Not the best week ever!

Forgive me for taking so long in between updates.  It’s been a lot more difficult than I had expected.  Tuesday, the 4th, was the worst day at chemo ever.  I’ll explain, but I’ll have to start with a little background first.

I’ve fought a bitter battle with endometriosis for years.  In fact, all three of my children are bona fide miracles.  I’ve had numerous surgeries for it, each time thinking that I’d get better.  I did, for a brief period of time, but then it would come back – really, really angry.

Something that has made my endo even more atrocious is the fact that I have massive amounts of scar tissue all over my abdomen, & a ton on my back.  In one of my last surgeries, a specialist was called in to try to take down as much of the scar tissue that’s entwined on my spine.  He couldn’t, because it was so twisted in & around my spinal column, he was afraid he would paralyze me. 

As such, all the rounds of chemo have been extremely painful, especially in my abdomen & back.  But my spine has been on fire constantly.  I’m thinking that the poison is making tissue gripping my spine terribly inflamed.

I really haven’t been out much, other than to go to chemo, or to other doctor appointments, due to pain management issues.  I did venture out to our cyber school fair, but Matt ended up taking me home early.  He could see the strain of the pain on my face.  Michele about booted me out right along with him.  She’s really taken his side through this whole ordeal in terms of keeping me home.  I mean, it’s like she & Matt are taking care of me or something (she says teasingly & most importantly, gratefully).

The first rounds of A&C, followed by the Neulasta, were killer.  Of course, I asked for pain management meds, as it was horrible.  I was so happy when the doctor told me that the next round, Taxol, was going to be a breeze in comparison.

Well, it wasn’t.  Not even a little bit.

My back still hurts, & there’re many days when I don’t manage to get out of bed until 12:00 or 1:00 pm.  And even then, there’s a bit of crawling involved.  I went online, & found that other women, without the extenuating circumstances that I have, also find Taxol to be painful.  I’d say out of the American Cancer Society’s message boards & other breast cancer boards, approximately 25 – 30% of women have a great deal of pain with Taxol.  So, of course, I still needed help with pain management.

I can’t take NSAID’s (Aleve & other drugs like that) as I’m EXTREMELY allergic to them.  Sadly, they seem to really help some women.  But, again, not all women. 

Whether I like it or not, I have to continually ask for pain medicine.  And that’s where I’m really getting mad.  The doctor & his “nurse practitioner” are making me feel like I’m doing something wrong.  It’s as if they think I’m some type of drug addict that had the good fortune to get cancer.  Woo Hoo!  I can get narcotics now.  Um, riiiiggggghhhhhttttt.

Well, it got way worse Tuesday, May 4th, when I had Aubrie with me.  The NP, Brianna, ACTUALLY ASKED ME, “Are you usually this dramatic?”  Dramatic??  Is she KIDDING ME??

Let’s see, I just lost a breast, & for all intents & purposes, half of the other (the lumpectomy took a great deal of it).  I’ve battled a major infection, had emergency surgery 3 times in the last few months, &, oh, yeah, I’m facing a deadly disease.  So, maybe I AM a little dramatic.  I was stunned & said nothing.  Aubrie, on the other hand, was texting her sister, & was having a major hissy fit.  Of course, so was Elyse.  Matt was being told what was happening, & he was furious.

I guess that they, oncologists, really just want to get rid of me, as they’ve come up with a new option.  Instead of having smaller doses of Taxol, I’m going to have triple doses at one time, followed the next day by Neulasta.  This will mean that I’ll only have to see those people three more times.  But I’m a little nervous, because if I’m in pain having a single dose, this triple one is going to really, really suck.  Of course, I’ll have to do it with a minimal amount of pain medication.  But you know what, I’d rather do that than to ever have to see those people again. 

If you have any ideas of what I should do, would you let me know?  Matt’s coming on Tuesday to see the doctor.  He’s pissed, but I’m wondering if I have legal options or something.  I’m surprised I’m even saying that, as I’ve never entertained the thought of suing a sole – ever.  But, I feel that I’ve been treated badly, & have been put through a great deal of unnecessary anguish.  I especially never want to see that Brianna, who’s supposedly a woman. 

The problem is, I don’t want to interrupt my chemo.  If I take the time to find someone else, would it do irreparable damage to me?  I don’t know, I’m just very, very angry.  More than that, I’m dreading the triple dose treatment.  Obviously, it’s going to be killer.  Also obviously, Seisholtz has no intention of helping me get through it with a minimal amount of discomfort.  Soooo, not looking forward to Tuesday.

But, on the bright side, I still feel like I’m the most blessed woman in the world, & I’m grateful for what I have.  I have a terrific husband who worships the ground I walk on.  There isn’t anything he wouldn’t do for me.

I have three children that I never should have had.  The endometriosis threatened to keep me childless for my life.  But somehow, I have these amazing babies.  They’ve been wonderful throughout this ordeal.  We usually go away for a long Mother’s Day weekend at the shore.  This year, of course, I physically couldn’t do it.  Did they complain?  Nope.  In fact, they’ve done everything to make it seem that this is going to be the best Mother’s Day weekend ever.  And they aim to keep that promise by taking me out to a late lunch & then to the greenhouse to buy plants.  I’m hoping that I can do it all without having to cut anything short.

I have wonderful friends, who’ve been sooo supportive.  I’ve been given cards, homemade herbal heating pads, flowers, balloons, suppers, gift certificates, crocheted hats & shawls, & the list just goes on & on.  If I needed the smallest thing, all I’d have to do is pick up the phone & know without a doubt that I’d have someone there in a heartbeat.

There have been complete strangers who’ve given of themselves for me during this time as well (free bras, flowers).  People who have read my column & saw me at the pharmacy have come up & given me hugs.  I’ve been told that they feel like I’m their friend (through my writing).

The list goes on.  I wish I could thank each & every person who’s touched my life, but I’d be here for days.  I love reading your comments in my guest book, & I love that you write to me privately at my gmail account (tamkells@gmail.com) to tell me your experiences. 

So many of you have shared so much; it’s touched my life.  Life isn’t fair.  But even so, there are people willing to help you during the hard times.  I’m amazed at the chorus of Earthly Angels that have been sent my way.  And I’m quite certain that everywhere I go, I’m surrounding by God’s Guardian Angels.

Thank you to all my Angels & to all of you who’ve kept me in your prayers & hearts.  I’m a lucky woman.