Tuesday, February 24, 2009

Learning Patience

So I guess an update is in order.

I saw my doctor on Thursday who at the time was still feeling this was a normal miscarriage. She did an in-office ultrasound which didn't really answer the if this is an intrauterine or ectopic pregnancy. She saw things that made her think it could be either.

Not very definitive.

So she had me do another round of blood tests to see where my beta-hCG levels were. If they were dropping quickly it sounds like a normal miscarriage. If they weren't we were back to thinking it is ectopic.

Blood drawn and waiting commences.

Friday 7am
I'm up, showered, dressed and about to head out the door to a crazy day at work when the phone rings. It's my doctor calling to say that my numbers did not drop, she is concerned the pregnancy is ectopic, she is in the OR all day but had a cancellation and would like to bring me in to do a D&C and then a possible laparoscopic surgery to look for and remove the pregnancy if she doesn't find it in the uterus. She asks, "Do you think you can make that happen today?" Even though my day is full of busy crazy important work, I say "I'll make it happen."
She assures me that my numbers have dropped so low that there is no way this pregnancy is viable even though they are not dropping anymore. They are in the 300's at this point, when they were in the 700's a week earlier and should have been doubling every 2-3 days.
I'm instructed to not eat or drink anything and to come in at noon to be prepped for surgery in the afternoon.
I email my boss to tell him what is happening and he is more than supportive. I try to do as much emailing and work as I can do as I am quickly getting more and more anxious.

Friday 11am
The Operating Room Admin calls to say that my doctor will no longer be able to do my procedure today and that she'll call me this afternoon when she gets out of surgery to talk about the next steps, but that I am clear to eat now.

More waiting....

Friday 12noon
My doctor calls another doctor who's nurse calls me to say that I need to go to the hospital imaging department to get an Ultrasound done at 1pm. There were no appointments available but they have been told I'm coming. I ask if I am to drink the requisite 32 oz of water to have a full bladder for the scan and she says just to drink a little. Usually OB ultrasounds are done by a different department, but the hospital imaging department does them when there is an emergency and I unfortunately know this because this will be my third. AWESOME!

Worry sets in

Friday 1:30pm
I drink a glass of water as we drive to the hospital and of course I get there and they say my bladder isn't full enough for the scan (BECAUSE I WAS TOLD NOT TO FILL IT!). So I chug the 32 oz and sit in the waiting room waiting for it to make its way down.

Friday 2:30pm
Scan commences. I chit chat with the technician about iPhones and such. We talk about all sorts of random things. I will say that all of the technicians are so nice there!
And now it's time for the OTHER part of this scan. I never talk during this part. It's just weird. But this part of the scan goes on, and on, and HURTS in certain spots. It's clear she is taking a lot of images of certain areas. This part took almost an hour. She reviewed the images with the radiologist who asked for more images... wee!
When all is done, the tech says I REALLY need to follow-up with my doctor.

I felt like crap after that ultrasound but to avoid the next step we went out to get some dinner. Eric was really hungry and we all needed a break from the craziness of the past few days. But now what?
Do I wait for my doctor to call me or do I call the on-call GYN to find out answer?
I opt to wait... it's a lot easier.

Friday 6pm
Phone rings and it is an anesthesiologist calling to say that she is putting me on the surgical board for Saturday at 1pm to make sure I don't get bumped again.
I haven't heard from anyone about my ultrasound yet. I haven't heard from my doctor about the next steps and I'm pretty sure she wouldn't be the one doing my procedure if I had it done on a Saturday. I'm totally confused.
Just in case, the anesthesiologist did the full pre-surgical interview.

I email my doctor just in case she checks it. I'm a little panicked and am not comfortable with someone else doing my surgery. I trust my doctor and don't want just anyone cutting into me.

Friday 6:30pm
I call the advise nurse who can contact the on-call gynecologist to find out the results of my ultrasound and who has hopefully been in contact with my doctor to know the plan.
With my insurance group I have to first talk to a non-medical rep in a call center and have to tell them my whole deal before they will transfer me to the advise nurse. Once I get to the advice nurse I have to tell it all again. The advise nurse finds out that the on-call GYN is familiar with my name and needs to review all of the reports and would call me in 30 minutes. She says that if I haven't heard anything by 8pm to call again.

Knowing that the on-call GYN knows my name is worrisome. So we continue waiting.

Friday 8pm
Still no call, so I have to make the call again.
Again I have to tell the whole story of the day... twice. Of course I don't get the same rep and nurse.
They tell me he'll call as soon as he can and to call back if he still hasn't called before I go to bed.

Waiting continues....

Friday sometime after 9pm
HE CALLS! Eric wants to know what he's saying and is brilliant and picks up the other phone to join in (I couldn't even think of such an idea my brain was swirling around too much)
Ultrasound results
It is still not clear if the pregnancy is intrauterine or ectopic. WHAT? They see something in both places (that's what we knew about the little in-office machine too). Ok great, no real answers.
While my doctor wanted to do the surgery to get definitive answers, she agreed with the on-call GYN that we should go the route of treating me with medication to end the pregnancy so we do not risk affecting my fertility more than needed. Either way, an ectopic pregnancy is a risk to my health so action had to happen right away.
Usually this drug is administered at the Chemo clinic because the drug is a low dose of chemo but the clinic is only open M-F and my doctor did not want to wait any longer. The doctors set it up that I would get the drug administered at the ER the next day. I had to wait until the main pharmacy was open so they could mix up the drug so 10am the next morning would be it.

Breathing still....

Saturday 8am
My Doctor calls to apologize for all of the drama, waiting and confusion of the day before and to talk to me about the findings, and the new plan and lets me ask all of my questions. She is clearly sick herself and I can hear the beeps of the ER in the background. I later learn she has another patient in there with a REAL emergency in the ER.
She advises that I not eat or drink anything just in case the surgery comes up again while in the ER.
Turns out she was in surgery all day the day before and was already scrubbed in when she found out I was being bumped from the surgical board. She then had issues with her remote access and couldn't look up my phone number to call me herself the night before. She called the on-call GYN and he said he'd do the calling.

Saturday 10am
We are back in the ER. Much of the same staff is there who were there when I was there the week before. Oddly comforting.
I'm prepared this time. I bring reading material. My iPhone is fully charged. I bring all of my prescriptions and copies of my EKGs from the previous week because the anesthesiologist couldn't find them in the system. Most importantly I bring a pair of really lovely fuzzy soft socks and a hoodie to put on over the backless gown. I had a feeling we would be doing a lot of waiting around.
I first need some blood work done to make sure my liver and kidneys are doing well and to get a beta-hCG level as a baseline for the post-injection blood work I'll get every few days until my levels are back to zero. They say I need a GOOD IV to get the injection so they want to do that to get the blood too.
My arms aren't so good for blood work and worse for IVs so a few nurses come in and out looking and smacking and then turning to get someone else. One nurse tries and fails but all of the other nurses won't poke without knowing they will get it. A few hours pass and they finally learn that I don't need the IV and that any ol'blood draw will do.
Finally it is time for the injection and the new on-call GYN comes in to do it. She's the only one certified to give a chemo injection on-call at the time. My doctor told me about her and that she had already talked to her about the plan. I ask even more questions and we talk about what to expect and she again reassures me that my beta-hCG levels definitely show a miscarriage and very likely an ectopic pregnancy. She makes sure I am ready and then its time for the shots.
IT BURNS and 4 days later it still hurts.

Now we are back to waiting. More blood work to see where my levels end up. If they don't go down then another set of shots and more waiting. If that doesn't work then we're back to scheduling surgery.

The last few days have been full of ups and downs and side effects. I've been home from work because I feel like crap and hurt physically, am extremely fatigued and admittedly emotionally not all together. Even the bit of work I've done has left me in tears. Thankfully I am feeling physically better tonight and am hoping the nausea I had last night doesn't return.
As I talked to my therapist about, this time is going to be emotionally and physically very different. At this moment it is feeling terribly harder and this time I don't know if I'm going to be strong enough to be as optimistic as I once was.


Starshine said...

Oh, Cherry, I can't believe how crazy and long this process has been. That is a lot of stress and frustration to add to what is already a sad and disappointing time.

I'm so sorry.

Sending you love and hugs.

Autumn's Mom said...

What a nightmare. I'm so sorry you are having to go through this again. I know you are trying to hold it together, I wish we could all make this easier for you. Lean on E, that's what he's there for. And us, when you can. I'm praying for you love. xoxo

J at www.jellyjules.com said...

Oh honey, I'm so sorry you're in so much pain right now, both physical and emotional. This whole things sucks so very badly. It is indeed a nightmare.

Please let me know if I can do anything...

Gina said...

Such an ordeal on top of an already painful thing!

I'm so sorry!

You are strong, Cherry. I would have had a nervous breakdown by this point.

Hugs, hugs, hugs!

Karen MEG said...

Cherry, what a frustrating, terrible ordeal! I'm so, so sorry that you're having to deal with all this pain and physical trauma while on an emotional roller coaster.

Hugs to you, my dear. You hang in there xoxo

C said...

Oh, Cherry! You've been through so much! What a roller coaster ride! Ditto to what Starshine, AM, J and everyone else said.

You have a great support network and you've got E there for you too.

If there's anything I can do for you in any little way possible from this end, just say the word.
Sending you lots of hugs.