what a day — December 7, 2016

what a day

Yesterday was my oncologist appointment. I went in to work for a few hours before the appointment. Upon arriving to the busy office, I was prepared, having already completed my new patient paperwork. I waited just about 10 minutes before being called back for vitals. After that, I was escorted to an exam room to wait for Dr. S, who is the oncologist/hemotologist for the intralipid infusions. He came in to get some quick info, left to ask a questions and came back. It was a very quick appointment and he gave me a paper with doctor’s orders to take down to the nurses in the infusion room.

The room was full of hospital-type recliners and several had patients lounging while receiving their treatments. They are primarily giving chemotherapy at this location. I was called up by one of the nurses and they reviewed the protocol with me. It was explained that I would “brown bag” the IV, as their on-site compounding pharmacy did not have what was required for the protocol ordered by Dr. B in NY. I was asked to call my doctor to have the RX filled and then to call the nurses back to set up a time to come in.

Time is of the essence right now, as I began my estrogen pills and patches last week and needed to begin the infusion within the same week. I went to the parking lot and called my RE, who’s office was just across the street. After speaking with a nurse, she requested that I call NY to have them order the infusion, since they would know the exact formula. I called NY, but the IVF coordinator was not in the office at the time and would be calling be back around 3pm.

I was leading the adolescent group at 3 yesterday, therefore I had the other therapist join me so that he could take over while I took my phone call. At 3:40, I had not received a call. It was almost 5pm NY time, so I stepped out to follow up. The IVF coordinator was meeting with another patient, but knew I was waiting on the call from her and would be calling me back next. I received the call about 20 minutes later. I spoke to her and she said that as much as she would like to be able to call in the script for the infusion, she was unable to do so because she was in a different state and that technically they are consultants and not providing direct care over my case. She said they had worked with my doctor’s office before and had never really had a problem and directed me to call them back and if my doctor’s office needed anything from her, they could call her.

I called the nurse back and was transferred and on hold for about 15 minutes. I finally was able to speak to one of the nurses who said she would call in the script and would then call me right back. She called back about 15 minutes later. The other therapist had been in with what was supposed to be my group for 1.5 hours at this time while I was attempting to get this all straightened out. I had gone back in to let him know that he would need to finish group. I keep feeling guilty. I feel as though I am dumping my responsibilities on others. Others I work with have been trying to re-frame things for me and I agreed that if it was someone else going thru the same thing, I would help out, no questions asked…but it just feels different when its happening to you.

The nurse gave me a number to a woman with a home health pharmacy. The nurse was going to fax my records to this other woman, but suggested I go ahead and call her to find out how and when the infusion would happen. The home health lady told me that they would call back with a price the next day and that the nurses at this new location would call me to tell me what time to be at the appointment. With this particular infusion, they cannot do it at my house, they have to have me at their site. 

It was just before 6pm yesterday when I recieved the last call. It was the nurse from my doctor’s office letting me know that everything had been faxed and that I would get a call from them the next day. As crazy as this process is, I’m glad that it is an option and that we have been able to pursue all of this. Even though some days I feel like I might pull my hair out.  

Advertisements
immunology protocol — December 4, 2016

immunology protocol

I have been emailing the New York office since Wednesday. We have gone back and forth a few times. After my baseline appointment here in Houston on Wednesday, I made an appointment with an oncologist/hematologist Dr. G referred me to who will be administering the IV therapy. I will be meeting with him on Monday the 5th to review the protocol. Dr. S then contacted Dr. G to discuss my case.

I heard back from the ivf coordinator at the New York office on Friday and began to forward the emails to the nurses at the Houston office. On Wednesday, Dr. G began estrogen under the tongue 3x/day and an estrogen patch that is changed out every 3 days. The ivf coordinator sent the protocol. I was to begin Lovenox and prednisone with the estrogen on Wednesday, but we started it on Friday instead. The Lovenox is an injection 1x/day and the prednisone is a pill 2x/day. I’m also supposed to add Calcium 2x/day because the Lovenox and prednisone can weaken bones. Great.

Another injection was called in to a pharmacy in Massachusetts on Friday afternoon. This one is called Neupogen. It is to be administered 1x/day. This was an ordeal. I was at the salon for a trim and highlights (self-care is important) when I received a call from the Houston nurse telling me that she had contacted the pharmacy and that if I did not hear from them in the next 45 minutes, I was to call them. 45 minutes later, I was calling them. I was not on hold too long, but it took them a minute to find my script. We had to act quick. It was almost 6pm on the East coast and they had to get the order out to FedEx for a Saturday morning delivery.

This morning, we saw a FedEx truck drive by the house and I thought it was odd that it did not stop. An hour later I checked the tracking number and it said it had been delivered to its destination. It was not on our porch. I looked on all the porches in our cul de sac, but found nothing. It was about 50 degrees this morning and raining. I began to walk down our street and, 5 houses down, there was my package. It had my name and our address, but just at the wrong house. I knocked on the door to let them know I was taking a package off their porch, but no one answered. Just FYI…I may be on the Houston news in the next few days as a suspected package thief if the homeowners have cameras.

I was glad to have tracked down the delivery, as the medication was on ice and has to be refrigerated upon receipt. The hope is that the Neupogen will zero in on the immune disorders that may be contributing to my recurrent miscarriages. You can read more about that from the link two paragraphs up.

I’m still taking fish oil 4x/day, prenatal, baby aspirin, CoQ10, Vitamin D, and Deplin daily.

I am supposed to begin the IV intralipids  next week. This is what I’m going to the oncologist for. My immune system is hyperactive and the intralipids should help normalize things. This is for the Natural Killer cells. Each infusion will last over 2 hours. I saw the orders from the nurse in NY which included a home-health nurse coming to my house. I’d rather go in to the doctors office. Pepper barks like crazy when there is someone new around.

In addition to going in to Dr. G’s office weekly for blood work and ultrasounds, I will also go in for lab work next week once I have been taking Lovenox for a week for an anti-heparin xa level. This is to let them know if I am on a prophylactic dose of Lovenox. I have no idea what they are referring to in the previous sentences. I’m just really good at copying the info from the protocol email. Need a nurse friend to help me out there. The blood thinner will continue until a beta test.

And the last thing. I will also need to go to a lab for fatty acids blood work. I’m tired of typing. This is the 4th or 5th update today. Here is a link to the fatty acid thing.

Promise I’m done for today.

embaby update —

embaby update

I received the much anticipated phone call from my doctors office yesterday. They had the results of the 2 embryos that had been biopsied and sent to the lab for PGS testing. Of the two, just one was normal. Just like that we went from 4 retrieved, 2 biopsied, and 1 healthy.

This one will continue to be frozen, as we have our little boy that will be transferred later this month on the 21st. People have asked if we will transfer 2, but my doctor is very conservative and the fact that I have already had 2 transfers without a successful pregnancy means that we will just do one at a time.

I found out the gender of the baby. I was floored.

Its a girl.

Its perfect.

I feel like these two frozen, healthy embabies are already a part of our family. I called Husband and told him that we had one healthy and asked if he wanted to know. He said: If you know I want to know. I told him it was a girl and he responded: No way! That’s awesome!!

He was so cute.

I was texting a friend today and she said that there is nothing like a daddy/daughter relationship.

We have both always wanted a boy first and then a girl.

God truly knows the desires of our hearts.

anxiety —

anxiety

I had a panic attack Thursday. A full blown attack.

I was reviewing protocol, doctor appointments, and schedules with Husband on the phone as I drove to work.

Let me back up. From the moment I woke up, I felt off. I can’t really explain it, but it was not my normal. It was anxiety from the time I opened my eyes and stared at the ceiling that morning.

So, back to the drive to work…I was about a block away and I just started hyperventilating and became tearful. I told Husband: I think I’m having a panic attack. He told me to pull over. I didn’t. I was almost to the parking lot. Then I told him my head was all tingly. He asked where I was and I told him I was just pulling into a parking place. I was trembling, crying, rapid breathing, light-headed…all the symptoms I talk to my kids about.

Once I had calmed down and got off the phone with Husband, I called my boss, who was at a different location that day. She went through some breathing and visualization exercises with me. She told me to go to Starbucks. Caffeine was the last thing I needed, but I did call my mom. The crying began, but not a full blown thing again. I met her back at my house and we talked.

She had a meeting to get back to, so I chilled for a while at the house and then made my way back to the office. I had family group that night and already knew what I was going to do. Every time I thought I had regained my composure, something would set me off again. I gave instructions to my intern and the other adolescent therapist, apologized profusely, and then went to the grocery store to wander around in search of items I needed.

My mother in law came in to town for a meeting and was planning to stay at my house. We made dinner together, talked, and then watched Gilmore Girls together. It was exactly what I needed.

Work was much better on Friday.

I got the phone call we had been waiting for…

threes — December 3, 2016

threes

I turned 33 last week.

I was diagnosed with stage 3 endometriosis.

My thyroid level was in the 3 range and they want it below 2.5 for ivf.

I just completed my 3rd round of ivf and 3rd retrieval.

My tentative transfer date is 12/21 and if you add the ones and twos together, that makes two more threes. Stretching it? Yeah, that’s what I thought.

I think this is when I say: Third times a charm??

I hope so.

.

.

.

.

.

.

.

Husband is 36.  3 plus 6 is 9, which can be divided by 3 and then equals 3.

#icandothisallday #3ismynumber

thanks —

thanks

I have a lot to update. It has been a week since I last posted.

The plan is a series of posts today. Hang in there (she tells herself).  😉

We celebrated Thanksgiving here in the States last week. This was my year to be thankful for the kind acts of strangers. My sister and I were headed to my mom’s house and the guys were coming after us with the kids. We had to make a quick stop at the grocery store and as we were getting back into the car, Pepper ran out into the parking lot. I quickly went after her, leaving my sister behind.

Pepper had a great time running through the shopping center while I frantically chased after her. She was getting close to a busy street and I was really getting scared. The area we live has miles and miles of hike/bike/walking trails. As Pepper was running towards the street via the exit, a man suddenly appeared where the trail crosses. He was able to distract her by throwing a chip from the bag he was holding back toward the parking lot and away from the rushing cars.

I quickly thanked him and he continued on his walk with his bag-o-chips while I went racing after Pepper. By this time, my sister had joined in the chase as well. There was a nearby restaurant with an outdoor eating area that was surrounded by a fence. Pepper ended up trapping herself in that area and I was finally able to grab her and carry her back to the car.

As we were leaving the shopping center, I noticed that the local Starbucks was open. I mentioned what a shame it was as my car rolled over a speed bump. Just wait….

We made it to my mom’s house and I had this sneaking suspicion that my phone was not in the car with me. I looked for it everywhere. In my purse, all over the car, my pockets, but it did not take long for me to realize that it was in the parking lot. I still had adrenaline rushing through me from the incident with Pepper. I was a bit tearful about the stupid phone. I headed back to the parking lot, about 10 miles away.

I entered the parking lot the way I exited to back-track my steps. As I crept slowing along, I was soon back to that Starbucks where a woman and a teenage girl were waving me down. It was a bit bizarre, but I drove up next to them and asked if they had my phone. The teenager handed it to me and told me that had just walked up on it as it lay in the middle of the street, likely resting next to that speed bump I mentioned before. She said she was nervous when she picked it up, hoping that it was not broken. Sure enough, there is not a scratch on the phone. I thanked them several time and wished them a Happy Thanksgiving and made my way back to mom’s.

I called my sister told her I had my phone and couldn’t believe it. She shared with me that just after I left my mom’s house, the teen had come across the phone and saw a missed call, which had been from my sister when we were looking for it earlier. The girl swiped and called my sister and explained that they had found the phone and wanted to make sure it was returned. They waited at Starbucks for me and my sister had done such a great job describing what I was wearing and driving, that they knew it was me when I turned into the parking lot. Such a sweet girl with her grandmother!

I have a lot of other things to be grateful for this year. The referral to the Reproductive Immunologist and subsequent discovery of Endometriosis, a successful retrieval, finances to support this huge endeavor, and an amazing support system of family and friends. Despite having to add to the list of reasons we experience infertility, we now have a very specific protocol I will be following to ensure the best chance for a healthy pregnancy. I love my husband with all that I am and cannot wait until we have a child in our arms to love.

ivf cycle 3: embryo update — November 25, 2016

ivf cycle 3: embryo update

It has been busy around here as my sister arrived with her family from Africa on Wednesday and then spending more time with family Thanksgiving Day today. 

On Tuesday, day 5 after the retrieval, I received a phone call letting me know that of our 4 embabies, 2 were looking good and 2 were progressing more slowly than what they’d like. On Wednesday just before 5pm, I received another call that 2 of the embabies had reached the stage where they could be biopsied and frozen. When embryos reach this stage they are called blastocysts. Blastocysts are made up of at least 100 cells and is 0.1-0.2 mm in diameter. The other two embryos they were keeping an eye on had begun to regress. The rate of success for an embryo reaching blastocysts widely varies from 25-60%. 2 out of 4 is pretty good. I thought it would be 2-3 weeks before we received the DNA results, but I was happily surprised when I was told that she was hoping to hear back from the lab by next Friday December 2nd. 

Just wanted to give a quick update. It is 12:03 am as I write this, which means today is my 33rd birthday! It would be the best present ever to receive good reports on our 2 little ones next week. 

overwhelmed, in a good way — November 21, 2016

overwhelmed, in a good way

Support.

I can’t say enough how important it is. I have been blessed with friends, family, co-workers, Bible study leaders, my pastor and his wife, other ministers at our church, and near strangers who have offered support. And all of this happened in the last 24 hours.

I must have the best in-laws ever. Husband’s parents, siblings, and their spouses have all been amazing during this journey. His extended family has been pretty great too. Throughout the last few years I have received countless texts, messages on social media, phone calls, and hugs from many in his family. It has been so reassuring.

Rewind to yesterday. I am beyond excited for Husband’s sister and her husband who recently announced their pregnancy. Yesterday they had planned for a gender reveal. Now, I have never been to one of these before, so I was looking forward to it. My guess was a girl and husband’s was a boy. One of us was right and, of course, it was me. The smoke bomb was lit and pink smoke filled their backyard. Everyone was excited and we are looking forward to this sweet addition to our family.

But first, I had to work through some feelings. Don’t worry. I’ve already warned my sister in law this was coming. I got up and enjoyed a few cups of coffee. I lingered around the living room watching Dateline on demand and more time passed than I realized. As I was getting ready, I caught my reflection in the mirror. The four small scars across my waist from the incisions after the laparoscopic surgery in August jumped out at me as well as a few bruises around my belly button from the recent injections.

I told myself it was fine. That I would be fine. I drove the 45 minutes to their house, all the while contemplating this journey. I walked into the house and was quickly greeted by my family. I focused on my sweet nephew because smiling kiddos always help me feel better. My other sister in law has been a God-send, as she has faced and overcome her own struggle with infertility, while also coping with the devastating loss of her mother.

I feel like I may have been acting awkward or out of place, which is not especially out of the ordinary for me in a social setting. It was my sister in law who knew before I even did that although this is a happy day, it was also kind of sad for me. She pulled me aside, telling me there was alcohol in the kitchen and I followed her there. We were the only ones and she looked right at me and asked how I was doing. I think I tried to tell her I was fine, but mid-way through my explanation of telling her that I was okay, the tears came.

She asked if I needed a hug, but then said she was afraid a hug might make it worse so she informed me that we were going to take a shot. It has been years since I took a shot. She was right though…within a few minutes, I was relaxed and more comfortable about being there. I think I am afraid of myself at these things because I never know what to expect from my emotions. Also the fact that I injected an abhorrent amount of hormones into myself over the course of 18 days. May it was 19. I lost count. The rest of the day was good. I met up with a friend for some retail therapy and then out to dinner.

This morning I picked up breakfast for my Bible study group. When it came time for prayer requests, I teared up as I asked for prayers regarding my heart. I struggle with this very ugly feeling of bitterness. My current reality is infertility. And it sucks. I am resistant when people try to encourage me to keep looking forward to what will be, but I’m scared to be hopeful. I struggle to pray for peace because I’m terrified that God’s idea of peace is for me to accept infertility.

So many of the amazing ladies in Bible study came up to me at the end to offer kind words of support this morning. They let me know that they are praying for me, which is huge. While I am still getting to know many of them better, their support has been incredible. I held my cousin’s 6 day old daughter the entire church service. There is nothing better than to spend some quality time with a baby. The miracle of life is absolutely amazing. After the service, I was approached by others who offered their continued support and prayers. As I was getting ready to leave, my pastor’s wife approached me to ask how things were going. I was touched that she remembered a bit of my story I shared with her at an event in April. And not that it was just the general idea of infertility, but details I couldn’t even remember sharing with her.

This afternoon I called my friend and headed to her house to spend the afternoon and evening with them and their neighbors. These are our best friends and though we have been around each other lately, we’ve never really had the opportunity to catch up. I failed to mention much to her about this current IVF cycle and just sent her a quick text the morning of the retrieval. Life is busy, but it shouldn’t be so busy that I’m not even updating my closest friends.

I guess what it all comes down to is how grateful I am for my tribe. For all those around me who are standing by our side and supporting us in so many ways: emotionally and spiritually.

People tell me I’m strong, which is flattering, but I also feel like I’m lying to everyone. That I’m just fooling them all. There is nothing easy about this. I’ve heard the comment that others aren’t sure how I do this. I’m not really sure either.

But I do know that infertility is not the end of my story.

ivf cycle 3, retrieval — November 18, 2016

ivf cycle 3, retrieval

Husband arrived home about 10:45pm Wednesday night. He was in town for just 0ver 12 hours before having to go back to work. Thursday morning was pretty relaxing, as there was no rushing around to leave. This is the latest procedure time we have ever had. Other times we have been down to the surgery center, our appointment time had been much earlier in the morning.

We walked into building, registered, and waited just about 10 minutes before I was called back. Blood pressure and pulse was taken. I signed 87 consents. I changed into my hospital gown, paper hat/shower-cap, and paper booties over my socks. My IV was started and I was given medication to help settle my stomach for the upcoming anesthesia.

They brought back my mom and husband after I was all prepped and ready to go. Husband stayed for just a few minutes, gave me a quick kiss, and then had to leave to get back to his job site in Corpus. The anesthesiologist came in to go over a few things with me and ask more questions.

Dr. G was running a little late, but I always recognize his voice and I heard him as he walked in and greeted all the staff. He knocked on the door of the little room I was in with my mom, came in and greeted us quickly. He still had his bag with him, asked if we had any questions, told my mom they would take good care of me and then left to prep for the procedure.

The nurse came in to get me and my mom left to go out to the waiting room. I walked with the nurse to the OR and she took the blanket that was wrapped around my waist to keep my backside from being exposed. There were at least 8 people in the OR running around as I stood up on a stool, flashed everyone in the room, and then sat down on the OR table. Whatever.

I had two or three people talking around me at once and it was difficult to figure out who was talking to whom. Someone else with anesthesiology was talking to me near my head, while there were two others at my feet arranging my legs in the stirrups. Lovely. They placed three monitors on my chest, took off my glasses, and told me I would start to feel something. As soon as the meds started pumping through the IV I was fading out and the last thing I saw was a mask as they were about to place it over my nose and mouth.

From the time I left the little waiting area with the nurse until I was passed out on the table was about 3 minutes. Maybe even less. I’ve mentioned in many posts about timing being everything with IVF, but it seemed like they were in a hurry today. Normally I am awake long enough to see Dr. G enter the OR, but not today.

I woke up and soon after my mom was with me in recovery. I got dressed and Dr. G came to talk to us. They were able to get 4 eggs. He told me that I might be sore, as they really had to push on my left side. I did not take this too seriously, as I have not had any issues with the last 2 retrievals. I was wheeled to the parking lot and mom drove the 45 minute commute back to The Woodlands. We stopped at IHOP to eat. That has been our place to go since I was in college. We are keeping the tradition alive.

I probably pushed it too much yesterday. I had a little too much confidence in myself and I was worn out and in bed by 9pm, but up around 11. I made it to the restroom, but nearly fainted. It was so strange. I was having serious hot flashes, sweating, and feeling light-headed. This lasted for a few minutes. I made it back to bed and called Husband. I caught my reflection in the mirror and have never seen myself so pale.

The plan was to go in to work today. When I woke up this morning, I adjusted to going in for the second half of the day, but when they called with the fertilization report, I told the nurse about last night and she said it was a vasovagal attack (pretty word for fainting) and that I needed to take it easy today. I called in to work to let them know. Nurse said she would tell Dr. G and then call me back if he wanted me to come in for an exam. She said it was unlikely, but she also told me to contact the office if it happened again during or after office hours or during the weekend and they would put me in touch with the on-call doctor.

Also, I received a phone call this morning about 10:50 to let me know that all four eggs fertilized. They will monitor the embryos to see how many make it to day 5. We will know before Thanksgiving how many have been biopsied on the 5th day for genetic testing. After being biopsied for PGS testing, the embryos will be frozen until we receive the results from the lab, which takes 2-3 weeks. I will start my cycle in the next week or so and I am supposed to call on day 1 so that they can begin monitoring my uterine lining for transfer. As long as everything looks good, we will transfer the one frozen embaby we have from the last IVF cycle.

I’m going to laugh if they call next Tuesday or Wednesday and tell us that all 4 made it to day 5 for biopsy and then they all turn out to be healthy after PGS is complete. There is the possibility that after having 5 miscarriages, we could have 5 babies. Only time will tell…

trigger — November 16, 2016