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.

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.