Countdown to my ovarian surgery

WEBSITE COUNTDOWN

Well - it's just a matter of time now. I have my date for my surgery. I don't have too much to report really. I'm just kind of eager to get it done. I know that I'm counting down to a surgery but it also feels like I'm counting down to finally having a real answer. I have decided not to dwell too much on whether this is cancer or not. It might be - it might not be - but there's nothing I can do about it. So all I can do is wait. In the meanwhile I'm focusing on far more interesting things - like my daughter's first birthday party, our upcoming vacation, and work. I will probably have more to share as the date gets closer.

It's time to go under the robotic knife

Wow... this is really happening. I know it's been a couple of months where I've been wondering, but in the back of my head, I kind of hoped it was a fluke. I hoped that the dark spot we saw on the ultrasound was just some kind of mistake. Yet today, my oncologist's office finally called back with the MRI results - and they confirmed that the mass was really there. Ugh! So now it's time for me to come to terms with the reality that I'm going in for a real surgery.

It's time to come to terms with some ideas.... like I might actually have cancer. I may wake up from that surgery without my ovaries. I may wake up from that surgery with even more cut out of me. My daughter's birthday is coming up and I'm wondering how I'm supposed to do her birthday party. My running is just getting good again - and I'll have to give it up for several weeks again.

I'm really frustrated because although my gynecological oncologist is extremely experienced in the Davinci method for this type of ovarian surgery, his office takes way too long to return phone calls for my taste. I asked my reproductive endocrinologist to refer me to some other ones, but when I googled those doctors, the feedback was worse than the doctor I have now! Fortunately most of the feedback was complaining about the bedside manner and waiting times, but sheesh. This is nothing like my experience when I was TTC. There my doctors called back 7 days a week without fail.  But I need to decide soon. I'm so ready to get this mass out of me.

I'm feeling a sense of relief. Before I had this unknown cloud hanging over my head. I didn't know if I was sick so I didn't know how to proceed. This isn't the outcome I wanted, but now that I know.... I am ready to get my head in the fight. I go back to focusing everything in my power to getting through this healthy and mentally sound. I still feel like I've been on the medical battlefield for so long, that I'm not entirely freaked out about it. In fact, I'm ready for it. I'm ready to simply do what it takes to get the all-clear so I can get back to my life. Sigh......

MRI Done... now we wait to see if my ovary is screwed

I now understand why people freak out over MRIs. I had my first one done today to try and determine if this mass on my ovary is really there or not. First let me say - the hospital I went to - Kennestone Outpatient Pavilion is just amazing. It looks like a hotel. I'm not used to seeing hospitals that look like hotels - but no complaint here. I figured I'd write about my experience.

So my check in was pretty straight forward. I went into the waiting room after checking in. The tech came to get me and brought me to a changing room. She explained how I would undress and get dressed for the MRI. She then asked me to explain my medical situation so that she could plan how best to do the scan. After we got that done, I got into some scrub bottoms and that dreaded hospital robe that is open in the back. She moved me over to a private area and put me on a bed while she confirmed my  profile information. Then she put my IV in. She explained that I would be doing my MRI with and without contrast.

She asked me if I was pregnant or nursing. She said I needed to pump and dump for 24 hours. That's another whole long story , but I explained to her that I couldn't pump and dump because I don't respond to the pump. She promised to talk to the radiologist to see what options I had. She got my IV in easily - YES!!! That almost never happens! As she was doing it - I was looking at my arms and they are starting to have that haggard look they got during IVF when I was having blood drawn daily.

So they had me walk into the MRI room, and I got my first look at it. Now I'm not a claustrophobic person, but that machine does look intimidating. They got me to lay down on the table and got started setting me up. They stuck that wedge under my knees, connected me to the IV machine, put a bulb in my hand, put ear plugs in my ears and put headphones on my ears. They let me choose what radio station I wanted to listed to. We had some random banter about how gorgeous Alex Skaarsgard ( aka Eric from True Blood) is. The tech reminded me that if I needed to stop the process, the bulb in my hand was an emergency shut off.

Then I relaxed and they started sliding me into the machine. I had my eyes open - and I honestly wondered why I chose to do so. I'm not claustrophobic but I felt a twinge of anxiety as they slid me into the machine. My nose was just a few tiny inches from the tube. I heard the tech over the headphones tell me they were going to start. As I laid there, the digital clanking sound began. It really is loud and it is repetitive. It actually gets pretty annoying after a while. I kept trying to focus on the music but it simply wasn't loud enough to drown out the machine. As I was lying in there - I realized I was losing any sense of time in there.

After some time, the tech told me it was time to start the breathing portions of the scan. She would have me take a deep breath, exhale, and then hold my empty lungs still until she told me to breathe again. We did that about 10 times. Finally - she told me - it's time for part two of the scan. They would be turning on the contrast dye in my IV. She reminded me that my arm might feel a bit cold and I may get a strange taste in my mouth. I barely felt the fluid going in, but all of a sudden I felt like I had dipped my tongue in a bottle of perfume. For an instant I wondered if I was going to taste that for the rest of the scan - but it wore off.

So back to the clanking and waiting Funny thing, if you lay still for long enough, it's like your body locks into that position. I felt heavy. My arms and legs were heavy and it started to feel impossible to move. It was very easy to stay dead still. Finally I heard the tech on the headphones say it was over. She came over and started unhooking me from the IV. I asked her the dreaded question, "Did you see anything extra in there?" Her response was, "They train us to have a poker face - we can't say anything. Your doctor will have to follow up." Of course I knew she wouldn't tell me, but I couldn't resist telling her. The rest of my visit was pretty straight forward. I went back to my locker, got my clothes, got dressed and headed out to meet my husband for lunch.

It is kind of hard not to think about this stuff. Yes I'm in a good mood, and I at least don't feel sickly. Yet I am just dying to find out if I am sick or not.  Now all that's left is to wait for a call from my oncologist to see what he thinks of my results. Fingers crossed..... I can't believe it's been since April that I've been dealing with this. I'm so ready to get some definitive answer about whether I need to gear up for battle or not!

The bittersweet taste of being an infertile mother

These questions were posted on the PAIL blogroll. I didn't realize I was going to have so much to say, but when i finally stopped typing - I realized I had an emotional exhale. So I decided to post it here too.


What does the “after” feel like to you? Is it bittersweet, or are you at peace?

It’s extremely bittersweet for me. I mean I’m happy that I’m a mother, but I still have this nagging sense that I’m less than a whole woman. When I was trying – all I thought was – I want to be a mother, who cares how I get there? But once I crossed the line, I was happy I got there, but I felt like I’d been cheated of some of my motherhood experiences. I still can’t conceive on my own. I’m still traumatized from the physical torture it was to get to this point. I can still taste the constant anxiety and fear as I went through my high risk pregnancy. I remember my guilt for feeling disconnected from my pregnancy until I was literally at the end of the 3rd trimester. I couldn’t allow myself to enjoy nesting because I’d already lost a baby at 20 weeks once before. I’m not an unhappy person – but I don’t think I’d go so far as to say I’m at peace….


Do you still experience negative emotions surrounding your ALI journey? Did you expect this?

I definitely still have those negative emotions. They are strongest when I think of gearing up to try and have a second child. I do have some internal resentment because I know I’ll never have a normal road to motherhood. I don’t think I expected to feel this way. I thought that when I laid eyes on my daughter – all the negative feelings would just disappear.


You know – I’ve heard people tell me, “you should be happy that you have a child – if I had one – I’d never complain. I’d never be negative because I’d be so grateful for what I had.” I think that’s far easier said than done. The TTC battle does some serious emotional damage, and the addition of a child doesn’t negate that. If anything it makes it harder to accept, because you feel like you shouldn’t feel bad, so it’s harder to work through those emotions.


Williams discusses feeling like a veteran versus a survivor. What is your take on this, as it relates to the ALI journey? Do you think of yourself in some other way?

I definitely see myself as a veteran – or in my eyes – a warrior because the fight just isn’t over yet. To me – being a survivor would mean getting my body to the point of being fully fertile on its own. But the reality is that I’m always going to have to fight to try and get / keep my reproductive system in order – so unless some miracle happens – I’ll never really be a survivor – because the fight will never be over. I think when we’re still TTC – we feel like finally having a kid will make all of this over. I also shared that sentiment until I had a child – and I realized that the pains of infertility, miscarriage, and the TTC process have left scars that will be there with me forever.


How can we help each other get “there”? What will healing look like?

I think vocalizing how we feel helps a lot. It sort of makes this thing we’re going through a part of life instead of a dirty little secret we’re holding deep inside. When I lost my first baby, just hearing the number of women who also went through the same thing made it easier to deal with. When I got diagnosed with PCOS, just hearing the stories of women with PCOS helped. When I went through my pregnancy with an incompetent cervix, just talking to women who dealt with it to just helped. The healing for me is realizing I’m one of many women who have dealt with this – and come out ok on the other side.

I didn't realize genuine caring doctors still existed

So I reached out to my fertility specialist ( reproductive endocrinologist - aka RE). I got a call back from them, and they wanted a full run down of my situation. They asked me to send my information to them, and to get all of my other doctors to send my test results over too so they could analyze. They offered to provide me with soem questions to ask my oncologist. They are also going to give me their opinion on my wedging. I still have 17 snowbabies in the freezer - so I do have some options. What blew me away is that they are doing all this without sending me a bill yet. In fact, I'm just thrilled that they were willing to speak to me without charging me for a consult. I was terribly grateful to them for all of the supportive care I got when going through my cycles - and this is just more proof to me that they simply rock.

I'm 3 days away from my MRI and hopefully some more results on my situation. I just can't wait to find out if I am sick or not.

I gave up 9 vials of blood for the fight today

So the endocrinologist ordered all kinds of tests for me. She did say she was doing a full workup. The first test I had to do was a cortisol saliva test. We spoke a bit about it - but she just mentioned that it measures adrenal function. It was a weird test. I was given a specific type of swap that I had to drop in my mouth, roll around to soak in saliva, and then spit back into the tube. I had to do that at midnight on the night before I went back in for testing.

I did the test last night. This morning I went in for my bloodwork. It had to be fasting - so I hadn't eaten since about 6 pm the night before.... ugh. When I did IVF I felt like a pin cushion. When I was pregnant I felt like a pin cushion. After today - I felt like a pin cushion again. The nurse withdrew 9 vials of blood from me. Fortunately needles don't bother me at all - but it's always unsettling to see that much blood being taken. Now I just count down to next week Friday for my MRI.


On a happier note, I realize I haven't blogged too much about my sweet baby girl. She's such a force to be reckoned with. She started walking at 8 months, and now at almost 11 months she's more than mobile. It's kind of bittersweet to look at her and enjoy the moments with her with this cloud of questionable cancer floating over my head. She has no idea of what I'm going through - and I'm making special effort not to let worry creep into my demeanor. It kind of makes me feel that much more grateful for the times I have with her. Despite the fact that she bites my left nipple whenever I offer it to her to feed!! And she has some serious teeth to do so with hehe.

I'm also planning her birthday party in the middle of all of this.  It's so hard to believe she will be 1 year old soon enough. I'm so ready to start trying again but I need to know if I'm healthy or if I'll need to go under the knife. I'm sorry that today's post is so all over the place  - I guess my thoughts are just racing today....

Here's the one thought that grounded me today: