Nipple tattoo!

 When I was initially diagnosed, I regularly attended informational sessions about different aspects of breast cancer. I remember one evening session featured my plastic surgeon discussing the reconstruction process. Nipples and tattooing were the final step. The surgeon mentioned that some women don't finish the process, but that for him and his colleagues the process wasn't complete without the nipples. Not only does it bring back some sense of normalcy, it also brings attention away from scarring.

After my reconstructed nipple healed, I was able to have nipple and areola tattooing. When I was first diagnosed, I became familiar with one tattoo artist who created the most realistic nipples I had ever seen. She works out of a shop and also used to work at a plastic surgeon's office. Because it had been over a decade since I first looked into nipple tattooing, she was no longer working at a surgeon's office. I decided to still go with her and pay out of pocket. 

For tattooing, it's a benefit that the "breast mound" has virtually no sensation. For standing in pictures and not knowing you are actually brushing up against someone's back, it's less beneficial. The process was pretty cool. The artist set up her colors and had me remove my top. Because the goal was to match my original nipple, she kept checking colors and mixing along the way. She asked questions like, would I like Montgomery glands tattooed? I was going for a natural realistic look, so why not?! She also measured and marked. I'm still in awe of her talent and ability to recreate a very realistic nipple and areola.

I followed the tattoo aftercare and haven't really looked back. I knew that seeing the absence of a nipple was something I noted almost daily. The addition of a nipple is something I barely see anymore. My brain sees symmetry and doesn't need a second look. There's nothing to note and while my original parts are not the same, they almost look the same.

Delayed Fixes

When I was diagnosed with breast cancer fourteen years ago, being inundated with endless doctor appointments was one of my biggest concerns. Cancer should have been the main priority, but life keeps marching on and cancer and its many necessary appointments are time consuming. When I was making surgery decisions, one goal was to have the least disruptions. Lumpectomy plus radiation versus mastectomy was at the top of my pros and cons list. Somehow a three day post flap hospital stay was the winner and felt easier to fit into my life than thirty individual radiation appointments.

The biggest goal of a flap procedure is to have the flap survive. The surgeon knows that minor fixes can happen later to improve the shape of the breast mound. Whenever I pictured these minor fixes, I pictured surgery with general anesthesia. A three phase plan for reconstruction was a concept I had heard about, yet my surgeon never discussed it explicitly. I would simply follow up with some regularity and then return to my regularly scheduled life when I had healed.

Thirteen years after cancer, my babies more grown and independent, I decided to look into fixing up my body. Naturally, I scheduled an appointment with my former plastic surgeon. Learning that fat grafting can occur as an outpatient procedure without general anesthesia was a happy surprise for me. Having fixes at this point in my life was a choice. Whenever I saw information about the reconstruction process, it always included a nipple as the final step. I too wanted to feel more finished, though I had an indentation that I felt needed to be addressed first.

Armed with new information, I scheduled fat grafting. Like many experience, one round of fat grafting was not enough. The decision to sign up for liposuction is not a small one and needs careful consideration and planning for downtime. Liposuction bruising in the deepest shades of black and blue is on a level which I had never seen before. A different option would have been to add a small implant, but I chose not to go this route.

Finally after three rounds of fat grafting, filling in the small dent and increasing the overall size of the breast mound, I had my nipple appointment. In many ways, it seems superficial to go back, take time, and endure pain for what may seem to be simply cosmetic reasons. However, I knew it was more than that. Years ago, I was fitted with a partial prosthesis. This prosthesis had a tiny bump on it mimicking a nipple. When looking in the mirror at Thelma’s, I could hardly believe I saw two nipples peeking through my bra. My eyes and brain immediately appreciated the symmetry that had been lost for so long. Even I would have told you that it didn’t matter, but that would be a lie. Although only as a fleeting thought, I have felt a pang of self consciousness in a locker room or at a doctor visit, always knowing the missing nipple would stand out, but only figuratively. In my nightshirt and in an unpadded swim top, I was consciously and subconsciously aware of the difference.

The surgical addition of a nipple was a straightforward procedure. Lidocaine was used, but the sensation on the breast mound is still mostly absent. As the four injections went in, I could not even feel the first two and wondered if they would be necessary at all. The second set did elicit a brief twinge of acknowledgement. After some surgical magic, the nipple was created, photographed (by my request), and bandaged. This was one of my easiest procedures. Fortunately, I don’t feel overly anxious about procedures and can tolerate having them without systemic drugs. After this appointment, I was able to drive myself home. In the days that followed, my main complaint was fatigue. Pain was not registered at all, though occasionally I was aware of a minor aching.

The next step is always to wait. Waiting is such a large part of the cancer experience. At this point I needed to wait to heal. After about three months I was eligible for an areola and nipple tattoo. I looked forward to this final step and was very hopeful along with my brain, that the appearance of two nipples would be noted and then fade away into the sense of normalcy I have long sought.

Seven years

Seven years ago I underwent surgery to remove a small lump in my breast.  The lump and resulting pathology changed the next year of my life and brought breast cancer into my health history.

It is interesting being a survivor.  I have many breast cancer sisters and enjoy providing information and support to newly diagnosed women.

In my other world, I am a mom to three children who keep growing up. My daughter who was a toddler at diagnosis, is now heading towards breast development and puberty. My post cancer baby is almost four.  My oldest hardly remembers when mom had breast cancer, but knows it's part of his history too.

Having year after year of clean scans and no evidence of disease is great and relieving. Not everyone has been as lucky.

Scares

It's interesting how cancer really changes your perspective on things.  Every new bump or pain or odd change in your body makes you think of cancer.  If you thought nothing bad was ever going to happen to you, but then it did, it's like a rude awakening.

Since my cancer experience, I've had a few "scares."  Times when something wasn't just right and my mind jumped right to cancer.  Even if I had reason to believe that it was probably not cancer, somewhere in my mind I entertained the idea of cancer.

In these instances I've even had biopsies and that made it even more real, like a repeat performance:   waiting for results, considering the what ifs...  It is not a happy place.  But as the optimist I am, I would brush off the what if's and try to go on with my life.  After cancer, I just know too much.  I have had friends die.  It's hard to forget what I know and to not be concerned.

In one instance, I even needed surgery and general anesthesia again.  I really had thought I could make it more than five years, maybe even most of a lifetime without surgery again.  A hoarseness had become apparent with my voice.  After many months of wondering if the hoarseness was here to stay and required a doctor visit, I finally consulted my doctor and also a specialist.  In the video of my throat, I was shown a small bump in my false vocal chords.  The doctor did not know what it was, but recommended it come out and soon.  She did not want me having this bump grow and obstruct my breathing.

After consulting another specialist and confirming that the unknown bump needed to come out, I reluctantly scheduled surgery...and left my nursing toddler again.

The bump still baffled the doctor even after it was out.  It wasn't until the pathology came back that it showed it was a xanthogranuloma. While these are benign growths that can occur in the body, the throat is a very odd place for them.          

In the end, I did not have cervical cancer, or throat cancer, or even skin cancer.  When I finally received the phone calls, the biopsies were always not cancer.  I could leave the waiting place and go back to living life, just a bit more of my innocence lost.

5 Years!

I'm thrilled to make it to five years since being diagnosed with breast cancer.  I have three amazing children and a still wonderful husband.  Hitting two years and planning a pregnancy was pretty special, but five years tops it.  In addition I will celebrate my 40th birthday later this year and I am excited about making it to that milestone as well.  

Life is good all around.  Around here we still know how to have fun and exercise.  I even teach hoop fitness classes once a week.  Staying connected with women who have been diagnosed with breast cancer has been nice for me too.  I stay connected on-line and meet newly diagnosed women locally as well.  Volunteering my time supporting and providing information to breastfeeding mothers still is good too.  I wasn't sure at one point if it would be too hard for me, but I'm glad I stuck with it and am thrilled to be a breastfeeding mother again.

Bras and the Quest for Symmetry

I often wonder if bra shopping will ever be the same.

After my first surgery, I noticed my breast was a bit smaller than the other.  It wasn't very noticeable in clothes and I didn't worry about it.

Then I had my second surgery and now I had one natural breast with a nipple and one breast mound.  I found that a padded bra felt more comfortable for me.  It hid any imperfections of my surgery and my one nipple.

The next bra scenario happened when I was pregnant.  All of the pregnancy hormones were headed to my one breast and it grew and grew.  The other did not.  I finally sought out a local mastectomy boutique to see what my options were.  They fitted me with a padded mastectomy bra and sold me a mini prosthesis.  It was actually more of an enhancement designed to give someone with breasts a little boost.

Finally I am even bigger, full of milk on one side, and nursing.  My bra options seem to dwindle even further.  I would like a nursing bra, but I also like the pocket on the mastectomy bras for my "enhancement."  I see what the mastectomy boutique has to offer.  We find a couple stretchy bras that will work for nursing and have a pocket.  In addition, I find some of my old nursing bras and sew in a pocket on the one side.  These options seem to work well.

As the years pass, I wonder if I can just shop in a regular store.  I know what seems to work and what doesn't.  I find a great fit and figure I can cut near the lining seam a touch to allow me to slip in my prosthesis.

As my mini enhancement prosthesis starts to degrade and lose it's firmness, I head back to the mastectomy shop.  Initially I was very much turned off by the full prosthesis.  I went through reconstruction and have a bit of a cleavage, I don't want to hide all that with a prosthesis and a full bra. But I was curious about other options.  I was happy to find a small prosthesis that is not a full one, and it has a small nipple.  I was so tickled to try it on with my bra and shirt and notice through my shirt that I have two nipples again.  My brain sees two and feels symmetrical again.  What amazes me most is that they look identical.

At some point I may consider more surgery to even things up.  I will have to wait until I am done nursing and my natural breast gets back to it's final size.  I still am not thrilled with the idea of a artificial implant inside my body.  And even less thrilled that I may need to replace it in my lifetime.  Right now, I keep the prosthesis in my bra for a couple days at a time and just put the bra on and off.  I do wear a different enhancement in my swim suit which is a mastectomy suit.  But I am comfortable around my family with nothing and in my nightshirt.

Coming Full Circle and Nursing Again

Breast cancer influenced my nursing timeline three years ago.  Having the opportunity to nurse a new baby has lessened the sadness surrounding that weaning.  Nursing was always such a large part of mothering for me.  Breastfeeding is more than food;  it is warmth, comfort, reassurance, love, and more.

As a new baby, she didn't realize that she can’t nurse on both sides.  She would try to latch onto anything and often would try to nurse though my shirt on whichever side I held her.  I am conscious that I only nurse her on one side and try to hold her and have her sleep on my other side occasionally.

I am fairly protective of my remaining breast.  Because I only have one, I had concerns about not being able to switch sides during a big growth spurt or even with sore nipples.  For the most part breastfeeding on one breast has been an easy task.  It is interesting to never need to switch sides and never wonder which breast I used last.

Chiropractic care has helped us both stay more even with the one-sidedness.  Having a sore nipple is unique in that I can't know if it's occurring on both sides or not as there's only one.  This is especially true for soreness due to hormonal changes.  With two nipples, there is confirmation that the soreness is "normal" and on both sides.  Probably the biggest challenge was developing mastitis at six months. It was rough and nursing through it was the best option.  It certainly would have been nice to have two breasts then!

Through my volunteering as a lactation counselor and my personal experience of nursing two other children, I know that breastfeeding is all about supply and demand.  I have seen twins nurse successfully.  I know nursing on one breast is possible, but seeing it is amazing.  I marvel that my body works so well and my baby thrives on just my milk.

As my baby turns into a toddler, I love that nursing is still a part of our lives.  I see how important it is to her.  She knows there's only one breast and nipple and it's just fine with her.

Becoming Pregnant

When I was diagnosed with breast cancer just over two years ago, I wondered if I would ever be pregnant again.  As treatment options became reality, it seemed less and less likely.  Now I am pregnant again and it seems so normal, yet so long ago that I felt like this.  It was a lifetime ago, but only 5 and a half years ago. 

Having a cancer grow inside your body feels so foreign and is something so unwelcome.  Becoming pregnant is taking back some of that control, though trying to get pregnant is another lesson in lack of control.

Feeling my remaining breast swell and do what it is supposed to do is so normal.  Growing a healthy, normal baby again is so fulfilling.  

I feel tremendously lucky that I have no evidence of disease and am able to be pregnant.  If I had had a hormone receptive cancer, I would likely still be taking Tamoxifen and not pregnant.

Even though I feel like a breastfeeding expert, I do have some concerns about nursing on only one side.  There isn't much information available for women who find themselves breastfeeding after a mastectomy.  What if my nipple becomes damaged?  What if she seems to need more?  Even though I know that through the perfect system of supply and demand, she will have just enough.

Being older and post cancer treatment certainly has made this pregnancy a bit harder than my others.  I started at a higher weight and did have some concerns about being 37 years old.

Already having a six year old and a ten year old brings many people to pause.  Why the big space in my family?  Do I really want to “start all over again?”  Watching a baby grow and develop is an awesome experience, seeing it through my older childrens’ eyes is even more so.  I know what to expect in some instances, but for them it’s like magic.

Ultimately choosing to have another baby and being able to was the best decision for me.  It has been healing to see my body function more normally.

Finishing Herceptin and Cancer Treatment

The new normal:  what life following a cancer diagnosis is often considered.

My life which used to be filled with toddler music class, story time at the library, shuttling to karate classes, visits with friends, the zoo, and the children's museum had been replaced almost entirely with doctor visits, IVs, fatigue, and a general sense of being distracted.  I read cancer magazines, books about cancer, and participate on a message forum for young women diagnosed with breast cancer.  I have scars and lots of doctors.

As my appointments began to space out and I neared my final Herceptin, I read about how patients often feel happiness mixed with some sadness.  The cancer experience is a busy one mixed with not feeling great.  Not much else goes on, even in one's mind. The patient is the center of attention at each appointment.

For me, I was ready to be done and have my days back, though it felt a little strange knowing I would have no plans to go back and get more IVs.  It had become such a normal activity for me.  I looked forward to feeling myself again and losing the gained weight.

It really wasn't until I was feeling rested and done with treatment that I realized how fatigued I had been. I hadn't stopped all our activities at once, they were slowly dropped. I had to try to remember what we had done with our days.  I was ready to sign up for activities again and find our friends we hadn't seen.

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.  

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.