Time to Glow!

Heather starts her radiation tomorrow.  She will receive daily weekday treatments for 30 days.  

A couple of positives here:

1) Heather is back at work and can walk to her treatments

2) This begins another phase that is a means to an end

3) The treatments only last less than 15 minutes

A couple of not as positive:

1) The treatments will likely cause fatigue. (Additional)

2) The skin in the areas being treated will be fried requiring lots of lotions and oils

3) Though Heather's heart is positioned well it will still become scarred from the treatments

We are planning a long weekend away once the treatments are over and before the reconstruction surgery can begin and I/we can't wait.  Just the two of us for a few days to do nothing or whatever we want.

This weather stuff means nothing.  Other things seem so trivial these days.  Our perspective on life is different now and in a much better way I believe.  Peace.  Love.  Happiness to all.

It Ain't Over Till it's Over

I really don't know where to start.

That was my original first line.  I have to say that it is now 3:00 in the morning and I am in Philadelphia for work purposes.  I seriously just wrote an incredibly detailed and thought provoking blog entry that actually made me tear up when I proof read it but, due to bladder issues, i put my iPad down for 1 minute and 48 seconds.  I came back and my blog post was gone.  I will try to re-create the post in a shorter amount of time because I have to get up in 3 hours and spend the day analyzing/assessing a program to determine if it is a viable option for our organization.  Dammit!  What I will try to re-create will not be nearly as heartwrenching and direct as what I wrote over the last 2 hours.  Par for the fucking course I guess.

Heather finished her chemo on Dec 16th. Thank God that is over. What?  It's not?  No. Apparently not. 

The Oncologist informed us that the full body pain, lethargy, hormonal changes, etc. are going to last 8-9 more months?  Seriously?  I thought we were done with this shit!

Nope. 

Heather has her radiation simulation today (1/15) at 2 pm.  This is a CAT scan that will help determine the direction that the radiation beams will need to follow for 30 treatments into the arm, breast, chest cavity, and neck to make certain that all cancer cells are eradicated in case the chemo didn't get them all.

"Fortunately" Heather's heart is positioned such that the radiation will only effect/scar the top left section of her heart.  She has always told  me that she loves me with all of her heart and I hope to God this is true (I know it is) because if for some reason she only loves me with the top left portion of her heart I am screwed.

One positive is that Heather can receive her radiation treatments during the day.  She can go to her appointments which should last just a few minutes while she is at work since the radiation will be done within a stone's throw from her work.

Heather is lucky enough to have a Manager; Mark and a Director; Sue who are understanding and loving enough to give Heather the flexibility she needs to receive her raditation treatments during her working hours.

Heather and I need a break. Really.  After the radiation treatments she will continue to bake for several weeks. Once the baking/microwave effect has run it's course Heather will undergo a series of surgeries to rebuild her left breast. (As you may recall the left breast reconstruction she had at the time of her mastectomy in July failed over the Labor Day weekend which creates the need for additional reconstruction surgery.)

The reconstruction process will start with surgery that will remove muscle and skin from her back to create the proper covering for her left breast.  More info about the procedure can be found here: http://www.breastreconstruction.org/TypesOfReconstruction/dorsi_flap.html

Epiphany

I, like most people, figured that chemo was the worst part of the cancer process and that after the chemo treatments it was smooth sailing.  Let's see.  8-9 more months of chemo residuals; full body pain, lethargy, hormonal changes, etc., plus 30 days of radiation that causes fatigue/lethargy, plus a pre-condition diagnoses of Idiopathic Hypersomnolence, (a form of narcolepsy), plus going back to work, plus having to deal with three energetic kids and a stressed out husband.....Heather is on the fast track to insanity!  We all are.

Our goal is to take a much needed break between the radiation and the reconstruction process.  The proposed timeframe aligns perfectly with our 8th anniversary. (April Fool's Day for those who may not know or recall).  

We hope to take a long weekend and treat ourselves to an all inclusive resort in Mexico, take a cruise, something, anything, to give us some time to "get away from it all" and spend time getting back to the loving couple we have put on the back burner for the last 6-7 months.  Of course this takes coordination and effort.  We will need asssistance with the kids and dogs during that time.

We have received a tremendous amount of support both physically and spiritually up to this point.  Please continue the journey with us.  It really ain't over until it is over.  The chemo residuals, raditation joys, the reconstruction process, and the five years and clear timeframe hang heavy on us each and every day.

We are trying very hard to NOT make this the year (+) of Heather's cancer but we can't deny it either.  Our perspective on life has changed significantly...for the better I think....but it does not necessarily make things easier for us.

I am not very good about asking for help.  If I was the blog post would have been much short her and something like this:

Cancer is ever present in our lives.  We are controlling the cancer to the best of our ability through modern medicine and spiritual support this making it a less powerful and burdensome part of our lives but it remains a concern and will for many years to come.  We appreciate any continued support; physically through assistance with day to day things like meals and helping with the kids, and spiritually through prayer and ongoing emotional support.  None outweigh the other. We appreciate it all.

It is now 4:17 a.m.  2 hours until wake up.  I'm tired.  Must sleep.  I miss my wife and kids.  I love and appreciate you all.  Thanks for listening and for your ongoing support in whatever form that occurs.  

#fuckcancer

Just being normal would be perfect!

I don't want to hurt anyone's feelings - so please don't take this personally. This is not directed at any person but at a perception. One of the things that cancer has done for me is shifted my perceptions and I feel the need to share one.  

As we approached the holidays I had a lot of people tell me to give myself a break this year.  That I am allowed to take it easy this Christmas - it doesn't have to be perfect. That my boys birthday didn't have to be perfect - relax and take it easy. Considering I was getting my 8th dose of chemo less then a week before my boys' birthday and 9 days before Christmas that seemed like sound advice. 

I really hate to admit this to the general public but I am a fairly lazy person. I have great ideas but pitiful follow thru. But this year I did decide to give myself a break on those great ideas. My goal this year was not to try and create some perfectly magical Christmas my goal was just to have a normal Christmas. 

I have two older daughters that would have totally understood if I said we were postponing Christmas to some future date. They would have been mildly disappointed but would have totally understood. But I also have a 6 year old and two boys turning 5 two days before Christmas.  For them, Christmas is the most magical and exciting time of year, full of wonder and delight. How do you postpone that without crushing the magic?  You don't. 

You also cannot forego a 5 year olds birthday. My boys had been planning their birthday party for 6 months. 

So as everyone kept telling me to relax, don't stress yourself, don't make a big to do; I was busy figuring out what I could do to, at least, keep it normal. 

The boys wanted an Angry Birds party - so I got some Angry Birds party supplies. Relax it doesn't need to be perfect.

Their oldest sister was sweet and offered to take the boys to the movies on her day off which was the day before the boys' birthday. So I figured we could celebrate their birthday that day. We would have a dinner they liked, make a cake and celebrate as family. Relax it doesn't need to be perfect. 

After weeks of begging from Reilly we managed to get our tree up and with the help of some friends the kids got it decorated. I got 95% of the Christmas shopping done before my last chemo. Relax it doesn't need to be perfect. 

I worked on getting everything wrapped when I was feeling good. Relax it doesn't need to be perfect. 

You see, I didn't worry about the fact that I wasn't doing Elf on the Shelf for my kids even though most of their friends were - we just made up a story about invisible elves.  I didn't worry about getting lights on the outside of the house or doing tons of decorating inside the house.  I didn't worry about the fact that I didn't think to preorder an Angry Birds birthday cake from whatever bakery. I didn't worry about planning a birthday party with the boys' friends or even something with family friends. I knew low-key was the way to go. I got the kids things from their Christmas lists, I didn't spend hours scouring to find that one thing that they wanted but didn't ask for. If I couldn't find it online or on one of my brief forays out then it didn't happen.  I didn't make any special trips or go to multiple stores in search of something. 

I didn't make this the perfect birthday or the perfect Christmas but I hoped not to disappoint anyone.  I just wanted normal. You see everyone wants to say "Relax,take it easy, don't stress yourself - it doesn't have to be perfect." But what they don't fully understand is that I have cancer - I already know it won't be perfect. That my family has to deal with the reality of that cancer every day. They don't expect perfect. But what they crave more then anything is a little bit of normal. I can't take them back to pre-cancer normal but I can give them a little normal at Christmas. I can at least give them the minimums this holiday asks. 

I admit that I did stress myself a little bit. I need to get better at not expecting so much of myself. I need to get better at asking for help and sometimes I need to not have to ask. Take just a minute and put yourself in my shoes and think about what you would do, what you would want. I'm going to guess its just a little bit of normal. 

By the way, we pulled off a normal birthday for the boys and a normal Christmas for all the kids. It was all perfectly normal. 

Back in the saddle

New Year's Eve was my first day back to work. I was supposed to return the day before but managed to pick up a nasty little cold over the weekend and was not my best self on Monday. Not that I was anywhere near my best self on Tuesday but at least I was functional. 

I have not been to work in 5 months and 1 week. That's not to say I've been completely disconnected. I have tried to keep up with email and I have had many opportunities to catch up with my co-workers but I haven't really been working. So I have to say that my first day back was very disorienting!  Just walking from my car to my office had me seriously out of breath - which was a bit unexpected but probably shouldn't have been. I guess when you spend 5 months sitting on a couch you get a bit out of shape. Hey I did go down 6 flights of stairs and up 1 along the way (totally trying to justify) :)

The weirdest thing was the odd sense of time warp I experienced. Things that happened 6 months ago felt to me like they occurred a month ago. I started to find it a bit amusing when I would start to say something about last month and realize it was last summer - oops. The best part is that we hired a new employee who started on Monday. So here is disoriented me trying to teach the new kid about his brand new job. I'm just hoping I didn't confuse him too much. 

I made it through the day and didn't really get much done but I suppose what I did get done will be that much less I have to do tomorrow. 

It was an exhausting day. I was there a little too long for the first day back (and with a yucky cold) and I paid the price. This girl did not get anywhere near midnight. I slept a good 12+ hours last night (thank you my dear sweet husband). I spent today feeling like I was hit by a personal trainer on steroids.  But I am back in the saddle and glad to return to a more normal routine. 

Last chemo and the end of phase 2 of my treatment....

I have to admit that as far as the day I received my last chemo treatment goes - it was pretty unexciting. It was actually an unusual day in that it was a Monday instead of a Friday so I had a different cast of characters and it was a much longer day. I missed having my usual chemo nurse, Robin - she took care of me for half of my appointments. All of the nurses are great but apparently I like the consistency. I enjoyed getting to know her a little more each visit.  So I was a little sad that my last treatment didn't include her. She did come by and say hello but it's not the same. It was very quiet in the chemo room which also seemed out of the ordinary - there is a lot more activity on Fridays.  The funny thing is that even though it was a quiet day my treatment still took longer. In the end I had to send Mark home and have a very sweet co-worker bring me home. (The benefits of working just across the street and having awesome co-workers is that I can find help easily). 

That's not to say I wasn't a little excited. I was!  But as Mark said it won't feel like it's over until I get through all the side effects. 

And what side effects they have been!  Round 7 of chemo was really rough but compared to the last round.....  I know that I said Taxol was supposed to be easier but apparently I'm not one of those people. Just imagine the worst flu you've ever had. I don't mean the stomach flu - I mean the flu you get a shot for each year to protect against. So I didn't have the stuffy nose, cough, or fever but everything else applied in extra amounts to make up for it. In addition, I think the Taxol messes with my emotional state a a well. Sorry to my family. Luckily I started on the upswing sometime Christmas Eve - so although I didn't feel like a superstar on Christmas Day, I did feel good enough to enjoy it tremondously, thanks to a loving, attentive spouse and some awesome and funny kids. 

In retrospect....

As I entered into his phase of chemo I had developed some sense that although not fun the whole chemo thing wouldn't be too bad.  I had brief conversations with people who had worked all through their chemo treatments and the doctors and nurses had all talked about how the new drugs made such a huge difference with the side effects that I should be able to live my life as if chemo was just something else going on.  I have to admit - maybe I'm a wimp but - I'm really glad I didn't work during chemo. All the anti-nausea and vomiting meds did keep me from being sick to my stomach and losing weight during the process and I am thankful (at least for the not being sick to my stomach all the time). But the other symptoms are not fun either. 

I still love chemo and I still don't like it!