MBC is always progressing. Whether it be slow or fast, always forward this monster claws. Mine, once again has grown. For the past little while I have experienced pain in a few areas of my skull ( bruise like feeling),pressure, headaches, fatigue and nausea. So scans have revealed mets to the skull and liver.
Please don’t tell me to stay positive, I promise you I am being as positive as I can be!! Please do not tell me “I got this!” or “Everything will be OK!” Everything is not going to be OK. I feel the need to remind everyone, the end game of this disease is death. It has no cure. The only hope is to slow it’s growth.
My doc, the amazing Dr. Chang, has never been able to give a time frame even after years of me (annoyingly lol) constantly asking how much time I may have left. This changed last week and because I feel like I know him and a little on how his brain works, it scares the hell out of me. My life has basically been calculated to about 2 years. He has worked so hard to try and slow this cancer down. He is so smart and has so much knowledge. I think it has frustrated him that my cancer has eluded his plans of attack.
So I have vowed, once again, to fight fight fight for my life and plan on proving those stupid STAT’s wrong!
The plan for next week: a new chemotherapy called Xeloda and a biphosphonate injection Zometa. An MRI for the liver will also be done to check out the extent of the liver tumors.
Progression is not great news but it has been expected, sadly 😦 BUT, I am feeling pretty positive and surprisingly mind strong.
I have been struggling a lot lately. I have felt in limbo. Stuck, scared, stagnant…The past 3 years pressing down on me with unrelenting dominance and the future’s haunting unpredictability gnawing on my soul. Needing progress for answers but progress means closer to death. Quality over quantity. I get it, I really do, but I am frustrated!!!! I am tired! I am exhausted from trying to be stronger than I am! Feeling like shit from one degree to another on a daily basis. Nonstop life taxing treatments. Feeling buried under all the bullshit pink ribbons, feeling like my disease is ignored! De Novo at the age of 38. Angry that there is NO ESCAPE, except death, to fighting this disease everyday. Pissed off I lost my breast. Honestly, I wonder what the point is a lot of the time, fighting for life just for it to end!? This does not make sense in my brain! My children having too much knowledge about cancer for their ages and carrying around the burden of their sick mother. My husband having to deal with it all!! My sisters, family and friends…
Yeah yeah, we could all die tomorrow but here is the deal, I know how I am going to die! My death has hit me in the face and keeps backing up and charging forward again and again. It firmly reminds me everyday that I have no control and what will be will be.
I am going to be honest and admit to you all that I have been battling depression for the past while. I tried to ignore it. But it can not be ignored. I felt weak, weak that I was letting my disease take over. I hated how I felt. I had anxiety like crazy or the simplest things. I didn’t want to do anything and my anxiety would not let me. I was trapped and all I wanted to do was sleep and hide away from everything. I tried to hide it from my kids and husband, family and friends. Embarrassed by the fact that I was depressed. I did not want to admit it and I was terrified to say it out loud! But when I finally did, I cried and a tidal wave of emotion swept through my body and soul. That was the moment depression began to release it’s hold over me. Slowly I have started to feel better. Medication, of course was prescribed. But more than that I started to try and do things. A little yard work, grocery shopping on my own, a yoga session or 2. I started using my Valor essential oil again to help calm my mood and inspire me.
I am writing this post to let others know, it is OK. Don’t feel weak or defeated because you may have depression. Depression is serious and debilitating in so many ways. If you think you may be suffering, please please ask for help. I should not have denied and fought so long. I have missed out on living. You are not alone and help is here!! Talk with your doctor. Open up with communication and keep talking. Don’t let this rule your life any longer and begin living again! You are strong enough and you are loved!
So what do we do?
Wake up day after day and bravely “take on” living with cancer.
Second verse, different from the first! Another post to help those who are going through a mastectomy but this one is more focused on what your mind might be going through and a couple of tips. This is just my experience and everyone is different.
My surgery was unexpected, as I said in my Bye Bye Boobie post, I was always told it was too late for surgery so in my mind a mastectomy was never in my future. As always with this disease, it is wise to always keep your mind open because anything can happen. It is so unpredictable and always ongoing and growing. Remember nothing works forever but also remember to enjoy the “pauses”! As the disease progresses treatments get harder and harder. I think that was a part of my sadness with this surgery, new treatment because of progression. Every time this happens I am reminded at how little control I have and my mortality is put in check.
Psychologically this is a hard surgery, no one looks forward to losing a breast and I found that the time before surgery was the hardest, I thank God that I only had a week to think about it. Honestly, it was a very long week. I also highly recommend you stay away from googling pictures, trust me from experience. Two days before my surgery I was trying to find pics of women that had their surgeons manipulate “fake” cleavage from breast tissue but was only horrified and scared to death of what I was going to look like. I swear they only post the most distressful pics out there!! DO NOT look to the internet pics for reassurance!! Try not to think about what will happen or what it will look like after, it will just add unneeded stress to your recovery! The reality is you are losing a breast and your chest will look different, accept it and it will make the before and after easier. Focus mostly on your health, there is a reason for this removal, it will bring you life! My biggest advice, be brave and stay strong, you will get through it!
As I said before the waiting is the hardest. In my opinion do whatever makes you feel better, fuck it, this is hard, so hard. Get a pedicure before you go in, go out for a great dinner with friends and anything else that brings you happiness. My wonderful friends helped me get a boudoir photo shoot. This was so amazing and I highly recommend it. It was such a great way to have some beautiful photos taken before your body changes. I decided to go tits out and give my husband some shots to remember my awesome boobs! I also decided after 3 years of fighting this bitch, to take the time to relax and recover at my own pace! No guilt just recover in peace!!
Getting out and about was a problem I didn’t think about beforehand. I couldn’t drive, I have a manual car and my mastectomy happened to be on my gear shift side. This was a big challenge for me, not being able to even leave the house if I wanted to, at the mercy of others but not wanting to bother anyone to take me anywhere, I already feel like a giant burden and I didn’t want to be a bigger one. I did feel a little isolated and lonely but sadly that already comes with the disease.
I also found it was difficult to look at my chest, avoiding a direct long look, not wanting to see it but slowly trying to accept the unavoidable reality. I would take quick peeks every now and then, and still every time I was surprised by what I saw, that’s not me is it, FUCK! When I put my hand to my chest, so familiar it used to feel. As it went closer and closer with anxious curiosity, expecting to feel my breast, it hesitated as the unfamiliar empty space was entered. This empty space… it means again cancer is winning, for now! it means I feel less than a woman, again! it means forever I will have this emptiness.
So because I only had one boob removed, my remaining boob still needs a bra… I left the house on a couple of occasions feeling awkward. I did not buy anything to wear post surgical because I really was not able to think about the after and partly because I didn’t know what the hell to buy. My surgical site was so tender and I couldn’t wear anything I had at home so off into the world au naturel it was! My one side obviously empty and the other boob flapping in the wind. I felt obvious and vulnerable, again cancer announcing to the world, this body is my bitch! Now here is where planning ahead would have really come in handy. There is a website for knitted knockers! It takes a little while to get them so I suggest ordering before you go in for surgery. These things are amazing and free!!!! Check out the website for these awesome confidence building boobies!!! http://www.knittedknockerscanada.com/
It has been 3 weeks now and my physical healing is going great! My mental one is still in the works but it is a lot easier to accept now than it was, like anything in life change needs time and time heals! I bought a bra and have stuffed it with socks lol! I am still waiting for my knitted knocker. I have also looked into prosthesis. I have heard they can be uncomfortable to wear and are quite expensive but do whatever you need to do to feel better! Ontario does have a grant for a chunk of the cost if you are interested here is the link https://www.ontario.ca/page/breast-prostheses-and-artificial-limbs
I am irritated about future clothes shopping! Trying to figure out how to camouflage my cockeyed chest for the rest of my life. I have already had a lifetime of trying to conceal my fat and now I have to fabricate the illusion of “normal” breasts!
I wonder if my golf swing will improve! 😉
Today I will own it! Battle wounds and battle scars, we all have them let us not give them the power to define us or rule our lives! Whatever life throws at us remember just carry on my soul sisters and brothers we are alive to fight for another day!!!
I decided to split my mastectomy posts into two. This one is focusing on the mastectomy without the emotional of psychological stuff. Also I have included some pics post op, so beware if your squeamish although I think I look great and they are not gross or anything.
In my opinion I would say all in all the experience was not that bad. Pain was really bad on the bad days but mostly I felt really good. I really did not get much after care instructions or any lead on what to buy or expect, I have basically figured it all out on my own. As with any advice, please check with your doc ok 😉
I wont get into details about my horrible hospital stay, I was disgusted and really disappointed in the “care” I was given, but here are my recommendations to help make your hospital stay it’s best: Lipbalm, COMFY COMFY COMFY pants you are able to pull up with one hand (my best friends were a size too big for me track pants, they were the best, I had 2 pairs) or a nightie you can step into, stretchy tank top (loved the tanks, another bestie) or zip up sweaters but the hospital gown and pj pants are just fine too while you are there, wet wipes to help you feel fresher (no shower), an airplane pillow or mastectomy heart pillow to help prop your arm (I found my underarm was too tender for these but most other people find it useful) but a really well placed pillow works great, your favorite blanket that brings you coziness, step in slippers or flip flops. Oh yeah, my throat hurt badly so maybe some throat lozenges or spray to help with that.
Watch the seat belt on your way home, oh and you prob wont be able to close the car door depending on what side your mastectomy was on.
At Home: you will need lots of pillows to prop you up, baby wipes to help keep you fresh (yes, still no shower babe!), lipbalm, dry shampoo, airplane pillow helps with keeping your neck comfortable as you can’t sleep in any position except for on your back propped up! It has been 3 weeks and I still have trouble on both sides. Be prepared to feel gravity when you stand up, I was not expecting that, especially since there is no boob there, I still don’t get it but it feels weird nonetheless.
One week out of surgery and I had not yet worn a bra, the area was still so tender but I plan on wearing a front closure non underwire.
During my recovery I did daily movements and stretches to help keep my arm from seizing and my muscles getting too tight.
After a mastectomy a drain (sometimes more than 1) will be put in place. I found this somewhat annoying but it really helps getting all the blood and gunk out and is important for the healing process. Some women buy a post surgical mastectomy camisole/bra to wear after, these have little pockets to hold your drains, this I defo recommend for anyone with 2 or more drains. Don’t be alarmed if you see clots or tissue of sorts in your drain bulb, it is totally normal! Learn to “milk” your drain. You will have to empty and measure your drain for about a week, so easy but very important as your measurements will determine when the drain(s) can be removed. This is most important because when the drain is removed, you can finally SHOWER!!!! One of the best showers of my life, just sayin’!
When my drain finally was removed it felt so much easier to move and much more comfortable also, I felt so free! The removal was wicked painful, I suggest taking your meds before you go, I did not and ended up crying like a baby and muttering profanities between taking my deep breaths lol
I will be honest, this surgery hurt like a bitch! But we all do what we have to because there is no choice, the pain is there so just take a deep breath and go with it.
A description of my breast before surgery: there was a dent on the side and my nipple used to be pulled to one side and because of the tumor growth it had been pulled right in so the nipple had basically disappeared. (I forgot to take a pic, too late now lol)
So here are a couple of pics after my surgery. I still have quite a bit of swelling but all in all my healing is going well.
So there we go, my mastectomy in a nut shell. I hope I was able to ease anyone’s fears and wish well to all my brave ladies out there who will end up having this surgery. The mental part of this will be in a post that follows.
Next week I will have a mastectomy.
From the beginning of all this I have been told that surgery was not an option. Not an option because it was too late. Mastectomies are usually used to stop the cancer from spreading aka metastasize. I was not ready to hear this as an option and it has come out of nowhere! In the beginning, I would have gladly given up any part of my body if it meant I could beat this beast, but my mind is not in that place anymore and I am sad. I have struggled to come to terms with this surgery.
As I stare at the boob that betrayed me with it’s ever expanding tumor, dent and disappearing nipple, I tried to imagine what my chest will look like without it. I wont lie, I am terrified. Having my boobs has always brought me some sort of comfort with this disease. Cancer has already, and continues, to take so much and now I can add my breast to the list. I am gutted and shocked at this plan. I have cried, mourned the breast that I will lose. I was also told reconstruction was not an option for me, it will cause too many complications. So for the rest of my life I will be a lopsided scarred mess!
but, as of today, I am ready. Ready for the surgery and ready for the recovery. I have done research and found great comfort in finding out this may bring years to my life! This surgery may be able to finally let us get some control over this nasty cancer. Also, I am getting a much needed break from chemo! Ahhhhh… a month or so without taxol, I am most excited about this lol!
So there are a few positives and I will focus on those instead of the negatives! As for what is to become of my body, I will put it out of my mind for now and take one step at a time! Staying strong and positive until the bandages come off!
With this diagnosis, thoughts and ideas have grown in importance and my desire “to do” has increased as well. Remember my bucket list post? Well, for quite sometime I thought about flying a plane, why not!!! My uncle Donnie has his licence and we had talked about it one day last summer in his backyard. He is such a wonderful generous man, so to support my endeavor he gave me all the books and supplies I required, as he did not need them anymore. Time has gone on and between much chemo, not feeling well and having no energy, my flight plans were put on hold. Until one serendipitous night! My sister Tina attended Erica’s b-day party and beside having her ass kicked repeatedly by Donnie playing pool, they talked and they were both disappointed that I had not been able to get out there to the skies. Donnie being Donnie (the dream maker 😉 ) they formulated a plan to get me up there. So 4 days later, a big surprise for Krista!!, we were booked! Well today, March 29th, 2017, I flew a plane! And it was amazing!!!
Our pilot, Matt Hobbs was so great. So friendly and supportive. This guy was really awesome! He is only 25 and has been flying for 10 years! He travels all over the world, he just came back from Tanzania! He does not do much teaching anymore but he took the time to be with us. Time I am very grateful for. I just wanted to mention, his landing was so smooth, we didn’t even feel it at all! I am pretty sure landing is the most difficult part of flying a plane and he just did it with such ease and impressed the hell out of us. He is a really great pilot and such a gentleman, he gave me the pilot seat! Yup, I sat in the power seat, the plane was mine! lol
I was lucky to be able to share this experience with my sister and my son Ethan. Ethan was as excited as teenagers get and all he said was “your not going to crash us are you?!” Oh teenager, one day… My sister and I were giddy and yup, powder-puffs we are, shed a tear or two thinking about how amazing this was! I basically flew the plane the whole time and besides going a little too high ( 5000 ft lol) and being a little tentative on my banking here and there, I took control and flew that plane through clouds and sky!! I loved every second and have had a smile on my face for days!
I need to give the biggest thanks to Donnie of course but also Martin Proulx, Director of Maintenance from Enterprise Air Oshawa! He set up the entire trip and would not take any payment! Thank you so much!! You made a dream come true today and the appreciation we have can not be measured. Truly a flight of a lifetime!!
As a cancer patient there is a tradition when you finish your treatment, you ring a bell. Signifying the end of chemo and your new life “cancer free”! I have a few thoughts on this subject.
This tradition can be extremely emotional. With the end of treatment, it is a bittersweet moment. I know that can sound weird but it really is. After you are diagnosed with cancer, you are bombarded with endless doctor appointment’s, scans, blood work, surgery, oncology, radiation, chemotherapy and the list goes on. As you go through the toughest time of your life, your family, friends and support team are there for you every step of the way and drop off food, cards and visits. Your world is upside down and you have never felt so sick or scared maybe a little lost.
As the treatment ends so does the hustle and bustle. And with that last treatment comes the bell. As you pick it up, a rush of emotions comes over you. Happiness, a little peace but also fear and sadness and yes the lost feeling again. Now you are CANCER FREE, so just continue your life as you left it before the diagnosis. The fact is it is one one the most difficult things to do. Also, the fear of cancer recurrence can be terrifying and is a very real possibility for most. I understand what they have gone through and my hope is that they know, some of us understand and get it. Keep fighting and live as much as you can! Do not let the fear run your life, you did not go through all of that shit just to crumple and let cancer win! You are more than that and deserve happiness. You have walked the line between life and death and have come out the other side, embrace this gift! Never waste it!
On another note, that stupid bell!!I remember when I did my first chemo, sitting in the suite and hearing the bell from time to time. I was truly happy for them clapped and cheered as loud as I could! But, I was also sad and jealous, I thought, I will never ring that stupid bell! My treatments will never end! Stupid fucking bell, stupid cancer! I mentioned this to my nurse one day. I told her I was sad about never having the chance to beat cancer and ring that bell! She said, “Well you will ring that bell! Just because you are not cancer free does not mean you can’t ring it!” So at the last appointment came and finished, I walked up to the counter and picked up this “bell”. This bell that held such promise and hope, the sound of the end of chemo (for now, at the time, for me) I thought I would pick that bell up and ring the shit out of it, run around a little ringing this bell as hard as I could, I may never get this chance again! BUT, as I picked it up, I felt small and humbled and it felt big, it was so strange. I felt respect for all who had rung it before me and could feel it’s power. I cried when I rang it. It was a special moment!
After however lol One of the nurses gave a “typical” “standard” little package for finishing chemo. Pamphlets and books all under the topic of “Life after cancer”& “Next steps in your cancer free life”. I was immediately offended and bothered by this delivery. What the fuck! I said “well you can keep this package, I have no use for it, thanks! My cancer is not curable”. I didn’t want to sound rude or ungrateful but I could not control myself. In my head I said, “If you took the time to read my file or treatment page right in front of your face, you would know that, bitch!” She looked at me a little embarrassed and said, “Well there are a lot of good tips in these and it can still be really useful to you.” Let the record show lol, I have never once used anything in that package to this day! It really wasn’t her fault, she just knew it was my last chemo, I do not hold it against her in any way, she was really nice. But damn, I was pissed. And it ruined my moment, oh well!
As I started this new chemo in September, and learned that I would be receiving it until it stops working just to hopefully move on to another, I thought about that bell. And as I hear it from time to time as I get my weekly treatments, I wonder if I will ring that bell again.