i am a butterfly…

Posts Tagged ‘doctors’

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.

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.

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.

Two months after I got married, I was diagnosed with hyperthyroidism. I’d been suffering from it for quite some time, but I attributed it to the stress of wedding planning and just tried to ignore and hide the fact that I couldn’t hold my hands out in front of me without them shaking like I had Parkinson’s disease.

The thyroid disease – Grave’s disease is the actual disagnosis – was caught when I went to the doctor because I had hives. They covered my legs and my hands and I was starting to get them on my lips, making my mouth and chin numb and itchy at the same time. So I finally gave in and went to the doctor. During that visit, they noticed that my resting heart rate was 146. The doctor was shocked, and gave me an EKG on the spot, probably thinking my heart was going to explode.  My heart was fine, so he decided to do a thyroid test and discovered that my thyroid was completely out of whack.

In the flurry of dealing with the thyroid problem - which resulted in at least dozens appointments with an endocrinologist to get the thyroid under control and with my GP as various symptoms came up in response to the thyroid problem and its treatment – the hives got kind of lost. They prescribed Zyrtec, which I started taking religiously every night before bed, and gave me an Epi pen in case the hives ever caused anaphylaxis. Since the Zyrtec controlled the hives perfectly, everyone just sort of forgot about it.

The thing is, that was 9 years ago. I still take Zyrtect every night before bed, and the hives don’t come back. But I’ve noticed over the years that if I go without my Zyrtec for 2 days – always 2 days; 1 day is fine – I start to get really itchy. It usually starts in my hands, and within a few hours it’s in my hands, my lips,  my nose, my ears, and my back. Right now, the itchiness is starting to move into my legs.

My thyroid has been in control for years now. The Grave’s is in remission and I’m no longer on medication, though I’m due for a visit with my endocrinologist just to get a check up. So I don’t think the hives are related to the thyroid disease, and it was probably just a coincidence that they manifested at the same time. But I’m seriously allergic to something and I have no idea what. It started so suddently 9 years ago, and it’s weird that it’s never gone away.

I should probably see an allergist, but by this evening I’ll have a bottle of Zyrtec in the house again and will feel fine, and won’t think about it again until next time we run out of Zyrtec.

And it hasn’t even started yet.

I just called to make an appointment for the sonogram my oncologist wants. The earliest appointment they had was for the 8th. Great, said I, I’ll take it. But no, I realized, I start jury duty on the 7th, and it will be at least three days. So I had to make the appointment for the 14th, and just hope I don’t get picked for a jury.

The realization that I couldn’t take that songogram appointment on the 8th made me suddenly realized something else: guess when my new cycle is supposed to begin? If you picked May 8, you’re a winner!

That means I won’t be able to do any of the early cycle tests at the new IVF center, because I’ll be in the Bronx County courthouse all fucking day!

If I have to push these tests back yet another cycle. I’m going to be pissed.

I was shocked when I called the gyn-oncologist last week for an appointment and they gave me one for this Friday. Stunned.

And, of course, I had every reason to be so surprised and to expect what happened today: they left a message while I was at pottery to say that – guess what?! – Dr. G. won’t be in the office on Friday after all, so we have to reschedule my appointment.

Bleh.

Yesterday, I had a consultation with a new RE I’ll call Dr. Thorough.

His office shares a reception area with, and is associated with, a large acupuncture center. The center is decorated in a very zen way, with low wooden furniture, silk pillows, and Buddha heads. I loved it the minute I walked in.

Dr. Thorough is a very nice man and a, seemingly, very competent doctor. He went through my record carefully and even paid attention to my crackpot theory that my early puberty – first period at 9 or 10 years old – premature grey hair – beginning at the age of 19 – and infertility are somehow linked. He asked why I thought that, and I replied that it was just a weird feeling that maybe it all pointed to my body being older than my actual age. He didn’t think it was a crackpot theory at all, and agreed that it could be a possibility, and so I’m going to have a test called PlanAhead. It’s a blood test that checks levels of AMH, FSH, and Inhibin B and uses them to calculate ovarian reserve. It can’t tell what quality the eggs I have left are, but it can give us an idea if I’m starting to run low, which, since I only have the one ovary, is a pretty good thing to know.

The three cysts that showed on the ultrasound at Cornell are, of course, still there. I didn’t get the measurements, but I’m fairly certain I heard someone in the room at Cornell say “40mm” about one of them. That’s pretty large. Like the doctor at Cornell, Dr. Thorough thinks that, given my history, I really need to see my GYN-concologist and get his blessing before we go sticking more needles into the cysts, in case they end up being something more than cysts. So I have an appointment with the GYN-oncologist set up for next Friday. I suppose we’ll talk about a cystectomy and biopsy. While I’ll be happy to have the cysts or tumors or whatever they end up being removed surgically, I’ll tell you right now that I won’t consent to the possibility of another oophectomy or a hysterectomy until I’ve exhausted all my IVF resources. I simply won’t.

Unlike Dr. Italiano, who seemed to forget it was even an issue, Dr. Thorough takes the Grave’s Disease seriously. In the round of bloodwork to come, he’s going to be sure to check my thyroid function and he sent me information about auto-immune diseases and their impact on fertility.

That’s all the old stuff. I’m a complicated patient already, am I not?

The new thing is that he found what “appears to be a fibroid indenting on my uterine cavity.” No one has ever picked that up before, but I saw it very clearly on the scan when he pointed it out to me. What the hell? I think it may be a really new thing, because I’ve seen a lot of scans of my insides, and I’ve never noticed this thing before. As if I didn’t present enough challenges to an RE!

I really like Dr. Thorough, and he is now officially my new RE. The next step is to begin a series of tests, which include blood tests for:

• the PlanAhead test
• APA (antiphospholipid antibodies)
• ATA (antithyroid antibodies)
• NKa (Natural killer cell activation)
• RIP (Reproductive immunophenotype)

Also, Scott will have a thrombophilia panel – because of his Factor V Leiden mutation, I believe - and a Sperm DNA Integrity Assay (SDIA). I’m going to have a hysteroscopy to check out how my uterus is doing.

So many tests. I’m glad to be getting it done, though.