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.

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.

video




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.

Monday, August 11, 2014

Occam's Razor

When you're going through a tough time, waking up is the worst, especially in the middle of the night. You have a few precious seconds before it all comes flooding back, and then you remember what you have to get up and face.

I didn't sleep well last night, and woke up several times even though I had a sleep debt from the yard sale this weekend. When I woke up, I worried, and started thinking of all of the what ifs. I got out of bed after about 6 1/2 hours and was so surprised and happy to see Mom awake, sitting up in bed. Dad had given her the morning medication, and she had her coffee beside her and the news on. As tough as everything is right now, waking up with her across the hall from me is a real gift. Things seemed alright.

I noticed a missed call from UC Irvine Medical center, and a message from her neurosurgeon's nurse asking me to call and have her paged. I called her at 9am, and she asked if we lived close and said to come in at 9:30am. I was prepared for the worst. I think we all were.

Before we left, I decided to walk Mom around the block with Trevi. You have to grab those good moments when you have the opportunity. Plus, its good practice for Trevi to get used to walking with a stroller, right? Navigating both of them proved harder than it seemed and when I was a street over, I was relieved to hear  Dad's footsteps behind me, as he took over holding Trevi's leash. Even so, doing this made us 5 minutes late for Mom's appointment.

Those five minutes seemed increasingly insignificant as we waited a half hour, then an hour, then a whole two hours. The four of us filled the tiny office and Nathan and my Dad had a nice banter about solar energy, non-profits and hikers, while I wrapped my arms and a few hospital blankets around Mom's shoulders. Again, she started nodding off.

Her neurosurgeon Dr. Linskey finally came in with news that none of us were expecting: Mom's lesions are small, treatable, and he wants to give her the gamma knife this Wednesday morning. The machine will be on hiatus for three weeks starting Thursday, while they replace the cobalt, so it's important we get her in. He said she has always responded well, and considered one of his "star" patients, with frequent-flyer miles.

It felt like a huge weight was lifted off my chest. My husband and I left after the good news, as Dad was planning to take her home as we had an errand to run. But as quickly as my smile almost appeared, it dissipated when Dad returned and explained that she threw up on the way home. And then she fell asleep again in her chair at 1pm.

At 4:30 a home healthcare company nurse came to conduct an evaluation and hopefully order some equipment to make the house more safe and comfortable for mom. Including, hopefully, a hospital bed. She said that mom's weakness is, in part, due to her inability to keep anything down. But that does not explain her loss of coordination, balance and immobility. Mom faded in and out of sleep while she was here.

Around 7pm, I helped her into bed, and changed her clothes because she did not have the energy for a shower. We laid down on her bed, and put on a murder-mystery. But she was out within about 5 minutes. As I lay there, something hit me, and I sure hope I'm right: Maybe the intrathecal chemo that she receives through a port in her head is causing the sudden onset of symptoms.

I called in Nathan, and then Dad to run this Occam's razor by them. When did her symptoms start? A few days before San Diego. What did we have done before San Diego? Her intrathecal chemo. We held off on the chemo in her thorax, because we wanted her to be able to enjoy the trip. But instead, she got a whole lot worse.

Further evidence to support my theory: Her neuro-oncologist, Dr. Carrillo, told us Friday that these symptoms seem brain-related, not related to the chemo in her thorax. It's been 3-4 weeks since she's had that, and if that was the cause, they should have subsided. He thought it was due to the new lesions. But then today, we meet with Dr. Linskey, her neurosurgeon. He said that her lesions are not causing these symptoms.

Also: Nathan reminded me that Stanford said there is no "real" proof that she even has cancer cells in her spinal fluid! All of her tests have come back inconclusive. Even UCI admits that it is their best guess based on how she is presenting clinically.

Tomorrow, Mom is scheduled for blood work at 9:30am, followed by intrathecal chemo at 10:30. We are going to talk with Dr. Carrillo, but are 99% certain we are going to take a break from this chemo as well to see what happens. Mom was walking two weeks ago. If she could regain some of that mobility and quality of life I would be elated. I was much more upbeat on my nightly walk with Nathan, which we just got back from. Our time was a little faster because there were no breaks due to my crying. This new hope is small, but it's something. I have a feeling I will sleep much more soundly tonight.

Cancer: The Worst Monster

When you're a kid on the lookout for monsters, everything is okay as long as the lights are on and you keep watch. If you're vigilant, they won't appear. But the second you look away or turn off the lights, you are sure they will be there.

Right now, as an adult, the worst monster I can imagine is cancer. And I let down my guard.

No sooner had I updated that all was well on the one year anniversary of Mom's cancer diagnosis, than she took a turn for the worse. In one short week, she has been relegated to a wheelchair. She has more than lost her strength: she's lost her coordination. Taking baby steps and even stepping on-to, or off-of a curb is dangerous. She has lost her taste in food, is sleeping more and more each day, experiencing some confusion, and becomes nauseous or throws up without much warning, even with her anti-nausea medication. She is also starting to have more pain.

But some things have not changed: her positive, sweet demeanor, sense of humor, and nurturing generosity. For example, yesterday, on their 45th wedding anniversary, we held a yard sale with all of her household items. Mom insists on dividing it equally between herself, me and my brother.

If you think Mom has spent one second complaining, then you don't know Mamma DeWitt, as my husband lovingly calls her, very well. You see, this decrease in physical abilities has coincided with her Dream Foundation wish being granted, and I guess you can't enjoy being around the animals at the San Diego Safari Park if you're complaining, even if you have lost your mobility. Once again, her positive outlook on our trip even in light of everything she endures astounds me. How many people frequently get in a bad mood over smaller, more insignificant things?

I would like to, in fact planned on, this posting being about all of the good moments we shared on that trip. But will need to do that in a future posting. Things seem to be rapidly changing daily and I feel the need to update in real time rather than revisiting last week. Mom's MRI scan on Friday showed 4 new brain metastases and a 5th one previously treated increased in size.

Before the scan, I had hoped these new symptoms could be attributed to something else. Of course her cancer cannot be cured, but I had hoped the side-effects could subside. Maybe she had some swelling steroids could reduce. Maybe it was the effects of the chemo and the break would help. Her strength would come back, along with everything else and we could go back to how things were over this past year. Instead, I learned these new symptoms are the result of her brain cancer. And while the gamma knife has been an option all year, Dr. Carrillo said we are reaching critical mass. A time when they will not do gamma knife on her, because there are too many and it is in the folds. In the fluid of her spine. He said he would not know if it would be this time or the next.

I am absolutely terrified. When the idea was proposed that Mom and Dad would move in, I imagined us cooking together. Sorting through boxes of old photographs. Watching movies. Me pushing her around the block in the wheelchair at sunset. But what I imagined and hoped for is quickly slipping through my fingers. Just last Thursday, I was alarmed that she slept from 4pm until 8am. Today, she feel asleep in the chair shortly after my friend Kay brought us food, around 1pm.

Around 5pm when she woke up, I thought we would put on a movie like we did last night when we watched Don't Look in the Basement, a b horror film she watched when she was pregnant with me. But she was only awake for about a half an hour, as we transferred her from the living room to her new bedroom across from ours.

But what a half hour it was! We had all worked very hard while she was asleep - especially my Dad, brother and Nathan - moving all of her bedroom over here. She was so happy with the big reveal of her room, complete with the rose bush we were going to plant outside her window, but instead stacked on top of a bunch of paving stones so she could see it while sitting. As she lay next to me, she rubbed my arm and my legs and then quickly fell asleep. I rubbed her back, and stayed for awhile before coming out into the living room and bawling in front of my Dad and my husband.

In my last posting, I quite honestly wrote that I could not remember the last time I cried over this. Now, it is daily, at the drop of a hat in moments I can steal when she's not looking. And as I fall asleep.

My husband and I went on our three mile walk under the bright moon and he talked to me about fullness of life, and how all of our experiences - good and bad, add to that spectrum. He helped me reframe some things, including the fact that she is only 63. He said she has had a fuller life than some people who are 83 when they die, and he's right. More about that conversation in a future posting as well. While the walk and conversation made me feel better, better is a relative term. We still had to stop twice so he could hold me as I cried.

Right now, I don't know if we will be able to go on our trip to Catalina that my friends gave her for her birthday. It breaks my heart, but thank God for this past year, and the adventures we have had. A year in which somehow, I was able to not worry and anticipate all of this. Not being hyper-vigilant brought me a new normal and allowed me to make the very most of that time. I need to try, as best as I can, to keep that up. But this is an adjustment period, as was the time following her diagnosis.

I think I will be able to do it, because I know darn well she would be able to. She always put her family first, no matter what hardship she was enduring at the moment. And she would do it effortlessly. With a smile, and without complaining. Plus, what fun is life if you're always looking on the look-out for monsters? More good times lay ahead, even if they are different than what I would like.

Wednesday, July 30, 2014

One Year Ago: Mom's Diagnosis

Today is an anniversary and milestone of sorts. One year ago, Nathan and I were at his parent's home in Oregon when I got the call that Mom had a brain tumor and needed emergency surgery.

Mom, a regular Curves client, was healthier than she had been in years. A few years prior, she had high blood pressure and was pre-diabetic. Her doctor wanted to put her on medication but Mom refused and instead, said she would change her lifestyle. I'm sure doctors hear that a lot, knowing people rarely follow through, but Mom really did. She started following the Forks Over Knives diet, lost quite a bit of weight, and no longer needed medication. But lately she had developed bouts of nausea and dizziness following "the worst headache of my life." A headache so severe that she could not even get to a phone to call anyone. Not wanting to worry me, and hoping it would pass, she didn't tell me about any of these symptoms for a week or two. By that time, we were in Oregon, and I pleaded with her to go to the emergency room.

Mom didn't want to go to the ER because she had already seen her primary care doctor, who didn't seem too concerned. This "doctor" told Mom she may have a slow brain bleed, and ordered an outpatient MRI, a procedure that would have taken weeks. Not feeling any better, Mom finally acquiesced and agreed to be seen. I remember that day in Oregon, waiting for the call.

Sitting around all day and waiting was killing me, and so I decided to go on a three mile walk. I went down to the frontage road and back by myself while everyone was preparing dinner. Their property in Oregon doesn't have cell coverage, something I really love. As I was walking back, I remember the strong feeling that these could be the few last normal moments before everything in our lives changed. Somehow, I knew.

I was numb when Dad told me that an MRI showed a tumor in Mom's cerebellum and that she would need brain surgery as soon as possible. That's all we knew. We didn't yet know that it was cancer, and had spread from somewhere else, though that fear was surely in the back of all of our minds. As he spoke, I wrote what he said down, while Nathan looked on. Nathan nodded to me and began checking flights.

What you remember the most in the moments following devastating news is the kindness of others. It is paramount, and means so much more than it would on an ordinary day. I remember his brother, Thaddeus, researching what hospital to transfer Mom to, something I never would have thought of. You have choices, even when it feels like you have none. Rebecca, TJ's girlfriend (and now fiancĂ©e), expressing genuine kindness and concern in the kitchen and hugging me. His Mom and sister Brittany, taking turns being with me as alternated between blankly staring at the wall and crying, making sure I wouldn't have to be alone.

His Mom opened up and shared her personal stories about her loved one's care. She began preparing me to advocate for the best care for Mom. Brittany and Pat, agreeing to take my dog Trevi with them on the long drive back to California. His brother Ben, who knew something was wrong and was sad right along with me. Uncle Don, visiting from Pennsylvania who slipped Nathan $50, knowing the cost of last minute flights. And his father, who woke up before dawn and drove us to Portland to catch an early flight. Lastly, and most importantly, Nathan, who is my rock. He sprung into action, yet remained calm and sweet toward me in the face of all this, and held me that night while I cried myself to sleep.

I also remember the kindness of strangers. On the plane, I realized I was really thirsty. I was barely holding it together as I asked the flight attendant if I could buy a bottle of water, like the one she was holding in her hand. She abruptly told me they weren't for sale, and that she could only give me a cup. I was curled up in my seat, and didn't want to put the tray down or hold a small cup of water. I didn't say anything except a weak never mind. Somehow, she read my body language. After she had attended to everyone in her section, she came back with a new bottle and a smile, giving it to me free of charge. I was so touched by her simple gesture that I turned to Nathan and began to cry. She didn't notice, but still to this day, that small act means so much. When I got off the plane and walked past her, I thanked her. With tears in my eyes, I told her it meant so much more to me than she knew.

And the kindness of friends. We were all also buoyed by the financial support from those near and far that allowed us to move Mom and Dad out from their home in Yucaipa to an apartment less than 2 miles from our home. While she was still in the hospital, I would daily check her Go Fund Me page that my dear friend Delia created. We were - and still are - all amazed and humbled by what people donated. A few people I had never met contributed, and others gave anonymously. Amazingly, we raised $4,950. Without this, the move would not have happened for awhile, if at all. Our savings had already been put down on deposits for our wedding, which was 4 months away.

So much has changed in the past year. Somehow, I found a strength and resiliency that I never knew I had, or was even capable of having. Now, I rarely get upset about Mom's condition, and can't tell you the last time I cried. But back then, I could barely hold it together long enough to go to the store. When I went for a run, I cried. During a concert at the Hollywood Bowl, I cried. If you had told me that I would come to a place of calm acceptance and actually feel thankful for the time we have, I probably wouldn't have believed you. Even putting these thoughts down takes me back to that fragile time and I can't believe how far we've come. I find myself wondering how it changed, and unable to put my finger on it.

I wish I knew and could give you my secret, but I haven't "done" anything to shift my perspective. It has just been shaped by time. Physiologically, most people just cannot remain in a state of despair and stress for too long. If your natural, basic temperament is one of happiness and optimism, you will naturally progress back to that state no matter what life throws your way. Like water seeking the lowest ground. I have had the help of many friends who listened and made Mom feel special, like inviting her to our get-togethers. I made it a point to get sleep, exercise and take care of myself, but aside from that, I haven't done anything to reach this new perspective. Somehow, it just happened.

Yesterday, at Mom's intrathecal chemo. appt. She re-told the story of the bishop who stopped the processional in high mass, stepped over others kneeling to pray, touched her head and prayed over her. It was Christ the King church, the church they were to be married at years later, in Reading just outside of London. Her Mom, my grandmother Lilly, told her it meant that she had a cross to bear, and he was giving her strength.


Today, we all talked and collectively made the decision to skip the chemo she was scheduled for today. She has lost 16 pounds in 2 weeks, and is very weak. She has the Roar and Snore on Friday, several nights in San Diego, their 45th wedding anniversary, a yard sale, a move into our home and an overnight trip to Catalina Island, all in the next two weeks. We all want her to be able to enjoy it. It's a decision we all feel good about. Back then, I could barely absorb or retain what the doctor's said, let alone formulate thoughtful responses or questions and make these types of decisions.

I guess my point is this: if I can be happy and function normally in spite of all this, anyone can, in due time. Whatever your greatest fear in life is (this has long been mine), if and when it comes to you, I promise you that will find the tools to handle it, and it won't be quite as bad as you have imagined.