BC Becky

Never thought I'd want to be a breast cancer survivor

Category: Emotional Journey

  • 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.

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    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.

     

  • Crying and TV

    I sometimes need to just cry. It has been awhile since I’ve had that feeling. It used to be that my eyes would plug up (they produce goopy oils that don’t always clear on their own) – so a cry would help that out. The cry also helps with processing feelings – it just feels better after a good cry.

    Every since my cancer diagnosis, I haven’t been able to watch some TV shows. Some I enjoy, but others that I used to enjoy I can no longer watch – specifically, I cannot watch Criminal Minds anymore. I cannot deal with the suspense. I find the high suspense level increases the stress response in my body, and I just cannot handle it anymore.

    I’m also very aware of things that cause me stress. I find that I do my best to remove myself from the situation. Having to re-live and re-tell the issue at Stanford and the catheter has been one of those challenges. It was important that the feedback be provided, but also it is a source of stress that I no longer wish to retell, and relive … I just want that to be over.

    I am glad that the next season of TV shows has started up again, as I often find that TV helps me cry when I need it. After watching this weeks episode of Parenthood, I cried almost all the way through it – and I feel a lot better. I needed that good cry … it just made me feel a little less sorry for myself, and a little better in general.

    I’m looking forward to a bunch of my regular TV shows to start back up again. I’ve been watching reality TV shows (mostly cooking shows) a lot lately (I can watch whole seasons on Hulu) but they don’t make me cry and provide that same catharsis.

    And now, despite my joint pain I am going to go out for a walk. We have a new working theory on the cause of the pain … and it if is true then hopefully within the next few days things will start to get better rather than worse … let’s see how today goes … yesterday was just over 2km, with two breaks to sit down, which is a drastic decrease over last week. I’ve taken several rest days, so this is not about me over-doing it … definitely need to get to the bottom of it before I start a new medication where one of the possible side effects is joint pain (although I’m told with tamoxifen, the joint pain is relieved by exercise – where what I have now is worsened by exercise).

     

  • I look good but … and real hugs

    I look good but I feel like crap. Actually, mentally I feel good. I took a higher dose of drugs last night (and more melatonin) so I slept better than I’ve slept in a while. Unfortunately, I’m having another side effect – at least that is what we think it is – we think it is a side effect of chemotherapy – but as the days go by it gets worse 🙁 … my joints are sore. More specifically my ankles, feet, knees, and fingers. I tried doing some yoga positions on the floor, and found myself having to crawl to the bed in order to get up (fortunately, I was strategic in my attempt, so that I was not far from the bed) … I cannot get myself up off the floor … it also means a fair bit of pain in the knees when I use the toilet … I so hope these symptoms subside soon!

    On a more positive note, I can do almost normal hugs now. I was so missing getting a real hug from my husband. Two months of fragile afraid to break me hugs had me missing a real hug. So yesterday we tried real hugs – with squeezes and everything – and it worked out … that definitely made me feel much better …. although yesterday I was feeling pretty sorry for myself …

    I also got a note from my plastic surgeons office that I can officially allow my noobs to go free – that is, I no longer need to wear a bra of any type. That being said, they still have incision scars that ooze a bit, so I do find that I need something to hold the dressing in place and keep the oozing off my outer clothing – but still – it is nice that my noobs are allowed to be set free!

    For my birthday, I think we are going to go camping. I’m planning it now. We are going to rent a tent cabin up at Big Basin Redwoods State Park. The tent cabin means that I’ll be sleeping on a raised bed – so I am not on the ground and can easily get up. The tent cabins have wood stoves for heating, so I won’t get too cold. A couple of friends may also come up and join us that weekend. Big Basin is close, so if things don’t work out, it is an easy trip to get home – but to spend a couple of days in a tent cabin in the woods will be nice – just being able to breath the air, and read a book while sitting under a 2000 year old tree is restorative in and of itself. I could use that about now.

  • A nice walk … but I’m tired …

    I need to slow down a little. I was chatting with the nurse from our insurance company yesterday. She asked, ‘how much are you walking, 10, 15 minutes?’ … I’m like, 1-2 hours … it’s a bit of a different scale.

    In some ways, I’m far exceeding where I should be at this point. I’m approaching 4 weeks since surgery. I’m now walking 4-5 km per day – today was a little longer and on a trail I wish we found sooner. It was quite pretty (the Penitencia Creek Path up at Alum Rock park).

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    That being said, I need to take it a little easier. Tomorrow will be my off day – where I won’t be going out for a walk. I will try for two days off per week – to allow my ankles and my knees to recover from the walk days – but also because my body just needs a day off now and then.

    In addition to the aches and pains associated with surgery, I’m also feeling aches and pains associated with the aftermath of chemotherapy (post-chemo arthralgias). The aches can get so bad in my hands that I cannot flush the toilet (I need to use my whole hand in a fist to have the strength for the pressure to push down the handle). I also get aches in my knees and ankles. Fortunately, this is treated with ibuprofen – within 15 minutes of taking a dose the aches and pains go away only to return before the next dose. It is frustrating to say the least.

    I also still have two drains in – abdominal drains that involve two hoses coming out of my pubic region. I have an appointment on Tuesday in which at least one (hoping for both) will be removed. They are still producing more fluid than would indicate that they should be removed, but it is starting to get close … so perhaps a day of rest tomorrow will help with the reduction of output.

    In general, I’m doing well but I’m getting tired of all this recovery. I want to feel better faster. I want to get back on my bike (soon – I have to wait one week after the drains come out) … one step at a time …

     

  • 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).

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    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 🙂

  • The end of active treatment …

    Emotions flood over me in waves. Whenever I think about it, I cannot stop crying. It has been a roller coaster of a journey, and it is now officially over!

    What do I mean? As of Dec 17th, I’m cancer free. The double mastectomy removed the last bits of cancer from my breasts. The pathology showed a .7cm mass in my left breast – the ever elusive L2 that wasn’t found in the lumpectomies. Other than that, everything else was clear, including the lymph nodes within the breasts. My surgeon said she saw no reason for radiation – and to follow up in a month to see how the incisions are healing.

    My oncologist entered the room and said that he was surprised that all my nodes were clear. The prognosis is much better given that the cancer never spread beyond the breast tissue. Now that I don’t have any breast tissue left, the only places for spread are against the chest wall and on the skin and incisions.

    So today marks the end of active treatment. My tears are of relief … it is finally over.

    The next step is a pill called tamoxifen (prescription has been sent to my pharmacy), which is taken once a day for 10 years (or until my body goes into menopause – at which time it is switched over to an aromatise inhibitor). This pill suppresses my bodies ability to create estrogen – the primary thing that fed my cancer. I am to start tamoxifen once I am a little more healed from the surgery – so they know what is causing what symptoms. The surgery itself was pretty major, so my body needs a few more weeks to heal.

    So now I need to wean myself off the pain meds so that I can enjoy a good glass of wine to celebrate the new year – free of cancer – starting over.

    Recovery is still a pretty long road. My hematocrit tanked again (lower than ever), so I find myself easily out of breath while walking or climbing a single flight of stairs. My incisions are healing well. I still have a couple of drains which I’ll probably have until next Monday as they are still producing a fair amount of fluid. So for the next week, we shall take one step at a time, trying to increase my walking distance and awaiting the day when I can get back on the bike …

     

  • 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.

     

  • An excuse won’t make you feel better

    I have many excuses not to walk – this last week has been full of them – first it was my ankles swelling up, then it was a couple of days full of doctors appointments, then the pain from having my big toenails removed … lots of very good excuses … but none of them made me feel any better.

    Today I was feeling tired, reminiscent of the fatigue I suffered during AC chemo. We went to the market for the first time in a long time. It was nice to pick up some fresh organic veggies and fruit. The markets are not as bountiful in the winter as they are in the summer, but there is still lots of great produce to choose from.

    When I got home I was still feeling tired. I was tempted to lay down and sleep – but instead I went for a walk. At support group yesterday one of the ladies commented that no matter the problem, the best thing for it is enough sleep, drinking lots of water, and walking 3 miles a day.

    It feels like it has been forever since I’ve been able to walk 3-miles in a day, but in reality it has only been a few weeks. And now that my ankles are no longer swollen and my toes are no longer too painful, and some feeling is returning to my feet, I have no more excuses. So instead of napping I went out for a walk – and you know what? After about 5 minutes I started still get numb while walking and my ankles sore, but the rest of my body is feeling good … so from now until my next surgery, I shall set a target to walk 3-miles per day (about 8,000 steps). I may do it in multiple trips, sitting down on park benches when needed, but still getting out and walking, cause I know it makes me feel better.

    I am also looking forward to having this surgery over with. Once this surgery is done, I can start recovering from this assault on my body that has been cancer and treatment. I can start the new year re-building strength. Oh how I want to rebuild strength … how I want to start riding again, and feeling strong enough to re-climb Mount Hamilton.

  • 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.

     

  • Dying with dignity

    This weeks theme in the breast cancer blogosphere is brought to you by Brittany Maynard – the 29-year old with incurable brain cancer that moved to Oregon so that she could choose when and where she would die. Interestingly, at about the same time a case went to the supreme court of Canada relating to doctor assisted death for terminally ill competent adult patients who are suffering. It will be about six months before we get to hear the results of the supreme court ruling – however, The Dying With Dignity Canada website points out that 84% of Canadians are in favor of physician assisted death under very specific conditions – the question they were asked is “A doctor should be able to help someone end their life if the person is a competent adult who is terminally ill, suffering unbearably and repeatedly asks for assistance to die” (Ipsos Reid, p.4).

    When it was in the news, I commented several times, that we were talking about doctor assisted  death, not doctor assisted suicide. I think that is important. It is part of the slippery slope that people are concerned about. We are not talking about helping someone who is depressed or mentally ill to take their own life. We are talking about helping someone who is terminally ill, in pain, and who is mentally competent to choose how they die.

    In the US there is another angle of concern – that is of insurance and cost. There is a worry that if doctor assisted death was a less expensive option, that insurance companies would then not pay for life-sustaining treatments. That is a scary idea, but it is a separate problem. It should not be used as an emotional (fear factor) string that prevents people from being given a choice.

    When you are diagnosed with a critical illness, one of the most difficult things is that you lose control. You are no longer in control of what your body is doing. The treatments you need are often another loss of control. As a patient, you often fight to take control over whatever you can. Small things (like shaving your head before your hair falls out) make a big difference to your well being.

    As a self-professed control freak, I am often frustrated about the lack of control I have. Each time I’m given a choice in my treatment, that is a way in which I can assert some control over what is happening to me; however, the side effects constantly remind me that I’m not truly in control.

    So, when I first saw the story about Brittany Maynard I was encouraged. When I saw the news about Dying with Dignity and the supreme court in Canada I was encouraged. I was encouraged to know that if I end up in her shoes – with an untreatable/incurable brain tumor, in pain – that I would have a choice. I don’t think, I know. If I were in her shoes, I too would move to get access to the medications that would give me a choice about when to die. I don’t know whether I would actually use them, but I would ensure that I was in a position to have that choice. Because, I would need to feel that I was the one in control, not the disease.

     

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