Cristin@01
When I hear fit, I clearly imagine people in shape, running in the coolest sport outfit available. Basically, not me. I am not sporty, not in “that” shape and I would only consider running in case of fire…. In fact, the only physical activity I like is yoga and I practice it for the peace of mind it brings me.
How does that make sense or relate to a website (www.cancerfit.me) encouraging people to keep moving during their Cancer treatment? Not much, I admit. Nevertheless, these months of chemo and radiations post lumpectomy where the first ones in my life when I felt the urge to keep my body active.
Living in UAE, due to the limited annual paid sick leave days allowed, I worked full time during the treatment. I also tried to maintain a mini social life and at the top of the priority list, I tried to be a mum for my three kids. That kept me busy though I didn’t have the strength to attend yoga classes.
So why do I say I felt the urge of keeping my body active? Well, I intuitively realized that my side effects (joint pain, neuropathy to mention few) were more bearable if I had walked. And I “forced” myself to go for walks daily even in the post chemo days. Even for 20 minutes. Even if these 20 minutes would exhaust me and result in a 2 hours nap. My body aches were less intense. Also, besides the benefits of keeping my brain active, working limited my immediate chemo brain impact. It forced me to remain organize, do lists, set agendas, plan and basically keep going. I don’t know why but intuitively I know that’s these walks helped my focus. Don’t ask, I just know it.
As soon as I finished the treatment, I attended a Cancer recovery yoga session lead by a fellow cancer survivor. Gosh, that felt good. I was sore, stiff, had lost my balance due to the neuropathy but week after week my body woke up. In 2 months time, I could attend a normal yoga class. I cried being back. Moving like a beginner but I completed the 90 min despite my giraffe legs. Two months later, I still feel I move like a beginner but with 10 years experience and much more wisdom and respect for my body.
We all have our own ways to help our body during these tough moments. No matter what we choose as activity, the main point here is not to give up. To follow our instinct. To honor our body. To prepare for the recovery. To be body and soul.
Published in www.cancerfit.me, February 2019
Chemotherapy is one of the main treatments used for Cancer and a scary word for many patients.
Actually, there are many types of chemo drugs used, several objectives (before surgery to reduce a tumor, post to reduce reoccurrence, palliative to soften the progression of Cancer), various protocols and different ways of administrating it. Medical oncologists generally follow international protocols depending on the exact diagnosis of each patient (area to treatment, cancer staging etc.).
What to expect? What about the side effects? Does it hurt?
These are some of the questions that people regularly ask and I felt sharing my experience could assist [To be specific my experience relates to a Breast Cancer on stage 2a, triple negative. Quite often, Breast Cancer doesn’t require Chemo and is treated with radiotherapy, surgery, hormonotherapy, or targeted therapy. On triple negatives, these last two are of no use so chemo had to be done.]
The oncologist surgeon explained me what would be the protocol few days after my lumpectomy. Good news, tumor was gone but it was a triple negative and the protocol to avoid reoccurrence would then be 4 dose dense of AC chemo (Doxorubicin -also known as Adriamycin-and Cyclophosphamide) and 4 dose dense of Paclitaxel. I would need to have a Port-a-Cath inserted in few days and chemo sessions would start 3 weeks later, just ensuring I recover from the lumpectomy.
I must say, it came as a slap in the face as my doctor had so far suggested I would have radiation and hormotherapy. The news would have come few days earlier, I was ready for anything. Whatever to save my life. Anything to guarantee I will see my kids grow and become a grandma one day. I even had offered my breasts on a tray to the surgeon.
He explained the Port-a-Cath insertion, and with kindness but assertiveness ensure it would be fine. From a side effect point of view, he mentioned the hair fall and cooling caps.
It is shaken up that I left his office with few information booklet and loads of questions.
The Port-a-Cath was inserted 7 days later on daycare full anesthesia surgery. I won’t detail it since I already wrote about it.
I tried to find info in Dr Google ensuring I would only look at official sites as I had promised myself on day one of the diagnosis. I wasn’t after medical effects that Doctors could help with the little tips and practical info which could help.
From my research, I concluded that I would go for the following feel & look good options:
There was no much else I could do. My mum would come back to help me with the kids, not knowing what to expect as side effects. I asked for chemos to be scheduled on Thursdays so I could rest over the weekend and only take one sick leave per cycle. At work, i didn’t take commit on anything on the Sundays and Mondays following these sessions and my boss offered me to work from home on these days.
Then, a lot is about your mindset, using brain vs. emotions and vice versa depending on what would help me to make it through.
I decided I wouldn’t allow the fear to take over me prior to the first session. I managed to convinced myself that it was a nonsense stressing out over something I didn’t know. Maybe it wouldn’t hit me too badly. After all, my oncologist had shared a list of potential side effects insisting that there were not applicable to all and intensity would vary.
I decided I wouldn’t count how many sessions, and handle one day at a time.
I came with my Mum to the hospital with my little bag (socks, phone charger, book) and after being admitted for the day and reaching my room the protocol started:
So far so good. The anti-histaminic made me dizzy and the steroids woke me up. Nothing unbearable. Just a bit hyper resulting in lousy focus.
The chemo was administrated about one hour after with no pain and after I got saline and the port cleaned. I could go home. No drama. No pain. I was asked to come back for an injection boosting white cells after 24h and be careful as my immune system would weaken after 7 to 10 days.
All pre-medications allowed me to get through the first 24h without major issue. It hit me after as it would every second week as follows:
If I summarize the AC cycles, my immune system and the acidity were the worse. I shaved my hair few days after the second cycle.
After 4 cycles every second week, the protocol changed as planned to Paclitaxel.
Side effects were different.
My issue here was the pain and after the first cycle I started having the hand and feet syndrome and peripheral neuropathy. Later, it would force my doctor to push a session for a week and reduce its dosage. The doctor explained me that chemo side effects are monitored based on Toxicity levels (1 and 2 are treated and treatment continues, 3 and 4 serious and require adjustments or interruption of treatment). This is the reason why it is crucial to monitor and report side effects to your oncologist.
Strange enough, in between I had good normal days when I would forget about all the bad days and simply enjoy my energy.
Overall, my body reacted very strongly to chemo. I am one of a kind!
In fact, I ticked the boxes of 90% of the side effects. My body fought like hell.
It might sound scary but even if it was tough, I won’t lie, I could have taken more. Determined to heal, I really was hesitant to accept to push a session and offered the doctor to do few more to ensure I would be fine in the same mindset I had offered to do a double mastectomy. Actually, it is not an “A la carte” menu and treatments are seriously defined by protocols and discussed in medical boards.
How I kept up? Again, I decided few things.
Even my closest friends didn’t really witness side effects. In fact, many saw me on the chemo day but that’s the piece of cake part. Probably only my husband, parents who came home to help really saw me in bad days.
I tried hard not to show the kids but let’s face it, they probably saw more than I hoped to but I kept smiling. Genuinely. I was blessed and alive, doing all this so Cancer wouldn’t come back. I would have done and will do anything with a smile to be given the chance to be a grandma one day – that thought kept me going.
During these days, all what I learnt in my yoga practice in terms of living the present made full sense. What a blessing. Unfortunately, I couldn’t practice yoga and chemo brain refrained me from meditate but I fully lived the present as a gift.
Today, it is hopefully behind me and it feels like long ago though I completed chemo treatment only 4 months back. Amazing how body and mind are so resilient.
When you say Cancer, hair loss comes quite fast in the conversation.
I was born with hair. Dense brunette hairy baby. The Latino side of me I suppose.
I had a bowl seventies cut, then in the 80s a square with fringe, no fringe, long straight hair and later in my teens the wavy perm version of it (omg). I said yes to hubby with long straight hair in a bun and cut them shorter after each kid but it always on a square haircut base.
On April 15th 2018, on my post lumpectomy appointment the surgeon told me that I had to have chemo. Who knows maybe my hair won’t fall.
The oncologist would later tell me that it would be 8 dense dose chemo sessions (2 cycles of 4 sessions). All the 3 drugs used, being known for their aggressive effect on hair. I would be bald.
I never thought that wigs would be a solution for me. It is too hot here in summer (Chemo would start in May and finish in August) and why trying to look like the person I was when I would never be the same?
Since I started chemo 4 weeks after the surgery, 3 after the insertion of the Port-a-Cath, I had time to sort my shawls. The pure cotton ones would be great to cover my baldness. I shopped few more online in my favorite colors.
I would be bald till end of the year potentially so had the full right to feel good, to look good…. no chance I give up and wear black or white hoping to blend in the crowd. Nope, I like colors so instead of wearing shawls I would wear head scarves.
The surgeon had told me about cool caps. I read but the feedback was not that encouraging. Not working with aggressive chemo drugs, uncomfortable and even painful (hours with wet hair and the freezing cap on the head), friends told me about migraines. I thought I would give it a try but in the first chemo day I was told that I had to buy my own, close to 3000 AED, not covered by my insurance for a very uncertain result. I concluded that I had other more important challenges than hair.
I read and was told that hair would start falling soon after the 2nd chemo. Potentially by chunks. Advice was to cut short to get use to the new me, buy very mild shampoos and massage slowly.
I decided to cut in a pixie and called my very special, big hearted hairdresser: Karine. What she did was simply thoughtful and touching. She booked me as her last client of the day and said we would cut slowly. At my pace. As short as I could take on that day. And she did. For 2 hours. We eventually laughed. It wasn’t bad at all. I was celebrating my new hair on that evening with my husband and wonderful friends. I wish you all to have friends like that. We had champagne to celebrate my new pixie.
For the eyelashes and eyebrows, I used specific cosmetics purchased online and brought by my mum from France. I knew I would lose them but was hoping it would be the latest possible.
Few days before starting chemo, in the hospital waiting room, I met with Jenifer. We had the same haircut hence realized we were waiting for the same Doctor. We discovered we had many more things in common than the haircut and the treatment. She would be the one to introduce me to the Pink Ladies, and with Marisol (a friend leaving in Paris), a guide through this journey.
Not much happened on the first chemo from the hair point of view. Well, they started falling but only me would notice. I was careful, extra careful washing my hair. It was stressful. I hated the importance it was taking. Honestly, the other side effects were more reasons to stress but hair loss is the “symptom” of cancer in the eyes of the others, my kids in particular. Appearance.
After the 2nd chemo, the fall intensified. I would not wear light colored tops anymore, lean comfortably on armchairs, not lay down on sofas as I was leaving hair behind me. Worse, when my little one would hug me, I would discreetly hold her hand to collect the hair left in between her fingers. I don’t even tell you the details of the fall of the body hair. Yep. Not fun.
I decided to take back control of the situation 4 days after that chemo, when my lovely maid found me crying on all fours in the bathroom trying to collect hair, kneeled and cried with me. No way the coming months would be stressful because of hair. How dumb. It grows back.
I called Karine again. The time had come to shave. I explained the kids. Anyway, the hair on my head was dead. Still hanging there but I could pick them up without forcing. I wrote to the teacher of my little one as I knew she would really struggle having a bald mum. The teacher would help her if required.
Once more Karine was wonderful. Really. I am do thankful. I arrived with my head scarf in the bag. She had set up a station behind a screen, with the mirror covered. She had even thought about the water and tissues (for both of us as she said).
I left after 1hour (combed so all the dead ones would fall, shaved twice, shampooed to remove hair etc.) with my head scarf.
Honestly, shaving was a relief. I didn’t really cry. I was moved by Karine kindness but not sad. Just relieved. I would be able to focus on something more important. The funniest was to discover nice moles on my scalp and a big birth mark in the neck that no one had ever seen since I was born hairy. The very same birth mark than my Venezuelan grandpa who had passed away when I was 17. It made me very proud, you can’t imagine!!! That was a sign. A beautiful sign from heaven. I would be a proud bald lady. Yep.
Back at home, my 6 years old daughter told me she didn’t want to see me without the scarf. The boys were more quiet but uneasy. I kept it during the whole dinner, evening. Long, too hot, I was desperate to get rid of it. On day two, my husband spoke to the little one and after dinner I announced I would go to my room and uncover. Coming out of the bathroom, she was there in my bed with daddy waiting for me. She was ok but made me promise not to go out bare head. That being said, later, she would lend me her conditioner so it would grow back faster blond like Rapunzel. So sweet,she was trying hard. I promised and thanked for the conditioner.
In the following days, I realized the dead roots on my head were painful and falling while showering. Not too sure why but I felt the urge to get rid of them. Nothing dead in my body. It was a strange sensation. It should all go. So I shampooed daily twice and rubbing hard. I also took epilator when finished the (painful) job of removing the remains in 3 sessions. A bit violent but it has to be done. I felt good. In fact, I felt good when I was finally totally bald. Shining scalp.
During all these months, I played with colors, knots, basically used head scarves as styling weapon. I also bought hats. I voiced the idea of getting henna crown tattooed but the kids were against. I respected their opinion of course. At home though I would hang out in all my glorious baldness.
My husband was fine and of great support. We joked about our baldness, took pics of our scalps. I empathized for all he was suffering for years with the cold of AC. Once, he saw a bald lady in the street and told me that she was looking great uncovered, suggesting I could do the same.
In fact, I covered for the others, (and the sun), not for me. All stress caused by the fall was gone the minute Karine shaved and I found the birth mark. I sent my bald picture to my family and few friends. Some were shocked. Of course, they didn’t know the stress of the losing hair. The baldness was showing them the illness, symbolizing all what they feared. The bland reality.
I would not cover in the hospital, at home or in the car for example. All my close friends and family saw me bald. As I mentioned in a previous blog post, I could see in the eyes of some that they weren’t comfy seeing me as I really was.
The eyebrows and lashes started falling toward the end of the chemo. That was a bit more difficult but they had resisted for a long time. They had done all what they could. I hadn’t make up my eyes during the whole period to protect them (make up removal would be fatal) and put the protective Chemo mascara gel but it wasn’t enough. In any case, I never removed the only brow on one side and the 2-3 left on the other. They had resisted and I felt I had to respect my body for its resilience during the harsh treatment.
I started radiation with nothing left hair wise. During the 6 week radiation treatment, it slowly at first, and then very quickly came back. Basically, about 2 months after the last chemo, brows, lashes and a very decent amount of hair was back.
Seeing the early baby duvet coming by back, my daughter “authorized” me to leave the house uncovered. I did immediately: supermarket, office… everywhere. This is me says the song. Well, here I come.
A fellow Pink lady came during the summer on her way to shave so I could show her how to tight scarves. She wrote me a thank you note saying that she had being inspired by my “freedom”. I had never seeing it from that angle, but yes, without my hair I feeling free. I couldn’t care less. Hair was the least of my worry. The more bare-able of all chemo side effect.
An unknown gent in an elevator recently told me I was looking great and it was brave (to hang out with Sinead O’Connor / GI Jane haircut). I could see in his eyes than he knew the “why”. Maybe his wife, sister or himself went through a similar experience. It was kind of him and if I look good it is probably because I feel good and more alive than ever.
Today, hair is growing back. Grayer, I think. I will know in few weeks the new color and texture since it changes afterwards for most people. Surprise, surprise. Actually, quite exciting. I like the new shade and got compliments. Now, I shampoo and it foams. By Christmas or 2019, I might even comb. And I might keep my pixie cut. Maybe not dye it if the gray is confirmed. Anyway, I am not the same person than “before” so a new hairdo is perfect. And it will give the opportunity to visit Karine more often. Oh, and I will keep using head scarves and hats for fun.
One of the steps involved in the chemo treatment is the insertion of a port-a-cath.
Accepting and getting comfortable with this little foreign body was actually a journey for me.
The port-a-catheter is a small device used to draw blood and give treatments, including intravenous fluids, drugs such as chemo or pre-chemo drugs, or blood transfusions. It is quite often placed via surgery on the right top part of the chest.
Accepting the idea of carrying a foreign body can be a challenge. Not only, it generates discomfort when carrying a bag, fastening a car seat belt but it can be quite visible.
None of this can’t be addressed with healing time, using port-a-cath pillows, nice shawls, cotton wraps, ponchos or head scarves to cover it, if we keep focusing on it. In reality, in our daily activities and interactions, very few people would notice our port. Actually, only other port users will pay attention: somehow, it is a rallying symbol!
Personally, the thought of keeping the port-a-cath for few months after the end of treatment during the follow up phase, felt like a Damocles sword representing the risk of reoccurrence at first. Giving it some time and thoughts, sharing feelings and experience with others, the port-a-cath ended up being my best ally for the treatment. My chemo ally. At the beginning, I would focus on the benefits of the port to keep quiet the inner little scared voice in me. Eventually, I asked the medical team to use it for all required drug administration and blood collection during the hospital admissions.
The port is your chemo treatment best friend: easing the IV, protecting veins, allowing better mobility during the chemo session.
Basically, even if it involves another scar and some precaution to prevent infections or other complications, chemo would be more difficult without a port-a-cath.