Looking forward to the sunshine! Please!

I’m not quite sure what to use for a title today. I don’t want to be depressing but sometimes I just don’t know how to deal with things.
Ok, it isn’t that bad but I wonder if my life will ever be normal again. I guess once you are a cancer patient – you are always a cancer patient even if it has been 20 years ago.
I keep thinking things are going to be leveling out and then I read another medical page and it hits me again. Here is where things stand today:
I am taking an infusion of Herceptin every three weeks at the GA Cancer office. It takes about 2 hours of my day and seems to have few side effects other than dryness.
Then on a daily basis, I am supposed to be taking Femera by mouth. I started this drug about two weeks ago. Honestly I have been awful about remembering to take it. This is the one that I’m worried about which might be one of the reasons that I am not being good about taking it on a regular basis.
The problem here are the side effects caused by this drug and the others in this group.
There are three kinds of aromatase inhibitors (referred to as ‘AIs’ from here on out) that have been FDA approved: anastrozole (Arimidex®), letrozole (Femera®) and exemestane (Aromasin®).
Basically, these drugs block tumor growth by lowering the body’s natural supply of estrogen. Their main side effects are: joint pain, bone loss, bone fractures, lowered libido, hair loss/thinning, weight gain, hot flashes and sleep issues to name a few.
I’m feeling the join pain and it’s messing with my sleeping at night. So for me, I’m not sleeping well, I’m achy and there is probably little chance of losing weight and growing a wonderful head of hair. Yes I am pissed off!!!!

This is from a doctor’s speech at one of the medical conventions:
It has been reported that up to 20-50% of patients discontinue therapy early, whether they are on TAM or an AI, and many patients discontinue without first consulting their physician. Not surprisingly, patients are more likely to discontinue therapy if they experience adverse effects or if they are not prepared for the adverse effects. Women who expressed worry regarding recurrence were more likely to complete therapy, and women who reported receiving less information about therapy were less likely to begin therapy.

I totally understand this. I feel like my hopes are being dashed as I go from one treatment to the next. So now I feel like the deck is stacked against me. I have a low chance of getting enough energy to lose weight and it won’t make a difference anyway because the medicine will actually help make me gain weight at this point.

I will say I’m sorry ahead of time and I will do my best not to be in a totally bitchy mood all the time. My feelings are seeing this as I have a lower chance of developing cancer again but my life is going to be unhappy and painful for years at least and maybe forever!
I’m going to go whine to myself for awhile and try and have a better attitude tomorrow.

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Better every day!

I’m always going to be waiting for the other shoe to drop but for now I will be happy with the good days.  I feel better. Finally my body is feeling better and not doing a lot of strange things! I’m still dealing with what the taxotere did to my nails and hair but those things are improving as well. Today I went without my hat for most of the day. It felt great not to be sweltering. Most of the time I forgot I didn’t have it on until I passed my reflection and remembered. I took photos at one of our kid’s events and felt weird being there without my security cap on. Then the AC kicks in and I need my hat for warmth. 

I visited a wonderful lady yesterday, Robbie, who is a physical therapist that specializes in patients who have had breast cancer surgery. She used to be in my surgeon’s office but as the practice has grown, she got moved out. I’m doing well for the most part with my range of motion after the surgery but it could be better. She gave me stretches and some good general info. I’m going to work on these for a few months and then visit her again to see if there is improvement.  I would recommend PT to anyone that has had the surgery. Unfortunately she isn’t on my insurance so I will only visit a couple of times. 

I had one of the receptionists at the doctor’s office ask how it felt to be back at work. I really don’t feel like I was gone. Of course I took time off but I tried hard to keep working most of the time. I think it was good for my mental health. I enjoy my job and it was good to have a reason to get out of the house on a  regular basis.  Now summer is here and the library has exploded with lots of families and kids.  This is our crazy busy time and it sure makes the days go fast!  I’m very glad that I am getting back up to speed or at least as close as I can get for now. I still get tired easy but it’s nothing like when I was having chemo.

I’m due to start the second of the drugs that I will be taking for sometime. This one is named Femara and I need to reconfirm the side effects. I think it’s mostly about joint pain etc but I will see what other delights it will bring to the table.  I asked the doctor today what was my prognosis for the future. She said it was great and patted me on the knee.  I think that was a good sign.  I’m not going to be making any 20 year plans but I’m optimistic for now.  I will always have to take each day as it comes and deal with life as I live it. 

My life is full and busy these days. I’ve always felt that I don’t have time to be sick.  Here’s to a beautiful summer and a much happier fall than last year! I have some exciting things planned for September and October.  Talk to you all again soon!

I think I have rediscovered my mind…

Perhaps! I’m not quite sure why it has taken me so long to continue writing in this blog. I can’t remember how many times I looked at the WordPress icon and thought to myself that I needed to write something ….anything! I’m going to try and use my mini for this post so the typos are Apple’s fault. 

I’m just going to dive in so try and keep up!

Today has been a beautiful sunny Saturday so of course I had to work. I really shouldn’t bitch at all because it was the first one I’ve worked in probably six months.  It was wonderful to see some of the patrons that don’t visit us during the week.  Today was my first try at having a chess group. I had three gentlemen show up to play. One guy  beat the other two so I’m hoping they come back again next month.  The library purchased 10 sets so that we could give this a go.  It’s taken me awhile to feel up to putting it together. 

The chemo part is done for now. I’m always going to be at risk and I know I am just a lab report away from starting over again. The last full treatment was April 22nd.  For the next year or maybe it will be seven months at this point, I will continue to have my infusion of Herceptin every three weeks.  It was one of the three drugs that I was taking before so I don’t expect to have a lot of unexpected side effects. It’s really a case of what won’t happen now that the other two are gone.  My body is still dry and the chemical smell for a couple of days after the treatment was really bad.  I tried to be good and drink lots of water but damnit my taste is back and I would rather have my ice coffee! 

I’m dealing with a couple of left over problems from the Taxotere. I’m losing toe nails and might lose a couple of my fingernails as well. It doesn’t hurt but is just a hassle to deal with. I’m hoping that my hair will start going back soon. I’ve heard from some that it will still take a few months. I know my body is still harboring some of these crappy chemicals and only time will fix things.  

I can feel that I am becoming more interested in things that are happening around me. I’m excited to jump back into work and see what the summer will offer to us.  I’m feeling a huge sense of a group excitement at what is happening and what might happen at work.  We still have very little money to work with but with a bit of magic we might be able to work miracles. 

I’m still not sure what to expect for my future.  I realize that nothing is guaranteed and life can and does change in a second. The way I am looking at things is to not plan way in the future but make the most of the current time that I have with family and friends.  It is still scary to think that within a year or so, I will be older than my mom was when she passed away 30 years ago.  Her cancer legacy is one that means I will have to be watchful for the rest of my life. I wish I could get her records from her doctor’s office to see if she was Her2 positive as well.  It would add another piece to the puzzle. I am hopeful that I will have quite awhile left to live because of the breakthroughs in medicine. The feeling I am getting after speaking to old and new friends that are facing cancer is that the doctors are designing targeted treatments for us all. Everyone is looking at their diagnoses from different sides and hoping they are taking the right approach. I am still a huge believer that illnesses can  be dealt with as long as they are caught early.  It’s not perfect but screening can make such a huge difference in the outcomes of our treatment. 

The legacy that I will pass down to my daughters is that they will have to always be aware of what may await them in the future. It might be that this isn’t something that is passed down among families but I am very suspicious  concerning the timing and the aggressive nature of Her2 cancers.   Since my grandmother and aunt haven’t had cancer,  perhaps this has just been one of those cosmic screw ups that will never show up again. 

I think I am starting to ramble in a bit so I will call it quits for now.  Thank you for reading this! 

Remember summer is coming and we have to stay strong!

And life goes on… And on

Jesse and I have figured that my last treatment should be the end of April. There’s a part of me that wants to focus on that date but the practical side is telling me to take it day by day. That’s probably the best way to handle it.
It’s Saturday and another day that I will not accomplish much. Jesse had a point that I would probably be ok staying home sick if I could get things done but my mind & body keep drifting off.
Keeping my fingers crossed …. So far I haven’t been sick. Things feel odd and almost twitchy at times but doesn’t hurt. I’m hoping I’m prepared this round to deal with dry skin, itchy hands, and other things best not shared.
Between two and three weeks, my hair has started to come out. I can not express how glad I am that I cut it before this happened. I could have waited a week later but I think it helped me get in the mindset that it was actually happening. I am so glad that I have healed from the surgery. I can’t imagine how unhappy I would be lying here in pain from surgery and dealing with the effects of chemo. My heart goes out to the women who are undergoing chemo and trying to heal. I’m sure that one works against the other in a horrible internal fight.
Second chemo was Wednesday . It went smoothly . My blood work numbers were good. My new cells are being produced to replace the ones that the chemo is killing. Still having issues dealing with the concept of using something as dangerous as chemo to cure cancer.
I need to keep my writing pad with me more. I know that I have missed writing down some ideas that would have been spectacular – at least to me. Amazing how thoughts hit around 3am during a quick water and potty break before I slide back into sleep.
I had some hope of using this time to catch up with my reading but I fear that isn’t going to happen. I’m trying to keep up with my work email but haven’t done the best job of that. Thank god I have such a supportive administration at work and such wonderful friends at work. There’s a long road still ahead for me but I know they will do what they can to help.
I had one of those moments of looking at myself in the mirror and saying, what the hell happened to you! While I haven’t been the most active person in the last few years, I’ve been as busy as I can. Now to see what has happened to my body and brain in the four months is hard for me to accept. Some have said that I am handling it great. I don’t know what else to do except give up and I won’t do that. I guess I could take to my bed for the next three months but I would be a complete wreck at the end. I’ve never been a big crier so that holds little appeal to me. I was warned not to drink so that is forbidden. Too many pills will cause all types of other problems so I guess I am left with just getting it over with as soon as possible and keeping my chin up. I think chocolate is still alright so there are a few pleasures left.
It’s time to drink more water so I can wash my cares and chemo away.

I need a keeper…

I think at this point, I need someone to manage what I am doing. Everything is getting messed up and I am so frustrated with myself.  I guess I have to take responsibility for messing up my port appointment. I’m not sure why I’m having problems keeping track of things. I guess I need to make sure I’m writing the dates down in the same place.
Lord, what am I going to do when the chemo is messing with my mind? That is scaring me to be honest.
The office is helping me work this out. I’m not leaving here until this is finished. I don’t think I have the courage to come back. 
I hate feeling stupid. They are being nice because I have to have chemo but I feel guilty and stupid.  Add a bit of desperation to the mix and that isn’t good.

This is my most difficult day so far….

12/23/14
I’m not sure why today is bothering me so much. I’ve had bad news and had to endure the pain of surgery but today I feel like giving up. Just calling all the treatments and plans off and just waiting for whatever bad things that are going to happen – to just happen! Perhaps one of the things that is making it worse is knowing that however bad I feel today, it will get worse and I will feel really bad in the near future. I guess that is the real bad part of having a disease like cancer, it gets worse. Occasionally it gets better but for the most part, it gets worse. I can’t imagine the feelings that individuals go through that get a really bad diagnoses such as stage 4 or that it is terminal. I still know that I have about a stage 1 cancer and if things go right with the treatments, I will probably have a long life with my family. At this point, I am not anything close to terminal – unhappy – but not terminal.
I feel like an idiot on top of being very upset over a clarification of what my chemo schedule is going to be. I will swear but can not prove it that someone said I would have treatments every two weeks but now I am being told that it will be every three weeks. Well that just screws up what careful plans I have been trying to make at work. DAMN IT! This is a problem on so many levels. I have plans that I wanted to make for programs this spring and OMG! summer is coming faster than I can handle. I am going to have to drop every bit of this on my staff. From the info that I am getting from other cancer patients, stress is a real problem. I really shouldn’t deal with stressful issues until all this is over. So when does the train to Fairy leave? What wonderful peaceful place can I go for six months while this shit takes over my life? Who will care for my family while I am gone and pay my bills for me when the sick leave and vacation leave runs out? For some reason, the extra weeks without hair is really pissing me off as well. So there probably isn’t a huge difference between 12 weeks and 18 weeks in the pages of my life but right now – right here it matters to me.
I’m working hard not to show all my emotions to my family. This isn’t all about me. My family is on this awful ride with me whether they want to or not. They don’t have anywhere to hide from it as well. I was able to get through the surgery with the minimum of fuss. Yeah it hurt and still does at time. My chest feels tight and has what I think of as lighting strikes of pain. Zing, ouch and it is gone. I’ve resumed most of my normal activities around here that include laundry, dishes, cooking, shopping, moving stuff around on the bathroom cabinet, hanging clothes up when I can’t stand to see the stacks and other fun things that most moms get stuck doing.
If the only thing that I had to deal with in this mess was the surgery, I would say that I had this licked. I’m ready to get back on track with my life and work. But the fun is really just beginning because after I lose my hair and put this awful poison in my system for six months, I get to take a pill for another year. The doctor’s office hasn’t mentioned what comes next and they talk about a day at a time. Is it where that if they told us realistically how things would go for the future, many wouldn’t continue the journey? I’m glad that I have lots of family and friends that love me and are here with lots of moral support.
I understand that many of them don’t know what to say or do at a time like this. Lord, that is so natural to me because I don’t either. I don’t know what I should be doing or not doing at this point. Weekly I am finding out things that I wish I had known a month ago. Such as there is a support group that meets in the area. Before you can JOIN them, you have to attend a newbie meeting in Atlanta that only meets on Monday morning and Thursday evening. Of course, they are closed over the holidays so I guess I will either do without that support or go after the treatments start. Another point is that chemo really does a number on your teeth. So if you have been putting off those lovely filings for months, you are screwed at this point. Welcome to January when all the shit hits the fan at the same time. Oh and if you have a bad back and would like to pursue getting an epidural shot by chance, you had better try and get that in before the chemo starts because of the risk of inflection. Good luck planning that in the two days that might be free in the next few weeks between everything being closed for the holidays and having the port put in on the 30/31 of December. That is something I am looking forward to a lot. Having a semi-permanent piece of plastic installed in my upper chest so they can make sure they put the poison directly into a big vein instead of the small ones on my arms is so exciting. Sorry I’m starting to descend deeper into the pity party tonight.
My day started with a MRI so that I could possibly have an epidural in my back before the chemo starts. That was the longest 40 minutes of my life so far but I made it through. I have an appointment to see the back doctor next week so I will see what he has to say. I don’t do well being in one position for that long. Felt like I was drowning from the drainage in my throat. Of course the day went down hill from there.

OK, I’ve taken a deep breath and calmed down a bit. The day to day things that I do around here keep me grounded. I’m getting ready to make sure that I have my bills and papers scanned into the computer so that I can find things when I have questions. It helps to put everything in one place.

And so the story continues..

It’s Friday afternoon and I had my postoperative appointment with my surgeon this morning. They were happy that I am moving around well with the minimum amount of pain. I’ve tried to stay busy around the house but my family keeps yelling at me about doing too much. My feelings are that I will do it until it hurts and then I will stop. I want to heal quickly and get back to my life.
Anyway, I took off the shirt and the unwrapping started. I hadn’t been open to the air since the surgery. Felt so strange. Dr. W. was happy with the way the scars looked. I’m still held together with super glue but it should start coming off soon. I’m going to shower in a bit. She and the PA pulled the drains out …. Put on a bandage and said we will see you in six months.

Before that they went over the pathology report, which wasn’t exactly what I wanted to hear. I wish that they would give me a paragraph that summarizes what was talked about in the four page report. What I understood was that I will be sent on to an oncologist..who will decide whether to give me a short round of chemo. I believe the report says that while they “got” everything, there was more there than expected so they want to be sure nothing shows up later. I’m a bit bummed but I think I can deal with it.
I’m trying to decide what I want to wear. I do feel naked and strangely vulnerable without my chest wrapped. It provided a sense of heft to an area that is empty now. I have the small pillow from the hospital there now and that helps a bit. I think I need to find a very snug tank top that will hold everything together. There’s some pain right now but is more achy than sharp.
I should be cleared to return to work soon. The details concerning clothes will have to be dealt with quickly. I’m sure I can handle a few hours a day but I do expect it will be awhile before I am back up to speed.