Diagnosis: Breast Cancer - Part II

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.