This is really happening, isn't it?

When I first started this blog, I said something about feeling like this wasn't even happening to me.  I began this journey detached, not to mention completely unaware of what I was in for.  Well, at this point, there is no denying that this is 100% happening to me.  For the last two nights, I haven't even been able to separate from it all enough to just... sleep.  Every bit of "that area" feels like it is either on fire or just, like, disintegrating.  Literally.  My skin seems to just be falling off.  The blisters I've written about look almost gray in color.  At yesterday's appointment, the nurse examined me and decided that what it may be, rather than blisters, is a yeast infection.  Not in the traditional location, but just there in the folds of my skin.  Gross.  So, now I've added Monistat to the list of seemingly useless goops that I am smearing around my groin, none of which have helped in the slightest.  I also finally relented, yesterday, to accept a prescription for pain meds.  But just as I expected, the negative outweighed the positive, as the Oxycodone made me far more nauseated than it did pain-free.

And then there are the constant fears...

I'm afraid that the nasty, weird, peeling gray skin down there will get infected.
I'm afraid that infection or my own inability to continue will delay the last few treatments.
I'm afraid of ending up in the hospital.
I'm afraid the side effects will kill me.
I'm afraid that if they don't, this pain will go on for months after treatment is over and I will go insane.
I'm afraid that the treatments won't get all the cancer and that I will have to go through this AGAIN.
I'm afraid of spending the rest of my life worrying about the cancer returning, or ending up with secondary cancer FROM the treatments.
I'm afraid that all of this is getting too hard on my family.
I'm afraid of never feeling "normal" again.
I'm afraid to poop, because it hurts so much with my new friends, hemorrhoid and fissure.
I'm afraid NOT to poop, because I don't want to end up constipated again.
I'm just afraid.  Of everything right now.

It's difficult not to feel isolated and alone, even though I know I am neither.  But when I can't really leave the house, and at this point can barely leave my BED... I am definitely struggling.  And even though I have an amazing husband who brings me Mexican Coca-Cola in the glass bottle and a beautiful mother who comes and takes all of my towels to the laundromat, I'd much rather be able to go do these things myself.

The love I'm getting from all of you is incredible.  And I apologize for not being able to give appropriate thanks in a lot of situations.  I am exhausted.  Physically AND mentally.  It's taken me nearly ten hours to write this post.  And I haven't really slept in two days.  I'm going to try that now...

All my love to all of you,
Phoebe

Comments

I wish you weren't in pain. but fear is one thing you can control. I can't even imagine how hard it must be to try to do that though. I wish you could meet my mom right now. rest easy when you can. I'll be talking to my saints about you. love you!
Anonymous said…
Dear Phoebe,

You are not alone and there are probably more people in the ether who care about you and your struggles than you can imagine.

I know that support groups usually trend towards women older than you, but it is my hope that you can find someone who has shared some of your medical journey to talk with.

I hope that life just gets so much better for you and Ryan and your family.

Your family is much stronger than you think because they are fueled and steeled by their love for you. They are imbued with wisdom from their life journeys and I know it is their wish to prop you up and support you in any way they can.

Every breath you take is a thank-you note, so don't worry about it.
Anonymous said…
Phoebe--You don't know me but I have worked with your dad at Freedom Mortgage (love that man!!). Anyhow, just wanted to let you know that you are on my prayer list and I will continue to pray for you and your recovery. Please continue to stay strong so you can beat this nasty cancer.
Sincerely,

Joanne Wetzel, a friend you have that you don't even know!! God bless!!
Anonymous said…
Check out Chris Karr (Crazy, Sexy Cancer) at http://crazysexylife.com
Although the organization supports young breast cancer survivors, please check out http://jdbcfoundation.org because they have links for all sorts of assistance (http://www.jdbcfoundation.org/educational-resources/financial-resources/).

Pure Enchantment at Beachcliff Market Square is stocked with goodies approved for people undergoing radiation.
Mary said…
I don't know you. But I know you from your blog. You are very brave young lady. I pray every day for you. I pray for your strength to see this through to the other side of health and happiness that knows no bounds! I was online looking for a new pair of slacks. Instead I will donate that money to your medical bills.

Mary K, an LHS classmate that did not really know your Dad in HS.
r'n'r-RN said…
Phoebe, it probably doesn't feel like it, but you are doing amazing. I know you hear "you are so strong" all of the time, but it really is true! Cancer has a hard time fighting against that kind of strength.
we love you!
Daniela said…
My Divine Ms. P,

I would make it all go away if I could. I know things are dark right now, but I also know that your light can beat anything. Anything. Sending tons of love and healing vibes your way.
jim nelson said…
Phoebe, Phoebe , Phoebe....
I wish this was all happening to me instead of you. You are stronger than you know. Fear is a common response to things over which we have no control. Replace the fear with faith. Faith in all those who are loving and supporting you. We are all here to see you through this. Together, through love , support, and the prayers of countless people, many we don't even know, we will beat the shit out of this cancer and you will begin to feel better again. It's gonna happen! Hugs, hugs, and more hugs I love you..dad
Anonymous said…
Pea bee....
my prayers are with you and I know I have not gone through through this experience but my heart knows pain and fear. I loveya and know there are many peeps out here praying and sending good juju your way. peas sister, pam
Gale said…
Phoebe,

Hi, it's Gale (again).

I have to break this response into at least 2 or 3 fragments.

Consider asking for some anti-nausea meds for the pain medication side effect, and try Milk of Magnesia: 30cc every 4 hours (up to 3 times a day) until you go.

If the anti-nausea meds don't work, then switch pain medication. Pain is completely unacceptable and completely treatable, and you will NOT become an addict. Promise.


So, okay. Let's address these concerns:

"I'm afraid that the nasty, weird, peeling gray skin down there will get infected."

--Keep the area as clean, dry and well ventilated as possible (it sounds as though you have this under control, already). Try to eat more protein, because you need it for tissue healing. Protein shakes, even Carnation Instant Breakfast, if you can tolerate either, will help. Your immune system is being assaulted with RT & CT. Rest, try to eat, be kind to your body. If sleep is currently a problem, please ask for some medication for that, as well. It is temporary, and sleep and rest are paramount for you, right now.


"I'm afraid that infection or my own inability to continue will delay the last few treatments."

--If either do, then they do. You will either complete them on schedule, or you will catch up. Your brain and your body are amazing, your spirit is amazing, and they will carry you through this. Let's not worry about something that may not even happen.


"I'm afraid of ending up in the hospital."

--Unfortunately it could happen, but from what I read on your blog, I have the sense that you will address any issues early, before you require hospitalization. You're smart, and very attuned. And, you have many resources to help you catch problems before they become crises.

...continued...
Gale said…
Continued...

"I'm afraid the side effects will kill me."

--Infection is the largest physiologic threat, and you seem to understand how to identify and deal with it. Anxiety and fear are the other ones. Are you getting counseling? You might consider it, because this is worth it.


"I'm afraid that if they don't, this pain will go on for months after treatment is over and I will go insane."


--Phoebe, please, please, please seek pain treatment. The narcotics you will take, you will not be taking to party. You will be treating your cancer. Pain creates its own horrible syndrome (as you have just identified), and it is an unnecessary and treatable complication. If you believe nothing else I've written, please believe this.


"I'm afraid that the treatments won't get all the cancer and that I will have to go through this AGAIN."

--Well, this is a real fear, because cancer is a m/f sneaky disease. I sent the link to your blog to my friend, Shadia, who has been through what you're going through and has emerged CA free.

--Remember: you are being treated extremely aggressively (duh) at a world-class facility, you're young and otherwise healthy, and you have a fierce outlook. Everyone who is reading your blog and everyone who knows you and your family is praying and thinking and sending energy your way. In my experience, that's about 80% of the game.


"I'm afraid of spending the rest of my life worrying about the cancer returning, or ending up with secondary cancer FROM the treatments."

--Again, valid. See above, because it is the same equation.


"I'm afraid that all of this is getting too hard on my family."

--Phoebe, since I don't know you personally, I can't comment extensively, but judging from what I know, you have a boatload of people who will stay with you. This is not your fault. The people who love you know that and will not judge you, or skate because it "gets too hard."



"I'm afraid of never feeling "normal" again."

--You are in the middle of the worst of this treatment. Many people report that the RT is worse than the CT. Aside from the side effects of the direct beam, you have tissue breakdown that causes you to feel just horrible in general. Like the flu times a million. After the RT is over, you WILL feel better. Aside from physiology, from a common sense standpoint, just think: if you take away a noxious influence...how could you *not* feel better?


"I'm afraid to poop, because it hurts so much with my new friends, hemorrhoid and fissure.
I'm afraid NOT to poop, because I don't want to end up constipated again."

Please check with your MD, but the above described MOM regimen works pretty well for people on long-term narcotic pain medications. Stool softeners can be used in conjunction with laxatives. Again, this is temporary, in case you're concerned about dependence. I also have a whole food recipe that will help.

Phoebe, I hope this helps a little, and I hope I haven't posted anything unduly embarrassing or offensive. Please reconsider the pain medication. Most side effects from oral narcotics go away after a few days, so it is not as though you will have to take nausea medicine for very long. But you will definitely need laxatives, at least in the short term, in any case.

Hang in there, Phoebe. We love you.

Gale
I'm so glad there is someone like Gale (post above) in your corner Phoebe! with honest advice.
Diane said…
Phoebe,
You are the bravest person I know right now. Love you. You inspire me. Aunt Diane

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