Hair Today, Gone Tomorrow

Today, I had a blood test and then an appointment with my oncologist, Dr. Bob. The blood test was done in the chemo room and not downstairs in the lab as it was during my initial visit here. I was seated in a treatment room the same as when I was there for chemo. They used my port to take my blood and it was quick and relatively painless. I like that I do not have to worry about them hitting the vein properly. When I was leaving the treatment room, the teen who was one of my chemo roommates 2 weeks ago arrived. He was completely bald except for a few little tufts of hair. He looked a little more worn out as well. My heart went out to that kid. He should be out snowboarding and hanging with his friends.

After the blood test, Dave and I headed downstairs for my appointment. When Dr. Bob walked in and saw my hair, he smiled big and said “Wow!” and then asked if the hair was still mine. I told him yes, but it was starting to fall out. He said, “I don’t want to sound like a mean guy, but it is good your hair is falling out.” He told me that if it wasn’t, he would be worried that my body was metabolizing the medication too fast. He asked how things went and I told him I neglected to take the Kytril after the treatment. He gave me heck, “You have to take it. You want to keep your head out of the toilet.” Don’t worry, I learned my lesson. I won’t be forgetting  the Kytril next time.

Dr. Bob then asked to see how my lumpectomy was doing. I always find this part funny, me holding my shirt up while Dr. Bob checks out my breast and talks about how well it is healing. “And how about those Jets?” No, I am kidding about the Jets, but that is what it feels like to me; everyone is sitting around having a regular conversation and no one notices that some guy has his hand on my boob, not even me.  After the exam, Dr. Bob told me my blood count was still a little low, but it should be back up by Friday for the next round of chemo. He said they would check my blood again before treatment to make sure.  

I know the title of this blog, Hair Today, Gone Tomorrow seems kind of hokey, but it is fitting for what has been happening to me lately. Ever since I started chemo, just over two weeks ago, I have been testing to see if any hair would come out if I pulled on it. Last Thursday night, strands started coming out in my fingers. Tonight, I can pull out an entire piece.

I think tomorrow may be the day I shave it, before it really starts dropping off and my house looks like a Cookie Monster murder scene.  For as much as I have done to prepare myself for losing my hair, shaving my head is going to be tough. My hair is pretty short and I cut off a lot more than I am about to lose, but I can still look in the mirror and not be reminded that I am sick. Once my hair is gone, every time I look in the mirror, I will see that I am being treated for cancer. I often wonder if I am handling everything this well because I am in denial. It has been months since I received the diagnosis, but it still does not seem real. Even with a piece missing from my breast, a foreign object called a port residing under my skin, and my want to lie around all day, I still feel like everything is ok. Is that denial? Well, if it is, than I guess I will stay on the denial train, because it works. I am going to be bald soon and even though it really isn’t my choice, I have often wondered what it would be like. I think I am going to try and embrace my baldness. If being bald means I get to live, then who the hell needs hair, right?

I miss chatting with you, Sam. I hope you and the raccoons are sitting in the sunshine enjoying the view. Thanks for leaving us your music to remember you by. 

From Chemo to Costco

I went for my first chemotherapy treatment on Friday the Thirteenth. Dave dropped me at the doors since it was very close to my appointment time and he told me he would meet me upstairs. When I arrived, I was introduced to my nurse, Walt Whitman. Walt showed me around chemotherapy. First he had me put my purse and jacket on the chair I would be in for my treatment, then he showed me each treatment room, and where the kitchen and bathroom were. When we came back to my chair he showed me the IV pump I would be hooked up to and told me this was my new dance partner. He said I could unplug it and take it with me if I wanted to go to the kitchen or washroom. He left to get some information to give me, so I decided I should go to the washroom before I was hooked up to the IV.

When I was in the washroom, I heard a loud beeping noise start. I thought to myself “That sounds like a fire alarm.” When I came out, Dave was in the hall.  Just as he saw me, a nurse told him the fire alarm was going off and he would have to leave and told me I needed to go to my chair. I went and sat down and waited with my other roommates. There were two other women besides myself, one my age and one older. And I am sad to say that my 3^rd roommate was a teenage boy. Damn cancer! These treatment rooms should only have older people in them, not kids. It is things like this that keep me from feeling sorry for myself.

The nurses walked around and counted everyone to make sure we were all there. The older lady remarked that she has been coming here for 10 years and this is the first time the fire alarm has gone off. After several minutes, the alarm stopped and the people who came with us were allowed back in. Walt came over and said that the alarm going off must have been something for my first day. The teenager piped up, “and this is my first week!” I wondered what kind of treatment would bring him here more than once in the same week.

Walt explained each of the meds I would be given and how they would affect me. He told me in 8 to 15 days after treatment my white blood count would go down and that I was to avoid any infections. I should wash my hands a lot and avoid crowds and people who are sick. He told me that since my body will not be able to show me some signs of infection such as redness or pus, the only way I will know if I have an infection is if I have a fever.  I would need to take my temperature often and if it gets to 38 C then I am to go directly to emergency. Walt told me that my platelets would decrease and my blood’s ability to clot with be hampered. I am to avoid cuts, bruises, and burns and I must not blow my nose too hard, I need to use a very soft toothbrush, and I am to not take aspirin or ibuprofen. Walt also told me that I needed to drink lots and lots of water and urinate often in the next few days. He told me I needed to flush the drugs from my system as quickly as possible and that I should even get up a couple times in the night to do so.

Walt looked at my port incision and said it looked really good for being done 5 days earlier. The woman who was my age said that her port incision was still bleeding after 5 days and that she was badly scarred. She said my doctor had done a good job. Walt asked who did my port and I told him Dr. J. Walt said he has known him for years and said he was brilliant. I told him what had happened to my friend and how her lung was nicked. I told him how I had questioned Dr. J about it. Walt seemed amused that I had questioned the doctor and said things like that don’t happen often and he was very sorry it had happened to my friend. With that, Walt cleaned my port area. I asked if there would be a local freezing and he said no. He told me not to worry as he has done this many times. I braced myself… for nothing. Seriously, it was a slight pinch and that was it! At that moment I thought, this port is the cat’s ass! I am so glad I opted for it.

Walt first started me on saline and then put up a bag of Kytril, an anti-nausea. He told me that Kytril was the Big Kahuna of antiemetics and he was glad Dr. Bob had prescribed it to me.  Next were the chemo meds, two were pushed into my IV by Walt using big syringes and the 3^rd was hung up. Walt showed me each medication before it was given to me and I had to confirm that my name and birth date werecorrect on every single one.  Walt pointed to the giant syringes of red liquid and told me that Epirubicin is called the red devil by his patients. It is a red devil alright. It gave me a bit of a start when I went to the washroom. For a second, I thought I was peeing blood until I remembered what I was told by the very first nurse when I went for my consultation. She told me Epirubicin would colour my urine for a few days after it was given to me. I thought it would take some time to work its way through but it shows in your urine immediately.

After about 3 hours, I was all done for 3 weeks. I was feeling good, except for a head cold which seem to come on during treatment. I had been feeling a little stuffed up in the couple days prior and the chemo meds seemed to bring more symptoms forward. I told Dave I wanted to go to Costco to pick up my prescriptions and get some shopping done, in case I was too sick for the next while. I wandered around Costco for about 2 hours feeling light-headed, but nothing more. On the way home, I had a sudden bout of anxiety for about 5 minutes. It was odd, because I was feeling totally relaxed and there was nothing troubling me. When I got home I just felt like I had a bad cold.

The next day I felt fine and the cold seemed to be going away. In fact I felt so good that I forgot to take the 3 Kytril pills I was given. I was supposed to take them every 12 hours. I missed Friday evening so I took one at 6 am on Saturday. I felt good all day and again forgot about the pill in the evening. Sunday morning I felt even better and continued to forget. I had coffee, hung out for a bit, and then decided to take a shower.  I was feeling kind of hungry, but put off eating. That was a mistake. All of a sudden I had a bad headache, felt really hungry, but kind of nauseous at the same time. Dave called the oncologist on call and she said to take the Kytril now and take the next one in 12 hours. I took it, had something to eat, and then slept that afternoon and evening. I pretty much slept all day Monday and by Tuesday I was feeling much better, just a little tired.

I found that I couldn’t let myself get hungry or I get a headache and a hunger induced rage (Sorry Dave!) after a few days, the hunger rage started to go away and then  I got heartburn real bad. Pretty much anything would give me heartburn about 30 seconds after I started eating. I didn’t care, I ate anyway and then snacked on Gaviscon for dessert. I am glad to say that so far my sense of taste has stayed and food doesn’t taste like sawdust or musty as some people have told me has happened to them.  Last night I noticed the top of my scalp felt a little tender. After noticing that, the scalp at the back of my head felt a little tingly. Not sure if it is real or if my imagination getting the better of me.  We are about to embark on the family dinners and I am afraid to wash my hair in case I wash it right off of my head. I can’t have that crisis and go to a family dinner. Even though I have been mentally preparing myself for months for my hair falling out, I know it is not going to be a good day when it happens.  I sure hope that it’s not today.

Comes With an Owner's Manual

Last Monday I had my port was inserted for my upcoming chemo treatments. We arrived at admitting at 8 am and when my hospital bracelet was put on, I saw that my doctor was Dr. J (for no particular reason, I am naming him after Julius Irving, the basketball player). This is the very same surgeon who nicked my friend’s lung during her port insertion. My anxiety level jumped up about forty notches, but I managed to remain calm for some time. We had to make our way from admitting to the 3^rd floor and today there were no volunteers to guide us to where we had to go. Fortunately, my boyfriend Dave, having spent an entire day at HSC while I had my lumpectomy, knew how to get around the building. Once we were on the elevator up to the 3^rd floor, my calm exterior started to crack. Tears began to stream down my face, but I was in front, facing the door, so no one behind me could see me. When we got off the elevator Dave asked me what was wrong and I showed him my bracelet and told him. I took a minute to pull myself together, and then we headed for the right nursing station.

When we arrived at the desk, I gave them my file. While I was waiting, I noticed a large whiteboard with a whole bunch of writing on it. I homed in on the list of patients in for day surgery, who their doctor was, and what procedure they were having. There were 7 names, and 6 were having ports installed by Dr. J. This made me feel better. I reasoned that if he was doing this many today, he did this many each day he did ports, and that he likely does them at least once or twice a week, and he would have to have done many successfully in the 3 years (approx.) since my friend’s surgery. I calculated that the odds were in my favour. At this point, you may guess that I have been an accountant for many years (or a bookie).

Once I changed into the gowns I was given, I decided to take a picture out my window for this blog and for a facebook post. I find that having this blog in mind as I am embarking on these treatments helps keep my mind busy and I feel less anxiety about what is going to happen. 

A nurse came to put in my IV and I explained to her what happened with the vein in my hand at my MUGA scan appointment. I asked that she not put the IV in my hand. It took a bit to get the vein in my arm to pop up, but it did and I got the IV in my forearm. Let me tell you, it is a stingy place to get an IV, but I figured I could put up with it to save my hand. While she was taping everything in place I told her of my concerns with Dr. J and what had happened to my friend. We talked about it for quite a bit and she said that Dr. J was very experienced and what had happened to my friend only occurs in about 3 to 6 percent of port insertions. She also told me she worked directly with him for a few years and could say he was a good surgeon. She asked if my friend had been short of breath and I said, “No, she was in a great deal of pain, so she went to emergency where they tubed her chest.” The nurse’s eyes grew wide when I told her this. She asked when it happened and I said that I thought it may have been in late 2010, but I wasn’t positive. She told me that she may have been in that surgery with Dr. J at the time.

Sometime later, I was wheeled up to the pre-surgery area. The OR nurse introduced herself and explained the port insertion surgery to me. She showed me what a port and catheter look like. It was all shiny and purple and I hoped that I would get a port just like it. She then explained that they would make a small incision in my skin and fat, and make a little pocket for the port to sit in. They would not be cutting into any muscle, so I needn’t worry about that. I was kind of sad that the port was under my skin and no one would get to see how shiny and purple it was. She then demonstrated on herself how the port and catheter would sit. Just then, Dr. J walked in and introduced himself. He started explaining what he was going to do and when he got to the part about inserting the catheter, I said, “This is the dangerous part, right?” I am trying to remember exactly what was said and in what order, but I may not have it exact. I recall saying to him, “My friend had her lung nicked during this procedure and you were the surgeon.” He sat back and said something like, “You’re the one!” I am guessing that the IV nurse told him what I had told her. He did seem to know about what happened with my friend aside from what I told the nurse, because he told me that he had stopped putting the catheter down towards the heart and started putting it directly into the jugular. He said he went back to running them down towards the heart after patients complained about how irritated they were with the catheter in their neck. He also said the chance of a pneumothorax during the procedure is pretty low. The nurse asked how the patients were irritated and Dr. J said it bothered them that they could feel it when they turned their head. I told him it would be irritating because it is a reminder. He told me the choice was mine and I could have it put in my jugular if I wanted and I told him that my mom’s port was fine and so was another friend’s port, so I would go with what he normally does. He remarked I seemed to know a lot of people with ports and I said, “Yes, unfortunately.” I honestly don’t want to be reminded of the port and why I have it either.

In the operating room, before they put me into a conscious sedation, I heard a song playing. I asked Dr. J what it was. I think he told me, “Rolling In.” I asked who it was by and I could not make out the name as he had on a surgical mask. If anyone has any idea what the song is, please let me know. I fell asleep listening to the song and did not wake up until I was back in my room downstairs. Even though they told me I might be drifting in and out with conscious sedation, I knew I would be out, because I didn’t get much sleep the night before.

Once I awoke I was aware of a pain in my shoulder when I would move a certain way.  It was away from the port insertion and didn’t hurt all of the time, so it seemed not directly related to the surgery. A nurse took out my IV and explained how to care for my incision and gave me my owner’s manual for my new Xcela Power Injectable Port. Besides the owner’s manual, I received a purple bracelet and a purple card with the port’s serial number, my name, and Dr.J’s name on it. Oh yes, I also received a purple keychain tag identifying what type of port I have. After she explained everything, she took out my IV so I could start to get ready to go home.

 Once I started moving around the pain in my shoulder was excruciating at times and it seemed to be muscular as it hurt when I moved and really, really hurt when I tried to lie down.  It was so bad, I cried so they decided to send me for an x-ray. My original IV nurse came back in to give me morphine and saw that I didn’t have an IV any more. She got me a morphine pill instead and told me that when they do the surgery they place your arm over your head and I may be having pain from being in that position. I believe her, because my arm barely worked after I had to keep it in the same position for the biopsy. When the other nurse heard that IV nurse went to get me a pill, she realized she took the IV out too soon and was kicking herself. A little while later, I heard her being berated in the hall by another nurse who was taking over the next shift, “You never take out an IV until they are walking!” Right after the x-ray, I was waiting by the x-ray reception to be wheeled back to my room when I overheard a lady at the desk talking on the phone, “What is it? A PICC line? What are you people doing up there? This is the 5^th one today!” Apparently, everybody was catching heck today. The x-ray turned out to be fine so they let me go home.

It has been 3 days since my chemo port was put in and my shoulder is still quite sore and the area of the surgery is tender, but oddly itchy as heck. I know that I am allergic to the adhesive on some bandages, but besides being itchy there, the skin over the port is itchy as well. It seems weird, but my mom said it was the same for her and that it would go away.

On Wednesday I got the call I had been waiting for, I start my chemo treatments tomorrow morning. I only realized today that tomorrow is Friday the 13th. I am not superstitious, but I do find it kind of a coincidence.  Right after I got that call, I called Kendall and told her I need to get my hair coloured before Friday. Today, I got the most glorious colours put in my hair, a peacock green with royal blue bangs and highlights. I will be so styling at chemo tomorrow!

Any Port in a Storm?

Tomorrow I get my port inserted and I am definitely nervous. Not as nervous as I was before the lumpectomy, but nervous nonetheless.  A good friend of mine had her lung nicked during this very same day surgery and ended up in emergency later that night. She told me was scarred up pretty badly from the tube they put in at the ER. I am sure hoping my surgeon has a steady hand tomorrow.

Even though I know what happened to my friend, I still want a port over an IV for the delivery of chemo; My right hand is still sore from my vein collapsing over a week ago getting an injection for the MUGA scan. Earlier this week, I could barely use it and had to try and do things with my weaker left hand. I cannot even imagine getting 6 rounds of chemo in that hand. Tomorrow they are going to have to find somewhere else to put the IV for surgery.  I asked my mom about her port and she said she preferred it over having the IV in her hand as she did for her first cycle of chemo. She also had no issues with the insertion or with the port’s removal.

I still have not heard when chemo will begin, but I am sure I will hear this week. And once I hear I am sure I will be a nervous wreck about the first round. I am really hoping that the chemo does not kick my ass too badly and that I do not have too many side effects from all of the drugs I am about to take. My mother tolerated chemo really well, so I am hoping I do too.

On a brighter note, I have started looking at colours for my hair. When I was first diagnosed with breast cancer and knew that one of the side effects was the loss of my hair, it upset me. Well, it upset me after all of the other thoughts I had about death. I pictured handfuls of my long hair coming off my head. I thought, “Fuck you cancer! You are not taking my hair. I AM!” I decided to do 3 haircuts prior to beginning chemo. The first one would be a short hairstyle, the second even shorter, and the third I would colour my hair an unconventional colour and shorten it even further. I figured this may ease me into my hair loss.

I had originally thought I would dye my hair a bright pink, but have since been swayed after looking at photos of the different hair colours available. I am leaning towards a peacock green or turquoise, but we will see. My daughter-in-law, who is a stylist, told me that we will have to see how light my hair turns out after the bleaching before the colour.  I am excited!