The Golden Token

So much like a quarter, similar in size and weight, I even keep it in my wallet. Its presence carries hidden meaning. This unique token is for the “special” parking lot at the cancer center. It grants me entrance to a small lot near the cancer center, a branch of the hospital. After my first visit, the receptionist asked if I’d ever be back. I answered yes, I’d be back and she gave me my first token. Since then, I’ve always had at least one golden token in my wallet waiting to gain access to the special parking lot. Sometimes when looking for change, I spot the golden token and remember when I’ll need to use it again. I don’t know when I’ll be done having golden tokens in my wallet. I’ll need them for my follow ups with my oncologist pretty regularly for at least two years. I imagine I’ll see her at least annually for a long, long time. It’s amazing how something as ordinary as a coin can hold such meaning for me. It signifies cancer and how it is now a part of my life.

Follow-ups, Follow-ups

My first reaction at the mention of cancer was sadness that I would need to go to more doctor appointments.  I don't think I could have imagined how many appointments I would actually need to attend.

Before even starting chemo, I needed to have an Echocardiogram to check on my heart.  I was to receive Herceptin which can sometimes cause cardiotoxicity and effect the ejection fraction of the heart.  After this initial check, I would continue to have checks every three months during the year of Herceptin treatment and a final follow up.

In making the many decisions for chemo treatment, surgery, radiation, and plastic surgery, I found it helpful to be as educated as possible.  Part of my education came from seeking multiple doctor opinions.  Not only did they present different opinions sometimes, they also talked about treatments in different ways.  I really appreciated having the opportunity to meet with so many talented doctors.

Once I was locked into a treatment, I would have regular appointments at predetermined intervals.  Pre-Ops and Post Ops, then every three months, every six months, finally annually.  These regular appointments were with the breast surgeon, the plastic surgeon, the medical oncologist, and the radiologist at the breast imagine center.

For chemo, I had twelve weekly treatments of Taxol and Herceptin.  Before each treatment, I would need to have a blood draw.  Often patients are scheduled to have a blood draw and then wait an hour, then receive treatment.  Because I wanted to minimize my time away from my toddler, I opted to have a blood draw in the morning with my toddler in tow, and return later to have my chemo.  After completing the twelve weeks, I continued receiving Herceptin regularly for another nine months.  Initially, I received it every week, then I switched to every three weeks of a higher dose.

Recovering from Breast Reconstruction Surgery

The surgery lasted four hours, that was the best case scenario.  I didn't realize that I would not be able to eat or drink for another 24 hours after the surgery.  This is a precaution in case I needed to head back into surgery.  I am tired and not interested in the pain medications they are offering.  I don't notice much difference in my pain, which is little, but I am hypersensitive to everything.  With the morphine, I am regularly startled by the things going on around me.

Day 2 
I am allowed a liquid only diet.  I still feel quite nauseous from the anesthesia.  It comes and goes though.  I have a local anesthetic pain pump for my leg incision which I guess is working ok.  My breast area is numb and pretty comfortable.  I feel some discomfort in the muscle at times.  One of the sore spots I keep noticing is at my sternum.  The doctor needed to cut a bit of my rib at the sternum in order to connect the blood vessel.  I have a broken rib and it feels broken.  I don't like the narcotics and have requested only Tylenol.  I am able to walk around and get to the bathroom ok.  

Day 3 

Finally some food!  I still feel bits of nausea, but food helps.  I have been ok'd to add Ibuprofen alternating with Tylenol.  Passing the 48 hour window of recovery means the flap is probably going to be just fine.  The doppler checks are spaced out and it looks like I will be leaving tomorrow on schedule.

Day 15 post op

Day 4-10
I am healing and walking around the block and feeling well.  From time to time I feel exhausted and need to rest.  My surgical areas are healing well, though I still need the three drains though.  On day 10, it's time for Herceptin again and it goes well.

Day 16
Had my "2 week follow-up" at the plastic surgeon's office.  It is still recommended that I restrict my lifting another week or so.  I can move from no bra to wearing a stretchy bra with no cup.  They still recommend keeping the donor area of my thigh wrapped in an ace bandage for compression for another one to two weeks.  There are more sensations coming back to the breast area and I have a hard spot above.  Physical Therapy would be a good idea down the road.  At home I walk twice around my neighborhood totaling 1.2 miles.  My gait is normal, the pace is getting faster, almost normal.  My daily schedule is getting more normal as well.  I can go to my appointment, the library, visit a friend and no longer need an afternoon nap.

Surgery #2 - TUG Flap Reconstruction

My surgery will entail a mastectomy. While my general surgeon is doing that, the plastic surgeon (ps) will be removing skin, tissue, fat and the gracilis muscle from my inner thigh. He will cut the blood supply and prepare it to become a breast mound - that is what they call it. After the mastectomy (removing all breast tissue, nipple, and areola), my general surgeon will leave. The mastectomy will take about an hour. The plastic surgeon takes over now. He will spend the next 3 hours doing microsurgery to reattach the blood vessels, create the illusion of a breast and sew/glue everything back together. The total surgery should take about 4 hours.

After surgery I will be in the ICU or a step down from the ICU. This is only because the new breast needs to be monitored every 1-2 hours for two days. The temperature, pulse, and color will be carefully observed. I have been told that the minimum hospital stay for this procedure is three nights. I will be having a pump of local anesthetic pumped into my thigh for pain relief. I will also have IV pain medication. Though many people do not report as much pain in the breast area because all the nerves have been cut.

At my pre-op appointment today I learned more about anesthesia and what drugs are used for that. I will be fully asleep, my muscles will be realaxed and I will have a ventilator for breathing and bringing in gas anesthesia. As always, I feel more comfortable and confident with more information.

I feel confident in my two surgeons and will allow my body to be changed by them. I will also make a conscious decision to allow the medications to come into my body and do what they are supposed to do. 

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.