The Waiting Game

The Waiting Game

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Over the weekend, I did what I could to rest and give my body the chance to fight the infection. My right arm, which felt like it’d been through a meat pulverizer, became increasingly swollen and very sore, further limiting my range of motion. I developed a strange ridge just above my elbow that was extremely tender and I wondered if it was a blood clot (but Andy told me it wasn’t). I also feared lymphedema, which is a buildup of lymph fluid that causes swelling of the arm. I kept up with the heat and ibuprofen to ease the cording pain, and waited until Monday, when I would follow up with the nurse and the physical therapist.

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The first thing I wanted an answer to was what the strange and painful lump in my arm was. The nurse told me that it was not a blood clot, but she was at a loss for what it was. We went on to talk about what the plastic surgeon was recommending, and she measured the red area to see if the antibiotics were resolving the infection. It was smaller, but still pretty red. She said that the radiation fibrosis was making my skin so tight over the implant that I wasn’t getting enough blood flow to the area to promote healing. In healthy skin, they could simply remove the damaged area, and sew it back up to heal, but this wasn’t an option for me because my damaged skin wouldn’t be able to handle being pulled back together and, with limited blood flow, would struggle to heal. She said, because of my age, she felt it would be worth it to do the more involved reconstruction, rather than to remove the implant and have to deal with a prosthesis long term.

Next, it was back up to physical therapy, where my therapist introduced me to another patient who had also sustained nerve damage in her arm during surgery, and was also dealing with celulitis. We started chatting and comparing notes, when I looked up and saw Leslie, my PT, talking to Dr. Tjoe, my surgical oncologist. I haven’t seen Dr. Tjoe since last spring. Happy to see her, I waved, and then I realized she was there to check on me, as she motioned for me to join them.  She said she had been following my notes from the plastic surgeon and her nurse, and wanted to take a look for herself.

So, we went off to a room, along with Leslie and a resident, and they all started examining me and discussing my situation. I again told them about the swelling and cording, and the strange ridge on my arm. Leslie was the one who identified it as another manifestation of axillary web syndrome (cording), which made sense because the pain was the same as I’d had in the past, it just looked different.  Dr. Tjoe explained that the pain and swelling was a result of the infection.

I was so fortunate to have Dr. Tjoe there to look me over. She is a remarkable doctor and really takes the time to explain things and answer all of my questions. I told her that I was hoping to avoid additional surgery (mainly because I am ready to rebuild my strength and move on), but that I wasn’t so stubborn as to refuse surgery if all the doctors were telling me that surgery would be my best option for the long term.

She explained to me that my plastic surgeon is very proactive, and would prefer to do the surgery under controlled circumstances rather than wait until it became an emergency situation, where a raging infection could force him to remove the implant entirely, and not reconstruct. She also explained that, by taking healthy tissue and muscle from my back (LAT flap) or abdomen (TRAM flap), I would not have to struggle to fight the constant tightening and limitations that the radiation fibrosis is causing, and will continue to cause for years to come. She mentioned another colleague who does a newer variation on the surgery which does not involve cutting the abdominal muscles (DIEP Flap), which sounds better in my opinion. Then, she asked if she could take a picture of the area so she could consult with the second plastic surgeon.

Leslie started working on my cording, an extremely painful process, which involves pulling and stretching and massaging my arm to “release” the cords. It is torture, but it usually provides some relief. While working on me, Leslie got a phone call with further instructions from Dr. Tjoe. It reminded me of the game Telephone, where one person whispers something to the next person, and then each person whispers what they heard until the last person says it out loud, usually with a mixed up translation. I can’t say for sure that this message didn’t get mixed up along the way, but from what I got out of it, the second plastic surgeon told Dr. Tjoe who told her nurse, who told Leslie to tell me that he concurred with the opinion that my skin may not be capable of healing on its own. They suggested that I start researching my options more so that I will be ready to make a decision if need be. They recommended that I take a second course of the antibiotic to keep the infection at bay, and I was told to schedule another follow up with the nurse, and to continue to work with Leslie.

My daily trips to the hospital continue this week, as we wait and see.

Bump, Set, Spike, Crash!

So much for my goal of fewer doctor’s appointments in 2015. This week alone, I had six appointments. Next week, I have four. The good news is, the nerve damage in my left arm is healing, and the pain in my knee appears to be subsiding, too. I spent the weekend celebrating my birthday to the extreme, culminating in a great feast and bowling with the family. I mostly watched the bowling, though, due to increasing pain in my right arm. Little did I know, that pain would throw my whole week off.

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The rest of the week, I felt like a volleyball, being bumped, passed and spiked from doctor to doctor, on an emotional rollercoaster. It all started on Tuesday. As I returned to work with my physical therapist, I had a new concern for her. I was having worsening pain in my right arm that felt like axillary web syndrome (cording). I struggled with major cording for the first 6 months after my mastectomy, but hadn’t had a recurrence in months. She took one look at my skin and noticed a hot, red area on my right breast and said it looked like cellulitis, a bacterial skin infection. She didn’t want to work on my cording until a nurse took a look at me, so she called down to my surgical oncologist’s office and accompanied me right then and there to see the nurse. The nurse started asking me if I’d been in a hospital setting or could have been exposed to MRSA. A strange question – as we sat / in / a hospital setting.

The nurse was quite concerned and prescribed a strong course of antibiotics to try and fight the infection. She wanted me to see my medical oncologist right away the next day. After that unexpected detour, I was bounced back up for physical therapy to try to relieve some of the pain I was experiencing. While there, I learned more about how quickly these infections can turn serious, often landing women in the hospital, resulting in emergency surgery to remove the infected implant. I was thankful, and feeling hopeful since we caught it early.

Wednesday, I was sent back to the Vince Lombardi Cancer Center to have blood work done and meet with my medical oncologist. At that visit, I learned that the study drug I was taking was continuing to make my blood cell counts drop, opening me up to infection. She told me to hold off on the drug for a few weeks, to let my counts come back up so my body could fight the infection. She then told me she wanted the plastic surgeon to look me over. So, I called to schedule that visit for the next day.

I always seem to end up in tears in the plastic surgeon’s office. Thursday would be no different. He explained that the dermal fibrosis (damage to my skin) was only going to get worse and would leave me open to infections, which can become serious very quickly. I asked him what we could do about it, and he said, “you’re not going to like my answer to that question”. So I told him not to tell me, but, of course, he did. He said I would need another surgery. He explained two options: Either remove the implant and use an external prosthesis, or undergo a much more involved surgery to take skin, muscle and tissue from my back or abdomen to replace the damaged skin on my chest, requiring two nights in the hospital and another long recovery.

Luckily, Andy was with me at this appointment to ask further questions, because my head was spinning. The LAST thing I wanted was another surgery. We came up with a third option which involves giving the antibiotic a chance to clear up the infection, and letting my blood cell counts improve so that my immunity would be less compromised. The doctor was okay with this option, as long as I really watched closely and got to the hospital at the first sign of infection. Andy, always helpful, volunteered to keep a watchful eye on me…

That was that. Watch and see. Walking to the car, my fear of another surgery hit me, and I collapsed into Andy’s arms. He’s always been there to hold me up when I’ve had weak moments. He hugged me tight, not letting go, and reassured me that we would make it through this, too. I let him drive me home.

It’s a good thing he was driving, because I was lost in thought and teary-eyed, looking down at my phone when Andy yelled, “Oh Sh*t” and hit the brakes. That jolted me out of my preoccupation and I glanced up to see two cars racing up the on-ramp, parallel with us. One of the cars lost control and went airborne. It appeared that he was flying through the air right into our path, but thankfully, the wall between the highway and the on-ramp halted his flight, as he crashed explosively into it right next to us. I am thankful that wall kept us out of the crash. The crash did, however, snap me out of worrying about my health, temporarily.

I had a long night second guessing everything. Did I choose the right reconstruction surgery for me? Should I have waited longer to heal from radiation? Did the study drug compromise my immunity so much that I would have to have another surgery? What can I do now to avoid surgery? Slowly, the answers to these question will work themselves out.

Now it is Friday, and I have come full circle, back to my physical therapist. She reassured me that my skin was actually in pretty good shape and the infection seemed to be under control. She thought that I would get past this bump in the road without requiring surgery. I hope she is right, because I have a lot of things I want to do this year, and none of them include room for more slow, painful recovery.

Neurology, Rheumatology, Oncology and Plastic Surgery

I have said this over and over, yet, as much as I strive to have all things cancer behind me (along with 2014), I am learning that the end is NOT the end. I still have broken pieces to put back together and it will take some work to return to my new normal. I made a good effort to complete everything before the new year, and (let’s be honest) new deductible.

On December 23rd, I had the follow-up with the orthopedic surgeon to hear the results of the MRI on my knee. That frustrating appointment left me with no reason for the sharp pain in my left knee that I’ve been dealing with for 4 months, and, frankly, the surgeon treated me like I was nuts. The MRI, x-rays and exams all show that my knee is structurally in good condition. I guess that is good news- I won’t be facing knee surgery. But the bad news is, the pain is debilitating, and there appears to be no cause, thus, no solution. The next step is to see a rheumatologist to try to discover a cause.

On December 30th, I managed to squeeze in 3 more appointments, scattered all over town. Luckily, my boyfriend accompanied me, so the full day with doctors wasn’t as dull as it might have been. First, I met with a neurologist to find out what caused my arm to go numb and weak after surgery. The surgeon and anesthesiologist had told me that most of these types of nerve problems are caused by poor positioning during surgery, which stresses, or overextends the nerve. They said most instances will resolve after 2 weeks. It has now been 3 weeks and, though there is some improvement, my arm is still numb and very weak. The neurologist scheduled me for an EMG test, which is done to find the cause of nerve problems, along with physical therapy to work on strengthening the muscles.

Next was the plastic surgeon. I was healing fairly well after another difficult surgery. The hardest part was the unanticipated nerve damage to my left arm, the psychological impact that was having on me, along with my general disappointment with the end results of the surgery. My skin was in a really delicate state due to radiation. Also, my pectoralis muscles on the radiated side were showing signs of radiation fibrosis, which is the abnormal production of the protein, fibrin, which accumulates in and damages the radiated tissue. The damage to the muscle is making the muscle very tight, limiting my movements and also deforming the shape of my breast. The surgeon again reassured me that I still needed time to heal, and that things would look better as inflammation goes down.

The final appointment was back to the Vince Lombardi Cancer Clinic to have lab work completed in order to get back in the clinical trial and on the study drug again. I was nervous about having blood drawn in my arm now that I no longer had a port, because I still wasn’t convinced that the IV didn’t contribute to the nerve damage in my arm, and I also fear the risk of lymphedema. As usual, though, my fear was worse than the reality and the blood draw went smoothly. My numbers had returned to normal, so they sent me on my way to continue with the pills, only at a lower dosage to prevent it from effecting my blood cell counts.

I think my New Year’s Resolution is going to be less doctor’s appointments in 2015.

New Year, New Chapter

New Year, New Chapter

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Goodbye 2014. You taught me a lot. I learned to get beyond my personal limitations. I learned to see the important things and set aside the unimportant or harmful. The highs were higher, and the lows were lower. I learned that I am stronger than I thought, and I learned that I am weaker than I thought, too. Everything was simply MORE. Than usual. Of course, that could just be my perspective, having had a look into the face of my own mortality.

Early in the year, when this journey still held so much of the unknown, I was not sure I would live to see another year. Dreams put off would be forever lost. Fears of leaving my young children behind were prescient. Regrets for not getting to the doctor earlier would never change the path for me, no matter how much I wanted it to change. I simply had to follow this path, one day at a time, trusting that the doctors would get me through to see another year.

What a difference a year makes. 2014 was the first year in a long time that I didn’t work myself into the ground, physically, putting off healthy habits in exchange for the need to work. Hard. Cancer was my rude wake up call. I was forced to turn my focus to reclaiming my health, whatever that took. Reclaiming healthy habits needed to be my number one priority. I made it. I am now at the conclusion of my active treatment against cancer. I can say that I am a cancer survivor, currently living with No Evidence of Disease. Now, on this first day of a new year, I am shifting my reflections towards the next chapter.

This New Year’s holds a different significance for me. I’m not one to make resolutions (that we all know won’t be kept). But I will take the opportunity to symbolically close a tough chapter, a chance to start a whole new chapter. I admit that I feel a bit lost and not sure what this new chapter will entail. I do know that I want to embrace it, and live life as fully as I can, not putting off dreams anymore to a future that may or may not come, not letting fears or hang-ups stop me. I want to find a bigger purpose for my life, a way to give back, to help other women who are facing this journey.

Andy and I have been brainstorming a lot about ways to raise funds for the programs that helped me along the way. There seem to be a lot of resources and support for women who are actively undergoing treatment, but at the end of the day, when treatment is done, lots of women are left feeling lost, depressed, suffering from PTSD and facing fears of recurrence. Most of the foundations raising funds for Breast Cancer have a strong focus on awareness, early detection, self exams and regular mammograms. That did not help me. I did not detect my cancer early. My regular mammograms did not detect my cancer at all. I never knew that there was a type of breast cancer that was not found by mammography. If I had waited until my next mammogram, I might not be here today to start this new chapter.  With this New Year, I received the gift of a second chance. I hope to make it a great one!

Happy 2015.