Surgery

On Wednesday it happened. I had my double mastectomy. The doctors removed one sentinel lymph node on th right side, the side with the cancer. That node was negative on the initial pathology in the OR. On December 1 I will get the final report, I am confident that that report will also be negative.  My hospital stay was an amazingly short 27 hours.  I was given a spinal block which is an amazing thing.  The doctors said it generally lasts about 24 hours, I think mine is actually wearing off now at 40+ hours later.   The pain levels have been low and easily managed. Being flat chested is very strange and will take some getting use to. I have only seem myself completely unbandaged once. It is difficult to look at but the scars mean I kicked cancer's ass.

No more chemo.

I haven't updated in a while and for that I apologize. A quick recap of the last few weeks.

Before cycle 5 I celebrated my baldness with friends by having a henna party. My friends were able to have their hands or feet henna-ed and I had my bald head done. Asma did an amazing job.  

I had a wonderful time.

In the middle of cycle 5 our new granddaughter decided to make an early appearance. 

Emma Jane, born October 5, weight 4 lbs 8 oz. I think she came early to have more to snuggle with Grammy before my surgery.

Cycle 6, the last one!

 On our way out of the infusion center we rang the bell, TOGETHER, because that is how we did this. I could not have done it without Patrick.

Half way through cycle 6 I had a visit from Ian and Moira. I was wonderful to see them.  Of course if Moira was here a trip to the American Girl Doll store was necessary. 

 

Unfortunately at the end of their visit I spiked a fever and had to go to the emergency room. I had a "touch" of pneumonia and my electrolytes were seriously low. 8 hours in the ER and I was able to go home.  

At the 3 week point after chemo I was feeling better. We visited Dr K and found that my platelet levels were high enough to go out on the bike again!  I still have herceptin treatments every 3 weeks but they are easy. There are 10 of those left. Easy peasy! 

Last week, I truely started to have more energy. I had a list of things I wanted to do in my last week before my double mastectomy. All of that was put on hold. Monday afternoon I went to check on my mother in law only to find that she had fallen. She hit her head and broke her hip. Patrick and I have spent this week sitting at the hospital with Mom. She has been in traction that whole time and unable to move, she needs help with everything. Her surgery for a partial hip replacement has been scheduled several times but keeps having to be postponed. Now we are looking at Monday for surgery. Tuesday is my 10 hour pre-op day at MDA and Wednesday is my surgery day, a double mastectomy without reconstruction. Life is crazy right now but we are managing one day ( some times one hour) at a time.

Cycle 4 day 9

My daughter has reminded me that I have not updated my blog. If I am being honest with myself and you it is because I have been a little blue.  Each round has been a little more difficult. I have nausea, diarrhea, mouth sores, head aches, fatigue, body aches, numbness in my legs, muscle spasms in my eyes, incredible heartburn and nothing tastes good, nothing!  My first two weeks of each cycle are spent just managing side effects. The medicines make me sleepy and unable to focus on anything.  I miss my life, I miss my creative outlets, I miss food, I miss my hair.  I know I have only two chemo cycles left but after fifteen years of medical issues and four rounds of chemo I am tired. Two more rounds of chemo are not the end. I have to have a double mastectomy and six months of herceptin therapy. I know I can do it I really do but it's hard . 

Cycle 3 day 8

My imagining results are amazing. My molecular breast imagining report says,   "The known carcinoma has markedly improved, with only residual non-mass 1.8 x 1.0 cm moderate uptake at 10 - 11 o'clock position, 6 cm from the nipple (prior 2.4 x 2.2 x 2 cm). No uptake is seen on the corresponding CC projection in order to obtain the 3rd measurement. No other suspicious lesions seen in the remaining breast. "

The chemo is worth it. The tumor is shrinking!

Cycle 3 day 1

It has been another 12+ hour day at MD Anderson. Labs, Dcotor, visit, ultrasound, mammogram, molecular breast imagining, more labs and chemo. They could not detect my tumor on the mammogram! On ultrasound it measure a little less than 1 cm. It is now less than half its original size. It's after 7 PM and chemo is almost finished. I received a new premedication to help with the nausea and vomiting and another new med to help with the diarrhea that plagues me in the second week. Hopefully these help week one and two be a little better. I also got a prescription for my head prosthesis a.k.a wig. I am not sure a wig is for me but insurance covers it so I took the prescription and I will think on it. Thank you all for your well wishes. They are working. We are kicking cancer's ass!

Cycle 2 day 20, no hair

Well I did it, I had my head shaved. I just couldn't take the slow progression into baldness. The hair tickling my shoulders, arms and back felt like a bug crawling on my. I lost so much hair in the shower on Friday morning that my hair was looking thin and scraggly. 

It was time. 

Two more days until cycle 3. 

Cycle 2, day 15, hair

You know from the beginning that your going to loose your hair. You cut it short and donate what you can. You buy scarves and evaluate your hat collection. You think your prepared. Your not! I run my hand through my hair and my hand comes away covered in hair. I am not sure what to do. Do I hold on to my hair as long as possible? Do I shave it? I didn't cry when they told me I had cancer but seeing my hair in my hands brings tears. 

Cycle 2 day 10 , travel

(I must wear a mask on the plane) 

This weekend we traveled to Maryland for my niece's wedding. Travel and chemo are not fun. I have a newly found appreciation for the patients I see at MDA who have to travel there for their treatments. Being away from home when you don't feel well is difficult and not just in a creature comforts kind of way. Chemo therapy is about navigating side effects. The Chemicals that they have to use to kill the cancer reek havoc on your body, nausea, vomiting, dry heaving, diahhrea, and body aches all add to the normal challenges. When you travel you eat out. When your on chemo eating out is a no go, you never know how a food, even your comfort food will cause you to react. There are so many people to visit and your fatigue is real.  This trip has been more of the hotel room and less of the running around we usually do. It has been skipped meals so my tummy is stable and afternoon naps. It has

been worth it to see my niece marry the man she loves and my adorable grand children all dressed up to be in the wedding party. Kudos to all of the cancer patients out there that must travel for your care. You earn an extra special award in my book.  

(A brief stroll in downtown Annapolis )

( my beautiful grand children) 

Cycle 2 day 5

Friday July 24 I had my second cycle of chemotherapy. It was a long day because I also had my port placed. 

Before my port placement.  

The port placement was actually a bit more uncomfortable than I thought it would be but it is done now and I have access for my treatments for the next ten months. We received really really great news on Friday. On Manual exam my doctor believes that my tumor has shrunk by 50% in diameter. That's amazing!   I can't wait to have an ultra sound in a few weeks to see how much smaller it really is.  

I was able to tolerate the Taxotere this round and I have to tell you it has wiped me out. I have slept and slept and slept.  Chemo is not easy but we are kicking cancer's ass 

Checking in, cycle one day 19

The last two days I have been feeling good. Food is not always my friend but that is easy to work around.  Thursday we go to MDA for a pre op appointment and port education.  Friday morning I will have my port placed. It will be on the left side of my upper chest. The port gives access for chemo without having to have an IV placed each time. Since we have about a year of treatment, six rounds of TCHP, surgery and then six rounds of trastuzumab alone, I think it is a good thing. Keep your fingers crossed that I am able to have the taxotere this next round without a reaction.  If I can not it will change our treatment plan. I am a little nervous about it. How much worse will I feel with the extra medication? 

One cycle down, five to go.

Cycle 1 day 8

I did it! I made it through the first week of chemo!  Nausea, fatigue, body pain and diarrhea (I know, TMI) all made an appearance but I made it through. Little triumphs and small goals! My next goal is to make it past the 2 week mark, when my counts are at their lowest, without getting sick. 

Cycle 1

Friday we spent almost all day at MDA.  We arrived at 11:00am and left around 12:30 am. I had my initial images done for a study in Mulecular Breast Imaging, an Echocardiogram, an appointment with Dr K. and my first round of Chemo. Patrick was with me every step of the way. 

(By the way the bag on the right is the one mentioned in my first post.)

Dr K. had the results of my additional testing. I am HER2 positive. This makes targeting my cancer a bit easier. It also gives me more surgical options, but we are going to worry about that later.  Being HER2+ means that I get 6 rounds of chemo and herceptin drugs every 21 days. We went over all of the side effects, there are many. All of the daily precautions, also many. Then off to the infusion center we went. 

The HER2 medicines and chemo premeds.  

I receive the medications for HER2 first. They make you feel a bit tired. These take about two hours to run.

 At this point it had gotten so late they had to transfer us from the infusion center to the main hospital because they were closing, while we moved I received steroids and anti nausea medications.  Once we got settled into our new room and met the new nurse it was time for the chemotherapy drugs. Taxotere was first.  Apparently 25% of the patients receiving this drug will have a side effect. The nurses all mentioned this several times. They keep an emergency kit in their pockets just in case. Well you guessed it, I am one of the 25%. Within minutes of the drug starting my chest became super heavy, my throat scratchy and thickening like when your getting strep throat.  The nurse stopped the medication and gave me 50mg of Benadryl and something else. My Bp was 154/101.  Fifteen minutes later my chest felt better, my Bp was down but my throat was still dry and tickling and I was definitely feeling the effects of the Benadryl. The nurse had talked to the Dr. and we would try it again now that I had had the Benadryl. Some patients just need the antihistamines to be able to receive the medicine. Now please remember that it is after 10pm on July 3, a holiday. The nurse starts the medicine again. Bp was ok, my chest was a bit heavy but not like it was before ( could have been the Benadryl) but I was still having to clear my throat. The nurse decided I was reacting again and stopped the Taxotere. She was very afraid that  my throat would close and because it was a holiday they didn't have the same staff as normal to handle that well. She administered another 25 mg of Benadryl, we waited 30 minutes and moved on to the next and final chemo drug.   By 12:30 am we were head home. After all the Benadryl I don't remember much of that ride. I crawled into bed and slept until 9:30. Missing the Taxotere does have one positive, it was the drug that would cause hair loss in my cocktail so I hopefully get a one month more with my new short hair cut  

Saturday found me tired and with a massive headache, no Tylenol or Motrin allowed though. We had a quiet day, at dinner at kids house and then watched the neighborhood fireworks. 

I did not sleep well Saturday night I woke often feeling queasy and with a headache. By 5am I gave in and took the pain medication prescribed and zofran. Zofran is my new best friend. Hopefully the nausea doesn't last too long.  We ran back to the hospital on Sunday for my nuelasta booster. This increases bone marrow to hopefully keep my cell counts up. It can also cause bone pain (let's hope not). 

Today, Monday, is quilt bee day. It only happens once a month but I am going to have to miss it. I am in awe of the people who do this and get up and go to work. I am very lucky to be able to stay home while I don't feel well.

Preparing

Since our meeting with my team last Friday I have been preparing myself for the challenge ahead. First on my list after finding out it would be gone in 2-4 weeks after my first chemo was my hair. I wanted to donate as much of it as I could. Saturday morning our first stop was a hair cut.  I am not going to lie, there were tears. I hadn't had a serious hair cut in almost eight years.

Before

After 

My fourteen inch braid is tucked away in a zip lock bag waiting to be mailed to Locks of Love. 

Saturday afternoon I spent time eating junk food and drinking sangria with friends while floating in the pool.  Alcohol and pools are not really on the chemo approved list so I relished every moment. 

Monday evening Patrick and I drove to Bacliff, Texas to Dockside Tattoo and got matching tattoos from Brittany Moates. I spent a great deal of time thinking and researching after my diagnosis. I knew almost immediately after hearing those words that my next tattoo would be something to see me through this, something I could look at and feel powerful. I started with words, strength, courage, brave, then saw a few of those words with arrows under them on Pinterest. That lead to research as to the meaning of arrows.   I found this on a website about the meaning of Native American drawings with arrows and their use in tattoos. 

"One of the biggest factors in altering the meaning, is the way the arrow is depicted or placed in the tattoo design. For example:

A solitary arrow represents defense and protection from harm. It can also be used as a symbol of movement or direction.

Two arrows pointing away from each other commonly stand for war.

A broken arrow image is one that depicts peace or the burying of the hatchet.

Two arrows crossed is a symbol of friendship

A bundle of five arrows typically designates strength, as a single arrow can be easily broken, but a bundle of arrows is tougher to break.

An arrow through a diamond symbol can represent courage as one moves forward.

For anyone searching to depict a positive outlook on life, an arrow tattoo can be a great place to start. An arrow being pulled back on the bow can depict life dragging someone down, whereas the arrow being released propels them straight ahead into something new and positive. With that being said, an arrow can only shoot forward by being pulled back, so only by going through dark times can you push yourself to better ones."

After reading this I knew arrows were what I was looking for. A grouping of arrows for strength. An arrow going through a diamond for courage.  Patrick loved the idea and when he suggested getting the same tattoo I suggested the opposite arm so that when we held hands we would have twice the strength and courage. That sealed the deal. I absolutely love our new tattoos. 

The next morning found us up at 4:00am ready for a day of testing, bone scans, labs, CTs, and a baseline appointment for a lymphodema study my surgeon is conducting. 

We are almost ready, just an echocardiogram and an appointment with our medical oncologist before cycle 1 of chemo on Friday. 

The beginnings of a plan.

Today Patrick and I spent 4 hours in a 10x10 exam room meeting our team of doctors, first all at once, then each individually. We learned that I have Stage 2a, Grade 3 Invasive Ductal Carcinoma and that my lymph nodes are benign. Those of you who know me well can probably guess that I figured most of this out with my lab reports and Google.  The information that I did not have however is very important in my treatment. I am estrogen and progesterone receptor negative.   This means that my cancer does not feed on these hormones so hormone therapy will not work for me. The third receptor that they check is called HER2. This test was inconclusive so a more in depth study had to be done. We do not have those results yet. If it is positive then they can use a medication in addition to chemo therapy to block those receptors. If it is negative then it is a bit more difficult but not impossible to treat my cancer.  Either way I must have chemotherapy before anything surgical can be done. The test should be completed in the next few days so we have gone ahead and scheduled my first day of chemo for next Friday.  Of course I asked the big question, "Will I loose my hair?". The answer is yes. Seven years ago was my last Locks of Love donation, since then I have been letting my hair grow. My goal was for it to be waist length before I donated again. Unfortunately I am not going to achieve that goal. The doctor says that hair loss occurs approximately three weeks after starting chemo, the Internet says two to four weeks. With this in mind I am going to have to make my donation a bit sooner.  It's only hair and it will grow back.  

National Breast Cancer Foundation has helped me to understand a lot about the things I have touched on briefly.

Waiting

I have been a patient for many years now and the one consistent thing is this.... You are called a patient because what you need the most is patience. There is always a lot of waiting, waiting for appointments, waiting for tests to be scheduled, waiting for results, waiting for answers.... You get the picture.


We are getting closer, only two more days until we meet the team.

I have cancer.

I have cancer. That is a terribly difficult sentence to say, but it is true. Breast cancer. Invasive Ductal Carcinoma. Three months ago I had some discomfort that I associated with my new handbag, not long after I noticed some changes then, I found the lump. My mammogram turned into an ultrasound, which became a biopsy and a week later a phone call telling me what I had already figured out. Friday, I will meet my team at MD Anderson, each individually and then all together. We will schedule more tests and formulate a plan. This blog will be my way of documenting my fight with breast cancer and keeping our friends and family who are far away updated.