On Thursday, May 23, 2013, I headed to the hospital with my husband to have my Bilateral Mastectomy. As we walk down the hall toward the surgical waiting room we pass a woman crying hysterically in the hall while a doctor consoles her. Not a great image to have burned into your brain before going into surgery. Although David and I don't say a word or look at each other, we're both thinking the same thing...did this woman lose someone during surgery? Okay, let's focus on something else, anything else. I head back to the pre-op area and get myself prepped for surgery. Before surgery I head to the Neonuclear department to prepare for my Sentinel Lymph Node Biopsy. They inject a blue, radioactive substance into my breast, surrounding my nipple. This may be the strangest procedure/experience yet. Awkward! They wheel me back to my pre-op room and I spend the next hour or so being extremely bored and hungry with David. Finally, it's my turn. They inject me with the magical 'time to go to sleep' anesthesia and roll me away.
The procedure, itself, takes approximately five hours. I'm glad I'm not the one waiting. David eats, plays on his phone, worries, etc. He gets a bit of a scare when he gets paged around twenty minutes into the procedure. They tell him that they just wanted him to know that they've begun. Really? You had to scare me like that just to tell me you've started? Like I said, glad it wasn't me waiting. If the procedure was bad, the recovery was worse. I don't wake up from anesthesia well. I've learned it's because of my Sjogren's and there's just not much I can do. It takes longer for me to wake up. The first thing that I'm aware of when I awake is that I'm sick to my stomach. Nausea takes on a whole new meaning. They give me a patch before surgery to help and they give me dose after dose of Phenergan when I wake up. This need to throw up (I never actually do throw up...that'd be too easy) battles with my need to quench my thirst (another lovely Sjogren's side effect) for hours. I suck on one tiny ice cube to soothe the pain in my mouth and throat only to throw my stomach into fits of pain. Recovery takes four very long hours. Because I'm in recovery after visiting hours, David has to wait in the waiting room, only getting to see me for ten minutes every hour. It's a rough, stressful four hours for him.
Finally, they move me to a room. It's 8:30 pm by the time I'm settled, awake, and not nauseous. I talk to a few people on the phone, including my sister. I just want to see my kids, please bring me my kids. Montana, already en route, shows up first. We visit for a little while before she heads back out so I can rest and try to eat. I drink some chicken broth and lots of juice. David catches me up on the surgery and recovery. He tells me that the tumor has doubled in size. It's now 3 cm, but the doctor successfully removed the tumor with the breasts. Finally, my sister comes into the room. Wait. Where are the boys? It's after visiting hours so the security guard won't let the kids up to see me. David is with them now. What? That's sooo NOT happening. I need to see my boys and they need to see me so they can know that their mom is okay. My sister can see that I'm upset about this and finds a nurse. The nurse saves the day and lets the security guard know that it's okay for the kids to come up. We visit for a few blurry minutes...yes, I'm still heavily medicated and everything happens in flashes. The boys are quiet, but you can see that they are happy to see me. My three-year-old nephew sits beside me, lightening the mood. He gets a hold of my phone and takes pictures that I found a couple of weeks later (I think he has a future in photography). Thanks to him, I have a record of my surgery.
On May 29th, my sister brings me to my first post-op appointment. Dr. Boehm tells me that the tumor did, indeed, double to 3cm. Therefore, my new diagnosis is Stage 2A Breast Cancer. He can't actually tell me if it grew in size in this last month since my initial diagnosis or if all of the imaging tests were wrong. Yeah, right...ALL of the tests were possibly wrong? Clearly, it grew and he just doesn't want me to worry. My sentinel biopsy showed that my lymph nodes are clear...no cancer detected. My HER2 is definitely positive and I definitely need chemo. The drains have to stay in until they get under 40ml for a 24 hour period. Everything looks great, let me take some staples out, etc. See you next week. And so begins my continuous post-op appointment life. June 3rd...drains stay in, more staples removed, see you next appointment. June 10th...drains stay in, more staples removed, see you next appointment.
Actually, June 10th sees the creation of a new beast. After I get home, one of my drains loses suction. Hmmm, I don't think that's supposed to happen. I call the doctor and he has me come back in to see him. He believes he took out one too many staples because there is an open part of my incision. He stitches it shut and watches the drain to make sure it has suction. See you next week...if only it were that simple. On the late afternoon of June 11th, I find myself with no suction in the drains again. I call the nurse and she sets me up for an appointment the next day. June 12th...open incision, more stitches.
On June 17th, my drains are removed, and the rest of the staples are removed as well. Yes, yes, yes. Now I can enjoy the rest of the days of my dad and uncle's visit. There's still an open incision, but my surgeon believes it will heal with some antibiotics and time. It should be healed in time for my chemo. Let's cross our fingers because that hole looks big to me. The drains are removed early, but I can't have chemo with the drains in so my doctor believes it's better to remove them. Ding dong the drains are gone. I leave excited and ready to do a dance. I bring my dad and uncle to a boardwalk and local park in search of alligators and enjoy the rest of their visit. The more I do, the more I worry about that open incision. It doesn't look like it's healing and I decide I better sit and rest until it heals. Stupid hole holding me back.
Finally, June 21st, Chemo Day is here. This is my second attempt at beginning chemo and I'm ready to get the show on the road. The first appointment, scheduled on June 7th, was postponed because of my surgery postponement. This is fully understandable because I needed four weeks to heal from my mastectomy. I've had my echo cardiogram baseline done (right after surgery...not fun) and am ready to start the treatment. Not so fast....that open incision is causing problems again. No chemo for you. Ugh! Seriously, I knew chemo was going to get postponed because of the gaping hole in my incision. My oncologist looks pretty shocked at the size of the hole and calls my surgeon. He thinks it should be packed and my surgeon thinks it needs to be left open to heal. Hmmm, this is fun. I really hate this hole.
So, he postpones my chemo for two weeks. He wants to give the wound time to close up and heal. If it's not healed, he's going to try something he's never done before. He'll start the Herceptin part of the treatment before he begins the actual chemo part. He really doesn't want to wait to attack the her2 in my body, so he'll try something new just for me. What? Experimenting with a new treatment just for me? Of course we'll have to do something new just for me. Did I expect anything less?
On June 24th, I head to another post-op appointment. I'm so tired of these. My surgeon checks out my nice hole and a couple of other troublesome spots on my incision. As soon as he looks at the open incision, I can see the worry in his eyes. Yep, that's my large hole. It's not going away. He thought it was closed more when he looked at it last week. He believes the incision has grown and is worried. Clearly, it's not healing. He suggests surgery to close the hole and repair the other spots. He wants to do the surgery the following day. Hmmm, that soon? Another surgery for me...oh, joy! I leave the office, call my husband, sister, and everyone else and start making plans for surgery. Who's going to take me? Who's going to take Tristen to his appointment? Who's going to keep an eye on Logan and make sure he's fed? Just another day in the life of Steenie.
On June 25th, David and I head to the hospital for surgery again. Pre-op waiting again. Nausea patch behind my ear, again. Surgery, again. Post-op problems, again. Actually, this post-op experience was a new one for me. Gone is the nausea. Gone is the dry mouth and throat. Instead, I'm faced with an entirely new post-op hell. I wake up as I'm leaving the operating room. I awake to my teeth chattering and my body shaking as they push me through the hall. I'm freezing. As I'm in and out of consciousness, I'm aware of the nurses running around and talking with a sense of urgency. I'm freezing. They throw blanket after blanket on me to warm me up. I'm freezing. They put this cover over me and tape it to the mattress and wrap my head with blankets. I'm in a cocoon and I'm freezing. This is getting weird. Then, they start blowing hot air into the cocoon as I drift back to sleep. I wake up many times and try to convey to the nurse that I'm still cold. I'm freezing and there's an oxygen mask on me. What's going on with me? As I continue to drift in and out I hear phrases, like "...really cold in the operating room...", "...hypertension...", and "not breathing on her own...". When I'm awake and warm, they move me to post-op and I share this with David. He thinks I'm crazy. I ask the nurse and she says the anaesthesiologist wrote high blood pressure as one of my known problems and she doesn't know why they wrote it if I don't have high blood pressure. She thinks I'm crazy. This is all so weird. (No, I never get the answers to this mystery.) Anyway, I'm released from the hospital and sent home for recovery and spend the next days resting, healing, and just scared to move out of fear of re-opening my wound.
Side note...on June 27th, I go to my checkup with my rheumatologist. I complain about the numbness in my right thigh and how it's turned into pain since my first surgery. He orders an x-ray of my back and increases my medication dosage. On July 1st, I receive the results over the phone. Yes, I have Osteoarthritis in my lower back. Physical Therapy would be the normal course of action, but is postponed indefinitely because of the chemo. The nurse believes there is no way I can manage therapy while going through chemo, so I just need to manage the pain and symptoms with anti-inflammatories, ice, heat, and salt baths. Damn you, Cancer! Later, as I tell my oncologist about this diagnosis, he tells me this means he doesn't want to do the immunity booster shots as planned because the shot can cause bone pain and will cause problems with my arthritis. This means I definitely can't go back to work during chemo. Damn you, Osteoarthritis!
On July 1st, I head to post-op appointment #562 (at least, that's how it feels). Finally, it seems we're heading for the top of the mountain. The incision looks great and the gaping hole is gone. The dreaded drains come back out because they are below 40ml already. The skin looks healthy and healed. Everything looks great. My surgeon removes most of the stitches and the hole stays closed. He tells me that I may have to have fluid removed with a needle, but he wanted those drains out for chemo. That's okay, I'm just glad they are out. He wishes me well with chemo and tells me he thinks I'm going to have no trouble with the side effects. I tell him my oncologist thinks otherwise because of all of my other health issues, but that I'm hoping it's easy for me as well. He then tells me that he thinks I've faced a lot of adversity in my life and that this will be no problem. It does feel good to have someone with that much confidence in me. His nurse always makes me feel good, telling me that I'm the exception (and, meaning it in a positive way...haha) and that she wished everyone had my spirit. So, I leave this appointment feeling stronger than I have in awhile. I CAN get through all of this. I WILL get through all of this.
On July 5th, David and I pack my chemo bag and head to the Oncologist's office. The lab tech puts my port catheter in and draws blood. Is this really happening? Next, we see the oncologist. I explain about my emergency surgery (apparently, it's an emergency when they bump everyone and schedule you so quickly on the surgeon's non-surgery day) and show him my incisions. We talk about my arthritis and what it means for my treatment. He's relieved that I say I'm thinking I won't go back to work. He'd planned on that shot to boost my immune system for work and the arthritis throws that out. So, now it's a "definite" no work instead of a "maybe" no work. I can live with this...spend the next year focusing on my health. Not a bad thing. Decision time...do we start chemo, or at least Herceptin, or do we postpone again? "Hmmm," he says. "I'd really like to see what happens when all of the stitches are taken out. What do you think?" What do I think? I think I'm over postponing life. "I see no reason not to postpone a week. I see nothing that is urgent...blah, blah, blah...let's wait a week." Crap...another week of my life on pause. "So, let's schedule your chemo for July 12th." Crap...I'm supposed to head to my sister's that weekend and my birthday is on the 15th. So, I ask him if I'll be up for driving to Atlanta and he tells me to pack my nausea meds and be prepared for fatigue. Yes, I can still go. One thing I don't have to postpone. I'll deal with the rest.
So, now I wait. The new story of my life. Seriously, David and I have talked about it and I'm really okay with this last postponement. Instead of starting the Herceptin first and waiting three weeks to begin the other chemo, I'll be able to start all of it at once. It's worth the wait this time. My next post-op appointment is on July 10th. My surgeon will remove the rest of my stitches and will make sure the hole is gone for good. My incision looks great and I don't expect any further complications from the surgery. Soon, this battle will be a distant memory.
Whew, it's been quite a climb to the top of this mountain peak. Of course, there are more mountain tops to climb in this mountain range that is cancer, but I feel like I've made it over the highest peak. I've removed the cancer tumor from my body. That's quite a feat. I've healed from two large incisions created from the removal of my breasts...no small feat. I've met the beast head-on and sent it defeated and scared, whimpering in the shadows.
As I continue my fight, I can't help but feel on top of the world right now. The rest of the mountain range looks like ant hills in comparison to the peak I just climbed. I may face more obstacles and complications in the future battles to come, but I'm feeling great and I KNOW that I will win this war.
