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Updated roll call/words of wisdom?

LizGrrr's picture
Posts: 124
Joined: Nov 2011

It's been a a few years since Linda P started the roll call. Reading the intros I was surprised with the volume of UPSC sisters...although the gyn/onc practice I go to in Dallas is one of the larger in the area I've yet to meet anyone with 'my' cancer.

Anyhow, I'm 7 months post-diagnosis and thought I'd share a bit about what this journey has been like. Here's my story:
*Spent the summer of 2011 thinking I was going through menopause at age 45 (no big whoop, I started my period when I was 10 so it didn't surprise me to think I'd go through menopause early)

*Ultrasound in September 2011 indicated a fibroid

*D&C was unsuccessful (who knew a uterus could have a septum, just like a nose?) so had a robotic hysterectomy in October 2011

*Pathology report came back positive for UPSC

*De-bulking/staging surgery in November 2011 indicated I was UPSC Stage IA

*Started chemo (taxol/carboplatin) in December - 3 treatments, each 3 weeks apart

*Had 25 rounds of external radiation between February-March 2012

*Resumed chemo (taxol/carboplatin) in April...two down one to go

Things I learned about my body:
* It heals, even when I think it won't

* My veins are shot, I bruise easily (even got a superficial blood clot from an irritated chemo line), but that passes and I'm now used to walking around in short sleeves even when it looks like I just got out of a MMA cage fight

* Chemo- and painkiller-induced constipation is real and my sure fire remedies of queso, salad bars, Pringles, and pizza are nothing. I'd rather drink the prune juice/Milk of Magnesia cocktail than have a hemmorhoid!

* The something-crawled-in-my-mouth-and-died taste lasts 2 weeks after each chemo treatment. If I want to enjoy a good meal I have it before or right after chemo. From then on it's Asian cuisine heavy on the soy sauce, and German potato salad heavy on the vinegar. You'd think I'd lose weight since nothing tastes like anything, but I keep eating hoping something will taste good. At least I'm saving money by not eating out all the time.

* Chemo bone pain is real, and not every med works for everyone. Hydrocodone did nothing for me, but a combination of Tylenol 650 and Tramadol has been a miracle worker. And if my Rx runs out my dog takes Tramadol too so I can always get in her stash

* Insomnia sucks. The steroids and the painkillers are the big culprits, and after a few days of sleep deprivation everything seems worse. Thank heavens for Ambien.

* There are benefits to being a bald lady! Getting ready in the morning is a snap, and many cute fellows will call you 'pretty lady' and compliment you on your haircut. And you can wear tons of eye makeup and still look good. And big earrings look fabulous

* I like not having to shave my legs/arms or pluck my eyebrows

* Radiation fatigue is real. I'm lucky that it didn't linger much after treatment. Neither did the diarrhea. My bladder is not the camel-like organ it used to be, but it still works.

* Feeling alone is the worst. These boards, my friends and family and colleagues - I'd be lost without them. Through these I've learned to be my own advocate, to not put up with condescending medical staff, to ask the same question 100 times until I'm satisfied I understand the answer, to be open about my treatment and symptoms because someone out there has been through the same and has tips for survival, to maintain a sense of humor.

I'm now looking at my final round of chemo in June (hopefully final!). I'm more afraid of the unknown/waiting than I am of the treatments I've undergone. But time will march on whether or not I'm scared and I'll just have to deal with whatever life throws at me. It is what it is.

My heart goes out to all the folks I've met in my journey - virtually and in the waiting rooms of hospitals and clinics. Everyone has had an impact on me and for that I am grateful.

Liz in Dallas

Posts: 683
Joined: Apr 2010

Wow Liz with your attitude you are on your way to a full recovery. I would like to share my experience with you, but right now I am caregiver to my lovely 45 year old daughter who is suffering from Leukemia very bad journey, some how I strongly feel she will be successful with her treatment, in the mean time her chemo is brutal. Be well, June

LizGrrr's picture
Posts: 124
Joined: Nov 2011

My mother has been my caregiver, too. She flew cross country for the first surgery and stayed through the second (OMG was that a tough procedure to recover from) which included 5 days in the hospital, screaming pain, lymphedema, leaking/gushing incision, inability to get in/out of bed unassisted, inability to wipe my own butt.... I could go on and on and on.

She stayed through chemo (two weeks here, one week there), radiation (5 weeks and is back on the 2 weeks on/1 weeks off for these last 3 chemos.

I don't know what I'd do without my mom. She keeps a stiff upper lip, laughs when I need it, cooks and cleans without complaint, loves on my dogs more than me :)

When her husband/my dad was diagnosed with brain cancer 6 years ago I quit my job and did the cross country thing to help take care of him. It truly evolved our relationship so we now see each other as strong, capable adults - but still mommy and child :)

Nothing is like a mother's love. I am so lucky to have my mom just as your daughter is so lucky to have you. While it's hard to caretake for a child, I'm so glad I'm the one who's going through this instead of my mom. We'll emerge from this with an even deeper love and appreciation for each other.

Liz in Dallas

HellieC's picture
Posts: 524
Joined: Nov 2010

Liz - you speak for us all - so many of your comments resonate with me.

The hair loss - somehow not quite the trauma I was expecting it to be - the regrowth an interesting journey into styles and textures that my "normal" hair wouldn't tolerate. Now I'm back to my "normal" hair, somehow it is a little disappointing that I can't sport the funky, short styles that my chemo hair allowed - they were so low maintenance!

I've also learned a lot about people. Some of those who you think would draw close and provide the best support are unable to cope and drift away. At first I was upset, but then I realised that they can't help it. And anyway, they are replaced with others, sometimes from the most unexpected quarters, who stand firm around you and help you march down this dreadful path. I bless them everyday - they have helped me more than they can ever know.

I am 15 months post chemo and currently NED from my second recurrence of adenocarcinoma. I am currently waiting for results of my latest MRI scan to investigate pelvic pain and I am trying "not to trouble trouble until trouble troubles me"! Every day is a gift.
May you continue to "dance with NED".
Kindest wishes

Posts: 13
Joined: Mar 2012

Hi Helen and Liz,

First, Helen, I hope that the MRI test results show that the pelvic pain is something simple to resolve. Second, I adore the line "Not to trouble trouble until trouble troubles me". Thanks for sharing it.

Liz, your post was great and I hope that these last weeks in treatment zap whatever cells they can and that your own immune system kicks in fast and that you are NED for decades.

I have Endo Ca Stage IVB Grade 1 and am in a clinical trial. I am considering dropping out of the trial at the end of summer. I think by then my immune system will be functioning normally and that could and should do more than almost anything else. Admittedly I am scared to get out of treatment as it seems like a safety net although I have had considerable effects from it and those, too, compromise my health.

I had surgery (exploratory that turned into debulking) in November 2010 and then started the clinical trial in February after a surgical wound infection cleared up. Bodies are amazing and know their job in closing wounds!

My treatments are at UCSF and these days I find that when I sit in the chemo chair I start getting anxious. I think some PTSD has set in about going to that building. While I had surgery elsewhere I now associate that building with cancer not wellness.

Liz, I enjoyed your recap about all that you have learned and I can echo some of those sentiments.

Best wishes to all.

HellieC's picture
Posts: 524
Joined: Nov 2010

I think the full version is:

"Never trouble trouble, till trouble troubles you. You'll only double trouble, and trouble others too".

My husband's mother created a sampler with this on it when she was young. I found it amongst his possessions a few years ago and had it framed for him (he lost his mother when he was 16 - she was only 43 years old and died from a brain tumour).

Somehow it seems to resonate as we travel down this road!

Kindest wishes

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