Gynecological Cancer Awareness Month

September is national gynecological cancer awareness month. Think Peach and Teal (colors representing uterine and ovarian cancer).

I'm really unhappy with the program that was on all 3 networks this past Friday.. StandUp2Cancer. There was NO MENTION of any gyn cancer that I saw. They even had some actor simulate (or maybe it was real) a prostate exam.. not very tasteful in my opinion.. but if they were going to go that far.. why not talk about pap smears and how they can SAVE LIVES!!!

You can email StandUp2Cancer at:

http://su2c.standup2cancer.org/contact.php

or write to them at:

Stand Up To Cancer
1801 W. Olympic Blvd.
Los Angeles, CA 90006

Be sure and praise them for taking a first step in getting the ball rolling.. but admonish them for leaving a whole section of the cancer spectrum out.

I just don't understand why the difference. Are we still afraid to say the words Vagina, Vulva, Uterus, Cervix, Tubes, Ovaries in mixed company? How are they so different that Prostate or Testicular? Except the later belong to men, and the former to women.. and have been sexualized.

In 2004 (the most recent year for which data are available), approximately 73,000 women in the United States were diagnosed with a cancer affecting the reproductive organs, and approximately 27,000 women died from some form of gynecologic cancer

We talk about Breast and Prostate and Colon cancer without blushing now.. why not talk about Gyn cancers too??

http://www.cdc.gov/cancer/knowledge/

DaVinci Hysterectomy

I just found that there is a video of the type of surgery I had on Youtube.

Embedding is disabled, so I'll just post the link to it. It's a looooong Youtube.. 63 minutes, but very cool. And it's not hard to watch. I was afraid, thinking it would bring back memories of all I went through, but it wasn't hard at all. And it's not gross or disgusting with bloodiness either.

http://www.youtube.com/watch?v=JJ5snlmUuxc


Alleluia! Christ is Risen.

Christ is Risen indeed. Alleluia!

*******************************************

Someone read the above post about DaVinci hysterectomy and never bothered to read the other parts of my blog......

Dear reader,

I am very aware of female anatomy. I do not need to be referred to where you wanted to send me and I won't refer others there. I do not chose to approve your comment because I don't want others misled.

When I was foundering about with my CANCER diagnosis I did contact them. They recommended a couple of procedures that IF I had followed ... I could have worsened my condition.

PLEASE read why someone has gone through a procedure rather than just having a knee-jerk reaction.

My hysterectomy was not performed lightly or for frivolous reasons, nor was it performed by a gynecologist as your comment inferred. It was to SAVE MY LIFE from CANCER!!! And it was performed by an ONCOLOGIST/Gynecologist.

sincerely,

The blogger whose cancer was caught very early and now has a 97% survival rate.

Scars

Last Sunday, Feb 24, 2008, there was an essay in the Dallas Morning News called Cancer's Scars by Karen Blessen. It was talking about the emotional and physical scars that women with breast cancer bear. I urge you to read the essay if you have time.. it's quite good.

(March 13, 2012: It's no longer available at DMN, so I've tried to change the link to a different site that has the essay, but I can't seem to get it to work. So sorry. You can find a pdf for it if you'll google "Cancer's Scars by Karen Blessen")

(I'm going to stop right here and say I have a real ambivalence about breast cancer and all the attention it gets. Yes, it is horrid and I'm very glad that there is so much attention and focus on breast cancer so that it will be funded and maybe a cure found.. but what about those of us with gynecological cancer? Are we lesser sisters because our cancer is in a more "taboo" part of the body? Or because our cancer is hidden? You can remove ovaries, uterus, tubes, cervix.. even the vagina or vulva..[and yes, there is such a thing as vulvular cancer] and the results won't be immediately noticeable. Remove breasts and you can tell there's something different right away. Ok..off my soapbox for the moment, because I really want to talk about scars.)

The essay was very touching. Brought tears to my eyes. This is the part that got to me:

For centuries, many indigenous cultures in Africa, such as the Nuba, have been connoisseurs of scarification. These "beauty operations" are both ornamental and functional. Scars are proof of courage and evidence that one can endure pain without complaint. They represent stages of maturity, how many children a woman has borne or family lineage. They are regarded as appealing and erotic to touch. In some tribes, a scarified woman is seen as sexually demanding and therefore sought after.

In ancient India, warriors proudly showed their scars – if they were on the front of their body. Frontal scars were the mark of a fierce survival of battle. ....

I want my scars to be beautiful.

I know the chances I will ever again wear a two piece bathing suit or hiphugger jeans and a midriff top are very slim.. but if I were to.. it would soothe my soul to know that my scars would be looked upon as a sign of courage.

No one will ever know the courage it took for me to go into surgery. I came so close to turning around at the hospital. If I had not had my husband with me, I would've left.

I would like to feel whole again.

I was tagged!!

My friend Nancy gave me the above award last Monday.

Here's what she said about me on her blog.. Life's A Stitch 4 Nancy:

Compulsive Hooker ~ Lisa, bless her heart, has been through some really rough times this past year. I love hearing her adventures as well. She's a say-it-as-it-is person and I totally respect her for that.


Hmmmmm...well, I have been through alot last year, with the nest becoming completely empty and finding out I had cancer.. and dealing with the realization that I am mortal after all. But I've never thought of myself as a "say it as it is" person. In real life, I'm very shy.

But.. I think having cancer has made me outspoken at least here on my blog. I don't want anyone else to go through what I went through because of lack of knowledge. I might not be able to be a public speaker in front of a crowd.. but I sure as heck can type my opinions. :)

Thank you so much Nancy for the award. It was unexpected and greatly appreciated.

Next week, after I get DSL setup, and after I get back from seeing my oncologist, I'll see about spreading the joy.

Thoughts on a Thursday Morning

I hate it when blogger is so slow to load that I lose my train of thought. Yeah, I know I could use notepad and then cut n paste.. but I didn't want to do that... an extra step.

I was reading my "Eyes on the Prize" digest mail this morning, and one of the last entries was a memorial to a woman who had started the journey through the land of cancer in 2000, and ended in 2002. Two years. Maybe she was diagnosed alot further along than I was, but that still is a very short time.

If I only had a short time left.. what would I want to do? I want to see my kids graduate from college and be secure and on their own or in a stable, loving relationship. I'd love to see my grandchildren .. who would they look like? (if my kids are reading this.. PLEASE don't feel pressure to run out and get pregnant or impregnate someone... this is just my personal thoughts).

I'd love to travel. I want to see Ireland and Scotland. I've wanted to go there since I was little. I'd love to go to Salzburg, Austria and Dieppe, France.. where my ancestors who so believed in religious freedom.. left their ancestral homes to come pioneer in the new world. How hard that must have been! In the 1600's and 1700's.. there was no IM, no jets, no autos.. if they were literate at all.. it still would take months and months for letters to travel from Europe to the Americas (we weren't even the United States when my ancestors came).

What else would I like to accomplish? I'd love to get my yarn and supplies organized. When I was in a panic over having surgery, one of the things that I did to help me adjust was to write "farewell" letters to my husband and children. One of the things I wrote in my hubby's farewell letter was what to do with all my yarn!! LOL How silly that seems now, but I do have some yarn that could be sold to help with finances. Maybe I need to start working on that, with the huge hospital bills I have.

I am not happy with one of the after effects of surgery. I miss my sex drive. Now that we are cleared for everything.. I don't have the desire I used to have. My local gyn doctor isn't very sympathetic.. he just says I need to wait and see what happens. He doesn't want to give me hormones until cleared for them by my gyn/oncologist in Houston. And I understand that and agree.. since this cancer is estrogen driven, I do need to be away from any extra estrogen other than what is stored in my fat cells for awhile.

This is very early in recovery still, and maybe my libido will return. I want the closeness that intimacy brings, but I miss having the urge to do something about it!! And I know my husband does too. He's a quiet man, but when I asked him if he noticed a difference in me, he said yes and that he too missed it.

Maybe if I told the doctor my husband also misses my drive, then I'd get some empathy? Males tend to listen to males. Do I sound cynical? Probably, but I think it's actually realistic. If a man says his sex drive has gone on vacation, I think another male would consider it a serious situation.

I am thankful I haven't had to have internal rad.. cause after internal radiation, one of the things the docs tell you to do is to have lots of sex to avoid atrophy that the rads can cause. How do you have lots of sex when you have no desire?

I swear I will see the female gyn next time.. I think I communicate better with her. Oh, and I bought some Zoestra at the store the other day, and got home and the friggin' box was EMPTY!! Sheesh, I hate that. Now I have to find my receipt and go through the potential embarrassment of trying to convince the people at the service desk that I bought an empty box. Damn shoplifters.

DaVinci Report, Part 1

I went into the hospital feeling healthy. Did not want this surgery. I know it's necessary, but I do not want it. Have not had time to get counseling that I sorely need. Offered to let my husband have it for me. Couldn't even get on the elevators at first.. had to let one group go ahead of us.

I was mad sitting in the waiting area. The hospital wanted $$ from us before the surgery. They called me into the financial office, only one chair. Hubby had check book.. I told them you don't need me. Went back to the waiting area and sat and crocheted. It was 10am, TV had a food show on and I had been NPO since midnight. MEAN!!!

I sat there and glared and crocheted.

Almost as soon as hubby came out of the financial office they paged me back to preop. Got undressed.. was given a bag to put my clothes in and a hospital gown and the stupid slipper socks to put on.

They started doing vitals, took my rings, watch, glasses, necklace gave them to hubby. I called the chaplain whose name had been given to me on the preop visit. She said she thought I was supposed to come in at noon.. I said no.. my surgery is at noon. She said I'll be right there!

She did manage to get there and we had a brief visit and prayer. I cried. The nurse came back and hubby said I was having anxiety. I said... not anxiety.. I'm grieving the loss of the woman I am now. The nurse went to get some medication.. she charted that she gave me Zofran and Versed. I think she only gave me Zofran, because I never got calm.

They moved me to the holding area and the anesthesiologist came to visit me. He asked if I would open my mouth, say ah and tilt my head back. I did, he said good. I asked about the epidural. He was surprised.. said they usually didn't do epidurals for DaVinci's. Now I'm beginning to wonder if I chose the wrong hospital... there's beginning to be so many little errors.

He said he would talk to my doctor. Ok, fine. I'm still crying. They ask if I got any versed. My husband tells whoever is asking that 2cc's of something was put into my IV, but we didn't see the vial.

My doctor comes over and sees me and asks if I have any more questions. I ask if she uses vaginal packing after surgery. She says no. I'm glad, one less thing to worry about. I give her my list of positive statements that I want said to me during surgery from Peggy Huddleston's "Prepare for Surgery, Heal Faster" book.

Several people ask me to say my name and spell it. They want my birthdate. I started to ask if they wanted my drivers liscense or SS# too. They also wanted me to tell them what surgery was planned.

When I could tell them "DaVinci Assisted Total Laprascopic Hysterectomy with Bilateral Salpingo Oopherectomy and possible surgical staging".. they were all amazed. It amused them so much that I had to perform this feat for at least 3 other people. "you must be medical people" Yes and No. I believe in being well informed and taking as much responsibility as possible for my own health.

I have to say goodbye to my husband and they take me to surgery. Still awake, still crying. I boohoo all the way into the surgical suite.

The doctor and her assistant are looking at me with real concern in their faces.

They ask me if I got any Versed. I again tell them something was put in my IV, but don't know what. They're calling preop to check with the nurse, because versed and zofran were charted, but I'm still really sad. Just sobbing.

The anesthesiologist starts putting in the epidural, has to try 3 times. I feel something drip down my back during one of the tries and ask what I'm feeling.. no one will tell me. He apologizes for taking 3 tries.. I tell him the first time I ever had an epi it took 5 tries and that was 20 years and many pounds ago.. so 3 is not at all bad in my book. He said that made him feel a little better.

They then have me move onto the operating table. I'm thinking I wish I was asleep before all this happened. I'm so scared and I don't want this necessary surgery. Still crying.

I guess they finally decide to give me something for agitation, because I'm much too alert for their liking. asking too many questions that they don't want to answer. It burns for a minute and then it stops. Shortly after that, he says something like, say goodnight. and gives me something in my IV and the next thing I know I'm vaguely hearing someone say "no, let's leave it in for pain control".

I'm in the PACU. Post Anesthesia Care Unit. What we used to call the Recovery Room.

A little later, I'm in severe pain.. but not in my abdomen. My arm is killing me.. it feels like it did when I broke my humerus about 8 years ago.

I'm yelling.. "Help Me. I'm being ignored !!" One of the nurses came over and sharply told me you're not being ignored, there are other patients here.

I told her I was hurting very badly in my arm & shoulder. I heard her say to someone else.. gas pains. (In lap surgeries they pump your abd full of CO2.. and the gas can make you hurt in weird places.. shoulders are one of them). I told her no.. it wasn't gas, it was an old fracture .. and it hurt again. I had forgotten to warn anyone preoperatively that I have reduced range of motion in my right arm because I have adapted to it in my everyday life. I never think about the right arm being more fragile than the left.

They finally let my husband come in and he confirmed that I had had an avulsion fracture of my right humerus a while back. He rubbed it and made it feel a lot better. We talked a little bit. He told me something about the pathology report, but I'm still too groggy to take it all in. I got my wedding rings back. He had to leave because they only let family stay a little while in recovery.

I had a lot of discomfort from my shoulder, but no pain meds ordered for it. I just had to tough it out. We had asked for a private room, none were available. We waited and waited and waited. It seemed like there wasn't going to be a room available until morning and I would spend the night in the PACU. I asked to see my husband again.

They let him come in and we talked about whether to wait on a Private and let him go on back to the hotel or take a semi private and risk the fact that he wouldn't be able to stay with me the whole time.

We decided to wait on the private, and I sent him on back to the hotel so he could get some sleep since I would be in the PACU until morning (he had had a really bad day the day before surgery, so he was dragging).

Of course, about an hour after he left, a room became available. I got into my room about 1am.

~~I'll post more later. This makes me sad just to type it. ~~

Ignorance as a route to happiness?

Sometimes it just doesn't pay to be diligent.

And sometimes you really really wish you had left well enough alone.

Sometimes, ignorance IS bliss.

I wish I was still ignorant.

This weekend I realized I had not seen a report of the evaluation of my biopsies by the laboratory in Dallas, that was done July 11th. So I called them today.

The pathologists there think they already see cancer.

Endometrial Adenocarcinoma, Endometroid type.
FIGO Grade I associated with complex atypical hyperplasia.

However, the ca that they saw is very small.. 2mm (less than 1/8th an inch). However, I'm still in shock. Went shopping for stuff for family then came home and cried.

I have the path report right in front of me and keep going over and over and over it.

Staging can't be done until surgery. We'll know more then.

I had this report faxed to my surgeon in Houston.

Willowy Peach Afghan

I'm working on an afghan made up mainly out of my own head...but the square pattern is from Jan Eaton's 200 squares book. It's the "Willow" Square. (that reminds me.. I haven't seen the Movie Willow in awhile.. might be time to dig it out again. Dang.. I just had a huge brain freeze on the actor in that movie.. the same one who played Jim Morrison in the Doors... sheesh)

Back to the afghan.

Colors are all by Caron Simply Soft.. Country Peach, Copper Kettle, Chocolate, OffWhite and (perhaps) Berry Blue.

Here's some pics of what I have so far.... still haven't figured out the perfect layout. And I go back and forth between liking the Peach & Copper or the Peach & Chocolate squares the best.

(please excuse the messy bed.. and the ends not woven in yet.. since I might be taking some of these back apart.. I didn't want to do that yet.)





The square in different color combos (one of them has a country blue instead of berry blue)




some other squares in the same colors...




Almost all the squares so far

Any opinions on what I should do? I'm waning to emphasize the peach color. DD says she likes the Peach & copper best.. and that I could mainly do it and scatter randomly (very randomly) the others.. then do the peach and chocolate as a border around the outside.

I dunno...I don't have enough made yet to lay that out and see.

I'm making this for myself.. as a cuddly for in the hospital (if I finish it in time) and afterwards. Peach is the color for endometrial cancer. They're still not sure if I have cancer or not.. but I'm trying to get myself mentally psyched.. just in case.

Houston Revisited

I am currently in Houston, staying at a Hampton Inn. Tomorrow I see a Gyn/Oncologist who is supposed to be qualified to do the DaVinci Robotic Surgery.

Since I have to have a hysterectomy, this is the way I want to go. I hope she approves me.

Houston has changed ALOT since I was last here. The hotel we're in was once an empty field. Amazing.

When do I get to grieve?

Well, I've finally come to the acceptance part of the five stages of grieving...I never thought I would get here.

I was stuck in Denial for quite a while, then Anger came along at having to have all of my female organs removed, I think Bargaining came in with wanting treatment with Megace and weight loss. Depression I am still moving through and have begun to accept that I will have to have surgery after all.

What I want to know is when do I get to be sad for myself? when will someone just hold me and let me cry? When will someone acknowledge that yes, it will be sad to no longer have uterine orgasms? I want someone to be sad for me.. and to QUIT TELLING ME IT WILL BE OK!!! Dammit.. it's not OK and never will be again!!!

I know I have to get this precancerous stuff out of me. Fine, I can do that. But please let me grieve.. hold me and let me cry without trying to make me feel better. Cry with me, it's ok.. I won't break just because I'm crying... but I need to cry and no one wants to let me.

Questions answered and more arise in their place

Went back to the doctor yesterday with my questions that had arisen over the weekend. 3 pages of them.

My doctor looked at them and started commenting about how smart I was to do this, I told her no.. it was my mild OCD kicking in and trying to regain a little control over the rollercoaster that has become my life recently. I was actually supposed to see both doctors, mine and her partner, (partner will be leading the surgery) but they thought partner had already left for the day. After I had finished talking to her, we found him and I got to talk to him also. Some of the answers were different, but not markedly so.

I got a lot accomplished. I got hormone levels done (4 sticks.. I'm a hard draw. Not complaining, just a fact) and I should get those results on Thursday. Hopefully this will show how far I am into menopause.

We discussed the possibility of keeping my cervix.. but that won't happen. sigh. Too much chance of cancer having invaded there.

I did get a script for Xanax. This has been very helpful. I took one after we got home and it relaxed me so much I was able to sleep for 2 hours straight. I will cut them in half from now on though... and be very judicious in taking them. I don't want to be zombied or too numb to work through the grieving process. But there are times that the crying just goes on and on and on..that would be the time to use the med. (this is when it was good that I had seen my doc first.. *male* partner said he wouldn't have given me anything.. ha.. he doesn't have to live with this overly emotional woman)

I also got a consult with a Gyn/Oncologist in Dallas at the Baylor University Sammons Cancer Center on July 11th at 1:30pm. Already discussions have begun about how to treat after surgery should it really be cancer. I'm afraid I will end up with an abdominal incision. More pain, longer recovery.

Now I need to find out what stores (a yarn store?? a LYS??) might be nearby. I plan to arrive early, Dallas traffic can be bad. Maybe stay the night. Unfortunately DH will be out of town and won't be able to go with me. sigh.

On the down side, I found out I will have to do a bowel prep *yuck* and I forgot to ask about donating my own blood, whether I will have a urinary catheter in place, TEDS hose, IV Pain med pump and if drawing blood for a cancer marker would be worthwhile.

Oh well, I can always go back on Thursday or Friday. They are going to get tired of seeing me.

Decision made

Can't I just crochet my way out of this? Give me my hooks and some giant balls of yarn (pounders.. lots of them) and let me crochet myself a cocoon .. let me sleep away all this drama, emotionalism and HARD decisions.

The biopsy came back. It wasn't positive for cancer, but the news isn't perfect either like it has been in the past.

I have "complex endometrial hyperplasia with moderate atypia and squamous metaplasia". Basically what that means is that I have a 30% chance of the atypia turning into cancer. My uterus needs to come out. And everything I've found says that Atypia is a precursor to endometrial cancer.

I have no problem with them taking my uterus out. It's the fact that they also want to take my cervix and ovaries. I have had very little symptoms of menopause... and I'm very worried about being thrown into menopause with no help.

Also my cervix has never been a problem, every pap I've ever had has been negative. New studies suggest that the cervix is important for maintaining support of the pelvic floor (delaying or preventing prolapse) and may also play a role in sexual satisfaction.

I'm emotional and obsessive thoughts have taken over my brain. I can feel them, but I can't control them.

And I'm terrified. My doctor offered to send me to an Oncologist for a second opinion. An oncologist. Everytime I think about that I want to cry. I just want to wrap myself in a blanket and hide.

I go back to my docs on July 2 to ask my ton of questions. Surgery is scheduled for July 23.