My sister and Danny were with me the day I had my port removed. That surgery signified the end of cancer — the means by which all drugs entered my body was taken away. I worried I’d need one again at some point, and maybe I should just leave it there. But I have not required anything of the sort, and that boy in the photo is now 8 years old!
Lisa is the lucky winner in the “You Are the Best Medicine” book giveaway, and let me tell you — she is quite deserving! Here’s her “C” story:
I turned 41 and knew I needed to set up my mammogram — 40 went by so fast, and I had not done it yet. (I’d had a diagnostic mammogram when I was 35 due to a milk discharge, and everything was OK.) So, I went for my mammogram and got called back in for additional views. I was not scared at all, I knew a lot of times people need extra views. So, I went back in and had those views taken, then an ultrasound, and then a biopsy. The doctor said “usually masses that look like this are not benign.” That’s when I knew I was in trouble.
Five days later, I was told I had breast cancer. Invasive ductal carcinoma, two spots, maybe three. The next day, I went to a surgeon, he told me no chemo and a lumpectomy — that is if my MRI didn’t find something different. Well, the MRI showed a shotgun effect in my left breast. There was cancer “splattered” all around my left medial breast. This means a mastectomy. Fortunately, no lymph node involvement could be seen.
The doctors could never feel the masses in my breast — even when the surgeon held the tissue in his hands, he could not feel a mass.
I had my mastectomy on August 31, 2010, and being the master of this game, my cancer tricks us all again, and there is lymph node involvement, three out of 33 lymph nodes are positive. Great, I just got a free ticket for chemo! I had my bone and CAT scan, and thank goodness, those both are negative.
I get to go in Tuesday for my port surgery. I am so scared about chemo — not the sickness, not the fatigue, but the hair loss, and I feel stupid for admitting that, but it’s what keeps me covered. My hair keeps me warm, it keeps me hidden, and now I am going to be totally open. I am also concerned that my son will have trouble with that. He has never seen me without my hair flowing down my back. But I will make it. I have to. There is no other way, because I will do anything to be able to see him grow and have children. So, chemo will start in a two to four weeks, and I will put on those boxing gloves once again because I will not let “C” win.
And now, here’s where I weigh in with a few thoughts:
First, the hair. I know. I know. I know. It’s almost worse (OK, it is worse) than the disease. Please don’t feel stupid, Lisa, for fearing the bald. We all worry. It’s totally normal, and completely expected!
Second, thank you, Julie Clark, for writing this book, and for making it possible for Lisa to win a copy. I know it will warm her heart and help her son cope.
Third, best wishes to you, Lisa, as you begin this horrible and wonderful journey. You’ll find the wonderful along the way. It just takes time!
Every scar tells a story. Here’s Angi’s:
I got my first port in April 2005. I was told I should probably get a port prior to chemo (for breast cancer), so I found a general surgeon who could perform the surgery ASAP. I only had to do four rounds of chemo, but I didn’t want to take any chances with ruining my veins. As it is, I only have one arm which can be used since I had lymph nodes removed on the other side. After I completed my chemotherapy, I went ahead and set a date to have it removed, since it was pretty much useless as far as using it instead of an IV for surgery and such. My general surgeon didn’t find it necessary to take me back into the OR to remove my port. Instead she did it right in her office, claiming it wouldn’t hurt. At the time I had it removed, only three months had passed. So when she took a scalpel and sliced through the original incision, she was cutting through a healing wound — and it hurt. The site never healed correctly after that. Scar tissue formed on top of scar tissue. But still, it wasn’t all bad.
In 2008, when my cancer returned, it was thought that I would have to endure chemo again. So when the breast surgeon went in to remove bits of my chest wall, she placed a port so I wouldn’t need another surgical procedure. It wound up unnecessary, as I underwent radiation instead. The port sat unused until April of this year. I was undergoing breast reconstruction surgery, so my plastic surgeon removed it. Not long after, as it was healing, I noticed some areas that hurt when I touched it. Upon closer inspection, I found that I had very small bits of nylon surgical sutures poking out of the scar. I couldn’t pull them out or cut them any closer to the skin. These stitches sticking out, along with scar tissue on top of scar tissue, made for a pretty uncomfortable area. When I found out that I would be having revisions made to one of my breast implants, I asked my surgeon if he could make it a little less sightly. He agreed to revise the scar for me as part of my procedure on Monday. I’m looking forward to being able to wear my seat belt and bra straps comfortably again.
There’s a lot more to Angi’s cancer story than this. You can read all about it on Cancer is NOT a Death Sentence.
If you’ve got a story you’d like to share, please leave a comment, and I’ll be in touch.
Last night while John was reading the boys’ favorite Goosebumps book, 5-year-old Danny curled up in my lap (I love that), tugged at my shirt and asked, “Where’s that thing, where you had that bump?” I knew just what he meant. He wondered where to find the area where a port once poked up from underneath my skin. (My port lived near my collarbone for almost two years so that chemotherapy drugs had easy access to my veins.) I pointed to the area, now marked by a very faint scar about two inches long.
“Oh,” he said, and then returned his attention to the story about a boy who became a wax figure in a museum.
Danny doesn’t have much memory of breast cancer. A “thing” and a “bump” pretty much sum up his recollection of a disease that entered his life when he was just 18 months old. It seemed sad way back then to have a baby and cancer at the same time. Now, it seems a blessing. He doesn’t have a clue really. And that’s just how I think it should be.
Two years ago, I wanted another baby. Instead, I got breast cancer.
It was the day before Thanksgiving when the surgeon who performed my biopsy called me at home with the news. And for the entire Thanksgiving holiday — that seemed to last an eternity — I grappled with the fear and confusion and uncertainty that accompanies the discovery of a life-threatening illness.
It’s been a long road — complete with surgery, chemotherapy, hair loss, two hospitalizations, one blood transfusion, radiation, a year-long drug therapy, physical therapy, counseling, and more. But it also seems like a short trip. And today — two years after I learned the tiny, hard lump in my left breast was in fact cancer — it’s hard to believe so much time has passed. But it has. And the passing of time is marked by the scars under my armpits, a scar where my port once lived, hair that has grown so much it almost reaches my chin, and the growth of my two little boys who two years ago were 18 months and almost four years old. Now three and a half and almost six, it’s clear time has stormed right by.
Two boys are all I have. Cancer took the place of a third child. And while I still want another baby, I don’t know if I will have one. Because I am still grappling with the fear and confusion and uncertainty that accompanies life after cancer.
If I never have another child, I will be okay. Because I have my life. And I am thankful to simply be alive.
I went for my Herceptin infusion today thinking that after today’s dose, I had two more infusions ahead of me. But I don’t have two more remaining — I have one. So the end, which seemed so far away at the beginning, is upon me. The end of 52 whole weeks of Herceptin. The end of my visits on every third Wednesday. The end of the pink recliner and the community of cancer patients who surround me. The end of chemo nurses taking care of me. And maybe most important — the end of my own little getaway that was scheduled and required and never canceled. While John watched the boys, I spent several hours relaxing, thinking, breathing, reading, sleeping. Despite the reason for my mini-vacations over the past year — cancer — I have enjoyed the peace and the quiet and the time for reflection. Here are some of my reflections as my last visit to the infusion center approaches on June 28 and this one-year treatment comes to a close.
- There is light at the end of the tunnel. I have been tunneling through this cancer journey for almost 19 months and I can truly look back and wonder where the time has gone. Some days are long and some moments are bad, but time does heal wounds and pain and despair — and the light of the world does return.
- My children are more beautiful and glorious to me now than they ever have been.
- Some people do not get to live their lives over again — I do. And I want no regrets.
- I have many angels in my life — family and friends and people who have never met me. They are priceless.
- Hair does grow back. Mine was only just sprouting when I received my first Herceptin dose in July 2005 and now it’s long enough to pull into a clip.
- My port is a gift. Never have my veins been stuck or injured or damaged by needles or drugs. I watched a nurse today struggle to insert an IV into a man’s arm. One quick stick is all it takes to access my port and drugs flow in effortlessly and efficiently.
- Medicine is powerful. It saved my life.
- Attitude is powerful. It saved my life.
- Cancer survivors are powerful. They empower me and inspire me and make me want to fight.
- Everything happens for a reason. Whatever the reason, I am okay with having had cancer.
- I can find many silver linings in my cancer cloud — and one day, I’ll post them here.
For today, I will stop. My three boys are outside playing in the yard — two of them are wearing Superman pajamas and capes — and I don’t want to miss the moment.
In the hours that follow each Herceptin treatment, I have a routine of sorts. Not a purposeful routine. Things just seem to fall into place the same way each time, making every third Wednesday afternoon strikingly similar to all the other third Wednesday afternoons.
I leave the infusion center when my treatment is complete, feeling no ill effects, and I walk to my car. As I drive home, I call John and the boys to tell them I’m on the road and will soon be home. I return home, get a running hug from Danny and a passing glance from Joey, and ask John promptly about what I missed during my 3-4 hour absence from the most important guys in my world. John usually tells me that they wandered in the outdoors or visited Home Depot or just played at home. I always want more details than I get — I want the play-by-play rendition of what I see every day but miss so much when I am away. But I settle for the basics. Do I really need to know, after all, who ate what and who said what and who was happy and who was sad? And could I, myself, accurately recall all this detail if asked? Probably not. So I jump back into the swing of things — which includes dinner and bath and book, an easy bedtime for Danny, and a not-so-easy bedtime for Joey. And then I tend to myself.
I get undressed for a shower and look for the first time since my infusion at the small round bandaid that covers the port that is buried underneath the skin on the right side of my chest. I peel the bandaid off and see the tiny red dot where the IV needle poked me, sat in my skin for a few hours, and then was pulled out. It no longer bleeds but it looks sore and irritated. It is not painful really — but it gives me a queasy feeling to look at it and this is the first tangible reminder of my treatment earlier in the day.
There is something about tending to my own medical needs that makes me queasy — like pulling off the bandaid and really thinking about this foreign item under my skin. I have felt like this when removing bandages after surgeries, when applying ointment to my own wounds, when merely considering the thought of giving myself an injection. And I feel this when I first go the bathroom after my Herceptin treatment. Herceptin has a unique odor and I can smell the drug as it exits my body. It repulses me — and is my second reminder of what occurred hours before this moment.
And then, perhaps because of a physical reaction to Herceptin but mostly due to a mental habit, I take one Zofran pill — to combat the nausea I begin to feel or think I feel. It’s all I need. I never go on to feel any nausea during the three weeks that follow treatment. Life continues on normally. I have normal happy thoughts and normal sad thoughts and thoughts about whether this drug is making me feel bloated (Joey told me tonight, “When I see this loose skin on your tummy, I think there’s another baby in there.”) and thoughts about new diets and health regimens I’d like to follow once my treatment ends.
I conclude my routine by writing this entry.
And then my night resumes like any other night. I get ready for bed. I relax. I call my mom. I talk with John. I watch TV. I mentally prepare for another day with two busy boys who will keep me completely and fully occupied for each day that follows until my next infusion takes place. And I do it all over again.
My friend Nicole was with me when this picture was taken at the infusion center today. She said I look happy. Scary may be a better word, but it’s still an important photo for the story it tells.
I sit in a pink chair, usually with my feet propped up and a blanket on my lap, every three weeks on a Wednesday afternoon.
There are pink curtains between each pink chair in the infusion center but I’ve never seen these curtains closed. They remain open and allow for conversation, observation, for the building of community among patients.
I have a port on the right side of my chest, a port that I numb with a cream called Lidosense one hour before my infusion so I can’t feel the thick needle that pierces my skin.
The drug Herceptin drips into the clear tube, into my port, into my jugular vein, and into the rest of the bloodstream. After 90 minutes, saline drips into my body through this same method in order to clean the tube out of Herceptin and to push the remaining drops into my body. Then an injection of blood thinner follows to prevent clots at the site of my port.
The tube is taped to my shirt so I don’t get tangled up in it.
My red bracelet alerts nurses to my allergies to sulfa drugs, the antibiotic cefapime, tegaderm tape, and latex.
I wear shirts to chemo that zip or button so my port can be easily accessed.
My hair is dark and curly, only significant given the fact that it was once naturally blond and straight. My photo albums, yearbooks, framed pictures, driver’s license, credit card photo, campus IDs, and memories capture my previous look. This is new and different and still shocking to me.
My hair is growing. In the five months since my Herceptin therapy started, my hair has changed quite a bit. See photo in July 27 entry.
I clip my hair in the front to manage my new curls that have a mind of their own.
And Nicole is right. I look happy. I am happy. Despite the reason I sit in this pink chair every three weeks and despite the fact that I am fighting to live long enough to see my boys grow up, I am still happy.
It feels good to know that Herceptin is such a promising drug. Just today, after receiving my fifth dose of this treatment, I heard on ABC news that Herceptin is simply a wonder potion. In fact, the drug was taken out of clinical trials early so doctors could start putting it to use. The results were that good.
It also feels good to know that through other people’s eyes, my hair looks good. Today while at the Cancer Center, a physician assistant said it was “gorgeous.” Another woman admired my hair while we stood in the infusion center. A 36-year-old lymphoma patient whose hair was just beginning to grow back, she was speculating about how her hair would look once it was as long as mine. As long as mine. It does seem long compared to the days when all I saw was a shiny scalp. But when I consider that it’s been eight whole months since my hair started growing, my dark locks don’t seem that long at all. It doesn’t seem that gorgeous to me either. Some days I do like it. I like that it’s easy. I like that it looks stylish on a good day. I like the dark color sometimes too. But mostly, I am struggling to accept my new look. It’s strange to look in the mirror and recall the blond, straight hair I had for 34 years. I never would have cut my hair this short, or added so much dark curl, so to look at this extreme makeover is still startling. It’s minor really. I am alive and would give up all my hair forever if staying alive was guaranteed for a really long time. But in the here and now, it’s an adjustment. The compliments help, though. It’s flattering to know others like my hair. One day I may really like it too.
Despite the promise of Herceptin and my still overall feeling that I am going to survive my cancer battle, there are moments when I feel so unlike I once felt. Maybe it’s the hair that changes my whole appearance. Or the port that sticks out of my chest and today shows where a needle stuck me twice — once so painfully I wanted to scream. Maybe it’s the thought every time I wash myself in the shower that I might find another lump. Or that chemo is not preventing cancer cells from traveling through my body. Maybe it’s the mammogram I will receive in November — the first one since my breast cancer diagnosis. It could be anything — and it’s probably everything — that has changed my life, my perspective, my hopes and fears.
These chemo days bring everything to the forefront. They remind me of what I’m fighting for — my life. And that is daunting. But also a reality check. And now I can proceed with the next three weeks, thankful that I am right now a healthy and productive recipient of the life-saving Herceptin — with a head full of thick, dark, curly hair.
I am overcome with emotion and fatigue. Today I had five medical appointments. First, I had my port flushed. This has to be done once every four to six weeks when the port is not used regularly. My port gets accessed with a needle and saline and a blood thinner are flushed through the line to keep it clean and clear.
Second, I met with my oncologist who told me he thinks having my breasts and ovaries removed at this time is a radical approach. He thinks I should give myself some time to think things over and to live life a bit after treatment. Perhaps my worry will subside when life becomes normal again. He also recommended that I take an anti-depressant for a few months to ease my mind. I’m thinking about it. I really don’t like taking drugs. But my doctor says sometimes cancer patients need to clear their minds — and this helps. He says some describe the effect of the drug as bringing them out of a dark room and into the sunlight. I’ve filled the prescription and it sits on my kitchen counter. Another decision.
Third, I went for my 16th radiation treatment and learned that I will have 12 more of what I’ve been receiving and then will get 10 “boost” treatments. After radiation and fourth, I met with a radiation oncologist — this happens once per week to monitor my skin and any other side effects. So far, my skin is not affected. My side effect is fatigue — which today seems to have tripled with my busy schedule.
For a break, I met John, Joey, Danny, my mom, and Jordan for a quick and hectic lunch. Then I dropped off a prescription and went to get my arm fitted for a lymphedema sleeve (to help with swelling due to lymph node removal).
Fifth, I met with my OB/GYN to talk about ovaries. He did an ultrasound and pelvic exam and like popular opinion, told me screening for ovarian cancer is not very effective. But from what he could see, my ovaries look fine. He told me they are not fully functioning due to chemo-induced menopause but he saw signs that they may return to full function. If they do not, he says there is no need to keep them and I could have them removed. But until he knows of my true menopausal state — which could take up to one year — he does not recommend removing them. There is no evidence that I will get ovarian cancer at this time. I will still have the CA 125 test done to see if there is any elevation in levels that detect ovarian cancer — but this too can be deceiving.
For the near future, I will continue my treatment without making any big decisions. For today, I think I will put the topic of cancer to rest.
My “infusaport” is in. The procedure went well. I was a bit sedated but otherwise conscious and then spent two hours in the recovery room, wide awake and feeling fine. I ate crackers and drank water and then my sister brought me lunch. I got dressed and we walked to an appointment in another part of the hospital. There I met with my oncologist and nurse and learned about every possible chemo side effect, got a tour of the “infusion” room, received prescriptions for all kinds of drugs I may have to take, and gave my offiical consent for chemotherapy. I will soon be contacted about my first treatment which will take place one day next week. Each day after a chemo treatment, I will go back in for an injection of Neulasta, a drug to help keep my white blood cells up.
Now I think I’ll rest. The numbness in my chest is wearing off and my neck is a bit stiff and sore. I can feel the little metal port under my skin and that is a bit annoying . The port is completely sewn under my skin, with a tube running into my jugular vein and then into my heart. When I get each chemo treatment, the nurse will locate the port and inject a needle into my skin which goes into the middle of the port. Then the medication goes in. With the port, I’ll avoid repeated needle sticks in my hands and arms. Blood can also be drawn from this port since I will be getting lab tests often.
The worst part of this procedure is that I cannot pick up Danny for 3 days — due to the strain it might have on the surgery site. I hope I can comply with that.
As always, Joey reminds me that this stuff is no big deal. When I got home after being gone for many hours, he just walked past me and mumbled a “hey” and went on with his business. If that’s not a reminder that life goes on despite illness, I don’t know what is.