I read these blogs by cancer survivors and other women just starting out on their own journey as I am and it seems like there is so much hope and inspiration I want to just soak it up like a sponge. There is plenty of sadness too and while I don’t turn away from that.. I just don’t claim it as mine. I am not particularly religious, though I do consider myself spiritual. I have a faith in God that never waivered even as I walked away from my childhood church and I know I am being prayed for by people with much greater faith than my own and I am grateful for that. Maybe this is my test? Maybe I am supposed to learn patience? I have no idea …but today I would have been happy to learn where the item I needed to ship out was after promising it would go today. I wish I hadn’t had a small melt down and decided to shut down my business if I was going to have to ask for help finding things (I didn’t, but the possibility remains) I would love to be this always calm and serene patient not causing any trouble to those around me, soft spoken and sweet and always thankful. But get real.. I had a lumpectomy, not a lobotomy.
So far so good as far as side effects. I took the anti-emetics religiously the day of chemo and all of day 2. This morning I woke up feeling pretty good and decided to only take as needed and so far one slight feeling of nausea was quelled with a hard peppermint candy. The steroid is making me a little hyper so I did a bit of housework. Enough to feel useful and to use later as a “poor me” if I need to pull one out.. win/win. I am so hungry on the steroid and trying not to give in to that. If I have to have cancer I should at least get the benefit of weight loss. Dammit. Tomorrow is my last day for the steroid until next round so I think I can maintain some control. We shall see. My biggest fret is my hair today. I feel it tingling and itching and I know it will be jumping ship soon. I have wigs and hats, scarves, turbans, so I’m ready. I’m debating helping it along to be done with it. Then I get thinking maybe it will just thin for a while and if I shave I will have horrible itchy stubble. My family is no help with this decision. I guess when the mister is busy snaking out the drain he may wish he had been willing to yield the razor!
Today was my first chemotherapy treatment and it went well. I arrived with my “chemo bag”.. a red canvas Trader Joe’s shopping bag with a notebook and pen, novel, Kindle Fire and a hand made breast cancer awareness blanket given to me by an aunt. I was ready for anything. It was not nearly the horrible experience I had built up in my mind over the past few days. One big concern to me was my port a cath. It was placed 30 days ago today. I had read that if unused it should be flushed every 2 weeks. I have had blood draws and a MUGA scan since it was placed and no one seemed eager to access it. I could have insisted I suppose but hey, if the chick with the fat needle is hesitant to stab a foreign body embedded in my chest, who am I to argue? I mentioned to the RN who was doing my blood draw today that it was virgin territory. She seemed surprised but didn’t say too much. After swabbing and anesthetizing it she told me to take a deep breath on 3 and plunged the needle right in. It was no more painful than any other needle stick and worked beautifully. She told me afterwards that she shared my concerns and it should have been flushed within 3 days of implant. Ooops.
Next I had a nursing assessment and then met with my Oncologist. They both went over everything again and answered all of my questions. I find it helps to keep a notebook. I also learned that the Tumor Board has recommended me for genetic counseling. I’m not sure when that will take place.
I was placed in a private room as all the bays were full. I was very comfortable, the nurse was attentive and again explained each step and took time to answer any question I had. I was given lunch and ate while the anti nausea drugs, steroid and saline were being introduced. Then 2 vials of Adriamycin over 5 minutes and finally Cytoxin for 30. I felt very little in the way of side effects. At the end of the last infusion my sinuses stung a little, like the sensation you get when chlorinated water goes up your nose while swimming. The sensation comes and goes, but is not very bothersome and I don’t expect it to last. There was also a slight metallic taste in my mouth that honestly I did not even notice until the nurse asked if I was experiencing it. I have a laundry list of anti-emetics at my disposal and am taking them on a schedule to hopefully avoid paying homage to the porcelain gods.
I have a list of possible side effects and was told to keep track of and report anything. Anything? hmmm … I planted myself in the recliner of dread when I came home and waited for the horrible terribleness. After 30 minutes I became bored and watched 2 episodes of Six Feet Under. After 2 and a half hours in a reclining position preceded by a 40 minute car ride preceded by an afternoon on a hospital bed I noticed my hips and legs were aching. I considered writing it down, but then decided I probably needed to just get up off my ass and move around.
I moved from the recliner to my computer desk where I have been enjoying a cup of wonton soup while writing down my experiences. Now it’s off to a hot bubblebath. All in all, not a bad day at all.
…. fifteen to go
When I first got my diagnosis I was about halfway through Season 1 of Breaking Bad, a story of a man diagnosed with inoperable lung cancer who starts manufacturing meth to make money to leave his family. I finished seasons 1-3 and next in line was the entire series of Six Feet Under and I’ve just finished Season 2 with 3 more to go. I had a glance at my queue this morning and after I finish this series, next in line is 50/50 and and waiting in the wings is Season 2 of the Big C and Season 4 of Breaking bad. Do you sense a trend? Interspersed among all the maudlin is a lot of comedy, admittedly mostly dark comedy, and some horror and adventure as well, but a whole lot of medical drama, cancer and death. I’ve decided to offset the morbid viewing with reading only uplifting and funny books and have just started Cool, Calm and Contentious by Merrill Markoe. Perhaps I’ll save Love Story for another time.
I’m taking today to feel sorry for myself. I have spent the last 2 months trying to make everyone else feel better, pretending all is normal, this is just a temporary blip ..but it is exhausting. I’m tired, sad and scared. This isn’t normal. This isn’t just an ordinary Christmas. In 4 days I start chemotherapy. The better part of the upcoming year will be spent fighting cancer and how many years afterwards will be spent worrying that it’s come back? Tomorrow I will put on a happy face and on the 27th I will begin my journey to survivorship, but today I am going to cry and be pissed and give myself a splitting headache. Later on after I’ve ruined a few batches of cookies I am going to have a big extra dry martini. Merry Christmas.
This was said to me by someone who loves me when I was describing my upcoming regimen. I didn’t react, but it struck me because at that time I was really struggling with my decision after reading up on and discussing all of the possible side effects of the drugs with Oncology. Had my cancer spread it would be a no brainer, but it hadn’t. Am I doing the right thing? Will I kill the cancer, but end up with life long health problems? Cardiac or nerve damage? This wasn’t a decision made lightly or without consideration of all the possible ramifications.
This is the thing though, the treatment I have chosen gives me a 10% chance of recurrence over the next 10 years. That’s a 90% chance of being completely cancer free 10 years from now. Let’s get crazy.
Words of support and encouragement from friends and family mean so much and I’ve been blessed with so much support from family and friends and even casual acquaintances. Emails, cards, phone calls, message board posts and Facebook messages that seem to come just when you need a lift.
But the words from your health care providers are the ones you hang onto and I have been as blessed with my medical team as I am with family and friends. Being referred to as healthy when you are being treated for cancer, being told you did nothing to cause this, reminded of your (relative) youth, not being talked down to, feeling like you are in control of your own healthcare all help you to feel like a person with cancer instead of a cancer patient. That might seem like a small distinction, but to me it’s huge. And it matters.