Chemo is around the corner

Here I sit with my hair in tact and a bit dirty (since with the cold caps you can't wash your hair 2 days before and 2 days after chemo).  I am trying to figure out how all of this is going to go.  I am really nervous.  I know there is no turning back now and I have to go forward.  It feels so hard.  It feels so uncertain.  The fear of the unknown is really sinking in at this point.

Tomorrow I start taking the oral steroids.  They have you take them a day before chemo to help your body not react to the chemo.  One of the added side effects of the steroids is tons of energy.  Normally that would be a plus, but already have tons of energy and don't sleep well even with xanax so I will probably be sleepless for a few days.  Won't that just make the whole chemo experience even better hu?  On Wednesday they will also give me more steroids with the chemo.  I will also continue to take the steroids the day after chemo.  I am praying that I will sleep at night.  The last time I went without sleep after surgery I was a emotional wreck. 

On Wednesday we need to be at the infusion room at 8am.  They will start to get me ready and do my pre meds.  I will wear the sub-zero frozen caps for 50 minutes before chemo begins.  Then for the next two hours while my chemo is administered, I will continue to wear the caps, putting a new one on every 30 minutes.  Once chemo is done I have to continue to wear the caps for 4 hours, changing them every 30 minutes.  It will be a minimum of 7 hours with sub zero caps on my head.  I am taking Ativan and Tylenol, but somehow I don't think I will get off not feeling awful.  I just don't know how I will get through Wednesday.  The thought of it seems so unbearable.

I remember when I was pregnant with my son and I knew I was going to be induced I was so scared.  I remember telling myself "it's just one day in a lifetime and at the end you will have something so amazing".  I guess I have to tell myself the same thing this time..."it's just one day in a lifetime and at the end you will have something amazing".  It's just that the something "amazing" is my life this time.  I know that I have to walk through this right now and I have to find every ounce of my emotional energy to push myself through this.  I keep thinking that every time I want to give up I want to look at my son's picture and see his beautiful face and just push myself for him.  I love him so much and want more than anything to be here to raise him and watch him grow into a good man. 

I know I have to do this.  Like I said before, there is no turning back.  Chemo is right in front of me.  I keep telling myself I will walk through chemo just like I did with my surgeries.  Those were easier than I thought and the recovery has been easier than I ever imagined.  I hope with every ounce of myself that I can walk through chemo the same way.  I am trying to stay positive but it is hard at times.  I know I will break down at some point....I hate doing that in front of the people that love me.  I hate breast cancer and I hate chemo....period.

The last wash........ahhhh, it's going to be a long few months

Chemo officially starts on Wednesday.  I don't feel ready.  I guess you are never really ready to do chemo, but what I really mean is I am not ready literally.  I have so much to do before then!  Ugh!

Since I am doing the Penguin Cold Caps to try to keep my hair through chemo, I am overwhelmed with that.  I spent the day doing trial runs with the caps with my husband so we could figure out what to do and how they worked.  I tried out my new electric blanket.  My husband searched all over town for an infrared sub zero thermometer so we can check the temperature on the caps.  I still have a few haircare supplies to get tomorrow.  Who knew I would spend so much time on hair with breast cancer?  I am so hopeful that I can spend a lot of time on my hair in the coming weeks and months!  That will mean the cold caps work wonderfully!

The title of my post is referring to the last normal hair wash.   With doing the cold caps, the normal hair routine of the past is tossed out the window for several months until my hair is definitely in tact and doing good.  So tonight I took a very long hot shower and washed my hair a long time.  I put the conditioner in and let it hang for a long time.  I then rinsed with nice, hot water over my head for what seemed like an eternity knowing it would be the last time I do this for months.  Ugh!

With cold caps, you have to wash your hair in tepid water - no warm or hot water for months.  You can only wash your hair once or twice a week too during chemo and beyond.  You have to really baby your hair.  No curling irons, flat irons, hot or warm hair drying (that is going to be fun since it is freezing here where I live and February!).  I have already switched to all organic hair care products that don't contain sulfates or parabens too.  That has been an adjustment in the past few weeks.  I have to give up coloring my hair for months too....ick!  I have already purchased the temporary hair color for my root touch up.  I have invested in a few cute hats and headbands with anticipation of many bad hair days to come.  I hope I do have many bad hair days - that will mean I have hair!!!

I don't mean to sound like I am complaining...it's just so hard to give up so many things you take for granted.  Even simple things like a relaxing hot shower with a good hair wash, or styling your hair pretty for a date with your husband.  With all I am dealing with, this should be the least of my worries, but yes, I confess, I am getting obsessed with the hair!  This is funny considering I am not much of a primper and don't always even wash my hair daily to begin with.  Now I am so worried it will be gone and for me that represents carrying a huge pink sign that says "I have breast cancer" around everywhere so the whole world will know my medical status.  This is bad enough to go through privately let alone announcing "I have cancer" to strangers at the grocery store. 

That shower with a nice hair wash tonight felt like "The Last Supper" or something.  It was odd.  I guess I will be dreaming about "the first wash" in the coming months, but for know I keep praying I will have something to wash in the coming weeks.

What a pain in the back!

I got my tissue expanders filled yesterday again.  Now I am up to 360cc's. This was my third fill in three weeks.  I kind of knew what to expect from the previous two fills and thought I would just have a tight chest for a few days and not sleep so well for the first two nights.  Last night was a rude awakening!  My chest is tight as expected, but my upper back is in agony!  I exercise all the time and have never experienced pain like this in my muscles.  My poor back is hurting constantly.  It's so uncomfortable I can barely sit propped up on pillows or lay on it propped up on pillows.  Ugh! 

I took some tylenol and that helped just a little.  The hot shower helped while I was in the shower, but the pain returned after I got out of the shower.  My husband rubbed my back and it even hurts to the touch.  All I can say is ouch! 

Last night I did take the xanax and a tylenol before bed.  I did finally fall asleep and slept for about 4-5 hours ok.  Then I was up and in pain again.  I did do my rehabilitation exercises and stretches last night and first thing this morning despite the pain thinking it would provide some relief.  It didn't really do that, but I will keep doing them anyway.  I have not been that uncomfortable in weeks from all of this. 

My poor back is going to take some time to get use to having these larger breasts I guess.  I hope this pain does not last long.  It is really hard to even find a position to get comfortable in.  So far the most comfortable thing is to sit up and just let my body hang forward and round out my upper back.  I can't sit like that for long, but it provides some relief.  Ugh......it is going to be a long day.  I am bummed because my husband got a sitter and planned a surprise date tonight!  He had even booked a hotel for the night but since I am so uncomfortable we both decided to sleep at home so I can have all of my favorite pillows.  I hope I can manage to enjoy the evening.  I feel so bad that my hubby planned this nice surprise and I feel so crappy.  I will go with a smile on my face and find a way to have some fun.  I am so excited but just wished I felt better.

My hair-saving arsonal

I am trying to finalize everything I need to start chemo next week.  I am trying to get my chemo diet in order so I can make sure to eat as healthy as I can all through chemo to keep my body strong.  I am also trying to get all the supplies together that I need for the whole hair-saving extravaganza!  I had no idea this would be so labor intensive.  Oh well, I guess it gives me something to do in the coming weeks! 

I have paid for the cold caps and gotten my instructions for how to use them so that is ready to go.  Now all the supplies!  I have been trying all different organic, sulfate free and paraben free hair products in the past few weeks to see if I can find things that will work with my new hair care program.  In addition I had to get some ColormarkPro natural root touch up kit (you can't dye your hair for a while and I need root coverage!) at the tune of $21 for a small bottle!  Ouch!  I then had to get some headbands and hair scrunchies (yes, I did say scrunchies...who knew they still existed?  I thought they were gone in the 90's....I can't believe I have to wear them - but the will pull less on my hair).  I then had to get a satin sleep cap to protect my long hair while I sleep so it doesn't get pulled by rolling around.  Well what's a satin sleep cap without a satin pillowcase?  Got one of those too.  Then I bought a water misting bottle for the days I can't wash my hair.  I also had to get moleskin pads to protect my forehead while wearing the cold caps.  I even had to buy some panty liners to cut and put on my ears during the cold cap treatment so my ears don't freeze.  So now I am sitting here picturing what I am going to look like with moleskin on my forehead, panty liners on my ears and a frozen cap on my head!   This will be quite a look.  Now I am on the hunt for a subzero thermometer...all in the name of hair.  The good news is that my new electric blanket arrived today - that will be my new favorite thing for chemo days. 

I am trying to get myself emotionally ready for this.  For some reason this whole chemo thing really freaks me out.  Maybe it's because it somehow really makes me a cancer patient...maybe I am in denial....I don't know.  I just know that I am very anxious.  I got an Rx of Ativan just for the occasion and plan to take it right before I leave the house that morning.  I am scared of the whole process of the cold caps and worried that we won't do them right or something.  I am scared that I will feel really bad from the chemo and have side effects.  I know once I start walking the chemo road, I will just keep walking like I did on the mastectomy road (and that road had not been that bad for me so far).  I have to really dig deep within myself to get through the first chemo day.  I am scared I will want to give up on the caps because it will be so uncomfortable.  I need to set my mind on finishing chemo and just moving on with my life with my hair in tact so there is no daily reminder of chemo and cancer.  I just want to keep picturing a wonderful summer with my family.  I just have to keep that picture in my mind during every hard moment of the chemo.   It is going to be a long nine weeks. 

Chemo port is in

Today I had to go to the hospital to get my chemo port placed.  As usual, I had major anxiety over having another procedure done and yet another nasty scar on my body.  I feel like I look like a road map without my clothes on.  I now have 4 scars.  Nice.  I hope one day they will fade.

I got to the hospital at 9am.  My brother took me today as my husband had to travel for work this morning and will be gone until the end of the week.  So once they took me back to the pre-op area in the Heart and Vascular Center, we waited and waited.  They informed me shortly after being there that I would be awake for the procedure.  I was good all morning and did not cry until that moment when the resident told me.  I just wanted this over with and certainly did not want to "experience" it and remember it.  They were going to use "twilight sedation" on me meaning that I would be awake but pain free and perhaps not remember anything.  I just lost it....the tears started falling.  My poor brother did not know what to do.  At that moment I just wanted my husband to be with me.....it sucked.

They finally took me in for the procedure around 11:30am.  Way to go making me wait for over 2 hours agonizing over the misinformation I was given about sedation.  The nurses were all very nice and understanding given my situation and really took good care of me.  The doctor only came in once I was sedated...never really spoke to me, just got to work.  An interventional radiologist did the procedure.  The only nice perk of being awake in not in the OR area was they allowed me to bring my IPOD and use it during the entire procedure.  I put on my calming, peaceful music and closed my eyes to just not be "present" for the experience.

I was not really in any pain.  I just felt poking and some pricks here and there.  I do remember mostly everything, but I was calm and relaxed.  I am glad it is over with.  They placed the port in my right am as my plastic surgeon did not want the port placed in my chest.  The port is on the inside of my upper arm about mid-bicep.  It looks like there is a small grape under my skin.  You can't see the port at all, it is completely under my skin.  The lump of the port is bruised right now.  Hopefully that will fade quickly. I finally got home from the hospital around 3pm.  By the time I got home I was feeling queasy so I had some toast, took some zofran and laid down for a while.  I felt better within 45 minutes or so. 

My arm is quite tender especially when I move it around.  It's not sharp pain or anything, just enough to be a little uncomfortable.  I took some tylenol for the pain and that seems to be helping a little.  I hope I can sleep tonight without it being painful.  It seems like everything always hurts worse at night. 

I had to skip my rehabilitation exercises tonight as my arm is just uncomfortable.  I hope tomorrow I can go for my morning walk and do my exercises and stretches to get moving again.  I don't want any setbacks.

I am glad this is over now as it was causing me anxiety.  Now I can just focus on the next step (and the next source of anxiety), chemo.  Six more days until the poison flows through my body.  Ugh!  I am dreading it completely.

Feeling Normal

Last night we went to a birthday party and the only people there that know of my diagnosis were the hosts of the party.  It was only the second time in a long time that I went somewhere and people did not know I had cancer.  It was odd to just mingle and talk with people that I know and not have anyone look at me and say "how ARE you?"  It was actually quite refreshing.  I felt like this was the first really "normal" thing I have done in a really long time. 

The only part that was hard was when people asked what was new or how's work.  Hummmmm, how do I answer that?  So "what's new"?  Maybe I should say something like "oh, not too much, I have breast cancer, had a lumpectomy, bilateral mastectomy, I start chemo soon and these are my new fake boobs!"  Or to the work question...."I wouldn't know about work, I am on disability for this stupid cancer thing.....".  So I quickly realized I need some "canned" answers to these questions if I am going to continue to try to do "normal" things.  So by the end of the evening I had perfected my canned answers.  On the work thing it was something like "oh, you know work - busy and crazy".  For the what's new thing, it was something like "oh working and trying to push through winter in hopes of an early spring".   After saying these things, I tried to shift the conversation to the other person just so I could have something to talk about. 

I guess this goes with the territory of not shouting out to the entire world that I have cancer.  If the cold caps are successful in keeping my hair during treatment, no one will ever have any idea that I have cancer.  I will definitely have to perfect my "canned answers".  I never knew that an acting class should be part of the process when you have cancer! 

At this point, I feel good.  I can't believe it has only been three weeks since my surgery.  I figured it would take way longer to feel this good.  I was even feeling pretty sore from getting my tissue expanders filled on Friday, but now I feel a lot better.  I know I have to buckle down because the next two weeks are going to be really hard.   I know I have to take one step at a time and not look ahead at everything.  I am trying hard to do that, but it feels impossible at times.  It is very overwhelming.  I guess this week I just have to get through having the chemo port put in on Wednesday.  That will be a long day for me with a lot of anxiety for sure.  It has to be easier than a bilateral mastectomy, right?

Bigger and bigger

Yesterday I had my second fill in my tissue expanders.  That was fun (said sarcastically!).  I drove an hour to the plastic surgeon's office and my nurse was so happy that I was doing so well.  She was amazed and so encouraging.  That was nice and made me feel good as a lot of this feels like a struggle.  She also told me that she was so excited I was doing the cold caps to keep my hair.  She said I was the first patient in her 12 years of doing this that has ever tried it.  She wants to follow up close with me on the whole process and wants information for her other patients.  It's just so sad to me that more people don't know about the cold caps and are not told about this choice to keep their hair and dignity during chemo.  I hope to change that a little and be living proof it works.  Gosh now I really feel some pressure for it to work well....I would hate to show up in the office in a wig...nothing like a little more pressure.  Yikes!

After my first fill last week, I was up to 220 cc's in each breast.  She wanted to put an additional 100cc's in each side yesterday!  I told her I was concerned because I drove there myself and had an hour drive home!  So she listened to me and put in less....an additional 70cc's in each side.  I could feel the pressure as she put more saline in.  It doesn't really hurt bad it just feels tighter and tighter.  The needle part doesn't really hurt either...you barely feel anything.  It's really not that scary.  I just felt tight when I left and took it real easy driving home. 

So now I have these two, round, awkward tissue expander breasts - one is higher than the other (which is common....they never know how they are going to lay in there).  I don't notice it so much in clothes, but naked looking in the mirror I can tell.  They are probably a little bigger than my own breasts were so I am getting use to that.  I will try another fill next week and try and decide how big I want to go.  It's kind of cool.  I have been waiting for my breasts to grow since I was twelve!  The boobie fairy finally came!

I can say that last night my chest muscles were almost spasming!  Ouch!  I had a rough night sleeping.  I did force myself to do the physical therapy exercises before bed and I cursed the whole way through because it hurt horribly!  I woke up a lot during the night so sleep was not good.  I did the exercises again this morning and they were a little easier.  In a day or two I will be back to where I was yesterday before the fill.  I keep saying it feels like "just a bad workout".  I can do this.  I can't wait to have my real implants and have a little cleavage!