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.
I am 49 years old, married with 3 grown children, 2 semi-psychotic dogs and 2 lazy orange cats. On 10/30/11 I discovered a lump in my right breast and was diagnosed with Stage 2 invasive ductal carcinoma. Breast Cancer. I have had surgery and am about to begin chemotherapy, followed by radiation and estrogen suppression. I try to find humor in most situations and there have been some cringe worthy and down right funny moments over the past 2 months. I want to share my journey to being a cancer survivor.
I am going to catch up to today, 12/20/11 … one week from my first chemo treatment.
On Sunday evening, 10/30/11 I discovered a lump in my right breast while showering. I didn’t mention it to my husband, but posted on a message board that I frequent that I was “freaking out” a little. My friends all assured me it was probably nothing, maybe even a “fatty” tumor but encouraged me to see my doctor first thing Monday morning. Over coffee I casually mentioned that I was going to see my general practitioner because I had found a lump. I was sure it was just a cyst at this point. It literally appeared over night. I was seen that afternoon and she agreed with my assessment. It looked, felt and acted like a cyst. Just to be sure I was scheduled for an ultrasound and mammogram (my last one was 12/09 and I had been told every 2 years was sufficient). The techs asked why I was here and I said to verify I had a cyst. They said nothing to dissuade me from that. The radiologist read the ultrasound after I was told to dress and sent the tech in for more views, this time of the axillary area. She asked again when my last mammogram was and chided me for waiting. I went home and waited. That afternoon my doctor called me and said it was not a cyst after all, but a firm mass and I was scheduled to see a surgeon the next morning.
My husband and I met with the surgeon and after an examination he biopsied the lump. He casually mentioned if he didn’t get enough of a sample, the next step would be an excisional biopsy in the OR. Fine by me. I wanted it out. He said I would have results the next afternoon and finally did call late in the day to let me know there were no results, but if I did need an additional biopsy then it would be done with ultrasound guidance. Monday I got the call that another biopsy was needed. The sample was “suspicious” but insufficient. I knew then that it was cancer, but had to wait for the official word. The secretary called with an appointment for that Thursday. I nearly begged to be seen sooner, even if that meant the OR. She talked to the doctor and called back to say no, he would not take me to the OR without this biopsy in case it was “something” and they needed to do more. The words “something” and “anything” were used a lot. I wanted to point out that I was well aware what we were looking for and it was okay to use the word cancer. I resisted the urge. Knowing how anxious I was the secretary offered to see if she could get me in sooner at another facility. I got a call that afternoon from the cancer center and was scheduled the next day. The breast care coordinator met me at the hospital and held my hand through the very painful biopsy. We both pretended we didn’t know it was cancer. This was Tuesday. Thursday afternoon I got the call. I was relieved to hear the words and anxious to move forward with treatment.
I met with my surgeon, husband and mother at the cancer center the next morning along with another breast care coordinator and was given a lot of information to digest. Too much really. My mother and husband were supposed to be my extra ears, but I think I actually heard and grasped more than they did. I had already come to terms with having cancer. Or so I thought. As it turns out this is a work in progress.
Throughout this process I had told my husband, parents and sister, but not our children and I struggled over that. Our son is living in another state and traveling for work. Our daughters are in Grad School and College. I didn’t want them to have to deal with this until we knew exactly what we were dealing with. Calling them was very hard and I broke down for the first time. Our son wanted to come home and started looking for flights. Our oldest daughter headed home from Boston that night. The youngest came the next day. Having them home was a nice distraction and while we did talk about the cancer, we didn’t dwell on it. We went to dinner and a movie, laughed, and just hung out. At one point they said I was so upset when I called them “we thought one of the dogs had died”. So glad it was nothing that terrible.
Since my diagnosis I have met with Medical and Radiation Oncology to discuss options, have had an MRI that showed only the lump we were already aware of, have had surgery, oncology teaching, and something called a MUGA scan to see if my heart is healthy before beginning treatments. The MRI results meant I could have a lumpectomy (or breast conservation surgery or partial mastectomy.. take your pick). I had decided if mastectomy was needed I wanted both breasts taken, so this was good news and I was ready for some. I could have opted for radiation only after the surgery, but because the cancer is hormone receptive and because micro metastasis was found in the sentinel lymph node, I am going for broke. I will have chemo for 6+ months, followed by radiation and then Tamoxifen for 5 years.
I don’t know how I will feel with the chemo, I do know I will lose my hair and will likely be tired. Beyond that I am going to take each day as it comes. I’m as prepared mentally and physically as I can be. I can cry over losing my hair or be grateful I got to keep my breasts. I choose gratitude. I’ve bought wigs, hats and scarves and my on line friends sent me a box with hats and scarves from all over the country. It came on a day when I really needed a smile. I will refer to them as Daisies when I mention them in this blog. They are the best group of friends I’ve never met, giving so much love and support it humbles me. I get emotional at strange times.. like while talking with a cousin at Walmart about the holidays (but to be honest Walmart always makes me want to cry). When meeting with the doctors I feel very focused and confident that I am getting the best advice and medical care I can. I sometimes wonder if they think I am in denial because I don’t get emotional during those meetings. It’s not something I can turn on and off.. I feel what I’m feeling and move on. You would think this would be a tough time of year, but the holidays are busy and I have no time to dwell. I’ve had one “bad” day when I had to meet with my surgeon, get my hair cut and see the dentist with plenty of time in between appointments but not enough to do anything productive. It was a long day. Getting my hair cut bothered me far more than I expected. Discussing breast cancer with my dentist was just surreal, but dental care has to be attended to before starting chemo. When I finally got home I had a headache, a super short haircut and wanted to have a good cry. I told my daughter and husband if one more person I barely know looks at me with tears in their eyes and hugs me I am having thorns surgically implanted. I think I could probably do that when I have my port a cath removed. We’ll have to see if it’s covered by Blue Cross.
My family and friends have been supportive and have (mostly unintentionally) provided me with a lot of laughs. I talk freely about my diagnosis and treatment because I don’t want my kids to be afraid of cancer. There is a family history on both sides and they need to see it is not a death sentence and when life hands you lemons you make lemonade. Well that’s what I want them to do. I’m buying some vodka and drinking until the lemons are gone.
In October 2012, I will turn 50 and plan to be cancer free. I am getting a tattoo to celebrate.