Hair today, gone tomorrow....my secret is out

My hair barely made it to the second round of chemo. Thursday, July 25 I was able to go to chemo with hair even though it had started to come out when I combed it that morning. However, Friday morning in the shower as I wet it and ran my hands over the top, I had a fistful of hair left behind. Friday at 10:30am I got my head shaved. I had read a blog entry from another woman with breast cancer who said nothing can prepare you to lose your hair. She was correct - as much preparation as I had done in buying scarves and caps for when my time would come, I was still not prepared and it was indeed a shock.

Since then, I have been trying to experiment with scarves as the thought of a wig in August just sounds horrible to me. Some scarves have worked, and others have failed. I find the non-slippery, long, rectangular head scarves to be easier to tie around my "Uncle Fester" looking head! I highly recommend having a fabric cap for the days you just don't want to deal with tying a head scarf; they are easy to pull on and go. Put on a pair of dangle earrings, some lip gloss and it's a quick out-the-door look.

One thing I have resented more than anything has been losing my hair. My secret is now out. When I had hair, no one knew I was sick to look at me, and that was fine; it was normalcy for the time being and I knew what would eventually come. Another resentment I have was a coworker who posted a picture of me and her, both in headscarves as she was being supportive of my cause, to her Facebook page and she tagged me. Ouch! When she asked me if she could have a picture, I had no idea she would post it in such a public fashion. I was absolutely horrified to see the photo of me in my cap on Friday - the first day I didn't have hair and before I could get used to wearing a cap - show up on my Facebook page when I had not yet gone public to all my friends and even some family members. Well, that certainly took my secret and put it out there for the world to see in a way I wasn't prepared and didn't authorize. I understand she did it out of support, but I would caution and urge everyone - please ASK someone if you can OUT them on such a social forum before doing so. By the time I realized she had posted the photo and tagged me, too many people had already seen and liked the photo for me to feel like I could request it taken down. I feel violated to this day. This is MY news to share with the world or whomever I damn well pleased - not anyone else's.

Lesson learned......no photos!

Chemo weekend #1

July 15, 2013

Thursday, July 11 was my first chemo treatment. I have felt fine since then with just a slight bit of dizziness on Friday morning when I awoke and a very slight headache on Saturday, Sunday and Monday. I have been keeping on top of my anti-nausea medicine as I don't wish to begin feeling nauseous. Appetite is down slightly (which is just fine - I could stand to lose a few pounds....), but food for the most part still tastes the same. No mouth sores, gastrointestinal issues, or other unpleasant side effects from the chemo yet that I had planned on experiencing so I'm thrilled. Now, if every treatment would go this smooth, I will be a happy lady. I'm not holding my breath - I'm sure at some point the amount of drugs in my body will start causing more havoc than good. Wait for it.....wait for it.....

Hello Red Devil....

July 11, 2013

I will be exactly 7 weeks post op tomorrow, and had my first round of chemo drugs this morning. It's hard to believe it's been that long, and in other ways the time seems to be flying by; I hope the feeling of time flying by continues, but only for the next two years....then it can slow down again!

I was up at 6:30, but began thinking of all the unknown today and procrastinated in bed (got on computer, kept laying in bed hitting the snooze button) until almost 7:30. I finally decided it was time to face the day and get in the shower already. Worked until 10:30, then bid farewell to the coworkers extraordinaire to get to the clinic. Upon arrival I checked in at the front desk and went upstairs. Didn't have to wait long to get called back and then we did the weight thing (ugh....) and she asked if I wanted a room with a bed or a chair. Upon looking at the chair and how small the rooms are, I chose the chair as I knew I might have visitors and there would be more room. Mom came and joined me just as I was getting ready to give her a call to try and tell her exactly what room I was in and found me before anything got started. They had only taken my vitals (blood pressure, temperature and pulse/oxygen). We sat for probably 30 minutes and my nurse came in to inform that they were looking at orders and waiting on the meds to be mixed and it shouldn't be much longer.

First up was inserting a needle into my port. I had put a small dab of the EMLA cream I had left over from surgery on a bandaide at work around 9am as to numb the area a little so it would hurt less. Mom was smart and mentioned the freeze cream they have and so my nurse Heather shot me for a good 10-15 seconds with the freeze cream. Then, she inserted the needle into the port and pulled on the syringe for the flash of blood. Nothing. So, she opened a syringe of saline and hooked that one up and flushed the line, and flash - there was blood! (Yes, this is good! It means the port was working and just needed some prodding; I had not had anyone do anything with it until today.) The freeze cream is amazing! Never felt a thing going in and no pain whatsoever tonight from the IV.

Next up, administering half a bag of saline through the IV/port before any of the chemo drugs. This took maybe 20 minutes or so. But before any of the chemo drugs were administered, they gave me two different drugs for nausea via IV.  Each one took about 20 minutes.

And then.....it was Adriamycin, a.k.a. "Red Devil"! This is THE mother of chemo drugs that I will be receiving. The nurse administered this to me via push. A "push" means the medication is in a syringe and they literally sit next to you and upon hooking the syringe into your IV, they gently apply pressure and "push" the medicine in slowly, as opposed to the drip of an IV. I received three large syringes (think 1 inch diameter and about 5-6 inches long). They had me suck a popsicle (or ice works too) while it's being pushed to reduce the chance/occurrence/severity of mouth sores. While it will deliver the gifts of (potential) nausea and heart problems, along with drowsiness, fatigue, hair loss, diarrhea, red urine, and will lower my white and red blood cell counts as it attacks not only the cancer cells but other rapidly dividing cells in my body, I must remember that in the end it will make me better. This will be a journey. I will travel this yellow brick road and kick some red devil ass along the way!

Last but not least was Cytoxan. This was another bag hung with the saline and given over 90 minutes. I turned on the TV only briefly to watch maybe 30 minutes of Ellen. The rest of the time was spent talking to mom and/or interacting with the nurses who came to stop the beeping and change out the four bags of fluid I was given today. It was great to see Sally, my moms supervisor and have a chance to speak to her for a short while. I also got to meet Ralph who works in the pharmacy and mixes drugs; while he didn't personally mix mine, he was on top of it! Oh Ralph - loved his German brogue and hearing about his granddaughter and seeing his adorable picture of her.

Once the Cytoxan was finished I was done. The nurse came in and removed the needle from my port, which didn't hurt at all and was a cinch. She reminded me of the anti-nausea prescriptions at the pharmacy and insisted that if I had any problems or side affects they warned me about, I was to call ASAP. Mom and I gathered my stuff, and we were free! Total ordeal took from 11am to just after 4pm. I was at Walgreens about 4:20 buying my meds and drinks and then to my parents for dinner. Fantastic bacon, lettuce and tomato sandwich with a little bit of potato salad and just a little bit of my new favorite ice cream from Hudsonville for desert.

Now, sleep so I can hopefully go to work tomorrow (Friday) morning for a little while before my afternoon appointments. This weekend will be taking it easy and hopefully feeling somewhat decent given the circumstances.

Return to work

Monday, June 8

Today was my first day back since having a left mastectomy on May 24. It was weird; as if nothing had changed and everything changed. My co-workers are the best and have been super supportive so far. I walked around the corner to find two signs on the door of our suite of offices that read "Welcome Back Sarah" and "We missed you!", and two more signs on the door of my office that said, "Welcome Sarah" and "Michael Missed You!" (Michael Phelps = I'm a huge fan and have his Kellogg's poster above my desk at work!). They brought donuts and it was great to sit in the middle of the suite and catch up after being gone for six weeks. Took me a while to get signed onto my computer and had to reset some of my passwords that had expired in that time, but I finally got going enough that I think today wasn't a total waste. Ha!

I start chemo on Thursday, July 11 at 11:00a.m. Not sure what to expect, so that has me nervous, but I'm sure I'll do fine. I think the hardest part of this whole process is not being able to make plans. I want to do so much, but have no idea what the future holds; I can't very well make plans, as I don't know if I'll feel well, be sick, be ok, etc. It sux. Day by day, no future plans being made at this time.

My new friend Judy has second round of surgery tomorrow to have more lymph nodes removed. I pray she does well and feels decent when it's over. Her armpit is going to be sore again, and that sux as she was just beginning to feel better. She's strong and will get through it and we are going to support each other. I like to think of her as my second mom! :) Her sons graduated a couple years before me and a couple years after me. 

3 week recovery

Three weeks ago today, I had surgery. I still have one drain (the other fell out in the shower just over a week post-op). I feel like I have a large rubberband in my left armpit every time I lift my arm. Sometimes, I have to almost rotate my arm in order to lift it; and even then, it feels like the rubberband is stretching and is about to snap.

I have an appointment today, and was hopeful the drain could be removed - not going to happen. I'm beginning to think it will never be removed. I'm slowly becoming more independent once again; driving myself to my appointments, running small errands, trying to help out more with housework and cooking dinner. I'm enjoying my time off from work so far, but beginning to look forward to returning. I'm not yet sure when I'll begin chemotherapy; maybe that will be determined today at my appointment, or possibly next week. I had an echocardiogram Wednesday morning and while it was basically a sono of my heart, it was painful to do post-op. The tech (not realizing I had a left side mastectomy) asked me to lie on my left side with my arm above my head. Ok, these are two things I can't WAIT to do! As a side sleeper, not being able to sleep on my left side is not making me happy. I can sleep on my right side, but it's not as comfortable as it used to be, and I have to be careful of the drain coming out of my left side, and make sure it doesn't pull or tug. So, during the echo, we modified the position to what I could do comfortably. I also had to have contrast, so a nurse came in and give me an IV for the contrast. I also had to pee in a cup for a pregnancy test, which was clearly going to be negative; what do they think I'm doing during recovery for the past three weeks!? So humiliating and unfair that guys don't have to disclose the last time they got lucky by peeing in a cup when they go to the doctor!

Just trying to find humorous ways to pass my time as of now. I have spent more time on Facebook in the last three weeks than I probably have the last two years. Hopefully soon I can occupy my time in a much better capacity - work! :)

Surgery was Friday, May 24 at 10am. I was in surgery for about 4 hours and recovery for 2 hours, then taken to the 7th floor for my stay in the hospital. The morning of surgery I had to put EMLA cream around the nipple of my left breast and saran wrap over the top for approximately an hour to numb the area. I had to be in nuclear medicine at 7am where they injected me with a radioactive dye and scanned the area several times. The injections hurt a lot more than the aspiration procedure, the dye stung and burned going in, but thankfully it was short lived. A second set of scans needed to be performed, and then I was on my way to the second floor, One Day Surgery department to check in at about 8:40am. My parents ran downstairs to grab a bite for breakfast and I was called back to get prepped for surgery. The usual vital signs taken, questions asked, urine test to confirm I wasn't pregnant, etc. and then my parents were allowed to come back before I was wheeled to the operating room. Kissed my mom goodbye and as we were rolling down the hallway, I lost it. Started bawling. Pulled my gown over my head as I sobbed all the way down the hallway and into the room. The nurses with me in the operating room were great. One gave me a hug and kept reassuring me that I was in good hands. I knew I was in good hands, I just didn't want to be there at that moment. I started thinking of what was coming and that was so unpleasant that I think I freaked myself out. I didn't want to have a mastectomy, I wanted to be at work. I didn't want to think about the recovery period and the start of chemotherapy, I wanted to be going through the motions of my everyday life, as boring as it is at times.

I woke up in the recovery room and it wasn't long before I was wheeled out to my room. I remember feeling incredibly tired. It was hard to open my eyes and appear awake, but I could hear and understand everything happening around me. I remember opening my eyes enough to see being wheeled around the corner of the unit and a guy and girl standing in the hallway. I remember thinking, "geeze, don't get out of the way for the person driving my bed...just stand there gawking at us." I remember being pushed past a door, then backed into that room and looking over as the same guy looked at me. I remember hearing, "Well, there goes the private room." I remember the nurses coming in and hooking up my IV next to my bed, taking my vitals and putting a pulse ox on my finger which monitored my heart rate and oxygen saturation. I remember the hallway guy walking past my bed and going to the patient on the other side of the pulled curtain (I never saw my roommate) and saying to her, "Well, you get a roommate. But she looks young. Maybe she'll be better than the last one." and hearing her reply, "Well, it can't be worse." and their ensuing conversation about her previous roommate, who as I understand from their discussion had terrible gas from a stomach or bowel procedure, and how awful they thought it was having her as a roommate. I also remember thinking how little privacy those damn curtains really provide between the beds. There were several more times I remember my roommate and her husbands disdain of my presence by the comments they made. I am sure they thought I was asleep and didn't hear a word they said, but I heard everything they said and even picked up on their disgust that "she" no longer had her own room.

Later that evening, the nurses came in and asked me to dangle off the side of the bed to work out some of the anesthesia. They helped me up to sit on the side of my bed as Dr. Ray, my surgeon came in to talk to the woman on the other side of the curtain. Those curtains that don't provide the least bit of privacy. As I sit, with my curtain drawn around me, with a binder around my chest and a sheet up to my stomach, with my feet dangling off the side of the bed, I learned that the woman on the other side of that curtain was in way worse shape than I ever hope to be. Pancreatic, liver and kidney cancer was apparently her diagnosis and she was having a Whipple procedure on Wednesday. Having worked in the ER, I knew of the Whipple, but didn't know exactly what it was; I just remember it's a pretty specialized procedure and not something you necessarily want to have to endure. Dr. Ray left and then came back a few minutes later to tell her that I was also his patient. He came into my curtain and was pleased to see me sitting on the side of the bed. He informed me that she was also his patient and we should talk to each other. I remember wondering at that moment if he knew how she and her husband had spoken about me, if he would feel that it was important that we 'bond' by talking to each other. Dr. Ray and I talked and I knew fully well that the curtain was giving away all my secrets to the woman on the other side; she would know I had a mastectomy, my diagnosis, my plan for recovery. After Dr. Ray left, the voice on the other side of the curtain introduced herself to me and said, "I'm sure you think I'm some grumpy old 52 year old woman." Thinking it would be rude to agree, I said, "Well, we all have our moments. Just gotta get through it and get to a better place." We spoke briefly and she informed that she was having a Wipple on Wednesday. She asked what I had, and I informed that I had a mastectomy which meant my prospects as a Hooters Girl was over. She laughed and said I had a great attitude. I hoped some of that would rub off on her as I could tell she was not in a good place emotionally.

It was downhill from there. Multiple visitors walking past my bed and people bringing their children (kids who appeared to be aged 7-11) finally had me seeing red. I informed the tech who came to take my vitals I was close to calling the house officer. She got the message loud and clear and told her charge nurse who came in and listened to my complaint and then told me they had an open room and would move me. Ahhh....finally silence on Saturday evening and I was so relieved I went to sleep at 8:30pm and didn't wake until almost 6am.

I was discharged Sunday at 11am. My mom came to get me and we ended up driving through the cemetery to see the flags for Memorial Day, giving Walgreens a little more time to fill my prescriptions. Once we got home, my sister brought my three nephews over to see me and Tanner gave me a lovely card he made with foam stickers and said to me, "Can I give you a hug?" How could I say no!? I told him he could hug me on the right side and very gingerly he hugged me - he's such a lover. We'll have to watch him when he grows up! :)

Bryce and Skylar were happy to give me a right handed high five. Once they left, I was tired and ended up taking a nap. So begins the recovery at my parents......

My Saran Wrap boob

Applied the EMLA cream to my boob and have it wrapped in Saran Wrap. This will numb the area. Surgery at 10am, but I have imaging and injections at 7am.