been.   He has been giving me hugs without being asked, asks me how I am feeling and if I need more rest.  Brody is my five year old who would return back in my uterus if it was possible.  He has been having really rough nights sleeping and crying for me during the night.  He’s the one asking so many questions and is the first to run to give me a hug when I walk through the door.  As for Natalie, little three year old self knows how to hit the soft spots.  Natalie tells me she won’t use the porta potty at her brothers baseball games, because “Mommy can’t get germs.”  She’s the one that will snuggle up to me and just whisper “Mommy, I miss you.”

 

You know it’s hard.  Its hard for me and my kids from being home and taking care of there every need to basically doing nothing for them.  They notice that…

It’s hard for me that it’s the end of the school year and so many fun activities are happening at their schools that I should be going to watch, and I can’t.   It is my hope that by missing this one year I will be able to be there in all the years to come. 

It’s hard on my husband who is the rock I have been leaning on.  He’s picking up so many pieces at home as well as working everyday to support our family. 

It’s hard on my mom who is watching her daughter go through this again all during the time we should be celebrating her life cancer free for the past twenty-five years. 

It’s hard to watch relationships unfold, some move closer, some further all in the mist of cancer.  

Someone needs to pinch me.  This can’t be real life.  I have been waiting with my hands tied for way too long now in anticipation of starting my treatments.  

Last night was again another sleepless night, holding my breath while millions of thoughts raced through my mind about all the possible challenges about to arise.  I got up out of bed in the morning and actually put on jeans, a cute shirt (not wearing my typical gym/mom uniform) and some makeup.  I was ready for the day ahead of me.  My mom and I drove to the hospital in prime time traffic, which means the drive took two hours and fifteen minutes.  Then we waited in line for the elevator, which I had to take a picture!

I entered the radiation waiting room and was informed I needed to watch a video since it was my first day.  The video welcomed me to proton radiation and explained how technical and sensitive these machines are, which in turn makes them need more frequent maintenance and at times can post-pone treatment.  At the end of the video, my mom and I joked about how seeing that video would of been helpful to see prior to last week since my treatments were canceled all week.  I was quickly called back to the proton radiation waiting room where I changed into the hospital gown.  I sat and waited and was informed that the beam from the machine was running slower than usual so the technicians were sorry they were behind schedule.  “As long as I get a treatment in today, I am fine with the delay,” I said.  

An hour after my scheduled appointment time, it was finally my turn.  I have never seen anything like it.  This machine is HUGE!  It’s two stories tall and different pieces come from all different directions to get the beam in the precise location.  I was informed that today my duration on the table was going to be a little longer than normal since it was my first day.  The technicians needed to double check all of the beams and images to allow the doctor to review before the beam was delivered.  So, I laid on the bed in position as the proton machine spun around me and different devices came in various directions.  I was laying still and everything was going smooth, although I was in utter disbelief what was actually happening and intimated by the size and complexity of this machine.  The doctor was going to review the images and then I was going to start treatment within a few minutes…

As so many thoughts were racing through my mind, I was informed that the machines were having problems! The engineers were on their way so I was going to have to wait about thirty more minutes.  I sat back in the waiting room frustrated but calm trying to look at the bigger picture that now my images were completed so I was partially through day one.  We waited…and waited.  We continued to get additional updates that the engineers still were not sure what was going wrong and kept being told an additional update would be given in one hour, then two hours, etc…

We continued to wait until mid afternoon when we were given an update again that the machines were still not working.  We decided to leave the hospital and it took two hours to get home, which made our day of waiting in anticipation ten gruesome hours.   

Going to bed tonight I do not know what is going to happen tomorrow.  I am scheduled for my first chemo appointment, but now I know I won’t be going to that if the radiation machines are still down.  Tonight do I go to bed in anticipation of starting treatment, being stuck at a hospital for countless hours inundated with radiation and drugs or do I try to plan a day of normal life activities with my kids while cancer continues to have a field day in my body?  

It’s a feeling that I would do anything to get out of, but the restriction is so tight being that my hands are tied.  Each day that continues to pass, more thoughts cross my mind.  As I was supposed to start Radiation and Chemo on May 7, 2019 I reluctantly found out that was not going to be the situation.  

On May 7, 2019 I woke up at 4:30 A.M., or should I say got out of bed because I am not really sure if I slept at all that night because I saw every hour on the clock.  Anxiety was at an all time high as I needed to wake up early to leave for my first radiation and chemotherapy appointment.  My three children slept over my in-laws so Rob and I could just get up and go in the morning.  My bag was packed with the items I was bringing to keep me occupied and warm during my four hour chemo session; blanket, slippers, chapstick, snacks, ice water, dry mouth spray and all my other dry mouth items, phone charger and magazines. Rob and I started driving to the hospital and were talking about how excited we were that this was starting so we could get it over with.  We were about thirty minutes into our commute when I received a phone call explaining to me that the Proton radiation machine was down and would not be working for the day.  I knew this was a possibility as I was informed they would be working on the machine over the weekend, but I assumed since I did not hear anything on Monday I was good to go.  Especially considering Monday evening (May 6, 2019) around 7:30PM I received a call from the chemotherapy department telling me they were anticipating my arrival and were all ready for me.  So, once I found out over the phone radiation was canceled I questioned if I should still come to the hospital since I was scheduled for Chemotherapy.  Deep down inside I didn’t think I would start chemo that day since I thought the doctors wanted to start them together, but I was told to come since I was already half way there.  It was too early in the morning to call the medical oncologist department, so Rob and I decided to keep driving since we left so early to avoid traffic.  Upon arriving at the hospital I was told I would be starting chemotherapy since it was a different department, however it wasn’t until one wonderful nurse heard me continuing to question why I believed this wouldn’t be the case and she stepped in.  This nurse took charge and followed her phone chain trying to reach someone to get an answer, but was unable to get through to anyone with it being so early in the morning.  Finally my doctor was called and I was told to not start chemo and that I would be rescheduled.  So out of utter disgust, Rob and I drove back home.  I was simply livid!  Is this really happening? Why didn’t anyone call me the night before if they knew the machines were still down?  I have been psyching myself up to start my treatment and finally I thought the day arrived to only be turned away.  

This week was another long week waiting in anticipation of when the machines were going to be working again.  I found out the machines were going to be down the entire week.  How is this even possible?  What is happening to the patients that are in the middle of their treatment?  Is this going to happen to me when I start?  All of these are questions I continue to have and will address when I meet with my doctors.  

On Friday, I received a call that the machines are up and running again and I am scheduled to start Radiation on Monday May 13, 2019 and Chemotherapy will start the next day.  As long as I start chemotherapy within the first three days of radiation I will be good to go.  

The thought that cancer continues to grow and another week just past by with nothing being done about it utterly freaks me out.  I am also holding my breath about treatment starting on Monday, because is it really going to happen?  I am beyond ready to get this battle started yet the machine was not.  “Those machines are afraid of you,” a friend told me when he found out I didn’t start my treatment.  This comment definitely made me laugh, but I sure hope its the truth because I am literally at the point where the handcuffs NEED to be released so I can put my fighting gloves on.    

 

Lately all I know is that my life has felt like a large puzzle, with pieces everywhere and nothing connecting.  There has been so many questions and so many possibilities.  During the past week, I feel as though the puzzle is coming together.  I heard from insurance that I was approved for Proton radiation, prayers are being answered!  I made the decision to stay home and be treated at Penn.  I was able to get my schedule for treatment, which means I will be starting Radiation and Chemo on May 7, 2019 with my last radiation day being June 21, 2019.  I have figured out a schedule on who will be going with me to treatment and who will be with my kids.  I am so fortunate to have amazing family and friends and I count my blessings everyday because especially during this time, it takes a village! 

I received an unexpected phone call from my radiation oncologist this week to inform me of possible side effects from the radiation.  Although the chances of these side effects are very low since I am getting Proton radiation, there is still a chance so I needed to be warned.  Due to the location of the tumor it is very close to the spinal cord, which if that is hit it could be paralyzing.  The tumor is also located near where a group of nerves come together that control the function and feeling in my right arm and hand.  There is a chance I could lose feeling or function in my right arm/hand.  The radiation could also damage my esophagus causing difficulty swallowing, in which case I could potentially need to have my esophagus stretched one-two times a year or a hole could form in my esophagus, which is life threatening.  I am very well aware of the fact that these side effects have a low possibility of happening, however I can’t help but worry especially considering my chances of this type of cancer, this number of times is practically unheard of.   I truly believe I am going to beat cancer, but right now I am questioning how else my life going to change from all of this?  I still get people asking me why I talk the way I do, or make comments that I don’t sound good.  I have grown to accept those comments because the reality is, most people I know have never encountered a woman my age experience this type of cancer.  The really scary part of all of this is the fact that these radiation side effects won’t show up during treatment, but will show up 2-12+ months after treatment and the doctor can’t tell me when/if I will ever be clear of these potential side effects.  Radiation is just a gift that keeps on giving!   For now, I am not only scared of the chance of losing my hearing from chemo, but now all these radiation side effects!

Currently I am simply trying to take all of this one day at a time.  I am more than ready to get treatment started so this cancer can stop growing in my body! It’s a very strange feeling to know cancer is continuing to grow, yet nothing is being done about it yet…