Everyone Has Something

It was early on after my parents' accident and I was going about my day on autopilot:  get kids ready, go to hospital, get kids home, go to karate, dinner, homework...  I was hardly present in the moment. My mind was focused on my parents, getting to the next the next thing, and having this little lump and wondering if it was something worth worrying about.

I had a moment where I felt like I was all alone with my experiences.  No one had ever had all this happen at once, had felt overwhelmed, had all my family members hospitalized.

It wasn't right away, but soon afterwards it occurred to me, probably no one else was in the same place as me.  However, everyone has their thing.  Everyone has something in their life which is hard and overwhelming and feels the most challenging right now. It is different for each person.  But it is hard for them and that is the key. We all know hardships, they are just different.

It might not be them personally, it might be a spouse, parent, child, close relative, or good friend.  No one is alone in their "suffering," some may just choose not to share.  I find it helpful to remember when out in the world.

The Radiation Decision

I have some concerns about the long term effects of radiation therapy.  Radiation therapy is the standard of care for someone like me who had a lumpectomy.  But I am 34 years old and I hope to live many, many more years.  I searched and I could not find good information about the potential long term effects.

One thing that is good is that it is my right breast. If it were my left breast, my heart would probably receive some radiation which could lead to problems down the road. In my situation a partial mastectomy followed by radiation would be considered the same treatment as a full mastectomy. 

Early on in my research I discovered that radiation targets active cells.  Lactating breasts are very active and that radiation might actually damage the breast more if I was lactating.

Some people believe with radiation that one is able to “keep their breast.” After being surgically altered and radiated, it’s really quite different than before and not functional in the same way.

In order to help make my decision, I sought the opinions of two radiation oncologists.  Both assured me that radiation would be an acceptable decision for me.  I actually went through the planning session with one of them and had a CAT scan and received my tattoos.  Black Indiana ink is injected just under the skin marking where the CAT scan and later the radiation machine should line up.  The black ink appears as small blue dots.  My radiation oncologist was able to show me where the radiation field would be, which part of my lungs would be hit, which ribs, etc.  

Initially I felt I would just have a mastectomy and be done.  That would give me simple and straightforward surgery with a very short hospital stay.  I could get back to my family and be done.  It's interesting to me that many woman have gut reactions when they are diagnosed to just go ahead and have a double mastectomy.  I never felt that way.  As I started to really consider a mastectomy, I felt I probably would feel better getting some sort of reconstruction.

In order to complete my research, I decided to meet with a couple plastic surgeons.  If I really wanted to compare my options, I should know what my options are.  The first plastic surgeon offered me an implant.  The second offered microsurgery of a flap of my thigh to create a new breast mound.

Part of my thinking brings me to the end result and not the process and what I'd like to be done and I usually come to the surgery. The process does not sound great, but the end result should be a better outcome in terms of cancer for me. 

The Breast MRI

Initially I was not offered a breast MRI as I was lactating.  The doctors felt that I would likely light up everywhere and the test would not be helpful.  It was not until after weaning and chemotherapy when I experienced my first breast MRI.  

As I was trying to gather as much information as possible regarding my decision to have radiation treatments or a mastectomy, I felt a breast MRI might aid in my decision making process.

I had never had any kind of MRI, but had heard about the small confines of the tube. It's pretty small. For the breast MRI, one lays face down on a flat surface with cutouts for the breasts. After some time, it becomes rather uncomfortable. The head is either to the side or looking down on a cutout. I did head to the side with pillows. Arms are above the head, but hands cannot touch;  a paper towel was laid between them. The room is very cold for the machine so lots of blankets are available too. Earplugs are highly recommended because the machine is so loud, clanking, alarm like sounds, banging. The tech and nurse are in another room accessible by intercom and a special button. When the machine is going, there's no communicating really - it's much too loud. There were series of imaging, five I think. Each one was a few minutes to seven minutes. It's very important to stay still all the time, even between imagining as not to get out of position. After the first two sets the nurse came in and injected contrast dye into my IV for the next sets. At the end they had me wait one more minute to make sure everything looked ok. By that time my neck and back were aching. Finally I got the ok to wiggle and promptly banged my head, elbows and back on the tube forgetting how small it really is. The whole thing is supposed to take about 30 minutes.

I got the results of the MRI the same day in the evening. The left breast looks great and there is one 6mm area of potential concern on the right. It’s hard to know what it is so the Dr recommends an MRI guided biopsy with contrast. This area is likely scar tissue due to my past surgery.  If I go ahead with a mastectomy, I don't see any reason to have a biopsy.  If I will pursue radiation therapy, I would need to address this area of potential concern first.  

Life Goes On

The weekly chemo treatments seem almost normal now.  The day before I make sure to drink extra water to keep my veins hydrated.  Before I go, I take a warm shower and keep my arm warm.  Getting an IV every week seems normal.  

After my first surgery, I was offered more surgery to have a port.  I was thrilled to make it through the first surgery without general anesthesia and I hoped to be done with surgeries.  The nurses who administered the chemotherapy certainly seemed to prefer ports.  I decided I would consider a port if we no longer could start an IV in my arm.  I had a lot of IVs ahead of me and needing to do all of them on one arm was certainly a concern. 

Many times with chemotherapy, the patterns of side effects seem to become predictable.  Certain days are "down days."  I found that I would get a strange achiness in my upper arms and chest for a couple days and the fatigue was always there.  It's a strange fatigue, one that doesn't get better after a nap.  For most chemo drugs, hair starts to fall out starting on day 14.  I was on hair watch and my hair didn't start then.  It wasn't until day 22 that showering became more messy and if I touched my hair ten or more hairs came out.  But I never had large bald patches, just thinning mainly in the crown area.  So I didn't shave my head.

Each chemo appointment was about the same, first a blood test is done at least an hour in advance. Usually I would go in the morning when I have afternoon infusions. It's just more convenient for me and my daughter can come along.  The blood test is to mainly see how my white blood counts are. If they are too low, I can’t have the Taxol.

Then to the IV…depending on the nurse (so far I’ve only had women), she’ll either warm up the arm or just get started. My favorite nurse always just gets started. One time I actually had to wait 45 min for someone to get started. There were mini-emergencies going on and nurses were all occupied. 

I get started with the IV and then get my pre-meds. I get Pepsid in one bag of IV fluid, then it is switched with a nurse. Sometimes there is wait time between switches too. Then comes an IV bag of Benedryl and Decadron. I have worked with my oncologist to lower the doses of Benedryl and Decadron.  I seem to do fine with the Taxol and I really don't like the side effects of these two drugs.  

Then I get a big bag with Herceptin. That takes between 30 min and 90 min. The first one is 90 min and then we’ve decreased each time. Lately it has been 30 min and that is good. Although I need to have my blood pressure taken multiple times on the same arm as the IV. It doesn't feel too good while I was getting Herceptin. It burns during Taxol, so we pause the IV during Taxol. After Herceptin comes a big bag with Taxol. That takes 1 hour. After the Taxol and sometimes at other times I may get switched over to a plain saline IV bag. After my “rinse” my IV is removed and I’m free to go! So far these treatments have lasted 3-4 hours, but could take closer to 2 hours theoretically.

During all this time, there are lovely people coming and offering drinks, lunch, fruit cup, cookies, ice cream. There is a nice tech who comes to take my blood pressure and chats. I think it’s done four times at least. Temperature is taken each time too. I sit in a comfy recliner, often somewhat reclined and there are recliners in front of me, diagonally, and to each side. Each one has curtains nearby, but almost never drawn. Some people visit and many sleep. There are personal tvs for each people with earphones. I bring my new MP3 player and listen to music for part of the time. I have a nice blanket and warmed blankets are also offered. It’s a bit entertaining to go to the bathroom, if I’m listening to my music, I have those wires, IV tubes, the IV pole which has to be unplugged from the wall.  My husband is often doing work on his laptop and sits in a folding chair next to me. I get some computer time too and can use the phone, look out the window, and rest.

Every 3-4 weeks I see the medical oncologist who just checks in to make sure everything is going well. I can also call or email her. There are also triage nurses who are available during the week for calls about just about anything.

Wig Research

Who knew that I would be learning about wigs and considering losing my hair.  Many women seem to struggle with the thought of losing their hair and I did too.

I can't imagine not being a redhead, it would be strange.  In learning about wigs, I found a local stylist who sells wigs.  She had some examples which looked very similar to my hair and she could cut it so it would look even more similar.

Taxol usually has the side effect of losing one's hair, but it is also often offered in conjunction with other chemos.  I will wait and see what happens before ordering the wig.

It's funny how when considering losing ones hair, we do see it as a temporary situation..the hair will grow back.  Many women are deeply saddened by the experience.  When considering how long it takes for hair to get long again, it feels less of a temporary situation.

Starting Chemotherapy

We decided on twelve weekly treatments of Taxol and Herceptin.  I couldn't believe I was actually starting chemotherapy.  I'm fairly content with the decision to do only Taxol and Herceptin.  It makes sense.  Doing it weekly means that I will receive less drug each week instead of a triple dose every three weeks.  My oncologist feels that I won't really have "down" days.

With this whole experience, it really takes a human to be able to walk into surgery or walk into chemotherapy and know that you will be hurt, or get sick, but also know that these steps might just save your life.  It's a very strange concept.

Preparing for the first chemo was really hard.  I had weaned off the first breast for surgery.  Now I needed to step back production again.  Because my daughter was no longer a baby, we could talk about everything.  While she heard that I would be getting a medicine that would not be safe for her, that didn't mean that she really understood and could just let go of nursing.  It's ironic, she had enjoyed sucking her thumb and nursing up until the age of 2 when I could easily discourage her from sucking her thumb.  Now at 2 3/4, I was reminding her that she used to suck her thumb and she might like to do it again.

We had a last nursing, but really our last nursing without timelines and thoughts of drugs and surgeries happened long ago.  As we drove to the hospital, I cried, because again, things were out of my control in my life and with my children and I wished it wasn't so.

Yes, It's More Than DCIS

Oh the waiting!  Waiting for the surgical pathology was forever.  I knew it would take at least a week, but the final few days of waiting took forever.  I didn't want to miss the call either.

From the beginning I wondered if the lump was more than DCIS and this pathology confirmed that it was, inside the 1.4 cm area of DCIS was a .6cm area of Invasive Ductal Carcinoma (IDC).  This was potentially a game changer.  With DCIS, I hoped to return to my life...with invasive cancer, I knew I would need more consults and possibly chemo.

This was when it really began.  Many women have a defining moment when they are told, you have cancer.  I never felt that I did.  It was nothing, then something, then something more.  But even with a six millimeter area of invasive cancer, I was in the grey area of what to do.

Once again I set up multiple appointments with medical oncologists.  I was somewhat surprised that each one recommended some sort of chemotherapy.  My options were the standard Ardimyacin with Cyctoxin followed by Taxol and Herceptin (AC + TH), or a newer option that proved to be less heart toxic Taxotere, Carboplatin and Herceptin (TCH), or a minimalist option of Taxol and Herceptin.

Chemotherapy was recommended due to the fact that I was under 35 and the characteristics of the cancer were more aggressive.  Because so much of my world at that point was babies and pregnancy, I thought it was interesting that in the cancer world, 35 is so young.  In the pregnancy world, 35 is old!  I was 34 and thoughts of more children danced in my head, not wanting to prematurely wean my child, and just wanting to be a mom to care for my children.

After much deliberation, I decided to go for the chemo:  twelve weeks of Taxol along with Herceptin.  Then Herceptin would continue for another three to nine months.