Waking Up is Hard to Do

Waking Up is Hard to Do

Everything went black as they wheeled me through the operating room double doors. The next thing I remember was faint sounds and confusion. A male nurse was introducing himself and telling me that it was time to move out of recovery and into my room. I gathered that he was in a rush, and everything seemed a bit disjointed. I faded in and out of sleep and don’t remember much.

What I do remember from the first night was extreme thirst. I’ve never been so thirsty in my life. I was not allowed to drink anything in case they needed to rush me back into surgery. Those first hours are critical for the blood vessels to connect to the flap (as boob #2 is now called.) I was too out of it to help myself, and am so grateful for Andy, who stayed awake by my side all night. He was able to use a little sponge on a stick to put water on my lips and inside my mouth. I think I begged for water all night. At some points, my mouth was so dry that my lips stuck to my teeth. The nurse finally slathered vaseline on my lips and that helped quite a bit.

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I also remember feeling my right arm puffing up like a balloon. Lymphedema does not like the trauma of surgery. I remember the nurses coming in every hour to check my vitals. I’d wake up enough to ask for water and push my pain med button. They used a doppler radar to listen to the blood flow to the flap. It sounded like a baby’s heartbeat. I couldn’t tell you much else about the night. I don’t know if I ever actually opened my eyes. I do remember once, when the nurse asked me if I needed anything else, I said, “a giant glass of water, please.” I did not get a giant glass of water. By morning, I was so parched I couldn’t talk. All I wanted was water, sleep and serenity.

Then, all of a sudden, there was a grating, raucous conversation that seemed all about sunshine and happiness but with a nasty undertone. It was the nurse’s shift change, and the raucous one would be my caregiver for the next twelve, long hours of my life. She was syrupy-sweet on the surface with an underlying toxic passive aggressive core. Let’s call her Nurse Saccharine. She managed to hold on to her tight smile as she insulted and criticized everyone around her, loudly. She crashed into the room, jolting me out of sleep every hour to check my vitals. She would be in charge of getting me to stand for the first time, which is never pleasant, even under the best of circumstances. She kept popping in telling me excuses and delays. In the meantime, the physical therapist came in to get me up for a walk, but I still had a catheter and was connected to drain suction on the wall. I told her the nurse was coming after lunch to get me up, so she arranged to come back around 1:00. Well, Nurse Saccharine did not like this at all. She thought it was ridiculous that the PT didn’t just do it herself and get me up.

I further inconvenienced her when I asked for additional pain pills before trying to get out of bed. This turned out to be a mistake, as she gave me something that made me very sick. Up until that point, I had a “magic button” that delivered dilaudid to me as frequently as every 10 minutes. It worked great on the pain, and didn’t cause nausea! A tough combination in my opinion. So now, nauseous and weak, it was time to let Nurse Saccharine pull my catheter and get me on my feet. Yippy!

The hospital bed did much of the work, but the final twist pulled hard on the fresh incision which spans from hip to hip. After the searing pain subsided, I put my feet on the floor and stood up. Next, three or four steps to the chair. I made it! I settled in and was finally able to sip on water. She told me that she would be back to get me walking to the bathroom in a couple hours. At this point, the water was too much for my stomach and just when the PT came to work with me, I started throwing up. I think this was Saccharine’s way of punishing the PT for not doing more earlier. We did not go for a walk. Instead, the PT wrapped my arm and I continued to sit in the chair feeling awful.

I asked for more anti-nausea meds, but the nurse said the doctor wouldn’t approve another one. I couldn’t keep the water down, and going on 30 hours without water, the nurse wanted me to pee. Not surprisingly, I could not. Saccharine threatened to put a catheter back in if I didn’t pee, so I started drinking my water a little more ambitiously. No way was I going to let this woman put a catheter in while I was alert.

I finally ordered some broth and jello to try to calm my stomach down. It was Saturday afternoon and time for the NFL play-off games. Andy came back from catching up on his sleep to watch the games with me. I slept through most of both games, though. The shift change came again and thankfully I got a much nicer nurse. She told us that the previous nurse informed her that I refused the additional anti-nausea meds. Imagine that. We told her that, despite begging for additional anti-nausea meds, Nurse Saccharine told us the doctor said no- an outright lie. Why would anyone make someone suffer like that? Once I got the nausea under control, I felt so much better. I had a pretty good night. I needed to rest up because the next day was the Packer game, and I didn’t want to sleep through that!

As 7am approached, and time for the shift change, I started feeling worse and worse, imagining another 12 hours with Saccharine. My whole day turned around when, at 7:15, a very nice nurse quietly came in my room and introduced herself as my nurse for the day!! No more Nurse Saccharine!! I later learned that Andy told them at the nurses’ station that we had trust issues with the nurse and did not want to have a repeat of the previous day! That made my day. Sunday was a turning point. I felt good. I could get up on my own, eat, manage the pain and nausea, and the Packer game was awesome!!!

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Foob Decision

Foob indecision, I should say. My thoughts on the topic of breast reconstruction change daily. Some days, I feel like I’m done with all things related to breast cancer. Other days, though, I feel the need to finish this journey, and face reconstruction. It’s a difficult decision. I do not feel “incomplete” in any way. I feel strong and healthy, and I’m at a very happy point in my life. As I’ve said all along, I’m not a vain individual, so my physical appearance isn’t dictating what I do next. How I feel will dictate my next move. Deep down, I would like to complete the process.

Two years ago, I had a double mastectomy. One year ago, I had one implant removed due to infection. I am now living, lopsided, with one implant and one flat chest wall. Though I feel whole, the journey feels somehow incomplete. Every day, I have pain and tightness in my chest and ribs from scar tissue and radiation damage. The swelling in my arm from lymphedema is also a struggle. Inevitably, each time I see my doctors, they gesture at my partial reconstruction and the question comes up, “what are you going to do about that?”

To reconstruct or not to reconstruct, that is the question.

Honestly, I do not know the answer to that question. Like everything else along the way, I face several options, each with their own pros and cons. One, do nothing and live with one “foob” and one “not-foob”, swapping the prosthetic between bras and swimsuits as needed, or skipping it and going awkwardly foob-less. Two, remove the remaining implant and go flat and fabulous. Three, face additional reconstructive surgeries.

Avoiding surgery sounds nice, but would mean accepting a lifetime with a prosthesis, which, frankly, is a bit of a pain in the ass, and quite uncomfortable. It is awkward dealing with the prosthesis in the locker room or when I sleep at someone else’s house. I occasionally feel that my desire to avoid surgery is a cop-out based on fear of facing something difficult. Removing the current implant would be a relief. I do not like it. It feels uncomfortable, gets cold, and does not look very boob-like. Getting rid of it and going flat crosses my mind often, though then I may be stuck fumbling around with two prostheses, because I am not comfortable enough to go out in public without “something” there. Doing the surgeries to complete the reconstructive process does hold some appeal for me.

At this point in my life, I had wanted to be done with surgery. Between 2012-2015, I have had six surgeries . My kids were only 7 and 9 when they witnessed my first surgery. They have been there to help me recover from all six surgeries. I do not want their childhood memories dominated by pain, weakness, and their mom’s inability to keep up with them. We have already faced a lifetime of “I can’t do that.” How can I teach my children that they can do anything if I am constantly unable? I am also trying to teach my children to face fears and do difficult things to achieve the things that they want out of life. Can I encourage that if I’m avoiding this next step in my journey?

Do I want to have a normal appearance? Of course. But realistically, I lost that two years ago when I had the mastectomies. “Normal” will never be fully regained. Reconstruction can go a long way to give me a decent appearance while fully clothed, but that is not the same as getting my body back. My body will never be the same again. I am growing stronger, but I still have limitations from multiple surgeries, radiation and the effects of lymphedema. My priority is the ability to do activities with my children. If the surgery I am facing can relieve the lymphedema and restore strength I lost, then it may be worth facing that adversity.

Again, like art, I am a work in progress.

Funky Lymphedema

Funky Lymphedema

Lymphedema is… I don’t even know what to call it…so, funky lymphedema it is. In a nutshell, it is a painful accumulation of fluid in an extremity, and it is incurable. You may recall hearing about it in the news recently, when Kathy Bates became an advocate for people suffering with lymphedema. When I first heard about lymphedema early on in this journey, it was one of the things I actually feared most. The symptoms of lymphedema include painful swelling, skin changes, heaviness, and fatigue in the affected limb. My fear was that this condition would prevent me from doing the things that I love most. Despite my fears, I started experiencing the symptoms of lymphedema back in January, as a result of the skin infection (cellulitis) I developed in the area of my surgical scar.

There are a number of reasons why women battling breast cancer develop lymphedema. I have a combination of all of the causes, so, to say that I was at high risk for developing lymphedema is an understatement. It can result from mastectomy surgery, especially if lymph nodes are removed. Radiation targeted at the remaining nodes does further damage to the lymphatic system. Finally, infection to the area with the compromised lymphatic system can be very difficult to clear from the affected extremity. Naturally, having ticked all of these conditions off my list, I was primed to develop lymphedema.

The purpose of the lymph nodes is to filter proteins and fluids from the lymphatic system. When the damaged (or absent) lymph nodes can’t keep up with this function, the result is fluid buildup in the extremity, in my case, my right arm. My arm was slowly puffing up like a water balloon. My kids found it entertaining to press on my arm and watch the indentation of their fingerprints linger for several minutes. An oddity, yes, but I was not amused. Mainly because simply lifting my arm left me feeling like I had done a hundred reps with heavy weights. And the pain of axillary web syndrome also returned to my arm.

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The only way to reduce the swelling has involved ongoing physical therapy over the past two months to try to reduce the swelling and return my arm to its normal size and strength, as well as daily wrapping to prevent additional fluid from accumulating. I was doing pretty well. With the help of the lymphapress (think of a sleeve with about 8 air chambers that fill with air in sequence to squeeze the excess fluid into my veins where it can be carried out of my arm), my arm was returning to normal, and feeling better.

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With months of physical therapy, my arm was almost back to normal, when a miniscule scratch turned into full blown cellulitis. I caught it early and was put right back on the antibiotics. After a 10 day course of antibiotics, it cleared up, but as soon as I went off the antibiotics, I developed another area of cellulitis on my forearm, completely out of the blue. So, back on antibiotics. Once again, after my latest surgery, I am facing more pain and swelling in my arm.

Sadly, there is no cure for lymphedema. I will forever have to protect my arm. I have to avoid scratches, bites, blisters, sunburn, etc. to my arms. I will forever have to wear a compression garment, wrap my arm when swelling begins, and carry antibiotics. I will forever have to face questions such as, “what did you do to your arm?” I’m still working out how to answer those questions. I didn’t DO anything to my arm. On second thought, maybe I did. It’s the small sacrifice I made to rid cancer from my body.

What I have learned in the last few months trying to control the lymphedema, is that I don’t have to fear it. I will not allow it to prevent me from doing to things that I love. It’s just one more reminder that I need to remain diligent and make my health a primary focus. I need to work a little harder now to grow strong, and implement healthier choices into my life. I feel assured that the more active and stronger I become, the easier it will be to control the lymphedema.

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.

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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…

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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.

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.