We first want to say how much your kind and gentle words meant to both James and I after the last post! We were truly blown away (in a positive way of course)!
So now to continue on where we left off. . .
The 2 weeks in between my surgery and the post op visit went by relatively quick. My recovery was easy all things considered and was feeling optimistic and ready to take on whatever came next.
May 16, 2017
Today I went to visit Dr. Sanfilippo for my post op visit. I woke up ready to face the world. I got to the office early and was taken back quickly. One of the surgeons from my surgery came in to follow up and discuss next steps. We were sitting at the round office table in the exam room. From my past experience we only sat at the table when important matters needed to be discussed. I felt a lump forming in my throat as we sat. She shared that while I do not have Uterine Cancer we needed to put our infertility journey on hold because they were sending us to Oncology for treatment. (insert nauseous feeling) I shared with her that I was under the impression we only needed to get Oncology's blessing to continue not that I needed to be treated! As tears began to slowly well up in the corners of my eye she explained that "the estrogen and progesterone that you need to be placed on are miracle grow for per cancerous cells. We need the Oncologist's help in killing all of the bad uterine cells and retraining them to be non cancerous. After the treatment Oncology will redo a biopsy- If the biopsy is clear that we will continue with infertility treatments. If however, the biopsy is not cleared then your ability to physically carry your own child would be over as it is too high of a risk to both you and the babe." She continued talking but it felt as though I was underwater- Was I just told that I need to undergo cancer treatments AND that I may never carry my own child? How was I going to tell James? How was I going to tell our parents? How do you swallow this news? As I began to hear the surgeon speak more clearly she asked if I had any questions? The only thing I could say was "This is heavy. . ." She stopped and stared at me. It was a tender moment full of compassion and fear as she reached across the table and grabbed my hands that were clinched together and shaking on the table. She said "We will get through this- you will be a mother some how some way. Lets just focus on making sure that you are your best possible self" A few awkward seconds passed- still in shock and amazed that my mouth was able to so quickly ask "Assuming the biopsy is clear of bad cells- whats next?" She took a deep breath and said " We will need to move fast- We don't know if and how fast the cells or polyps may come back. We have a realistic window of 9 months once you are cleared from Oncology to get you pregnant" I asked "what happens if it comes back sooner? She replied "We start from surgery and do all of this all over again" With my mouth still unaware of everything that was just said it asks "So what are our options for getting pregnant? The surgeon took yet another deep breath and said "we can start with clomad. Its a pill that you take for 5 days after your cycle and try naturally to conceive. You can try up to 6 months but studies how shown that if it doesn't happen after 3 months it generally wont work. The odds of you getting pregnant are 5-8% with this option. Next would be IUI where you would still be taking the clomad for 5 days post cycle and then administer a trigger shot forcing ovulation 36 hours after. A small procedure would be done in the office where your husbands seaman is placed directly into your tube with the eggs. We wait 2 weeks and see if it takes. If this procedure does not happen after 3 attempts it generally does not work. The odds of you getting pregnant are 13-15%. The 3rd option is IVF. This option is full of daily meds and injections. On ovulation day- you would have a surgical procedure where we would harvest your eggs and marry them with the sperm in a lab. After 5 days embryos should of formed and we would have you come in for another office procedure where we place the embryo directly into your uterus and wait 2 weeks to see if it takes. The odds of you getting pregnant with the 1st cycle are 38%, 2nd cycle 58% and 3rd cycle 72%" my eye perked up with excitement- I liked those odds! She then said "each cycle cost between $15-$20K and is not covered by insurance" I thought to myself. . this day just keeps getting better! The surgeon then shared "For you to undergo any of these treatments my BMI needed to be under 50 which means you needed to be under 250 lbs" (minimum of 30 lbs to lose). At this point I had all of the news I could hear. The surgeon stepped out of the room to get the Oncology referral. I called James immediately to share the news. I was amazed that I kept it together while I shared our next steps. Before I could finish talking, Dr. Sanfilippo came into the room with the Oncology referral and I had to hang up. He suggested that I walk down and see Oncology on my way out and said that we would talk again in 3-6 months after I was cleared to return. So I did just that and was able to get an appointment for the following Monday.
The entire way home I ugly notebook cried- I called my parents and shared the news and I called James back and completely and utterly broke down. The rest of that day was slow and full of deep thoughts. Both James and I allowed each other to just feel whatever we felt and gave our relationship and ourselves permission to just steep. At that time, its what we both needed.
May 18 2017,
I have an underlying endocrine condition called Congenital Adrenal Hyperplasia that I was diagnosed with at 4- thats another story for another time. Today I had an appointment with the endocrinologist to bless my ability to undergo cancer treatments and ensure that the meds would not disrupt my disorder. At a high level- I was down 20 lbs form my last appointment in the fall, my sugar levels were up as were my thyroid levels and I needed to be put on meds. We talked about how stress can raise both levels and that the meds would not hurt the baby. If anything- they would increase my chances for getting pregnant. We would redo testing in July as it takes 6 weeks for the meds to fully penetrate my system to see if the dosage needed adjusted with an office follow up in Aug but I was cleared for treatment. The doctor encouraged me to join a gym and be active 30 min daily with a healthy diet. All and all a better appointment than Tuesday's visit but at this point I was raw. This was a heavy week for a number of reasons and I was just looking for the week to be over. But first. . I needed to join a gym.
May 22 2017,
Today was my first appointment with Oncology. I asked James to come with me to this appointment. As we sat in the waiting room to be taken back I felt the weight of the world on my shoulders. I saw Wonder Women after Wonder Woman walk in and out of the door with their head scarfs on. What was this treatment going to be? What was "next" going to look like? As my eyes began to well with tears the nurse called me back. We went through the normal song and dance of why I was here, whats my history etc. At one point the Doctor asked if I was a Doctor myself. I laughed and said no- we have just been through a lot recently. After a quick exam we got to see the Oncologist. He shared "Its good news- You have Complex Hyperplasia without Atypia. After treatment you have a 1-3% chance of getting uterine cancer. Had it been with Atypia after treatment your odds would of been 40% to develop uterine cancer." Finally- some good news! The oncologist shared "During a woman's monthly rhythm you start the each month producing Estrogen and then the middle of the month it switches over to Progesterone. The Estrogen is like a brick being stacked to form a wall inside of your uterus and then the progesterone come and fills that wall with mortar. If a baby makes it way into the uterus this brick wall strengthens and keeps the baby safe for 9 months. If no baby- the brick wall is knocked down and we start again next month. For you- you keep building brick wall after brick wall without any mortar and without the knocking down each month. In addition to that- your bricks arn't brick shape- they are triangular, not spaced or staggered correctly and are being held together with bubble gum instead of mortar" I stopped and look at him and said "so a drunk ill trained mason is building shitting brick walls inside of my uterus?" he laughed and said "Precisely! What I want to do is put you on a 6 month treatment of 4 pills daily- 2 in the AM and 2 in the PM. These pills will take this drunk ill trained mason and send him to the best masonry school so that your brick wall looks and is as strong as a brick wall should be. There's only 1 draw back- this is the same medication we give to patients undergoing chemo to boost their appetite" With my head cocked to the side I shared " But I need to lose weight not gain it!" The Oncologist said "This is going to be an uphill battle but its the only way" We finished the appointment and made a follow up appointment for the week of Thanksgiving.
If any of you know my sweet level headed husband you know that he is Mr. Positivity. On the ride home as I am furiously venting over the 6 month long treatment time (I was expecting 3 months) he kept pointing out all of the positives. "This is more time for us to save", "We can lose more weight", "We can work on our relationship and travel more", "We can still be parents to our bio kids- no doors have been closed" I was getting more and more pissed with each positive thing that came out of his mouth. I interrupted is positive parade and shouted "Can you be human for once? Can you be pissed off about what we have to do? What we are going thru? I feel like Im crazy for being pissed off at our circumstances!" James calmly and tenderly grabbed my hand and said "give yourself the day to be pissed off and then move past it because being pissed and frustrated doesn't change our situation or what we have to do. You might as well make the best of the ride"
We didn't talk until he got home from work that night. He knew I needed to again steep. When he walked in the door that night he offered to join the gym with me. He assured me that whenever I wanted to stop we could, if we wanted to adopt we could and that we would find the money somehow someway. If I wanted to carry my own children that we would stop at nothing.
June 1 2017
So here we stand- taking 10 pills daily for the next 6 months until we repeat the biopsy at the Oncologist. We are adhering to a low carb, low sugar, low fat diet and working out 4-5 times a week at the gym and tending our gardens and the house for physical activity the remainder of the week. We both joined book clubs for the summer, are striving to becoming minimalist and have some travel plans tentatively scheduled for the summer. Ill be 29 in just a fews days and while I had hoped to of been a mother by now- God has other plans. Some days are harder than others to swallow that reality but most days are above average. I still want nothing more than to be a mother. At my core it is what I was meant to do. Like most hard lessons I've been taught during my time on this earth- nothing worth having comes easily. We will get there eventually- we always do!
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