Friday, December 18, 2009

I had my first chemo!


And I swear there's a large part of me that thinks it may be my last.

It sucked. Really, really, really bad. Like I'd rather die of cancer bad. That is until I look at my kids. I've often used the expression that I would "cut off my right arm for my children". Trust me, doing chemo is the real life equivalent. But I don't know if I'm up for this. Even for them.

During the infusion their was a problem (but of course, nothing is simple) and I had to go across to the hospital to have a "port study" -- they thought perhaps my port was leaking. This would be very bad because the drug they were giving me can do alot of damage if it escapes the veins. But the port study showed no leaks so back to the infusion center I went.

I was told that typically nausea doesn't start for about 48-72 hours so we'd planned for Michael to go back to work and that way he would be home during the potentially worst part of it.

What's that they say about all the best laid plans?

When I got home I felt tired but otherwise fine...almost sent my mother home, but SOOOO glad I didn't. The vomiting began about 2 hours after I got home and continued, every ten minutes, for the next eight hours straight. We called the doctor for more anti-nausea meds...they were prescribed & given -- nothing. It finally got to a point where I was told that I would just have to ride it out and come back in the morning for IV fluids. Michael came home early and slept on the floor next to the sofa where I spent most of the night. My mother stayed in with the kids.

Today I have progressed slowly from all out retching to nauseous to queasy. I'm just so damned relieved to not be throwing up anymore I can't even begin to tell you. I went back to the infusion center and also got another injection, this one is to keep my white blood cell count up because I am doing dose dense chemo.

The bottom line is, across the board the general statistics are chemo only helps about 30% of people with breast cancer, even with all the individualized analysis of tumors, hormone receptor status and other various still comes down to only helping about 30%. It also can cause irreversible damage in various ways, from congestive heart failure, neuropathy, even minimal brain damage.

I'm gambling with my life either way.

While I sat, sofa-bound, puking in a bowl and not caring whether I lived or died, I swore to everyone around me I would NEVER do this again. That's it, I'm done. I'm already a vegan health nut I'll just kick it up a few more notches, maybe even fly to Mexico and go to one of those alternative cancer treatment centers/spas...meanwhile let them rip out my ovaries and I'll start popping those estrogen blockers asap. The doctors at the NJ Cancer Institute as well as several others all said that in the end the most important thing I can do to keep the cancer at bay is to cut off it's estrogen supply...I'm lucky to be so highly hormone positive. Luck being relative.

Today, as I sit finally able to type without getting nauseous and I look at the pitifully concerned expression my husband wears on his face each time I catch him watching my kids interrupt their all important playing to come over and give Mama a hug...right now I think that I will try another round...see if there is ANYTHING they can do to tweak my meds. Because I guess even with how awful this was (and I can't do it justice without being totally gross, trust me)...despite it all I'm too afraid NOT to do chemo.

Fear sits on both sides of me right now. It's not a good place to be.


Jean said...

Oh, dear Kayleigh, that sounds awful. I'm so sorry you've had such a bad reaction to the chemo, but as you say perhaps they can 'tweak' things to prevent that happening again?

Much love and light to you K, you deserve a break! x

kiltsnquilts said...

Oh Kayleigh, how awful for you to have to go through that. It is amazing how different everyone's reactions are to chemo, my mother has never had surgery for her breast cancer (which she knew about for 5 years before she told anyone and by then it was ulcerated!!) and 8 years on has only ever had one round of chemo, radiotherapy and arimodex (sp?). She has a phobia of vomiting (real fear, not just 'doesn't like it') and they doubled the anti nausea meds, she was very lucky to not throw up once. My point is, I suppose, that all this time later, she has had no side effects and also no surgery - the chemo and radiotherapy did it all, pretty much.

I know that doesn't help you at all though, and that your chemo is likely a completely different mix. I totally understand how you feel about not doing it - I think it takes more courage to make the decision not to than to carry on feeling so ill when you do.

I hope you can cope with the treatment. At least going in to the next one you will know what to expect and can prepare yourself and your family etc.

Stay strong, thinking of you.

~Tessa~Scoffs said...

Damn, girl. You've been to hell and back so many times they ought to give you frequent flyer miles. Seriously, I'm praying for your recovery and your family, but most of all for your positive attitude. You have been so amazing keeping yourself informed and then keeping us informed. One more thing, you need to print off all your blog posts and mail them to a publisher. This is a journey that no one should miss.

Caroline said...

Definitely speak to your doctors office - my onc did not want me to throw up - nausea was fine but actual vomiting not allowed. There is a lot of guestimating going on in chemo doses and I would think they could adjust a lot.

I personally thought of it as it the chemo diet...

The Small Fabric Of My Life said...

I am so angry I could spit when I think of the bad luck you have had over the past eight months.
No-one can make the decision for you but I think you should follow your git instinct and go with what feels right to you.
I pray for an easier ride for you.

The Small Fabric Of My Life said...

That should be gut instinct of course.

Julia said...

I'm just finding your blog now, and I found your post so affecting that I read it aloud to my husband, who is finishing medical school this year. He said he was so moved by your experience. He also wanted to know if you've considered estrogren therapy as opposed to chemo, because there is research to suggest it's just as if not more effective without being so toxic. He's obviously still a student, but he was just wondering.

Anyway, how moving. I will be following your blog henceforth. :)

Sheila said...

Oh, honey, my heart goes out to you and your family. I can't even imagine how horrible this is for you (although I've had experience with non-stop vomiting after some surgery I had a few years ago).

Be strong, love yourself, focus on the positive. Thinking of you and, as always, sending you good vibes.


Anonymous said...

I've been reading since the beginning of this blog, and I was a member of the veggie ww board (though mostly silent) and if I had half the strength that you have had during all this, I would consider myself lucky. You are an incredibly strong woman, and I strive to have the strength that you exude. You will get through this.

may the light that guides you bring you strength.

PamelaTrounstine said...

The VB... we loves you, we are there virtually to hold your hand, put a damp washcloth on your forehead, and play Uno with your kids. Really.

Anonymous said...

Sending love and a virtual hug, Kayleigh. We're thinking of you.

Anonymous said...

Hi it's Hastyfar from the VB. Hang in there. I don't know what you are going through, but I grew up and still have a hereditary illness. I have found that I am stronger than most people, despite being ill. I know you will find inner strength to deal with this. We always find the strength to do whatever it is we must do. It is not always easy, but it is possible. Just deal with this one day at a time.

If you need anything. Someone to talk to or someone to just listen to your fears. Please contact me. I am here for you. We are all here for you. We love you and continue to pray for you and send you love and healing.

Anonymous said...

Sending you loads of healing and tenacity vibes and love for your whole family.
VB horshack

Anonymous said...

I am thinking of you and sending all the vibes I can muster. May all be well....

Anonymous said...

Kayleigh, you are in my thoughts and prayers. Much love and healing vibes at this difficult time.

VB Vikingirl

Rhea Parsons said...

Kayleigh, I am so sorry you are going through this horrible illness and the horrible treatment. Your strength is inspiring. You are in my prayers and I send you the strongest of healing vibes.

VB Turtledog

Unknown said...

Please try chocolate. It really can help. 1 oz of 65% or higher cacao (no milk chocolate) 3 times a day for 3 days before chemo, the day of and 3 days after.

I know people who swear by it.

Teri S. said...

I wish I had some words of comfort for you - I just don't really know what to say other than I'm sorry you are going through this, I wish you weren't! You are in my thoughts and I hope the chemo does its job and I hope the nausea backs off. :(

Brenda said...

You've gotten a lot of advice here, but having just been through this, I will add my two cents as well.

Try taking an ativan before you go to get the infusion.

I'm sure there is more they can give you to help with the nausea. I found decadron in the premeds helped me the most, but everyone is different. I assume they told you to use the ativan under your tongue, I used it as often as every 2 hours. I also found haldol to be helpful for the nausea.

A lot of people have trouble with compazine, so think about how that makes you feel.

I found the second time around was not as bad on both meds, almost like my body was used to it.

Also, I scheduled hydration infusion to coincide with the nuelasta injections. And I pretty much just layed in bed very still until after my hydration. Its hard to eat much until day 3 or 4 after chemo.

I hope something here is helpful to you! Its a hard decision to make and I honestly do not know if I could get myself to do it again.

Anna Blanch said...

I just discovered your blog and I want to encourage you to keep writing; if it helps you to work through the mess of life because it is funny and affecting and sad and true and hopeful and wry and beautiful. Thankyou for sharing your journey - I hope it is as much of an outlet for you as it is touching for those who read your words.

Mervat said...

I really hope that Brenda's experience is repeated with you. ie that the second time is easier.

Much love and strength to you dear, dear Kayleigh.


Anonymous said...

Kayleigh Dearest, So much love and strength coming your way. May this pass quickly and much more easily and may you return to vibrant health. Love, health, and peace being sent to you dearheart.

Bonnye78 said...

Kayleigh-I'm new to the VB and I just ran across your blog and felt a need to comment to encourage you today. My prayers are with you and your family. May God strengthen your body so that you're able to endure the treatments ahead. Be encouraged by knowing others are praying with you and for you.

Chuck Dilmore said...

prayers and strength to you, Kayleigh.

please, next time
envision your followers
taking turns with your drip...

we will take your pain.
YOU just focus on the healing!

this too shall pass.
peace&love to you & your family~

Daria said...

Kayleigh, just try and get through one treatment at a time. It`s overwhelming to imagine going through all the treatment.

Sending you strength and courage.

Anonymous said...

Well I assent to but I dream the collection should acquire more info then it has.

Chuck Dilmore said...

you are - as always -
deep in our thoughts and
prayers and most healing vibes!

you will never walk alone.
we love you... your Followers.

peace~ Chuck

Anonymous said...

Again a honesty a possessions post. Because of your crony

The Small Fabric Of My Life said...

Mine is a simple wish for you.
Wishing you love, luck, health, wealth and happiness in 2010.

Anonymous said...

Kayleigh, it's Trish from the VB. I haven't posted in years but just went there to look for you and I found the link to your blog. I want you to know that my thoughts are with you, Michael, and your little ones. I am so amazed by your strength. You are an incredible, wonderful person. Please know that I hold you in my heart and I send you my love.