I took the week off of work. I haven’t enjoyed the crisp fall weather much this week. I’ve been keeping busy cleaning house and preparing for winter. The real reason I took off work was to lick my wounds. To re-group. To find myself. To find a purpose to get up every day. I’ve always had something I have been working toward. I’ve always been moving forward. Last week, though, I found that what I was working toward would never happen.
Three years ago, my husband and I started on the journey to becoming parents. It has been a journey. For anyone that has tried and not become pregnant within in months, it is painful. Every month, you are hopeful and pee on thousands of pregnancy sticks. Negative then you begin to menstruate. The disappointed combined with hormones is devastating. Month after month of this.
After a year of trying, my husband was first to get tested. Low sperm but it gets worse. He was also peeing frequently, very lethargic, and difficulty concentrating. Since he first went to a urologist, they wanted to check out his bladder. On an ultrasound, they found a mass which they suspected it could be cancer. We went from trying to have a family to my husband is going to be peeing into a bag or die. We had to wait a week for a biopsy. The best news was the day of the biopsy was that it was not cancerous. We are then referred to another doctor who then thought it was pituitary cancer (fuck cancer), so he got scheduled for a MRI in another few weeks. It also turned up negative. From there, our doctors sent us out of state (we live in Alaska) to a specialist in Seattle. This was the best thing that our doctors could have done. Six months from when he first saw a doctor, we were being sent to a specialist in Seattle. That may seem like a long time, but that medical reality, it is pretty quick.
At this point, they think it may be diabetes insipidus (not cancer!). The first day down there, they start the test. The doctor stops in about three hours in since it is clearly negative. Our hearts sink and the fear that we are never going to figure out what is going on sets in. We then spent an hour talking to the doctor. Talking and interacting with the doctor. This was amazing to us. The doctors in Alaska listened and knew something was wrong. They listened, tried to help, then sent us to someone that could help us. Then this specialist took the time to also listen. From this, he wanted my husband to undergo two more tests the next day, one for Addison’s disease and a second for a pituitary disorder. All these tests involve injecting you with a hormone or chemical and watching how your body reacts. According to my husband, it is not enjoyable.
My husband had a pituitary disorder – panhypopituitarism. His human growth hormone (hGH) level was zero. His pituitary is not making the hormones it needs which affects the downstream synthesis of hormones such as testosterone. Within a month he was on human growth hormone. He also needed to get on human chorionic gonadotropin (hCG) to bring up his testosterone. First, the insurance wouldn’t approve it since they claimed it was for fertility. The doctor and we argued with them. It is not as simple as giving him testosterone. One, testosterone would kill any fertility chances we had. Second, it would prevent his body from making other hormones. The hCG causes the production of luteinizing hormone (LH) and follicle-stimulating hormone (FSH) that go to make testosterone and estrogen. We figured while we argued with the insurance, we would pay out of pocket to get him started. The cost was around $500 for a 21 days supply. Even willing to pay, we could not get it. A generic was coming out, and so the pharmaceutical company had put it on limited supply. There were lots of phone calls to pharmacies, the pharmaceutical company, and our insurance over the next few months. Finally, four months after his diagnosis, he was on both hGH and hCG. Two months after he got on it, we got a call at 6 pm on a Friday night while we were on our way out of town. It was our in-town doctor. The generic of hCG was out and did we want him to do a prescription for it and send it in. YES! It went from $500 to $190 over night. Our insurance still won’t cover it. The reason now is that it is intramuscular injection which they don’t cover. If he went to the doctor 3x a week for the injection, it would be covered though it would be much more expensive for the insurance companies. My disdain for health insurance and pharmaceutical companies levels grew tremendously during this time.
To make a very long story shorter, we then did blood test after blood test while they tweaked his meds to his hormone levels on target while managing a wide range of miserable side effects such as breast growth (too much estrogen), horrible swelling (fluid retention), etc. New meds got added and tweaked. We continue to do this. It is a forever thing. We also continue to battle the insurance company. Sometimes we have a small victory; sometimes we don’t.
We start to try again for a baby. It is like the first year all over again. Month after month of disappointment. His sperm count was still too low. We finally see a fertility specialist in Portland. We skipped over the Clomid (induce ovulation) and IUI (placing sperm in the uterus, so they don’t have to swim so far) that most people do and go straight for IVF with ICSI (remove eggs and physically inject those eggs with sperm). It is the ultimate last resort. We figured it would be a breeze. Yay science! In January, I started to inject hormones into myself right next to my husband that injects hormones into himself. Talk about romance. The first part of February, we fly to Portland to make a baby! I have 33 eggs which is a lot, but we figured we could make all the babies we want to complete out our family! The doctor warns that with this many, I may overstimulate (OHSS). They harvest the eggs, and I start to swell. They were able to fertilize 21 of those eggs. Yes! By day two, I look like I’m four months pregnant. I have to go and buy maternity pants. I’m miserable. I sleep in a recliner and barely move except to take the puppy out. Yes, we got an IVF puppy while down there. My husband has to go back to work shortly after his part was done. I hang out in Portland with my brother and sister-in-law with a puppy waiting for the transfer. Then the bad news starts to roll in, one crushing blow after the other. The eggs are not developing like they should. By the day of transfer, we only have two embryos. My transfer is canceled due to the OHSS, and my two embryos are frozen. I fly home. This wasn’t as easy as we thought it would be.
In April, I start progesterone in oil injections in my ass. Most painful shot ever, given daily. I fly down for the transfer. One embryo did not thaw correctly, so that leaves one. They stick it in, and we wait for my blood test in a little over a week. It is negative, and I leave work to go home and cry.
We opt to try IVF again in August. The doctor has put me on metformin to see if that would improve egg quality and a modified IVF protocol to prevent OHSS. For the most part, I’m fine on this med though it sometimes causes horrible diarrhea. In July, I start the hormones and we then fly to Portland again. They harvest 16 eggs, and 13 fertilize. I do not develop OHSS, and we can enjoy our time in Portland while our embryos grow. It is looking up! We visit my aunt and uncle. We pick fruit. We hike. My husband flies home, and two days later I go in for a transfer. We only have one that is ready and the rest they are not sure of. We transfer the one that is ready and two that are not quite ready but may develop. If we waited, it would be too late for the good one. The next day, I go in for my progesterone shots (my husband does them normally, but the clinic does them when he is out of town). None of the embryos made it. They all arrested or did not have the morula when they became a blastocyst. My doctor suggested chromosomal testing which I find pointless. If it is a chromosomal issue, we cannot go and correct it. There is no fix. He then suggested IUI with a sperm donor. Going into this, we agreed that we would only use our sperm and eggs. After the transfer, I start to develop OHSS.
I go home to cry and hope that the one embryo makes it. We just need one. A week later, I get my blood test done and we are prepared for the worst. My beta number is 10. It is low but sometimes a low one works out. But often it does not. I have to go back in two days later for testing. For those that think the two-week wait is bad, try the two day wait for the second beta test. Longest two days in history. It came back as a four. I packed up stuff at work and went home. My husband and I curled up in bed and cried. Later that night, I emailed my boss and co-worker. I was taking a week off because I found out that we were not pregnant, and we would never be pregnant. I needed time to process it all and not see anyone. That is how I ended up with a week off to clean house and to think.
My husband and I are going to work on us for a bit. Try to get back to us three years ago before all of this. While we have been together for seven years, we have only been married a little over three. Yes, this has been our first three years of marriage.
I know some of you are screaming at your computer through all of this, “just adopt”. You don’t just adopt. Adoption costs more than IVF. Adoption should not be for those that are infertile. Oh, you can’t make a baby, just buy one. Why don’t fertile people adopt? Why is that always the first option for those that are infertile? Do people think that maybe we’d like to have the experience of being pregnant and giving birth too? For our children to have our hair, our eyes, or mitochondria? It is a very personal choice and is not a just. It can take from six months to six years to adopt an infant. It costs $20,000 to $50,000 for a healthy infant. Older children and those with special needs are discounted. It is a horrible system. You can have a match, get to know the birthparents, prepare the nursery, spend all kinds of money, and after the birthparents give birth, they can opt to parent. It happens. It is understandable but devastating. It is like getting off the infertile rollercoaster and hoping on the adoption rollercoaster. Neither are Space Mountain kind of fun.
For right now, we are going to work on us. We are going to try to emotionally prepare for winter. We are in Alaska – it is going to get dark and cold here very soon with that comes depression. I know it is going to be bad this winter because of the finality of our infertility. I will never be pregnant. I will never give birth. I may never be a mother. So for now, I’m going to be selfish and I’m going to focus on me for a bit. And we are going to focus on us.
The first step was to unplug from Facebook. A constant reminder that we are the only ones struggling with life. Facebook is filled with all my fertile friends with their perfect babies and perfect lives. I do not need that daily reminder. Best decision ever.
I have also started to look for marathons in sunny places in Feb. Motivation to get back to running and training for something. Moving toward something.
Last night, I did some sudoku with my cat in my lap, a glass of wine in my hand, the dogs sleeping about, and the fire going. It was glorious.
I am taking life right now one day at a time. One day, I hopefully will get back to a place where I love life again because right now, it really sucks (that is putting it mildly).
Oh, and stop asking people when are they going to make babies.