Chemo and Losing my Hair

The information overload you receive before you begin chemo is a little daunting. Kind of like those commercials that list all the possible side effects in the last 10 seconds of the commercial.  You may experience nausea, vomiting, fatigue blah blah blah or death.  Do most pay attention to that part of the commercial, if it's promising a certain level of improvement in lifestyle? I know with chemo and all the life threatening side effects listed, I had no option but to go for it.

Before I received chemo, my oncologist recommended that I attend chemo prep training.  It's basically a 3 hour session on what to expect. My husband I diligently attended, notebook in hand. Whatever info we could gather to help us succeed, we were willing to listen. The session was informative and somewhat daunting. The main tip, I took away was to avoid simple infections or I'd end up in the ICU. Seriously - she told us that a simple nail infection has landed chemo patients in the intensive care unit.

My first chemo treatment was very nerve wracking! Some people can react to the treatment quite negatively and not knowing how I was going to react was a tough one to manage for me. To this point I'd already had allergic reactions to a couple medications they'd given me, so I prayed this chemo would go easy on me. My adorable husband had contacted many of our friends and asked them to send a video wishing me well. He put this together with well over 50 videos. Oh my heart! I watched this on the drive to our session and it gave me the strength to face the challenge ahead. My treatment went well that day with a minor irritation.

Within 3 weeks of starting treatment, my hair became brittle and began falling out in handfuls. Losing my hair was never an ordeal in my mind, I don't care about hair just make me well. BUT when the hair finally did come out. I found it hard to look in the mirror,  I still avoid looking. I don't see myself. Shortly after, I lost most of my eyebrows and lashes.

I have yet to don my shiny head to many aside from my immediate family. It's just a comfort thing I guess. I wish I could proudly walk around without a hat, as I see others and they are beautiful. I just can't seem to get over that hurdle.  I do have a beautiful wig that I have wore on a few occasions.

To each their own I say. But being bothered about losing my hair surprised me in this journey. I'm far from vain, but I do look forward to getting my hair back!

Tips and Advice to Help Manage Chemo from a Newbie

I'm in the midst of my chemo battle, week #12 of many. This is just advice from my experience. We are all individual in our responses to chemo and there are so many chemo cocktails that affect people differently, this is just my take. If I can help even one person with improving their side effects that is success.

1. Take your pre chemo meds  - I take steroids 12 and 6 hours in advance of my chemo treatments. Make sure you eat crackers or something light before. Set your alarm for your middle of the night pills as well.  I usually have to wake at 4am. I suggest having your meds set out and ready,  I can be pretty drowsy in the middle of the night and have woke up the next morning unsure if I even took that meds at 4am.

2. Drink lots of WATER - It is recommended to have 2 litres of water each day during and after chemo. I suggest hydrating well the day before as too. This sounds like an easy task but when your mouth starts to feel fuzzy or everything starts to taste like cardboard or metal it gets a little more difficult.  I suggest adding a little juice and a lot of ice if you can. Keep drinking the water, it helps!

3. Take your anti-nausea meds on schedule - I am on 2 different meds for nausea and I can't imagine how terrible I would feel without these in my system. Set phone alarms or have an awesome family member or friend that reminds you (my husband keeps me on track thankfully!)  You are better to stay ahead of the race instead of get behind in meds because it is harder to catch up! Trust me.

4. Find a support system -You will need help through this process. I'm not good at accepting help from others, as I'd prefer to be the helper. This was and still is difficult for me. 

You will have people (amazing people) that step up and just tell you, this is what they can to do to help and they do it.  For our family, we had so many people wanting to help us, and we really didn't know what or how to manage this. Some dear friends decided to setup a meal delivery schedule to help us weekly. It's been unbelievably helpful for our busy little family!

There will will be others who just don't know what to do but they'll want to genuinely help. Give them some guidance if you can. A simple visit or walk is helpful when you need a little time outside.

Some people will fade out of your life for a bit, that's ok.  It's not something you should be expending your energy on.  It's not easy for some people to deal with and you shouldn't take it personally, just learn and move forward.

The people you need in your life will come forward and those friendships will forever be cherished.

5. Rest and listen to your body - This is a tricky time. One day I'll feel good and be able to do most normal activities and then next day be wiped just trying to walk up 4 steps.  Listen to your body when it tells you to rest. BUT also enjoy being able to do what you can when you feel like it. 

I've had lots of people telling me to take it easy and don't overdo it. I know it's because people care but it really bothers me. I am not feeble and incapable. In fact I'm pretty strong willed and determined on good days and on bad days I crash and do absolutely nothing. That's ok!

If and when I do get sick - it's not because I've done too much it's because I've picked up a bug that my chemo saturated body can't fight.  My system will become weakened no matter what I do or eat - it's the chemo that beats me up, not my wanting to live my life as full as I can.

6. It's ok to be sad or mad - With illness comes a lot of discussion of being strong and positive.  There is so much focus on being strong that it makes you sometimes feel pressured. It's normal and necessary to have all kinds of emotions about what is going on in your body and life. Being sad doesn't make you weak.  Everyone is different. 

For me, I have to run things through my head and sometimes writing helps; while other times talking helps.  My husband and I have had some very difficult discussions recently, but we have also had some great chats about planning our future and fun times. I'm hoping for a 25 year remission/cure but I also have to plan for the other side of the coin.

Getting professional help is also something to think about. You are dealing with a lot of curve balls that have never been thrown your way and professionals can help. Not only for yourself but if you have a family, they may need it as well. Communication is key in our life, not always easy but crucial.


Don't get ahead of yourself in this journey, day by day is the best I can do for now and I'm ok with that. 

I hope this has helped. Hugs to all that are on this journey and all the best.

Diagnosis

On March 12, 2019, one month after celebrating my 44th birthday my life changed forever. I woke up in a recovery room to the view of my surgeon informing me that the originally planned laparoscopy hysterectomy did not go as planned. I was diagnosed with Ovarian Cancer - stage 2B or III High-grade serous carcinoma.

My husband stood by my side as my medicated mind absorbed this news. I don't remember crying but there were tears, many tears. It's all a blur and I prefer it that way.

The next 24 hours, I would endure were horrible, to be honest. I was rolled to my room and pumped with pain meds, 17 staples, and 3 new holes branded into my abdomen. Within hours I began vomiting (reaction to pain med). In the midst of my vomiting episodes, my husband and I would have brief discussions about what was just handed to us. My heart broke for him, I could see his pain.

That evening we had to call our precious family and inform them of our news. News they were not prepared to hear, I was assured that they didn't "feel" as though I had cancer, very unlikely. Words you cling to, but probably best left unsaid given my circumstance.

Skip to five months later and I am in the midst of a chemo battle, I have good days and bad ones. I have weekly chemo treatments  (dose dense chemo) that likes to knock out my immune system and suck my energy.

While on summer vacation I was hospitalized for Pancytopenia. It's a funny word for not such a fun condition.  It's when a person has low counts for all three types of blood cells: red blood cells, white blood cells, and platelets. I received IV antibiotics and blood transfusions, thankfully my body bounced back after a week or so. It was scary for me and my family, but so thankful that things improved.

I do have many good days and I am so thankful for them. I rest when I have to and squeeze in family fun when I can. Make the best of what you have.

My family is living this rough life by my side. I have an amazing husband who cares for me and our household along with a very demanding job that never stops. We have 3 beautiful daughters who have to manage this cancer beast in their life as well and I hate that they have to; they too are amazing humans. I have the most loving helpful parents that are here for all of us. I have awesome in-laws that also are here for our family at a moments notice. We are blessed to have a massive circle of close family and friends ready to help with what we need.

For the past 4 months we have been receiving meals weekly delivered to our door, an incredible help when life has you tied into this whirlwind of illness followed by appointments and family life. We have been overwhelmed from the love and support from so many friends and neighbours.

We know we are blessed and I'm so very thankful, we just don't know how to ever repay the love and care we have received!!

I promise not all posts will be so serious!! I know my grammar and punctuation isn't great but it really isn't about that :-)