No Hair, Don't Care

Who knew that your hair falling out would hurt? I had been told that my hair would begin to fall out approx. 14 days after my first chemo. Oddly enough, when I woke up in the morning, I didn't have a bunch of hair on my pillow like so many other people describe. When I brushed my hair though, that's when I saw it...all of my beautiful hair stuck to the brush and on the floor. My social worker at the hospital advised that I should cut my hair shorter to get used to that look before it all fell out. My feeling was, what is the point in cutting half of it off if it's just going to fall out anyways?

I lasted exactly 18 days after my first chemo which I guess is longer than most. At that point, when I washed and dried my hair, it was coming out pretty fast and furious so I went to get it chopped off. The place where I got my wig was able to tie my hair into small pony tails and cut those so I could keep the majority of it either to donate or for extensions later on. At first as the hairdresser started cutting, I wondered if I could have waited another few days but it turned out this was the right time as when tying one of the pony tails, she pulled it right off my head!

The social worker explained that for many people, loosing their hair is the worst part. You have to mourn the loss of it before you are able to move on. I cried as each pony tail was being cut but found that after the shock of looking in the mirror, I put on my wig and was myself again. A lot of people say that you will not want to wear your wig at home because it is uncomfortable but I wear it from when I wake up in the morning to when I go to bed at night. Everyone is different and my recommendation is to do whatever you are comfortable with.

To Port or Not to Port

Getting a port-a-cath was a big stumbling block for me and caused a lot of stress. The port is implanted under your skin to allow for easier access to a major vein instead of a nurse trying to find one in your arm each treatment. My concerns with the port were many, among them being the fact that a foreign object would be put in my body, the procedure that was needed, the risk of infection/clotting and worrying about it being visible when wearing lower cut tops. The other thing that bothered me most was how the doctor approached it, as if getting the port was not a choice. In our initial meeting, I was given a date for the port procedure along with a small information pamphlet and that was it.

After reading other people's posts online, I know my fears were justified and I was not over-reacting. It took me a while to come around and I did end up getting the port, I just wish it would have been presented to me differently. There are other options (ex. a PICC line) that I was not told about which also added to my frustration. As a young, active person, the port was definitely a better choice since the location of the PICC line is right on the inside of your arm, it is bulky and cannot get wet so you have to keep it dry in the shower. I just wish that someone would have explained all of this to me along with the pros and cons and let me choose rather than making the decision for me. For anyone else debating whether to get the port, here are my words of advice:

• Ask a nurse or doctor to show it to you so you can see what it looks like. Ask them about the benefits of getting that over a PICC line or regular IV.
• The radiologist that inserts the port has some flexibility in where it is located. Talk to them ahead of time and if you are worried about it being visible, ask them if it can be placed in a location where it is hidden. The morning of the procedure, I tried on some t-shirts and tank tops and made a mark where I wanted the port to be placed. The radiologist was excellent and able to put the port where I had marked.
• Take the Ativan that they offer before the procedure if you are nervous.
• Follow the instructions they give you regarding caring for the incision after it is inserted. I was very careful with it and have not experienced any issues. 

I am not advocating for the port, in fact, it has been in my body for almost 3 months now and I refuse to touch it or even acknowledge that it is there but after weighing the alternatives, I am glad I got it. 

Wigging Out

How does one prepare themselves for chemotherapy and the ridiculous number of side effects that the doctors have warned you about? I don't really have an answer to that question but can tell you what helped me:

1. Go to the dentist - This may seem like a weird recommendation but it is a good idea to get a cleaning before chemo begins to help prevent any mouth problems. The Adriamycin and Cytoxan combo especially is known to cause mouth sores so the better shape your teeth and gums are in before chemo, hopefully, the fewer side effects you will have.

2. Get a wig - Looking as "normal" as possible during chemo was a big deal for me so before my hair started falling out, I knew I wanted a wig that looked as close to my regular hair as possible. After researching different wig shops online and going to check them out, I found a place that made the wigs in their store and offered a length that was similar to my own (24 inches). It was hard to find a place that had a longer length and a colour similar to mine (dirty blonde) which is why I am glad I started looking right away as it can take a while.

The other debate is whether you want synthetic or real hair. I have heard people argue the pros and cons of both but my personal recommendation is definitely real hair for a couple reasons:

• It can be highlighted to look like your natural colour
• Synthetic hair does not look and feel the same
• It can be styled and blow dried, exactly like your real hair would
• It is more comfortable (I also have a synthetic wig and was constantly scratching my head when wearing it)
• If you are going to be wearing a wig for 12+ months, why not spend the money and get something that makes you feel confident

My wig was over $2,000 but when I wear it in public, the majority of people would never know it is a wig. It is so comfortable, even I forget sometimes! I know that this is expensive but it is worth looking into your insurance to see how much might be covered.

3. Read information online (with caution) - I say with caution because there is a lot of information available and not all of it applies to your situation. If, like me, you find that the information in the phamphlets from the oncologist are not providing all of the answers to your questions, chat groups can he useful. Do keep in mind though that there will be some people who experienced terrible side effects with chemo and others that had none. I am the type of person that needs to know what they are walking into and if you are the same, doing a bit of pre-reading might not be a bad idea. I found this article was helpful: http://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/what-expect-when-having-chemotherapy

4. Take a leave from work - Being off work during chemo has helped me through treatment in so many ways. Not having to book appointments around my work schedule, sleeping when I need to sleep and just generally taking the time to focus all of my attention on my health has been so important. I realize that some people choose to work during chemo as it is a distraction and others are not in a situation financially where they can take a leave. Everyone is different but for me, not having to be in the office 9-5pm on top of everything else going on has taken away so much stress and allowed me the time to concentrate on what really matters.

A Second Opinion

In the 3 weeks following my diagnosis, I met with so many doctors, I could not keep them straight. The process by which doctors were assigned to me was a bit frustrating as rather than picking my team of doctors based on their merits and recommendations, I felt like I had very little choice. This was both a good and a bad thing:

The Good
This process was quick - I was able to meet with a medical oncologist, surgeon and radiation oncologist all within 2 weeks of being diagnosed.

The Bad
What if I wanted a second opinion? What if I am not comfortable with one of the doctors?

I felt like I was being pulled in different directions as it was a balancing act...I didn't want to delay treatment but at the same time, wanted a second opinion regarding the surgery. I also didn't like how I was made to feel like a second opinion wasn't allowed. Questions from doctors about why I would want to consult with another surgeon and being given the run around when trying to figure out how to get a referral were things that I was not expecting to deal with. The advice that I would offer to anyone in a similar situation is to go with your gut. If you are not comfortable with one of your doctors, you have every right to explore other options. The healthcare system in Canada is different than the US but just because I am not paying out of pocket, doesn't mean that I should feel like I am being cornered into making a decision that will affect the rest of my life. In the end, I did end up getting a second opinion and am glad I did.

Embryos on Ice

Once it was determined that I would need chemotherapy, one of the first things the doctor warned me about was the possibility that I may become infertile. I would start on Adriamycin and Cytoxan for 4 cycles followed by Taxol for 4 cycles and she explained that chemotherapy in general, and specifically the AC combo can put women into early menopause. There is no way for the doctor to know how you will be affected, however, typically the younger you are, the more likely it is your ovaries will produce fertile eggs after chemotherapy. I am hoping this will be the case but did not want to risk it as my husband and I have always wanted kids (and had actually been planning to start a family right around the same time that I was diagnosed). Not only finding out that I had breast cancer but also facing the very real possibility of never having kids was a huge blow. 

Especially when chemotherapy is given before surgery, time is of the essence if you want to try doing a cycle of IVF. With my doctor's referral, I called a fertility clinic and booked an appointment right away. After speaking with the doctor, we decided to try freezing some embryos before I started chemo and we had 15 days to do it. Based on what I have read, there are not many couples that choose this option for a variety of reasons. Cost can be a major factor but there are some programs like Fertile Future that aim to make fertility preservation treatment more affordable. Timing is also a concern but if it is important to you, IVF is worth looking into.

I am triple negative so after consulting with my oncologist, she thought it would be safe to start with the hormone injections right away. After a tough 15 days of multiple needles, ultrasounds and the egg retrieval, we now have frozen embryos and hope that having kids will be in our future!