Radiation "Mapping"

I can explain being “mapped” for radiation therapy in two words: Total Humiliation.

Please, join me in this little journey into hell…

First thing you do is go into a unisex changing room to change out of your clothes and into a gown. In my case you only have to change from the waist up. Also, in my case, I cannot take off my shirt without first taking off my head scarf. Which is a pain. It would be more of a pain to take it off, put it back on while wearing the gown then take it off and put it back on after I put my clothes back on. So I brought a hat.

Then you go into a unisex waiting room and wait till it’s your turn to go back into another room.

It will be like this when I go in for radiation too…not just for the “mapping”.

A unisex changing room and a unisex waiting room. I have issues with this. I am not a “flaunt what you got” kind of person. And right now what I “got” is a bald(ish) head and square expanded boobs, that don’t move. It’s embarrassing. And I refused to go into the unisex waiting room. And I will continue to refuse to do so. They will just have to find somewhere else for me to wait. And, while I was in the mood to refuse things, I refused to have a male technician. It’s not just “luck” that my radiation therapist is a female.

But I haven’t even gotten “mapped” yet and already I am humiliated?? Can it get worse?

Yes.

Because then I take off my gown and lay down on a cold metal slab with my arms raised over my head, a big rubber band over my feet (to remind me not to move them) and get drawn on with a sharpie while they position my head “just so” and tell me not to move as I enter some weird round machine that whirrs and does whatever it does. Then, I get three little tattoos, and was told I will get one more on my first rads appt. And was that position ok for me because that is the position I will be in each time I go in for rads?

I just lay there, silent tears coming down my face. I tried really hard not to chew open my lower lip but failed miserably at that. So now my mouth hurts. Again.

The technician told me to find my “happy place” but I couldn’t. All I could think was “Thank God I am not a man with prostate cancer”. Imagine the position he would be in. Oh the humiliation.

Anyways, I will get radiated daily (well, Monday thru Friday, not including Christmas Day and New Years Day) starting on Dec. 3.

Oh yeah…I am sooo looking forward to this.

Looking Backward And Forward.

Recently I met a local woman, my age, who was diagnosed with HER2+ breast cancer. A woman who is at the beginning of her journey. A woman who said to me “isn’t it funny when someone tells you that you are brave? It’s not like I asked to have breast cancer.”

Oh how that brought back memories. I remember thinking the same thing. I think I even blogged about it.

I never felt brave. Or strong. I felt scared, still do…but in the beginning, when you are newly diagnosed and you really don’t know what is coming next there is nothing but fear. Fear of the unknown is something everyone can relate to, but when it’s your life on the line the fear outweighs all other feelings. And feeling strong or brave doesn’t come in to play.

If you talked to me during the time period between Ap. 20 and Oct. 23 then you know I was scared. Yes, I bravely endured a bilateral mastectomy, and I bravely endured chemo. But the significant word here is “endured”. And sometimes I didn’t endure it bravely, sometimes I just endured it. And the thought of ever having to go thru it again brings me to my knees.

I hope I displayed some grace, some dignity, throughout these trials. But I know at times I did not.

But now, now…looking back I can say “yes, I was brave and I was strong”. I did it, and I plan to continue to “do it”. I plan to continue to follow the protocols and standards that have saved many lives before mine.

Don’t for one minute think that my journey thru cancerland is over. I have much more to do before I can close this book, many more chapters to go thru. All I can really hope for at this point is a happy ending.

I have been lucky to have made many sisters in pink while in cancerland. Some ahead of me in their journey, and some who walked right alongside me, going thru everything I was going thru at the same time. These women have been angels to me, life lines at times. The only people I could talk to that really understood me. And now it’s my turn to pay it forward. To help those sisters in pink who are walking behind me.

I pray I give as well as I received. To my new local HER2+ sister, my triple neg. sister and my HER2+ sister in CA…I lift you up in prayer and surround you in light and love.

20 Weeks.

20 weeks have now passed since I first walked into the infusion center at LVH and had my first chemo (Taxotere and Carboplatin) and Herceptin infusion. 20 Tuesdays. Every third Tues I received TCH but every single Tuesday I received H. Every. Single. Tuesday. For 20 Tuesdays.

For those of you who haven’t been paying attention, Herceptin is not a chemo drug. It is a medicine that specifically targets the type of breast cancer I have. HER2+++ breast cancer. Until a few years ago, HER2+++ breast cancer was basically a death sentence.

Now I will go to the infusion center once every three weeks for an infusion of Herceptin until next July. While I am glad to not have to go there every week anymore, my happiness is overshadowed by the fact that radiation is daily for like 7 weeks.

But I do have some time to rest between now and radiation. And during that time period I do not plan on resting. There is so much I want to do. So much I feel I need to do. I feel like I missed so much over these past 20 weeks that I just need to catch up. First on my list of things to do….GET MY PORT OUT!!

That’s right folks. Dr. Sh says it can come out so out it will come. I hate this stupid thing. It has made getting infused easy, of course, but I look like I am perpetually angry, what with this huge jugular vein thing I’ve got going on…which is really just the catheter making my vein look so big. It’s just nasty. And it’s a constant reminder of my “sickness”. As if I don’t have enough reminders of cancer when I look in the mirror…

The infusion nurses will just have to start an IV in my hand every three weeks from now on. That isn’t very pleasant either but such is life. Life ain’t always pleasant.

Mentally my friends, I am in a better place. I can’t believe I can say that 2 weeks after a chemo treatment, but it is 2 weeks after my LAST chemo treatment and knowing that has done my soul good. So even tho chemo sucked this last time, even tho I still have a stupid cold, even tho a big storm came thru and knocked our power out and even tho my Nana died, I am mentally feeling good. 20 weeks ago you could have told me this, and probably did, but I wouldn’t have believed you.

Next Chapter: Radiation.

You have all heard me complaining about radiation. You know I don’t want to do it. You know I am fearful of what it will do to my skin. You know I am fearful that it will damage my expanders. You know I don’t want to put off getting rid of my expanders and getting my implants implanted any longer then I have too. You know I am torn between getting it started ASAP and waiting till the new year to get it started.

So I am not going to get into any of that again.

Last night Alan and I met once again with the radiation oncologist Dr. M. Again it was discussed the idea that rads is recommended based on my young (?) age, my HER2+ status and because only one node was removed and found to have a small (0.35mm) micromets of cancer. I still wish a few more nodes had been removed…but I again stated that I was more against a total node dissection then I was against rads.

So rads it is.

It’s a big time commitment. It will be daily (ideally once every 24 hrs, but there is some wiggle room in there) for 34 zaps. Not counting weekends and holidays (because obviously cancer doesn’t spread on weekends and holidays) this will take the better part of 7 weeks. Fun times.

I can expect to experience fatigue (but nothing like chemo), redness (like a sunburn) and that is about it.

So now that I have agreed to do it, the only question left is when to start.

Dr. M. was ok with starting ASAP. She was less then ok with starting in Jan. Usually rads starts 4 weeks after chemo…so that would put me at Tues. Nov. 20.

We found a happy medium and my rads will start the first week of Dec. Before then I need to be “mapped”. Mapping is when they tattoo little blue dots on my skin to mark the areas being radiated (think Phoebe from the show “Friends” when she tattooed the whole world on her shoulder).

Alrighty. Now…lets say this cancer comes back somewhere else in my body. It was the chemo’s job to stop that from happening. I did chemo. I did it for the recommended 6 infusions. So if the cancer comes back elsewhere in my body, well…not my fault. I did chemo. I did what I was told. If the cancer comes back locally, meaning it comes back right where it started, well…not my fault. I did (will do) rads. I did what I was told.

My conscience is clear. I have and will continue to, follow directions. I have put my trust in the medical professionals tasked with saving my life. But I once again reserve the right to quit rads at any time. With your permission, of course.

On a funny note…when Dr. M walked in the room she said “aren’t you the pink flag woman?” Nice, huh?

In Michelle's Words

Two summers ago Michelle and I joined some friends for a kayaking trip down the Susquehanna River. About halfway thru the trip was a rope swing hanging over the river where a few teenagers were hanging out and having some fun. We figured this was a good place to stop and eat and maybe try out the rope swing ourselves.

Little Miss 5 Year Old Michelle really wanted to try out that rope swing and after I let her hang on it a few times but only swing out over the water and back to land I asked one of the teenagers to hang out in the water after he jumped off and I would allow her to “let go” if he would stay there and make sure she didn’t float away. He said “yes” so I handed my phone to a friend to record the moment and after making sure her life jacket was secured I gave her a big push on the rope and when she got to the right spot we all screamed “LET GO!” And let go she did.

I have it on tape. Her ponytail went straight up off her head and she splashed into the Susquehanna like a champ. The teenager made sure she got back to land safely and as she ran towards me she was saying “I did it. I can’t believe I did that!”

I did it. I can’t believe I did that.

I did it. I can’t believe I did that. I can’t believe all I have been thru lately. All I have subjected my body too in the name of good health.

I have had both my breasts removed and dealt with a long and at times complicated post surgical recovery. I did it. I can’t believe I did that.

As soon as I was over the worst of that I started having chemo pumped into my body. For a total of six times, over the course of 18 weeks, I willingly allowed poison to be infused into my body. I did it. I can’t believe I did that.

Words cannot describe how I feel about closing this chapter of my treatment. I have a lot more to do before I am done, a lot. But chemo is over. Dare I say the “worst” of it is over?

It will take a long time for my body to heal, to get back to “normal”.

But,

I did it.

I can’t believe I did that.

CHEMO CHAPTER CLOSED

And that is all I am going to say about that.

For now anyway.

Tomorrow

Oh My God. Can it be tomorrow already? Can I just get this done? OVER OVER OVER!! LETS GET IT OVER!

Lately people have been asking me if I am excited that tomorrow is my last chemo, or telling me how excited they are for me. I find that word “excited” to be an odd choice, but I get it…I get why it’s used and I don’t begrudge anyone for using it. But I don’t think “excited” is a word I would use to describe how I feel. I am “happy” that after tomorrow I can close the chemo chapter of my treatment, really, truly glad to be done with it. You have no idea.

But I have absolutely no “happiness” or “excitement” of sitting in that chair again. I am not “excited” to get pumped full of chemo again, I am not “excited” to fall into another chemo coma. I am not “excited” to feel thisclose to death again.

Don’t get me wrong here, mentally I am in a better place than usual for the day before chemo. Because I know this is the last time. I won’t be sitting in that chair thinking “I can’t believe I have to do this 5 (4, 3, 2, 1) more times. Tomorrow I will sit there and think “I’m done, please God let me be done forever”.

But a part of me is scared to stop chemo too. The poison is suppose to save my life, right? How can I be sure I got enough? Or the correct kinds? Because it’s a “standard of care”? Standard of care. As in…this works for most people, let’s see if it works for Leah too? It’s a crying shame that the chemo standards are base on the cancer and what has worked in the past and not the person.

But…on the other hand…this course of chemo I am on has statistically worked. And the Herceptin which I have received weekly since July 10 and will continue to get weekly for two weeks from tomorrow and then every third week until next July also “statistically” works. As a matter of fact, it is considered a “miracle” drug for early HER2+++ breast cancer. I sure hope it works a miracle on me.

Of course, according to my mom the miracle has already occurred. I have more faith in my mom then in any MD or chemo anyway…so “Yay Mom!”

I just want to get it over with.