One year post chemo

Today marks one year since I finished chemotherapy.  I can't believe it has been a year already.  Time sure flies when you are having fun!

So here I am not in active treatment anymore.  I have my life back!  However, the anticipation of the appointments at my oncologist office every four months gives me great anxiety as I mentioned in my previous post.  I am glad my appointments are every four months now because until about the week before the actual appointment I don't even think about it.

Things are definitely different than before cancer.  The treatments have left me with side effects that will last a lifetime.  Life changing side effects at that.  Everybody always asks me how I am feeling and I usually reply "pretty good" I know they don't have an hour to spare while I explain how I really feel.  So how do I really feel?  I feel like crap most of the time.  My biggest complaint is the hot flashes.  They are seriously so debilitating and embarrassing.  Try talking to someone in the middle of winter and breaking out in a sweat that makes your hair wet and sweat dripping down your forehead and neck.  It plain out sucks and just wait until after the hot flash is gone and you are shaking because you are so cold.  It is a never ending battle with me and I am rarely at a good temperature, I still can't believe that estrogen controls every aspect of our bodies as a woman.  As I said in my previous post I am increasing my dosage of Gabapentin to hopefully help the hot flashes but I am only on day two of the increase so I haven't noticed anything different.  I am waiting for about a week to see if I am getting any relief and if I am not then I will add Effexor to the mix but I am hopeful that I will get some more relief by taking these medications.   I do worry though because I remember when I was on Effexor before that it leaves me a bit tired and dizzy and not feeling like myself, plus they have sexual side effects too as if I don't have enough of that already (actually this was why I quit Effexor before but now that menopause and the hormone blocker have left me with these side effects by adding Effexor back I probably won't even notice anything).   I only hope that the tiredness and dizziness isn't too bad because I do work full-time and I am a mom, plus my husband is in school so I have taken on all the household chores while he concentrates on his studies.  I have so many responsibilities so these side effects only make my life more difficult.  I really wish I didn't work so many hours so that I could rest during the day.  Taking a little nap does me wonders but most days, at least during the week it is not an option.

So the other nasty side effect that is quite painful actually is the arthritis that has taken up residence in my legs.  Getting up in the morning they hurt so bad, I shuffle around like a 90 year old woman.  The more I get moving the better they feel but it never totally goes away.  I noticed about two weeks ago when we went hiking a little bit in the mountains that my legs are very unstable.  I almost fell numerous times.  I guess there are things I just can't do very well anymore.  I will continue "trying" to hike here and there but I am slow and very unsteady on my feet.

Then of course there are the sexual side effects which I detailed in my previous post that has changed the life of me and my husband forever.  Nobody ever told me about these and all the side effects when I first started chemo and maybe I am glad they didn't because I would have been hesitant to proceed with the treatments had I known and I am very thankful for chemotherapy treatment because as of now I am cancer free!  Of course these side effects don't affect everybody the same, I think I am the extreme case or maybe not, I really don't know.  All I know is sometimes it is very hard to maintain a positive attitude when I feel so bad all the time.  

I read something the other day that says after chemotherapy treatments you age 10 years.  I don't know if that is true because I feel like I have aged 20 years!!!  I have put on weight like most women do with menopause and I can't get it off and I am so over trying to get it off, I don't need added stress in my life.  I am eating healthy and exercising and that is all I can do.  I have arthritis and hot flashes.  I have bought a little hand held fan (instead of turning papers into fans) to keep in my purse so now I am fanning myself  just like all the little old ladies do.  I even have a little old lady hair cut to go along with it!!!!  So you are wondering about my hair?  Well it is still short!  I don't know what I was thinking but I thought that a year out I would have a cute little bob that would almost be touching my shoulders.  I guess I live in a fantasy land or something.  It seems each day is different for me as I style my hair because it is constantly growing and changing that I have to find new ways to style it.  It has been fun at times and frustrating at times.  I just can't wait until I get it all one length (even if it is short) and get my bangs grown out and off of my forehead so that when I have hot flashes and sweat they don't get wet!!!!  My hair is still pretty curly but I flat iron it every day but by the end of the day with the all the sweating I have, it usually curls back up.  Maybe when it gets longer I will like the curls but right now we fight each other A LOT!  So here it is below a current picture of myself.  I am so uncomfortable with the way I look and try to stay away from having pictures taken of myself and I am very nervous to post this picture for the world to see but here it is.

So I don't want this post to be so depressing so I do want to say that even with all of these side effects I really do enjoy life.  Sometimes it makes it harder to enjoy but I am happy to be alive.  I am happy to have more time with my family and to watch my daughter grow up.  I am looking forward to many more years with them.  I have a lot of plans this summer and as much as I love to travel I always have to have something in the works.  Just to have something to look forward keeps me going in a positive direction.  This next weekend my mom, daughter and I are taking a trip to Zion's national park, it will be so good for my soul to get out and enjoy nature.  I haven't been for some time but the place is amazing and honestly when I am at these beautiful places I really feel so close to God and Heaven and it brings me so much comfort!  Next we have a couple of camp trips planned for May and another camp trip to Moab in June which is another beautiful place that I haven't been to in almost 20 years.  I am so excited for Kaci to see these places because there isn't anything like them elsewhere in the world.  After Moab then we plan to put our trailer up at our lot in the mountains and camp every weekend until after Labor Day.  We are tentatively planning a little trip somewhere in October which may or may not happen.  Jeff is so close to finishing up his degree and probably won't be able to come, so if we do go it will just be the "girls" again.  I am so thankful that he is okay with us taking these little trips without him.  I just can't sit back and wait anymore, I feel a sense of urgency to experience as much in life as possible with those who are able to come along.  I know he is almost done with school and then he can come on all of these adventures too.  We are thinking of California.  We love Disneyland so we might just go there or we might go to San Diego or we might just save the money for a "big trip" after Jeff finishes school.  Traveling is what I enjoy most in life and where I make the most precious memories and life is about memories so rather than saving all my money in the bank or buying other things,  I chose to spend it on trips with my family and friends.   I am all about living in the moment because life really is short, why not enjoy it now.

So for now I will carry on and learn to accept the new me even if I am a little broken.  My husband tells me I am beautiful inside and out and one day I will believe it!  I am in the process of telling myself this everyday, numerous times a day in fact, all in front of the mirror and I will continue to do so.  I also pray a lot!  I find myself praying at different times during the day.  I find that when I am driving home from work that I turn off the radio and pray, everyday!  Maintaining such a close relationship to Heavenly Father is important for me and my well being.  While it may not work for everyone it works for me.

Until next time..........

4 month follow up

Today I had another 4 month follow up at my oncologists office.  I can't believe that  this Wednesday marks one year since I finished chemotherapy and that I am on a 4 month follow up schedule for a while.  I can't wait until I get further out and start on the 6 month schedule and then eventually to a follow up once a year.  I will try and get a new picture of my hair at one year post chemo.  I would have never believed that my hair would still be this short after a year.  I guess I had higher hopes for my hair at one year out.  It is growing and I am thankful for it but I am still not comfortable with where it is at. 

My feelings are still the same about that office.  I have such great anxiety leading up to the appointment and it takes all the strength and courage I have in me to make myself walk into that building.  It is nothing against any of the people as I love them all and they are such a great support to me even know.  It is just that all the memories come flooding back that I did have cancer and I will be forever changed because of it.  As I live each day I tend to forget about "cancer" and everything I went through and I like it that way.  I like to feel normal and I don't want people treating me any different because of what I went through and for the most part they don't. 

Today I saw a different doctor since my doctor was out.  At first I was put out that I wasn't going to see my regular doctor especially when they said to put on a gown because he likes to do an exam and I had a lot of personal things I wanted to discuss that I hadn't talked about before.  Jeff turned to me and asked if I would like to reschedule and at first I thought I might but that is not fair as I hadn't even met the guy yet.  When he came in and introduced himself I knew I was in good hands.  In fact he was one of the co-founders and is actually retired but has come back to fill in since another oncologist in the office had a stroke last year and is unable to practice any longer. 

He started with the exam and I told him about a new pain that I have on my side which also happens to be the side where the cancer was.  He felt all around and when he pinpointed the area he said that is a muscle and that I probably just pulled it.  He said that is not an area where cancer would likely come back to.  How I loved hearing those words as I have been so scared about what it might be.  I was told in the beginning that with any new aches or pains not to worry or stress about them until after 14 days.  Well this one has been going on for four weeks now but then Jeff remembered we moved a pretty big tree in our back yard about 4 weeks ago and then it dawned on me that this is probably where the pain is coming from.  The doctor told me not to worry about it for now as muscle strains can take some time to heal.  I relaxed completely upon hearing these words. 

After that I started asking my questions.  I am still having hot flashes like crazy and at first I felt like the Gabapentin was helping make them not so intense.  I have been getting about 1-1/2 to 2 hours of uninterrupted sleep at night which was better than waking about twice an hour prior to Gabapentin.  Maybe it is still helping take the intensity out of most of them but not enough for me, I want more relief!  The longer this goes on the more anxious they make me.  He suggested increasing the dosage by taking 300 mg in the morning and 600 mg at night, right now I have only been taking 600 mg at night.  He also suggested to try Effexor again along with the Gabapentin but first I am going to increase the Gabapentin and see what that does.  He said it is about the quality of life at this point and he can see that I am struggling.  He said to try this and if it isn't helping to call them because they can increase the dosage further on both of these drugs and keep trying until I get some relief.  I loved that he cared so much about me and told me not to give up and not to wait until my next four month appointment if it isn't helping.  Jeff also asked about the cold flashes which happen every bit as frequently as the hot flashes and he said that it is completely normal for someone like me.  It is something I have to deal with for who knows how long.  He also said I could try Tylenol PM to see if that would help me get some rest but for now I am going to try to increase the Gabapentin and see if that helps me and if it doesn't then I will add the Effexor and then add the Tylenol PM if needed.  I don't want to add everything at once because I want to see if some of these on their own will help me without adding other drugs to the mix.  This is going to be so hard on me because I am not one that likes taking drugs at all.  Tamoxifen is a given and will be a part of my life for a little over 9 more years (yes, I am counting down).  I am to the point now that I am going to give in and try these prescription drugs and have hope that I will get some relief. 

After that I asked my more personal questions and I am just going to put it out here on my  blog for the first time ever and not be embarrassed by it any longer.  I asked him about the vaginal dryness, no sex drive what so ever and pain with intercourse which are all horrible side effects of not only menopause but also the side effects of Tamoxifen (hormone blocker).  At this point I started to cry because it is so hard for me to talk about.  I am still young enough and so is Jeff and I feel like this is so unfair.  The doctor was so nice as he talked to both of us about this.  He said it is hard especially for someone as young as me and it is a large part of our lives.  He said that he would okay an estrogen cream to help the dryness which might also help with the pain of intercourse but unfortunately it won't help my lack of drive.  He said the only thing that can help me feel like a whole woman again would be estrogen and I cannot have that due to my high risk of re-occurrence.  He said I need to call my OB/GYN and get the cream but make sure that it is the lowest concentrated dose possible.  He said my body would absorb some of the estrogen but the Tamoxifen will take care of that but in turn I will get some relief down there.  I am going to think about this cream for now as it seems so scary to me to request something with estrogen in it.  I go back to my OB/GYN at the first of May so I think I will discuss it with her at that time. 

I love that my oncologists office can run the complete blood panel right in their office with no waiting.  All of my numbers looked great which was added relief for me.  They are however, this time sending some of it out for additional testing for liver enzymes and a few others and we will get those results in a few days.  Jeff and I aren't expecting them to be "bad" though.  Everything else with my blood counts was completely normal so we have no reason to believe that these other tests will show anything different.

As far as my diet and exercise goes.  I am still following the "My Plate" guide that my dietician suggested for me with the exception of a few cheats during the weekends (life is short so you have got to enjoy it once in a while).  I also strive to walk 30 minutes a day either on my treadmill or outside as it really does help the arthritis in my legs.  I am still at the same weight as I was when I finished chemo.  I am so over trying to lose weight.  I don't need the added stress in my life.  I want to enjoy each day and as long as I am striving to eat healthy and exercise then that is all I can ask for.  Being in menopause plus being on the hormone blockers is a disaster for trying to lose weight.  It almost always never happens.  As women our hormones control just about everything in our bodies and metabolism is another one it controls and I have zero hormones running through my body.  I am trying to tell myself each and every day that I am beautiful no matter what.  All the scars across my chest, my lack of breasts, my being over weight and my short haircut that I am still not comfortable with are all a part of my journey and I need to embrace them.   Self help talk can go along way.  

I am so thankful for a kind and caring husband that goes with me to these appointments so that I do not have to go alone.  I am also thankful for his understanding with the "new" me.  I do not have the quality of life I once had and I know it is extremely hard on both of us.  It messes with me emotionally so much, I have so much guilt that goes along with it even though it is not something I asked for or brought on myself.