Life in the Immediate Aftermath of Cancer

Life in the Immediate Aftermath of Cancer

Mental Side Effects

I can't explain this phenomenon. For 7 months you see doctors and nurses daily. Everyone knows you by first name. You feel like you belong. The "no exceptions ID policy" at the hospital check in no longer applies to you because everyone knows you and looks forward to seeing you at 10:45 every day. Cancer and cancer treatment invites you into a community of acceptance and love, without the mushy gushy kissing and hugging and crying that you might get at home. Even though you feel like crap, you feel GOOD to be a part of this community. You share gossip daily with your chemo nurses and then again with the radiation nurses. You make friends with the others who also receive chemo on Thursday mornings. You make friends with their family members who come sit with them. And then one day, quite unceremoniously, they tell you "you are done - go back to your life now".

You are not quite cut off so cold turkey, you will have to see your doctors every month or at least every three months for a while, and then at least once a year for the rest of your life. But just like that, your supportive cancer community is gone.

I was not sad right away. I tried to make the unceremonious into something ceremonious by posting "last day of chemo"selfies on Facebook and going out to dinner on the last day of radiation. Of course

Last Day of Chemo Facebook pic

my disability ran out so I went back to work a week before radiation ended. Once the last day of radiation ended, I was exhausted from a full week back at work. But now what? For months and months my primary goal every day was survival. I listened to other people on Facebook and in the office complain about politics and romance problems and I laughed inside because it all seemed trivial if you might not live to see tomorrow. I never thought that my cancer had progressed enough that I could die at any time, but as sick as I was after surgery, and after my first few chemo treatments, I was ready to take death over treatment. I thought treatment may well kill me. Now all of a sudden I was supposed to just assimilate back into the world obsessed with retail therapy, dieting, and what the Kardashians are doing? As soon as I returned to work full time, the first emotion I had was that I didn't belong here. They laughed about things I didn't see humor in. They found entertainment where I didn't. I had fun drinking with them. Everything is fun when you have had 6 or 7 wines!

Wine Tour with VoIP Supply buddies

But a job I was previously very happy with didn't seem so crucial to me when an acquaintance from a few years back offered me a new position. A new position, new outlook, work from home, less people to deal with every day.... sounded right up my alley. Also at this point, after the 'excitement' of treating cancer for 9 months, the monotony of regular life was really getting me down. I was looking for something different and new. Possibly a change of scenery, a move out of state. This new position offered me that opportunity. Right then seemed like the perfect time to see what I could do with it.

So 2 months after my very last radiation treatment, I embarked into a sales/product management position handling the Panasonic brand line for a company HQ'd in Florida. The new job started with 2 weeks of onsite training, meaning onsite in Fort Lauderdale, FL. I think that change up saved my life, or at least my sanity. The depression was building that had resulted from going from constant excitement and change and a full schedule of appointments and treatments every day to returning to a daily regimen of 7am in, noon for lunch, 4pm out, make dinner, cheer/football practice, go to bed, repeat - day in and day out.  I was out of work for 3 months and when I returned the same issues were still going on - like they just sat there and waited for me to come back and address them. I needed change and excitement. A new career with HQ in Fort Lauderdale gave me just that. And my dad's girlfriend Cathy was kind enough to come stay with me for the weekend while I was down there!

Me and Cathy (part 1 of the Entertainment Entourage) in Fort Lauderdale

Health Side Effects

Lymphedema

All along, I was aware that my mastectomy, reconstruction attempts, and the following radiation could put me at risk for a condition called lymphedema in my arms. Part of the mastectomy was that they doctors removed lymph nodes in my armpit and then my arm to check for spread of the cancer. On my right side, the sentinel lymph node under my arm pit had a lot of cancer, so the doctors took an additional 17 lymph nodes from my right arm. On left side, they only had to take 3 lymph nodes. This put me at something like a 10% chance of lymphedema as I mentioned before. Lymphedema is when for any reason, the white blood cells fill your arm or hand, you are missing the lymphatic system to drain those white blood cells out of your arm, causing an unsual and long term swelling. It was a small chance that I would succumb to Lymphedema, but if I did, it would be a permanent condition. The chances were slightly increased by my choice to do radiation.



Can you guess which hand has Lymphedema?

So OF COURSE one time in February, five months after I was cured of cancer, someone asked me how I was feeling. Without thinking of that terrible Murphy's Law that follows me around, I answered how awesome I felt, how it felt like I never had cancer, how I recovered beautifully and had no long term side effects (besides not having any boobs) and how it really wasn't that bad. At that moment 'Murphy' put his palm to his face and decided to take his wrath out on me. At the beginning of March, my right hand started to hurt. I thought it was from the long hours I was putting into work and the extra typing I had been doing with a new task that was recently added to my job. I thought maybe carpal tunnel was returning. By the second week of March, my right hand was quite swollen. Enough that you could tell without having to measure. Then on March 17th I had to fly to Florida. By the time I got there, my fingers looked like sausages... it was all downhill from there. I officially had Lymphedema and that would occupy my worry and my time for half of 2014. It also took away my speed demon typing skills. That made me sad. My physical therapist had me wrapping my arm from finger tips to shoulder to compress the swelling out of my arm. She told me to keep the arm wrapped 23 hours a day, every day, for at least the next 6 months.

Arm Wrapped for Lymphedema after day 1 of physical therapy 4/24/14
 



 

Bone Pain

In mid April, I had gone to a beer bash for my daughter's travel softball team. A new extra curricular activity for her this year which quickly became her only reason for living. It used to be that Sarah's heart belonged to dance, and then cheer, and then softball, and then boys, and then saxophone. Now a days, her heart belonged only to softball. And unlike the other things she 'loved to do' where I had to constantly remind her to practice, I had to yell at her to STOP practicing softball.  Hours a day she spent by herself in my yard using the side of my house as a target. So I was really getting to know and like the parents of the other girls on her softball team when the beer bash came up. So it was no surprise that I stayed until they kicked us out, drank enough to get my $25 worth of beer, and danced every song that Hit N Run played that night.... and then went out to another bar for more fun! I wasn't drunk, but I was feeling good enough to DANCE - something I hadn't done since maybe the early 2000's. So I guess I shouldn't have been surprised when the next day my left hip was really hurting me. It hurt to go up stairs, it hurt to go downstairs, and it hurt to pivot my left leg, for instance, to turn and get myself out of the car.

But I am 38 years old. Anyone who is getting old would hurt after drinking and dancing all night. What was different is that I hurt from April 13th until July. It never got better. Some days were worse than others, but it wouldn't heal, and I didn't know why. My doctors didn't know why.

Then at the end of May, after a moderate day of walking at one of Sarah's softball tournaments, my left calf started hurting. The same side as my hurt hip. I am no stranger to the gym. Muscles get pulled, muscles hurt. You get over it. But my calf muscle started hurting on May 31st. As of June 13th it was just as sore and once again not healing. No doctor could tell me why this was happening. They did bone density scans and good news! I am fine! They did Doppler tests looking for blood clots in my legs, and I got more good news - I am fine! I went to two massage therapists. Around mid-June I also began getting acute pain in my right shoulder blade in my back. I never even called my oncologist about this, I just saw the massage therapist. She found no knots, no tears, no heat, no lumps or any other signs that there was muscle or tendon damage. She asked me to see a Rheumatologist because she thought she was hurting more than helping me. I was really feeling like a 78 year old woman the way my body was falling apart and aching over the silliest things. It was scary and embarrassing. What made it worse was that the best medical doctors I had ever had could find nothing wrong with me. That made everyone around me think that I was making up the pain. Besides, if there is nothing wrong, you must be making it up, right?  Do you know how hard it is to get up and go about your life every day in pain all over your body and have nobody believe you?

Finally in late June I called my oncologist and said regardless of what all the xrays and tests show, I know there is something wrong. It may not be a normal side effect, but maybe bone pain is a side effect of the Tamoxifen that I have been on since the end of September?  Dr. Dougherty's office said that bone pain is such a rare side effect that they didn't even consider it. That's all I needed to hear! OF COURSE that's what it is! Any weird or rare effect is going to happen to me! Have you met me? Knowing that I was scheduled for breast reconstruction on July 9th, Dr. Dougherty told me to stop taking the Tamoxifen until that surgery. If my pain got better - then we know. If not, I get back on it and we keep looking. Unfortunately, after a week of being off Tamoxifen, my hip and my calve got better. My shoulder blade got better last. The day before my surgery, I felt great! I even took the kids to Darien Lake and rode all the roller coasters myself! Things were looking up!

But I NEED to be on Tamoxifen. It blocks Estrogen from my body, and Estrogen is what caused my cancer. After my reconstruction, I will need to go visit Dougherty to see what alternatives there are to Tamoxifen. But finally I know WHY I was in pain. Apparently that's most of the battle!

So now on to the next event - breast reconstruction!

Daily Radiation- Actually Quite Boring

On August 5th I began my 33 days of daily radiation. I was instructed to come to Dr. Khalil's office every day at 11:00am for a 15 minute radiation session. It took longer to get to the doctors and get home than the actual session.  I assumed a "15 minute session" meant I would be sitting in the waiting room for a half hour, sitting in an exam room for 10 minutes and then have my 15 minute session. I calculated an hour to an hour and a half every day for my radiation. I was pleasantly surprised.

I had to make more changes to my routine than just making time in the middle of the day, Monday

through Friday, for the next six weeks. I also had to be very careful about anything I used on my skin in the area that was to be radiated.  I could not put anything on that had metals in it. This sounded so strange to me, it's not like I rub myself down with liquid gold or anything. I promised to keep the body glitter at bay for the next 6 weeks. However, I learned that most deodorants have aluminum in them.  So I had to go buy an unscented organic deodorant that was aluminum free. I also could not use any soaps or lotions that had fragrance, so I had to switch to Dove unscented soap.  Neither of these changes really bothered me, it was just a matter of changing my shopping habits.

Getting Ready

The first step in getting ready for radiation was to do an X-ray of the breast and lymph area where the cancerous tissue was. After all, this is most likely where it will grow back if there was any left behind. The X-ray determined within millimeters exactly where the beam of radiation was going to go. Radiation in its pure form can cause cancer so the doctor had to be extremely precise about where he pointed the beam to ensure that it killed only bad cancerous cells and not healthy cells.

Once the radiation team saw exactly where to point the beams, they noted very scientifically where to


Example of a body mold

aim every time. Then they wanted to make it easier by making sure that I laid in exactly the same position and spot every time I came in. So for this, they created a mold of me. To do this, the radiation therapists Had me lay in exactly the position they needed me to lay for radiation. They had me lay on top of  plastic polymer bag which when triggered by breaking a packet of solution inside it, got very warm and expanded to fill any gaps it found. I always used a similar product in the warehouse at work to pack boxes of breakables so that they wouldn't move during shipping. The process of making a mold didn't take long at all. And that mold would greet me on the radiation table every day for the next 6 weeks.

Next, there was a laser beam that originated in the ceiling that would form a matrix across the room when the lights were dimmed. Me and my mold were strategically placed on the radiation table and then the nurses determined where the laser matrix fell on my chest. They then gave me 3 tattooed dots in my chest to line up with 3 axis.  The dots are very small, they look like freckles, but they are black instead of brown. I will have them the rest of my life, but really only I know they are there (well, me and my radiation team).  Then the major axis was traced on my chest with a medical marker and sealed with long lasting clear medical tape. I was to not take the tape off and advise the nurses if it is coming loose for the duration of my treatments. 

In the process of tweaking me to be in the most precise position, the table was moved ever so slightly left and right until the nurses (all 3 of them) verified that 14mm has been achieved.  I have no idea what the 14mm measurement was measuring, but I just know that I had to be at 14mm before they could proceed. Once I was at 14mm, then they would raise the table until 97 was achieved.  Once this was verified, I was ready to begin.

Let's Get Started

My first day of radiation was my longest visit. I was in the office, done with treatment, and back in my car in less than 30 minutes. (YAY! A short doctor's visit!)  As soon as I checked in, I was escorted to a changing room to take off any shirts or sweaters and put on a medical gown opening in the back. I could wear my pants, sneakers, and jewelry (Except necklaces).

Then I would wait in a chair in the changing room with the door open until the person ahead of me was done getting their treatment, at which time the ladies would come in and get me. For safety reasons, before they would treat me, I would have to walk up to the computer terminal in the room and verify my name and date of birth. Just to be sure they were giving me the treatment that was really for me.  The first 2 days this made sense, but after that these ladies knew my name, my face, my kids' names, my husband's name, the names of all my wigs, and they knew which days were workout days. In short, they knew everything about me, so having to go through this routine every day was comical.... except the one day I actually got my birthday wrong and gave them my son's birthday. You will be glad to know that they actually caught it and called me on it right away... they did their job well.

Once I was verified, I would lay on a long, skinny table and pull my gown down to expose my bare


arms and chest. Then I would raise my arms above my head and fit my back, head, and arms into the mold that was on the table.  The radiation nurses would tug and push my body ever so slightly until the laser matrix that was beaming from the ceiling was lined up perfectly with the tatoo'd dots and drawn lines on my chest.  Then the radiation nurses would check the computer terminal to check what my 'lucky numbers' were. Once "14mm" and "97" were achieved, the ladies would leave the room and shut the door.

Receiving Radiation



The Radiation Machine

Just as in the picture above, radiation was administered by what looked like a giant X-ray machine. It actually did take X-rays too. The arm of the machine would start directly overhead, as in the picture. I could tell when the radiation beam was going to begin because there would be a low buzz right before it began. The buzz was similar to the sound of a washing machine after it empties its water and is just about to start the spin cycle (As I write this, I wonder if anyone in the world besides myself actually knows that sound....) When the beam begins it makes a loud thumping noise... not as loud of a noise as you hear when you get an MRI but relatively loud. The beam would hit my chest head on for about 15 seconds. Then it would stop and the arm would glide to the right and reposition itself so that it was focusing on my armpit, where the lymph nodes were removed. Then the buzz and the thumping noise.  Then the arm would move so it was right next to me on the right and again target my armpit... buzz and thumping.  At that point, the radiation nurses would come back in, raise my table about 6 inches, and leave again. The arm would then rotate under the table to attack the breast tissue through my back. Once that 15 second beam was complete, the ladies would come in, turn on the lights and let me know that I could lower my arms. The table was lowered and they would help me sit up. At that point I could get dressed and leave. The whole process was about 15 minutes.

At the first visit, Pam, the head nurse, gave me a tube of Radiaguard skin lotion. I am not sure how this was different from any other lotion, but I was instructed to apply it liberally every single day immediately after radiation. I didn't understand this because during my first treatment I learned that radiation was painless. I didn't feel or see anything. No light beams, no heat, nothing. Many days I actually wondered if there was anything coming out and if the whole concept of radiation was a farce designed to get money from insurance companies. (I had to think of something while I was there every day).  Towards week 6, I began to accept that there was truly a beam of some sort coming out, because there was a red rectangle on my chest that wrapped around under armpit and around my back. My scar on my right breast was very dark, almost purple from the radiation.  So every day at the end of my session, I would go to the changing room, slop myself all over with the Radiaguard, get dressed and go about my day.

Missing only 1 time, I came back to see my favorite nurses every Monday, Tuesday, Wednesday, Thursday, and Friday for 33 sessions. The one time I missed was so I could attend our annual golf tournament, the Charleen Grzybowski Golf Event, in honor of my Mom.

Next step: Radiation

Many people that I have talked to about my journey through cancer think that radiation and chemotherapy were one in the same. They are not.

Chemotherapy is a chemical that is injected or swallowed into your system that attacks cancer in the blood and lymphatic system. Wherever blood goes, chemotherapy goes. Radiation is a spot cure. They point the radiation beams where the cancer is or was and the beams of invisible poison kill the cancer at the spot. I was unfortunate enough to need both.

I say unfortunate here but actually I was very fortunate. I have a few friends who have been going through their cancer journeys for years. Mine was very acute. I was diagnosed, they cut it out, they treated my lymphatic system via chemotherapy, they treated the site of the tumors with radiation. One after another, boom, boom, boom, and boom. And then I moved on.

I didn't feel that way when I was going through it. It seemed like the treatment was never ending. All summer, the only goal I had was to finish chemotherapy. I was certain that if I died from cancer it would be from chemo. The digestive pain and the bone pain was worse than the pain of cancer. I thank marijuana for the relief from digestive pain and I thank disability leave for the relief of bone pain. Me and my recliner and a cold drink became BFF's over the summer of 2013. Extra special thanks to Mike Fix who installed the central A/C in my house so I could convalesce comfortably this summer. Lord knows my Facebook friends got sick of seeing me bitch about my 89 degree house during the summer.

When radiation started on August 5th, I began going to Dr Khalil under protest. I went every weekday M-F through September 20th. Dr Dougherty told me that he couldn't decide if I needed radiation. So he sent me to talk to Dr Khalil, a radiation specialist. He told me that I was on the border between needing it or not. He referred me to Dr. Malik at Roswell Hospital for a 2nd opinion.

Before meeting with Dr Malik, I had decided I was not going to go through with radiation. My chances of a breast cancer recurrence were already down to 16-20% with the mastectomy and chemo. That was good enough for me. Radiation would bring it down to only 5%. That may seem like a no brainer to you, but consider this.... I have not had (a successful) reconstruction yet. Radiation will delay reconstruction by 9 months to 1 year. Until then I will either be flat chested or wear a set of prosthetic breasts.  With the mastectomy I lost my nipples (stop snickering). With radiation, the surgeon cannot reconstruct them, the skin is too damaged and would not recover from nipple reconstructive surgery.  With radiation, my ribs will forever be softened... which won't be a big issue unless there is trauma. Uh... have you MET ME??? I fall, break ankles, walk into walls, fall up stairs, and am by far the worst driver you have ever met. There WILL be trauma. Dr Khalil shrugged this off, but this was a major concern of mine. Will I break a rib every time I walk into a door frame??? No way, 20% to 5% was not that big of a reduction. I liked my odds at 20% chance of recurrence. I scheduled my reconstruction.

Then I met with Dr Malik at Roswell for my 2nd opinion.  Dr Malik scared the shit out of me. She told me that this was my one and only chance to treat this stuff properly. If I refuse radiation and go forward with reconstruction, I have a 20% chance of recurrence. If I fall in the 80%.... awesome. If I don't (Which I have already shown my propensity to fall into the odd part of the odds) it will be virtually impossible to see it. Gone are the days when cancer would grow in my boobs where I can feel it. Going forward I will have fake boobs, so the cancer will grow on the chest wall beneath the fake boobs. I would not feel it... until it has been there awhile and most likely spread. So the crap that I have been through this past year is NOTHING compared to what it will take to beat cancer next time. #1 - I don't want to do any of this again. I am thankful for this experience, once, but I never want to do it again. #2 - there were times, especially during chemo, when I wanted to say goodbye to my family and give up. If this gets harder, I won't survive. 

So I reluctantly called Dr Khalil back and agreed to radiation. At the same time I called and canceled my reconstruction with Dr Shastri, my new surgeon. <Insert sad face here>
And so the 3rd party of my cancer journey began on August 5th 2013...daily radiation.

Rebuilding after Chemo

When I finished chemo, I needed something to refocus on while my body recovered.  I had been off work since June 12th and working on strengthening my body per Dr Dougherty's orders. The first week of my work leave I started a couch to 5K running program.  Never in my entire life was I able to run more than a few hundred feet... not even when I was at my prime in 2005 weighing 130 at 5'7".  All my friends run 5K's for fun and I either don't go or I end up staying behind to grill and drink beer (not that this is a bad thing) but I want to be able to partake too!  And let's face it... when the zombie apocalypse comes, I was going to be the first one eaten.  Learning to run a decent distance is definitely something that was on my bucket list, so why not start now while I have time to do it and I am rebuilding my body anyway.  If I am already going to feel like hell, why not feel a little more like hell and do this thing!

 

So the program that I was using to learn to run a 5K was an app for my iPhone called 5K Runner. I

was supposed to run 3 times a week for 8 weeks.  I would listen to music on my iphone and the app would speak over the music and tell me to run for a minute then walk for 3 minutes, gradually increasing the run time and decreasing walk time over 8 weeks. 

At the time I finished chemo I should have been in my 4th week of the program, but I was actually only done running 6 times which was 2 weeks in.  I would run on the Monday and Wednesday before chemo (with Cosmo on the street) and then get chemo on Thursday and be in too much pain to run the whole next week. So you can say I was doing an 8 week program but at my own pace which looked like it was going to be more like 16 weeks.  Now that chemo was done, I had committed to hitting this program hard core and finishing it before my next reconstructive surgery. It was starting to get really hot outside too so I brought my 5K program to the treadmill at the gym.  Since I was going to be there already anyway, I would stay after each run to do a resistance workout. I needed to start rebuilding my pectoral muscles since a lot of them were stripped away in my March surgery and build up my arms again. 

 

This program gave me a goal to wake up and work towards again because up to this point, living through chemotherapy was my only goal.  The first 8 weeks of chemo were so hard, I told my husband on many occasions that I wanted to refuse further treatments. The nausea and stomach cramping were so bad, I would rock on my hands and knees at night trying to fall asleep through the pain so I wasn't a zombie at work the next day.  Then the second 8 weeks of Taxol were so much easier because I was able to sleep, but the bone pain was ridiculous. There were times I would go to eat and it hurt too bad to open my jaw to get the food in (Don't let me fool you, I still found a way!) 

 

The strange feeling when you are done with chemotherapy of "um, now what do I do?" is very unique in that I don't think anyone who didn't experience it could understand it. When that is your entire goal for a few months and you are so focused on it you can't see anything else around you and then you are done, it takes some time to readjust and find new goals.  I thought I would be elated to be done and have a nice party... instead, I ran a little and quietly moved on to the next big thing....

 

 

The Last Chemo Treatment

On July 11th, 2013 I received my last chemotherapy treatment. It was my 4th of four, 4 hour injections of Taxol (that's a lot of 4's).  The Taxol is always administered with Benadryl to prevent a reaction to it, so I slept most of the day while in treatment and laid out in the sun in the backyard when I got home.

It was a bitter sweet day. You would think that I would have been thrilled to be done with chemotherapy so I could move on and my hair could grow back in. In my head, I was. Chemo was definitely no fun. At the beginning I would bring my laptop with me and work while I was getting my injections, but the Taxol made me so tired I wasn't able to do that anymore. Plus right as I began Taxol I took a medical leave from work, so I had no laptop and no work to do on it.
But then I was bored. I thought I would cherish the invitation to just lay down and relax for at least 4 hours every other week but I felt anxious when I was sitting doing nothing.  And sleeping in a vinyl lined recliner is not all its cracked up to be. I would sleep and then awake surrounded by a sweat shadow, similar to Adam Sandler's in the movie Jack and Jill because of the plastic. 

 

But I actually looked forward to seeing these ladies every other week. The four nurses that knew my name (I don't know theirs even though I tried to memorize them every week) and they would comment every week on which wig I was wearing and which ones they liked most and ask me what I was working on for work... I would really miss them.  They always offered me cookies and pie (which I never really liked before, but now crave all the time... thank you chemotherapy) and ask me how my kids were doing. I would look forward to seeing them and telling them everything that happened the last 2 weeks.  During my last infusion, a newbie came in to get a tour of the infusion center and see where she would be lying down when she came in and the nurses offered her some cookies. I couldn't help but feel jealous... those are MY nurses! I know that I shouldn't have felt this way, but it's true. I did.  Still when I go back to see my oncologist I go to the infusion center just to say hi to the nurses and show them how my hair is growing back in.  I keep telling myself that when I return to work and have extra cash again (Like I ever had that even when I was working) I was going to buy them something really nice like an Edible Arrangement or something.   

 

 Even though I got my last chemo infusion on July 11th (with the Neulasta booster shot on Friday July 12th) my challenges weren't over yet. I still had the almost 10 days of bone pain and neuropathy that came from the Taxol and Neulasta to live through, and then a follow up appointment with Dr Dougherty. Then... dun dun dun dah! I get to schedule my boob reconstruction surgery!

 



Look Good Feel Better

The American Cancer Society has some really good programs for women with breast cancer. In the past I mentioned that when I called them, they sent me a ton of literature, a beanie to keep my bald head warm, some fake boobs to keep me looking feminine, and a free wig.  One of the other programs they sponsored is the Look Good, Feel Better program.

LGFB is about teaching women who are going through chemotherapy to discover how beautiful they can be in the face of chemo.  The experience of going through chemotherapy is different for everyone. My doctor told me I would lose the hair on my head and that's all. He was wrong. I lost all the hair from my entire body, including my eyebrows and eyelashes.  That kind of hair loss is enough to scare the crap out of your family when you get out of bed in the morning.  I have dark brown eyes and having no eyelashes or eyebrows made my eyes look downright scary.  I was scared of me when I caught my refection in the morning. Can you imagine the surprise when people would come to the door before I put on a wig or makeup?

The LGFB program provided top quality makeup to cancer patients and a 2 hour course to teach them how to use it to enhance their features. The course also taught how to tie and wear scarves to cover sensitive bald heads.

I attended the LGFB course at Roswell Park Cancer Institute on Monday June 24th. In my free makeup bag sponsored by the American Cancer Society, I received the following:

• Estee Lauder liquid makeup
• Oil of Olay lotion
• Vitamin Cream vitamin E and SPF Moisturizer
• Ponds facial cleansing wipes
• Elizabeth Arden loose finishing powder
• Almay multicolor blush
• Almay mascara
• Chanel lipstick
• Merle Norman lipliner and lipstick combo pencil
• NYC eyeliner
• It Cosmetics eyebrow pencil and brush
• OPI nail polish
• Neutrogena tinted lip balm

Why Chemo Patients Need To Wear Makeup

I have some before and after pictures. This should just about sum it up.

Me with no eyelashes or eyebrows before makeup

 

Me after learning how to draw on eyebrows and create the illusion of eyelashes

I am thankful to the LGFB program because when I took this course on June 24th, my eyebrows were already gone.  I was drawing them in to the best of my ability, but I always looked like I had one happy eyebrow and one mad eyebrow.  After I took the course and redid my makeup I went to the lunch room at Roswell Park Cancer Institute and got a tray of food. Three nurses came up to me while I was waiting in line and told me that I was absolutely beautiful. For no reason whatsoever. I wonder if they knew that I was visiting the hospital just to take this program? Either way, it was much appreciated, especially after seeing myself as the picture I showed you above that morning.

Treatment Takes a Toll

I was doing really well with chemotherapy. I had a positive outlook, I felt really crappy for 4-5 days and then I felt actually pretty good for 9 days.  After my second chemo treatment, my oncologist adjusted my Adriamycin dosage and I thought I was tolerating it really well. Things were looking up! But somewhere between the third and the fifth dose, something changed.

Goodbye Nausea, Hello Pain

The Adriamycin was causing terrible nausea and it made me want to die every other weekend for about five days.  After the second treatment, Doctor Dougherty reduced my dosage of the Adriamycin and the nausea subsided quite a bit.  It made every other weekend more manageable, still pretty crappy, but more manageable.  The nausea may have been less, but it took longer to get past it. I found myself still wanting to die on Saturday and Sunday, but still feeling tired and sick on Monday, Tuesday, and Wednesday.  I was having a hard time focusing and staying alert for a full day at work. That caused me to have to take longer to get stuff done. So what I used to get done in 2 hours started to take me 4 hours. And then when it got done, there were a lot of errors. My doctor called this 'chemo brain'.

Luckily the days of Adriamycin treatments passed and the Taxol treatments started on June 2nd.  I love Taxol because it does not make me sick to my stomach at all! I have already gained back all the weight (which wasn't much) that I lost while on the Adriamycin.  That's too bad, I really could have used that weight loss.  The Taxol treatment is a little more involved than the Adriamycin treatments though.  The administration of Taxol takes a little over 4 hours.  It is also really likely to cause an allergic reaction so when they administer it, they also include a shot of Benadryl to prevent side effects.  That means that I am as good as out for 4 or so hours.  So the Taxol takes a long time to get, but I sleep for most of it anyway.  Then, the day after my treatment, I go in again for a 2 hour saline drip to push the Taxol through my body faster and to get my Neulasta shot.  Neulasta focuses on my bone marrow to boost the production of white blood cells so that I don't get sick from everyone I come into contact with.

Of course I couldn't be lucky enough to get the Taxol and Neulasta without some pretty wicked side effects.  Both Neulasta and Taxol are known to cause bone pain.  Put them together and I have become a 70 year old woman with arthritis.  I get my treatments on Thursday and Fridays.  Then starting about noon on Saturday the bone pain begins.  It actually starts a little Friday night with pain in my jaw.  This past week I went to the Taste of Country concert at Coca Cola field on Friday night after my Neulasta treatment.  I started having issues opening my mouth big enough to get my sausage into it.  Yes, it sounds like there is a dirty joke in there....<snicker...>

Then around noon on Saturday the rest of the body goes downhill.  It starts with jaw and neck pain, then my shoulders start to throb.  By Saturday night my hips and tailbone begin to pound.  Then come Sunday the pain spreads to my knees, ankles, and feet.  The pain in my knees, ankles, and feet will last another 3 or 4 days, but luckily the rest of the bone pain subsides.

As bad as bone pain sounds, I have to sincerely say that it is a welcome side effect in place of nausea.  Nausea is the absolute worst feeling.  Here we are on June 18th and I only have two more Taxol treatments left to go so being closer to the end than the beginning gives me motivation to keep going.  I am glad that the acute pain in my major bones only lasts 2 days, but sometimes the pain and throbbing in my ankles and feet is so much that I will just yell in frustration. BUT, after suffering terrible heel spurs (technically it was plantar fasciitis)  last year, this pain is still less than that could be and knowing it will end makes it more tolerable.

What's Next?

When the Taxol treatments are over, it will take a few weeks for the lingering pain to go away.  Then my doctor will decide if I need radiation treatments or not.  If I do, I will receive a daily radiation treatment every day for about one month.  When that is over, I will return to work.  If I don't need radiation, then I will move on to my breast reconstruction.  I am really excited to get my expanders put in and start the process of getting my boobs back.  Being flat chested was fine in the spring when a big sweatshirt was totally acceptable.  However, the summer is a completely different animal.

In two weeks I will see a new plastic surgeon for a consultation on reconstruction.  I had a failed DIEP flap reconstruction and then a failed attempt to reconstruct with expanders and silicone implants with my current surgeon.  I think the fates are giving me all the signs that I should look for a new doctor.  I have an appointment with a new plastic surgeon on July 2nd to discuss reconstruction options.

My oncologist has told me that perhaps the pain from the Taxol and the frustration and dependency of
'chemo brain' would be lessened if I stepped out of the rat race for awhile and focused on better health.  As of June 13th, I am no longer working.  When I am not in chemo or in the immediate days of recovering from chemo, I am instructed to walk 1-2 miles a day.  So far I have been able to keep that commitment.  I am even taking my dog with me to keep me at a brisk pace. I even run a little, even though this is a hysterical sight. I caught a glimpse of myself in a storefront window this morning and it was pretty hideous.  Picture a heavy set woman with no boobs, no hair, no eyebrows, and no coordination trying to run with a stupid crazy yellow lab dragging her like dead weight. Add to the fact that I just can't run and I can tell you that I go out pretty early in the day when not too many people are on the street yet.

I Get By With a Little Help From My Friends

Food

So far, this year has humbled me so much more than any other period of my life.  I was always an "I can do it myself" kind of person. Whenever people said "let me know if I can do anything to help" I always said OK and went about my business.  I always thought that was just something people say, they don't mean it. This year, I had to say "actually yes, I could use your help" more than once.  When I received my chemo treatments, especially the Adriamycin, I couldn't cook dinner because the smell of it would make me terribly sick. Now with the Taxol it hurts to stand for too long so I can't prepare a decent meal. Thanks to friends and family, like Cheryl Beeman, Jenna Piasecki, Mary Machnica, Wendy Piasecki, and Tina Lane, I had dinners coming to my house for my family and myself that I didn't have to cook or prepare. Thanks to more friends like Cori Zagara, Missy Groth, Laura Fleming, Kim Stachowski, June Spencer, Carol Lorenzo, and even more that I can't remember, I always had a gift card for a local restaurant so my family could go out without me, or if I was hungry and just had no food in the house, I could grab some dinner.

House Cleaning

During this time I kind of said "screw it" about keeping my house clean. I try to keep it tidy, but thorough cleaning just wasn't that important. Until one day I was so disgusted that I just couldn't take it anymore and Melanie Mckowan came over and helped flip over furniture and vacuum under baseboards and behind couches and in cushions.  Well one day didn't help me get over my disgust for my dirty house, but I just don't have the stamina most days to go to town on my floors and bathrooms, and when I do feel good, I want to do something fun, not clean all day.  This is where my kids come in. Brandon (12) and Sarah (10) have usually helped me when I asked with only a small dramatic production, but I generally didn't ask that often. And when I did, I cut them a lot of slack because they just didn't do a lot of these things often enough to be good at it, like cleaning bathrooms, making beds with fresh sheets, doing dishes, and cleaning up dog poop.  Well, now that I can't do it all myself, the kids have a weekly chore list and they have to do these things regularly. This is allowing them to get better at them and they have really stepped up and taken on this new responsibility well. They can see what they have to do the whole week, so they are not surprised.  Now that I am home from work, I take the time to inspect their work rather than them just telling me they are done while I don't look up from the computer. If they did a shotty job, I make them do it again. This only happens once and they won't do a shotty job again.  They are learning how to have a job and I am enjoying a relatively clean house. It still smells like dog though, anyone want a crazy yellow lab?

Cards

Since January, I have received enough greeting cards to keep Hallmark in business another 10 years.  I read each and every one of them and have them saved.  I was even sending thank you notes to people who sent me a card, but I quickly got overwhelmed and was going broke buying thank you cards. Three cards in particular stand out to me. First, my friend Madalyn Mayer who I worked with for two years in 2001 and haven't worked with since has really been watching out for me. I think we have a bond because we share a birthday (not the year....).  She sends me a card every 2 weeks or so with coupons to stores that cater to mastectomy patients, newspaper articles about cancer and cancer resources, or just poems that she thought  I would like.  Then there is my friend Cheryl Beeman who I worked with for about 3 weeks in 1997 and have seen in person maybe 4 times since then. It is amazing how awesome people come into your life for random reasons and stay forever?! I thank email jokes and Facebook for keeping us together. Not only did Cheryl bring my family dinner (twice) while I was in the hospital, but she sent me a homemade card full of inspiration and funny pictures. Imagine all the funny things you see on Facebook all compiled into a small booklet. She sent that after my second Adriamycin treatment when I wanted to die rather than go back for anymore treatments and it was a real pick me up. Finally, I got a card, a handwritten letter, and a prayer card from someone I had never met before. My sister's boyfriend's mother sent me a packet of inspiration shortly after I got out of the hospital. I still haven't sent a thank you because it took me like a week to figure out who the card was from. When I realized, I was out of thank you notes and haven't replenished yet.  This woman I had never even met sent me prayers and an offer to help. This is truly touching and someday soon, probably tomorrow, I will finally send out a thank you note to her.

Thoughts for my Husband

My husband and kids have also been suffering. My husband because he is an emotional mess plus I am making him pick up the slack after me. He has had to do more around this house in 2013 than he has the past 13 years of marriage. Most notably, I made him finish building my privacy fence that was started in 2007.  Yes I nagged him the past 6 years to finish it, but apparently getting nagged by a cancer patient holds more weight. Thanks to my Dad, brothers, and brother-in-laws my husband gets out every once in a while. He needs to get out more, but can't seem to find the time between work and his addiction to Candy Crush.

Thoughts for my Kids

My kids have had it tough because I am making them work (see above). We don't really talk about it, but I suppose when their friends see their Mom with no hair, they tell them things about cancer and ask if their Mom is going to die. They also ask if they can catch cancer by coming into the house. This is taxing on young kids. About 2 weeks ago, my kids received a package in the mail. First, they were thrilled to get a box addressed to them. I am 37 years old and I still get excited to get boxes addressed to me. When they opened them, there was a pink and a blue teddy bear - one for each of them. The bears were sent by the daughter of a client of mine. This client had been my customer in one way, shape, or form since 2001 and I like to think that I have a friendship with him.  Knowing that his wife was a breast cancer survivor, he was actually one of the first people I told about my diagnosis.  Their daughter, Bella, is one year younger than Brandon and was in first grade when her Mom was diagnosed with breast cancer. She received a teddy bear, which signifies hope, and began teddypawsforacause.org.  TeddyPaws will be opening soon where you can sign up to send a teddy bear to a child whose parent has been diagnosed with cancer. If you can't wait for the site to open, you can email Bella Haurey at bella@exigent.net. Brandon said he was too old for teddy bears, but his bear lives on his bed and is there every night and every morning (except when my crazy yellow lab decides to take him for a walk). Bella Haurey was the first one who sent anything specifically to my kids, and I will be eternally grateful to her for it.


So to sum up this long overdue blog post. Living with cancer was not so bad, but the treatment will kill you! Luckily I am almost done and ready to move on to the final chapter of this terrible disease - reconstruction and recovery!