BC Becky

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

Category: recovery

  • My hair attachment

    At a support group the other night, I mentioned that our bike trip prepared me for hair loss. After riding around Lake Ontario, I cut my hair really short. I lost all attachment to my hair – as it was under a bike helmet most days – and shorter hair meant it was really easy to manage. So, when chemo meant losing my hair, it didn’t have a huge mental effect on me … I went into the experience with curiosity rather than fear and sadness.

    So now I am amused at my attachment to the regrowth of my hair. It is now becoming long enough to be unruly. At this stage, many people get a buzz cut, to cut off the peach fuzz ends and allow the growth of the new hair (which post-shower looks much darker than my hair did pre-chemo). At the moment, the white ends make it look grey. But I just cannot do it. I’m attached to my new hair (and my eyebrows are starting to come back too). So, I’m using the advice from one of the Facebook groups I’m a part of – coconut oil (like the stuff you use for cooking) is great to help calm the unruly hair. It turns to liquid in your fingers, and then re-solidifies as you shape your hair. Quite neat really.

    I’ve started to go without a chemo hat/buff to some social occasions and support groups. I usually arrive with a head covering and then remove it, mostly because it is too cold outside not to have something cover my head when I first go out. Someone in my support group who also goes out with short hair commented, that you need to be prepared to have the cancer discussion. When she doesn’t want the topic to come up, she wears a wig. Otherwise, she is happy with her new do (which is really short but looks great). I never adopted a wig – I didn’t feel the need to – I also spent most of my time at home or around friends that know what is happening – so there is no need for me to hide the cancer – perhaps if I were in Ottawa I would feel differently. Who knows. For now, I’m just intrigued by how attached I am to my unruly peach fuzzy hair!

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  • See-saw days

    I think the hardest part of surgical recovery are the see-saw days. What I mean by that is the constant change between days where you are seeing significant improvements and days were you are feeling significantly worse … and day-after-day the ups-and-downs become more and more challenging.

    Now I’m have see-saw aspects to the days. Mentally, I’m feeling better. Physically, not so much. Today’s physical struggles are related to sleeping without the wedge pillow last night. I really wanted to sleep on my side – which I did successfully. The problem was, that when I was too hot I didn’t have the strength to remove the blankets … when I was too cold, same thing … no strength when I was in that position.  For the later part of my night’s sleep I slept on my back without the wedge – and was too flat – I dreamed that I was carrying groceries and then jumped into a swimming pool (no idea why), and then I was unable to get myself out (the groceries magically disappeared) – it was just me and the side of the pool, but the water level was too low – there was no way I get out (it was a 1.5 feet from water level to edge of pool) – then suddenly it was only a few inches from the water level to the edge – and then I woke up … with abdominal pain … my abdomen is not yet ready for the flatness of the bed. I took some pain meds, put the wedge pillow back on the bed, and promptly fell into a silent, dream free sleep for a coupe more hours (thank-you pain meds).

    Now I know … we’ll wait a week or two more before we try that experiment again … but it means, physically today is going to be rough … I need to keep reminding myself, it is OK, to up the pain meds today … after a difficult night, I need the extra help … reducing pain meds should happen on good days, not bad ones …

    Mentally, I’m doing better. I’m feeling mentally stronger. I’m coping better with the joint pain (hmmm… increased pain med may be partly responsible!) … I’m typing more, and thinking more … I may even start to do some more planning … I’m thinking about academic stuff again, and potential pathways for the future … they call it ‘recovery and renewal’ … the term feels right today.

  • Cancer language and the war metaphor

    As much as I hate war … I must admit that the war metaphor for cancer is working for me right now.

    There are many bloggers who talk about what is wrong with the war metaphor (fighting cancer, cancer as a battle, etc) – and in particular how that metaphor is problematic when someone doesn’t survive – or when they are diagnosed metastatic and “winning” is not achievable.  I get it – I get the problems with cancer and the war metaphor …

    and yet …

    it is so working for me in this moment. Over the last week and a half I have been dealing with horrible joint pain – joint pain that sometimes makes it difficult to get out of bed, get out of a chair, get on/off the toilet – joint pain that is leading to depression, as I am having difficulty seeing the light at the end of the tunnel right now (don’t worry, I am getting help) … never mind going for a walk – which is current the only method of exercise I’m allowed to do right now …

    So, when I’m walking, struggling to put one step in front of the other, and my iPod shuffles to “The Warrior” by Scandal I am energized … I am reminded that I CAN DO THIS … because I AM A WARRIOR … I so need that right now … so for me, in this moment, the war metaphor is working!

  • 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.

  • lightening up …

    It may not seem like much, but today marks an important transition in my healing. It has been four weeks since my surgery, and the first time since my last surgery (November 19) my breasts don’t feel heavy!  They feel like they are starting to soften up (a hard spot that was there yesterday isn’t there today) and they are no longer feeling like I’m carrying around led.

    I may still have a drain (although that too seem to be lessening in its output – I’m hopeful that it might be gone by the end of the week as well). My celebration for today is my lighter noobs … I can wear a tank top comfortably without a bra … yay! My skin between my breasts is still pretty sensitive to touch and pressure (so sports bras and tank tops are more comfortable because they don’t have any zippers or clips in the area between my breasts.

    As I mentioned back in the beginning, my process has always been to examine my breasts in when I’m in the shower. I stopped doing that during chemotherapy. Right after surgery, my examinations changed to examine the incisions after every shower before putting on dressings. I’m now back to a point where I can examine my breasts again – except now I feel lots of hard spots which before might have indicated tumors – now the hard spots indicate where the internal grafting was done. With time, the hard spots soften and they begin to feel like normal breasts. I lump won’t mean the same thing anymore – as I no longer have breast tissue – except at the skin or perhaps a little against the chest wall (although they try to scrape that off during the mastectomy as the goal was to leave no breast tissue behind).  Now, I don’t know what a lump will mean – but I know that lumps are a normal part of the healing process at this stage, and I celebrate when the lumps dissolve into soft tissue as that is a sign of healing.

  • And then there was one …

    I was really hoping to have both my drains pulled today, but truth be told, neither had output low enough to warrant being pulled (close by not quite). I do wonder if it had more do with my mental health than anything else; when, they did remove one of the remaining abdominal drains. So, now I wait another week with one drain … better one than two, but truthfully, I really wanted to see both of them go! Fortunately, the drain removal itself felt like nothing … I didn’t notice it at all. It will be interesting to see if the output of the remaining drain increases because it is now the only abdominal drain. We’ll see how that goes.

    Once I have two days in a row with low enough output then I can call and they will pull the final drain. I also have an appointment with my plastic surgeon on Thursday next week, so the final drain might end up going then. I might hold the record for the longest drains … as of tomorrow it will be 4-weeks (ugh).

    I’m also feeling achy and my joints are really sore. I didn’t walk again today in part because my foot hurt too much. My left foot hurting meant that I was limping when I walked, which isn’t good for me (this started yesterday evening) … so I figured it was better that I not walk and hope that the foot is feeling better tomorrow. The joints seem to be stiffer today, so I think the walking makes the joints feel better. I’m so looking forward to being able to do other forms of exercise. I’ll be on a bike one week after the drains come out.

    I’ve signed up for the Live Strong Live Well program at the Mountain View YMCA. The one I signed up for starts January 28 – so hoping by then that I don’t have drains and I’m mostly off the pain meds. The program is a light workout – but also gives me full access to the YMCA – so I can take any of their classes (zumba and cardio belly dance look interesting to me – might a while before I’m ready for either of those), including the ones in the pool. Once my incisions have healed, I’ll be able to swim again, which will be nice on my sore joints. The interesting part will be the lack of feeling – it will feel very weird to be in the water and not have feeling on parts of my breasts and stomach – not too dissimilar to how I felt swimming with neuropathy when I couldn’t feel parts of my skin in my legs and feet (could feel temperature, just not the sensation of the water). So, it will be interesting to see how it feels the first few times I jump in the water.

    It will also be interesting to see how I feel about changing and showering at the gym. My body has a lot of new scars. I’m not particularly vain (heck I posted a link to a picture of my incisions already), so I’d like to think that I’d be OK with just changing and not worrying. If someone stares, I can always say “this is what breast cancer looks like” … but really, that is their problem, not mine.

    Right now, I so want a glass of wine … unfortunately, that too shall have to wait until I’m off the pain meds (at least mostly) …

    I am very thankful for my friends (and friends of friends) who are helping ensure we stay well fed. Last week was Nancy (one of the Honers) who made us a lovely dinner that lasted three nights, and tonight’s dinner is thanks to Katie, one of my cancer walking and group buddies. I am looking forward to a time when I can return the favour (or pay it forward).

     

  • New years resolutions

    At this time of year, people often blog about new years resolutions – things they will do differently in 2015. I’m not a bit fan of new years resolutions. I’m more of a goal oriented person. I like to set myself goals for the coming year.

    My first and foremost goal for 2015 is to recover from cancer treatment. I want to regain my strength. I have four cycling related goals.  The first is to get back on the bike. Before I can ride a bike again, I need to have my drain removed (I still  have two drains which are producing a healthy amount of fluid). The drains will be removed within the next two weeks – as at a certain point it becomes unhealthy to keep them in. Once the drains are out I need to wait one week before I’m permitted to bike – this is because we don’t want any fluid build up after the drains are removed. Then training begins.

    I have two local cycle challenges and it is uncertain which order they will occur in. The first is to ride from the fire station to the top of Mount Hamilton. I did this the week before chemo when I was feeling strong, so doing it again will be a demonstration that I’ve gotten my strength back. The other is a ride we had planned for the end of AC chemo, that we had to abandon because the last round of AC knocked me down. This would be for hubby and I get up early one day and take the CalTrain into downtown San Francisco with out bikes and then bike home (or as far as we can during daylight hours). I am hoping that by the end of April I will have achieved both of these.

    The bike cycle adventure for the year is the Young Survivor Coalition’s Tour de Pink, in October. They haven’t announced where the West Coast ride will be yet. Unfortunately, they don’t allow recumbents on their rides, so both Scott and I will be riding our road bikes. The fundraising is also going to be a huge challenge, at $2500 each! But the cause it is a good one, and the ride sounds like a lot of work (over 100km/day) but also a lot of fun. The physical challenge will be a true demonstration of getting my health back.

    On the walking front, I have two events planned – the Avon Walk (accepting donations now – I need to raise $1880), and the Peak Hike for Prevention (fundraising requirement of $250). I did the Peak Hike last year (bald). It was the last long walk I did, as the effects of Paclitaxol (chemo) made it impossible for me to walk any distance. I was part of an amazing team who have been hiking since the hike started 19 years ago. This year we are trying to grow the group to 50 hikers. I am hoping to be able to do the 11 mile hike rather than the 7 mile one (which I did, but just barely). In preparation for both of these events, I hope to do some more hiking on the various trails that surround us.

    On a professional front, at some point I hope to be looking for a job. I need to first ensure that I’ve got my physical strength back – that is my first priority. I’m also working on a four-week free open online course called “Should I blog?” that is targeted towards anyone with cancer who is considering blogging. I plan to offer the first course in March and offer it monthly there after. After the first six month I’ll re-evaluate and see what needs tweaking. So, although I will be looking for a job, that likely won’t start until August or September when I’m feeling strong again.

    Although active treatment is over, I do need at least one more surgery. It is what is known as “revision surgery” and is mostly a clean up surgery. Once we see how my body heals, there is an opportunity to go back and tweak different aspects – to fix scars and move fat around to remove lumps and fill in divits. I’m told the surgery is much easier than the one I just had (pretty much anything will be easier than the surgery I just had). I can officially say that this last three months have been the hardest of my life (harder than both Africa and RAGBRAI) – so I am ready to move on.

     

  • 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!

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