i am a butterfly…

Posts Tagged ‘cancer sucks’

Done, done, done! As in finished. Complete. No more!

Yesterday I got official word from my doctor that I can stop using the wound vac. It’s impossible to say how happy this makes me. Over the last 9 weeks, I have grown to despise this machine.

There’s still a small hole, but it’s not deep or long, so I just have a wet-to-dry dressing on now. I have to change it myself twice a day until the skin grows over it, which should take a couple of weeks.

I’m just going to consider this another tool in my kit for the end times or the zombie apocalypse: wound care knowledge. Between the knitting, soapmaking, and now this, I’ll have several skills to fall back on when society collapses, be it from rogue computers or zombies.

But I think I digressed a little…

D is for Done! And I couldn’t be happier.

I know, I know. I’ve been a bag blogger. And a bad ABC-alonger. I fell behind at B this year. That has to be a record. I plan to catch up this weekend.

For now, I have more about the wound vac to talk about. I talk about the wound vac a lot, unfortunately, because my life is pretty much consumed by this thing these days. The wound is much, much smaller now. It’s only (only, ha!) about 2 inches long, an inch wide, and a little under an inch deep. With its smaller size, however, have come a raft of problems.

The most pressing problem – to me, anyway – is that the foam has begun to smell. A really horrible smell. My nurse thinks it smells like cigarette smoke, which I think is crazy because it clearly smells like shit. Literally. When I first began smelling it, I was constantly checking the litterbox to see if it needed cleaning and it was usually fine.

The first time it happened, the nurse and I were really worried that there was an infection. But when she took the dressing off and cleaned the wound, the wound didn’t smell. We eventually deduced that it was the foam that had the smell, not the wound. The nurse from the wound vac company (KCI) was here today and the first thing I brought up was the smell. She told me that it’s normal. Normal! She said that when the foam touches the drainage, it smells. So basically, live with it. Which is diffcult, because it makes me nauseous. I started piling on more tape to hold the smell in,which she says is fine, but it always seems to break through.

Now I’m even more reluctant to leave the house. As if having a tube attached to my body, coming out of my pants no less, with blood flowing through it wasn’t bad enough, now I’m constantly wreathed with the smell of shit. Attractive, right?

The second problem is that the pressure on the machine has been constantly fluctuating. This was a problem in the beginning, but we tracked it down to the nurse not making the hole in the plastic large enough before putting on the tube, so it was fine for a while. It’s possible that this new fluctuation problem has been due to too much foam being put in. With the KCI nurse looking on today and giving direction, my nurse used half the foam she normally does. So hopefully that will solve that.

Today we also changed the pressure from 125 to 150. (I’m not sure what units those are.) Also, we changed it from continues pressure to intermittant pressure. That means it goes on for 2 minutes, then off for a while, then back on for 2 minutes. This sucks – ha ha! I’m so funny! You get it? Sucks? Sucks? You get it? – because every time it turns on, it hurts. So I was shown how to change it back to continuous if I can’t take the intermittant anymore.

Hopefully, it’s only 2 more weeks with the wound vac. If it’s more than that, I may go insane.

There’s good news on the pathology report, though. It turns out that the pathologist was just being super descriptive. The tumors didn’t change into a form more likely to turn invasive. So hurray for that. Treatment remains the same, which is basically no treatment. Just vigilance and more surgery if they come back again.

First, let me say thanks for all your comments and good wishes. I usually reply to some comments by email, but something seems to have happened somewhere and I’m not getting comments sent to me by email*. But I’m reading all your comments and really appreciate them.

On Thursday, I went back to the doctor so he could check the wound.  While we were there, he discussed the final pathology report with us. Surprisingly to him, the cysts were not cysts and not benign. They were, in fact, a recurrence of the borderline tumors. No one was more shocked than my oncologist, because the growths he removed didn’t look like the previous tumors and the frozen section biopsied in the OR came back benign.

This is actually the second time the frozen section came back benign only to have the complete biopsy show a different story. That’s a fluke, of course, because the frozen section is taken at random, and it just happened that each time they took a section that contained benign tissue. The implications of this are dire for me if I have another recurrence, though, because next time, he clearly can’t trust the frozen section and has to just proceed as if it’s a return of the cancer. That means this was my last shot at preserving my ovary. Next time, it comes out, no questions asked.

And the thing is, since this is the second time this has come back, there’s a very high risk of it coming back again. To complicate matters, there was some ambiguity in the wording of the report. My original tumor – removed in March 2003 – was a serous papillary tumor, which is a borderline malignant tumor with a practically nil chance of turning into invasive cancer. The second time around – September 2004 – was the same type of tumor. This time, however, the pathologist wrote “focal micropapillary tumor.” (I may not have that exactly right, but it’s what I recall.) Apparently one of those words – focal or micro - means it would be the same type of tumor as the others, more or less, with an extremely low chance of becoming invasive cancer. The other word is a problem, though. (And I can’t remember which word he said meant which, and Scott and I each say the opposite.) The doctor said that recent studies have shown that borderline tumors with the other word have a much higher risk of recurrence and a higher risk of turning into invasive cancer.

So the fact that both words were used confuses the issue. He was presenting my case to his board yesterday and will be discussing it with the pathologist to get more information. He thinks the pathologist was just being extra descriptive, but is trying to get it cleared up so we know what’s what. Obviously, one type of tumor would require a lot more monitoring for me than the other.

He’s pleased with how the wound is healing, though, so that was a bright spot. He and the nurse seem to believe that it will be completely healed in just a couple of weeks. I find that difficult to believe, since it’s still so big, but I’m sure they know what they’re talking about.

*One of these days, I’ll get around to looking into that.

This has been a really diffcult recovery, which is why I haven’t really posted since the surgery. Today, I’m feeling well enough to sit at my desk long enough to post, though, so it’s time for an update.

The surgery was on December 17 and it went really well. It only took about 2 hours, which is fantastic. (First surgery, 6 years ago, was 7 hours and the second, 4 years ago, was 4 or 5 hours, so 2 is awesome.) The really terrific news is that the cysts really were cysts, not a return of the tumors! Dr. Holcomb talked to Scott while I was in recovery and said the biopsies came back clean, he saved the ovary, and we’re clear to do more IVF if we choose. I couldn’t have asked for a better result.

I had a hard time with the IV pain meds the next day and couldn’t keep any of the liquid diet down, but that eased up as soon as they took me off the IV and I started the percocet. Everything seemed to be going great until Thursday night, when I developed a fever. It wasn’t too high, so they gave me some Tylenol and took a urine sample to check for a UTI. That fever went away very quickly. That was a miserable night, though, because I was still on the IV pain meds and feeling so nauseous on top of being hot from the fever.

Unfortunately, that day they took the bandage off and a few hours later I looked at the incision and noticed that it was red and the skin around it was hot, which meant the incision was infected. They started me on IV antibiotics to control the infection, but the red area around the incision kept getting bigger. So on Saturday, my doctor started opening the incision to look for pus, which he unfortunately found. He had to open half the incision to clean out the infection and irrigate the wound. That sucked. Hard. That was followed with several more rounds of IV antibiotics, but I had another fever overnight that night. So on Sunday, my doctor ended up opening up the entire incision and found more infection. At this point, my nice, neat surgical incision had become a 10cm long, 5cm wide, 5cm deep wound. This wound has to heal from the inside, so they put in a wet-to-dry dressing to keep it open and prevent it from closing over and healing with an abscess.

Finally, on Monday, they set me up with a visiting nurse service for home and released me from the hospital. All told, I spent 6 days in the hospital, when I was expecting to spend 3. My doctor also ordered a wound vac, which came a few days later and has been on for 10 or 11 days, though we’ve had some problems with the nurses not setting it up right. (A topic for another post.)

As a result of the huge wound, this recovery has been the worst of the 3 surgeries. Ironic, because the surgery itself was the simplest. I’m still taking percocet for the pain, which is considerable. At this point after the previous surgeries, I was off pain meds. So healing is slow and my mobility is limited and I spend a lot of time reclined, but I’m getting a little better every day. The wound is down to 9.5cm long, 4cm wide, and 2.8cm deep, as of this morning, so it’s healing well. It looks absolutely HORRIBLE to me, but I’m assured by the nurses that it looks excellent. Beefy red is good, they tell me.

Scott’s staying home one more week to take care of me, which is really good, because I still need him. He goes back to work next Monday.

So that’s where I am. How’s your world?

Since going back to Dr. H and firing Dr. K, I remembered that I actually met Dr. K before. And I didn’t like him then, either.

After my first surgery, all I could eat was watermelon for a while. My stomach couldn’t handle anything else, but the watermelon was good because at least it kept me hydrated. After the second surgery, however, I was ravenously hungry and eating fried chicken the day after. Even though Dr. H had to repair a perforated bowel the day before. I felt really good and really hungry and I wanted fried chicken, so Scott said screw the hospital food and went and got me fried chicken.

When Dr. H came in and saw me with chicken, he said, “Good. You’re eating!” And that was that. But when he was off duty and Dr. K was making rounds for him, he was shocked. He called Dr. H to tattle on me, that I was eating fried chicken after a bowel perf, and Dr. H just told him, “She knows herself. If she feels like she can eat it, I’m going to let her eat it.”

I didn’t remember this until recently, after I fired Dr. K, but I wonder if it was in my subconscious when I had that consultation with him and was yet another thing that set up that visit to be adversarial right from the beginning.

Less than a week to go.

Today I’m really grateful for my mother. When I called her after my doctor appointment last week and told her that the surgery date was set, she asked if I wanted her to come up for the surgery. I asked, “Do you want to come?” And she replied, “It’s up to you, but if you want your mommy there, you’ll have your mommy there.”

And yeah, I really do want my mommy there. Even at nearly 39 years old, when I’m sick or hurt, I still want my mother. So she’s coming up on the 16th and will stay with us that night, then stay in a hotel near the hospital for a couple of days.

I’m really glad she’s coming, and so is Scott, who remembers how her presence during my first surgery helped keep him sane while they sat for 7 hours and waited for news. Hopefully they won’t be sitting with no news for that long this time, but if they are, it’s nice to know they’ll have each other to help keep calm during that time.

And even nicer to know that she’ll be there when I wake up in recovery.

That title describes my change in attitude after seeing my old oncologist last Thursday.

To refresh your memory, the other oncologist - Dr. K - said the cancer is back, and he just wanted to remove my remaining ovary and be done with it all. He said the cysts were too big to remove laprascopically. He basically poo-pooed my concerns about surgical menopause at such an early age and my concerns about taking HRT for so long. He was impossible to get information out of and I hated him.

He sent me into a month-long bout of sometimes serious depression, in which I was having a severe existential crisis and spent a lot of time wondering why there was even any point in continuing to live. I felt old. And I felt like a failure as a woman. And I felt scared and alone, because  my doctor didn’t seem to really care about me. I was hiding it fairly well most of the time, but the fact is, I was only getting out of bed in the morning by sheer force of will. I could easily have just spent the past month in bed.

Fast forward to my old oncologist, my original oncologist – Dr. H - whom I saw this past Thursday. He completely disagreed with Dr. K’s diagnosis. He was surprised, at first, to hear that I really didn’t like Dr. K and said that it was Dr. K who originally made him want to go into gyn oncology. I didn’t say it to Dr. H, but that surprised me, because I can’t see Dr. K inspiring anyone.

 When Scott and I walked into Dr. H’s office, he remembered us, even though it’s been 4 years since we last saw him. When we talked about the IVF as part of my medical history with my crappy ovaries, he asked about their success or lackthereof. When I said they were unsuccessful, he said he was sorry. And he was sincere.

r. H doesn’t think the cancer is back. His opinion is that we’re dealing with simple cysts. Non-functioning cysts, but cysts nonetheless. He has some small concerns about the fourth, smallest one, because of that debris, but he concurs with the original sonogram tech that it’s likely just old blood. He also thinks that, unless the biopsy in the OR surprises him and it shows cancer, there’s no reason to take out the ovary. He asked where we were with the IVF with regard to continuing, because he wanted to take that into consideration when he perfomed the surgery.

He cares about preserving my fertility. (Ha ha. Okay, stop laughing at the idea that I have any fertility at all. Seriously. Stop.)

And not just my fertility. He takes my concerns about surgical menopause seriously. We discussed at length the studies about prolonged HRT and the possible increased risk of breast cancer. His opinion is that the risk is lessened for a woman my age, because having estrogen in my body at 39 is natural, whereas the natural state for women of menopausal age is for there for be no esrogen. He believes it’s that unnaturally lengthened exposure to estrogen that raises the risk of breast cancer. So if I do end up on HRT, it would be gradually tapered off as I get older and closer to a natural age for menopause.

He has more concerns about progesterone than estrogen, so if it turns out that I have to lose the ovary, he’s recommending the removal of the uterus, as well. The reason for this is that you need to take progesterone as part of your HRT when there’s a uterus in place, so he would prefer to remove the uterus which would allow me to only take estrogen. But here he’s leaving the decision up to me, because of the possibility that we may try to use donor eggs. With no uterus, that would obviously be impossible.

So the surgery is 12/17 and I have an MRI on 11/26. The MRI will give us a better idea of what we’re dealing with, since MRI’s are very good at seeing cancer. Depending on the MRI results, currently only a cystectomy is planned. The cysts will be biopsied while I’m in the OR, and I’ve already given him permission to remove the ovary if any cancer cells show in the biopsy. I’m still considering my options about the uterus if it comes to that. If the biopsies do show cancer cells, he’ll also check some lymph nodes and possibly remove the rest of my omentum if he left any there the first time.

He was going to do it laprascopically, but Scott reminded him about the bowel perforation last time – which he would have discovered for himself later that evening when he reviewed my surgical records, which he took with him from Beth Israel – and he doesn’t want to risk another bowel perf or vascular damage. But there’s something else Dr. K was wrong about, since he said it couldn’t be done laprascopically. (Which, in retrospect, what did he know, since he doesn’t know how to do robotic surgery.) The good news is that he thinks he’ll only need about a 4-inch incision this time instead of the 7-inch incision he used the last two times.

To say that I’m more comfortable with Dr. H would be an absurd understatment. The relief that I’m feeling right now is palpable. Scott tells me that everything about my demeanor changed the second Dr. H started talking. It’s still possible I could wake up ovaryless, but now I know, with 100% certainty, that if that happens, it will be because Dr. H had to do it to protect my health, not because it was just easier for him that way.

If I could clone anyone in the world, it would be Dr. H. I would clone him and have each of his clones go into a different medical specialty so that everyone could have a doctor like this. He’s the absolute best.

And, one last thing, I think I’m going to like NewYork-Presbyterian Hospital better than Beth Israel. Beth Israel is a fine hospital, but NYP feels nicer.

Holy crap. Has it really been that long since my last post? So much has been going on. I keep thinking about writing things to post here, and then I never get around to writing them.

The most pressing thing going on is the diagnosis from the oncologist, whom I saw on Monday. It’s not pretty. It’s not particularly life-threatening, but it’s not pretty.

He thinks that, given my history, there’s a high likelihood that the cysts are, indeed, tumors. Or that at least one of them is. They’re definitely growing. The largest is now at 10cm, which is about 4 inches for those of you, like me, who don’t cotton to that fancy metric system. That’s big, and there are three of them. The other two are hardly smaller.

They’re large enough that I’m definitely feeling them now. I have some abdominal pain most of the time, and pressing on my abdomen hurts. The other day, I sneezed and peed a little, because they’re pressing on my bladder. Possible tumors or not, if they’re making me pee a little when I sneeze, it’s definitely time for them to go.

The problem with making them go away is two-fold. The first problem is that they’re too big to be removed laprascopically. They wouldn’t fit through the tube. So the surgery will have to be yet another laparotomy, with a third 7-inch vertical incision being added to the collection of two I already have on my belly. It just sucks. I don’t want to DO this again. I’ve been through it twice already and I know what to expect, but I’m still scared and I don’t want to do it.

The second problem is that this oncologist thinks there’s no point in even trying to save the ovary. He says he doubts there’s even any good ovarian tissue left, between the current cysts and the scarring and possible adhesions from the previous two surgeries. And he thinks it will just come back again if we leave the ovary, which means a fourth surgery.

I know he’s right. I do. But it sucks. It just really fucking sucks. I’m only 38. I don’t want to start menopause now. I wasn’t ready to give up the idea of using my own eggs for IVF, either.

The only bright spot is that he’s willing to leave my uterus and cervix, which means that I can still have the option of using donor eggs in the future.

Right now, surgery is scheduled for 12/4.

However, I didn’t really like this doctor. This was my first time meeting him, because the other doctor I was seeing left the practice between the time I had my last ultrasound and the time the results came in. (Nice, right? He didn’t even send out a letter.)  It’s not that the new guy is unkind or seems incompetent. There’s just something about him I didn’t like. I think it was that he wasn’t direct enough, and I felt like I was ripping his fingernails off one by one trying to get information out of him.

Now I want to go for a consultation with my original oncologist, who did my first two surgeries and with whom I am deeply in love. He left the practice while I didn’t need an oncologist and also stopped taking my insurance, but now I have different insurance and it turns out that he does accept the new one. So I’m trying to get an ASAP appointment with him, but his receptionist was out today.

I know the surgery is definite. It has to happen. The only question is do we try to save the ovary and who does the surgery. I want my original oncologist to do it, if I can ever get in to see him. The problem with him doing it is that he told me, straight out, that the next time he has to operate on me, he’s doing a hysterectomy. Ovary, uterus, cervix, and all. The original cancer was staged at IIIa, because he found a nodule on my colon. Given that and the fact that it keeps coming back, he’s probably going to want to go radical. If that’s the case, I don’t know if I still want him to do the surgery, but I like him so much.

So now I’m just trying to hold it together. I’m trying to fake being okay with it all in the hopes that I really will be okay with it all soon. It’s not working too well, but it’s only been a few days.

I finally, after several weeks, got around to calling the gyn-oncologist’s office back today. I think I put it off for so long because I knew I wasn’t going to be pleased with the news, so it was ostrich syndrome. The hope was that I would call and they’d say that yes, they’re just cysts, and it’s no problem to send a letter to the RE giving permission for them to be aspirated. But because I get very few things I hope for, that wasn’t the case.

The cysts grew between the two ultrasounds. There’s concern about the one with debris. He wants me to come in to discuss my options.

Meh.

So I go in on 10.13. I could have gone on 10.7, but I prefer Monday appointments. Yeah, it’s a long time to brood about it, but gyn-oncologists are in short supply even in NYC, and it’s tough to get an appointment sometimes. Since I’m in no danger of dying between now and 10.13, it’s fine.

Ovarian cancer is the 5th leading cause of cancer-related deaths among women in the United States. It has a frighteningly high mortality rate, because its symptoms are non-specific and it often isn’t caught until it’s very advanced. This year, over 20,000 American women will be diagnosed with ovarian cancer, and 15,000 American women will die from ovarian cancer.

The best way to protect yourself is to know the facts and know your body. The symptoms are vague, but there ARE symptoms:

- Abdominal pressure, fullness, swelling or bloating
- Urinary urgency
- Pelvic discomfort or pain
- Persistent indigestion, gas or nausea
- Unexplained changes in bowel habits, including diarrhea or constipation
- Changes in bladder habits, including a frequent need to urinate
- Loss of appetite
- Unexplained weight loss or gain
- Increased abdominal girth or clothes fitting tighter around your waist
- Pain during intercourse (dyspareunia)
- A persistent lack of energy
- Low back pain

Never second guess youself when you don’t feel right. The life you save could be your own.

For more information about ovarian cancer, visit the Ovarian Cancer National Alliance.