Diagnosis: Breast Cancer - Part 1
Journal of a Woman Recently Diagnosed with Breast Cancer
(Written Oct 8, 2009 for Associated Content / Yahoo! Voices / Yahoo! Contributor Network)
What you are about to read is my personal diary about my breast cancer journey. It is very long and covers every aspect of my journey from the initial diagnoses through radiation and chemotherapy. You may not want to read the whole thing – or you may want to return to it at a later date. But if you know somebody who has recently been diagnosed with breast cancer, you might understand what it’s like for your loved one to hear the words I heard that Monday five years ago:
Day 1 September 21, 2009 - Monday
"I have some news and it's not good."
For some reason, the way my oncologist said it - not good - was less shattering than hearing the words, "bad news." After nurses removed several tissue samples during the biopsy, I was glad for the positive way she delivered what was to follow.
"The pathology report shows that you have breast cancer."
My mind flitted around my head in a tornado of thoughts that would not stop long enough for me to ask any questions. Whether it was the flurry of activity in my brain or the shock my body underwent after hearing the word cancer, I could think of nothing to say, so I said nothing.
"Are you OK?" she asked after what must have seemed an uncomfortably long time.
I was fine. I was grateful actually. I thought back to the moment I found the lump. I wouldn't have found it so early if it hadn't been for my grandson, Travis, texting me at 2 o'clock in the morning. It's one of those special things he and I share, texting in the middle of the night. He's nearly 17 years old and he doesn't care who knows that he loves his grandma.
I am usually sound asleep when he texts, and while I love getting his texts, texting is not one of my talents. I fumble with the wrong keys and I'm forever erasing what I just typed. I'm even worse at trying to text while lying down, so I sit up to text him back.
On this particular day, I fall back onto my pillow and fold my arms across my chest smiling about his silly texts that say such things as, "Hey, what up, G?" or "Happy 2:34 (the time it is when he texts)."
When I folded my arms across my chest in that early morning hour, I felt a lump the size of a grape. That was in September, only months after my May digital mammogram showed clear results. I had to ignore the lump for a couple of weeks, though, because I had scheduled a two week visit with my son and his family. My Marine son was stationed in
Iraq four times, in Japan for a year, in Thailand for several months, and in Kuwait for several months. No way was I going to pass up a chance to visit with him and his family - and my granddaughter (whose husband is also a Marine) and her family - for something so small.
By the time I returned two weeks later, the lump had grown to more than an inch. And now the doctor was telling me it was breast cancer.
Family and close friends rallied in support, but everybody wondered why I was so upbeat about the whole thing. I couldn't help it. It wasn't pancreatic cancer, I told them. It was breast cancer, easily remedied.
As a teenager and young adult I used to laugh when I was nervous. I resort to humor even now when I'm uncomfortable. One of my dearest friends told me that if I was going to have cancer, breast cancer was the best type to have. We both laughed when I said, "Yay, yippee, I have BREAST cancer!" And we talked about how I could now use breast cancer to excuse myself from having to do anything I didn't want to do:
Sorry, can't mop up that mess. I have breast cancer. Sorry, didn't hear you - my breast cancer is acting up. Sorry, officer, I was in a rush to beat my breast cancer. And on and on.
From that point we went off on a tangent to discuss how my grandchildren could use the breast cancer excuse too. Sorry, couldn't make it to class today - my grandma has breast cancer.
Am I delirious? Possibly. Maybe I'm in that "ignorance is bliss" stage. I don't really understand yet what is going to happen to me. I am relying completely upon the hospital staff who has been holding my hand every step of the way. After the initial diagnosis, staff members made appointments for me. They scheduled four back-to-back meetings this Thursday with a nurse navigator, a medical doctor, a surgeon, and a social worker.
I don't have to think about what's coming. I just have to follow the wisdom of everybody who is helping me. My biggest concern has always been my lack of money, and even now, my thoughts are not focused on breast cancer; they're focused on my finances. I don't know how I might have responded to the news if I hadn't participated in the IBCC program.
While Illinois has possibly the worst reputation for governors of any state in the United States, if not for Rod Blagojevich, former governor of Illinois who encouraged women of low income to participate in the Illinois Breast and Cervical Cancer Program by sending postcards to Illinois residents, I would never have been able to afford the medical treatment I have gotten and will be getting. Despite Blagojevich's problems, I for one, am grateful for his attention to this matter.
Day 4 September 24, 2009 - Thursday
I have to admit: today was the first day I felt a little apprehensive about my breast cancer diagnosis despite the fact that my mom and one of my sisters would be accompanying me to the meetings scheduled today at the Mills Breast Cancer Institute.
I had four appointments - one with a "nurse navigator" who walked me through the process of what I would be doing for the duration of the interviews. Next in line was the surgeon who told me he had never seen breast cancer in the area of the breast where mine was located. He wanted me to know that the operation would be a real challenge and that if I chose a lumpectomy, he would perform the operation, but that a mastectomy might result anyway.
In a lumpectomy, the surgeon looks for "good margins" and removes not only the tumor but also the surrounding tissue. Because of where mine is located, conditions are not conducive to good results - my surgeon doesn't think I have enough tissue around the tumor to remove it without guaranteeing complete removal of the cancer.
The tumor is located close to my chest wall at the base of my breast. Also, with a lumpectomy I would have to get radiation and, because of the location of the tumor, the radiation would affect my lungs. With a history of asthma, even though only the tiniest portion of my lung would be affected, he wanted me to know that it was up to me if I wanted to risk injuring my lungs.
Another risky option was choosing chemotherapy to shrink the tumor before any surgery took place. Tumors don't always shrink after chemotherapy treatments though, and the three to six months it would take for the chemo to possibly be effective might result in an enlarged tumor anyway.
A mastectomy, on the other hand, would mean removal of the whole breast followed by chemotherapy to kill any other cancer cells that may be lingering in my body. With a mastectomy, I had the option of leaving enough skin for reconstruction or removing the skin and leaving nothing. The sight of having no breast would be traumatic enough, I decided. Having loose skin hanging where my breast used to be would further traumatize me.
Because of the risk of the cancer metastasizing (spreading), the surgeon would also remove lymph nodes during the mastectomy to make sure the cancer had not spread.
After my visit with the surgeon, I went to the lab to get my blood drawn. When the nurse held my arm to take my blood, she looked at me compassionately and said, "We're one in eight." She had had breast cancer too. I thought of the people around me, the people I love dearly. They number more than eight. I wasn't thinking, "Why me?" I was thinking, "Why not me?" I'd rather it be me than anyone I love.
So I'm choosing a mastectomy. The blood work that was drawn yesterday will determine when I have the surgery. Like the lymph node removal, the blood work will show whether or not the cancer has spread. Right now, because of the size of the tumor my cancer is in stage 2 (out of these stages: 0, 1, 2, 3, 4). The actual stage will be determined when the surgeon removes the tumor.
The x-ray I had will show the current size of the tumor. The surgeon told me that while it appeared the tumor had grown, the tissue around it was being affected by the cancer, and there was no way of knowing if what I was feeling was the tumor or the tissue around the tumor. So I await the results.
Day 7 - September 27 - Sunday
Today is a day of reflection. I find myself wondering about how I might FEEL after the mastectomy. Will I ever be able to look at myself in the mirror again? Will any man fall in love with a woman who is missing a breast? People already in relationships have to deal with mastectomies together. Somebody who is not even in my life yet may not be able to handle it (no pun intended).
Other issues surface. I toss and turn all night thinking about them. Will every turn result in pain? Even simple movements might cause pain. Pouring water into the coffee maker will be an issue - the water receptacle is located on the right side of the coffee maker. Reaching high for a cup or a glass, grabbing plates, or pulling out pots and pans - all of them might cause pain.
What about showering and washing my hair? Will I lose my hair? Would it matter if I did? I had long thick nearly-black hair growing up. Today it's still long and thick, but my hair color is about 95% silvery white. Hair grows but would I lose my eyebrows and eyelashes too?
The pain would limit me for a long time. I know myself. I have a very low threshold for pain. I could have the same operation as the next person and while she might feel a little discomfort, I will be in excruciating pain. I've heard women brag about how they felt a little tightness and seconds later delivered a baby. I could have slammed my belly with an axe and not felt any worse pain than when I gave birth.
Like many women who grew up during the "flower children" era, I wanted to deliver my children naturally. Pain connected with "natural" births resulted in babies. Mastectomy pain, however, would result only in loss. I'm definitely taking pain medication for the mastectomy.
I don't mind being that one in eight who has breast cancer. I don't even really mind that I have to lose a breast or that I might lose my hair. What has happened as a result of getting breast cancer is that I have noticed what a phenomenal group of family and friends I have, all of whom are like soldiers battling this disease with me. If ever I felt like crying, I would find so many shoulders willing to accept me. It humbles me. I truly do have an amazing troop of supporters.
I know that my optimism is tempered with age. My breasts fulfilled their duties. They nursed four healthy babies many years ago. If I were a young woman facing a mastectomy, I'm sure the loss of my breast would be more important and I might feel sorrow for its loss. I might still feel sorrow for its loss. I don't know. This breast did, after all, feed all of my babies. But getting rid of the unwelcome invader in me is of utmost importance, and my focus is on defeating this enemy.
Day 8 - September 28 - Monday
Blood work and x-ray results came in today. So far, it appears that while the tumor itself has grown, the cancer has not spread to other organs. What this means is that during surgery, they may have to remove only a couple of lymph nodes. I am becoming more and more uncomfortable with the idea of getting a mastectomy.
I decided to look online for actual photos of what the aftermath of a mastectomy looks like. I don't know if I can handle looking at myself in the mirror. I wonder if that's how people who've lost limbs feel. Though I never thought before that I could benefit from talking to somebody who had had one before me, I am looking forward to talking to one now.
Interestingly, through my affiliations on Facebook, a former high school classmate informed me that her twin, also a friend of mine in high school, had been through breast cancer once and was possibly going through it again. When she asked me if I wanted her phone number, I willingly accepted it and spoke to Caryn for quite a while.
Caryn battled breast cancer seven years ago. She might have it again. Her results come in this week around the same time I will be scheduled for surgery.
I have to talk to my pulmonary specialist before I decide if I want my surgeon to perform a lumpectomy. If he feels that even the slightest damage will hurt my lungs, I will have to proceed with a mastectomy. I am aware that I may end up with a mastectomy anyway, but now, after viewing the photos of actual mastectomy patients, I am considering reconstruction. Or maybe a lumpectomy after all.
Day 9 - September 29 - Tuesday
I'm having second, third, and fourth thoughts about everything. When my pulmonary specialist told me I would be fine even if the radiologist removed a third of my right lung, I decided to go ahead and schedule the lumpectomy. But when I called the surgeon's office back, I was told I would need to talk again with the oncologist, because preparation for a lumpectomy might require me to get further testing. Even the thought of going for further testing is wearing me down. Thursday I meet with my oncologist.
Day 10 - September 30 - Wednesday
I received an email from Caryn's sister, Cathy. She definitely has breast cancer again.
Day 11 - October 1 - Thursday
According to my oncologist, my chances of recovering from breast cancer are the same whether I get a lumpectomy or a mastectomy, so I will start with a lumpectomy. Since my last visit, more of the pathology report surfaced. Because the pathology report showed that I have an aggressive form of cancer, my oncologist has decided to treat the cancer aggressively using three different forms of chemo drugs: Carboplatin, Taxotere, and Herceptin. I have what is called the Her-2/neu gene for her-2/neu positive disease. Herceptin would be the best chemo drug for my form of breast cancer, but it wreaks havoc on the heart valves. She scheduled a MUGA (multigated acquisition) scan for Friday. The MUGA scan will tell her if my heart is pumping blood properly. If my heart valves are functioning properly, my body will be able to accept Herceptin.
The cancer is aggressive. The treatment will be aggressive - six rounds of chemo, once every three weeks. Then surgery. Then more chemo and, after the lumpectomy, radiation. If they discover after the second treatment, that the tumor has not shrunk, I will get a mastectomy after all. And two treatments is all it will take to change my looks.
"You will go bald," the oncologist told me and added, "Sorry. I'm a straight shooter."
Day 12 - October 2 - Friday
The MUGA scan was not at all what I expected it to be. I thought I would walk into an x-ray room, stand in front of a machine, the technician would shoot a picture, and I would be finished.
The reality was that a phlebotomist had to draw my blood, blend it with a radioactive dye, and re-inject it in me. Then I had to lie on a table while a large flat scanner above me scanned my heart valves. Every scan took approximately 7 minutes. The technician took several scans because she couldn't find a good angle. For some reason, my heart - that used to be centered just below the middle of my left breast - is now so near my left side, I can feel it beating into the bed when I recline on my left side. The technician assured me that not all hearts are located in the same place.
Day 15 - October 5 - Monday
The MUGA scan report indicates that one valve is functioning at 60%, another at 68%, so the Herceptin will work well with me. Chemotherapy starts this Thursday.
Part II will discuss my feelings about chemotherapy, how it affects my health, and how I feel about losing my hair.
Diagnosis: Breast Cancer - Part II
Journal of a Woman Recently Diagnosed with Breast Cancer
Nov 23, 2009
Day 18 - October 8, 2009 - Thursday
Today I received my first chemotherapy treatment. Knowing I would be there for several hours, I brought along my laptop and a couple of magazines to fill my time. Next time I'll remember to bring food.
All I wanted was a salad, but when I discovered that anything I purchased would cost $6.00 a plate, I made sure to fill that plate with fish, vegetables, a desert, and oh, yes, a side salad.
Before I went for treatment, I met with Dr. Johnson, my oncologist, who measured the tumor to be 4 cm. From that office, I went to a large room filled with various people receiving their own cocktail of chemo medications. Every cancer is different. Everybody's personal health history is different. Even people with breast cancer have different forms of breast cancer. The regimen is uniquely designed for each person.
My first nurse, Sherry, explained that I would be receiving 10 minutes of anti-nausea medication, followed by one round each of one-hour chemotherapy medications: Taxotere and Carboplatin. At the end of those two hour and ten minutes, I would be given the final drug, Herceptin, that would attack my Her2/new receptors. That infusion would take an hour and a half the first time I received it, one hour the next time I'm given it. I explain the drugs in more detail in Part I.
Complications of those drugs are numerous. I know what to expect, but am I really prepared for what I will experience?
When I walked into the room where I would be administered the chemo, I was first surprised by the number of people hooked up to IV's. Because this was my first time, I was taken to a secluded room where the nurse explained each step as I was experiencing it. As the day progressed, I felt increasingly tired.
By the time I got home, I was exhausted. Fatigue is one symptom of the drugs I am taking that now include Dexamethason and Compazine for nausea.
In order to take accurate notes of my visits, I asked Sandy, the woman who handled my initial registration and who may possibly be a manager, to give me copies of my records. She has been very helpful.
Day 19 - October 9, 2009 - Friday
My body feels as if it has been pumped with three hundred pounds of drugs and I am dragging them around with me - uphill through quicksand. Fatigue is one of the side effects of the drugs, but I feel completely drained. And I can't sleep. Another side effect of the drugs I am taking is insomnia.
Day 20 - October 10, 2009 - Saturday
I think about my hair falling out - not about how it will affect me, but about how other people will react to seeing me. I think also about how I will smell, because many years ago, a little boy I used to watch developed ALL (Acute Lymphocytic Leukemia) and had to receive chemotherapy treatments. His mother called me over to their home one afternoon.
She opened the door to his room where he was still sleeping and asked, "What do you smell?" She already knew. She was looking for confirmation. I couldn't lie, but I told her there had to be a reasonable explanation for why he smelled like death.
We had no access to computers back then, so I called a local hospital to inquire about the smell. As chemotherapy kills cells, cells die. We were smelling cellular death. Fortunately Bradley went into remission. It truly was only his cells that were dying.
But I think about that smell that assaulted me decades ago. I worked at Billings Hospital in Chicago for many years. From our office we had to pass the morgue on our way to the cafeteria. I remember that smell.
Day 22 - October 12, 2009 - Monday
I try to remember to flush the toilet twice each time I use it. After all, what is now being emitted from my body is considered hazardous waste material. I think the reason I got no sleep last Thursday night was because I was so focused on not spontaneously emitting any dangerous chemicals, either through vomiting or defecating, because the nurse's admonitions played heavily in my brain - wear gloves if you soil your bed linens - wash them separately - don't let anybody touch them - consider them toxic waste.
I was terrified of spreading something so hazardous to my grandchildren who were sleeping with me while their parents were on vacation. My oldest daughter, Keeley, had come for the week to help out, but Audrey (who will be 5 at the end of this month) and Nolan (2) were feeling the temporary loss of their parents and relied on me for comfort. I had no energy for anything other than rest on Friday.
By Saturday I thought I was one of the lucky ones - one of the ones who handled chemo so well, I could go about my business as usual a mere two days after my first chemotherapy treatment.
I was wrong. Sunday came on so sluggishly, I dragged myself around feeling the weight of my exhaustion with every step I took.
Today is a better day. I feel some energy, though not much. I still have my hair. My grandchildren and the little boy I watch are wearing me out today though. Where I used to have so much energy, I now feel myself falling into exhaustion. It's nearly "quiet time" now. Maybe I'll get through the day.
Day 25 - October 15, 2009 - Thursday
My throat has been sore for three days. My tongue feels as if I have sores covering the surface. I've been exhausted. I try to maintain my childcare, but I'm finding it impossible. Everything I do takes so much effort. Even sitting at my computer for any stretch of time causes such extreme fatigue I have to lie down.
I still have my hair, though I dreamed last night that I lost a tuft of it just off the crown. Premonition? I don't know. I'm afraid to even brush my hair for fear of seeing it disappear into my brush. I'm thinking of cutting it short tomorrow.
Day 31 - October 21, 2009 - Wednesday
The weight of my body seems finally to have lifted. I was feeling well for the first time on Sunday and felt ready to meet a friend for lunch. Scott and I, when we meet, because we see each other so seldom, spend as much as four or five hours catching each other up on our lives. And we spend most of that time laughing and reminiscing about our individual lives and our time spent working together as graphic designers.
Two hours into the lunch, I felt the heaviness return, but I stretched it to three at which time I had to go home and lie down. Monday was a sluggish day as well. Monday was the one and a half week point after my last chemo treatment. Yesterday I felt almost back to normal and today, as I sit at my computer, I feel almost normal. My hair hasn't fallen out and I wonder - since my hair is so thick, what if I were to lose only half my hair? I would still have enough to make a full head of hair.
It probably doesn't fall out that way though. It probably falls out in clumps. I don't really want to know, but the oncologist says I will find out.
Day 36 - October 26, 2009 - Monday
The hair loss had been minimal - until today. While lately I had been losing more hair than I normally would on an average day, today everything changed. As always I brushed my hair before I took a shower to make sure I removed all the loose hair. I wasn't too surprised to see the brush filled with so much hair I couldn't see the bristles.
But while I was washing my hair in the shower, I felt my hair fall like wet chinchillas cascading down my back and sliding down my legs. The balls of hair racing toward the drain frightened me at first until I realized they were clumps of hair. The hair loss was so extreme, it filled up a grocery bag by the time I was done collecting it. I have lots of thick hair, so losing as much as I did was probably equivalent to losing somebody else's entire head of hair. I could be completely bald as early as tomorrow, which is my next scheduled chemo date.
I've been sick with a really bad cold, so I've been taking echinacea, drinking lots of juices, water, and tea, and swallowing Mucinex caplets, because colds for me, especially in October with its high mold count, often turns into respiratory infections.
Day 37 - October 27, 2009 - Tuesday
Today is my second chemo treatment. I am sitting in the chemo room as I write this. Earlier today I met with Dr. Johnson who was amazed at how much the tumor had shrunk. She could no longer feel it, telling me I had won the prize for the day! My tumor shrunk more than anybody else's!
While my appointment was at 10:30 and it is now 12:45, we are still awaiting the results of the blood work that will determine if my body is well enough to accept an infusion today. With four an a half more hours of drug injections, today has already been long.
I discussed my hair loss with Sherry, the same woman who was my nurse on my last visit. She told me that she had discussed with another nurse the last time I was here that she wouldn't mind going gray if her hair looked as good as mine did. Weird how many compliments I'm getting on my hair now.
Day 38 - October 28, 2009 - Wednesday
I can't stand that feeling of hair running down my back. My youngest daughter, Brittney, helped me cut and shave what was left of my hair. It's amazing to me that I now feel chill on my head. I'm afraid I'll scare my grandchildren when they see their grandma bald.
Audrey and Nolan looked at me with shock. They know I'm sick. We warned them about the hair loss, but I don't think they ever imagined - I couldn't imagine - how I would look completely bald.
Day 40 - October 30, 2009 - Friday
My cold is now a full-blown infection. October has always been my worst asthma month. I have to be vigilant that colds don't turn into asthma attacks, but with my resistance so low due to the Chemo treatments, I had been fighting a losing battle. Today I will have to get the necessary medicines to prevent this infection from landing me in the hospital.
My son, Greg, arrives today with his three children. Three more grandchildren will get the shocks of their lives.
Day 41 - October 31, 2009 - Saturday
I received an amazing package in the mail today, a box filled with scarves, hats, and slippers. My friend Denise, in trying to help me feel comfortable through the discomfort of chemo treatments, added to her former gift (a luxurious bath robe designed to provide warmth and security) by providing me with even more comfort and support. I truly have amazing friends and family.
Day 42 - November 1, 2009 - Sunday
The infection has taken control of my body. Though I fight it, I find my resistance lowered. I'm hoping for some relief so I can start breathing normally.
Day 44 - November 3, 2009 - Tuesday
Today my son leaves for Virginia again. Before he got here, I went to the doctor's office to discuss my chemo reactions. My mouth is in such severe pain, eating hurts. Evi, the nurse, told me that chemo lowers my resistance and my white blood count, the necessary component for fighting infections. The raging infection combined with the chemo are wreaking havoc on my body. I try to rest, and for the first time in decades I'm actually able to nap, but this infection and the chemo are completely draining me.
Day 45 - November 4, 2009 - Wednesday
I took the last of the Z-pak yesterday, medicine designed to fight respiratory infections. The infection seems to be subsiding for the first time. Today, because the chemo causes sores in the mouth, was the first day I could open my mouth wide enough to accept a spoon. It seems that around the fourth day after chemo, my lips feel as if they are on fire. My tongue feels as if it has been severed with a carpenter's knife, and the back of my tongue feels as if a thousand needles jut out from it so that every swallow slices the back of my throat. Today I can swallow without much pain and today my tongue is healing.
Something unusual happened this chemo treatment. I ended up with blisters on my chest. I wonder if the chemo is boiling me from the inside out. A couple more days rest should help me get through to the next round of chemo. I couldn't get in to see my pulmonary doctor until next Tuesday.
Day 51 - November 10, 2009 - Tuesday
My pulmonary specialist filled my prescriptions for Advair, Singulair, and ProAir (albuterol). The total cost for the prescriptions would have been $515 if medicaid hadn't picked up the tab. My copay was $9. What happens to people who have cancer and asthma and whose incomes aren't as pathetic as mine, who make barely above minimum wage but who don't qualify for medicaid? Sad to say, but with the economy as bad as it is, I'm glad I'm so poor I can get medical care for free.
Day 55 - November 14, 2009 - Saturday
My lungs still don't feel right, but my bronchitis cough is not as bad anymore. I find myself dreading my next chemo treatment. I'm feeling fairly well today, only a little tired, but I've come to accept fatigue as part of the program.
Today I will drive 50 miles north to celebrate my great grandson's first birthday and go shopping to purchase my youngest (2 years old) grandson's birthday present. Both birthdays were this week. I will also buy drinkable food I can easily swallow, food that will get me through the next two weeks after my chemo treatment this coming Tuesday, foods like Instant Breakfast, and cans of liquid dietary supplements.
Every time somebody invites me somewhere I have to make sure the function falls in that one weekend before my chemo when I know I'll be able to handle it. I have one good week a month where I'm tired but capable of doing more than staying in bed. This is my final weekend before round 3.
Day 58 - November 17, 2009 - Tuesday
I sit in the lobby of the Mills Breast Cancer Institute after having seen my oncologist, Dr. Johnson. The tumor has shrunk so much she wants to initiate plans for surgery. Dr. Berlin, my surgeon, is performing a procedure as I write this and I'm waiting to see him so that I can schedule the surgery.
The only problem I encountered today was that my potassium was too low. Low potassium has been a problem for me since my 20s. I generally take potassium supplements, but stopped taking a lot of my medications - prescriptions and over the counter - when I discovered I had breast cancer.
Because of recurrent problems with my asthma, I started taking my asthma meds again, but from what I read on http://www.emedicinehealth.com/low_potassium/page2_em.htm asthma medications can sometimes cause low potassium. My oncologist told me to start taking the potassium again, because the surgeon would not be able to perform the surgery with my count so low.
Day 61 - November 20, 2009 - Friday
I had an MRI yesterday. After talking to my oncologist on Tuesday, I discovered it was time to prepare for surgery. The MRI will tell Dr. Berlin, my surgeon, where to cut. Now that the tumor has shrunk so much, we need the MRI to point Dr. Berlin in the right direction.
Prior to the MRI, I had to have a needle placed in my vein. My veins are not cooperating. Last chemo treatment, when the nurse placed a needle in my vein, it collapsed. Yesterday, three different nurses attempted to place needles in my veins. The first two "blew" my veins and today I have bruises on the tops of both of my hands to show where their attempts failed.
The MRI was uncomfortable. Face down so that my breasts could fall into the openings where the scans would show Dr. Berlin where to cut, my neck, after the first half hour, was in so much pain, I felt a migraine come on. If the MRI worked, I will be getting surgery on Tuesday.
The MRI was followed by a physical and an EKG.
Dr. Berlin's nurse, Linda, told me what to expect on Tuesday - needles in my breast prior to the operation. She called in a prescription for me so that I could place cream just outside my nipples to an inch around my nipples to cover the area where the needles will be placed. The cream, which was to be applied an hour before surgery, was supposed to numb my breasts so that I wouldn't feel the needles or the wiring that will be placed inside my breast. Sadly, my medical card does not cover the cost of the $53 medicine and I have no money to pay for it.
I feel as if I'm about to be tortured and I wonder if other medications might work, because I don't want to feel the needles and wiring going into my breast. I'm wishing they would just knock me out for the entire surgical procedure and I'm wondering why they can't.
Day 64 - November 23, 2009 - Monday
Today is the last day before surgery. Tomorrow I will get a sonogram, a lumpectomy, and a sentinel node biopsy. The sentinel node biopsy will tell them if the cancer has metastasized (spread). Several nodes will also be taken from under my arm as well.
Linda, Dr. Berlin's nurse, is trying to get Medicaid to pay for the cream. The cream has no substitute. If they don't agree to cover it, I'll beg them to anesthetize me for the entire procedure.
The journey continues. Part III will cover everything from my surgery on, including radiation and more chemotherapy.
Diagnosis: Breast Cancer - Part III
Journal of a Woman Recently Diagnosed with Breast Cancer
Jan 2, 2010
Day 66 - November 25, 2009 - Wednesday
Yesterday was the date of my lumpectomy and my sentinel node biopsy procedure. I'll write more about it later when I feel better.
Day 71 - November 30, 2009 - Monday
The surgery itself was painless. I was knocked out. What happened prior to surgery, though, was excruciating.
Because the MRI showed nothing, Dr. Berlin, my surgeon, wanted me to have a sonogram prior to surgery so that he could get an idea of where the lump was located. The sonogram showed a small lump and nurses inserted a wire into my breast to mark its location. They also punctured four areas around my nipple to insert dye that would locate the lymph nodes. I was not anesthetized for the procedure and the cream that was supposed to reduce the pain didn't help at all. The needles that went into the area around my nipple caused so much pain, I wanted to cry.
Once that part of the pre-surgery was over, I could relax.
Today I am healing. My breast is only slightly deformed, but it looks as if it is underwired with stitches. The area under my arm is also stitched. I have no feeling on the skin in my upper arm from about two inches above the elbow all the way up to my arm pit and around to the area next to my breast. That numbness is probably helping though, because the area where the lymph nodes were removed is very sensitive.
I spent Thanksgiving and the following Friday in bed, trying to deal with the pain. Today, even though the pain is nowhere near as bad as it was last week, I find that each step I take causes some stress on my breast as I walk and it has altered the way I move.
Thursday I will meet with my surgeon again at which time I hope to get the pathology report from the lymph node removal. He will probably remove the stitches at that time as well.
Friday I will meet with my oncologist to map out a plan for resuming the chemotherapy. Chemo, whether she decides on two or four more rounds, will be followed by radiation.
Day 74 - December 3, 2009 - Thursday
I am surprised by how much pain I'm still in. As the sensitivity returns to the skin on my arm and underarm area, the pain increases. I try to move my arm so that it doesn't get stuck in one position, but the pain prevents me from moving it too far. Today I will meet with my surgeon. Hopefully he will be able to give me some measure of the time involved so that I can look forward to complete healing.
Day 78 - December 7, 2009 - Monday
The impact of having breast cancer has finally hit me. It took 78 days, but here it is. Last Thursday I met with Dr. Berlin, my surgeon, who thought I was healing well. But he told me that some people feel the pain for weeks. Today I am still in a lot of pain and can't help but wonder when I will feel better.
He removed the stitches and told me he was surprised by how well I could move my arm. Most people, he said, couldn't move it that well even after several weeks. I had been stretching, I told him, hoping it would help lessen the pain. It hasn't helped with the pain, but it has helped with my mobility.
The pathology report showed that the cancer had fortunately not metastasized. For that I am grateful.
Friday I met with Dr. Johnson, my oncologist, who set a schedule for the rest of my treatment. She was very happy with how well the cancer responded to the treatment so far, but I now have four more chemo treatments to look forward to, after which I will receive 30 days of radiation.
What I didn't know was that I would continue to receive chemotherapy after radiation up until and through next October.
I really thought I had only three more months to deal with this cancer. And now I see it will take up nearly a year of my life. Why it waited until today to hit me, I don't know. Well, maybe I do know.
Tomorrow I resume chemotherapy treatment. The needle, the pain, the exhaustion - two weeks ahead of me when I will feel completely incapacitated, almost as if I'm in a coma. I'll hear people talking around me, but even opening my mouth to speak will be laborious.
I have become terrified of needles. So often lately my veins collapse or blow and I'm feeling stress at the thought of going for so many more chemo treatments. One of the nurses who saw me prior to surgery suggested using a blood pressure cuff instead of a tourniquet. She pumped it to 100 and told me she had more success with veins not collapsing or blowing by using the cuff. I'll remember to tell all future nurses about this method.
And then there's the problem with my mouth. Layers of my tongue will split open and sharp protrusions will scrape the back of my throat. Four more times. Four more times. I just keep saying that after tomorrow it will be only three more times. Dr. Johnson assures me that after the radiation, the chemo treatment will be different. My hair will grow back. I'll be on only Herceptin then and I won't feel nauseous. I might not even feel exhausted all the time either.
Three more times - after tomorrow.
Day 89 - December 18, 2009 - Friday
The chemo treatment last time caused only minor mouth pain. The exhaustion didn't seem to be as heavy either. While I wouldn't say I feel anywhere close to my normal energy level, I didn't feel as deeply affected by the chemo this last time.
Maybe, because the chemo came post-surgery, the dosage isn't as high. I'll have to remember to ask the nurse the next time I go for chemo, New Year’s Eve.
The pain from the lymph node removal still affects my movement. I try to exercise my arm so I can get full mobility, but I feel as if part of the inside of my arm has been removed and I can extend it only so far. I can't use my right arm to get plates out of the cabinet because I can't stretch my arm that far. And I can't lie on my right side.
I'm still chronically tired. Seems I can't make it through the day without having to lie down for most of it. I don't know how some people work through this. I wonder if my age is contributing to the overall fatigue. But I'm grateful that I'm more energetic this week than last. My family will celebrate Christmas this weekend and I'd like to be able to participate.
Day 92 - December 21, 2009 - Friday
Our Christmas celebration was yesterday. It exhausted me. Of course, the fatigue could have more to do with the cold I caught over the weekend than with the effects of the chemo. The struggle now will be keeping the cold from becoming an asthma attack. Chemo lowers resistance, so I have to be ultra careful. Fortunately, I'm not working so I can rest often.
I'm still working on stretching my arm, but I still can't extend my arm its full length yet. The skin around my armpit is still numb, but underneath the skin, I still feel pain. Ten more days until my next treatment.
Day 102 - December 31, 2009 - Thursday
Today is my fourth chemo treatment. Dr. Johnson told me the dosage hadn't changed. Maybe I'm just handling it better and building up a tolerance. I hope so.
This journey is taking much longer than I initially anticipated it would take. I still experience pain when I stretch my arm. Pulling a sweater or sweatshirt over my head is painful. Putting deodorant on is so painful, that I barely touch my skin and I shriek with pain. I continue to stretch though, so eventually I will be able to move my arm completely, hopefully. At least now I can lie on my right side without the pinching sensation in my back. The numbness, however, remains.
Two more chemo treatments to go before I go for six weeks of radiation, five days a week, followed by more chemo treatments. I will continue to fight this fight and I will win!
Part IV will cover my experience with radiation. For now I wish all of us a happy, healthy, and prosperous new year.
Diagnosis: Breast Cancer Part IV
Journal of a Woman Recently Diagnosed with Breast Cancer
Day 116 - January 14, 2010 - Thursday
I knew my hair would fall out. I expected that. I had read all the literature that came with my breast cancer diagnosis. But somehow, I hadn't realized just what that entailed.
What I noticed, just prior to significant amounts of hair loss, was a tingling sensation on my scalp and heightened sensitivity to touch. My scalp hurt.
But it wasn't just the hair on my head that was affected. My eyelashes and eyebrows are thinning at an alarming rate, and the small amount of hair I had left on top of my head is quickly disappearing. With two more chemo treatments to go before radiation begins, I can expect complete hair loss.
My eyes tear constantly as the eyelashes fall. I see my eyelashes thinning daily and it changes the way I look.
And so, for the first time in my life, I will try to manipulate an eyebrow pencil and I will have to purchase eyelashes. In two weeks, I'm supposed to fly to Virginia to visit my son. How will I walk through the airport with my eyes watering so profusely?
Day 121 - January 19, 2010 - Tuesday
I sit in my 5th chemo treatment as I write this. Before chemo I met with my oncologist. Something unusual is happening to me, and though I waited until today to bring it up, it started just prior to my last chemo treatment.
Having suffered from constipation my whole life, I'm used to going weeks without elimination. Usually, by the time it happens, I feel so relieved to finally be able to go.
Not anymore. The pain is so excruciating, tears well up in my eyes. It feels like shards of glass are scraping my rectum and ripping it to shreds. The toilet paper is filled with blood. Dr. Johnson suggested taking stool softeners. I already take two a day. She said to double it. The nurse, Deb, also suggested taking Benefiber. I will try both.
My eyelashes have become so scanty I can't even wear mascara anymore. My eyebrows are so thin, I've begun using eyebrow pencil. It bothers me more to lose my eyelashes than it does to lose my hair.
I had to purchase a compression sleeve today, because I will be flying to Virginia to visit my son and his family who moved there recently from San Diego. The compression sleeve will help prevent my arm from getting lymphedema, a problem that results for many patients who have had lumpectomies. Air pressure has become my enemy.
The woman who sold the compression sleeve to me suggested I wear it for any strenuous activity, too, because she had heard of lumpectomy patients who had gotten lymphedema after exercising. I have to say goodbye to jacuzzis too.
Day 134 - February 1, 2010 - Monday
Yesterday I awoke with lymphedema in my right hand. I don't think it was caused by the flight. I wore my compression sleeve when I flew to Virginia to spend time with my son and his family. Ever since my surgery, my hand has felt as if a vein inside it, running all the way up to my shoulder, has been shortened and tightened. Bending my hand has been painful.
The night before yesterday was more painful than usual and I rubbed it to relieve myself of the pain. The following morning (yesterday), I awoke with lymphedema. Lymphedema is one of the side effects of lymph node removal.
Massaging my hand may have caused the lymphedema, because massage may or may not contribute to the condition, depending upon which web site you read. I guess I should be grateful the swelling doesn't run all the way up my arm.
Day 142 - February 9, 2010 - Tuesday
The swelling in my hand went down. I now know not to massage it or to get a massage on my right arm. The swelling could have been permanent. I've seen women with horrible cases of lymphedema where their arms and hands are so swollen they can barely fit them into sleeves. My hand is still painful, though, and I wonder if the pain will ever go away.
One of my new symptom has been bothering me a lot lately - excessive tearing. When I walked through the airport, I could barely see where I was going. I think it's because as my eyelashes fall away, I have nothing to prevent irritants from entering my eyes. It sometimes becomes so excessive my entire face is drenched with tears.
I'm still in Virginia due to a snow storm and flight cancellations. I was supposed to have chemo today, but I had to push it to next Tuesday. It puts everything back a week, but being here gives me more time to spend with my son and my grandchildren while his wife (their mother) spends time building a business in Illinois, so for that I'm grateful.
Day 144 - February 11, 2010 - Thursday
I should have had a chemo treatment this past Tuesday. Today is the best I've felt in a long time. I feel almost normal. I'm still in Virginia visiting my son, and except for my bald head and my loss of eyelashes and eyebrows, nobody would suspect what these past several months have been like for me. My eyes have stopped tearing. Hopefully that annoying symptom won't return.
My oncologist is booked for Tuesday, so my chemo treatment will be Monday instead. I'm not looking forward to the exhaustion. Being here in Virginia has been a really nice break.
Day 151 - February 18, 2010 - Thursday
Monday, February 15th, marked the last day of my "bad" chemo treatments. Today I am sluggishly exhausted. My conversation with my oncologist was filled with new insight into this terrible disease.
Constipation has always been a problem for me, but because of the chemo drugs and the nausea medicine, the problem has exacerbated. Even though I have introduced more fiber into my diet and have followed Dr. Johnson's advice about relieving the constipation, I was frightened by the amount of blood I found in the toilet bowl last Saturday.
She nodded, knowing that I was just experiencing another symptom that goes along with the cancer drugs. The pain has diminished though, and for that I am grateful.
Dr. Johnson's strategy for my continued care has changed. Instead of temporarily holding off on the chemo during radiation, I will continue the chemo through radiation. Dr. Johnson said that the radiation will be more effective if I get the chemo and radiation at the same time. She also warned me that the radiation will make me tired.
When am I not tired lately?
The good news is that after about a month or so, I should see signs of new hair growth. I should get back my eyelashes, and I should feel more energetic a couple of months after the radiation is complete.
So hard to believe that a year ago, I knew nothing of what my life would hold for me now.
Day 158 - February 25, 2010 - Thursday
My taste buds are almost working properly. For several days after chemotherapy, nothing tastes right and my tongue feels burnt. Today things taste almost as they should.
I've had a bout with asthma these past couple of days, so the energy I thought I would be feeling again escapes me right now. And for the first time probably since I was an infant, I am napping in the afternoon. While normally I would berate myself for interrupting all of my tasks, I can now take into account that I do, after all, have cancer, and when you combine it with asthma, maybe a nap now and then is OK.
Forgiving myself for not DOING what I feel I should be doing is coming more easily to me. I just cannot do everything I want to do and I have to remind myself that not only am I human, I am also sick.
I hate to think of myself that way though. My sister told me today that as she was reading my Facebook messages, she realized that nobody would ever know how sick I am because what I'm writing seems so upbeat. For that I am grateful. The appearance of good health is a positive affirmation of what is to come.
Day 165 - March 4, 2010 - Thursday
Today was a little disappointing. I expected that when I saw the radiation oncologist, my radiation schedule would be set and I could begin receiving radiation. However, because of where my surgery took place (at the base of my right breast close to the breast bone where the cancer was {yes, I'm positively affirming that it's gone} located), special precautions have to take place first.
Next week, on the day after I receive the new chemotherapy treatment, which will consist of Herceptin only (technically not a chemotherapy drug), I will be getting a CT (computed tomography) scan so that the radiation oncologist can mark the spots that outline where the radiation will go. The markers will stay in place for several treatments until the radiation oncologist is certain that the markings are correct.
The entire breast will be radiated, and the markers tell the radiologist where the cushions and molds should be placed so that every time I go in, the markers, which will eventually be tattooed on my skin, will remain the same.
Once radiation begins, I can expect the number of days I will be radiated to be longer than the originally anticipated 30 days. My radiation will go for 33 days.
I was sent home with a folder filled with information about what I can expect during radiation. Fatigue is one of the side effects, but I've been dealing with fatigue since I began chemotherapy. Another side effect, a cumulative side effect, is a burning sensation that may result in blisters.
The doctor warned me not to go in the sun for another year AFTER radiation is completed. According to Dr. Sapiente, 95% of the sun's rays filters through clothes, so even though my breast would be completely covered with clothing, I am not protected.
Day 200 - April 9, 2010 - Friday
Wednesday marked the midway point of my radiation. On the day of my CT scan, I was marked with four tattoos, each the size of a pen point. The reason I was marked so early in the process was because the marks had to stay in place for two weeks until my schedule was set for radiation. For ten of those days I visited my son and his family again in Virginia, so the doctor recommended tattooing in case the marks washed off.
Unfortunately, the markings, once radiation began, proved to be off their mark and I had to be tattooed once again. I now have eight blue pen-point sized tattoos to mark the spots where the radiation is delivered each day.
In addition to receiving radiation every day Monday through Friday, I will meet with the radiology oncologist once a week (usually Wednesday).
During radiation, I lie on top of a mold that was created especially for me. The mold is placed on a table that sits below the radiation machine. The radiation machine rotates around me, radiating first the far right side of my right breast under my arm (which is raised above my head) and then again at about a 45 degree angle (from my perspective) above my body to my left (with my arm still raised).
The reason the machine has to deliver radiation at an angle is because in the initial phase of radiation, protons are being radiated into my body. If the radiation faced directly into the place where the tumor originally resided, the organs and tissue directly beneath it (my lungs especially - due to a history of asthma) would be severely compromised.
The simulation took about 45 minutes; the radiation itself takes only a few minutes after the radiologist technicians line me up using my tattoos to guide them.
Every morning and every night I apply a radiation gel to the entire area that gets radiated. That area includes a zone midway between my breasts around to under my arm close to my back and from about two inches below my breast to about an inch below my collar bone. So far I am unaffected by the radiation, except for feeling somewhat tired.
Unlike the extreme exhaustion I felt during the initial six chemotherapy treatments, this kind of tired requires me to nap occasionally, but when I awaken I feel refreshed. During the "bad" phase of chemotherapy I was completely exhausted always.
Radiation treatments will continue throughout the month of April. In May I will receive what is termed as Electron Boost Treatments which will continue until May 12 when I will have my Exit Exam. At that point electrons, rather than protons, will be radiated into my skin, and because their reach is minimal, the machine will point directly at my tumor, head on.
I have already received one Herceptin infusion during radiation. I will receive another infusion of Herceptin on April 20th. After radiation is over, I will continue continue receiving Herceptin through next October.
Day 220 - April 29, 2010 - Thursday
The effects of the radiation are beginning to bother me. My skin is burnt and the nipple on my right breast is extremely sensitive. My clothes hurt when I move.
I have a rash on my chest and even the area under my armpit that is getting radiated is painful. Though I still have no feeling in certain areas on the back of my arm and under my arm (due to lymph node removal), the areas where I can feel are painful. Ever since the surgery, I've had a pain on my right shoulder blade too. I hope that disappears in time.
I am using the radiation gel the radiology oncologist suggested. I'm sure I would be in much worse shape if I hadn't been using the gel day and night. But today was only my 27th treatment. With six more treatments to go, I'm wondering how much more radiation my skin can handle.
The good news is that beginning in May, my boosts begin. Boosts radiate only the portion of the breast where the tumor was actually located. So instead of the entire breast being radiated, only the area where the surgery was performed will be given radiation treatments.
Another positive effect of the boost radiation is that where my breast is going to be radiated will be entirely free of pain - I have no feeling whatsoever in that area.
People have been asking me what type of breast cancer I have. Up until now all I knew was that I had the Her-2/Neu Positive type, so I asked Dr. Sapiente what type I had - invasive ductal carcinoma-Stage II. Cancer has five stages from Stage 0 through Stage 4.
Day 234 - May 13, 2010 - Thursday
I didn't realize until May 1st, when the boost portion of my radiation began (I had to have another simulation prior to the actual boost radiation), that the oncologist had expanded my treatments to 36 instead of 33. I hadn't counted the days, because we skip weekends. So May 11th was my last radiation/chemo combination treatment. Yesterday, May 12th, was the last day of my radiation treatments.
During the boost phase of the radiation, the radiologist technicians attach a cone to the radiation machine. At the bottom of the cone, they insert a bolus, which was created for me according to the specifications they received from the simulation. The machine pulls in very close to my breast and, to get the proper alignment, technicians draw (with a marker) an area around the boost spot to match the shape configured in the bolus. When showering removes portions of the drawn-on area, the technicians re-draw the area.
Except for my chronic insomnia, when I am up until 3 or 4 in the morning 3 to 4 days a week, and my ever-present constipation, I manage to cope. The nasty side effects of the original chemo drugs no longer affect me. I feel blessed that the area where the boost was delivered is numb. Dr. Sapiente, my radiation oncologist, and his nurses warned me that the radiation effects will linger beyond the end of radiation. Fortunately I have no feeling in the area where the boost was delivered. If the skin becomes cracked or infected I will feel no pain.
The fact that I can't feel anything presents another problem, though, because I have to watch for infections. I won't suspect any problems unless I look at the area that was radiated. Already my skin is peeling from the proton form of radiation.
Dr. Sapiente told me to discontinue using the radiation gel and start using a powerful moisturizer like Eucerin now that radiation is over. I am using their Fragrance-Free "Dry Skin Therapy Plus Intensive Repair Enriched Lotion."
I mentioned to Dr. Sapiente how uncomfortable the lumpectomy area is. What was once a 4 cm wide tumor is now scar tissue of about the same size. Because it sits below my right breast and because it feels like a boulder pushing against my chest wall, I am always uncomfortable and always aware of its presence. I was hoping he would tell me when that feeling would disappear. Sadly, I found out it wouldn't.
I can't lean forward or lie on my back without feeling the pressure of the scar tissue. It feels as if somebody has placed a heavy rock on my chest and wrapped a tight bandage around it. It's annoying. I hope I'll get used to it.
On a positive note, my hair has begun to grow. It's about a quarter of an inch long right now. I still don't know if it will come in curly or straight, but I can see that it is the same color it always was, mostly white with black. I once referred to my hair color as skunk. I no longer refer to it that way. I have a new-found respect for hair of any color.
My Herceptin infusions will continue every three weeks through October, 2010. I will have to have another mammogram as soon as my breast heals from the radiation.
Day 235 - May 14, 2010 - Friday
Part IV of my journey is complete. I reflect on last May when my mammogram was clear. I didn't notice the lump until September, 2009. I couldn't have waited another year for a new mammogram.
During this process I've met lots of wonderful people, from the doctors and nurses to technicians and schedulers. I've also spoken to many patients.
What's interesting about radiation is that a lot of the women I met are receiving radiation because of a suspected cancerous tumor. Not everybody who receives radiation has cancer, though many of them are considered to be at Stage 0. According to
breastcancer.org, "In stage 0, there is no evidence of cancer cells or non-cancerous abnormal cells breaking out of the part of the breast in which they started, or of getting through to or invading neighboring normal tissue." So those at stage 0 get radiation to prevent the cells from becoming cancerous.
My breast cancer journey continues. To read previous articles about my experience with breast cancer, please click on the links at the beginning of this article. I will continue to write about my recovery from beast cancer beginning with Part V that will continue the saga starting with another MUGA scan I am scheduled to receive on May 25, 2010 (to find out what a MUGA scan is, read Part I). The MUGA scan will determine whether or not my heart has been affected by the chemotherapy and radiation.
For more information about breast cancer, please visit
breastcancer.org, the
National Cancer Institute, or the web site of the hospital where I am currently receiving treatment, the Mills Breast Cancer Institute.
Diagnosis: Breast Cancer -- Part V
Journal of a Woman Recently Diagnosed with Breast Cancer
Oct 5, 2010
October is Breast Cancer Awareness Month
May 25, 2010 - Tuesday
Today I had another MUGA (multigated acquisition) scan. Either I don't remember the first one I had or the one they gave me today was totally different from the one I received earlier in my treatment. (In Part I I discuss MUGA scans, and I had to read the excerpt again to remind myself that what I had previously experienced was the same then as it was today.)
September 23, 2010 - Thursday
The results of the MUGA scan were good. One valve was operating at 60%; the other at 68%, so Herceptin infusions were not adversely affecting my heart and treatment could continue as planned.
When radiation ended several months ago, I continued to receive Herceptin therapy every three weeks. Today I sit in the infusion room, celebrating (if you consider receiving a treatment and being stuck with a needle celebrating) my last day of chemotherapy.
My breast cancer journey began over a year ago when I first discovered a lump that turned out to be cancerous.
Several articles (links are provided at the beginning of this article) detail how I first discovered the lump, what a breast cancer diagnosis entailed, and how surgery, chemotherapy, and radiation affected my life. The support, encouragement, prayers, and comments I have received throughout my breast cancer journey have been overwhelming and they have touched me deeply.
Though readers tell me they consider my breast cancer articles to be helpful, some readers have expressed a desire to read a more emotional account about what it feels like to have breast cancer.
So for them and for anybody else who has been given a breast cancer diagnosis, I will confront my feelings about having breast cancer.
Often, throughout my life, I've asked myself, "What would you do if...", to decide how I would or would not respond to certain situations if they ever arose.
I decided I could handle having cancer, for instance, but I could not handle losing a child or a grandchild to cancer or any other disease or mishap. I could handle losing my home to a tornado or my car to auto theft, but in terms of property, I didn't have much to lose - losing a mobile home or an old car that is in desperate need of repair is not really losing much.
So using the, "when you don't have much, you don't have much to lose," concept, when I found out I had breast cancer, I couldn't help but wonder - if I had to lose a breast, would anybody notice?
Maybe I don't handle crises the way others handle them. I'm not one who "takes charge" when a trauma occurs. When something shocks my system, my brain misfires in a million directions and I am incapable of gathering my thoughts together to form a cohesive sentence, let alone a thought.
My initial reaction to hearing anything disturbing is to first, freeze - my body's way of dealing with shock, I guess - and then to joke about it. Maybe I comes off as being irreverent, but my natural inclination is to find humor in situations that feel uncomfortable to me. So it was no wonder to anybody who knew me and talked to me during the initial stages of breast cancer that I resorted to humor.
A song by Dusty Springfield, who ironically died from breast cancer, popped into my mind. "Left alone with just a memory," became "Left alone with just one mammary," along with dozens of other thoughts that collided at the same time.
The word cancer itself can be frightening, but I honestly wasn't afraid about having cancer. I had found a lump and I convinced myself it was like every other cyst I'd ever had, though I had to admit, even to myself, that it was quite a bit larger than my other cysts.
My May 2009, mammogram was clear. Now it was September 2009, and the lump was the size of a marble. How could something go from nothing to that size in a matter of four months? And if it was cancer, how would I be able to afford to take care of it? I had no money.
All of my daycare kids, with the exception of one, left for various reasons (to go to school, mom decided to stay home, mom got a new job, etc.) so I was left with only $650 a month, nowhere near what I needed to support myself.
Just prior to finding the lump, my son, his wife, and their kids, who at that time, were stationed in San Diego, California, sent me tickets to visit them. Instead of thinking about the lump and what it might represent, I went ahead with my plans. In the two weeks I was with them, the lump had grown to 4 cm wide. I hid my concern. But for something to grow so significantly in such a short period of time was alarming for me.
I sincerely was not afraid for myself, but I was terrified of telling my family and friends. The stress of harboring that kind of secret is difficult to describe. How should I tell them? When should I tell them? Should I tell them at all? Should I wait until I know what the lump is?
Those questions haunted me. I couldn't keep them out of my head. It was just a lump, I kept telling myself. Try not to think about it.
But I had to think about it. My son lived so far away, that because I wouldn't have it checked out until my return, I didn't want my first mention of the word cancer to be told to him over the phone it it turned out that I had breast cancer. I mustered the courage to tell him and his wife about the lump on that visit in September. And because I told them, I had to tell my daughters, too.
But I didn't tell my parents or my sisters. If it turned out I had breast cancer, only then would I tell them. Everybody handles things differently and a couple of my family members would have been unnecessarily traumatized (though relieved) if it turned out I didn't have cancer after I told them I might. I didn't want anybody to worry unnecessarily.
Waiting for the results was like waiting for a baby to be born who was overdue. But when the diagnosis came, my oncologist told me in a very straight-forward manner, over the phone, that I had breast cancer. I was grateful she didn't require me to wait for an appointment to tell me.
I don't remember much about what happened after I heard those words. I do know, though, that when I hung up, I just sat there and thought about what my next step should be.
Everything in the world but my mind stopped spinning, and my mind spun out of control.
Though I hate to admit it now, confronting this part of the journey is the most uncomfortable for me to relate - I actually considered allowing the cancer to run its course, because I had no money and I didn't want to ask my family or friends for financial help. Unaware of just how aggressive my cancer was, I thought I could live the rest of my life without telling anybody about the cancer and without getting treatment for it.
Unlike Jimmy Stewart's character in, "It's a Wonderful Life," I wasn't worth more dead than alive. My financial worth was nothing either way. I couldn't afford to live; I couldn't afford to die. I didn't want to burden my children with expenses related to my death. And I had a difficult time trying to figure out how I would prepare my family for a life without me.
Strange as it sounds, I actually imagined a world without me in it. I felt the sadness my children and grandchildren would feel. I saw my parents, my sisters, and my friends grieving. But I still couldn't bring myself to ask them for money, so I prepared myself for the consequences, concentrating on how I would act. I am not one who hides her feelings well, however. Somebody would have known something was amiss.
My thoughts were consumed with what to do, what to do, what to do. I knew my family and friends would want to help with the finances, but I didn't want to be responsible for all of them losing their homes because of me. The stress of knowing that one decision will impact so many loved ones was too much pressure. I walked around in a fog.
But somewhere through the mist, I decided I wanted to live, and I prayed that some agency somewhere was available to help people like me, people who lived below the poverty level. I called every imaginable organization that came to mind, asking for referrals or suggestions, hoping one of them would offer me hope.
As one who believes in miracles, I shouldn't have been surprised when one appeared. Somebody from the
Illinois Breast and Cervical Cancer Program called me to tell me that because of my financial situation, I was eligible to receive financial aid for my medical care. I had gone through them for my initial mammogram.
I can't begin to tell you how relieved I was to know that I wouldn't have to die from this disease just because I couldn't afford to live. But I also couldn't help but wonder how many women (and men) die only from lack of funds.
I had already prepared my kids for the possibility of my having breast cancer. Now it was time to call them. I wanted to present as positive a picture as I possibly could, because I didn't want them to be afraid. And to be honest, I wasn't afraid. I wasn't even a little afraid of having breast cancer. Because I was so completely ignorant about what a breast cancer diagnosis entailed, I wasn't afraid of the treatment I would receive, nor was I afraid of losing a breast. And I never once thought, after I made the decision to get treatment, that I could die from breast cancer.
As a matter of fact, I couldn't understand how anybody could die from breast cancer with all the new treatments available. I thought about Dusty Springfield and Linda McCartney. It had been a decade since they had died from breast cancer. Surely things were better now.
But then Lyn Redgrave died from breast cancer on May 2, 2010, and for the first time since I was diagnosed, I became a little afraid, because I knew the type of cancer I had was aggressive and had a high recurrence rate.
Lyn Redgrave was still alive though, when I met my parents, sisters, and brother-in-law at a restaurant for lunch a year ago. We had been planning the get-together for several months. I waited until the end of the meal to tell them that I had something important to tell them. I asked them to remain positive, I reminded them that it wasn't a death sentence, and I insured them that I intended on beating it. We hugged. I left. And I thought.
I later found out that my family took the information much harder than I did, and, after talking about cancer with other cancer patients, I am convinced that cancer is far more difficult on loved ones than it is on the person who has cancer.
A woman who accompanied her mother to her radiation treatments while I was receiving radiation, told me that nobody in her family knew about her mother's cancer, and that even her own mother, the cancer patient herself, didn't know she had cancer.
We discussed the trauma of knowing about cancer and not knowing what to do with that information. She had kept her secret from her family, because she didn't know how family members would react if they knew her mother was dying from cancer.
I could see the stress on her face. Do you tell or do you keep it a secret? That quandary is probably the hardest question cancer patients or their relatives have to answer.
Telling people I had cancer was one of the hardest parts about having cancer for me too. I didn't want people pitying me, and I didn't want my relationships with them to change. I did, however, want their prayers, because I firmly believed (and believe) that if anything was to put me in remission it would be prayer.
The first six chemotherapy treatments were grueling. The struggle just to get out of bed was so overwhelming that every step I took was difficult. Every time I had a treatment, I was exhausted for a couple of weeks after each one. I felt as if the chemo had put an elephant on my back - even a walk to the bathroom was exhausting.
The surgery itself, the lumpectomy, was tolerable. The lymph node removal, however, was excruciating. I still can't feel anything under my arm. Painkillers helped, but I will probably never again have feeling under my breast or under my arm. I can live with that.
Lymphedema could occur if I forget to wear my compression sleeve on a flight, and another potential problem I can foresee is getting harmed and not being able to feel it. A bee sting, for instance, would endanger me without me ever knowing I had been stung.
Ever since I first found out I had cancer, I have been telling myself that this part of my life is temporary, and yet in the back of my mind, because of the high recurrence rate for this type of cancer, I can't help but wonder if I'll have to go through this all over again.
When the radiation started, 36 treatments in a row, I felt as if I were on autopilot. Every day I drove to the hospital and little by little, I felt my energy deplete again, not nearly as bad as it was during the initial phases of chemo, but enough to send me to bed again and again.
My appointment book is filled with dates and times and doctor's names. Only twice did I miss doctor appointments. The first was because the appointment was made after the hospital had already given me a printout. The second was because when I stress about money, my mind flits about in my head with worry and I forget sometimes, I think, to breathe. I completely forgot to go to one of my chemo treatments.
Thankfully the Mills Breast Cancer Institute, which has been holding my hand throughout this whole ordeal, calls me when I miss an appointment. You won't find a better group of people than the nurses, doctors, and other employees at the Mills Breast Cancer Institute. They made my appointments, explained the procedures, handed me printouts, and made the journey more tolerable.
As far as physical problems are concerned, I have to accept the fact that one of my breasts is permanently deformed, and the scar tissue under my breast and all the way back to an area under my arm is void of feeling. The lump I once had has been replaced with scar tissue - a rock-like consistency of the same size. I can no longer wear a bra, because it cuts into the hard tissue.
Maybe because of my age, I'm not concerned about dying from breast cancer. I sometimes feel as if I've lived a hundred lifetimes in this one life already. I would miss terribly all of the people I love, but I also understand that one day I, like every other person on this planet, will die.
I have been blessed with four children, ten grandchildren, two great-grandchildren, and one great-grandchild on the way.
I feel as if I've been able to cope well with breast cancer because of my age and because of everybody who has helped me get through this part of my life.
Sometimes I wonder if I seem weird to people, because I'm not as concerned about the cancer as others appear to be. I'd like to say that nothing scares me, but that's not true. One thing does. Perhaps, if I didn't have asthma, cancer would have frightened me. But I'm convinced that the reason my cancer doesn't bother me is because my asthma has always terrified me. I'm more afraid of being unable to breathe than I am of anything else.
Even dying doesn't scare me as much as does the process of dying.
To be honest, I am concerned about getting breast cancer again. Because of the aggressive nature of this particular form of breast cancer, and because of its high recurrence rate, I can not consider myself to be in remission until five years from now.
I have already begun to take a drug, Anastrozole (generic form of Arimidex), that has proven to be effective for people with my type of cancer. I will take this medication every day for five years. After five years, if I have no more recurrence of breast cancer, I can consider myself to be in remission. Five years seems like a long time, but I welcome each day because every day I am one day closer to being in remission.
Before I went through this process, I was completely ignorant about what a breast cancer diagnosis entailed. Now that I know what I had to go through, if I ever get this disease again, I will probably opt for a double mastectomy. The process has been long and slow and difficult for my family and friends. I wouldn't want to put them or me through that all over again.
Thank you for accompanying me on my journey through invasive ductal carcinoma (breast cancer). I hope my experience has helped you or a loved one understand some of the terminology and some of the feelings associated with a diagnosis of and treatment for breast cancer. My next update will appear in October, 2015, when I will be (hopefully) in remission.
In memory of all women who have died from breast cancer, including the following, please give yourself monthly breast exams:
Linda McCartney on April 17, 1998
Dusty Springfield on March 2, 1999
Lyn Redgrave on May 2, 2010
