I am offering a Diary of my Cancer Journey to my family, friends, and readers. The reason I am opening my very private life up to you is because I found out that so many people have never known anyone who has had breast cancer and are very curious as to what it all means. Probably the hardest part of the journey is keeping everyone up-to-date so I decided to write it all down and direct everyone who is interested to read what my Journey is all about. I will try to update as best I can on days I feel up to it. Every day is a new day and a new experience.
This is not to scare anyone, nor get anyone worried it will happen to them. I am just telling you my experience, underscoring that everyone is different and reacts in very different ways.
If you have specific questions or words of encouragement, please email me at firstname.lastname@example.org. I will try my best to respond to your requests.
MY CANCER JOURNEY
July 13, 2012
Appointment with radiologist for routine mammogram. Into Salem for the yearly thing I have to do, but always think it so unnecessary. I am 67 years old, and if I haven’t had breast cancer by now, I never will. I need some things at Costco, so it won’t be a completely wasted trip.
July 16, 2012
Radiologist called and wants me to come in for an ultra sound of right breast. “Saw something on mammogram that they want to take a closer look at.” OK, no problem, been through this before. A shadow or something showing up and a call back needed.
July 18, 2012
Into Salem for an ultra sound. Technician took ultra sound probe and laid it directly upon the spot they were looking at. I was looking at a screen on the wall. There is was, as bright as day and about a foot in diameter at least on the monitor—a round mass. Technician moved around and took different pictures of the mass. It looked like a small petite pea, very round but edges were “puffy” looking like a bunch of little round balls all in a round mass. One angle actually looked almost like a perfect heart. What a dear message it was sending to me I thought. “Don’t worry, I am just a benign little thing growing in your breast. I Heart you.” Well, I thought, I don’t heart you—get out of me! Doctor looked at pictures and said, “Don’t worry, it’s probably nothing, but we want to take a biopsy just to make sure.” Well, that doesn’t sound good, but not to worry until there is actually something to worry about.
July 20, 2012
An ultra sound biopsy takes approximately 90 minutes. You are taken into a procedure room and laid upon a table. The ultra sound technician goes over everything that is going to happen during the procedure. Then you lay there until a doctor is freed up to come in to do the biopsy. I keep my eyes closed after meeting the doctor because I don’t want to know what is actually happening.
A lot of bustling around me and the ultra sound probe finds the mass for the doctor, he deadens the skin some, then he says you will feel a little prick as I make a slit in your skin. Didn’t really feel much, more like a needle prick. Then he inserts a small plastic tube to guide his instrument to the mass site. He slides the instrument into the tube as he looks at the monitor. He gets to the mass and takes two quick samples. The instrument sounds a lot like a stapler or the hole-punch when getting a pierced ear. So far no pain, just the sensation of touch and movement.
So two samples are not enough I guess and he proceeds to reinsert and take a total of 10-12 samples on different parts of the mass. Wow, I would count this doctor as thorough if nothing else. The doctor leaves and the technician finishes up with a bandage and I am done. It takes about three days for the lab to come back with a diagnosis. Ok, the first countdown begins.
July 24, 2012
On the way to town today to get maintenance work done on pickup and grocery shop. My cell phone rings and displays my family physician is calling. As I was holding my breath, he tells me they found malignant cancer cell in the mass. Wait a minute, I have not been worrying because it looked innocent. I guess this is the time I can start worrying. Do I have a surgeon that I am comfortable with and we can make an appointment? No, I don’t even know anyone who has or ever had breast cancer. No one in my family, none of my friends, this is all a shock and something that was never on my radar screen. I trust my family physician and told him to pick someone he knows and trusts.
July 25, 2012
On our way into Salem to see a breast cancer surgeon. So far I am not panicking much. Mainly, because I have no idea what to expect. I met with a wonderful doctor who explained all my options and between the three of us (husband, Jim, went with me to all appointments), and because the mass is very early on in diagnosis and no more than ¾ centimeter in mass, a lumpectomy, radiation, and hormone therapy would be the long term treatment. Again without really knowing anything about what was to come, I just started with surgery to get rid of the damn thing and would deal with other treatment as it came to me.
At this point, no one, not my family physician, me, nor even the surgeon could actually “feel” the mass. So, the lesson learned here is EARLY DETECTION and mammogram is the best way to get even earlier detection than self-exam.
Surgery was scheduled for August 3, 2012. Two days prior to surgery, an appointment was scheduled for a consultation visit with the oncology radiologist.
August 1, 2012
The consultation appointment made at the oncology radiologist was one and one half hours long. I met with support people from the Salem Cancer Institute, a litany of different people in the oncology radiology and, finally with the oncology radiologist himself. Wow, I have never seen so much support and piles of information on what to expect during my cancer journey. Everyone was so nice and helpful. I was overwhelmed.
I met more than a half dozen different people, then the oncology radiologist came in for a face-to-face on what to expect. At this point, my head is reeling, my eyes are glazed and I probably retained about 30% of what he was talking about. I now know why I was given a 3-ring binder of information—I could read it later on down the line when I had questions.
Radiology on the breast site would start about a month after surgery (first part of September) and require we go to the Salem Cancer Institute for this procedure Monday through Friday for Six Weeks!! Jim and I looked at each other. We had our annual month long reservations at Coyote-Rock RV & Marina for Chinook fishing on the Siletz. Well, that meant not only were we going to lose our vacation, we were losing our deposit (no refunds). Let’s add a little insult to injury. I was sick. It seemed like everything that was in our future was derailed. But, this is not an elective procedure. Do you want to survive? Or die?
August 3, 2012:
I was to report to the Salem Hospital for surgery this morning at 6:30 a.m. Wow, happy I was early surgery, but meant leaving our house at 5:30. Got to the hospital and was promptly taken to prep room. The nurses fluttered around and finished their checklist of prepping me. Then off I want to the ultra sound department for placement of a “wire” they would place from the outside of the skin down to the tumor site. The ultra sound guided the doctor and the wire was in place. So I was now sporting a wire sticking out of my chest. How cool. Oh, and the same doctor injected a needle full of radioactive material into my breast. This would flow through the lymph-nodes and underarm then disburse throughout my body. Well, that doesn’t sound good. But not to worry, the surgeon will have a little Geiger counter he will follow the radioactive material along the nodes to see if he needed to take any out. I am not sure how that works, but it didn’t sound especially exciting.
Then after all that I was wheeled into the mammogram room where the technician gave me a quick mammogram to see that the wire was in the right place. I was standing all alone in this unfamiliar room feeling very strange. The technician then walked over to a vase of pink carnations and plucked one out and gave to me. She then offered me a small handmade pillow made by the Hospital Ladies Auxiliary for breast cancer patients. I was extremely touched and near tears. How sweet.
Off to the surgery prep room again where Jim and I waited. Time’s up. Jim to the waiting room and I into surgery. Onto the table and the anesthetist put a gas mask on my face and told me to hold it. I did so. She said okay take five deep breaths. Well, I remember about 3 and out I was. Two hours later I woke in recovery. When I realized where I was, I was shocked the time had gone by so fast. For the first time EVER in my surgical life, I was not deathly sick when I woke up. I had talked to the anesthetist about getting very sick after surgery. She said she could mix me a cocktail that would help with nausea. Well, not only did it help, it cured any nausea or vomiting. Wow, love her.
The surgery nurse asked about pain levels and pumped me full of pain medications as I wished. I was feeling no pain and they wheeled my happy self to the second recovery room. I needed to do the following: pee, drink some juice, and eat a cracker. I had to pee something fierce so that was no problem and the moment I hit the easy chair in recovery I asked to use the facilities. I walked to the room came back and had apple juice and crackers. I was in this recovery less than an hour. They allow two hours. Get my husband in here. I’m going home.
When Jim came around the curtain and looked at me, his face dropped a mile and his eyes were startled. I thought what is the matter with that guy? He sat down and didn’t say anything until the drive home. Then I found out after the radioactive material goes throughout your body it turns your skin blue. Now I was thinking Smurfs, but it wasn’t that bad. But Jim, not knowing, came to me and I was a little blue. He thought at the time I was dying, I guess. But I was feeling fine. We had a good laugh over that.
I took the 45 minute drive home in stride without a bit of sickness. Wow.
August 6, 2012:
All weekend I was feeling fine. I was not sick a minute and I was dealing with some pain from surgery, but nothing a pain pill couldn’t fix. I also was in a breast binder, which is a tight elastic tube-top thingy they put you in after surgery. You don’t do any flopping around with that on.
We had promised Darcy, Jon, and Raegan we would take them out to eat at the Casino for Darcy’s birthday today. We met about 5 p.m. and we all tried a little of this and a little of that at the huge buffet. I was not terribly hungry and had a small amount of prime rib and some mashed potatoes with gravy. I had a couple of diet Pepsi’s and a little ice cream. I didn’t eat a great amount of food when I started feeling a little bloated. I quit eating and drank some soda. The longer I sat there the worse I got to feeling. I tried to be polite and not hurry anyone, but I was feeling pretty bad. When we left, I literally ran to the car with Jim behind me. I said I need to get home now. I feel ill.
And ill I was….I had to throw up badly. Before we got out of the parking lot I grabbed a paper grocery bag from the back and proceeded to eliminate half of what I had eaten. Jim grabbed the paper towels and I stuffed them in the bag. Three more times before I got home, I projectile vomited into that bag. There was nothing left a half hour after I left the buffet. It was all in the bag. I have never vomited that fierce nor that much in my entire life.
What happened? Not sure. Maybe I had just saved up not getting sick after surgery into one last big hurrah. But the good news was, after eating at the casino buffet, I lost two pounds. Whew.
August 13, 2012
Medical Life on hold until doctor appointment with oncology surgeon 10 days after surgery. On with life until today. Back to Salem Cancer Institute for post-surgical appointment. Very good news, Dr. Clarke said pathology tests show all surrounding tissue he took out with mass was clear of any cancer. The two lymph nodes he took out under my arm were also clear. He said as far as he was concerned I was good to go on to the next phase—medical oncology doctor. I now had my four doctor team for the remainder of the journey—adding Dr. Strother.
August 20, 2012
Back to Salem Cancer Institute oncology medicine—Dr. Strother. He explained to us all the pathology test results and what we could expect from now on. He said even though the tissue and nodes were clear, radiation was still on the schedule to “clean up” anything left behind in the breast tissue. But before radiation, we could need to address pathology test that indicated the tumor was “aggressive” which would indicate chemotherapy before radiation. We were shocked, we thought we were on the way to the end of treatment, not adding another layer. I sat there and tried to imagine what I feared most—chemotherapy treatment. There were four tests I had to pass that would allow me to bypass chemotherapy: 1) The mass was small; 2) The tissue and nodes were clear; 3) No cancer in family; and 4) Tumor was a low threat of returning elsewhere down the line by being very aggressive in its genetic makeup. I passed all but the pathologist’s report that he felt tissue was aggressive in nature.
The doctor said there is another test that we could do before agreeing to chemo. There is a company that will do a Oncotype DX Breast Test. Oncotype DX is a unique diagnostic breast cancer test that looks at the activity of 21 different genes in a woman’s breast tumor tissue. The test measures the chances of your specific breast cancer returning and the likelihood of you particularly benefiting from chemotherapy treatment. The test costs several thousand dollars, is covered by my insurance, and takes 10 days to get back report. Absolutely, go for it. We should have word by August 31 on the grade of the tumor between 0-100 recurrence score and we can get on with our life.
So again we go into wait mode. 10 horrible days, each day waiting for the next. After about 5 days of hand wringing, I finally reconciled in my mind that if after going through this test it is determined I need chemotherapy, I will do it. I didn’t want to get sick, lose my hair, and delay the inevitable radiation treatments, but more than that, I did not want to have the cancer return.
The end of August came and no word. Now I am worried. Why haven’t I heard anything? Days 12, 13, and 14 were Labor Day weekend—no word. These three days were the worst days of my Journey so far.
September 4, 2012
At 10:00 a.m., I could wait no longer for the phone call. I called the office, was told to leave a message which I did. A few minutes later, the assistant called back to apologize but the test we all thought was going to the Genomic Health on the 20th, didn’t get sent off. They realized this on August 31, the day I was supposed to get the results and it would be another 10 days before I would know anything. I held on to the phone and heard the words, but I couldn’t talk. But, but….and so forth. I finally thanked them for calling me back and hung up.
This was the first and only time I cried. I sat in my chair and bawled. I was so very disappointed. Was this nightmare ever going to end? So countdown to another 10 day wait.
September 13, 2012
I became pro-active to avoid another 10 days wait period and called the doctor’s office to see if they had any word on the test results. Cheerfully, she said they did have the results and as soon as the doctor had time to analyze the results, he would call me. I asked if that would be today. She said absolutely. She would make sure he called today.
And he did. The absolute best news possible was given to us. The tests graded the tumor at the low end of low risk. Very low, very low risk and no chemo needed in fact it would be harmful for me to do chemotherapy. Oh, and after radiation and 5 years of hormone therapy, he said the cure rate was 94%. Wow, you couldn’t get any better than that. We finally could get on with radiation treatment. Finally!!
September 18, 2012
Another appointment with oncology radiologist. They had a simulation set up for me. They use a CAT scanner to scan the area to get the density of breast tissue and the best angles for radiation machine to attack. There also was something I was laying on from shoulders up that the technician kept puffing up around my arms, neck and head. I didn’t know quite what that was, but was to find out in another 10 days!! And in this appointment, I received my tattoos. The technician put tattoo dots on my center chest, left chest, right chest, and under my right breast. Ouch. I had no idea tattoos hurt that much. I asked her if real tattoos hurt that much, she said these are real tattoos. That dashed my idea of making a tattoo after this is all over. Ouch!! How can you do that??
September 27, 2012
Finally, my first radiation therapy day!! I thought it would never come. I was escorted into the women’s gown waiting area. I got a locker, a key, and a beautiful hospital gown. Then you go sit in the waiting area and wait for technicians to come get you. Several other women were gathered in a group talking about all kinds of things. These were women in various states of therapy. Some were fresh out of chemotherapy and starting radiation and some had hair growing back from chemo and were in final stages of radiation. They obviously had become a little clique and were a nice support group for each other. I was an outsider and felt a little uncomfortable. But soon I was escorted into the “room.”
Before the room, I was taken to the control panel that reminded me of the Starship Enterprise control room. I was looking around for Captain Kirk, or Spock. I really didn’t have any idea what to expect of the room, the machine, or anything else. The techs were wonderful and tried to make me as comfortable as possible. I was first given the times of my appointments for the next 6 weeks. They bounced all over the morning for three weeks, then settled down weeks 4-6 to the same time every day. Each time I went into the room, I was to identify my picture, my birthdate, and my name. Two or three other techs repeated the information. They then took me past a door that was a foot thick with lead and down a short hallway. Into the room I went and there hanging from a rod across the room and also laying on the table where I was to lay for the treatment several green “forms” –the one that is formed to your body in the CT scan.
So I lay on my back on the table and put my head and shoulders in the form. I then was instructed to put my arms above my head and hang on to handles to get my upper arms to lay in the form. That way I was pretty locked into my position and wouldn’t move. A few tweaks of my hips, little green lights intersecting my tattoos and I was ready for my first treatment. I was being treated from a shot a little to the left and then all the way on the right and up from my back. The machine is awesome. All I can do is describe it as a scene from Tom Cruise’s War of the Worlds. There was a giant machine behind me and the only thing I could actually see was this round thing above my head several feet in diameter. As the techs cleared out of the room, they went back to the Starship control room and everything else was done by remote control.
So there I was with this round thing moving to my left, angled a little, then a whirling noise. About 10 seconds of actual radiation. Then it moved up over my head and went down so far on my right I could only see the tip-top of the round instrument. Another 10 seconds of treatment and the machine came back up over my head.
By the time the machine had found home, the techs were back in the room instructing me to lower my arms and put back on my gown. They helped me rise from the hard slab I was on and that was it. I walked out, got dressed, and went home to come back the next day.
So it took us 45 minutes to drive to the hospital, 5 minutes to wait, and 45 minutes to drive home. 30 seconds for actual treatment. Pretty awesome.
October 2, 2012
Day Four. I dressed in my gown and waited for my call back to treatment. I felt my first sensation of pain in my breast. I wasn’t sure if it was just residual surgery pain or caused by radiation, but it seemed a little early on for radiation pain. You are given a nice first aid cream to use on the entire area 2 times a day. I did that religiously. I had a little pink showing, but not bad. Everyone has warned me that as the weeks go by, there will be reddening and even peeling possible. Also, fatigue was a problem. The radiation is the same radiation you get from the sun and some may relate the fatigue with being out in the sun all day and how tired you feel after. That would be every day for me at some point. So far, nothing.
October 3, 2012
Day Five. When I arrived at the gown waiting area, there were several ladies waiting to go into the treatment rooms. One went in and came out a few minutes later. Her arm was straight out and she was in obvious pain. She couldn’t put her arm down because of the pain. She sat down before getting dressed to rest and in the process exposed a small part of her breast being treated. OMG. I got a shock of my future. Her skin was so raw and red it looked like she fell off a bike and skidded her skin on the concrete. She was in obvious pain. I felt light-headed. There you are, Dawn. That is coming up for you too. That scene bothered me for the entire day, that evening, and even as I went to bed that night. I was in shock and I couldn’t shake the horror I felt. It’s coming for you!!
October 5, 2012
Day Seven. A treatment and the weekly Friday appointment with the doctor. Everything looks good and off I went. Getting into a routine now. Just counting the days left.