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Abdominal Hysterectomy - Cancer: Ovarian TAH/BSO - VickiA's Story

From the Princess Stories Articles List

Hi all,

Well... I'm finally at a point where I feel its time to tell my whole story. This is very, very long, there's a lot of ground to cover, sooo... You have been warned!

Back in December 1999 I went to the Dr trying to figure out why I was exhausted all the time (thank you to a friend of mine for reminding me of this since I had completely forgotten this part). We did a multitude of tests and found out that among other things I was a strep carrier, of which fatigue is a symptom. In hindsight however, I really think that this was really related to the cancer more so than being a strep carrier.

A couple of months later, my sis who I worked with, ended up with double pneumonia. At the same time I had the same virus but on the outside of my lungs causing inflammation and difficulty breathing. I had actually collapsed the bottom portion of my lungs trying to keep from breathing too deeply.

On our way to a follow up visit to recheck the chest x-rays, I mentioned to my sis about a segment I had seen on TV regarding gene testing. Since we had lost both my mom (age 44) and aunt (age 60's) to breast cancer and my dad (age 61) to lung/colon, I thought it might be wise to check into our "true" risk factors.

We spoke to our Dr that day and since at the time we did not know if our insurance company would pay for the gene testing, we instead opted to have the CA2729 and CA125 blood tests done. Neither of us was particularly concerned with the CA125 but was both nervous about the CA2729 breast screening due to breast cancer being on both sides of our family.

While I knew that these (especially the CA125) were not really a true screening tool, I can say I'm very, very glad I had that test done that day.

Imagine my shock when a week later (day after my birthday of all things) I get a call from my Dr telling me there was good/bad news. My CA2729 was just fine however... the CA125 came back extremely elevated. Normal levels are up to "35" of which mine came back at "656"! YIKES! I thought I was going to loose it right then and there! Thank goodness my sis's tests were all fine! Whew!

I was then sent on to my regular Gyn for a checkup (now, I'll admit here that I had been a bad girl the prior year and missed my annual exam). I had never had a painful pelvic exam prior to this but I'll tell ya, this one HURT! This apparently did not bode well either.

He in turn sent me to get an MRI, which showed a large mass in the ovary/pelvic area. At this point I was referred on to a Gyn Oncologist who again examined me, said he could feel the abnormalities of the "mass(es)" and we would proceed with surgery as soon as it could be scheduled. At this point it was decided that since he is a surgeon, he would be performing the surgery along with my regular Gyn assisting.

He did tell me that although the chances of it NOT being cancer were pretty slim, we wouldn't completely rule out other conditions. This we wouldn't be sure of until pathology was performed during the surgery itself.

So, I had all of two weeks or so to give my assistant (sister) a crash course in taking over my job duties. I don't think it helped keep her mind busy as much as it helped mine, however.

Dr. had me perform the lovely (NOT) little bowel prep the day before since he wanted to make absolutely sure that if anything additional needed to be performed, all would be ready.

I had both sisters and my niece helping me get the house ready, move the computer next to my bed, TV into my bedroom, etc. so I would have everything ready to go once I was released. I wholeheartedly recommend saving some of this till the day before if for no other reason to keep you busy.

Of course, what should happen the day before I'm scheduled for surgery... my period starts! Figures! It just HAD to bug me ONE more time!

Surgery day arrives, April 17, 2000... I arrive at the hospital, get checked in, paperwork’s all done, change into my lovely little gown and stockings! I get to then meet my new best friend, the anesthesiologist who took very good care of me and made sure to give me something to help calm my nerves. They actually worked so well that it scared my sis (bless her heart) cause she's by now in panic mode and I'm lying there calm as can be.

Next thing you know, I'm being wheeled away down the hall, saying a very groggy "bye" to sis, through the doors of the OR, see that big ole light and then boom! Lights out for me! I don't remember anything past that point until I was in my room.

The surgery itself, amazingly enough took less than two hours to complete - surgery, pathology and staging all included. Dr found that it was indeed cancer we were dealing with, Stage IIIC Ovarian. Ovaries were "grapefruit" size (where they were hiding I still don't know); it had also spread to the bottom of my stomach, appendix, omentum, a portion of the bowel and a couple of lymph nodes.

From what I'm told (although I'm sure it wasn't me doing this stuff) I was a very happy girl that night. I apparently was high 5ing other patients down the hall, telling the nurses I was going to bring them our wonderful brownies and muffins from work and even called work and boss at home, all higher than a kite.

Family and friends came to visit (that was wonderful), my room smelled like a florist (which was great) and I had a wonderful nurse taking very good care of me.

Dr came to visit the next day (now that I was coherent) and let me know the outcome of the surgery. So I was not going to get away without having to go through chemotherapy.

So far, with the exception of the diagnosis, I was doing pretty well healing wise. Well, that came to a screeching halt in the middle of the night on night 2-post op. Apparently I had gotten an infection and ended up sicker than a dog. Now it really is NOT fun to throw up after abdominal surgery. OUCH!!! At this point I was introduced to a NG tube (NOT my idea of a good time) and I banned everyone from coming to the hospital - 1) it was just too uncomfortable to talk and 2) I did not want to scare my family (primarily my 4 yr old nephew) with this "tube".

I couldn't eat anything for a couple of days due to being so sick; so, by Friday (day 5 post) I was a very cranky girl. I'm not very nice anyway when I'm hungry but being without food for over two days had flared up my ulcer so in addition to being very nasty, I was in pain also. I made them finally give me some broth, which thankfully I was able to keep down so they finally removed the tube. Woo Hoo!!!

Finally, on day 6 I was released to go home! I was exhausted, sore and very relieved to see my pups again. Since I was going to be recuperating for the most part alone, my niece stayed the first few days with me just in case I needed help and to take care of my four legged babies. We used a baby gate to keep them in the kitchen (specifically the rowdy black lab) and make sure none of them accidentally pounced on me.

I did a lot of walking up and down the block in those first couple of weeks. Sigh! I'm remembering now how lovely it was to have 6 whole weeks off of work. I hadn't had a vacation in a very long time prior to surgery and took full advantage of the whole time off. I was able to do some work from home to help keep up on the work load but it was ever so nice not having to get up and go to work for a while. (Not to mention the lovely afternoon naps)

Okay, back to my story... About a month later I began my first round of chemotherapy treatments using the Taxol/Carboplatin combination. Once every three weeks, staying overnight in the hospital each time as each one lasted several hours between the anti-nausea meds, chemo itself and general IV's I was given.

I was warned that by the 2nd to 3rd treatment, the hair was going to go. Boy, were they not kidding!! Luckily, I had already gone wig shopping and purchased a wig that matched my own hair pretty well. More disturbing to me than loosing my hair however was loosing my eyebrows and eyelashes. I soon became quite the pro at drawing them in with a brow pencil. (Helpful hint here. use a lighter shade that normal as too dark looks very odd, also darkening the upper and lower lids make them seem less naked)

The treatments themselves weren't too bad, however, there were some very annoying side effects that bugged me to no end. Primarily the "chemo brain" (I'm told that was common with the Taxol), numbness in my fingers and severe joint pain. The best I can describe the joint pain is like trying to walk on two sprained ankles. I was told to begin taking mega doses of B6 which helped with both the joint pain and numbness. The "chemo brain" was another thing though, about the only thing I could do was make sure to keep a note pad handy since I couldn't remember a thing. (A note here, this side effect stopped very quickly after completing the treatments).

In the midst of the treatments I was introduced to our restaurants regular customers who was a hairdresser and also had quite a few cancer patients for clients. He was able to order wigs at wholesale prices for his clients, which I then became one of. I was already getting a bit tired of wearing the same wig day in, day out so ordered several. It was really a lot of fun playing musical wigs, my co-workers however never knew what color/length/style of "hair" I would show up in.

I finished up my treatments (last test at this time measured "18") the end of August 2000 and yep, went to dinner and dancing to celebrate! (Another note here... YES, you can dance in wigs, just make sure they are secure and don't let anyone spin you too much or too fast).

This is right about the time I stumbled upon a website called "HysterSisters"! Here I found not only women who've also experienced hysterectomies but also women who had already battled or were also in the process of battling cancer. Here I found women I could relate to, voice my fears to, share my experiences with, who would in turn share theirs with me, all the while offering {{hugs}} all around. you all!

I can honestly say that this site and all the friends I've made here have saved my sanity more times than I'd care to think about, especially considering what was coming next.

A couple of weeks later I began having some very nasty pains in my back/lung area. It felt like someone was tightening a band around my chest and made it very difficult to breath. I was checked and thought to have had pneumonia. I was then put on some very strong anti-biotics to try to get hold of this.

A week later, I was no better, instead was actually much worse and while talking to the Dr's office, my nurse noticed my "breathlessness" when doing something as simple as crossing the room. At this same time, my tumor marker test jumped from the 18 back up to 181. I was sent to the ER for more testing which included something called a "Thoracentesis".

Turns out I did not have pneumonia, I did have however have what they call a "pleural effusion", a build up of fluid in the pleural cavity of the lung. This thoracentesis is the process of removing the fluid via a catheter put through the back into this cavity and draining the fluid out. Oh momma! Did that thing hurt to have done! Partly because the tissues were so inflamed by this time and this had to be done twice since it shifted during the first try. They ended up draining a "liter" of fluid out and sent it off for testing. (Geesh! no wonder I couldn't breath very well)

Anyway, the testing came back and the fluid contained cancer cells, luckily however, there was no tissue involvement. So, back in to consult with the oncologist as to what the next step would be. It was found at this point that the cancer I had was "platinum resistant" and had not responded to the "platinum" based chemo I had had for my treatments. He then suggested we try another type of chemo drug - Topotecan which is another drug they've seen good results with.

I started the new round of treatments the following week, similar in that it was given once every three weeks but every day that week and only lasted about 1/2 hr - 45 minutes each time. After the first week we realized that my veins just were not going to hold out like they had the first time. They blew out several times that first week so it was then decided that a vascular port would have to be put in. I had that inserted into my arm right before beginning the second week of treatments and it really did make things much easier.

Now, the good thing with this particular drug is that it did NOT cause that same "chemo brain", nor did I loose what hair that had started growing back (it did slow down the growth however), nor did I have the really bad joint pain again. Whew! It was something anyway.

I finished up the treatments in February 2001 and have been keeping a very close eye on my levels ever since. Each time they have measured between 14 - 16, well, well within normal limits. I was told that they'd like to keep the port in "just in case" as long as we could.

Well, last week the port finally came out!!! I've just passed my 6th month of normal levels and the port was causing some discomfort so out it came. What a relief that has been, I can't even begin to tell you how much I wanted that constant reminder gone!

All in all, while I can't say my whole experience was entirely pleasant and I did have complications during it but I really don't think I had as rough of a time as some experiences I've heard or read about. Not once throughout any of the treatments was I actually physically sick, nauseous yes, sick no.

I'm still, at this point working on getting my energy level back up to a normal level as I still tire easily. In addition, since I'm unable to take any hormones I'm now working on finding relief (outside of hiding in the air conditioned indoors) from hot flashes, night sweats and insomnia. I have been taking numerous vitamin supplements that have helped in addition to a couple of new meds that seem to be helping quite well with the insomnia troubles.

In addition I'm now getting back into dancing on a more consistent basis. Not only is this a great way to get your exercise, it also is so much FUN!

So, finally I'm finished telling my cancer success story (novel) I warned you, didn't I? I'd like to again say thank you Kathy for creating this wonderful site, thank you to the wonderful ladies I've met since I first came here and bless you all for your continued support of all our "sisters" here. If I can help even one woman as much as you all have helped me, I will be ever thankful.

{{hugs to all}}

Vicki

08-26-2001 - 04:12 PM


SHARING IS CARING


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