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!

Hair and Boobs Optional

I have cancer. Poor me. NOT!

I am not making a joke of cancer. Cancer is a very serious thing and not to be messed with. But not everything about cancer and chemotherapy is bad. There is a silver lining and I would like to share that with you.

Fashion

I have a different sense of fashion these days.  I used to have to wear Vneck or scoop neck shirts all the time because crew necks felt like they were choking and suffocating me. I have much more flat real estate on the front of my chest now and crew necks are just fine. In fact, now when I do wear my old Vneck or scoop necks, I need to wear a tank top underneath them. It used to be that when I bent over, everyone saw my cleavage. If I don't wear a tank top, now when I bend over all you see down my shirt is my waist.  This isn't sad. It has opened up a whole new wardrobe of shirts that never fit me quite right. I used to have to wear a 2XL. Now I can wear just a ladies XL (which graduates me back to shopping at normal stores and not having to shop at the fat lady store or online).  I have cheap concert or vacation Tshirts I have never been able to wear before but now I am more than comfortable in.  In fact, all my old shirts are now much longer on me, making them look like they fit so much better.  I just look like I am dressing better.

In my world, boobs are OPTIONAL! If I choose to wear boobs to work, when I get home at the end of a long day I take off my coat, shoes, hair and boobs.  If I am wearing a nice dress or a tailored blouse, I can choose to wear my $600 boobs.  If I am just going shopping or going to my daughter's softball game, I can choose to go boob-less. I don't feel the need to wear my boobs to work because everyone there knows what happened. They know that if I show up with boobs that they are fake. Therefore I wear my boobs as a fashion accessory. If I am in the mood that day or my shirt looks good but is just missing a little something, I will wear boobs. If not, I won't, and I don't feel bad at all about it. Best yet, if I do choose to wear my boobs out and I change my mind while I am still out, I can slip them off and put them in my purse on the fly!

Beauty

I have to tell you, I have the best hair. I have a blonde bob, I have a long blonde face-framing cut, I have shoulder length auburn hair, I have short red hair... and I can wear each of these hairdo's in the same day if I want!  Each of my hairdos are styled to perfection and I can be ready to go with them in less than 2 minutes a day. I don't need to wash, condition, blow dry, flat iron, curl, gel, mousse, or tease. I don't have to waste money on hair spray or ponytail holders.

I simply don't have bad hair days. If I want to take a quick nap (not that I have the luxury of doing that on most days) I can simply pop my hair off, hang it on a door knob or a kitchen chair and take a nap. When I wake up, my hair is still perfect. I can go to work on Friday morning with long blonde hair and then go out Friday night with short red hair without spending hours at the salon.  Best yet, I can be totally trendy and make my own fashion statement by just going out bald. Most women will never know if their head is misshapen or not. I know. Yes, my head is kind of lumpy and my scalp really was as white as it looked through my hair, but it tanned up quickly.

With all the time I am saving from not having to do my hair, I have more time to experiment with makeup.  I think my hair used to cast a shadow on my face because now that I don't have any, it seems like I have way more face to apply makeup too. Even my eyelids seem bigger, so I am having a great time with bold colors, eyeliners, and I actually wear blush now. What makes it better is that chemotherapy actually causes your skin to discolor a little. In my case, that discoloration looks like a tan. Eat your heart out.

Personal Care

Now ladies, if you weren't completely jealous already, hold on to yourselves now.  As of now, and probably for the rest of the summer, I don't have to shave. I was given an complimentary, pain-free body wax.  Not just an leg wax or an upper lip wax, but a full body wax.  I don't have to shave my legs, my armpits, nothing.  This means I can save $12.99 every 4 months on Mach3 refills! See! No shampoo, mousse, gel, hairspray, shaving cream or razors... I am saving money everywhere!  The only place I still have hair is my eyebrows and eyelashes.  I even blew my nose one morning to find that most of my nose hairs fell out.  I have to tell you, chemo sucks, but this side effect is pretty cool....

You simply don't realize all the problems that your hair causes.  First of all, I can shower in under 5 minutes and then be completely dry in 3 more minutes.  I only use one towel rather than one for my head and one for the rest of my body.  Sometimes I still put a towel on my head out of habit.  Secondly, my skin has cleared up. I always thought I had oily skin. Turns out, I only had oily hair.  Everywhere that came into contact with my hair became oily from it. No more T-zone on my face, no more 'bacne', no more shiny forehead. For years I have kept companies such as Mary Kay, Avon, and Clinique in business when all I needed to do was shave my head.  Who knew?  Lastly, my bathtub drain loves me again.  Why did God give me all the hair I had if he intended it to fall out every day?  My bathtub hasn't drained in real time in years.  No hair to fall out in the shower means no clogs. No clogs means the shower drains quickly and no rings develop on the bathtub which means it is much easier for me to clean.  Do you see all the problems hair causes?  Glad I don't have to deal with that.

New Experiences

Going through cancer and chemotherapy have brought me to some new experiences that I have to say I would have never had otherwise. For instance, I mentioned that my hair had fallen out. Chemo attacks the hair follicles of your fastest growing hair. Funny that the hair on my head was the last to go proving that my hair is the slowest growing hair in the entire world. However when it did start to fall out in clumps, I was quick to shave it rather than be a source of constant shedding.  However, between chemo treatments some of the hair on my head will start to grow back, forming small sections of peach fuzz on my head.  As I mentioned, I do sometimes go out bald. Bald is a fashion statement not to be taken lightly.  I either go all bald or all hair... this patches of stubble thing doesn't work for me.  This morning I had a brand new experience that I never thought I would have. I Naired my head.  Can you say that you have ever slathered your entire head in depilatory and then gone to fold laundry for 10 minutes?  I never thought I would have said that, but now I can say "Hey, I did that!"

Wig shopping was another of those experiences... Most women never get the opportunity to pick their hairstyle off a shelf and just pop it on their head. You can... any of you reading this could decide to wear wigs right now and go wig shopping. Most of you won't though. I know the thought never occurred to me until getting cancer.

Appetite

Since beginning chemotherapy I have craved the weirdest foods. This has helped me broaden my palate.  Before chemo, I would have never made ginger snap ice cream sandwiches.  Before chemo I would have never made a dinner of two strawberry Eggo waffles with a scoop of vanilla frozen yogurt between them. I also wouldn't have made fried bologna with fried green peppers and spinach sandwiches with goat cheese.

I used to have an appreciation for wine.  At one point in my life I would drink wine 4-5 nights a week but more recently I would drink a nicer wine a couple nights a week and always when I went out for dinner. Since being diagnosed with cancer I really haven't been able to enjoy my wine much.  Prior to my mastectomy I was on such a strict diet I simply couldn't drink.  After my mastectomy I was on Loritabs and afraid to drink. Now that chemotherapy has begun, I am not allowed to drink for 1 day before and 5 days after each chemo treatment. For the next four days after that everything tastes like pennies, especially wine, so I have no taste for wine.  BUT THEN, on day 10 I usually begin to feel wonderful. Exhilarated really. I want to go everywhere, do everything, visit everyone. I want to go out to eat, I want to enjoy a glass of wine or a mixed drink.  When day 10 comes, wine is better than wine has ever been.  On day 10, I drink wine like a wine connoisseur.  I appreciate the smell, the feeling of it in my mouth, the after taste. For this reason, I am really really bummed that I was invited to a wine tour with friends but it falls on a chemo day. I will have to make up for it over the summer.


So you see, cancer sucks. Chemo sucks worse. However, if you allow yourself to see the silver lining, it is there. I am the envy of all my friends because of the silver lining of chemotherapy. Hair and boobs optional is really the way to enjoy life.  Some weight loss would be nice, but I can't be that greedy.  Anyway, weight loss means I am sick and I don't really want to be any sicker than I already am after chemo, so this no weight loss is just another blessing in this whole ordeal.

When my kids are grown and I look back on the year 2013 I will say that was the year that I had fabulous hair and a kick ass tan!


 

Prosthetic Boobs

Just because both attempts to reconstruct my breasts failed doesn't mean that I can't have them. First of all, I am going to try reconstruction with silicone implants again in November. Secondly, there is a huge business for prosthetic boobs for mastectomy patients. I could literally shop on a shelf for them. I wouldn't be parading around naked with them, but I could wear them under my clothes and bathing suit so complete strangers don't stare.

Picking Out New Boobs

After my April 15th visit with Dr. Lindfield where her assistant checked my incision scars and my mediport to make sure it was healing ok, I stopped at the gift shop at WNY Breast Health on Sheridan Dr in Amherst (NY). The gift shop is right off the lobby for Dr. Lindfield's.  Upon walking into the small gift shop there was a variety of bras and bathing suits to choose from on the wall.  I asked the woman behind the counter if she had a solution for a flat chest and low and behold she did! As it turns out, silicone breast prosthetics that fit into a specially made bra are quite common for women like me who had mastectomies with failed reconstruction or who chose not to reconstruct.

The woman brought me to a nicely decorated private room and gave me a silk robe to try on.  She measured my chest to find a bra for me, and then she asked me what size cup I would like. I told her I wanted to replace my original size so I asked for a DD. She told me that a DD would be very uncomfortable and heavy plus she didn't stock them. So she brought me a C.  I am glad she knew what she was was talking about because fake boobs are much heavier than real boobs.  When they removed my real boobs, I lost like 4 lbs, maybe 5.  These fake boobs weight like 5lbs EACH!

Silicone breast prosthetics are shaped like a triangle and have no discerning marks, like nipple forms, or

anything on them. They are not meant to be seen. They fit discreetly into a pocket on specially made

mastectomy bras that look just like regular bras from the outside.  The fake boobs are very pliable and soft to the touch, but man are they HEAVY! You don't realize how hard it is to carry around those things you develop as a teenager until you go from flat to a C cup in an instant. Also, when carrying all the weight in your bra, the weight is supported by the bra straps. Guess where that bra strap hangs right on? My mediport.

I have said it many times, ain't nobody or no thing better touch my mediport.  It is still very tender to the touch and having 5 pounds of silicone hanging on it is just not acceptable.  I tell you, the stars have spoken... I am just not meant to have boobs.

But I didn't realize how much it hurt until after I wore it for more than a few minutes, so I went on with my purchase.

Fake Boobs = 2 Car Payments

Here is the kicker. How much would you pay for one fake boob bra insert?  I was thinking maybe $100.  Anything you buy from a store attached to a doctor's office has to have a boutique price, right?  Guess again. Try $300 per boob.  Plus the special bra.  Now I would have walked right out, however the woman at the boutique told me insurance covers it.  Since I have hit my annual out of pocket maximum, my insurance would cover 100% of the cost. If I hadn't, insurance would cover 90% of the cost. Not bad. First, I am thankful that I have insurance that covers these things. Secondly, what the hell is that boob filled with, copper? What in the world could make this cost so much? Of course that's exactly what I asked.  The woman says "Well, silcone is very expensive". The heck it is. I can go to Home Depot and buy a tube of silicone caulk for under $10. Isn't Silicone still made of Silicon which comprises over 90% of the Earth's crust? (And I remembered that from 10th grade Earth Science! I just had to ask Wikipedia to make sure I was on top of my game!)  What in the world can they be doing to this stuff to make it worth $300?  What's worse is that aren't we as a country suffering a health care crisis? Aren't 18.9% of Americans without health insurance?  This is complete robbery of not only the health insurance companies but the women who don't have health insurance. I am not an expert on the subject, but I think that the only reason these boobs are $300 is because they know the health insurance companies will pay for it. That is wrong. I wish I had a better understanding of our health care system so I could speak more intelligently about it. But I tell you this really frosted my cookies... I was pissed off all week about it. Like women with breast cancer who don't have health insurance, or don't have great health insurance, aren't stressed out enough, now they can't have boobs?  Is there any limit to how much these women can be tortured????  If I were richer, I would start a fund for uninsured women to get free boobs.

So it was bittersweet when I left the boutique with two new boobs and a pretty bra with a rhinestone on it. I actually felt like a woman again.  Until I got home after wearing these new boobs for just an hour and had that bra off before I had my shoes off.  Well, they are a nice thing to have for when I am wearing a nice dress or have a vendor in town for a visit.  Some women wear uncomfortable shoes. I wear uncomfortable boobs. It won't be forever, and maybe someday this mediport won't be so sensitive and then I can wear them more often. For now, flat is fabulous!

But Wait, I Spoke Too Soon! 

So as I mentioned I was very upset for an entire week about how the makers of these silicone breast prosthesis rape the health insurance companies, and women without health insurance. I also mentioned that if I was rich, I would fund a program to get these to women for free.  Well, I learned that such a fund does exist already! I was recently advised to call the American Cancer Society.  I called them about their Look Good, Feel Better Program but while I was on the phone with them, I learned about all the programs they have to offer. As it turns out, the ACS offers free breast prosthetics to women with breast cancer.  All they want to know is what size you wear and the boobs are in the mail! In addition, breast cancer patients are entitled to a free wig! And to think I spent over $300 on wigs already.  What's more, is that they are NICE wigs! When they first told me I could get a free wig I assumed it would be a poor quality or they would have 3 styles to choose from. When I went to the ACS office on Audobon Parkway, just five minutes from my office, I was surprised to see they had more than 30 styles to choose from in multiple colors and styles. All the wigs are Paula Young brand which are on the cheaper side price wise, but I am pleasantly surprised to find that they are comfortable, light, and look fantastic! What's better is that it's free!

My New FREE Wig from American Cancer Society - "Meg"

The Look Good, Feel Better program is a cosmetology class geared specifically towards women going through chemotherapy.  It gives the patient high quality makeup and teaches them to use it to highlight their features and learn to do techniques they hadn't had to do before, such as applying eyelashes and drawing on eyebrows.  I am not scheduled for my class until June 24th, but I am excited for it and will update you later.

To get in touch with your local chapter of the American Cancer Society, you can visit their website at www.cancer.org or go to the Program Finder on the Look Good, Feel Better website at http://lookgoodfeelbetter.org/programs. 

8 Days and 7 Nights - The Aftermath of Chemotherapy

As I mentioned before, receiving a chemotherapy treatment and the Neulasta shot a day later was really no big deal.  It wasn't particularly painful and I wasn't really sore or tired in the 2 days following the initial chemotherapy treatment. I was told that every person's body handles chemotherapy differently, so I thought I was just one of those lucky people who really wasn't affected by all the possible side effects of the chemotherapy drugs.  I was wrong.

Hello Nausea

The word 'nausea' and 'nauseous' used to be 2 words that I was most likely to misspell for most of my life.  I have overcome that challenge.  I wrote those words so many times over the past 8 days that I can spell it in my sleep.... on Facebook, on Emails, on text messages, in chat rooms.  The story of my life for the foreseeable future - nausea. 

I have been nauseous before. I have had 2 babies and was nauseous for the first 12 weeks for each of them.  But it wasn't really 12 weeks. For each of them, on the day I was officially 12 weeks pregnant the nausea would end.  The first 4 weeks of each pregnancy I didn't know I was pregnant yet, and never experienced the nausea until I found out.  Almost within a day of finding out I was pregnant I would start with the morning sickness. For this reason, I had convinced myself that morning sickness was in my head.  I could handle that. This was different.  I kept asking myself why I couldn't tolerate this nausea. It wasn't that bad when I was pregnant. Why is it bad now? 

When I was pregnant, I could ward off nausea by eating something.  This is why I gained weight when I was pregnant -not because I had a baby growing inside of me, but because for 8 weeks I was eating constantly trying to not get sick.  So I tried this now.  Like when I was pregnant, eating helped me feel better.  But AS SOON as I swallowed, I was sick again. I was going to double in weight by the time this ordeal was over.

I was given some great advice on how to control this nausea. I was told to eat ginger. I love ginger. I don't like ginger while I am on chemo. In fact, the smell of it makes my nausea worse.  I was told to try ginger snaps. I don't like crunchy cookies so I ordered up a special batch of chewy ginger snaps from my one and only Cha-Cha Tina (my Mom's best friend.... I think 'Cha-Cha' means Aunt in some language).  I had one and felt better! So I had a second one and felt sick again. I was told to eat lemon candy and my 'cousin' Jenna brought me a whole bag of them! (cousin is in quotes because I don't think we are actually related in any way, but my family has friends that are so close and so loved, they might as well be family).  I ate a lemon candy and was exhilarated! I ate a second one and got sick again.  So what I learned is that if I find something that makes me feel better, STOP! Enjoy feeling better and don't push it. 

When I say I got sick, let me be clear that I at no time vomited. That would actually make me feel better I think. Normal nausea is a building tension you feel before you puke. The puking is like the orgasm of the nausea... the climax. Then afterwards, you feel better. Relieved.  Ready to move on.  This nausea had no climax. It was bound to drive me to death at some point.  When I was able to fall asleep, I would get relief only to wake up, sit up, and start the nausea all over again. If I woke up to use the bathroom in the middle of the night, I was nauseous.

Nothing was appetizing.  The smell of food would launch warfare on my stomach. I would gag occasionally for <gag> no reason and with no outcome. I would be on the phone and <gag> mid sentence just start gagging. But it would be unceremonious and I would pick up my sentence right where I left off without so much as an apology for my gag, much to the disgust of the person I was talking to. Sometimes I would be very comfortable on my recliner and when I felt this way I couldn't move. If I so much as turned my head to look at the person talking to me, the nausea would return. 

Before I left the chemo treatment on Tuesday, the nurse gave me a script for Prochloperazine for nausea. I took this immediately, first thing on Thursday morning. It did not really help the nausea, it just helped the gagging. So I called the doctor Thursday afternoon. The doctor called me back Friday to see if it was getting better and I told them it had not, so they called me in Zofran. They told me to take the Zofran AND the Prochlorperazine at the same time because they both target a different neurotransmitter. I thought 2 different anti-nausea meds at the same time has to work, right? Not.  Luckily for me, Saturday came and the nausea lightened a bit. I still felt like crap if I moved, but it was better. At this point, it was like pregnancy nausea. Maybe a little worse, but worlds better than Thursday and Friday. 

Finally on Thursday, 8 days after my Neulasta shot, the nausea got to the point where I could function. Just in time to see the doctor for a checkup.

Thanksgiving Turkey

The day after the Neulasta shot, I got a symptom less common than the nausea, but just as uncomfortable.  Some people report a metallic taste in their mouth. I never got that, but I did get a salty taste in my mouth. I always felt like I just gargled with salt water and was extremely thirsty. I just couldn't get enough water, so I drank it. Now I usually drink a ton of water anyway... usually 5 or 6 refills of my 32 ounce Weight Watchers mug.  And I was more thirsty than usual.  Usually when I drink all my water, it comes back out again.  Now it didn't.  But I was losing weight.  Where was all the water going? I'll tell you where, it was collecting in a large pocket right below my ribs where my diaphragm was.  It was very uncomfortable and more importantly I looked ridiculous.  Imagine a woman with no breasts whatsoever and now, thanks to my failed DIEP transplant, no lower abdomen. I was completely flat from neck to pelvis... except for a kidney shaped protrusion halfway between my chest and my belly.  I looked like I was ready to be stuffed and basted for Thanksgiving. 

I called the doctor about this strange shaped protrusion I had coming out of me on Friday. They didn't seem to care so much that I looked deformed as they were about the water going in not coming back out.  A couple things they mentioned included electrolyte imbalance, diabetes, dehydration, among others. They had me come right in for blood tests.  Of course my blood tests came back completely normal so the nurse told me not to worry about my new body shape and just keep chugging along. 

Luckily for me, come Saturday morning what went in finally came out and my shape returned to normal. I continued to be thirsty for quite a while though, which is no big deal because I love water more than I love wine. This is especially a good thing because the smell of wine was beginning to make me sick. 

A Saved Trip to the ER

When I returned to work on Monday, 7 days after my chemo treatment, my nausea was being controlled so I was able to get some work done. I say 'some' because it is extremely hard to focus on

one task with nausea, even if it is controlled.  I was controlling the nausea with animal crackers, meds, and oranges.  I was told to try some ginger ale so I brought a liter of it to work with me and drank it while I had my meetings.  This was a mistake. Just as ginger snaps and lemon candy bothered me when I tried more than 1, the ginger ale really bothered me. I started to think that maybe it was the sugar that was triggering the severe nausea.  The ginger ale did in fact make me more nauseous but it also triggered a much more acute symptom - reflux.  I drank one glass of ginger ale on Monday afternoon and for the rest of the day I couldn't eat anything without it coming up and burning the back of my throat. Water would cause worse reflux so I stopped drinking water and started getting very thirsty. 

When I went to bed Monday night, I began getting acute stomach pains.  Short lived, super sharp pains in my lower abdomen woke me from a sound sleep all night long. No doubt you know what these pains feel like.  If you have ever been warned of an oncoming poop with stomach pains, or been notified that you haven't taken a poop in too long with stomach pains, you know what this feels like.  So I spent Monday evening walking from the bed to the bathroom.  But it was all to no avail. Neither of these 2 situations applied to me, I was just getting the pains. 

When 7am Tuesday came I was as tired as I used to be when I had babies nursing all night or worse, puking all night. And I still had nausea and reflux. Tuesday really flipping sucked. The reflux and nausea continued throughout the day and even though I was eating every few hours, my weight was going down. Hooray! Finally something good was coming out of this misery!

Tuesday night I remember sleeping without pain or incident and I think it was from sheer exhaustion. I couldn't have stayed awake to experience pain if I tried.  And I think that because Wednesday the pain picked up right where Monday night left off.  I experienced sharp stomach pains, reflux, and nausea.  I was on a strict regime of my anti-nausea meds, Loritabs for my chest incision pain, oranges for the nausea, and Tums for the reflux.  I had some Moe's chips and queso on Wednesday because I was so nauseous and it was free! It helped the nausea for almost 2 hours which was a welcome break.  Unfortunately, none of the other pain subsided. The Loritabs were barely working anymore (the fact that I forgot to bring them with me to work didn't help matters. They can't work if you don't take them).  The Tums weren't helping the reflux.  The abdominal pains were getting more frequent and there was nothing I could do to help those except get on my hands and knees and rock back and forth. 

Wednesday night was like Monday night continued. I rocked on my hands and knees most of the night trying to control the sharp abdominal pain.  At one point at around 4am I actually started to cry.  There was no way that this was normal or good.  I contemplated driving myself to the ER, but I have been there before. I will sit there in just as much pain as I was in at that moment for the next 8 hours and the end result, if I even get seen, will be that there is nothing wrong.  I had an appointment that day at 1pm with Dr. Dougherty to review side effects. If I was going to sit in the ER for 8 hours fruitlessly, I would wait 9 hours to see a doctor who could actually help me.

Thursday was another useless day. When you are operating on about 3 hours of sleep, feel like puking, and end up crippled over in pain every 30-40 minutes, you can't get much done. I couldn't wait to see the doctor.  When I got there, they found that I had lost 6 pounds since the Friday before.  Even though this thrilled me, it did not amuse Doctor Sullivan, Doctor Dougherty's nurse practitioner. (Yes, I know she is not a certified doctor but I have just as much if not more respect for NP's as I do doctors).  Nancy Sullivan ordered me to get hooked up to an IV right away for rehydration.  I didn't think I was dehydrated, especially since I drank so much water. It also concerned her that I was still nauseous after 10 days. She included some Zofran in that IV, to make sure it was getting into my system and staying there. This ruined my whole afternoon because I was in the infusion room, with an IV hooked to my mediport (UGH! I HATE MY MEDIPORT AND IT FLIPPING KILLS!) for the whole afternoon. I almost missed Brandon's last basketball game. My 1:00 appointment kept me there until 5:45!

While I was there, Doc Sullivan ordered an ab X-ray on me.  The sharp pains were troublesome to her, especially since they didn't start until day 8. The pains along with the water retention I had the week before lead her to believe I may have a bowel obstruction. I don't know exactly how the bowel can be obstructed, but I really didn't want to find out.

I got the Xray results right away, and the results were surprising.  Doc Sullivan told me that the Xray showed no obstructions, but instead an irregular gas pattern. First, I was shocked that you could see such things with an Xray. I thought Xrays were to see bones?  Why did they use an X-ray to look for a soft tissue obstruction in the first place?  And how in the world did they see a gas pattern with an X-day and... Wait a second.... I got an X-ray to tell me that I needed to fart really bad? Isn't that what they mean by 'irregular gas pattern'?  Are you kidding me?  Thank GOD that I didn't go to the ER the night before. Can you imagine my fury and embarrassment if I sat there for 8 hours in pain just for the ER doctor to tell me that I needed to fart???  Doc Sullivan gave me a script for reflux, which is very common in chemo (who knew) and a digestive aid to cut down on the gas pains. I still can't believe it.  I guess when you have cancer, they take everything very seriously. 

A Glorious Day

I woke up Friday a brand new woman! All traces of the nausea were gone.  All my stomach pains were gone. I had gained 5 of those 6 pounds I lost back. Easy go, easy come back I guess.  I had energy to spare.  I was motivated to get projects done.  I slept well.  And most of all, I was HUNGRY!  I would have eaten anything, even liver.  I went out to lunch at The Grapevine and enjoyed a huge lunch of eggplant parmesan, spaghetti, and a big salad with croutons and ranch dressing. This may sound like just a lunch out to you, but at the time it was the best meal I had eaten in my whole life! I went home and wanted to clean, and work on my blog, and make jewelry, and clean out my closet, and shop. If I ever did cocaine, I think this is what it would feel like. Maybe I was dehydrated. The IV fluids and Zofran not only helped me get rid of the nausea but infused me with energy! The silver lining of chemotherapy... FINALLY!

So, going forward we are going to adjust my treatment a bit.  Day one will be chemo. Day two after my Neulasta treatment I will be getting 1000ml of saline and Zofran via IV. Then I will come back again on day 3 for another 1000ml of saline and Zofran.  Doc Sullivan believes that my problem is that the chemo drugs were not moving through my system fast enough... they were hanging around and reaping havoc. So the forced fluids and going to force it through my veins and right back out again.  In addition, I have been given a new anti-nausea medication to take at home called Marinol.  Marinol sounds fun, it is a synthetic version of the active ingredient THC which is found in Marijuana. I have the Marinol pills now, but haven't had to try them yet because the nausea went away after Thursday's IV session.  The good news is that I have them for my next treatment and I am hoping this time, I can head off the nausea before it gets that bad. 

My First Chemo Treatment - Not that bad

On Tuesday April 2nd, I had my first of 8 chemotherapy treatments. My husband accompanied me to the 2 hour long session because we were told that we would be given a lot of information during the first session so he wanted to make sure he didn't miss anything.

Arriving for Chemo

Upon entering the infusion room I noticed that it resembled a strange kind of spa. There was a water cooler, a table set up with coffee, tea, and pastries. There was a semi-circle reception desk in the center of a large room which seemed to curve around the desk. Along the outside of the curved room were smaller 'stalls' with a wall between each.  In each stall was a recliner, 2 upright chairs like you might find in a doctors waiting area, a small end table, and a 24in LCD TV.  Between each of the stalls was a private bathroom with a door to each stall.  The nurses sat at the semi-circle desk watching vitals and keeping an eye on all the stalls' inhabitants. What I noticed most was that the room behind the desk, where I would be looking, was a very pale purple, one of my favorite colors, and seemed soft and warm. Maybe this wouldn't be so bad.

The nurse escorted me to my private stall and told me to get comfortable in the recliner. She offered me a blanket and a pillow. The recliner was somewhat hard so I took the pillow but declined the blanket because it was nice and warm in the room.  Rory sat on the waiting room chair right next to me. The nurse continued to tell me about what she was about to do.

Preparing the Mediport

The first thing they did was numb my mediport. She did this by spraying this weird substance on my skin where the mediport is for 10 seconds. If you have ever used a liquid wart remover that froze the wart with liquid nitrogen, you probably know what this stuff feels like. It basically froze the mediport. My job was to say when it hurt too bad to take the pain.  I lasted about 10 seconds which is exactly how long the instructions say to spray it for.   The next step would be to tap a needle into my mediport so I am glad I made it the whole 10 seconds.

Before we go on, let me just remind you that I hate my mediport.  I lie in bed in night and feel it throbbing. Other friends of mine who are cancer survivors tell me how much they loved their mediports. I do not have this type of relationship.  I would take a needle in my arm 10 times over tapping my mediport once. I swear they installed it on a nerve, or used a nerve to tie it into place.  I don't know if that is possible, but if it is, that's what they did.

To tap my mediport, the nurse basically puts what looks like a fat thumb tack into my mediport which is right below the skin.  The thumb tack connects via tubing to an entry way, all medicines can either be screwed into the entry way as in the case of IV drugs, or a syringe can puncture the entry way for smaller dose medicines. Luckily for me it was mostly numb from the liquid nitrogen (or whatever that stuff was) but I still felt it.  They cut off my boobs (twice), took 1/4 of my stomach off, and yanked my lymphatic system out of my armpits and I was good. But heaven help you if you touch my mediport... I am likely to hit to ceiling. That is by far my most sensitive place. Apparently the liquid nitrogen numbing agent is optional. That is an option I will never pass up.

My mediport after it was tapped

Once my mediport was connected to the tubing, I was ready to begin.


Step 1 - Emend, an Anti Nausea

The first drug to be administered via my mediport was Emend which is an anti-nausea medicine. They gave that to me first because the real chemo drugs were about 100% likely to make me nauseas.  It was imperative that I not vomit, or at least keep it to a minimum. If I got dehydrated I would have to come back for fluids or possibly be admitted to the hospital. 

 Step 2 - Decadron - another anti-nausea

The second drug they pushed into my mediport was Decadron, a steroidal anti-nausea medicine. I asked the nurse why I needed 2 different anti-nausea medicines at the same time. She told me each one gets rid of nausea by blocking a different neurotransmitter. It would turn out that I really needed this and then some.

Step 3 - Aloxi - yet another anti-nausea

The third drug was a third and final anti-nausea medication. Aloxi is yet another anti-nausea drug which blocks the actions of specific neurotransmitters. What is the difference between these 3? I have no idea, all I know is none of them worked very well.

Step 4 - Some fluids...

After these 3 anti-nausea medications, the nurse put me on some NaCl (saline) just to keep my hydrated.

Step 5 - Cytoxan

The Cytoxan was the first of two of the real chemo drugs. The Cytoxan was a small envelope of medicine that was connected to my mediport and let to drip for about 20 minutes.

Step 6 - Red Devil

The last chemo drug I received was the Adriamycin. The nurse told me that they call this drug the red devil.  If you saw the needle you would know why. First of all, it's terrifying. At this moment I actually thanked God for my mediport.  Secondly, this is the drug that causes all the havoc.  Adriamycin is what causes the nausea. It is also what will eventually claim my hair. I decided then that I hated Adriamycin. Even now writing this, just seeing the word makes me nauseas.

Adriamycin - The Red Devil

 
Step 7 - Rehydrate

The last step of chemotherapy was hydration. It was important that these drugs moved through my body quickly and didn't stay in one place too long.  For this, I needed to remain very well hydrated. Before I left, I had to receive 100 mL of saline to stay hydrated and push the medicines through.  At this point I understood why I needed the blanket. They don't warm up these fluids before they put them into you. I had what felt like ice cold water pulsing through my veins. It didn't take long before I was completely freezing.  Thank you for the blankie!

When I was all pumped up with fluids, I felt better than OK. I was cold, but I felt great! It felt amazing to have them remove the tap from the mediport and I was full of energy (probably the steroids). I went home and ate a great dinner, worked on my business, cleaned the house, and still had some energy to spare. Overall, it was comfortable, not painful, and not really a negative experience.

Day 2 - Neulasta

Within 24 hours of receiving chemotherapy, a follow up shot is given of Neulasta. The Neulasta sends your white blood cells into overdrive. Even if you never knew anyone with cancer, I am sure you heard that cancer patients are very vulnerable to sickness because they are immunosuppressed.  The Neulasta helps prevent the immunosuppression by telling your body to make up to 10x its normal white blood count.  This will make your body feel like you have a cold or the flu, so achiness, soreness, and fever are likely. The white blood cells are made in your bone marrow, so bone pain is likely.

The Neulasta is not administered through the mediport, it is given as a prick in the arm in the upper bicep. If they were looking for muscle there they were going to be disappointed.  Any muscle tone I once had dissolved with a month recovery at home.

I went back on Wednesday April 3rd for my Neulasta shot expecting to have flu-like symptoms by the end of the day. Much to my surprise, I never got the flu-like symptoms.

Day 3 - The shit starts

My 2 days of receiving chemo were both positive experiences. I was convinced that I was blessed and was going to miss the bulk of the scary side effects. For the most part, I was right. I never got bone pain, I never got flu-like symptoms. I was told to expect a bad, metallic taste in my mouth... I never got that. I was told I might puke... that never happened (unfortunately).  You might say that I lucked out.. I only really got one side effect - NAUSEA.

Guest Post - Keeping Hope Alive: My Experience as a Caregiver

The following post was written by Cameron Von St. James. Cameron is the husband to Heather, a Mesothelioma survivor. This is his story about how becoming a caregiver to someone with cancer changed his life.

Nothing in life can prepare you for the moment when you become a caregiver for someone with cancer. I remember the day it happened to me. On November 21, 2005, my wife was diagnosed with malignant pleural mesothelioma, and our lives plunged into chaos. Just over three months earlier, we were blessed by the birth of our only child, Lily. Now, instead of preparing joyfully for her first Christmas, we were fighting a battle to save Heather’s life and keep our family intact.

Cameron, Lily, and Heather Von St. James

 

 

 

The responsibilities of being a caregiver for a cancer patient fell upon me immediately. When the doctor gave us the news, he explained a little about the disease. Then he explained our treatment options. Heather could be treated at a local university hospital or seek treatment in a regional facility where great oncology work was being done. Neither of these facilities, however, had a dedicated mesothelioma program. The final option was to fly to Boston for treatment under the direction of one of the world’s leading mesothelioma physicians. I looked at Heather, expecting her to respond in some way. She remained silent, but her face screamed for someone to help her. Immediately, I blurted out, “Get us to Boston.” It was the first of many difficult decisions I would have to help make concerning my wife’s care during this time.

  

Over the next two months, chaos ensued. Heather had to quit her full-time job, and I was only able to work part time while caring for her and Lily. Meanwhile, I also needed to make travel arrangements, find care for Lily while Heather underwent treatment in Boston and more. Along with the overwhelmingly long list of things to do, I found myself facing my darkest fears. What if we spent all our money on treatment only for Heather to die anyway? Would I be left alone, a broke widower trying to raise a little girl? More than once, I sank to the floor and sobbed, but that didn’t last long. I needed to be strong for Heather. I never once let her see how hard this was for me. She needed a source of strength, not more fear.

  

Every time things seemed impossible, help would come. It came from family, friends and complete strangers. Sometimes the help was financial. Other times encouraging words gave me the strength to carry on. I learned the importance of accepting help from others. In fact, one of the most important pieces of advice I could give to those who find themselves in this situation is to always accept the help that is available. I learned the hard way that there is no room for pride when you’re battling cancer. Use all of your resources. This will help you make it through the most difficult days.

 

Being a caregiver for a cancer patient is difficult. You will experience stress, uncertainty and a barrage of difficult emotions. Unlike a difficult job or tough classes in school, this responsibility is not something from which you can simply walk away. Allow yourself to feel negative emotions, but do not allow yourself to be overcome by them. Hold onto hope, and continue to use every resource available to help you along the way.

 

Our lives didn’t return to normal for years. My wife underwent major mesothelioma surgery, chemotherapy and radiation over the following months. Finally, despite the odds against her, she was declared cancer free and remains so to this day.

When our daughter was two years old, I returned to school while continuing to work full time. I graduated from my studies in information technology with high honors, and my class selected me as the speaker for commencement. I remember speaking of my wife’s cancer diagnosis. Had anyone asked on that day, receiving the diagnosis, where I would be in five years, I would never have guessed that I would be graduating, having accomplished a lifelong dream and celebrating it with my healthy wife and daughter. Never give up hope, and always keep fighting for the ones you love.

 

Cameron is a member of the Mesothelioma Cancer Alliance. To follow Cameron's story, visit his blog at ://www.mesothelioma.com/blog/authors/cameron/