Hi HER2-ers,
I'm brand new, balding after 17 days post chemo #1, and happy to join this website as it is so specific to HER2neu and being "young". I have not been thinking of myself as young for a few years now, so it is nice that in the cancer world 42 is still considered young. In a few days I will be completely bald and then I am sure to feel almost like a newborn.
I discovered my little 1.4 cm lump while on vacation and managed to get it checked apon my return to Vancouver, three days after starting my training for my job as a Vocational Rehab Consultant.
Less than a year ago, I graduated with a Master's degree in Voc Rehab Counselling. The kicker in my case is that I did my practicum as a Rehab Counsellor at the BC Cancer Agency. I provided clinical/rehabilitation counselling to cancer survivors, mostly breast cancer and brain cancer survivors. I co-facilitated a support group for brain cancer survivors, along with my practicum supervisor who now leads the Young Women with Cancer group I attend at the BCCA. I have been to the group twice now, and sat in the very same chair, and in the same room where I provided the counselling I did there during practicum. Talk about surreal, eh?! I remember saying 'I hope not to see you guys again, at least not in the cancer context'. Hm. Maybe I shouldn't have said that...
I feel I have massive ace in my pocket in dealing with my diagnosis from having met and conversed on the topic of cancer and its psychosocial intricacies throughout my practicum. I remain impressed with the strength I see in other survivors in the same way I did as a counsellor. The thing I feel has shifted is my deepened appreciation that I too have immense strength within myself...more than I ever imagined. When I hear "You are so strong" it resonates with how I do feel about myself now. Part of me feels extremely vulnerable and another part feels like a warrior queen. I feel I can hold these two feelings at the same time within myself and they are not mutually exclusive. I feel it takes strength to accept/show vulnerability. I have felt proud of myself for having risen to the occasion of the intensive training for my new job: I have compartmentalized my emotions and tamed my monkey-mind to the extent necessary to take in and remember the new information. Now I need to prepare to be off from work possibly...I know that dealing with fatigue and chemo brain are very real possibilities.
Now I am living with cancer, I am observing the changes in my body with interest and, of course, concern. I have questions about the future and how my ability to work will be impacted as I understand the average time off from work for breast cancer survivors is 6 months. I am not a candidate for long term disability as my diagnosis landed prior to the 6 months of employment mark; I understand that if I have no cancer one year post treatment I will be eligible for LTD which puts my mind somewhat at ease. I wonder how my appearance will change and whether I can expect menopause etc. etc. etc. I feel especially heartbroken that I cannot share this diagnosis with my 85 year old mother who has Alzheimer's, but I know I am doing the right thing in protecting her from this knowledge. Ignorance truly is bliss, for both of us.
The waiting periods for answers have been excruciating, but I feel things have moved very quickly for me: I was diagnosed on February 4th and am about to have my second chemo treatment soon. I look forward to the full meal deal in treatment. I have, so far, only had a lumptectomy (knock on wood, or breast expanders...i hear they are very hard). After 6 months of chemo I will have more surgery as the cancer cells are "at" the margin, not in. They will look at what is going on in the breast at that time and discern how much radiation to apply. The same time the radiation starts, so does the 9 months of Herceptin. 15 months, and watching the clock every minute.
I know I have things I am thankful for: my cancer was not in the margins; it is a case of early detection; my lymph nodes are clear; Herceptin...exists!; I do not have children to worry about; I am socially connected at this stage in my life; my employer is fantastic and has made accommodations for me to continue to work aspects of the job that do not involve time-sensitive decisions or face-to-face contact with clients; my mentor is an experienced cancer survivor supporter; I know all of the counsellors at the BCCA; my friend has offered to have me as a roommate throughout my treatment as needed....amazing!
I have swallowed my pride and reached out for and/or accepted help in the form of drop-in chats with friends, accompanied walks, portioned meals for freezing, deliveries etc.. The nicest thing is that my friends, friends-in-the-making, and family have remained flexible and accepted that their visits may be declined or postponed as needed. It's nice to be able to bank their help for a time when it is truly needed.
The first 24 hours post chemo were a nightmare and I can thoroughly understand why someone might develop anticipatory nausea. I started vomiting 5 hours after the chemo..it seemed to come from nowhere with no real head or stomach signs as warning and it went on 4.5 hours at which time I told my boyfriend that I was starting to feel demoralized: it was time to book it to the hospital ward at the BCCA 6th floor. That was the fastest taxi ride I have ever taken, and man did those windows come down fast! I was rehydrated and given intravenous anti-nausea meds and then released at 2 a.m.. By 8 a.m. I was up and making french toast for breakfast! Ah the wonders of medicine.
So how to end this rambling first entry...I am hopeful. I wish strength and hope to all of my "sisters" in cancer and the same for their supporters. I may be producing a mini-documentary some time down the line and would love to have ideas on what to include that might be interesting.
Meanwhile I am a lover of the arts and reflect on a poem by e.e. cummings with the line "a little innocence creates a day". That is my approach in a nutshell. Here is to the day.
May 29th update:
Hello again HER2ers and supporters. I survived chemo #2 with relatively flying colours, thanks to the help of my sister-in-law who is a born caregiver and to a new med. I was prescribed Emend, an anti-nausea medication that prevented a repeat of my first (supposedly quite rare) reaction. At 33.00 a pill I am really, really glad that this med is covered by my extended health coverage! I took it along with all of the other anti-nausea drugs, not in lieu of them. My friend Deborah again sat with me through the administration and the nurse expertly moved fast to pre-empt any anxiety that could develop in anticipation of a repeat problem with finding a good vein to use. I also hydrated myself to the gills before the administration so that my veins were plumped up. Although I was prescribed an anti-anxiety med, I decided it wouldn't be necessary to use as long as I could remain conscious of my in-the-moment feelings.
I suppose it is not entirely necessary to share this, but I broke up with my boyfriend a few days ago. It was a long time coming and I was very clear about my reasons why...and they were not connected to having cancer or any of the physical changes or anything like that. I just became much clearer with how my relationship was looking in the 'big picture' of life. I think it is very important to not not end unhealthy or so-so relationships in the face of big issues where leaving someone seems like a crazy idea. More importantly, I think it is important to distinguish one's reasons for wanting an end to be clear and not indicative of a reaction to having cancer or what have you. This is especially important, because who wants to muddy the issue? Certainly, I think, the motto "life is too short" becomes more poignant in one's decision-making and in my case I have let this motto guide my decision.
Work has been supportive and I have found the following to have been particularly helpful: I can work when I am well enough and stay home when I don't feel up to it; I have a space set aside for myself which is quieter and where I have ready access to a washroom; my co-workers are cool with my bare-headedness, as wearing a wig or head cover has been a nuisance..my hair follicles hurt in patches of my head. Having management say simple things like "It's good to see you here" feels really supportive without going overboard.
June 13th update:
Chemo #3 was on June 10th for me. Emend worked it's wonders again, and I was able to stay on top of the nausea. Feeling quite strong when all is said and done. I gained two pounds since the last chemo and realized I could use Gravol as a 'breakthrough' drug to deal with nausea and control my desire to use food to control the acid reflux I was experiencing...thus less weight gain...I think. No biggie...wise not to worry overly much about the weight gain thing, as I think it might be inevitable over time (for me). My oncologist has recommended 20 minutes cardio per day if possible, which I will attempt to work into my weekend routine at least...too pooped after work.
I am really excited to be able to fly over to Salt Spring Island to see my mother and I think the timing will be good, as my eyebrows and eyelashes are disappearing slowly but surely and this will be more difficult to hide from my intuitive old Ma (Alzheimer's aside). My next chemo will fall on, of all days, Canada Day. Oh Canad-ug! Alas, beggars cannot be choosers in this game sometimes. I am just very thankful for the expert caregiving my sister-in-law has offered. What a godsend to be able to rely on someone through the toughest parts of treatment! I really recommend the use of a social calendar to arrange help. Google calendar has done the trick for me, in tow with group emails (I used to dislike them, but they sure make sense nowadays!).
Keepin' the spirits up on my end.
Hope everyone is finding some peace out there in the sisterhood.
Ciao until next update!
July 5 update:
Hello again. The Canada Day chemo went quite well...although as far as parties go, I have seen better. Did meet a really nice couple in the chemo room though, and shared a dealy bobby Canadian flag hairband with my chemo cohort member... who as it turns out is one step ahead of me and has a very similar breast cancer to my own.
I have been very happy with the prescription drug for anti-gastric acid I am using this time...Tums just was not doing the trick. Too bad I didn't figure that out faster, but oh well.
Generally, I am very thankful the sun is starting to show its strength. I myself have felt a real hit to my energy level with this 4th chemo. I will attempt a return to work again this week, and it does look like I will be able to be productive again, if I pace myself and if the responsibilities at work remain manageable given my energy level. All in all, not much to report. Face feels puffier than ever, which isn't so bad...I look forward to attending a seminar on eating with breast cancer (my type) so that I can try to get a handle on the foods I should focus on and away from.
Meanwhile, bring on the summer weather: it feels like elixir on its own! I am getting better at realizing that missing some of the events of the season will not spell the end of me, but I sure will relish in any upcoming jazz or summer festivals. Right now I tell myself it is better to conserve the energy and the money and wish those who can partake a jolly time out there (while I look on longingly). My time will come again.
By the way, I went to a barber shop to take my unruly 10 mm left-over hair (mostly bald) down to a less Bill the Cat-looking length (around 3 mm). That was one funny episode...me negotiating how much of a millimeter I would like off. The clincher was when the barber suggested he do what they call in the biz, a "fade", or slightly shorter length around the ears and the neck. Honestly, you would have to look really hard to see the fade for the lack of actual hair on my head, but it was the thought that counted. Very charming.
Til' next time.
July 22 update;
Well, well, well. Two consecutive visits to the BCCA later...on Thursday I had my first administration of the wonderfully confidence-boosting Herceptin (Transtuzamab), which technically is not chemotherapy. No allergic reaction to that, which was such a relief. Then today (Friday) I had a 4 hour admin of Taxol chemotherapy, for the first time. Again, all systems go...no allergic reaction. How indescribably nice it is to NOT have nausea to experience! It is wait and see as to how the chemo will affect my body and mind. I was told that around day 4/5 onwards I may experience mild to quite disabling joint pain...and so I wait and see. I have planned a RTW for day 4, interestingly enough.
The last Young Women with Cancer group was very rich for the amazing women and issues that were discussed. I find the once monthly touch-base the group provides gives just the right amount of ongoing support and information-sharing. I even recieved a compliment from an incredible young woman (the youngest with breast cancer that I have met) on my writing here. Hi there! (You know who you are!) It is great to be able to have some sort of writing outlet for what I am experiencing...
One of the realizations I had during the group was that I will continue to document this experience to help myself compartmentalize my feelings in what I feel is a very healthy way (for myself). Thinking aloud it dawned on me that I will be getting myself a chest to put the paper and audio-visual memories into for posterity....down the road I can reflect on this era of my life by revisiting this chest of mine. No pun intended... What have I done so far in terms of this documentation, you ask. Well, within a week of diagnosis I went for a 200.00 photo shoot of me in my naked (almost) glory...it was an honoring of the breasts and my relation to having them and the fear of losing them (at that time I did not know I would not be losing them). That was one raw photo session, with, as it turned out, a photographer whose own mother had died of breast cancer. Another thing I did was video document the shaving of my head by my very pregnant hairdresser in her home-based business...I have an aftermath video of me visiting her with her newborn, which was so nice for the juxtapositions involved. I have also video documented, with the help of my friend, Deborah, every single chemo session I have been to including this recent marathon. So, I have a lot of visual-audio material in my possession and this is really the only writing I have done. Anyway, it helps me keep myself grounded, which is great.
I have found that, in group, the fact that I have had only a lumpectomy sets me apart from most of the women who are grappling with changed body image and relationship and sexuality issues related to mastectomy. I also find that the fact that I do not have children sets me apart from the majority of women in their mid-thirties to forties who do have little ones. These two factors just highlight, once more, how varied each individual woman's experience is. I am alone in the group for hiding my diagnosis from a parent with Alzheimer's. We are, indeed, each alone in our own way.
I have been reflecting more on how the past experiences I have had in life have augmented my coping ability in terms of this illness. To use a psychological term, I am talking about how I have built resilience. This is not a bragging point, but just, to the best of my ability, an attempt at analyzing how my own resilience has been built and is now serving me. I truly feel that all of us has a degree of resilience that sometimes we need to remind ourselves does exist. For myself, the rehabilitation counselling experience was huge for so many reasons, the simplest but most powerful being exposure to the issues cancer survivors face before experiencing them myself: I read "Picking up the Pieces" before my diagnosis and can heartily recommend this read. Living in solitude in Northern Alberta for 6 summers (age 23-25, and age 30-33) as a fire lookout was hugely helpful and formative in terms of my sense of self-knowledge: knowledge of how my mind, and emotions work. Living in isolation means facing your demons and living with your thought patterns and handling the very strong emotions which inevitably boil to the surface with time, and then working through them on your own. Knowing how to meditate, and the principles of watchfulness in meditation-speak, has been extremely helpful. Although I admittedly do not practice meditation in a concerted manner in my everyday life, I do carry with me the understanding and will draw on that calming process from time to time. Again, I don't think it hurts to remind oneself that, hey, I have been through tough times before and I have it in me to face this.
I know my emotions will well up no matter how well I think I have them under hat, and I truly do not want to suppress those precious teaching-tears. I was feeling very 'close to the surface' a few weeks back. Everything was just so poignant and I would tear up at the things I heard and saw...For example, I ride the bus to work and sometimes it is very crowded...which makes me nervous in terms of protecting myself from uncovered coughs and germy fingerprints, and so I stay near the front. I usually try to get a seat in the disabled seating section near the front, but unless people see my bald head those seats aren't easily given up, and people don't necessarily think that I need to sit down..and quite frankly I don't...but I like to for the sense of security it gives me. Anyways, a woman saw my headscarf and gave up her seat for me, and I gladly took it. I was moved by her thoughtfulness and her gesture, let alone her insight: she had seen me lurch towards a seat that was promplty filled and gave hers up for me. Well, there I may as well have been told my dog died (and I currently do not have a dog, by the way). I tried my best to lower my chin into my chest to hide my tears. I realized that I was well in need of what I call a "terrified-person cry". I was yearning for that cathartic kind of cry. The kind that feels like one has been cleaned by a spring rain and blotted dry and wrapped in a warm blanket afterwards...you know the kind of cry. I had that kind of cry frequently in the early days of the diagnosis and now my intellect was doing a terrific job of supressing the emotion. I was trying to conjure it instead of it just grabbing me, and thus my efforts to conjure were falling flat...if that makes any sense. The short and the long of it is that I was very thankful when I found myself surprised by how the emotion did grab me again, even though inconveniently on a crowded morning bus. My gaurd was down and in swooped the truth of that great underswell of emotional life within. Indeed, I know now, more than ever, I need, want, no desire, a good and authentically sorrowful cry every now and then. I know,also, that the shower is consistently the place where this free-flow of tears is teased out with all of the other water falling around. In a way it is a place where I feel I am connecting with that sacred element and nature works its healing powers even there amongst the relic shampoo bottles and razor blades. I have realized how important it is to cry. Just cry. I will leave it at that for now.
Til again.
P.S. I hope I made you cry :-)
Meghan
Update August 8th:
All is going really well post chemo #5 with the Taxol. The only bothersome symptom I have experienced is a left foot that feels like it is asleep. My right foot is sometimes a little tingly, probably in sympathy for the left foot (kidding).
I have continued to work and am astonished with my foolishness in terms of working long hours throughout the week. My average day is 8.5-9 hours long! The work is hard and I feel as though I need to be as productive as I can and learn as much as I can before stepping away from the job during further chemo/surgery/radiation treatments. It is awkward being a new employee and having a different yardstick for performance than all of the other trainees, who are now performing the job at full capacity (and already someone has quit because it was too much to handle). The fact that my job is modified, continues to mean that my co-workers function as the 'frontmen' for me in terms of meeting with clients; I try my best to do the background paperwork. When all is said and done, the understaffing at my workplace continues to be highlighted especially given my circumstances.
As much as I feel very tired at the end of the day, I have not felt the fatigue issue for myself, nor any inhibiting 'chemo brain' or 'foggy brain' as it is now called. I also feel that keeping a routine in going to work has served as its own therapy for me. I am making the choice to work as long as I can through all of this knowing that I only have 15 weeks of EI to play with, and no other back-up funding available outside of that. It is not that I don't fantasize about sitting under a tree in my mother's orchard listening to the birds sing with daily swims in the nearby lake! Sigh. I know that statistically the average breast cancer survivor losses approximately 12,000.00 in earnings during treatment and is away from the workplace for an average of 6 months. I am lucky in that my surgeries (so far, knock on wood) will only have been lumpectomies, which require much less time off and associated problems that interfere with job maintenance and return to work.
The Weekend to End Women's Cancers is coming up and my friend Penny Harris has been fundraising for this amazing cause (funds going to research). I know I may well owe my life to the efforts of such fundraisers!
On a lighter note: I found a beautiful silk scarf at Holt Renfrew, after a long search for a really nice one. Normally I would not spend 110.00 on something to cover my head. But the right scarf, with colours that are flattering and that goes with different tops is really priceless. I ordered a free scarf from It's a Wrap and it arrived in the mail also. It is beautiful, but totally the wrong colour on my afterall. Anyone in search of a rust-coloured paisley patterned tailored silk scarf out there? I really recommend contacting It's a Wrap and taking advantage of their free scarf offer...the company is in the U.S. and all you need to do is pay for the postage for the scarf to be mailed to you. A group of women send a support card along with it: it is a really beautiful gift idea also.
That's it for this update. I wish everyone a really great time at the WEWC weekend coming up. Let's PARTY!
Meghan
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