reflections on end of treatment

Here I am staring at a blank page wondering what to write.  Perhaps it is because I'm at what appears to be the end of my cancer journey. Ten days ago I had my last Herceptin treatment and this Friday I have the port removed. In the past month since my last entry (I can't believe how quickly time has passed by) I've been on a yoga retreat, submitted art to more shows, lots of the usual social outings, and the usual household and mommy stuff.  All pretty good and positive. However ending treatment is odd.  I'm definitely happy to not have to be showing up to and anticipating having the port removed makes me a bit giddy and long with the anticipation to just live my days without showing up to a hospital every few weeks or more frequently.  There also is apprehension: about what next? how will I adjust to returning to work? will I be able to retain my health?
The wisest words I've come across is just keep stepping one foot in front of the other. Really, now matter what happens, it is most important to be in the present moment and keep living life to its fullest.

What would you do?

Perspective is such a strange thing.  Yesterday I was at the chemotherapy unit (and I am very happy to say I have one more treatment left). It was unusually quiet and I settled into my book with a few other patients milling around.   A few minutes into my wait, a young couple came into the wait area, the man was in a wheelchair and promptly collapsed himself onto the bench seating nearby me exclaiming how everything hurt, making an oh so familiar sound of discomfort. His partner put his head on her lap and was stroking it.  I was quickly transported back four years to when I was trying to support and be there for my husband.  It became hard to not scrutinize this young couple further, but I really didn't want to stare. 
As we sat waiting for our respective treatments, I couldn't help but feel the desire to reach out to them.  I wanted to say, "Hey, I've been there" or "If you want to talk to someone who knows that space, here's where you can reach me." But I didn't say a thing. I felt at the same time I'd be intruding; really, a moral dilemma.  They, of course, had no idea what knowledge I hold, and I did not want to impose.  I found myself starting to compose a letter:
Hi anonymous young couple,
I don't know your situation, nor do I want to intrude. What appears is something I strongly relate to.  Perhaps you, the young woman, could be me 4 years ago - my husband was diagnosed with a rare cancer which then became terminal.  If you want someone to talk to that's "been there" you're welcome to contact me...
The couple got called for treatment before I finished the letter and had a chance to discreetly slip it to the young woman. I learned something from this.  I have been thinking a lot about "what next" for my future and pondering the possiblity of doing work with families impacted by cancer/bereavement.  I figure if I had such a strong desire to reach out, that perhaps this is an area to explore despite my hesitations, despite logically wondering if I want my life experiences of the past few years to become my work life and career.

On appearances

Today I was reading a blog entry, ‘Looking Good’ by Sam Albert (http://ultra-sounds.org/author/skipthewheatgrass/). She writes about how people are always telling her how good she looks, as if there is an expectation that she may look worse, being ill.

This made me reflect on a recent interaction I had with a colleague whom I meet occasionally.   This time, she said, you know you are really looking good, if someone came to our table and we said one of us had cancer they wouldn’t know which one.  I questioned this and she added that I don’t have the dark circles under my eyes or the hollow look around my eyes any more.  I would say, I actually do have dark circles under my eyes still, but not as defined as before. Furthermore, this colleague on previous occasions has told me I look great, which I’m pretty sure was not the case; or perhaps the expectation, as Sam Albert surmised, is that someone whom is “battling" cancer would look worse.

This makes me think that either my supports are either trying to bring me up and make me feel better by telling a “little white lie” or they have really grave perceptions and are amazed by how well I fared through treatment.  Really, what does a cancer patient look like?  Certainly I see at the hospital and other places really ill and frail looking patients who have likely been battling for awhile and/or the cancer has progressed far enough to seriously impinge on bodily functions.  I saw this with my husband.  But even in his case, he really didn’t look gravely ill until the last 4-5 months of his life.  Short of the hair loss from certain chemotherapies and the weight loss side effects (both which are not givens in cancer treatments but common to cancer treatments), often cancer is an unseen illness for many patients, much like mental illness or chronic fatigue syndrome.  Many patients “pass” as healthy without any health concerns if one looks at outer appearances.  In the chemotherapy waiting area, it is interesting to look at the people and sometime the only thing giving away the patient is the hospital wristband.

Chemotherapy post script

In the "Real World of Chemotherapy' I had some questions for my oncologist to answer. I stated that if I get a resonable responce I would state it here... and I think I did.

As I understand, Taxotere/Docetaxel that I have been for three rounds works by stopping cell division and provided cells with a death message. This is by the Taxotere interfering with the growth of spindles, thus providing the message there is no more growth to be done and the cell must naturally die.

This does not account for the large amount of swelling that my body goes through and my concerns for inflammation.  My oncolgist explained the swelling and inflamation is more related to the steroid that they put me on the manage the side effects of Taxotere.  When the steriod wears off, my body creates more inflammation to compensate for the change. Fortunately the Taxotere continues giving its die messages for a week, and the inflammation is cleared up by then.  Interesting to learn about. And, I think my oncolgist enjoys having my interest in the process.  Upon parting, he heartly shakes my hand and grins about looking forward to seeing me the next time - now in 12 weeks. I may have to come up with more questions for him.

I think his attitude is good as he has interest in the process of cancer and what the drugs do.  He could be the type oncologist who just listens to side effects, prescribes medication to manage the side effects and send the patient on his/her way.  I would find the second scenario completely frustrating and likely feel that it was taking from my empowerment as a patient to understand what is happening with my body. I've been blessed with doctors who are a good match for me.

Hurray

Just a quick post that I finished my past heavy duty chemotherapy treatment. Now I just need to go through the week of bad side effects for the last time. Still more to go through with medical tests, radiation and ongoing booster drugs, but this part of the journey has definitely been the most gruelling. Tired today, so off to bed.  I have blog ideas but they will have to wait until I am feeling more energetic and better.

The Real World of Chemotherapy

My mom said a couple of days ago “the cure seems worse than the disease” – well not entirely true, but certainly chemotherapy is taking its wear and tear. I have just wrapped up chemo number 5 (of 6) and the side effects are seemingly worse/cumulative. Yesterday was the first day that I felt more myself in pretty much a week. Having spent so much time with the side effects I have been wondering about chemotherapy quite a bit.  I have also noticed things that are not listed side effects, but perhaps something to note based on my anecdotal experience.

I am noticing that I have not yet received a mosquito bite yet this summer. True I haven’t been outside as much, but I do love outdoors and have been eating with family dinner outdoors, and I am usual one of the first to get bites.

My acupuncturist says I smell like a hospital, even when I haven’t been in the hospital for two weeks.

I have noticed the bristles on my toothbrush turning to be a pale yellowish brown colour.

My white clothing, after being washed, has patches of pale yellow-green, mostly close to the port area where I receive my chemo injections and where I may sweat.

As my chemotherapy drugs changed to Taxotere and Herceptin on round four, I am now surrounding my fingers and toes with ice for an hour during infusion to help ward off the potential nerve damage from this drug and to prevent my nails from failing out. Come to think of it, I think that is worse than losing my hair as I tend to type on the computer a lot and like to play piano. (Most of these side effects are from Taxotere or FEC taken earlier; Herceptin, technically a bio-drug, can cause heart problems and can augment the severity of chemotherapy drugs).

I am wondering how exactly this drug works. I have been experiencing serious swelling in my joints and noticeably of my tongue and glands.  I know from my naturopath that the tongue is a way of establishing body health and can reflect inflammation.  It follows from the amount of joint/muscle pain I have as a side effect that perhaps I am all inflamed, arthritis is a disease of inflammation as is cancer.  I understand from my reading that a bodily environment of inflammation promotes cancer growth. So I am wondering how does this drug work if it creates inflammation beyond anything I could imagine.  I’m asking my oncologist next meeting to see if he has more explanation as to how Taxotere works, beyond the standard: chemotherapy drugs attack fast growing cells. If I get a suitable reply I’ll share it on my blog.

I don’t want to get into a long litany of complaints or listing side effects that are typically shared on any medical site/handout from the oncologist, but I do have my questions about these drugs.  What seems apparently clear is the strength of the drugs. It is very clear to me that I want to detox as soon as I safely can (without taxing my body too much or interfering with the effectiveness of the chemotherapy drugs).  I already plan to ask my oncologist about guidelines and plan to set a prompt appointment with my naturopath. When I get to detoxing, I’ll share what I learn from that too.

dilemma

Today, my son woke up with a runny nose. In day to day life with a young child who attends daycare on a regular basis, not all that concerning.  This is normal. However, as a person receiving treatment for cancer and knows, despite the "good drugs" that counter side effects, including increasing my white blood cells to normal levels despite the anticipated 30% drop caused by the chemotherapy drugs, I need to do everything I can do to prevent infection.  I know there is the option to send my son to the grandparents, but I don't want to. I know that he gets the most comfort from me and he is most comfortable with being home.  If it he becomes ill enough to be away from daycare, I suppose that is when I send him to the grandparents.  Thank God for family who live nearby and are fantastic supports.

just about life

I have been feeling I have not written in my blog in awhile.  I started writing about perspective/attitude but I don't feel that entry is ready to be published; however, I do want to post something. I thought about this: what has been getting in my way to writing recently?  Well, life.  I have been going out and enjoying life. 
Today I was a terrific workshop with Reid Tracy and Cheryl Richardson (http://www.cherylrichardson.com/schedule/) on writing.  I have been writing since I was a small child.  My folks have poems I wrote in grade 1.  I have been journaling on and off throughout life. Writing is something I have always done. And, recently with this sense that I should be writing more (encouraged by others who have been encouraging me to share)  and sharing my experiences and what knowledge I have from them.  The writer's workshop seemed like a natural thing to attend. And, well, after attending a full day workshop, making dinner, picking up my son, taking time to play in our backyard, doing our routine bath, and story time; I am exhausted.
Yet this is typical of me. Yesterday I was at the Look Good, Feel Better program  (https://www.lgfb.ca/). Wednesday I had help to clean up my house and I did some organizing and sorting too ans spend time with my husband's family. Tuesday I realized there were more pieces of stuff to do (pay bills, complete the census, calls to make, grocery shopping). Monday I enjoyed the company of a colleague who shares my love of the arts and my larger family had dinner together. I think I decided to share some of my day to day activites because this is a reflection of what keeps me going.  I have been really engaged in what I love to do.  This also includes an expressive arts class that I have been participating in too. I think all these self-care activites and social activities with loved ones increase my energy despite chemotherapy.  I still need to be careful not to get carried away and extend myself too much.  But I figure I must be doing something right as everyone keeps telling me I look great; often people are surprised I am in the middle of chemotherapy.  That said, I know everyone is different, and this is just my experience in how to keep my energy up and keep feeling well.
Time for bed after a very full day.
Good night.

Sh*t Happens

This morning started fantastic. I had my loving angel child snuggling with me, being cooperative and eating a good healthy breakfast.  I am emotional today as I am getting my genetics results and there is now a request to put in port (for chemo and blood samples) for tomorrow that I need to make a decision about.  I go upstairs to get ready to leave, find myself taking a call with a medical professional to discuss this port thing in more detail and to make a decision for tomorrow.
While I talk on the phone, it seems too quiet so I make my way downstairs to see that my angel child, that sweet little guy, has pooed on the chair he likes to stand on in the kitchen.  He has poo against the sliding door, there is poo in his hand, he is gleefully tearing around and smearing! I am still on the phone at this point getting pertinent information and coaching him to stay in the kitchen – all I need is for him to dash to the livingroom carpet and upholstered couch – and the patient scheduler of this procedure is being told, “I’m sorry, potty training issues” and keeps hearing, ”Stay in the kitchen”’ very firmly in her ear.  Once phone call is finished I take said angel child to the bath and promptly find myself crying.  A call to my dad calms me, he drives over and takes over getting the little guy to daycare.  I spend my morning making my kitchen spotlessly clean and disinfected. I wonder if this is a reflection of what little guy feels about all this medical intervention his mom is involved in?

So today has been a mixed sort of day.  I should let those who are following know that I am doing well post first session of chemo.  I was concerned about catching a cold with a cough arising yesterday, but that seems to have passed.  Perhaps I need more sleep.  Yes, I was incredibly fatigued on Sunday – you needed a spatula to lift me up out of bed.  Then Monday I had boundless energy – I’m guessing the impact of the drop in white blood cells and then the drug that replenishes them musta kicked in. However my auntie, who had the same chemo regime a few years back, tells me the white blood cells drop in the second week and this is when I need to be ultra vigilent about infections.

The genetic testing results are negative, so that means I am not being recommended to do more surgery. Hurray!  As I shouldn't drink a celebratory glass of wine I opted for dark chocolate and dried cranberries for a treat. Because of the family history clearly has a genetic predisposition to breast cancer, we (my family members) are being asked if we’ll volunteer our blood to do more genetic testing and so researchers can try and understand what is going on with families where there is a lot of breast cancer but not BRCA 1 or 2. The genetics team I've been working with says they have about 20 families like this.

About the port, the port thing allows for blood to be taken and chemo drugs to be administered rather than being poked by needles each time.  I know this is going to be better for me and will eliminate being poked for everything in the next year; and I won't look like a junkie with track marks all over by the end of my treatments; however it is a medical apparatus that is on my being 24/7 for the next year and a bit.   I am not liking the idea that I will physically have something on my person to remind me of the treatment I am receiving.  I guess it makes the job of keeping positive and keeping “normal” a little more difficult.  Another challenge to wrap my brain around; breast cancer treatment sure does a lot to impact one’s self image - more about that and wigs soon.

Shifting the View

On my last entry, I was writing about my fears and concerns with chemotherapy. Even as I wrote that entry, I knew that I needed to change my attitude to be more favourable.  I just couldn't figure out what would be a positive spin on what was about to occur.  In studies, there are indicators that the more positive the patient is, the better they respond to chemotherapy and the less side effects the experience. To me, this is a challenge to then find a way to view the chemotherapy in a positive manner before chemo starts.

I think I have finally come up with a visualization with the help of some friends.  I am thinking that the chemotherapy drugs are entering my body to find the last dregs of negativity and of ill health.  I am going to view this as a violet liquid - I've been advised violet is strongly associated with healing - and imagine this as the injection occurs.

Now I am picking up on this post the day after chemo.  All in all considering, I think it went well.  Definitely feeling nervous to go in, not knowing how the drugs may affect me and the various side effects that may arise. How did it go? Well, I think. This is what I ended up doing during chemo. I went with my parents, several people have advised me never to go alone.  We waited awhile, I think for the hospital pharmacy to mix the drugs.  I started reading my Bernie Siegel book, Love Miracles and Medicine.  I also had prepared a cd of me reading one of his visualizations.  The day before the chemo treatment I met with a woman who does hypnosis, reiki and other alternative healing who gave me a combination of flower essences that she has used with others to help manage in impact of chemotherapy. 

When I went into have the drugs injected, we were sitting by a gregarious older man and his daughter.  He had a great sense of humour and kept a lively conversation, asking why I got special treatment by the nurses (upon receiving a popsicle and blanket to help manage side effects) while he had been coming for almost a year.  I joked back it was because I was a newbie. So not as much visualization as I thought, although I did imagine the injections and drip being able to clear any remnants of disease or negativity out of my body.  If I have bad side effects, then that is just my body emptying the "yucky bits" from my body.  So far, so good, only mild nausea and tiredness.

chemotherapy

This is a hard post to write.  I think I have been avoiding the topic of chemotherapy as I know the impact on one's body can be strong.  I am daunted after meeting with the medical oncologist; I feel confident in his suggestions for treatment, but it is overwhelming.  What it boils down to is 8 different drugs, the IV ones to be administered over the course of a year.  I was not expecting the timeline to be so long.  Then there is an additional drug to be taken orally for 5 years.  Why so much? Because the tumours were very aggressive and it improves my survival rate to be almost perfect.
However this comes with a big price in how it affects my body.  I am likely to start losing my hair in the next few weeks.  I will likely have nausea and other side effects.  The drugs will likely put me into menopause (that is seen as a more favourable response), and heart difficulties can develop.  Really, this is so much to happen to my body, when I barely take a Tylenol for a headache.  It also sounds like the fatigue can be fairly intense, so I need to come up with a plan for who will care for my son (and me) if I start having severe fatigue and vomiting. I apparently also need to be vigilant about a variety of things that can create infection as my white blood cells will be significantly decreased by one of the drugs. This is plain overwhelming. I'll see how this sits in a few days.
My plan now (besides the practicalities of finding a wig before chemo starts and rallying my troops to figure out who can commit to supporting me and when): to figure out how all this can be visualized as favourable to my body rather than "these things that are just happening to my body because the research shows this improves my outcomes".  I have some distance to travel in my mind to get to the kind of imagery that I want.  I know I need to counter the feelings of dread by visualizing positivity for this process.  As I write, I was wondering if I can imagine some sort of hydroponically fed plant that will gloriously bloom from the IV feed.  I'll have to work on this one.