Category: Surgery

Debridement and a rest day

Spell checkers hate the word debride. It seems that ‘debridement of a wound’ is the correct spelling, but debride by itself is not. I also tried debreed – that too does not show up as a word. Too bad it is a real thing!

After finding out that my plastic surgeon would have preferred the wounds to be moist (after explicitly asking and being told to let them dry out for a day – ugh), in the end she only debrided the two breast wounds. We decided that we would allow the abdominal ones to heal naturally on their own (at least for now). They will be left to dry out and at some point the scab will either fall off or be removed by the plastic surgeon.

I was so nervous about the pain going into the appointment that I took a fair bit of my pain killer meds (both my daytime and nighttime meds) – so I was pretty relaxed during the entire process. I was relaxed most of the day really – and slept for a couple of hours – awaking with achy joints (oops, should have taken the ibuprofen before napping) and hungry. Although I did not feel much during the process, I am feeling it now. It is odd how I can have no sensation on a lot of the breast area, but I definitely can feel the insult to the skin.

The good news is that since she didn’t do anything with the abdominal wounds, they will be easier to manage (I also have a lot more feeling in the abdominal area so was much more nervous about debridement of those wounds). I got the OK to go biking on the weekend as long as I promised to monitor swelling. If swelling returns, then I’m to slow down (aka less biking) and rest. I also go the OK for the Life Strong Live Well program, which starts next Wednesday (actually, the exercise portion starts on Monday February 2nd). Live Strong Live Well is a 12-week small-group exercise program that is run in conjunction with Stanford University and the local YMCAs. It is a free program for anyone who has undergone treatment for cancer, to help them gain strength after treatment (perfect for me). With it comes a membership at the YMCA, which I may use for classes outside of the Live Strong, Live Well program – although I’m not sure when I’ll be strong enough to make that worth while.

I did not get the all clear for swimming until all my wounds have healed. I’m not certain that some of them will completely heal before we do a revision surgery – this is the additional plastic surgery to clean up the scar tissue and re-balance fat tissue (that is, lipo some fat from where I don’t want it, and fill in some where I do). I am not planning on scheduling that surgery until I feel strong again. For once, I want to go into surgery feeling totally strong. The surgery itself will be about three-hours (I was surprised at the length) but is typically done on an out-patient-basis – so no hospital stay (yay).

So today is physically a rest day – getting both physically and mentally prepared to start tamoxifen on Monday.

Thu January 22, 2015
Celebrating my boob job and cancer language

Several women in the breast cancer blogosphere have commented on how inappropriate it is to say to someone with breast cancer that “at least you get a free boob job” or any variant thereof (see Reconstruction after breast cancer: It’s not a boob job). I agree. If you have never had breast cancer, you really do not understand how difficult reconstruction is – especially after your body has gone through chemotherapy and/or radiation treatments, which make reconstruction that much more difficult. It is certainly not a route that the majority of us would have chosen to go through. On top of that, reconstruction is also a difficult personal choice – to choose the physical pain of the surgery over the emotional well being and struggle with body image, a struggle that many of the women had even before their breast cancer diagnosis.

With that being said, as someone who is still recovering, but recently (Dec 17) had a double-nipple-sparing-mastectomy with immediate DIEP Flap reconstruction (a 12-hour surgery), I have the right to celebrate my new breasts (noobs). I am one of the luckier ones – I didn’t need radiation as part of my cancer treatment. I did neo-adjuvant chemotherapy, which meant that my reconstruction did not need to be delayed. I was able to get through the worst of the surgeries in two surgeries (I’ll have a third to clean things up once the current one has fully healed). Instead of years of reconstruction, I have a reasonable hope of being done with surgery before the end of 2015. The reconstruction surgery wasn’t 100% successful – in that I did loose some skin in the process. My nipples aren’t what they used to be – but they are still all mine and I won’t need to go through the process of nipple reconstruction. My noobs are perky – now that four weeks have passed I’m allowed to set them free. I can go without a bra. I tried one of my favourite shirts on, one that I always needed a bra to wear, and I’m quite happy with how it looks. It will look even better when I’m not wearing the abdominal binder. I need to wear the binder for another 4-weeks. It almost feelings like my original buddha belly – but even as the picture shows, I do have a slimmer profile (and I’m still a bit swelly overall from the surgery). I’m sure the post-cancer me will look ‘healthier’ and slimmer than the pre-cancer me – which is rather ironic really.

This brings us to another cancer language ‘trap’ as Nancy calls them – see Nine Cancer Language Traps. That of cancer being a ‘gift’. Honestly, I would rather go back to the pre-cancer me – the lumpy chubby me. The one that was strong, and growing stronger each day as I enjoyed regular 30+km bike rides. I may growth through this experience – as we grow through all of life’s experiences, but this last 8 months has been anything but a gift.

So, as I struggle through the aches and pains of recovery, I will celebrate how I look even when I’m not yet feeling great. Feel free to tell me ‘you look great’ … but don’t ever use the term ‘free boob job’ unless you too have experienced a breast cancer reconstruction, in which case, we can share that ‘insider’ experience.

Sun January 18, 2015
Ups and Downs

Healing is full of ups and downs. One day you are doing really well, and then then next, not so much.

Saturday I really over did it. I walked over 5km, then went to two support groups (so sitting for 4 hours).

To top that off, I tried to taper my overnight pain meds …

It didn’t work out so well. We had planned on being up early on Sunday in preparation for Scott going back to work Monday (we need to ensure routines are in place so that I’ve showered and had all my dressings changed before he goes to work). Of course that didn’t happen. I didn’t sleep well (less pain meds after a long day) – so we didn’t get up early, and I ended up taking it easy most of Sunday and still spent a bit more time that I would have like wishing for more pain meds.

On one of the Facebook groups that I following, someone posted this video that graphically shows a procedure pretty similar to what I have (I’m pretty sure that my plastic surgeon didn’t cut out a piece of my rib but we’ll check that today!) – http://mdvideocenter.brighamandwomens.org/specialties/cancer/deep-inferior-epigastric-perforator-diep-flap-breast-reconstruction – I caution you to only watch this video if you want to see the procedure from the surgeon’s perspective – this is NOT a patient education video. I made through about 1/2 the video the first time before I had to stop. It was just too much. It did, however, help to explain why I’m feeling belly button pain (that is pain, inside where my belly button is). It does help to appreciate just how involved this surgery is, and why it might take a while to deal with the pain of healing.

I don’t tollerate pain well, but also, I tolerate the pain meds too well – such that I need stronger pain meds in order for them to be effective. It isn’t a great combination – but I’ve decided that I’m not going to keep playing this game. I’m not going to keep trying to taper the pain meds too soon while still pushing myself to get exercise – the combination doesn’t work … we shall try to keep the exercise to a 5km (3mile) walk each day and taper the meds slowly. I feel strong and pretty good when I have enough pain meds in me .. otherwise, I feel tired and sore all over but in particular my skin between my breasts is highly sensitive such that anything touching or rubbing it hurts …

Today we see the plastic surgeon for follow up. I’m looking forward to hearing what she has to say. When in the hospital it was comforting to see my surgeon daily or every other day … it is much harder to go for a week without seeing a surgeon to ensure the wounds are healing. Looking at the photos, it looks like my incisions are healing nicely – if you want to see a photo, here is the link for today’s incision documentation – http://dttocs.smugmug.com/photos/i-c4zM5nH/0/M/i-c4zM5nH-M.jpg – warning, it is graphic.

Healing on the outside doesn’t really tell you how well I’m healing on the inside. My incisions may not hurt (actually other than the outer parts of the abdominal incision, I don’t actually have feeling yet for the incisions that need the most healing – but I do feel a general pain on the inside – like my insides have been turned upside down and backwards and are still settling into their new locations … so the pain is mostly on the inside which makes it difficult to describe.

But with each day, I’m getting stronger – feeling more energy (except Sunday) … so as long as I don’t over do, then I shall be fine. Crossing my finders I get these drains out soon and ride the trike on the weekend (since I need Scott to lift it in and out of the door and maneuver it through the elevator. Too bad it doesn’t have a reverse gear!

Mon January 5, 2015
Recliners

Upon leaving the hospital, we were worried about how we would manage at home. It seemed that everyone I talked to, and everywhere we looked on the internet people professed at the need for an electric recliner – for both lounging but also for sleeping.

We were so convinced that we tried to rent one, but unfortunately there were none available. We were forced to make do with what we had. For sleeping I was pretty sure I’d be OK. The physical therapist at the hospital taught me how to get into and out of bed on my own. At home, we had two different sized wedge pillows (12 inch and 7.5 inch). After my first surgery I slept using the 12 inch wedge pillow with additional pillows to prop up my arms (the sentinel node biopsy meant that I had painful incisions in my armpits, which needed to be elevated). I found after a few weeks I wanted to be lower but we didn’t yet have the 7.5 inch wedge, so I worked my way down the 12 inch one.

For this surgery (bilateral mastectomy with DIEP reconstruction – but NO underarm surgery), I found that I liked to sleep with the 12 inch pillow. During the day, I like to use both pillows stacked, so that I can easily watch TV on my iPad or read. Since I didn’t need to elevate my arms, it has meant that my husband can sleep in the same bed (I’m not taking up the entire bed). I feel much more comfortable, as it means that if I get stuck in the night he is there to help. So, as far as sleeping goes, I’m doing just fine without the recliner.

I was also worried about what we would do during the day. I didn’t want to be spending all my time in bed, as that wouldn’t be healthy. Our couch is a little too low, such that it is difficult to get into and out of (and frankly isn’t that comfortable). The other two chairs we have are desk chairs with wheels, which wouldn’t work out so well (our apartment is pretty small, so we don’t have a lot of excess – except perhaps if you could bikes!).

For daytime when I want to be seated, we ended up moving one of our outdoor rocking patio chairs (see pictures), inside. Fortunately, this chair turned out to be just the right height, so that it is easy for me to get into and out of. It rocks, but the spring is pretty hard, so it doesn’t rock too easily, so I don’t find myself being flung back, but also, it means that I can use the rocking motion to help me get out of the chair. This was really handy early on.

So, overall, I can say that yes you can survive this surgery without the need for a recliner. I also attribute not have a recliner to how soon I was able to get out walking. If I were too comfortable in a recliner, I might be inclined to spend more of the day lounging in it. Of course, may not actually have been the case, as I’m pretty good at self-motivation to get exercise.

Sat January 3, 2015
A small cup of coffee

I am reminded that recovery is slow. Although I was happy to announce the end of active treatment, I still need to recover from that treatment.

I was lucky in that I only had two surgeries. Many women go through this process with a lot more surgeries a lot further spread out – such that they are in treatment for 2-3 years. The nipple sparing mastectomy saved me at least one surgery (or tattoo) – one to recreate nipples. Doing the reconstruction at the same time as the double mastectomy also saved me surgeries – as the combined surgery is not an option for many women.

I will likely have one more surgery, but there will be no rush for it. There will be no worries of cancer growing or spreading, so the surgery can be scheduled after I’ve gained my strength – at a time when I feel strong going into it.

With each day I make a few more steps towards recovery. Today was a 3.2 km walk – just shy of 5000 steps (for my first walk – we will do a second walk over to Safeway later today).

I’ve also started to reduce my pain meds. I’d like to reduce them further, so that I can enjoy a glass of wine with dinner, but alas, healing takes time. Pain needs to remain managed otherwise the healing process will go slower.

On the good news, I got clearance from my plastic surgery nurse to have a small cup of coffee! I enjoyed a very nice cup of Kauai peabody coffee that we bought when we were in Hawaii in November. I stopped all caffeine (coffee and chocolate) a week and a half before surgery. Since the surgery involved microscopically connecting blood vessels, I needed to stop eating/drinking anything that made those vessels smaller. Now that I’m two weeks out from surgery and healing nicely, I’ve received clearance for a little coffee. This actually goes a long way to reducing the pain meds, as caffeine makes some of the pain meds more effective. So, my one small cup of coffee (and perhaps a little regular chocolate) will go a long way to helping me heal.

I am thankful for all the walking and biking I did before surgery. When I took my first steps, my legs were strong. It made a huge difference to how quickly I was able to move, and how quickly I’m now able to walk (not that I walk quickly, I’m at about 2.5km/hr). I should really say how soon I’ve been able to walk.

Today I am thankful for my one cup for coffee 🙂

Fri January 2, 2015
Surgery – Initial impressions and day 2 drama

The first time I looked down at my new breasts (day after surgery, during the first dressing change), my first thought was that they were a little smaller than I expected. Now, I had told me surgeons that I’d be happy with about a 20% reduction in size, but somehow, I didn’t really internalize what that would be. Also, since my first surgery (and truthfully, since the cancer began to grow), my breasts have not been ‘normal’. Over the last 6-months they have been continually changing. So, I no longer really know what ‘normal’ would be. What I can say, is it was sure nice to look down and see breasts … as the days progress post-surgery, my breasts seem to be a different size each day … swelling a little now and then, and then receding … like the river out back. It may be a month or two before they stabilize an a “size” …

My new breasts (noobs), look a lot like my old breasts. This is because the replaced parts are all under the skin. So, the skin is my original breast skin (for the most part, I think there are a few patches that aren’t). It is still very difficult to tell how the nipples will turn out – they were initially saved during the surgery, but it isn’t completely clear how the blood flow will re-establish and what things will look like when the wounds heal.

What came a bit of a surprise was that when I look down between my breasts, I now see a flat belly. I’m really impressed with how well that turned out!

I was a bit surprised at the first few days of recovery. I didn’t expect to be quite so out of it, and quite so debilitated the first couple of days. The first day was pretty much a blur. What I remember most about the second day, was that anytime I was giving roxi (pain meds), I struggled to stay awake. The day was mostly spent sleeping. For the first 48 hours the nurses were doing doppler checks (validating blood flow to the flaps) hourly. In addition, during morning rounds I had multiple teams of doctors come in all wanting to take a look and test the dopplers themselves – first it was the plastics team, then the pain team, then the breast surgery team – and then there were my actual surgeons – my breast surgeon who seem to come at exactly the right time – and my plastic surgeon.

Throughout day 2, I requested to see the pain management team – they had come during rounds the first morning. Unfortunately, they never came again. This became a bit of a problem … on day 2 I was also to be out of bed for the first time. We spent much of the morning waiting on the particular NP that was responsible for the first transition from bed to chair, then back to bed. I was ready to give it a try at 9:30, but it wasn’t until noon that she finally appeared. It was rather frustrating to be ready, but having to wait. We transitioned into the chair, and then a little later I walked over to another chair, and it was suggested that I sit for at least an hour. After about an hour an half I was ready to get back into bed, so a team of nurses came to help with that transition. For me, this was a great success – however, I was completely shocked when a couple of hours later I learned that the order was given to remove my catheter and change my pain med regime. You see, I had transition to and from a chair, and walked about 10 paces – I was in no shape to get to and from the washroom. No one had asked me if I was ready to make that transition. I was frustrated more by the lack of consultation, than the inappropriateness of the order. I resisted as much as I could (fortunately, I resisted long enough) – After Scott returned (he had stepped out to pick up his parents from the airport) – in my incoherent state I told him of the orders. I was very upset. I the nurse came in and explained things again to Scott – the orders had been given to remove the catheter and pain button. I was still freaking out because there was no plan in place to deal with how I would get to/from the washroom. There seem to be a complete lack of logic to this decision – I tried reason with the nurse – I tried to explain my concern. My day nurse was clearly pretty junior as she really just wanted to execute the orders as given. We ended up negotiating a solution that would allow her to remove the catheter (although it wasn’t my idea solution). She didn’t really know how to deal with a patient who was non-compliant. We figured we’d wait for shift change (which was fast approaching) to get the full scoop again of what was ordered – but then in walked my breast surgeon. I broke down in tears – she could tell I was clearly upset. When I explained about the order to remove the catheter and pain meds, she said that was dumb. She noted that it was shift change on a Friday evening, and that was not the right time to be making a major change – plus she agreed that I wasn’t ready to walk to/from the washroom then taking out the catheter didn’t make sense (at this point I’d only been out of bed once). So, she got the orders reverses (which caused some level of drama as she was not known on the floor I was on – I was on the plastics floor – some of the nurses thought she was my oncologist – although I explained many times that she was my breast surgeon. In the end I got my way, but I also spent the night worried about the drama and whether it would re-play again in the morning – fortunately it did not.

Thu December 25, 2014
Getting organized at home …

Over the next few days, I’ll try and get caught up on reporting about my hospital experience. It was a mixed experience, certainly not all positive but I had some pretty terrific nurses and nurse assistants, and a pretty terrific husband caregiver too – which made it go much better than it otherwise would have.

When we got home one of the biggest challenges was figuring out all the medications and a process that allows us to create an efficient process. I can now better appreciate why it felt like the nurses were giving me various pills on an almost hourly basis. Someone asked how many? I’m at 17 different meds, with 11 different dose times – the goal in setting up a schedule was to optimize pain medications and reduce the number of times in the day I’m taking drugs, while still respecting various drug interactions. This isn’t something that is easily done by the pharmacy, as the pharmacy doesn’t deal with all the over-the-counter meds that are also prescribed (e.g. I’m prescribed certain vitamins which aren’t provided by the pharmacy). I think this pictures shows well how Scott was feeling when he first started to tackle the problem.

After several hours and a phone call to the last floor I was staying at in the hospital, he was able to prioritize drug interactions (it was impossible to meet some of the requirements), and create a spreadsheet of when to take which meds. It actually would have been a lot more useful if the hospital had printed out my medication schedule for the last 48-hours I was in the hospital. That would have given Scott something to work with. I cannot imagine how the average person could even manage this!

Initially we had not included my asthma inhalers. In the hospital, a separate respiratory tech would visit me (I think twice a day), to give me one of my asthma inhalers – actually the one they gave me was different than what I normally take – the hospital often would make substitutes to align with their systems and availability. Since it wasn’t what I normally took, I didn’t think about it when I got home. Then after dinner, I suddenly had an asthma attack. I had Scott and my in-laws rushing around the house trying to find inhalers and pillows and whatever to try to reduce the pain induces with the sudden onset of coughing and wheezing. It was NOT fun. I then realized why they were proactively giving me an inhaler while in hospital. So, now we have added proactive inhalers to my list of meds…

So far, so good …

Tue December 23, 2014
Denial can be a very powerful ally at times like these!

I shall be undergoing major surgery in less than 48-hours. Just before support group on Saturday, it occurred to me that the whole idea of surgery has become normalized for me. Within the breast cancer community, we often talk about surgery as if it were a ‘normal’ occurrence. After being immersed into the community for the last six months, I too have come to think of surgery as ‘normal’.

I remember the early days – being terrified of the whole idea of surgery. For my first surgery, I did not give myself time to be terrified. I booked a trip to Hawaii the week before, and returned with less than 48-hours to contemplate. In that short period of time, I had pre-surgery labs to do, as well as a Forluli photo shoot. I didn’t allow myself time to get scared or panicked about the surgery.

For this surgery, I’ve had a little more time to prepare. I’ve spent most of that time ignoring the fact that I’m having major surgery on Wednesday morning. Denial can be a very powerful ally at times like these!

For a brief while today, I started to worry about my lack of preparation – or perhaps to second guess various decisions we’ve made. After much re-reflection, I went out to the medical supply store to look at the electric recliners that they rent. I’m glad I did. I tried the cheaper one with a single motor – the back lowering mechanism was far from smooth – I’m pretty certain the jerking motion would have been pretty painful post-surgery. I tried the nicer two motor kind. It would do. I’m glad I went to try them out – now if we decide that I need it, we know exactly what to ask for. Fortunately, they both deliver and pick up, which makes rental an attractive option.

For additional preparations, I’ve created a sign-up sheet for help with food and visits/walks – especially for when Scott goes back to work. It is pretty much impossible to chop veggies and such when you are limited to lifting 5 pounds – so unless we plan to eat cereal/oatmeal for all our meals, we’ll need a little help. Unfortunately most of my support network isn’t in Santa Clara (or the area), so they cannot easily pop by and help. I’ve had many friends offer to Skype/Hangout/Facetime, and that is so awesome. I’ll post this again in the new year – when people aren’t busy trying to figure out how they will get through the holidays.

The only other preparation that I need to do is to order Christmas dinner. I’m thankful that my in-laws will be here to help execute on Christmas dinner – without them, we wouldn’t be having Christmas. We’ll order a nice dinner from Whole Foods – so all is needed is re-heating. My mother-in-law (with some help from my father-in-law) is going to bake up some family Christmas classics, so I’m sure that will help bring a little Christmas into our lives this year.

After tomorrow I’m not sure when I’ll be back online. The surgery is expected to take 10-12 hours. I will then spend 4 days in the hospital – so will likely be home on Monday, but might be home Sunday if I’m feeling really ambitious. Although I gave myself permission to go into surgery kicking and screaming, I’m not currently feeling the need for it. I’m not scared anymore. Somehow, this surgery seems like the most normal thing in the world.

Mon December 15, 2014
Pathology – What it means …

I’ve gotten pretty good at interpreting what the pathology reports say, but I’m not great at what it means.

Just before my oncologist walked into the room I said to Scott – “what I’m afraid of is that he will recommend more chemotherapy”.

My oncologist walked into the room and said that he would be presenting my case at the case conference the next day. The case conference is where all the cancer specialists get together and collectively try to figure out the best course of action. The question was, do I need more chemotherapy after surgery, and if so, what chemotherapy?

I actually didn’t think to get confirmation as to why my oncologist thought I might need more chemo – but I’m guessing it is because of the R1 results. This is the first time my oncologist mentioned the bilateral nature of my cancer and how bilateral cancer is rare – which is in part why they don’t have clear path for treatment. In addition, they have only been doing neo-adjuvant chemo for 15-years – so again, longer term outcomes are not completely clear. I’m pretty sure that if we were only dealing with L1, the idea of more chemo would not have been suggested.

The key reason this question mattered now is that it determined whether or not my port would be removed on my upcoming surgery on December 17th. If more chemo is needed, then the port stays, otherwise it can be removed (making the breast and plastic surgeons jobs easier).

Fortunately, on Friday afternoon I got word “Case conference discussed your case. No more chemo indicated, we will take out your port at the time of surgery. You will be recommended to take 5 years of Tamoxifen after surgery. No more chemo!” I broken down in tears after reading this.

So yay on the no more chemo. I’m cautiously optimistic that the recommendation will remain the same after my next surgery when the full breast pathology is available, but I’m still nervous about the R1 result – the chemo didn’t really work on that tumor, does it mean that I’m destined for recurrence? Or will the surgery be enough to kick this cancer?

Looking back at the data about complete pathological response in neo-adjuvant chemo, the left breast response is good – it was pretty close to a complete pathological response and may very well have been one had I completed the three additional doses of taxol. So that looks good. That fact that I did not have a clear indication of response in the right breasts is a predictor of absolutely nothing (since the tumor wasn’t as big nor growing as fast – complete pathological response isn’t an indicator of prognosis) … that is, it in no way predicts whether or not my cancer will metastasize. It is pretty much a roll of the dice … only time will tell.

Sun December 7, 2014
A surgeon who understands …

We realized that we had not stopped by the tree before my surgery last week. Today, we stopped briefly at the tree. I found myself looking up and reflecting (the picture also shows how my hair is growing back!) …

Unlike many of the other eucalyptus trees in the area, this one hasn’t lost much of its bark. It is still a fascinating tree to look up at …

I also had to capture how well I’m moving, five days post surgery – so here I am with my arms up high …

Mostly today’s visit was just a checkup before flying to Canada on Wednesday. I wanted to make sure everything was healing as expected (it is). My surgeon took a bunch of pictures of her handy work for both my file and for research. All is well.

The pathology isn’t in yet, but some very preliminary results were shared. The preliminary results of the nodes is still showing as negative. In addition, the preliminary results of the tissue under the nipples is also negative. This is good news – if there is any cancer in the tissue under the nipples, then the nipples will be removed when I have the mastectomy on December 17th. If the tissue under the nipples remains negative, then the goal will be to keep the nipples as part of the surgery December 17 (bilateral mastectomy with immediate DIEP flap reconstruction). We will get a full pathology report on December 4th.

When we discussed my bladder issues, my surgeon made an interesting comment. She commented that maybe it is because she is an older doctor, but she finds that sometimes she needs to remind residents to consider the patient perspective before making recommendations. This was a classic example, before suggesting a catheter and pee bag for a week, think about the patient impact. My surgeon agreed with the watch and wait approach given my upcoming trip, and if it is still a problem when we get back, she can refer me to urology for a consult. She would rather give me a referral to a specialist then put me through unnecessary discomfort (never mind impact on ability to exercise) of a week with a catheter and pee bag. It really confirmed that I had chosen the right surgeon – one that looks at me as a person, and my entire well-being, not just my symptoms.

Mon November 24, 2014