Hi, Virtual World!!
I would like to start by apologizing for not being present lately. At the beginning of my cancer journey, my writing was so therapeutic. I felt like there was a plethora of information I wanted to share with the world. My oncologist asked me to be mindful of "why" I was really writing. Was it a distraction from the reality of my situation? Was I fulfilling a subconscious obligation to provide information to everyone? Was I trying to gain attention or sympathy? I spent and am still spending a lot of time asking myself these questions to ensure that my intent remains in the right place. It is so easy to get caught up in all the positive responses and be driven to continue the momentum. I am a sucker for praise and it genuinely makes me happy to help others. I have to remind myself that my writing should benefit myself first and help others as a secondary. My lack of motivation to write is because I feel like I am forcing myself to do so. The rush of the holiday season and trying to function at pre-cancer standards, has really taken a lot out of me. Part of me feels like I should be performing at normal speed. The other part of me is listening to what my body feels at the end of these "normal" days. Is it me not being mentally prepared to have my life back or am I really still trying to get back up to speed? It's peculiar to say this now, but I felt more normal throughout chemo. I felt like I had less weight on my shoulders during those 6 months. How can I say "I BEAT CANCER" when my body and mind feel more sluggish than when cancer was visiting? Of course I am thrilled that there is not residual cancer in my body, but I'm ready to FEEL like it never happened in the first place.
As I approach my first revision surgery, I reflect on my recovery post reconstruction/double mastectomy. I have since started physical therapy at MD Anderson to help gain my normal range of motion back. The regimen is primarily stretches against a wall and massaging my incision areas, as that is where the more dense scar tissue exists. For those of you that may not have medical coverage for physical therapy, let me share a photo of the stretches I am doing. They are totally something you can do in the comfort of your home or really wherever there is a wall. Also this applies to anyone with scar tissue in the abdominal or under arm area. The first one is basically like you humping a wall for a lack of better words. Since I have no real feeling in the area from the surgery, I have to ask the kids if my belly is touching the wall. You should feel the stretch in your abdominal area. For the second photo, I hold a Swiffer or wrapping paper roll. You want to let gravity allow your body to lean side to side and do not bounce. The purpose is to stretch your sides gently. The notes at the bottom are exercises to regain strength. You stand far enough away from the wall that you can straighten out your elbow and still hold a small towel or pillow case against the wall. From there, you will make a big rainbow shape as far as you can go comfortably. Another option is to spell giant names or words instead. The goal is to feel the stretch on your sides and also strengthen the muscles around your shoulder blade.
Feeling the imperfections is a reminder of how my body has not just changed for me, but it's changed for what my husband physically feels
Now the true test for me with physical therapy is the REQUIREMENT of touching my incisions. As I mentioned in my previous post, I have been petrified of ruining my surgeon's work and ultimately limiting my options for reconstruction. While I'm bathing myself, I use a sponge so I don't feel the incisions. I feel like I adequately prepared myself to LOOK at my body after surgery, but I didn't even think about preparing myself to TOUCH those areas. When I run my fingers across my abdominal incision, I can feel some areas of my skin being raised. As I apply more pressure, I feel extremely dense scar tissue. It was so dense and tight before I started physical therapy, that it would hurt when I coughed or sneezed. Things like squeezing behind someone's chair at a restaurant make me feel uncomfortable. If my abdomen grazes the chair, I have hypersensitivity in the area. It feels similar to the pins and needles feeling when your foot falls asleep. My physical therapist asks that I deeply massage my incision areas to help soften the scar tissue. Aside from giving me the heebie jeebies, this activity forces me to feel the imperfections on my body. Some areas feel like there is a pea underneath my skin which come to find out is the most difficult scar tissue to breakdown. Feeling the imperfections is a reminder of how my body has not just changed for me, but it's changed for what my husband physically feels. He has reassured me a million times that I'm still just as beautiful as I was before, but I can't get the insecurities out of my mind at the moment. I need to keep focusing on what I do have control of, the future.
I haven't taken many photos of my incisions, but I do have a few to share with you.
keep focusing on what I do have control of
Pictured Below is 9.5 weeks post surgery. The first photo is just my lower abdominal incision, the second is the scar left over from where the drain was hanging, and the last photo is the vertical incisions from my double mastectomy. What isn't featured is the photo of my reconstructed nipple. That thing looks peculiar, but hey we said we would try to make things look as "normal" as possible. In these photos, I am using a Silogen silicone band across my abdominal scar. It is supposed to lessen the appearance of scars with consistent use, but my doctor says it's mainly genetics so I should probably save my money. Also, it requires 24 hour wear for several weeks. Historically, anything elective that requires consistency, I have admittedly not followed through on. I assuming this is because it's not something that's ordered by the doctor which means my brain doesn't store it as pertinent information.
I joked about what these scars look like especially during the holidays. I felt like my body looked like the Grinch. The scar across my lower stomach naturally creates a side muffin top which resembles the Grinch's mouth and cheek shape. My nipples would be the eyes and my belly button the nose. I also see a smiley face when I look in the mirror as well. The vertical incisions on my breasts are the lines for the eyes, my belly button is the nose, and the stomach scar is the smile. Using my imagination and making light of my body definitely helps with the mental acceptance of it all. I'm optimistic that with time and the power of plastic surgery, I can begin to feel comfortable in my skin again. The first step is to drop some of this chemo weight. In my mind, fitting back into my pre-cancer clothes will be a huge step in feeling like myself again.
I also have some physical limitations that are affecting my ability to sleep well. I still haven't been able to sleep on my side or stomach since September. This is me likely being overly cautious about messing up the reconstruction work thus far. I want to be sure there are substantial new blood vessels in my "breasts" before I apply significant pressure on them for extended periods of time. I do rest on my side for very brief moments to enjoy the feeling and I also sandwich myself in between 2 king sized pillows to give me a place to kind of lean on when I sleep, These things help satisfy my body's desire to side sleep. However, the most annoying part of this is that I'm unable to sleep all the way through the night. I wake up every few hours. Long continuous sleep hasn't happened since before my diagnosis. I used to be a proud 8-10 hour sleeper with 2 kids. I always found sleeping that long to be pretty impressive considering I still have young children.
So enough about the physical effects of this whole ordeal. Let's talk about how I'm feeling mentally. More recently, I have spent some time thinking about how this has changed me. Is my outlook on life significantly different? Am I more positively driven or do I think of the negative side initially? How is my patience? I feel like I don't want to lose myself during this journey. I have always been pretty optimistic in life, but I find myself having morbid thoughts. I can't really ever omit the possibility of cancer paying me a visit again despite what the statistics stay. I feel like if I don't verbalize that cancer could possibly return, I will end up extremely disappointed and more upset if it ever did. Obviously, my hope is that I will never have to battle anything like this again, but I'm hesitant to give up my chemo survival items. I looked through my closet to purge and attempt to Marie Kondo my home. I came across the shirts my sister in law's mother helped sew zippers on for me to have easier port access during infusions. I loved how convenient they were and I don't want to go through the trouble of having them made again should it be necessary. I have a whole basket of head wraps that protected my bald head from the sun and reduced the number of stares I received in any given day. Needless to say, these items remain in my closet for the "just in case." Can you imagine having things in your home for "just in case you get cancer again?" It sounds ridiculous, but having gone through it once you cannot get the idea that it could possibly happen again out.
Progress with my physical therapy has been encouraging. I think having someone hold me accountable and tell me my progress helps me cope with these long term effects of the surgery. Going back to a normal work schedule and a relatively normal work load has also helped me feel like I am getting back to life as it was pre-cancer. I don't miss how hectic the job could be at times, but I'm grateful to be able to utilize my brain in that way again. I need to research a bit more on what mental exercises I can do to improve focus and concentration. I have noticed a significant lack of short term memory. I literally forget why I called a person the moment they pick up the phone. Thankfully, this hasn't happened at work yet since I usually have an email or notes reminding me of the purpose. With the struggles of my short term memory comes the balance in my long term memory.
Paths do not need to constantly cross to maintain a connection
There have big triggers around me that force me to reminisce about life before cancer. Social media being the worst of the triggers. Past memories continually show up. These are photos of me with long hair, skinny, just living my best life with people that aren't even around anymore. It's a reminder that some people took the back seat to deal with my illness. Some people I haven't seen in years took the front seat and used this as a chance to be present. Maybe the fear of the unknown draws people in different directions. Some may be scared of the possibility of death and choose to stay away to avoid the pain associated with it. Others are also scared of death, but don't want to live in regret not taking advantage of time still available. I have always valued my friendships, both of close friends and ones that have drifted off into the hustle and bustle of their own lives. Paths do not need to constantly cross to maintain a connection. That I feel is the most important thing to preserve. Preserve the connection to those you care about. A simple "Hey, I was just thinking of you. I hope you're doing well," or sending them birthday/holiday greetings. You would be surprised how reminding someone of a fond memory that includes them makes them feel. People are so focused on everything else, that a second of nostalgia or a positive memory, helps break up the monotony of adulthood. To clarify, I don't have hard feelings towards my friends that decided to take the back seat. I understand that it may be easier for you to do so. I am extremely grateful to those that came forward and stepped out of their comfort zone to be present. It takes A LOT for anyone to go from not seeing someone for years (in these cases over a decade) to making an effort to meet or chat. The effort is another blessing from cancer. See!! I started this paragraph thinking of the negatives from the triggers and it led me to a positive message. For real though, I do wish I were skinny again. Lol. I think that really pisses me off the most. I want the stamina to be more active and the drive to say "NO" to delicious food. I'm hoping my mom helping and cooking for me during recovery will force me to eat better. Nothing beats mama's cooking!
This is a sign of progress
Thank you all for spending some time with me here. Sorry if this post seems scattered. It has taken me a few tries to get it written. My engagement in the blog has been bittersweet. I know that you all want to be updated and that you genuinely care about what is going on, but at the same token I don't have as much relevant content to write endlessly about. I need to remind my readers and myself that this is a part of the healing. This is a sign of progress. My NEED to write to channel my stress and negative energy is significantly low. I don't have very many worries in my life at the moment. Even as I am sitting here hungry from fasting, and awaiting to start my day so I can get to the hospital for surgery, I have no feelings of anxiousness or worry for that matter. I guess I'm used to the idea that I'm going to be put to sleep and then I'll wake up and deal with whatever the recovery will be. It's a process that I have chosen to embrace as it is out of my control. My goal is to "feel" like pre-cancer Christie since I know that my body will never look like her again. I have to leave it up to the hands of my trusty plastic surgeon to make me feel whole on the outside again. See you all sometime in the near future and wish me luck on my surgery!
P.S. Here are some pictures since the last time I posted. Enjoy!
