I know it has been some time since I have hopped on to catch up with you all, let me start by saying that I am doing okay. When I say okay, I mean that I am doing better than expected in many ways. I have been able to enjoy a few days of “normalcy” where I was able to run a few basic errands, work on some crafts while hanging out on the couch, water my flowers, eat without fear of getting sick etc. It all sounds so dreamy I know LOL but my new normal and good days are the days I am not nauseous, bed ridden, or experiencing extreme body pain and fatigue. I have had a pretty constant severe neck/headache for weeks that I have just accepted is my new norm as no meds touch it. When I go out in public I only show my best self and no one would ever know all of the symptoms I am suppressing. If I can tolerate my symptoms I am going to try my hardest each day to be “normal”.
When I last updated you all it was a couple of days before my trip to Saco for my consultation at Madelines hair replacement for a wig. Tuesday evening the night before my consulatation I spoke with Tyler and decided that I would shave my head Friday night before my hair started falling out in droves. I felt good about the decision as it gave me a small sense of control in a situation I have had no control over so far. Wednesday morning came, I hopped in the shower to get ready for the day and quickly came to the realization that my hair was indeed starting to aggressively fall out after only one chemo treatment. I came out of the bathroom to show Tyler how much of my hair was coming out in my brush, like a continuous never ending strand. The universe was once again taking away any bit of control that I felt like I had. I was not mentally ready to loose my hair as I had mentally accepted that Friday was the day. Now here I was with my a handful of my own hair agonizing over making a new decision. Once I was able to work through the initial panic and fog it dawned on me that while at Madeline’s hair replacement that afternoon I could ask them to cut my hair in an environment that felt less traumatizing.
I had asked my friend to ride down with me and I am relieved that I did, having someone else present gave me a reason to stay strong and remain positive. When I arrived for my appointment I had a sense of resolve, my hair was going to be shaved and that was okay. Two months ago my waist length hair was part of my identity, something that I spent many tears thinking about loosing. I had spent the last several years growing it out and was so excited for my wedding photos with my long hair flowing in beach waves and braids. I could not stop fixating on how it would take years for my hair to grow back to the length it was. I think cutting my hair short a few weeks ago helped me mentally in the way that I realized I could be happy with my hair short when it does start growing back.
Madeline’s was a quite and soothing environment, we were brought into a private room which was a relief in itself for many reasons. My stylist was super friendly and put me at ease, we started trying on wigs right away, both synthetic and real hair wigs. My goal was to select one “good” wig that would feel like my real hair that I could comfortably wear in public or when I just want to look “normal”. I quickly realized that many of the wigs just felt like they had too much hair, they looked poofy and over exaggerated on my head. I asked if we could cut my hair and then try the wigs on again so that I could get a better idea of what they truly looked like on my head. The entire time I was sitting there I was just itching to get the hair cut done and over with, it is hard to explain but I was eager to get something done and over with that I was dreading. When my stylist made the first couple of swipes with the clippers I could feel her and my friend holding their breath waiting for my reaction. As my hair fell to the floor I just sort of felt numb, my resolve would not allow me to be upset. I was still cracking jokes and even laughed about my relief that I did not have a weird wrinkle face on the back of my head under all of that hair.
I think any woman that has been in this position is just so ready to fight cancer and be done with it that any of the steps along the way you just bare down and keep going. This was one of them… With all my hair on the floor it was kind of just like business as normal, I went back to trying on wigs. I ended up choosing a lighter weight, less expensive, real hair wig. Both to save on cost and hopefully make me more comfortable when wearing it. I could not truly see what my wig would look like as the style I chose was not in the correct color and would be ordered in my hair color. Just like that I paid, made an appointment for the 10th to go back to have my wig styled, hopped in my vehicle and drove home. I got home and started the anticipated wait for Tyler to get home and see me without hair. Out of everyone his opinion mattered most to me, I hate not being able too look and be my best self for him.
With the exception of when I was diagnosed and cried about all of the things being taken away from me I had not shed tears about my hair in weeks. Even when I cut it short, nothing.. it was just part of the process. I had accepted what needed to happen and made it my goal not to fixate on the negatives. When Tyler got home his face lit up looking at me, he was genuinely happy and could not express enough how good I looked with my hair buzzed. His love and reasurance and I guess my relief brought tears, but only for a couple of minutes. I had conquered the next stage of my journey and looked like a true warrior with my buzzed hair. I would cry again a few days later when all of my hair fell out in the span of 24hrs, I am talking going from buzzed to bald. I came out of the bathroom with my hair in patches following my shower and just looked at Tyler and the tears came. I think it was because momentarily I hated how hideous it looked, not because I had to look at it.. but because Tyler had to look at it. Again I was being irrational and silly but in the moment those feelings of despair even though short lived were very real. Many would be amazed that 5mins of crying got me through going from waist length hair to bald but it is true. As much as it sucks… I have bigger fish to fry and worry about.
One thing that I want to write about so that others can understand…I truly struggle with finding the correct words. But as part of sharing my journey I feel like it needs to be said. I have been told many comments ranging from “its just hair it will grow back” “your still beautiful without your hair” “you still look beautiful” “Hair isn’t was makes you beautiful” etc. While all of these comments are written with the best of intentions the build up starts to feel so dismissive and invalidating of my feelings and the trauma involved with loosing your hair at 30 in the prime of your life. Yes it is just hair, and the comments telling me I'm “still” beautiful without my hair warm my heart. It does not change how I feel without my hair, I cannot count the amount of times I have tried to express my feelings and had them dismissed with comments such as well your still beautiful, its just hair, or it will grow back. My feelings are still valid, its okay to feel angry or less than myself. Unless you have been there personally… be careful that you are not being dismissive of the person experiencing the trauma and their feelings, because they are VALID. This is just one example of many, but I more than ever now understand that even the most well meaning of words can be received in a manner you might not expect. I will always be mindful for the rest of my life that while I try to uplift and support others that I will too make sure I am supporting and validating their feelings. I think that is more important than anything else.
The next day Thursday was my 2nd chemo treatment, it is hard to express the level of dread you feel knowing that you are about to go do something that will make you sick, exhausted, nauseous and in pain for days. It takes an entirely whole new level of strength to remain polite, positive, and walk in there with resolve that not only are you going to endure the process but kick ass while doing so. I was dreading the access to my port as the last time was so painful, I was prescribed a numbing cream which I applied and hour before treatment as I was told. Unfortunately as I would later learn.. an hour was too long. The routine when you arrive at the cancer center includes: check in, lab for blood work and IV, go downstairs and wait to get called in, meet with the doctor who reviews your lab results, then you are brought too your chair. Once in your chair you are given premeds before the actual chemo.
I brought one of the sticker by number books which was great for the 1st half of treatment. My body seems to tolerate the “red devil” pretty well, but I struggle with the 2nd chemo drug. Almost as soon as infusion starts my sinuses/face start burning and I have a pounding headache. We had to stop infusion and slow it down twice so that I could tolerate it. This added about 90 minutes to my treatment all of which I spent with my eyes closed trying to tolerate the side effects. The only way I was able to cope after treatment was to go home and sleep for several hours. Treatment takes away my appetite but I have found I have to force myself to eat something small several times a day or I will become super nauseated. After being keto for three years and getting to my lowest weight in close to a decade prior to my diagnosis I never pictured bread, bagels, muffins, and crackers being my best friend! The days following treatment are weird to describe, I can say I definitely was better prepared to be proactive with taking preventative measures to counteract my side effects than last time. The day after treatment I felt exhausted, pounding headache, and queasy stomach, but due to the steroids that are given the day of treatment I am able to suck it up so to speak and function for a few hours of “normalcy”. The weekend felt like a month of torture, my brain was going crazy wanting to do things while my body couldn’t. The countless hours on the couch felt like an absolute eternity, because unfortunately I cannot always ignore the symptoms and have to allow my body rest.
Saturday was Tyler and i's wedding day and 12 year anniversary as well as day three following chemo which is the WORST symptom wise. A couple of months ago I would have never imagined spending my wedding day in bed sick mostly bald. It's almost laughable at how much your life can change in the blink of an eye. But we will have our day and honestly it will be that much better having went through this together.
It was Sunday night that my hair started falling out, most of the hairs were black seemingly burnt from the chemo drugs. I was covered in my own hair, my pillow on the couch was covered. The absolute hardest part was looking at myself with the bald patches, its kind of like you do not think a situation can get worse and then it does. The next morning I went to the cancer center for a scheduled “Tune up” which consists of fluids and nausea meds.
I was feeling pretty queasy but to be honest I am not sure if it was from chemo or my anxiety of having to go back to the cancer center. I have found that certain things are so traumatic that I am developing adverse reactions to things I associate with certain experiences. For example this may sound strange but every time I think about using my sticker book to pass the time I instantly start to feel the same symptoms I was feeling during treatment when I had my sticker book out. Mentally I cannot do anything the days following treatment that remind me or its like I start reliving the bad parts. I have had a really hard time even when I am feeling well not fixating on things like this. I wish I could explain it in a clearer manner but something’s just are what they are I guess.
Tuesday morning in the shower I was determined to get all of my hair out so that I was not patchy and awful looking. I kept rubbing my hands over my scalp each time my palms were literally covered in hair. I got 90% of the hair out before having to give up and get out of the shower due to nausea, I had to lay down. What is crazy is a few hours later I ran a few errands as if nothing was wrong. I am thankful to say that besides an awful daily throbbing head/neck ache that since Tuesday morning I have felt somewhat good. I was even able to go to the chiropractor twice this week as on top of chemo my back was cinching up so bad by morning from laying in bed that I would have to get up early as the pain of laying down was so bad.
On Thursday I had to go back to the cancer center for immunotherapy, it took longer than expected but was a much better experience than my last visit. My dad went with me so that Tyler could work and I was able to sit next to one of my new found breasties who just so happens to have the same diagnosis, treatment plan, and oncologist as me. I had my typical blood work done and was told that my white blood cell count was low but just high enough to go through with treatment for the day. I am hoping that I can pull through and not have to have any delays in treatment. I was go go go Thursday after my treatment but the small victories of feeling “normal” really mean the world.
I get asked all the time how I am feeling which is such a loaded question, because honestly I do not know what to say a lot of the time. If you see me in public smiling, laughing, and acting like I am fine, I bet you do not expect me to answer you honestly with the run down of how crappy I am currently feeling and ignoring. I have a new normal, so on the days when I feel good, most people would think they feel awful. My good day is most peoples BAD day. I have constant symptoms, but I am really good at plowing through and ignoring most of them. I feel like I owe it to myself to still take the time to live during the process instead of laying down and waiting for it to all be over.
One thing I am really struggling with is the stress of weight gain, my body is retaining fluids and the steroids when I am feeling good are making me hungry all the time. I am up a solid 6 pounds. I know I know, I have bigger things to worry about, I’m not fat, and blah blah blah. But please consider my perspective, I have spent the last three years of my life working so hard on myself. It has not been easy, the self restraint and tears, failures and victories just to have my life shattered unexpectedly in a matter of moments. The last thing I need is to gain the weight back I have fought so hard to loose on top of loosing my hair AND thinking about the impact of surgery on my body. So today as I sit here and type this… it is absolutely crazy but I am feeling guilty for eating what I have today. I am hoping I can get my feet underneath me so to speak and find a balance.
On Wednesday I am looking forward to picking up my new wig, Thursday is treatment 3 of 4 for AC treatments prior to starting my 12 weekly taxol treatments. It may not seem like it after reading but I am remaining so positive and thankful that I have felt as good as I have because I am well aware that it could be so much worse.
Keeping Faith,
Meg
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