INTRO
February 25, 2009
Today, I found out that I will be needing chemotherapy treatments. My surgery to remove three malignant tumors from my breast was three weeks ago. I was diagnosed with cancer on December 30, 2008.
I decided, since there was much that I had to learn from my cancer experience, that I should blog about it to help others find their cancers.
I promise to keep it as short as possible. (I don’t have the patience for long narratives…)
Also, as I try not to be depressed over this, I’ll try not to be depressing!
If you can’t read the rest of my blog, take these few important things with you:
A woman should get in touch with her body as much as possible. Learn the contours, bumps, valleys, cysts, lumps, etc. of her breasts.
Complain to your doctor about anything that feels “different”. Insist on an ultrasound and/or MRI.
Be your own health advocate. You can save your own life!
http://www.mayoclinic.com/health/breast-self-exam/WO00026
http://www.feelyourboobies.com/
PART I: MY DENIAL
I admit it: I NEVER considered breast cancer. I have almost no risk factors. The only thing I can think of is my mother mentioning a cousin that died from breast cancer.
I am 50 years old. (Our chances increase with age.) I don’t feel old…..
I don’t think I have ever been exposed to radiation.
I’m thin.
I got my period when everyone else was getting theirs-about 12-years-old.
I was young when I had my kids and breast-fed both.
I was never a smoker.
My diet has always been pretty much low-fat. (I like fruits and salads.)
I stayed current on my mammograms and have had ultrasounds performed on my cysts.
Stay tuned for Part II: My Diagnosis
PART II: MY DIAGNOSIS
I remember the moment I found a lump. (I was not doing regular self-exams because I have cystic breasts and always wondered what I was supposed to be feeling for anyway.) That day, my right hand came up and my index finger touched the spot and there it was. It was very small and hard. I am beginning to believe that I have a Guardian Angel because there is no other explanation for me finding this.
I thought about it for a couple of days before deciding to call my doctor. Some instinct told me that something was wrong. My doctor thought it was nothing but sent me for a diagnostic mammogram and ultrasound. The mammogram was again clear but the ultrasound found that the thing looked like a tumor. (I watched the screen myself and they pointed out that my cysts were round and this thing had uneven edges.)
I went back for a needle biopsy. VERY unpleasant. (I won’t go into detail.)
A few days later, the doctor called to say that it tested positive for Intraductal Carcinoma. All one hears at this point is “CARCINOMA!!!” I was given the names of two surgeons and told to go with whichever could see me immediately. The first one was on vacation (this was 12/30) but the second one could see me the next day.
I called work to tell them that I was “calling in cancerous”, took the day off, had a 30-second cry to feel sorry for myself, then got on the phone and the Internet.
Christine went to LaGrange Hospital with me the next day. (Great way to spend New Year’s Eve, huh?!) Good thing she went with me because I was in a daze early in the morning and I have always said “two heads are better than one”.
I remember leaning over to Christine and saying that, “all of a sudden, that conversation we had about wrinkle creams doesn’t seem so important anymore!”
The doctor discussed options and felt that I needed more tests before final decisions could be made. I needed tests to see if the cancer had spread: chest x-ray, bone scan, EKG and blood test for liver (bet it looked pickled). I went from LaGrange Hospital right over to Hinsdale Hospital that very same day for the walk-in tests since I already had the day off. All came out fine.
I also needed an MRI—THAT was quite an experience. It’s so dang loud in there! The MRI found two more “areas of concern”.
Back to the hospital for more mammograms and needle biopsies.
Can I just take a moment here to make a sexist comment? If men had to put a very sensitive part of their body into a vice by some sadistic tech (who needlessly apologizes) and have said vice screwed down until you can’t take it anymore and then screwed down yet some more….well….I truly believe we would have found a better way by now. But…..I digress…
At this point, I had three stage I cancerous tumors. But, the good news was that they were all in the same area and could be removed by a lumpectomy. Keep in mind, mastectomy does NOT guarantee that the cancer will not come back. This helped me to not feel guilty for not chopping it all the way off.
PART III: MY SURGERY DAY (ICK factor: high)
During all this crap, I found out that my job was in jeopardy. They were laying off half the office in order to merge with Roadway and I was right in the middle of the seniority list. I can’t decide which I was more upset about; having breast cancer or being laid-off 18 months before my retirement. What does that say about me? I don’t know…
I do have to say that I have the BEST “Peeps” in my life! Everyone has been so nice to me. You all sent gifts, cards, supportive email, food, called Wayne, etc. I am so thankful for you all.
After all the tests came back, my lumpectomy was scheduled. I don’t mind surgeries because I always get a nice nap. But WAIT until you hear about the indignities to which I was subjected….
The night before, I was told to shower and then disinfect my whole body with a bunch of antiseptic wipes they gave me. HOWEVER, nowhere did it say not to shave! Ow, Ow, Ow! My legs felt like they were on fire. I took another shower, used moisturizer (which I wasn’t supposed to do) and ended up sleeping on the couch because I was twitching so much that I was keeping Wayne awake. I woke up ok.
Then, I had to spread a pain-killing cream on my breast to help with a particularly icky procedure. I covered that with plastic wrap. More on this later.
Wayne and I had to be at the hospital at 6 AM. Quite a feat for us night people. Then it was “hurry up and wait” for several hours.
I was hooked up to an IV, then they took me by wheelchair to the mammogram department. Wayne said he almost had to run to keep up with me—the guy wheeling me there must have been in a hurry.
This was a special mammogram machine designed for just one purpose: TORTURE! They shoved me and yanked me into the thing; then turned the screw on the vice but still couldn’t get all three tumors in the picture (one was very close to the chest wall). (Note: metal chips had been inserted into the tumors during the biopsies so they could see them.) They finally had to call in “Attila the Technician” to see if she could yank me hard enough. The techs in this department must be contortionist artists as well.
After an eternity, they got the picture but, oh no!, that wasn’t enough. This is when they jammed three needles with wires inside them through an opening in the mammogram machine into each tumor and then pulled out the needle. I had three wires sticking out about three inches. (This was what the surgeon needed to find the tumors during surgery.) They taped a Styrofoam cup over them and sent me on to my next adventure. They called it my “Madonna bra”.
Next, I had to have radioactive blue dye injected through my nipple four times. Did I say nipple? I sure did. Yuk! That was what the so-called pain-killing cream was allegedly for. It feels just like it sounds. Then they had to do a scan to see if I was radioactive enough.
Then the blessed oblivion of general anesthesia.
I awoke to learn that they removed the tumors and surrounding tissue. They also sliced out two lymph nodes (dyed blue and radioactive so they could find them using a Geiger counter). They tested negative for cancer so they stopped with two. That was darned good news!
I went home that day thinking that I would need just a few weeks of radiation and I was done. I was mistaken…
PART IV: VISIT WITH AN ONCOLOGIST
I took a week off from work and then went to see an Oncologist. That’s where she told me that I might need 12 weeks of chemotherapy, 6 weeks of radiation and five years of a once-a-week pill. Huh? Chemotherapy? That was a shock. She told me that there was a new test available to determine what kind of tumors I had and if they were the type likely to come back. That test came back borderline so we decided to get on with it.
I’m kind of glad, to tell you the truth. This way, I can assure myself that I did everything possible to keep this from coming back.
I asked my doctor if I would end up with any permanent damage to my body. I felt that the chemotherapy my mother had for leukemia turned her into an old lady. My doctor said that only rarely does a person end up with some permanent tingling in the hands and feet. I was glad to hear that. (Bonnie & I both will be flapping our arms at a snowmobile stop…)
I will lose all the hair on my body. This doesn’t bother me so much-I don’t know why. No more shaving? No more helmet-hair? (I’ll just take my helmet off and pop on the wig-voila!) No more blow-drying? No more plucking? I have two appointments for wig shops-insurance pays for part of it. The hair will grow back eventually.
That same day, I found out that I will be keeping my job. WHAT a roller-coaster ride!
PART V: CHEMOTHERAPY
I am hooked up to an IV getting my poison. (I always have to look away and concentrate on not fainting whenever I do this-one would think that I would be used to it by now.) I took some medication yesterday and this morning to help prevent nausea. They are giving me some anti-nausea stuff through my IV as well.
Wayne brought me and I told him he could leave. It’s Ash Wednesday so, of course, he’s traumatized by hunting down some sort of meatless meal.
Something just squirted from my IV in my hand onto my laptop screen. Is that bad? Ewwwwww. Seems to have stopped.
I checked in at 1 PM and will probably be here a couple of hours. I took the day off.
The chemotherapy room is an L-shaped room with big comfy lounge chairs. The nurses are right in front of us. They took my blood here last week so I was familiar with it. Something about this room makes me want to cry. I can’t figure out why. There are bright windows—the nurses are great. Most of them have ashes on their foreheads.
There are only two of us in here this time. An older woman and me. The medication going in doesn’t hurt.
They said I may start puking in a couple of days and be very tired over the weekend. This sucks because we have a big day planned on Saturday.
I have to come back here tomorrow for a shot. This will help my white blood cells recover. Then I wait three weeks and do it all over again.
The night of the treatment, I felt just fine. I went out for dinner at Jimmy Buffett’s restaurant with Wayner and Ken for shrimp (Ash Wednesday). The next day, I woke up achy. I went to LaGrange for the Neulasta shot then headed to a Naperville wig shop to try on wigs. I was getting progressively worse and the wig lady said it was from the shot. Then I drove to work. The next day, I was feeling flu-like symptoms and was wondering how bad this was going to get but, it started to taper off by late Friday night.
I had no nausea or vomiting. They gave me anti-nausea medication which I did not have to take. I took quite a lot of Ibuprophen, however for the achiness. Now, I just wish I would lose my appetite so I can avoid the trauma of getting weighed at the doctor’s office all the time!
PART VII: WIG ADVENTURES
Me before it started falling out
We picked out a wig from a wig shop in Willowbrook and took it home. I was starting to shed and, when the time came to chop off my hair, I wanted to be ready. My hair was really long because I didn’t bother to get a haircut for a long time because I was just going to lose it anyway.
It started to get really messy when we went up north with Hilary and Wayner. Wayne’s mom offered to chop it off for me so we went into the garage and buzzed it off. I wore my wig for the first time to the snowmobile club dinner that night. My cleaning lady, Georgette, introduced me to her Mother-in-law who just finished going through the exact same thing I am going through. There seems to be quite a few of us out there!
Wayne buzzed it a little shorter after we got home because my hair felt itchy under the wig. I ended up shaving my head to try to get rid of the itchiness. It helped a lot.
I have a wig fitting scheduled because it fits different without my hair.
I also got a free wig from the American Cancer Society. It's very short and a little too blond but should be good for summer.
PART VIII: MORE WIG ADVENTURES
Today is April 10, Good Friday. Yesterday, I had my third treatment and met with an Oncologist. I got some good news and some bad news. I'll talk about the good news at the end of this rant. I got my shot today and felt crappy but I took some Ibuprophen and am starting to feel a little better. I had to take two days off from work for this. Maybe tomorrow I can get something done around here.
The bad news is that my liver is "aggravated" - gee, what a surprise, considering my lifestyle. I just let the doctor believe that it was due to the chemotherapy and not my wild weekend before the blood test.
I'm still searching for the perfect wig. I've ordered and sent back about 10 wigs over the Internet from the American Cancer Society www.tlcdirect.org. They had great prices but none looked right on me.
I was having a hard time with itching because of folliculitis. This is a condition possibly caused by my shaving my head and the hair follicles got infected. I got a steroid cream from the doctor and it's much better.
I was told to put fabric softener on my wig to make it more comfortable and all it did was make it really greasy-looking. I wore it to work anyway but felt like staying home, I was so upset about it. I called the wig shop and she said I probably used too much fabric softener and to try baby powder. I've tried everything and it just doesn't look the same.
Meanwhile, I dragged Wayne to a couple of more wig shops and bought two short wigs. What I learned here is to shop around! I paid too much for my first wig but I didn't know any better. Also, my insurance company won't cover any of the cost of the wig. Maybe, if I get the energy, I will argue with them. These medical bills are getting bad.
The good news is that the chemotherapy is probably throwing me into menopause. That's really exciting news for me. Except for the night sweats and hot flashes, I'm glad about it.
My appointment for consultation with the radiation doctor is the middle of May. They do blood and a CT scan. Then five days a week for six weeks.
It's interesting learning about all this stuff. I feel like a third person looking in...
Have you ever been so tired that, when someone speaks to you, you see their lips moving and hear sound but can’t make any sense of what they are saying? That’s what happened to me when I went for a consultation with my Radiology Oncologist last week. I’m back to working nights so that I can get my radiation treatments done before work so 9:30 in the morning is very early for me. I forgot to tell them my Mother had leukemia and couldn’t remember whether my Grandfather had prostate or colon cancer. The funny part about it was that the nurse asking me these questions had a huge binder with all my records in it and, when I couldn’t remember something, she just looked it up.
The first thing the doctor said to me when he came in was: “They told you I was leaving, right?” No, no one told me he was leaving. So, my new doctor had just been fired. Isn’t that great?! He told me his contract wasn’t being renewed but that he wasn’t leaving until July so maybe we would be done by then.
The good news is that he recommended only 16 radiation treatments instead of the usual 32. This is on account of my small breast size. (And getting smaller if they keep cutting pieces out!) He said that Canada and the UK have had success with this for the last 10 years. He said that, because of the socialized medicine in these countries, there are extremely limited facilities that give radiation treatments so the shorter course of treatments was adopted as a necessity. Here, we have facilities every five miles or so. Toronto has two.
Since the treatments are five days a week, I will only have to go there for three weeks instead of six. I’m happy about that.
Today, I went to the hospital for a CT scan. The doctor needed to map out where they will shoot the radiation through my breast. They are very precise about it and shoot the radiation from the side. They don’t want to radiate anything they don’t have to, like my heart or lungs.
I was strapped to a torture-rack with my left arm raised above my head at an uncomfortable angle where it promptly fell asleep. The doctor marked some spots with a sharpie and then I was moved in and out of this circle thing a bunch of times. Again, I have to wonder how they handle people with claustrophobia. There wasn’t much room to spare.
After that was over, the tech covered the ink marks with tape that I have to try to keep on and tattooed on two more marks. That hurt! Since these two marks are permanent, I wish I could say they look like beauty marks but they just look like big old blackheads to me. Luckily, I don’t hang out at topless beaches so it’s no big deal.
I have to go for a “dry run” next week with the CT scanner and then they should start radiating me after that. Hope I can get a later appointment for the treatments so I can be more awake!
Part XI: Radiation begins - maybe...
Will this EVER end? Sometimes, I don’t think so. Today, I had my FOURTH preliminary visit before radiation starts. I apparently needed a “positioning” x-ray and two more lovely tattoos. They drew all over my chest with a marker, kept moving me this way and that and bent my left arm over my head where it fell asleep again. Then, they took x-rays with this huge piece of equipment that moved back and forth over my body. When it was done, it closed itself up. I kept thinking of those Transformer toys my son had when he was little.
Radiation starts tomorrow. LaGrange Oncology will be my life for the next three weeks. Good thing we live near the hospital. What do people do in rural areas?
Part XI: Radiation begins - finally!
Pretty much the same as yesterday. Takes five minutes. This is going to be a breeze! I can finally see some light at the end of this long, long, tunnel.
Part XII: Almost over...
Today is June 17th and my birthday. I said a little prayer of thanks to God for my 51 years. To celebrate, I thought I would save myself a thousand words:
It has been one year since my cancer diagnosis. I just read the words above and decided that I had quite a year! However, it went by so fast-the blink of an eye. I also describe it as “no big deal” at the same time.
I sort of emotionally shut down since my last entry. I “took the summer off” from cancer. I was supposed to get a blood test in August but put it off until October. Then, I had to face reality again and get another mammogram, MRI, blood test, CT scan, colonoscopy, doctors’ visits, etc.
As of this writing, I am healthy and cancer-free. I have some lingering issues with anemia, gastritis, and diverticulosis (which I had before this) but my oncologist thinks that my body is still recovering from treatments. I still feel a little tired and quite achy but all that could be the result of working nights, little exercise and my age. I will need to visit my surgeon, oncologist and GP every couple of months or so and get a regular blood test.
My hair came back curly and I dyed it. It’s just a thick as before but the curly part is weird for me as my hair has always been straight. Should be interesting as it grows out. I am glad not to have to wear the wigs anymore! After twice turning down my claim for wig (cranial prosthesis) reimbursement, I was surprised when my insurance company sent me a check.
I see an older woman in the mirror these days but that could be the dark circles caused by the anemia or just the fact that I AM an older woman! Hopefully, I’ll keep getting older.
I will end my blog with this last entry. I would like to put this adventure behind me as much as possible. Of course, I will be reminded every time I see my scar and funny hair but that’s not such a bad thing. I need to be reminded to do breast self-exams and take care of my health. I hope that, after reading this, you will too.
Happy New Year and God bless us all!
