I was diagnosed with breast cancer in September 2008. For Breast Cancer Awareness month, I am continuing to share parts of my online journal that kept my friends and family updated throughout my treatment.
On this day, October 21st in 2008, I underwent surgery that would save my life. I was ready, yet scared. Hopeful, yet worried. While chemo’s side effect of hair loss seemed like the worst thing I had to go through at the time, it was short-lived and but a blip in my memory. A double mastectomy however, has physical and emotional side-effects that last a lifetime.
Anyone can google a double mastectomy and read about the details that are involved in this type of surgery. There are pictures and diagrams and even other people’s stories out there. But for me, this story is the hardest one to share and relive because it’s MY story and MY body. I have always been an open book about everything I went through, but sharing this part of my treatment makes me feel very vulnerable.
Oct 9, 2008 – Today was my pre-op appointment and wow, I didn’t expect it to be so emotional. They didn’t go over treatment or side effects but just all the dos and don’ts before and after surgery. So I think the emotions were flowing just because it makes this whole ordeal even more real.
So I will be in the hospital first thing Tuesday morning, the 21st. If all goes well and there are no complications, I should be back home sometime Wednesday. That is my plan. I will have to relinquish control of “my domain” for a couple weeks while I recover, and that may be the hardest part for me!
Oct 19, 2008 – What is a Mastectomy: I debated on typing about the procedure I will be going through on Tuesday. When I first heard about it, I was shocked, to say the least. I had a general idea of what a mastectomy was, but was definitely not ready for any of the details. So I thought typing it out may make my friends uncomfortable, but it’s not like it can’t be found all over the internet! After encouragement from some friends, I’ve decided to go ahead and do it, but this will be in my own words, the way I understand it (remember I am not an expert), so if you don’t want to know any details, STOP READING NOW!
A mastectomy is complete removal of breast tissue, either one (unilateral) or both (bilateral). There are different levels of mastectomies, but I will just mention the most common. As a side note, a lumpectomy is removal of just the tumor, along with at least 1 cm of clear margins all around. Because of the size of my tumor and the fact that I do not have much tissue to give, a lumpectomy was not the right decision for me.
Prior to surgery, a dye is injected via the nipple (I know, I know, OUCH) which will show the surgeon where the cancer is. The incision is an eye-shaped cut around the areola. Because there is no way to guarantee that a cancer cell has not made its way into the nipple, that part of the breast is not reattached (this was a MAJOR emotional moment for me when I first heard it….however, they do wonders with nipple reconstruction based on pictures I’ve seen). Doctors are testing nipple-sparing surgery but the clinical trials have not been going on long enough yet. My surgeon said that she was not comfortable with this procedure yet since it is still so new and I appreciate her honesty. I’m not ready to be part of a clinical trial! (please note this was my surgeon’s guidance from 2008 and advice today is probably quite different.)
During surgery, the surgeon traces from the cancer to the first lymph node, removes it, and a pathologist does an on-the-spot test to determine if the lymph node is cancerous. If it tests negative, they are done (I think they remove a few more just to test and keep watch after surgery, but it is a small number). I’m a little unsure on what happens if it comes back positive, but at some point they test what is called the sentinel lymph nodes. These are the guardian nodes to the rest of the body. If these test positive, then they know the cancer has gotten out of the breast. So the goal is to get as little lymph nodes removed as possible, obviously. I didn’t realize how much we need our lymph nodes to regulate fluids throughout the body, etc. My breast MRI and PET Scan are not showing any abnormal lymph nodes, but we won’t know for sure until after surgery.
The reconstruction process for me will start on the same day as my bilateral mastectomy. Many women choose to wait and do it later for various reasons, but I will get the first step done right away. Since there is a loss of skin, the plastic surgeon places tissue expanders behind the chest wall. These are temporary implants that they can fill externally with saline to stretch the skin over time. They do not look or feel natural, but the goal at this point isn’t about looking cosmetically pleasing. Thanks to pregnancy and nursing my two children, the plastic surgeon said I have very stretchy skin (nice description, haha) so I have an advantage. The expansion goes on for several weeks, depending on how much stretching is necessary. Chemo usually starts during all this for a lot of women, so that tends to slow things down because the saline fills will need to be scheduled around chemo. The final steps of reconstruction will not happen until chemotherapy is complete. The tissue expanders are then replaced with permanent implants, using the same incision they used for the mastectomy.
My surgery was on October 21, 2008 at Virginia Hospital in Arlington. I stayed overnight and went home on October 22, 2008.
Oct 22, 2008 – Just a quick post to let everyone know I am home recovering. I feel okay, just a little sore. I had a fainting episode this morning and I thought they were going to keep me there an extra night, but it was just because it had been over 24 hours since I ate!
Good news….lymph nodes came back NEGATIVE for cancer, with 95% accuracy. The pathology report will confirm it, but I am confident of the good news.
I will type more later. Thank you all for the well wishes and support.
Oct 28, 2008 One week post-op: I want to update everyone on the past week before I get too far behind:
-Anxiety leading up to surgery was worse than surgery itself. The dye injection wasn’t too bad, and being put to sleep wasn’t bad either.
-Waking up alone was a bit scary, plus I didn’t have my glasses so I was groggy AND couldn’t see. I think the nurse thought I was just babbling when I was asking her questions!
-The hospital stay wasn’t too bad. Thank goodness for Morphine! God Bless my husband for sleeping on a hard window seat and taking care of me throughout the night. I don’t know what I would have done without him there.
-Yes, I fainted the next morning, but I’m convinced it was just several factors, individually not bad things, but all put together led to me passing out. That was scary, but once I ate breakfast, I felt much better. (I failed to mention that this happened when the nurse was showing Jaime how to tend to my drains. It’s possible the site of blood made me faint!)
-The pain has been bearable…more discomfort and tightness than anything. My right shoulder blade has been really bothering me, but I think it’s because I’m favoring my chest and hunching over. I’m taking Percocet at night to help me sleep but am sticking to Tylenol during the day.
-First appt was on Friday and the nurse just removed the bandages (I could finally breathe!). I couldn’t look at my chest and just cried while she cleaned me up and sent me on my way. Jaime assured me it didn’t look bad at all, and sure enough I finally got up the nerve to look myself and was relieved that I didn’t look too botched up. I feared the worst and ended up “happy” with what I saw, considering the circumstances.
-I had a pain pack that was feeding continuous pain meds directly into my chest via a thin tube for about 5 days. Jaime removed the tube himself on Sunday! In the hospital we had a nurse and a Personal Care Assistant (PCA)…but Jaime is the best PCA I’ve had.
-I have two drains, one on each side, that is draining all the extra blood from surgery. Another job of Jaime the PCA…empty the drains! The criteria to have these things removed is less than 30ccs of blood drain in a 24-hour period. Yesterday I met that criteria and will have the drains removed tomorrow. Yippeee! The drains are the worst part of this surgery and I am so happy to have them removed. Jaime the PCA will not be removing these himself, however, haha. With the drains gone, I can finally shower and wear deodorant, I cannot wait! I’ve also been sleeping in one position at night for 8 hours straight…hopefully with the drains gone I can at least sleep on my side here and there. Maybe that will alleviate the back pain.
Oct 29, 2008 – The drains are now gone, yay! I thought it was going to be painful when the nurse removed them, but it wasn’t bad at all. Tomorrow I will be able to shower. I will feel like a new woman…that is until the oncologist appointment. Sigh.
Nov 6, 2008 – Today I had a follow-up appointment with the plastic surgeon and I received my first saline fill. The doctor said everything is healing well and I got the go ahead to go back to my normal activity level. That was wonderful to hear, but at the same time, I’m nervous about overdoing it. The first saline fill was extremely uncomfortable and my chest muscles are back to being real tight, so I can’t imagine lifting anything today. I did pick Adam up because I miss holding him. It wasn’t so bad, but I’m going to give my chest muscles a day to recover from the saline injection before I do anything too crazy (like push-ups…hah, yea right. That won’t be happening for a LONG time!). The nurse used a metal detector to find the port for the saline injection. Then she stuck a needle into my skin and injected the saline. That was it. I didn’t really feel any pain because I’m still so numb. But when the saline went in, that became real uncomfortable and felt like she was placing a steel ball on my chest. I actually had her remove 10ccs because it just felt way too tight. Just for reference, I am now at 150ccs on each side, so I am about halfway there with regards to the size I want to be. Without chemo, they will do fills weekly, so the process definitely moves faster without chemo. If I end up having chemo, then they will only do fills right before chemo treatments, which will be every 3 weeks. Either way, I’m in no rush, so I don’t mind taking it slow.
Nov 13, 2008 – Today was expander fill #2….wow, what discomfort. I went for 50ccs again and am really feeling the muscle stretch. I think all muscles in your core are connected because I feel it on my sides, upper abs, mid back….as long as I don’t move it’s okay. 🙂 So now I’m at 200ccs. The nurse said we can go as slow as I want since there’s no hurry. I think next week I will only get 30ccs, then I am taking the week of Thanksgiving off.
This week I realized how frustrated I am with this whole recovery process. I’ve been grumpy and feeling sorry for myself. Even though I got the all clear to resume normal activity, some things just aren’t back to normal yet. My breasts are rock hard and numb, so holding Adam is awkward and uncomfortable. I’m still sleeping in one position all night long, which means most nights I’m in and out of sleep all night. I’ve returned to the gym and to dance class this week but I’ve limited myself to walking on the treadmill only. Certain arm movements in dance I can’t do and it’s annoying. Ab work hurts, push ups are not possible right now. I’ve never really been out of commission this long before in my life and it’s just plain frustrating.
Dec 4, 2008 – I had another expander fill on Tuesday. She only did 30ccs, and it was SO much better than the last time at 50ccs. I even drove myself home and went to my dance class last night. So I think the key is slow and steady, which I will be forced to do once chemo starts anyway. So I have to add an expander fill the day before chemo to my calendar. That is really the only day they can do it, when my white blood cell count is the highest.
December 2008 – February 2009 was my chemo treatment, along with continued expander fills, as my chemo schedule would allow. I will post about my chemo treatment next week.
Feb 3, 2009 – A quick reconstruction update…I am done with my expander fills. The plastic surgeon said my skin is stretched as thin as it will go. Now it’s just a matter of waiting for chemo to be done and scheduling my implant exchange surgery, which I’m guessing will be 4-6 weeks after chemo #4, when all effects of chemo have completely left my body and everything is back to normal. I’ll let you all know when I have a date.
Mar 12, 2009 – Surgery went well yesterday. I’m a little more sore than I expected, but today is better than yesterday. I also do not have any drains this time around, which is so much more comfortable. It also means I can take a shower tomorrow!! I remove all the dressings tomorrow, so I’m anxious to see how everything turned out. I’m restricted to no heavy lifting (more than 5 lbs) for THREE weeks. Adam is not very understanding of this! But all in all, things are good so far.
Apr 3, 2009 – I had my post-op follow-up with my plastic surgeon yesterday and she said everything is healing as it should and she lifted all restrictions to my physical activity. I am happy with the results and am working towards getting back to “normal” again.
Notes from my 12-year Survivor Self: As you can read, the mastectomy and reconstruction process is not a race but a marathon. From start to finish, it was close to a year-long process. I went on in the summer of 2009 to have nipple reconstruction which included tattoos. Fortunately, 12 years out and I have not had to go back for any additional surgeries.
The worst parts of surgery were definitely the drains and the limit of physical activity. The long-term effects are incision scars, which run across the middle of each breast, and numbness across my whole chest. The emotional effects have subsided. I have gotten use to my “new normal” and there are days I don’t even think about what I went through. But once in a while I still “mourn the loss” of a huge part of my womanhood and look in the mirror and am a little sad with what I see. But those moments are few and far between. I just keep reminding myself, I am a survivor.
Go to Breast Cancer Journey: Diagnosis and Breast Cancer Journey: Tests, Tests and More Tests for more on Angela’s breast cancer story.