I hate these nights where I can’t sleep. I still fall asleep most nights but cannot seem to get up in the morning. It’s been awful. I’m getting up at 1 or 2 in the afternoon and even then it’s a struggle to get out of bed. Chemo is over so it’s not that. Maybe it’s all the codeine I’m taking along with other drugs that can cause drowsiness. Then (like tonight) I’m wide awake at 3am. Really WTF?! Will see if I can get up after 8 hours tomorrow …
The other annoying thing that’s been happening is these hot flashes I’m having. I’m guessing it’s early menopause thanks to chemotherapy. Have lots of tampons that I haven’t been using for the last couple of months so even though I’m 42 and look 32, I’m starting to feel like I’m 52!! Let’s not forget about the pain and soreness post surgery. I can do most things myself but there is pain when I do certain things and I can’t lift anything too heavy with my left arm. A lot of things are still a struggle (like bathing) as my reach is a little limited and even getting dressed is a little painful. Simple things are no longer simple. Let’s be real I feel like I’m 80 right now. Hopefully in another month or so I’ll feel closer to my 40s again.
The scar still has staples, which should be taken out this Friday. I still have those annoying drains which should also both be out in a few days (I hope!!). There’s still recovery from the surgery and radiation to go. After that there will be more surgery for reconstruction but I will decide when I want to do that. I had a friend ask me if I wanted to go for a drink this weekend. He’s actually more of an acquaintance and he has no idea what’s been going on with me. He won’t be seeing me anytime soon. It made me realize that I really wouldn’t even be ready to date for awhile. All of this is emotionally draining and as much as I want my normal life back, until I’m not so sensitive and emotional it may be best to put that on pause.
I need a break from everything, time to rejuvenate. Wish I didn’t have to be around any babies, be out of my parents house and definitely no men. Just temporarily, some time where there is nothing to bring about any negative feelings for me. Things won’t be on pause forever but I need some time to deal with everything. If I could have a few months of that I think I would come back feeling so much better. I wonder if there’s a way for me to do that hmmm. Maybe go away for a couple of months.
I realized that my first few posts were short and had a somewhat upbeat vibe. My recent posts have been very long and some where I’m very sad. I guess somewhere between month 1 and month 5, the emotional exhaustion set in. The physical exhaustion didn’t help. They go hand in hand. 18 weeks of chemo! Ugh thank god that’s over!!
Now It is post-op day 4 and I’m not as traumatized looking at myself in the mirror. I think I got everything out of the way the day after surgery when I cried and cried and cried. Now it’s time to recover so I started doing my exercises yesterday and I also did laundry today! Yaayyyy!! On the flip side I just leaned on my left elbow to push myself up and wanted to scream! I forgot that I can’t put any pressure on that arm. Funny how something small can become something big. It’s all relative and puts things into perspective.
The other thing about perspective is you see what’s important and what isn’t. In these situations you also see who cares and who doesn’t. Over the weekend right after surgery my cousins came from out of town to see me. That was very sweet of them and very much appreciated. I also have the few friends that called/texted to see how things went and they will come see me soon. Then I have the friends who I thought were my close friends but haven’t even bothered to come see me at all and barely call. I have no time for those people. What’s important to me is sharing my time with the people who are truly my friends, who will be there for me in these critical situations. Everyone’s life is busy but if someone is going to call themselves my friend then they need to be around for the good and the bad, otherwise they are not real friends and they need to be bumped down to acquaintance level. What really put things into perspective was thinking about my mothers friends who have made more of an effort than some of my own friends. What an eye opener that was!
I started chemo very soon after being diagnosed so I barely had time to process what was happening. Of course once the chemo started I was dealing with the physical side effects while still trying to deal with things emotionally. During that time I was also listing my condo and bringing whatever I needed over to my parents place. I didn’t have time to think about everything that having breast cancer meant for me. I could only handle one thing at a time. So I focused on what had to be done at that time and only thought as far as my next chemo cycle. Thinking beyond that was overwhelming, especially when I thought about surgery. So it had to be one day at a time.
All of a sudden it was December and the day after surgery! I was feeling a sense of relief but was so emotionally worn down. I was irritable, super sensitive, super emotional, exhausted and sick (had a cold). Anything and everything could have pushed me over the edge. My parents I’m sure were also emotional, tired, and have been stressed with everything I’m going through and having to see me go through it on a daily basis. So 2 days ago when I had my meltdown, being irritated with something my parents said was just the straw that broke the camels back and once I started feeling upset everything came flooding out. All the emotions that I had been pushing aside to deal with later all came out. It was so painful. Having breast cancer, losing the chance to have my own children, and losing my breast … All of it suddenly just hit me like a brick wall. My mother came in and hugged me and tried to comfort me as I cried uncontrollably for what felt like forever. As difficult as it’s been to lose my independence and move in with my parents I cannot imagine being alone during this time and I am so thankful I have my mother to take care of me. Being alone while dealing with this, I would not be properly taking care of myself. Also too much alone time gives your brain too much time to think and go to negative places, at least that’s what would happen to me.
It’s difficult to explain to someone who hasn’t been through it but this is how it feels … well for me. It’s like I’m using all of my emotional energy to deal with what’s happening so anything more than that can just make me cry because I have very little to no emotional energy left. I can start to cry over something that’s really nothing but in that moment it just happens. Sometimes I start crying and I’m not even completely clear as to why. At times during chemo I was so frustrated and irritable because I had no energy, felt horrible and my normal life was taken away. SIGH.
I just want this to be over. I want to be normal again. I want to be independent again. This has been rough BUT I’m sure once this is done and I’m not overwhelmed just trying to deal with everything, I will be stronger. I’m just totally worn out right now. My brain can’t even focus half the time. That ‘chemo brain’ as one of the nurses put it, is a bitch. I can’t think straight and there are whole conversations I’ve had recently that I can’t remember. Things are sometimes a blur, and thinking a lot is mentally exhausting. Sometimes during chemo on the bad days, even talking took so much effort. Ugh, I hope all that slowly gets back to normal … Chemotherapy is hell! It’s poison trying to kill the cancer. The last few months have been a blur, especially once I was on the taxotere from oct to end of nov. I still feel like it’s October, but it’s almost Christmas and 2013 is almost over. When did this happen??? Oh yeah, it was while I was in bed in pain or on the couch with extreme fatigue, or working up the energy to go somewhere or just resting and eating trying to feel better and prepare myself for the next chemo treatment.
Having trouble sleeping with these drains coming out of my left underarm. This sucks. BUT I am thankful that I made it through chemo, my surgery and 2013! I did that with the help of my mother, the rest of my family (immediate and extended) and the friends that have been there for me. Sorry if I was bitchy at times. It was the drugs and the hell I was going through. Love you!!
I just had surgery yesterday morning. Left breast mastectomy and axillary nodes removed. I’m sore but can still move my arm pretty well. The emotional part seems to be harder than the physical. I’m worn down from months of chemo, moving in with my parents, having been in a stressful relationship which ended the month before being diagnosed and realizing that I will never have my own children. Oh and also just dealing with having breast cancer and wondering what the future holds.
Looking at myself in the mirror was hard today. Just seeing part of me that I had for so long cut off. I know it had to be done but the reality is sinking in now. I am relieved that the surgery is over but now just dealing with the loss of my left breast and trying to recover. I feel like an alien with no hair, sparse eyebrows, very little eyelashes and one boob.
I am also exhausted because being in my parents home it’s difficult to sleep. They wake up and talk in their normal voice which is not quiet. I’m a light sleeper and wake up and then cannot go back to sleep because all I hear is noise downstairs. I was so frustrated and overwhelmed that I had a meltdown today. Then I started getting hives on my face. I don’t know how to deal with everything that’s happening. I feel like I’m swimming in the ocean, trying to get to the shore but the waves keep pulling me back out to sea. I’m swimming against the tide and the more I swim the more tired I become. I don’t know what to do anymore … Someone else wrote on their blog that breast cancer is not all pink and fluffy, it feels like everything just turned black. That’s exactly how I feel. I may have started off a little pink and fluffy but then when reality set in and I had processed things it really did feel like I was swimming in the black ocean unable to see the shore.
It’s difficult to see people all happy with their children, especially young children, knowing that I will never have that. (Not my own anyways). I’m trying really hard to just be grateful that I’m alive and to just be happy to stay alive but when people talk about their kids and are showing you endless pictures, it’s very difficult to know that you will never have that. I thought I had accepted it and thought I was ok with it. Today I realized that I’m not. I wish I was one of those people that didn’t want children. Instead that’s all I’ve wanted for the last few years, making this all the more difficult. Well such is life UNFAIR but you play the hand you’re dealt.
So I’ve been thrown into the black ocean and I’m not sure how to get to shore … I’m a little closer than I was before but today a huge wave came and pulled me under. I came back up eventually but felt like I was drowning for a minute. I’ll start swimming again but I’m tired. At times I feel like I can’t swim anymore. I need a raft, a small something, anything that’s floating so that I can find some reprieve.
I need sleep. That will make things a lot better. Lack of sleep day after surgery is very bad. Lack of sleep at any time is bad. Going to try earplugs. Fingers crossed.
Once again I cannot sleep but on the bright side it doesn’t happen as much as it used to. Today was just an anxiety filled day. Had an MRI a few hours ago. Yes it was a late 10pm appt because I rescheduled and couldn’t wait too long to have it done. Anyhow the reason for my anxiety being the allergic reaction to the contrast dye that I had the last time. Looking almost like Will Smith in Hitch when the MRI was done. Ok not quite as lopsided but hives from head to waist. Burning and itching like crazy! It was not fun. Because of that I had drugs to take all day to try to prevent another reaction and they actually used the other contrast dye this time. All went well and I had no reaction. Whew! Thank God!!
The guy was super nice which helped. He also told me the other contrast dye was very expensive and statistically has less reactions. So then why do they not use it?! Oh wait because it’s very expensive and that’s more important. UGH!!!
I had to take 3 different drugs today along with the regular drug I take every morning. Because of that I thought I won’t take the adivan which helps me relax and sleep at night. I felt sleepy when I came home but I think I missed that window. I ate a Haagen Dazs ice cream bar right before bed. My tongue is still burning so I usually have a couple of Popsicles a day. Also, my mother wasn’t and still isn’t feeling well and it was concerning, so by the time I went to bed my mind was racing. I spoke to her right before sleeping so I went to bed worrying. Finally took the adivan after realizing I had been lying here for 2 hours. So I’m just gonna take it everyday until this is all over. I feel like a drug addict and I don’t even care. A friend said be careful it can be addictive. Honestly right now I could care less. Haha. It helps and right now I need my sleep.
Annoyed with oncologist again or her admin staff. I had a fever on and off for 5 days. Today the fever didn’t come back. Yayyy! I had emailed my dr days ago and then a couple of days ago. No response. I also called twice. The first time her admin person and I spoke and said she called in the prescription to my pharmacy already (1st issue in the email) and she would ask about the neupogen and fever. Two days later still no phone call or email reply. She usually emails back pretty quick so unless she told her secretary to call me back with a message she is back on my bad list. Her admin person is so annoying and irresponsible at times. This has happened before. Because the fever is gone I will not call back tomorrow but when she does call back I’m going to tell her this is very frustrating. Which I did actually say in the voice message I left.
Still not sleepy! I have a few books I could read but don’t know if I feel like it. Maybe I should.
How long does this stuff take to work?! The wonderful world of drugs. The legal ones! I will be off them all one day but not right now. Oh almost forgot, a few people mentioned marijuana helped with chemo pain but I kept forgetting about that and only had pain with second drug. It also helps you sleep though … But that one is a more complicated habit. It might still be legal for me, not sure I never looked into it.
Little sleepier now. Good night my friends …
I read a Forbes article titled “mentally strong people: the 13 things they avoid” compiled by Amy Morin (psychotherapist). Notes added by Cheryl Conner on how each applied specifically to an entrepreneur. I think these can be applied to everyone and really most of them we already know, we just don’t always do. The reason it caught my attention is because for the last little while I’ve been struggling with my past (one that cannot be undone).
So below is rule #7 in the list of things to avoid doing, that it seems most mentally strong people already do.
7. Dwell on the Past.
There is strength in acknowledging the past and especially in acknowledging the things learned from past experiences- but a mentally strong person is able to avoid miring their mental energy in past disappointments or in fantasies of the “glory days” gone by. They invest the majority of their energy in creating an optimal present and future.
Now granted I’m going through breast cancer treatment so there is naturally going to be a lot of extra stuff going on in my brain. BUT I’m going to try my best to see what I’ve learned and use that to create a happier present and future. I do not want to waste anymore time thinking about things I cannot change or worrying about a future that isn’t here yet. Planning and doing things for the future is different than worrying about the future to the extent where it’s affecting you in a negative way.
That’s what I did when it came to wanting a baby/family. At 38 it started and by the time I was 40 it had started to consume me. By 41/42 I had gone over the edge! When I think back to all the moments in those 4 years that I spent worrying, feeling sad and depressed instead of living my life and being happy … It was so much energy and time wasted. The end result didn’t change. All that happened is that I spent more time than I needed to being unhappy and worrying. We are all allowed to have moments but that’s what they should be MOMENTS. I don’t ever want to allow that to happen again. I could have been living my life being happy and focusing on other things but instead the baby worry had taken over and was sucking the happiness outta me! NEVER AGAIN can I allow anything to consume me to that extent.
Before I get to the past which I am trying really hard to let go of I have to say that I am still feeling horrible! This was my last chemo treatment but I feel so bad I’m not even excited or happy yet. The fever is still low grade and the exhaustion and pain is better. The other terrible thing is the thrush. All I want to eat are popsicles. My mouth feels like it’s on fire … Well not as bad as a couple of days ago. Thank god. I’ve been rinsing with the prescription rinse but today my mom gave me baking soda and water to rinse with (as mentioned by the pharmacist). It seems to have really helped and feels very soothing. Which I wasn’t expecting at all. My tongue is pink again!! So to anyone having this issue try rinsing with baking soda and water. Just don’t overdo it. I’m alternating between the two.
I was reading another breast cancer blog and the woman who is around my age said that if her results were positive there was still nothing she would change. How I wish I felt that way. There is so much I would change. I’m trying to tell myself that we make the decisions and do the best we can at that time but I’m still struggling to let things go. Mainly the last year. I think if the last year was different I could live with the rest. The thing is I still have to live with all of it because it won’t change. All I can really do is focus on making the future better. I guess the hard part is the future doesn’t seem as certain as before. The irony is that when I thought it was more certain I was doing things I now wish I could change and now that I feel less certain I want to make sure certain things are different. Actually it’s not that ironic, it’s actually pretty normal. I do need to think positive though. I can’t live in fear. I have my moments right now where I freak out but that’s because I’m still going through treatment and have days where I physically feel horrible. Like now. Well I’m better than yesterday.
I’m still sad and depressed at times. I think part of it is me being angry at myself. Angry for not going to the dr sooner and angry that I stayed in a stressful relationship bc I was so obsessed with having a baby. I’m 42 and for the last 4 years that’s all I’ve wanted. A year ago I was starting to let it go but then met someone and became obsessed because it felt like it was my last chance. Meeting him was the worst thing that could have happened to me. He turned out to be such a horrible person. There were so many times something seemed off and I thought about ending things but then my baby brain would make me stay. He wasn’t just a bad boyfriend he is just a horrible human being. I’m thankful that I’m not with him but I have to forgive myself for staying and just let it go. The other part of being sad is that I will probably never have my own children. I’m accepting that but it’s hard at times. Especially when most people I know have young kids. It’s difficult. I can always adopt and that’s not even something I want to think about right now. Right now I need to get through the rest of my treatment.
In a way sometimes I think this is my second chance to make the next 40 years (inshallah) amazing ones! All you can do is learn from the past you cannot change it. Holding on to it isn’t hurting anyone but me.
Since sat night I’ve been feeling like crap. Pain, fever, mouth sores, and exhaustion. Have been more or less bed ridden. Only getting up when I have to. HORRIBLE! Then my mother left me alone for 3 hours for something which wasn’t an emergency which just emotionally made me feel worse. I’m already so emotional and vulnerable and depressed half the time I just can’t handle much more. Everything feels so much bigger than it is!
Was again thinking about my choices and they were not all bad however if I could do it again a lot of things would be different. I still feel that I could have made much better choices with men and friends. I also think I would have made different choices with my career. That part is still somewhat unclear to me. The men and friends I have complete clarity all of a sudden but career is still in a bit of a fog. I guess I’ll figure it out.
Surgery has also now changed. New date is dec 19th. Mastectomy and lymph node removal of left side only. The reconstruction will be done after radiation. I actually feel much more comfortable this way. This was based on the opinion of the surgeon doing the mastectomy. Final decision was mine but I was not 100% on doing implants before radiation so feel better this way. My oncologist also did not want to wait 6 weeks for surgery. This way we are waiting 3 weeks and a day. I feel far more comfortable doing things this way and really the reconstruction is the least important thing to me. It will get done after everything else.
Today a friend texted (she doesn’t know the details of what’s going on with me) but she told me that her ex who I know she still loved died of liver cancer. Ugh. Not what I wanted to hear right now but that’s life. She mentioned 2 months ago that he had a couple of weeks to live … I guess he really did. I thought he would outlive the timeline they gave him. Scary. If I had a timeline I don’t think I’d want to know. It would mess with my head too much. Anyhow I felt sad for her and gave her my condolences. We will talk in a few months when I’m closer to the end of my treatment and she’s had some time alone to deal with things. That’s what she wanted, time alone. I can then tell her what’s been going on and at least at that point things will be closer to the end of treatment and more positive for me.
It’s 3am and I’m still up. Barely slept yesterday and it’s day 4 after chemo. I’m exhausted and need to sleep. I don’t know what’s going on. Well I’m in pain so that’s not helping. Had a fever which magnified the pain and has just come down bc I took something. My mouth is sore (thrush/mouth sores) so eating is painful. My mom didn’t think and kept giving me stuff that was uncomfortable on my tongue. Then she fell asleep and today is my worst day so I had no energy to make any food (salad) for myself. Went to bed a bit hungry which is very bad for me right now. My brother came home a little while ago so he brought me some juice. At least then I could take something for the pain, fever and anxiety. He then fell asleep. I finally mustered up the strength to go down and get a Popsicle. Going down those stairs and just getting that Popsicle took so much effort. Also the pain is in my bones so my knees, legs, feet, fingers, back, neck … Everything just hurts. Tmo will be better.
Back to the issue of my friends. After talking to a friend earlier this evening (who has been there for me) I’ve decided not to expect anything from any friends other than the ones who have shown me that they care. Care enough to call, care enough to come see me, care enough to text and see if I’m up to talking and understanding if I’m not. Part of the reason I think I waited to tell certain people is because while dealing with all of this I don’t think I could have handled the disappointment that I’ve felt lately. I’ve had more time to deal and even though it’s disappointing it doesn’t feel as bad as it would have a few months ago.
It seems to me now that not only did I make bad choices in men but I also didn’t keep the right friends around. I have my family and don’t need a lot of friends but I still want that connection with people I thought were close friends. Not going to work, not feeling well enough to really do much and being home most of the time the can be depressing and social interaction helps. Everyone needs that support when dealing with something like this. I’m not going to focus on the friends who have not been there and just focus on the very few that have. I think what really struck me was that my mothers friends made more of an effort to call and come see me than my own. And they are consistent. It’s not like some of mine who called but then disappeared. Again seems best to have no expectations … But I am very grateful for the few friends who have shown me love. XO
Giving someone support in this type of situation is reaching out to them, not just saying call me when you want to talk. My brain is so all over the place I don’t even know how I feel at times. It’s asking how I am, asking if I need anything. It’s coming to see me so I can see a friend and talk, laugh, cry or just get me out of the house. It’s just hugging me and telling me everything will be ok.
Everyone is different but that is what I would want and I think most others in the situation would to. I know most people mean well but please don’t pretend or say that you understand (unless you truly do) because otherwise you really don’t. It’s better to listen, empathize and be as supportive as you can.
I think I needed to write. Feel sleepy now.