One Foob Shy of a Full Rack

That’s all I have to say about that…and I had to modify my T-shirt, too.

T-Shirt Modification

T-Shirt Modification

Three breast surgeries have taken their toll on my girlish figure.  I’ve gone from breasts to tissue expanders to foobs, and now, to one foob and one…notfoob…(such are the hills and valleys of a breast cancer journey, after all).

Despite my odd aesthetic, I’m happy to report that the surgery went remarkably well, and I’m feeling great.  I finally had an anesthesiologist concoct the right mixture of meds to keep me from getting sick.  Seventh surgery’s a charm, apparently.  I arrived at 8:30, went through the usual pre-surgery routine, and in no time, I was wheeled off in the comfort of my recliner.  I tried to convince the nurse to pop a wheelie on the way to the OR, but she just laughed.  I think she thought I was kidding.

Settling into position for surgery this time, I made it clear that I did NOT want a repeat of the nerve damage the last surgery caused me.  Luckily, my anesthesiologist bent over backwards to make sure my arms were propped up to prevent over-extending the nerve.  Once she was sure I was comfortable, they duct-taped (okay, maybe it wasn’t duct tape…) my arms into position, and brought out the oxygen mask.  They instructed me to take deep breaths and imagine a beautiful beach scene.  The nurses asked me to take them all with me to the beach (this was one of those lovely sub-zero Wisconsin days), but I thought better of sharing the oxygen mask with them.  A sharp, burning pain into my IV got my attention, but they reminded me to continue with my deep breaths.  One, Two…Out Cold.

The next thing I remember is hearing Andy’s voice in the recovery room.  Recovery has been a breeze.  I woke up, gradually, without even a hint of queasiness.  I felt great, and by 1:00, I was on my way home to heal.  I had almost immediate relief from the pain, cording and swelling brought on by the infection, providing confirmation that I made the right decision to remove the implant.

By Tuesday, I was up and about, antsy to get out of the house and take a walk.  I didn’t even need the pain pills by Tuesday night.  Wednesday was the first day I was allowed to remove the dressing and take a shower.  I was anxious, and nervous, to see what this third breast surgery did to my body.  I was a bit taken aback at the concave profile of my right chest, but I’m taking it in stride.  It’s just surprising how little tissue there is left.  It feels like a small amount of skin sitting directly on hard ribs.  I still have the alloderm (donor skin tissue used with mastectomy to recreate the structure and contoured curve under the breast) in place from the original surgery, so there is a curve under what should be a breast, but now is a valley.  It will take some getting used to, but I’m healing extremely fast and feeling really good.

The last thing I still need to work on with my PT is the lymphedema that resulted from the infection, but all other limits have been lifted and I’m back on the road to strengthening.  I’m looking forward to the spring warm-up and some new shirts.  Maybe with ruffles…

Deconstructing Sue

Last night was a sleepless night with pre-surgery anxiety.  I am 100% sure that the surgery to remove the implant and damaged skin, scheduled for tomorrow, is absolutely the right decision.  Yet I spent the night, tossing and turning, deconstructing every aspect of reconstruction and deconstruction.  Part of me wishes that I had  originally chosen not to reconstruct at all, saving myself a lot of pain, surgery, and struggle over the past year.  On the other hand, I’m not convinced that I want to spend the rest of my (long) life disfigured in that way.  Seems a petty thing to worry about after all I’ve been through this past year.

Lympha Press

My arm in a Lympha Press

What I do know, is that the implant has to go.  Timing is everything, and, sadly, I may have postponed this surgery a week too long.  This week was a struggle with searing pain in my chest and back and lymphedema in my right arm.  My skin is unable to heal itself, and I’m on my third course of antibiotics to keep the infection in check.  I am counting the minutes until I can get the surgery over with, and allow myself to heal.  I wanted to be sure before doing anything so I wouldn’t second guess my decision.  My PT said, “you can second guess yourself all you want, but it won’t do any good.  You may have second guessed a decision to do the surgery earlier, too”.  She has a valid point.  All I can do is choose options and stick with them.

Again, timing is everything, and happily, I got to spend last weekend (Valentine’s Day) in Chicago with Andy at the motorcycle show and pizza meet-up with friends.  (As my good friend Mary said, “combining romance and motorcycles – brilliant!”).  Absolutely!  We had so much fun at the motorcycle show that I forgot all about the troubles I was having.  It was worth postponing everything so I could fit that rejuvenating road trip in.  I may have found my next motorcycle, too…

wee-strom

Weeeeee-Strom

Ironically, tomorrow’s surgery (February 23rd, 2015) is one day short of last year’s mastectomy (February 24th, 2014), marking my cancer-free-versary and, with it, a lot of emotion and difficult memories.  It took a year to (not quite fully) recover from the pain of the mastectomy, suffering the side effects of axillary web syndrome, radiation fibrosis, and lymphedema, along with the painful process of filling the tissue expanders to stretch my skin and muscle to make room for an implant.  Then another surgery to exchange the tissue expander for the implant, and now another surgery to undo all that, removing the implant and damaged skin to be left with a flat chest wall.  It’s way too much trouble, really, just to have the appearance of breasts.

So, even though I have a fear of facing another surgery tomorrow, another recovery, and the disappointing setback of losing another “breast” (or foob, as those of us with fake boobs refer to them) I remind myself, as I approach the one year mark, that the important thing is that the cancer is gone.  All the rest of it is just hurdles to clear on the road to recovery.

Second Opinion…and Third…and Fourth

In my mission to avoid surgery, I have gathered the opinions of many doctors, peers, and experts over the last 3 weeks.  After talking with Dr. Tjoe, my surgical oncologist, I decided that I wanted a chance to meet with the other plastic surgeon that she had consulted with about my situation.  I felt the need to get a second opinion and hear about the other muscle sparing options that were mentioned.  I also consulted with my Dermatologist to get a non-surgical perspective.

I got in for my second opinion on February 2nd.  The appointment went really well.  Surgeon #2 spent nearly an hour and a half with me discussing my options and answering my questions.  He took the time to show me pictures of procedures I might be facing so I could see the outcomes I might expect.  We ruled out the TRAM Flap (abdominal) since I just had fat grafting from my abdomen.  He explained that the tissue could be damaged and blood supply compromised.  By the end of the appointment, his recommendation was for me to undergo not one, but three additional surgeries.  First, remove the implant and damaged skin and allow at least 3 months for my skin to heal.  Then he would do a LAT Flap, using muscle, tissue and skin from my back to replace the skin that was removed in the previous surgery, and put in a tissue expander to stretch the area to the desired size.  Finally, I would have one more surgery to exchange the expander for the final implant.

Not thrilled, because, going into the appointment, I had hope that there would be a non-surgical way to heal, and coming out of the appointment, I was facing three more surgeries.  He was also willing to let me try to heal a little longer, and prescribe a cream that is used with burns and difficult to heal wounds.  He also suggested that I continue with the antibiotic for up to six weeks.  I did learn a lot at the consultation with the second surgeon, and I took that information and continued to read and learn more.

Yesterday, I returned for my follow up with surgeon #1.  We discussed the other surgeon’s strategy as compared with his.  He feels that it would be overly conservative to spread it out over 3 surgeries.  He believes that the cellulitis is confined to the skin, thus making it possible to replace the damaged skin with the LAT Flap and keep the implant in place.  I like the idea of only one more surgery, but I’m not entirely comfortable with this option either.  The last thing I want is to go through the surgery only to have the infection continue, forcing me to have another surgery to remove the new implant.  Then I’d have to start all over again, and would have sustained damage to my back in the process.  It seems to me that the infection goes beyond the skin, because I have pain in my side, chest, back and arm. My arm is very swollen.  He said I could have an ultrasound guided aspiration and a culture to test if the infection is deeper into my tissue.  Otherwise, he could make that determination during the surgery by taking the implant out and testing for signs of infection before deciding whether to continue with the reconstruction or not.

My first thought upon leaving that appointment was to let surgeon #1 attempt to do the reconstruction in one surgery, with the understanding that, if there was any sign of infection, I would want to simply remove the implant and heal before attempting reconstruction.  Leaving the surgeon’s office, I made my way over to my medical oncologist for a follow up appointment.

Being early, I decided to detour upstairs to pick my physical therapist’s brain and ask her about a compression sleeve to deal with the lymphedema in my arm.  When I showed her my arm and explained the pain I had, she assured me that the swelling was a reaction to the ongoing infection rather than lymphedema.  Her explanation was that lymphedema does not cause pain or limit range of motion.  She also told me that compression sleeves are not the most effective way to reduce the swelling, since “one size fits all” doesn’t take into account the fluctuating levels of swelling.  Instead, she gave me a wrap (like an ace bandage, but not so stretchy), and instructed me on how to use it.

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On to the oncologist, I got blood work done, which showed that my white blood cell count was still low, not helping me fight the infection.  I decided to withdraw from the study drug since that was most likely the cause.  I also asked the oncologists and her nurses their opinions on the surgical decision I was facing.   It was a long day of appointments and a lot of information to process.  I didn’t feel ready to make any decisions until I had a chance to sleep on it.

Today, I feel ready to move forward with my decision.  I have spoken with 3 surgeons, an oncologist, a physical therapist, peers in my support group, and on and on.  I know that I’ve exhausted all other options, and surgery needs to happen soon.  The incision wound is getting worse, not better, after a month of trying to save the skin and heal.  The pain and swelling in my arm is affecting my day to day existence.

My gut feeling is that I need to get the implant out as soon as possible and heal fully before attempting another reconstruction.  Then when I am sure that my skin is better and the infection is handled, I will do the LAT flap procedure straight to the new implant.  So, 2 surgeries rather than aggressively doing one surgery or conservatively doing 3.  Seems like a good compromise.  I’m ready.

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.

I Endured Surgery and All I Got was this Lousy T-shirt

I Endured Surgery and All I Got was this Lousy T-shirt

I’m not quite sure what I was expecting when I returned to the plastic surgeon’s office a week after reconstruction surgery. Completely uncomfortable, off the pain pills, I was more than ready to get the dressings, tubes and stitches out and see what my new look was going to be. Since the time of my bilateral mastectomy, it’s been a running joke that I would soon be trading in the awkward tissue expanders for new “perky Bs” that would suit my athletic lifestyle. I was excited all week to see how they turned out, so I was completely unprepared for my actual reaction to the first look at my chest.

The doctor made a point to say, “now, don’t judge based on your first look at things”. There is still the healing process to go through, and I was very bruised and swollen. But it’s easier said than done. I didn’t like what I saw. The area of damaged skin that had to be removed made the right scar painfully tight, in turn pulling and deforming the shape of the right breast. Radiation does so much damage to the area that this can be a common problem. The procedure included fat grafting, where they take fat from my stomach to fill in the areas around the implants to “soften the look”. The end result made the right side even more lumpy and misshaped, to the extent that the doctor said, “it may need more work.” After the rough week I just had, the last thing I want is more surgery.

On top of the sleeplessness, pain, and disappointment with my new look, there is the much more disconcerting problem of my left arm. It is still numb, extremely weak and I am not able to control my movements very well. I now am being sent to a neurologist to see what went wrong. In the meantime, I am not letting anyone draw blood from my arms (since I fear that the IV might have had something to do with the nerve damage), which may cause me to be kicked out of the clinical trial that I am in for a very promising drug used with stage 4 breast cancers to decrease rates of recurrence. Hopefully, I can get everything checked out before I lose my spot in the study.

Once again, I was hoping to get out of town this winter break, but now I have one kid on the couch with a fever of 102, an appointment tomorrow to find out the results of the MRI on my knee (which had to be postponed since September because of the metal in the tissue expanders), and appointments next week with the neurologist and surgeon. And today, of course, I woke up with a bad sore throat….

Oh, I almost forgot – about that shirt I mentioned in the title. I bought it months ago with the intention of wearing it home after reconstruction. Unfortunately, one week after surgery, I still was not agile enough to actually put the shirt on…At that point, I was in tears anyway and not feeling lighthearted enough for self-deprecating humor. The next few days were rough.

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Happy Holidays! I think I’ll sleep until 2015!