The Next Step

We have been cleared to take the next step – IVF! I am excited (and anxious) about it.

The day we found out the good news I immediately called our fertility doctor (and started prenatal vitamins). She was out of the office that day but we came up with a plan the very next day. I stopped the megace right away and started on a progesterone only birth control pill (ironic, right?). They gave me a tentative IVF schedule, to start right away.

We go in tomorrow to go over all kinds of things.

1. We both have to have infectious disease bloodwork. Apparently when they are going to freeze your embryos they have to confirm that you don’t have HIV or hepatitis C every 6 months.

2. We have to pay…  At least we can pay by credit card and get lots of miles?  (finding the silver lining)

3. I will have a mock embryo transfer done. They use ultrasound and put a catheter in the uterus to look at its size and shape. Apparently this makes it easier for them on the day of embryo transfer and possibly more successful?

4. They will give us some instructions on injections. I think this is going to be my hubby’s job. I can draw up the meds just fine but I think sticking me with needles will be up to him.

5. We will pick up thousands of dollars worth of donated medications that they will give us because our insurance will not cover IVF at all.  Wonderful news.

6. We will sign the IVF consent forms. Holy cow.

More about IVF consent forms… First of all, the consent form is 23 pages long. It goes over risks of every part of the IVF protocols – the medications, the procedures, potential risks to the baby, risks of multiple birth, legal and ethical implications of freezing embryos, etc, etc, etc. We have both read (and initialed) every page.

My husband and I had to have some very serious conversations – things that we never thought we would have to discuss. “Even though we will never get divorced, just in case for some horrible reason we do, what do we do with our frozen embryos?”  “If one of us dies, what do we do with our frozen embryos?” “If we are not going to have more children but have embryos left, what do we do with our frozen embryos? Do we donate them to another couple struggling with infertility? Do we donate them to research? Do we destroy them?”  Heavy stuff…

But, here we go – the next step!

I'm a Survivor

I got an interesting piece of mail today from my doctor's (my original gyn-onc) office. It surprised me and honestly brought tears.

It was an invitation to a celebration of National Cancer Survivors Day.

I guess I hadn't really thought of myself as a survivor. I mean I didn't have chemo or radiation or have a big surgery to get rid of body parts or lose my hair.

But, my life was turned upside down for the past 14 months. I made it through 14 months of hormonal therapy that transformed my body. I made it through 5 minor surgeries under general anesthesia. I put my career on hold and prioritized my family - the one that I have now and my future, potential family.

I went from carcinoma to complex hyperplasia with atypia to complex hyperplasia without atypia to atypical proliferation to normal endometrium!

So I guess I really am a survivor. And that should be celebrated, whether my husband and I go to the party at the cancer center or just out to dinner together.

National Cancer Survivors Day is Sunday, June 3. Congratulate your friends and family who have survived, the ones who heard that word, cancer, and made it through, both physically and emotionally. And remember the ones who didn’t…

Great News!

I just heard the great news. The pathology came back as normal! There is no more atypia or hyperplasia. My gyn-onc has cleared us to start IVF right away.

We have waited so long to hear this! I definitely started crying on the phone with the nurse at my doctor’s office this morning and again when I gave my hubby the news.

I don’t know what the exact process will be yet (Can I stop the megace now? Please… How soon can we get started?), but you can bet I will find out soon. I already left a message for our infertility specialist and can’t wait to hear from her.

So I think we will pop open a bottle of expensive wine from our trip to Napa and celebrate tonight. Hopefully I won’t be able to drink it a few months from now so here goes!

Thank you all again for your love and support through this LONG process. And please keep it up – the next step will be quite challenging as well.

Uncertainty

Other than the IUD debacle, the past few months have been full of megace, research, lots of spinning classes, some fun trips, decorating our new house, waiting for my next D&C, and uncertainty. I am still trying to eat well, exercising lots, going to acupuncture, and meditating. Sadly, I gained the 7 pounds back. Oh well – there are worse things, right?

I basically feel like life is totally up in the air right now. Depending on the results of the next D&C, we could be starting IVF, continuing megace, or we could be potentially preparing for a hysterectomy. I am mentally preparing for any possibility but I try to be positive. And that means thinking about IVF – even in the back of my mind. In February, we met with our original fertility specialist – the one who made the cancer diagnosis. We are planning to use her clinic for our “fertility needs.” She is prepared to start as soon as we are ready and will work with my new gyn-onc.

So if we are going to start IVF, that means being in town for the process, which can take months. And if I am able to get pregnant, I will be high risk and we will be super nervous about everything, which means we will not want to travel. I am planning bachelorette parties and getting invited to weddings that I do not know if I will be able to attend. If I am not, it will be for a great reason, and everyone understands that – but it is really difficult to not know what is coming down the pipeline. Honestly, it feels like the past 14 months have just been a waiting game.  I guess I should be used to it by now.

In case I am not going to be traveling in the near future, I just went on a few fun trips. My husband and I had a blast visiting his family in Vancouver for Easter. And then my four college roomies flew me out to San Francisco to visit them and celebrate my 30^th birthday (which isn’t until September, I swear!). I highly suggest biking across the Golden Gate Bridge! 

So I flew cross country twice in April!  It was a great distraction leading up to my April 26 surgery. Yep – I had one last Thursday. My doctor should be calling with the results any day now… 

This procedure was at a new hospital, with a new doctor, without a hand-picked anesthesiologist but everything went just fine. It was really nice to not see my colleagues all over the surgical areas. I think I was more tired after this one than the last but nothing a few naps couldn’t fix.

Sorry if this post was just full of random thoughts but they were ones I wanted to share. I will update with the results of my surgery when I have them.

The IUD

Once again, I feel like I have been through a lot…

My new doctor suggested that we think about trying the mirena IUD since I have had so many side effects from the oral form of progesterone, megace (30+ pounds up, heartburn, etc, etc.). He thought that it was equally effective but without the systemic side effects because it puts the progesterone directly into the uterus, right where it needs to go.  That sounded awesome to me.

Hubby and I discussed it and decided it was worth trying. We were a little hesitant because we knew that the megace has been (slowly) working and we didn’t want to jeopardize that. But the prospect of going off megace while still using something equally effective was enticing. So we decided to try it. I even thought I could lose some weight, get rid of some of the side effects (and the medications to treat them) before my next surgery and be more healthy before potentially starting IVF. 

Honestly, I was really excited about the IUD.  I mean, I would basically be like a normal person on birth control. I know lots of people with the mirena!

My doctor has a nurse practitioner in his office who has put in thousands of IUDs so she was the one to do it. I had it put in on a Thursday. That was definitely not the most comfortable thing but it was quick so not a big deal. I had BAD cramps afterward but they said that can be expected for a week or so. 

For the next week the cramps weren’t too bad but after that, they just seemed to get worse and worse. I am not a stranger to cramps so I knew this was bad - before I was diagnosed my period has gotten really awful and I had horrible cramps constantly. A week after I got the IUD, I was out of town at a resort in Florida for a family reunion weekend, and I could barely function without continuous high doses of motrin. I called the doctor’s office and they recommended I come in to be seen when I got home and again said that cramping can be normal. 

On Tuesday, a week and a half after I got the IUD, I saw the nurse practitioner again. The IUD looked like it was in the right place so she wanted me to hang in there for a few days. If it didn’t get better she would do an ultrasound on Friday to verify that it was in the correct spot (where else could it be?). On Thursday it was still BAD so I scheduled an ultrasound for Friday. On Friday, I woke up in such horrible pain that I couldn’t even get out of bed. I took multiple medications and they didn’t even help. The doctor’s office decided to scrap the ultrasound and just take the thing out since I was so miserable. My husband left work and came home to drag me out of bed and drive me to the doctor.

The second they removed the thing I felt better. Not a single cramp afterward…  I think my uterus was just pissed, “what are you doing to me now?” The whole 2 weeks were pretty exhausting emotionally and physically.

So it was back to megace for a very disappointed patient. I did manage to lose 7 pounds in the 2 weeks that I was off the medication though...


P.S. One thing that I should add - this was not a normal reaction to an IUD. Most people tolerate them well. The NP who had put in thousands said that she had never had a patient with a reaction like mine.  Just my luck - I am special again. Who knows - could have been the megace, coming off the megace, the fact that my uterus is not normal...

My New Doc

I can’t believe it has been so long since I last blogged!  Once again, I am sorry… I will try to be better.  Now for some updates…

My husband and I chose to see a new gyn-onc. We first saw him at the beginning of February. He is in private practice, about an hour from home. My dad's colleague had heard good things about him and when I searched online I saw that he had AMAZING reviews from patients, which is rare. They praised not only his surgical skills, but his wonderful bedside manner. 

I am in the medical field and have worked with hundreds of different doctors. This doctor has the best bedside manner I have ever seen or experienced. Medical students could learn a lot from this guy. I felt more calm as soon as he walked in the room. The first thing he said to us (he had already reviewed my records) was “wow, you have been through a lot. How are you doing?” He was kind, sympathetic, answered all of our (many) questions. He even sensed that I had one more question as he was leaving the room and asked what it was…

And he is willing to be somewhat more flexible than my previous doctor. He agreed with what had been done so far. He even recommended that I continue the megace for 3 more months and have another D&C since there were still some atypical cells on the pathology and they saw more polyps at my last surgery. But one of the biggest differences is that once the pathology is “normal,” he will send us to do IVF immediately, without another 3 months of megace and another D&C like my original doctor planned.  Another smaller difference is that he does not have his patients stop taking the megace one week before a D&C like my doctor did. I wonder if this could have any effect on the pathology with one week without the hormonal therapy?

He also thought that the mirena IUD (puts progresterone into the uterus) was a good idea to try since I was having so many side effects from the oral version – my megace.

We also discussed a more long-term plan. Assuming that things improve and I am able to do IVF and I am able to get pregnant and I am able to deliver a baby… he would monitor me closely after delivery. I will likely need to be on either megace or have the IUD with D&Cs every few months. But, he did not feel that I would need a hysterectomy ASAP. As long as things are monitored and going fine he thought that we could do another round of IVF to have another kid if we wanted. And when we were done, I would have my hysterectomy. And he wouldn’t necessarily take my ovaries – another potentially good thing… 

So we were happy with these plans and chose to go with this doctor. I have to tell you that I am also extremely relieved to no longer be treated at the hospital where I work. It has been very stressful to have so many surgeries where I know all of the staff and see my colleagues everywhere as I roll by – awake and asleep.