TTC. Because the important moments in life just don’t fit in a status update! I started this blog when I was training for my first ½ Ironman, (70.3 miles) to record what I hoped would be growth and progress but ended up being a huge learning experience. Although fitness is one of the key ingredients to a happy life, it certainly isn't the only ingredient. My blog has evolved to document growth, progress and setbacks in other areas too. From my surprise proposal in Rome and wedding in the fall of 2013, to Mom's devastating stage IV cancer diagnosis. Who knows what shape it will take, but thanks for being along for the ride.

Wednesday, October 22, 2014

Congratulations and Condolences

“Her absence is like the sky, spread over everything." ~C.S. Lewis

Its been two weeks since we lost Mom. She left this world the day after we heard our baby's heartbeat for the very first time, at 3:15 am, during the full lunar eclipse. The hospice nurse woke us up by knocking on our door and I made it into the living room just after she had taken her last breath. Nathan was right behind me, and my father and brother were already by her side. We did not yet know that it was her last breath, until she did not take another. I used my hands to close her eyes, like they do in the movies. We held hands and prayed, and stayed with her until 7 am when they came to take her away. I took one last photo of us together.

With the loss of Mom came a profound sadness that quickly enveloped me and now permeates everything I do. I thought it would be easier because I knew it was coming. It's not. Being awake is difficult. Sleeping is difficult. And it's there all of the time, like I'm wearing a really heavy, wet blanket.

When I returned to work after the bereavement leave, I had to call a classroom for a student. The substitute who answered was a little behind on the news and exclaimed "Congratulations!" Oh yeah, I'm pregnant I thought. Dreaming about this baby and the future does help somewhat, but is quickly followed by emptiness knowing I will not be able to share it with Mom. Not only is it a loss for me, but it's a loss for our children who will miss out on being babysat by the kindest, happiest, most patient grandmother under the sun. My heart aches knowing they will only know her through stories.

It's such a strange time in my life because what would have been the happiest time has now turned into the saddest time. One of the toughest times is when I would normally call her: on my way to work, home from work and on my lunch walks. We spoke every day of my adult life.

This loss has stirred in me more of a desire to believe in something after this life and cultivate my faith. I went to mass and a prayer event on Saturday at one church, and mass on Sunday at another. I met with a Chaplin for two hours, signed up for a grief counseling group through the church, started reading the Bible, and C.S. Lewis A Grief Observed. Still, I remain skeptical and fearful that all we have on this earth may really be all we have. If that's the case, Mom is gone forever. I don't want that. I want her to be somewhere, anywhere, and I want to be reunited with her when I die.

The Chaplin I met with hit the nail on the head when she said that I seem frustrated with myself for not having faith. I am. I want so desperately to believe, but it does not come easy to me. Just when I seem to be making progress and inching along, a question pops into my mind like "But what about the dinosaurs? Why did God create them?" 

Her funeral is this Saturday, with burial (of remains, instead of internment) at Arlington National Cemetery in Riverside on Monday.

Tuesday, October 7, 2014

List: Inanimate Objects That Now Make Me Sad

As September turned to October, Mom really started to decline. She started sleeping over 20 hours a day, and was no longer sitting up or eating. When my father lifted her, she could not hold her head up. When she talked, she was hard to understand. Most days, I found myself feeling like I had already lost her. While her energetic life-force was dimming, her smile and sweetness remained, even when she was asleep. It is truly something to behold, and happened all last week even in the absence of any pain medication.

I remind myself to look at the glass half-full because that is what she has always done in every circumstance throughout her entire life. Instead of focusing on the great void her death will leave, I look at everything we have and will always have, because she was ours. I remind myself, as she often did throughout her treatment, that even children get cancer. While she is still far too young, she's had a rich, full life. Not a life filled with material things, but instead, the things that really matter.

Even so, sadness has started popping up everywhere. Countering it and re-framing it with thoughts like the ones above can be exhausting and only goes so far when it starts to become like the whack-a-mole game. Sometimes, it's okay to be sad about the loss I am already experiencing and the greater loss I am anticipating.

Below is a list of inanimate objects that have suddenly started to make me really sad. I'm hoping that one day, I will look back on this list and feel a connection with her instead of this suffocating sadness.
  • Shampoo and Conditioner. I ran out of mine, and grabbed hers from her bathroom, borrowing them as I would have done when she was healthy. As I was washing my hair last week, I was struck with a profound sadness because she bought the economy size bottles. Little did she know when she bought them that she would not finish them.
  • Lays potato chips. Her favorite. Passed these in the airport and they glared at me.
  • Tustin Tiller Days. A local carnival we went to last year. They started promoting and when they put up the signs and I drove by them and thought of our memories, the sadness struck me in my stomach.
  • Overhearing girls/women be rude to their Moms. No explanation needed.
  • Gift shop souvenirs. I went to the Smithsonian last week, and seeing pretty, pink flower earrings I would normally have bought for her broke my heart.
  • Photos of her. Especially after her diagnosis, when everything still seemed okay. Looking at them hurts. Where did she go?
  • Plants. All of her plants through out our house and backyard, especially the pregnant onion because she was so excited to show me the babies. I imagine planting them with my son or daughter some day, and ache because she won't be there.
  • Handicap placard. Opened my glove box the other day looking for a pen and realized there would be no more fun trips.
  • Christmas decorations. How will I put her decorations up? How could I not?
Though these things are hard, I know a thousand more will pop up once we loose her. And though I have anticipatory grief right now, I'm certain it will be nothing like the real thing when it arrives. We finally have continuous hospice care. Someone is by her side 24 hours a day now, and they can tell if she is in pain even by just a facial expression. She is transitioning, and they anticipate her time left on this earth to be 24-48 hours.

Saturday, September 27, 2014

I'm Pregnant!?

Prior to the good news Thursday, it had been a rough week, to say the least.

You haven't really lived until you've stood in line at CVS for a prescription and just started bawling. As I was called up to the counter to get a refil of Mom's anti-nausea pills, I still wasn't able to compose myself and had to respond to their cheery "CVS number?" inquiry through tears. While I feel like I am able to hold it together 99% of the time, and actually find work a welcome distraction, I can't be strong all of the time. No one can. Three nights ago, I actually woke up crying, still very much "in" the dream I was having about Mom dying.

Mom now needs someone with her 24 hours a day. My Dad is with her all day long while we are at work. For 45 years, she has waited on him hand and foot and now he is the one helping her use the bedside commode, fixing her tea, coaxing her to eat. When I get home, I relieve Dad, who has some time to read or watch his Fox News. We encourage him to leave on the weekends, and he usually spends time with my brother. When he's gone, Nate sets his alarm every 4-5 hours through the night to lift her onto the commode. She is spending more and more time sleeping, and cannot sit up by herself or position herself in bed. It is the hardest thing to bear witness to, and it breaks my heart every second of the day.

We placed her on hospice this week. I thought this was our choice, but it wasn't really because home health care was going to run out anyway on the at the end of the month. We need additional help and support for her, probably beyond even what hospice will provide, so we are also looking into hiring someone to come to relieve Dad, especially while we're in DC next weekend for Nathan's brother's wedding.

Her short term memory is not there, and it is hard to even have a conversation with her because she is so weak and tired. I mostly just lay next to her and read, craft or facebook. But there's one thing that she hasn't forgotten about. On Monday she asked me "Did you get...the ... circle?" Realizing that circle was not the word she intended, she said "Ooh!...did you get the..." And I asked "Pregnancy test, Ma?" Yes! That was what she wanted to know. "Not yet, on Friday" I had to tell her. How I hoped we have good news, but feared we would not.

Thursday, I met with a fellow middle school counselor who is also at a 7-12 school for collaboration and to share resources. We decided to meet at Starbucks instead of either of our sites, because uninterrupted meetings are nearly impossible when people know where to find you. Completely off coffee for four days now, I ordered my venti passion fruit ice tea with light ice and no sweetener and the hour flew by.

After our meeting, I went over to CVS and bought a test, to have on hand for morning. But as I was walking back to my Jeep, all that tea was getting to me and I needed to use the restroom. Being in the Starbucks restroom with my test proved to be too tempting. Even though you're supposed to test in the morning when levels are likely to be higher, I could not resist. I set the test down and tried not to look at it for the suggested 2 minutes. I lasted about 5 seconds before I took a peak.

Positive!? There was already a plus sign, and it wasn't faint. I honestly could not believe it. Frantically, I checked the key on the test, afraid a plus sign actually meant the opposite. I sat there and stared at it, smiling like crazy. And then I started taking pictures of it because I was afraid my proof would disappear. I checked the key several more times, to make sure I wasn't misreading it, and walked out of the bathroom, beaming.

Elated, I got in the car and thought of how I was going to tell Nathan. Even though I was already on the drive home, I knew I wouldn't be able to wait until then. I called him right away. "I'm pregnant!" I announced, and he told me not to mess with him. I have been known to, he pointed out, as I had hidden his Mustang on April fool's, leading him to believe it had been stolen. "Nope, I just took a test and it's positive!" He couldn't hide his excitement.

When I got home, I went straight to Mom's bedside. Gently waking her, I waited until Nathan got home, a few minutes after me, so that he could film me telling her the news. It was a much more muted reaction than she normally would have had, but an enthusiastic one nonetheless. After spending some time with her, I had to head back to work for Open House. It was great to see everyone and get the hard-earned congratulations.

Its early days still, and of course I won't be in the clear for another 10 weeks. One in four women miscarry in the first trimester. But even if that were to happen, it is still good that I can get pregnant. I'm soaking all of this up and could not be happier. For now, it's at least a break in the clouds.

Friday, September 12, 2014

Our 2nd Embryo Transfer

Yesterday was a big day for us: embryo transfer day! After one failed IVF, I have to say that my heart is even more set on this one working. I'm not sure how that's possible, since I wanted it an awful lot the first time around (read about our first transfer here).

I guess I want this to work more than I did last time because it didn't work last time. Our failed attempts have intensified my desire to be pregnant and become a Mom. We've all heard stories about someone who was given a material possession, a car maybe, that they took for granted because they never had to work for it. Even budding relationships work this way, leaving us worried that someone who is readily available has something wrong with them, pursuing instead the one that isn't really interested in us. Within each of us seems to be an innate tendency to appreciate more, and rejoice in, the things that are tough to obtain. When you really work for something, you appreciate it more and conceiving is no different.

This is certainly not to say that if a baby were to drop out the sky the second we wanted one, we wouldn't love it just as much - we certainly would - but, I wouldn't appreciate it, or the struggle, nearly as much as I know I will now. This process has led me to put an increased value on being pregnant and the opportunity to become a Mom. If this works, I will be so much more elated than I would have been if it happened on our honeymoon.

We woke up and got ready for an appointment with Mom's neuro-oncologist, not knowing how many embryos we would have to transfer. Our last update had been the day after they were fertilized, and only two were developing normally. What if we only had one? What if we had...none? The four of us sat in the room discussing taking a break from her intrathecal chemo with Dr. Carrillo, and some concerning new symptoms/confusion. The night before, I was sitting at the kitchen table with Mom when she called out "Megan!" I touched her arm and said "I'm right here, Ma." And she looked at me and called "Megan!" two more times before telling me "She's not listening." It was, and is, absolutely heartbreaking.

Before we knew it, it was time for us to leave for our appointment. We've built a relationship with Dr. Carrillo, and he knew we had made into the trial. I stood up, and explained that Nathan and I needed to leave while Mom and Dad finished the appointment because "We have embryos to transfer!" He was excited for us, and stood up too, thanking me for the blog posting about Sunida that he was mentioned in. Very humbly, he said "Everyone's talking about it" and that it was seen by some really important people, including the CFO of the hospital. Hearing that his boss, and bosses' boss read my posting made me feel so good, because I owe them so much, yet have little I can do to express that gratitude. The time, care and comfort he gives us is invaluable.

Nathan and I set out on the drive to Encino. A little traffic, but not too bad because it was the middle of the day. I was drinking a lot of water to ensure a smooth transfer, and took the Valium they prescribed to make sure I would be relaxed. It was a very small dose and didn't last long but it certainly helped. We checked in, and didn't know how many we had. I had my blood drawn, not knowing how many we had. We sat in the waiting room and the doctor waved hello to us from behind the counter as I tried to decipher what his wave and smile meant. Was it sympathy?

We were called back into the room and sat there in the dim light, still not knowing how many we had when Dr Tourgeman waltzed in. "How are you doing?!" he energetically asked. "I don't know." was my very truthful response. "It all depends on how many we have." He flashed a huge grin and told us that we two healthy embryos that look perfect and are ready to transfer. The other three will be watched over the next few days, and if they do what they're supposed to, they will be frozen. Two aren't dividing, and one is asymmetrical.

We transferred the two on the left, than the three on the right will be watched.
It was so amazing to watch the transfer. You can actually see the little embryos (or embies, as I like to call them) go in. Although it's hard to pick up on the video, they look like little orbs of light. Light that contains all of our hopes and wishes and dreams. If they're going to implant, it will be withing the next five days, but a test won't pick up anything for an agonizing two weeks. And so I enter the dreaded two week wait. Spending the first day off work, on bed rest with Mom and with Trevi.


Wednesday, September 10, 2014

Egg Retrieval #2

My egg retrieval went well on Monday. I like going under anesthesia because its effortless and painless and when you wake up, its magically all over. But I guess I do get nervous about going under, and even more nervous about the results of the retrieval. I asked them to give me something in my IV to help, like they did last time. They chose versed and gave me the lowest dose. I felt the same, and so they gave me more. I still didn't really feel much different when they wheeled me into the operating room and transferred me to the table. The doctor was running late, and the last thing I remember doing was checking my watch and tapping my fingers on the stainless steel table.

I must have still been nervous, because when I saw him after I woke up in recovery, the first thing that he mentioned was how anxious I was when he came in into the room. I don't know what I said, because I don't remember even seeing him.

I was surprised to learn that he was able to retrieve 10. We knew not all of those would be mature, but were still quite pleased with the number because last time, a different doctor retrieved only 7. I went to bed that night excited and hopeful.

And then the next day, yesterday, that hope was deflated. The call came that only two were developing normally. All 8 fertilized, but three weren't doing anything just yet (the DNA wasn't unwinding) and 3 had two polar bodies. There's a chance that the three slow ones could catch up, but no chance that the others will develop. Then he said something pretty unnerving: "This is likely an egg issue." I don't know what that means, and have more questions than answers right now. But I am holding on to the hope that comes with knowing some women have been in a similar situation egg-wise, and are now mothers. One girl I know had 19 eggs retrieved, and only three fertilized normally. And one of those three is a beautiful 3 month old girl.

They told me that they would not check them again until it was time for transfer day, tomorrow. I keep picturing them, all snug in their little petri dish and wonder how they're doing. Will we have only one? Will there be three?

We will transfer one or two, but if there happens to be three, the extra one will be frozen.

There's so much riding on this, and not a darn thing I can control other than my outlook, what I eat, and how strict I am with my bed rest orders (very!). My instructions for tomorrow include drinking a lot of water and taking a Valium one hour before to make sure I'm relaxed during the transfer, which should take place around 1pm.

Saturday, September 6, 2014

Faith, Hope, Gratitude

After three visits to Encino last week (3-4 hours each time), my doctor told me he needed to see me again this morning. I didn't get home from my appointment last night until after 7pm, and since today is Saturday, I was so looking forward to chipping away at my sleep debt. School started Tuesday and under ideal conditions, I would be swamped with schedule changes. But I had to either come in late or leave early three different times, which put me behind. I also caught a horrible cold that I'm still recovering from. Add to that the fact that Mom was still in the hospital up until last night, so each day also included a few hours at her bedside. Of course I wanted to see her, but I also needed to relieve my Dad. Thankfully, my brother came and spent the night with her earlier in the week, allowing Dad to spend one night in a comfortable bed without nurses coming in every few hours. 

Dad has been with her 'round the clock since she was admitted almost three weeks ago. His devotion to her is really shinning through during this time, even though every day is challenging. It is unbelievably hard to see someone you love so dearly need help with ... everything. It absolutely breaks your heart. Helping them isn't the hard part. The hard part is seeing them wanting and trying to do something own their own, but unable to.

Mom's situation has been trying on all of us. While it does help to have the prospect of a baby to focus on, I recently came to terms with the fact that it may not work this time either. At this stage in the game on our first round of IVF, we had 12 follicles (7 were retrieved, and 3 made it to day 3). Right now, we have half as many. 

My doctor counted 8 yesterday, and bumped up my retrieval from Wednesday to Monday because they were growing faster than expected. But today, a different doctor counted only 6. My husband and I were confused about the discrepancy, until he explained that the other two are still there, they're just not large enough. There's a small chance they could catch up by Monday, but it's unlikely.

So how does one come to terms with the prospect of not getting what they desperately want, when they want it? How have I "accepted" that I may get another BFN? That I may not be a Mom this time around?

  1. Hope. For the future, for next time. Hope that it will eventually work. I know that if it doesn't work this time, we will try again. Hopefully, we will be able to do the Ivy Study a second or even a third time. I know people who have a child though IVF even though it didn't work the first, second, third,  even fourth times. And, if worse came to worse, we would consider surrogate eggs or adoption. Adoption is something we hope to do someday regardless. So, I have hope that I will be a Mom, its just a question of when and how.
  2. Gratitude. I am so thankful for what I have, right here and now. I realized earlier this week that I spent so very long wishing I had a husband. And now, I don't just have any ol' one. Somehow, I managed to wind up with one better than any I could ever dream up! Dear future child reading this: Never settle! Hold out for exactly what you're looking for, and then some. He's really all I need to be happy. Everything else is just icing on the cake.
  3. Faith. I don't have as much as I would like, but I have more than I've had in the past. It would be easy to turn away from that right now. But I have been actively trying to cultivate it by reading, praying and going to mass. I realized last week that I had gained some ground when instead of intelligent design seeming unlikely, the idea that all the beauty and pain in life is just random seemed more improbable.  

Even though I'm prepared for it not to work, I am still hopeful it will. I'll update before our embryo transfer on Thursday with how many we retrieved and how the little fellas are developing.

Now, setting my alarm set for 2 am so I can take my trigger shot!

Thursday, September 4, 2014

Grow follies, grow!

If you follow me on my instagram or facebook, you know I am officially in The Ivy Study and just finished up my first 7 days of stimulation medication. Last week, I was so nervous about the final 'hoop' that I had to jump through (having an estradiol level under 25) that I could hardly contain myself. I blogged about it for Fertility Authority:

Hope, in a Jar


A blog by Megan Swanek, August 31, 2014
Remember as a child just how excited you were on Christmas morning, hoping that one of those presents under the tree was the one you really wanted? And how disappointed you knew you would be if you didn’t get what you had been hoping and wishing for over the last few months? That feeling pales in comparison to just how nervous and excited I was the other day waiting on the results of my blood test and estradiol level. Read more...

Please click HERE to continue reading the my posting. They do keep track of views, so every click helps.

My levels turned out fine, and after 12 days of giving myself Lupron injections, I was given the green light and drove home with my follicle stimulating medication on ice. I have been given the study drug, AFOLIA, which is being tested as a generic equivalent to Gonal-f. Garnering FDA approval for this will ultimately help bring down the cost of IVF medication for women across the country, a cause I am all for. After-all, if it weren't for the reduced cost of this clinical trial, we would not be doing IVF right now.

Tuesday was day five of my stimulation medication, and I had an appointment for a scan, blood work and to receive more medication.  My scan showed 8 follicles, which was a bit disappointing. At this point in the process the first time, I had 12. He increased my dosage of AFOLIA from 225 IU to 300 IU to ensure they all kept growing. Stimulation medication never affects how many follicles you have. It only helps those you do have reach maturity.

Sure, it could be better. But as with all things in life, it could also be much worse. What if I wasn't responding to the meds? At least my 8 follicles are all growing, and I'm still in the study! I had them checked again today and everything looks good. My doctor needs to see me again tomorrow afternoon to decide exactly when I need to give myself the HCG trigger shot. I'm still on the 10 IU of Lupron each morning which is preventing ovulation, and this trigger shot will ensure that ovulation occurs 36 hours after its given. 

Then, it will be time for retrieval! Right now, retrieval looks like it will be on Wednesday, with a possible transfer on Saturday. The study specifies that we have to transfer two on day three, but I don't know if we will have that many. I was worried about what this would mean if we have less, but I double checked today, and they will still transfer one if that's all we have. 

And, one is all we need.

Wednesday, August 20, 2014

The Power of a Smile

Today, in all of its ordinariness, is one of the best days of my life. The lower your lows, the more amazing the average days seem. Mom is finally responding to the IV antibiotics, and seems almost back to her old self. Her speech delays are nearly gone, her short term memory is improving and her confusion and hallucinations have evaporated. She may be released as early as tomorrow to a rehab facility to help her regain her strength, and hopefully even start walking again. As it turns out, when she suddenly took a turn for the worse two weeks ago, it was due to the sepsis. It wasn't her brain cancer, or a side effect of the chemotherapy like we feared. All along, Mom was just fighting off a life-threatening infection that had invaded her bloodstream.
The seizure she had on Saturday morning probably saved her life. It caused her to get the medical care she needed right away.
And what amazing medical care it is. I cannot speak highly enough of the UC Irvine Medical Center staff. From the time we checked her out against medical advice of a horrible county facility in Moreno Valley and brought her to the emergency room here in August of 2013, she has had the highest standard of care. Mom has an amazing team of doctors, nurses, residents, attending physicians and social workers that I cannot say enough good things about. Her neuro-oncologist, Dr. Carrillo, calls us back within minutes when paged, even if it's on a Friday night or before dawn on a Saturday morning. He takes the time to meet with us and is one of the most compassionate doctors that has ever walked the earth.

But you do not need to be in one of the traditional helping professions to truly make a difference in someone's life. There's one bright smile that comes to my mind when we're on our way to an appointment, and it belongs to Sunida.
Sunida, the face of UCI Medical
Sunida works in valet services at the Chao Family Comprehensive Cancer Center. But she provides a much more valuable service than that; she brightens our day. When we started coming here just over a year ago, we were frightened and scared. We dreaded our appointments. She was one of the first people we built a relationship with, as she quickly learned all of our names. She started asking my Dad 'Where is your pretty daughter?' when I wasn't there, or would tell me 'Your Dad makes me laugh!' when I would bring Mom. She always greets us with the biggest smile, and when she asks Mom how she's feeling, you can tell she genuinely wants to hear an answer. When she's not there, I have to say I'm a bit disappointed.

Many times, I come straight from work to Mom's appointments. I often drive there, my stomach in knots, knowing we will be receiving the results of a scan. Or, worried how the new chemo. she is about to receive will affect her. Appointments with the doctor can be unpredictable, but seeing Sunida is not, because she always puts us at ease. Without realizing it, I started looking forward to seeing Sunida.

A few days ago, my Dad was returning to stay the night with Mom and walked by valet services after he parked their car. Realizing that Mom wasn't with him, Sunida asked where she was. Dad filled her in, and without skipping a beat, she asked what Mom's room number was.

Today, as I was about to take the elevator to the neuroscience step-down unit on the 5th floor, I heard my name. There she was, huge smile as always, with flowers in hand for Mom.

Mom was so surprised, because seeing her was out of context. It took her a second to realize that she was there to see her, and that she brought her flowers. Carnations were Mom's wedding flower. Even now, a few hours later, Mom is still talking about what a sweet gesture it was to care enough to take the time to bring her flowers and a card. But it was also all of the days leading up to this, and all of the days that will follow.

You cannot put a value on what she has given us over the last year. No matter what happens, Sunida will always be someone who makes me smile when I think about her. At the end of this fight, we will hold in our hearts all of those who have led this charge with us. Including Sunida who always adds a little brightness to our day no matter how gloomy they may seem.



Sunday, August 17, 2014

Hope + Hopelessness

Yesterday was the most difficult day of my life, but today is proving to be stiff competition. I'm writing this from Mom's bedside in the neuroscience stepdown unit, where she is heavily sedated following her MRI. We are waiting to see her doctor. Wondering if she will come home. I do not want to spend time and energy describing or documenting what has transpired since Mom had her seizure yesterday at 5:30 am. It has been a horrific 30+ hours, and I'm going on little sleep. I'm hoping that, in time, I will forget some of the details and committing them to paper/computer won't help.

There is nothing worse in this world than the hopeless you feel watching someone you love so deeply suffer. The only thing amidst all of this that brings me a brief respite (besides Nathan, Trevi and looking forward to the routine of going back to work) is the hope that I will soon be pregnant. I pray that this round of IVF, which I officially started today, will work.

A few things are different this time around. For one, I am on 20 units of Lupron injections for a straight two weeks. Before, I was only on them for three days. Lupron plays an important role in the down regulation of your cycle. In conjunction with the birth control pills, it helps shut off the body's normal process of hormone and egg development. This way, when I begin the stimulation drugs, there will be more of a response. Like how a dry sponge soaks up more water than a damp one.

The cost is also dramatically different. The first round cost $17,000. This clinical trial was $3,500 plus $550 in medication, which I was very excited to pick up Friday. I picked up Lupron, my trigger shot and my estrogen, which I will be on for two weeks once the embryos are transfered. The study medications are actually free, and I receive them at me next appointment on the 28th. That's also when I when I will find out if I am in the study group (AFOLIA) or the control group (Gonal-F).

On my first round of IVF, I did not know that different doctors have different protocols. It makes sense that they would, and helps explain why different clinics and doctors have success rates that vary wildly. The previous clinic I went to had a success rate of 17% for my age group. This clinic is actually at 50% for the same age group.

I was also fearful of the needles first time around. With my eyes tightly shut, I sat at our dining room table for about 20 minutes; my hands sweating and trembling. I was slowly pressing it to my skin, but not hard enough to make any progress, drawing out what should have been quick and (relatively) painless process. This time, I gave myself the shot like a champ. As soon as I woke up in Mom's hospital room and remembered it was go day, I was almost excited. I took out the medication out of my overnight bag, cleaned my skin with the alcohol wipe, filled the syringe and stuck it in with a dart like motion, just as the how-to videos describe.

With everything my family is going through, I am thankful to have something this positive to look forward to. Hopefully, a final difference between this round and the last is that this is the one that works.

Saturday, August 16, 2014

Rising Up & Settling In

I Finished this blog post late on Friday night. On Saturday morning at 5:30 am, Dad knocked on our bedroom door and told us to call 911. Mom was having a seizure. Here at the emergency room now. She is responsive and seems like herself right now. Alarmingly, she did not right after on the stretcher on our doorstep. She's getting a brain CT and other tests now and we should be able to see her again soon.
This week has been full of ups and downs. A few short days ago, we hit the lowest point since Mom's diagnosis. And then Thursday, we somehow caught a warm current and are now rising back up.

Mom spent the majority of Monday in bed, asleep. On Tuesday, she had a rough morning, so Nathan and I went to her appointment with Dr. Carrillo while she rested at home. Instead of administering her intrathecal chemotherapy, which we had already decided to skip, he met with us. He was very generous with his time, and spent about 45 minutes discussing Mom's condition. He agreed that she should not have either chemo while she is this weak, and somewhat hesitantly admitted that her new symptoms could be caused by the chemo administered directly to her spinal fluid through the port in her head. There is no hint deceptiveness in his uncertainty. Rather, I think it is hard for anyone, no matter their training or expertise, to really pinpoint why she has had such a dramatic decline in her mobility. There are just too many variables.

When we returned home, Mom was awake; a good sign. She remained awake the majority of the afternoon, while she watched a KCET special on Italy (Rome! Venice!) and I tried to tidy and unpack. Their boxes have filled the garage, and are spilling out into the dining room. Because she has lost her taste, appetite and ability to keep food down, I tried very hard to offer her something small to eat every hour.

I would be grateful if I had a husband who was okay with Mom moving in. Instead, I have a husband who suggested it, and I will never forget that. It is amazing waking up and knowing she is just across the hall, and that this priceless gift is possible because of him. As I was trying to get her to eat every hour, I realized there is no way I would be able to offer this level of support and care if she didn't live here. And as making this situation possible makes me love him even more, he told me he is falling more in love with me because he sees me nurturing and caring for her. Other guys would be inconvenienced, annoyed, or jealous of the time I'm spending with her. Instead, he finds it attractive.

After our tidying and  tv watching, I took her out to the patio in the backyard where all of her potted plants are and she held the hose to water them. She could tell the screens were dirty and gave them a good spray, and then watched while Nathan took them off and I windexed the windows. It wasn't high tea on the Queen Mary, but it was an activity we were able to do together, and she enjoyed feeling the sun on her back. She also started her physical therapy. Someone came to our home and had her do several exercises such as standing up from a seated position and, while holding on to the piano, briefly lifting one leg, and then the other.

On Wednesday, she had her gamma knife surgery (fifth time!) and it was a success. After getting the metal frame attached to her head, and an additional MRI she was "only" in the machine for 1 1/2 hours. She had some confusion, which is new, and asked me how work was even though I had been with her the entire time. We had the appetite stimulation prescription filled, and thankfully, she did start eating a little more.

Each day she was a little better, but Thursday brought the most improvement. It was around 5pm and my Dad was getting ready to go back over to their apartment to clean and move more items out. Mom announced I want to walk. Nathan, who has an alter ego named Hans that helps Mom walk, said Okay - where do you want to go? To the car, across the street! And across the street she went. We steadied her, and her steps were very small, but she did it! I  left to take my Cat Isis to my friend's in Hollywood with a smile on my face almost the whole way. I called his Mom, excited to share the good news.

And that brings us to today. With those big gains yesterday, I was hoping for more. But, we always want more. More time, more dinners out, more vacations, more money, more...stuff. But this disease is teaching me that it isn't always about more. Yesterday, I was reminded that you can have just as good a time with simple pleasures and activities. Like helping Mom shower. We had a laugh when she asked me why I wasn't taking a picture, to post on facebook. When I retold Nate later, he exclaimed Mama DeWitt's back! and she smiled and pumped her fist in the air. I need to remember how she was just days ago and be thankful for the small improvements she's had, that she is now living with me, and that my husband not only loves her, but he loves me that more for loving her.