Post Chemo, Post Port, Pre-Rads.

So here I am, 5 weeks post chemo and doing well. Amazing really. I suppose I have felt this good before, I am sure pre-chemo I have felt better actually, but still…I feel amazing. I feel like “me”, only better.

There are some lingering side effects still going on; I am more tired at the end of the day then I used to be, my muscles still ache a bit (but that could be the Herceptin, more on that later), my mouth still has a weird taste in it, but only after I eat or drink something sweet, I am still waiting for my hair to grow and what the hell is up with my fingernails?? Seriously, these suckers are gonna fall off. I just know it.

But I feel good, damn good. Relaxed even. More energized. Happy. Who’d a thunk it??

On Nov. 19 my port was removed my Dr. C., the surgeon who placed it, and performed my b/l mastectomy. Originally I was told that the port would stay in for the duration of my Herceptin infusions and for “just in case you need more chemo”.

Just. In. Case. I. Need. More. Chemo.

Those words have haunted me for months. Like a neon bubble over my head. The port was a constant reminder of my illness, as if I don’t have enough reminders of it. So imagine my surprise when Dr. Sh. had told me it could come out. He was the one who uttered the above mentioned scary words. Guess he doesn’t think I will need chemo again in the foreseeable future. Who am I to argue with him? He is the MD after all.

Altho, Dr. C seemed surprised when she took it out, as she held it above my head, all 12+ inches of that strangely blue port and its’ catheter, that Dr. Sh. said it could come out.  “Don’t you need this for the Herceptin?” she said as it dangled over me. Nope. They can start an IV every three weeks for that, thank you very much.

By the way, I had my first of my every three week Herceptins the other day. Feel fine. Nose is runny (normal) and muscles ache a bit but otherwise, I feel fine. Thank God. I really do enjoy feeling in fine.

Really. You have no idea.

And my hair…a great topic of discussion these days, is growing in. Some places are longer than others; I think the longest is at least an inch, the shortest maybe ¼ inch. Whatever. It’s growing. There aren’t any bald spots anymore. And as soon as I no longer see scalp I am getting it colored. What is up with all the gray?? And…as it turns out…my hair isn’t as dark brown as I thought it was (as I colored it??). It’s growing in light brown, and, as of now, straight. I’m sure it will curl eventually.

So I have a few more days to enjoy until radiation starts, and enjoy them I will.

Happy THANKSgiving.

Yesterday, Thanksgiving, I tried to count up all the things I was thankful for. The list was endless. I think it is human nature to just take for granted what we have when we really don’t want for anything. I have a loving family, a network of friends that I adore, a comfortable home, a vehicle and a job when I am ready to go back to it. Which, by the way, I am sort of ready to do.

There are things I want, but nothing that I need. It has been a hard lesson to learn. But it was clear last night as Alan and I discussed whether or not he should stand in line at Walmart to get that TV that was on sale for our bedroom. We have a TV up there, an old one that sits precariously atop of a dresser. It works fine. But it’s old and clunky and can’t be attached to the wall. I have wanted to replace it for a long time. But I don’t need to.

Really, I have taken so much for granted in my life. I am ashamed of myself when I think of it.

My eyes have been opened. I have stood face to face with my mortality and decided living was better than dying and so I chose to fight. I have no idea if I will truly win this fight or not. I believe I will, but I don’t know. It isn’t up to me. Cancer cells want to live too, and fight desperately to do so. What they are too stupid to know is that while fighting to live they kill their host. And then they die. If I were a deeply religious person I would say it is in God’s hands. But I’m not deeply religious.

Even so, I will say it anyway. It is in God’s hands. I will fight it because God has given me the ability and resources I need to fight it, but ultimately my life is in God’s hands.

Did you see what I just said there? Need?? Yes, I need to fight, to live. Not because I want to, which I do, but because I need to.

Because I think God has bigger plans for me and he doesn’t want me to continue to live as I have been living. He wants me to live better, stronger.

I didn’t think cancer would change me, I figured I would do what I need to do and then just go back to being me. I see now that I was wrong about that. I see a new and improved me coming out. I see a better person emerging. One who doesn’t sweat the small stuff, one who plays more, laughs more, and (if possible) is more sarcastic. I see a more loving me, a more tolerant me, a calmer me, a less judgmental me, a me who more quickly sees your point of view.

Yesterday I jokingly made fun of someone who wasn’t here, and then felt bad about it. What I said was in humor but if overheard would have hurt that persons feelings. The old me wouldn’t worry about that, the new me feels bad.

I hope you can see this new me when you are with me. I hope my struggles have opened your eyes too. I hope you see now what is truly important and what is not. I hope you remind me of who I am now when I falter.

I am thankful to you, my reader; you have helped me thru cancerland in some way or another. Your support means the world to me, I could never repay you, but the kindness you have shown me will help me to “pay it forward”. And when I do so, I will do it in your honor, for all you have done for me.

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?