Pelvic Exenteration…

That is what it is called! It is radical surgery indeed! More radical that I imagined! Here are some of the facts from Wikipedia…

From Wikipedia, the free encyclopedia

Pelvic exenteration (or pelvic evisceration) is a radical surgical treatment that removes all organs from a person’s pelvic cavity. The urinary bladder, urethra, rectum, and anus are removed. The procedure leaves the person with a permanent colostomy and vesicostomy. In women, the vagina, cervix, uterus, fallopian tubes, ovaries, and in some cases the vulva are removed. In men, the prostate is removed.

Contents [hide] 1 Indications 2 Complications 3 History 4 References

Indications

Pelvic exenteration is most commonly used in cases of very advanced or recurrent cancer, in which less radical surgical options are not technically possible or would not be sufficient to remove all the tumor. This procedure is performed for many types of cancer including genitourinary and colorectal cancers.

Complications

After pelvic exenteration, many patients will have perineal hernia, often without symptoms, but only 3–10% will have perineal hernia requiring surgical repair.^[1]

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It is pretty radical isn’t it? I have a LOT of questions for my surgeon before I make my final decision. One of the medical sites I researched (can’t remember which one) said that a 25-45% chance was typical! Gosh, I think I would want more of a quarantee than that. I mean we are talking major surgery here. Apparently the surgeons can reconstruct you a ‘new’ vagina during the surgery or you can have reconstructive surgery later on. I can tell you something for nothing ladies….I am terrified! I honestly don’t know whether I want to do this or not. My first thoughts on it are that if I didn’t have Jack, there is no way I would do it to myself. I would continue with the Avastin, have a couple of reasonably good years, try any clinical trials that came my way and just try to hang in there the best I could. The problem with that is, I may die in two years. I have been advised that I actually will die somewhere around there, could be less, could be a bit more. The thing that plays on my mind and heart though is Jack. If I die he is going to suffer immense pain, so much that I can’t bear to imagine it. If I have this surgery, I am going to suffer immense pain, better me than him. So you see my problem, I kind of have to do this because I don’t want Jack to suffer. I would feel selfish if I didn’t do it I think. Selfish if I didn’t try whatever chance I could get. That’s the other thing, I should probably feel very grateful because a lot of other people do not get an option to live a lot longer or even be cured which is what my surgeons are going for, a cure. I don’t know, I am extremely confused. This is all another part of cancer. It seems that it never ends. I have been through so much already, and now this. Am I even strong enough to cope with this? So many questions. I am interested as to what you ladies think about my position here. Any opinions or thoughts would be very welcomed.

It’s a long hard road, but I’m gonna get there.

This post was written and posted by Alabama Pink, now an alumna of Mothers With Cancer.

Before I begin: I’m thirty-three, smug married, and wrangler to a wacky two-and-a-half-year-old. In April of this year, I was diagnosed with acute myelogenous leukemia. Based on the sub-type of AML that I have (The Mean and Nasty Kind), the White Coat Folks have recommended a bone marrow transplant as part of my treatment. The entirety of this post resides at Whoa, Camel.

At the beginning of this month, my family and I had a meeting with the VCU bone marrow transplant team , and since then I’ve gotten about 20 pounds of literature about the whole process, from soup to nuts. Needless to say, that kind of volume of information can overwhelm a gal. The one big impression I’ve gleaned from all this reading is that the bone marrow transplant process is going to suck. Big time. Unfortunately, it’s the best possible treatment for my subtype of AML, which, with chemo only, will return and will be more aggressive upon it’s return. My leukemia would most certainly be the death of me if untreated or treated improperly. On the other hand, I could die as a result of the bone marrow transplant. Totally not cool. BMT is not a cure for AML; I’ve got cancer not polio. Still, I consider it the strongest course of treatment to buy me more time on this earth. So them’s the facts, and I’ve got to put on my big girl panties and take my medicine.

The best metaphor I could think of for a bone marrow transplant is from Ender’s Game. It’s like wiping out the bugger race and then sending in human colonists to live in the abandoned bugger settlements.

See, the transplant process breaks down like this: Once a donor is found and coordination for the marrow harvesting completed, my butt is tossed back in The Big House. First, my body will undergo radiation treatments twice a day for six days, followed by two days of chemo. The real serious bitchass side effects will come from this treatment. The radiation/chemo cocktail will seriously inflame my mouth, throat, and GI tract, making eating unpleasant and difficult. My diet will be kept strictly bland for this purpose, and if it becomes necessary, IV nutrition will become part of my treatment. My energy levels will crash and burn. Rashes are a common side effect, and so because my skin is already super rash-prone, I’ll probably end up looking like Miss Hiroshima 1945.

Once the site has been thoroughly nuked from orbit, just to be safe, I’ll get my transplant. It’ll go down a lot like a regular blood transfusion. From there it’s a waiting game. Waiting to see if the new cells graft properly. My immune system will be trash at this point, so my risk of infection is doubly high. The White Coat Folks will have me on a myriad of drugs to prevent infection, as well as to manage any graft-versus-host issues that arise. Just like any transplant patient, I’m at risk for rejection. My new immune system will more than likely attack it’s new host body in some way, shape, or form. The drugs will hopefully manage the severity of the attacks. From what I’ve read, a mild case of GVH is a good thing. One of the more common GVH symptoms is a skin rash. AWESOME.

This stint in the hospital will take a month at least, if I don’t develop serious complications from the transplant that would necessitate a longer stay. I’ll be able to have visitors, just no sick ones. I’ll be completely confined to my room. In other words, the best four weeks of my life.

Once I’m deemed okay enough to go home, I’ll need a full-time caregiver. For the first few months, I’ll have daily clinic visits and multiple transfusions. My medicinal routine will be quite extensive. I will more than likely run high fevers and need hospitalizations. There will be strict neutropenic precautions to follow-no fresh fruits or vegetables, no “dirty” chores, no contact with the cats, no cooking that involves raw foods. I’ll be mostly confined to the house, no visiting places with large groups of people, and if I want to take a stroll around the block, I’ve got to mask up.

This semi-seclusion will last anywhere from six to nine months, followed by a slow reintroduction into the germy wide world. I’ll still be monitored pretty closely to make sure my new immune system is grafting properly. Still taking a crapload of pills. There will also be monthly bone marrow biopsies to make sure my transplant also kicked out the leukemia. I’ll need to get all of my baby vaccines again.

For the next year to year-and-a-half, my life will suck. There is a strong possibility I could get super-duper sick from the BMT. GVH could kick my ass in all kinds of crazy ways. I could also suffer long term side effects from the radiation like thyroid issues or other cancers such as skin or mouth. (Unfortunately, I won’t get any keen powers from all that radiation. I was really looking forward to being able to blow stuff up with my mind or something to that effect.)

This is the giant white wall that has been thrown down into my path. I can’t see around it or over it to the other side. I have no idea whether or not the treatment will be successful or will make mincemeat of me. I might not live through this or I could live my life with a body all chewed to hell. Naturally, this terrifies the living piss out of me.

At this point in the game, I need to start throwing all that fear shit out the window and start trusting in God. Better said than done folks. Job said it best that we accept good stuff from God so much better than we accept the not-so-good stuff. Time to start flexing those faith muscles.

But I’m gonna get there. I’m heading for the morning sun.

Do It Afraid

Decisions I’ve made, ignoring unsolicited advice to the contrary:

 

I did get a divorce before my kids left for college.

 

I did not take my kids to Disneyland (at least once).

 

I did tell my daughter, then a kindergartner, how babies are made.

 

I did not buy my dog a barkless collar.

 

But I’ll take unsolicited advice from my friend Sam, who lives 3,000 miles away in Talahassee, any day. Why? Because she’s brilliant, because her advice comes from a good place in her heart, and because her counsel has never failed to improve my life in some radical way (read Lucky Stars)

 

Sam’s best piece of unsolicited advice? “Do It Afraid,” she told me on the phone one day when the adrenaline was pinballing through my veins.

 

Do It Afraid. It’s like Nike’s Just Do It. Both require that you act, regardless of what you’re feeling. Only, Do It Afraid requires that you act in the face of fear. Sometimes paralyzing fear.

 

In all honesty, I did not have to Do It Afraid to check out the lump in my breast. Or to check out the post-mastectomy lump (scar tissue). Or to check out the post-menopausal bleeding I had last week. I go in for a biopsy mid-July. In no way whatsoever am I afraid to check out unusual signs and symptoms.

 

What does scare me is the waiting. And that’s where the advice to Do It Afraid comes in. These days, it’s easy to jump off the ledge; it’s the falling that’s so frightening.

 

When I went through surgery, chemo and radiation, people would say, “You are so brave.” And I felt like a bit of an imposter. I wasn’t brave. In fact, I wasn’t really anything. My feelings were pale and muted. The therapists call it terror management.

 

It wasn’t until after my reconstruction that fear hit me, announcing itself as depression.

 

I was talking to my sister on the phone yesterday about this upcoming biopsy “Are you afraid?” she asked? I told her that I wasn’t afraid when I was going through treatment but that the thought of going through it again scares me witless.

 

I would like to get on with my life. I’d like to not have to think about cancer again. But, of course, having had cancer, I now realize that’s not an option. I’ll always be thinking about cancer. In the way that Jen was talking about it in her It’s All Relative post this week. Not only is there fear of recurrence, there are the very real residual issues that we all have to deal with. Every day.

 

It’s only now that I realize how truly hard that was to start a new full-time job, be a single mom, enter into a new relationship, and go through breast cancer treatment without skipping a beat. And I don’t recount this boastfully. It simply is what it is. Or, it was what it was.

 

But now? I’m tired. In fact, I’m beyond exhausted. And I don’t know if I could do it again without falling apart or quitting my job or exhausting my savings or being a bad parent or pushing Ocho away or getting really sick. Or (horror) all of those things.

 

Still. I’ll call my oncologist each and every time I notice something unusual in my body because Sam’s advice to do it afraid is still the most sensible option I have.

 

In closing, the divorce turned out to be a healing thing, my kids did not actually want to go to Disneyland (praise God), my daughter exhibited great maturity as a kindergartner and did not tell the other kids how babies are made, and the dog is happy—but the neighbors are pissed. I may have to rethink that one.

 

To Andrea at Punk Rock Mommy: peace to you