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 and death 2 weeks after I found out I was pregnant. Who knows what shape it will take, but thanks for being along for the ride.

Wednesday, June 25, 2014

IVF for only $3,500!? Yes, please!

It's hard for me to contain my excitement right now. At the earliest, we were hoping to come up with the cost of another round of IVF ($17,000) by December. Now, we may be able to next month! We found a clinical trial (thanks Sarah!) that gives a complete IVF cycle for only $3,500 including medication, operating room fees and even cryopreservation! Hard to believe, this is a savings of over $13,000!

It's called The Ivy Study. While it's offered nationwide, there is only one clinic in all of California accepting participants. And it happens within driving distance for me, 120 miles round trip. So far, it seems like I meet all of the requirements, and I am in communication with the person in charge of the study at this location. It's being offered through HRC, a center we had a consultation at for our last round and really loved.


Patients Wanted For New Clinical Study at HRC Encino! IVF Cycle Offered for $3,500!

Posted on in News and Events
New $3,500 IVF Clinical Study
HRC Fertility Encino has recently initiated screening in a new industry-sponsored clinical research study called the Ivy Study. This study is testing a new follicle stimulating hormone (FSH) treatment called AFOLIA comparing it to the US approved Gonal-f.  We are the only site in Los Angeles County conducting this study.
Each patient in this study would be participating in an ovarian stimulation cycle, similar to a standard  IVF cycle. This study requires frequent visits to the doctor’s office involving procedures such as having blood drawn, pelvic ultrasounds, self-injected medications and egg retrieval to remove eggs for fertilization and embryo transfer. Each patient will receive the same medical care and oversight throughout the study. Each patient may be eligible to complete up to three IVF cycles.
Other more detailed inclusion and exclusion criteria  apply, but to qualify, participants must:
  • Be between the ages of 35-42 with an FSH of <15mIU/ml
  • Have 10-20 Basal Antral Follicles
  • Have regular menstrual cycles
  • Be in good general health
  • Have not completed three of more fresh IVF cycles
The study drug is free of charge for all participants and the IVF procedure is offered at a lower cost than other options. Patients will be charged $3500 per cycle for operating room fees, anesthesia and one year of cryopreservation. The stimulation medication will be covered by the sponsor which is the vast majority of the expense of IVF cycle medications. The remainder of the medications such as Lupron, ovidrel and crinone need to be purchased by the patient.   Thus the study being sponsored is at a significantly reduced cost to the patient. You can read more detail about the study at www.clinicaltrials.gov
If you are aware of patients that may qualify for this study please contact our study coordinator Samantha at 818-788-7288 x 244 or email her at samanthav@havingbabies.com
Of course I will feel better once I sign the consent and am officially accepted into the study, which could be as early as next week.

To find a participating clinic near you, click here.

Sunday, June 22, 2014

DIY No-Sew Banner

If you're like me, you like the idea of crafting more than actually completing the projects. If I spent the time and money required to make half everything I've pinned on Pinterest, I would be out of a job. I'm hosting a surprise 63rd birthday party for my Mom on Saturday, and I wanted to make something special. This new-sew banner was easy, fun, and sort of addicting. If I have a girl someday, I hope to re-use this for her birthday. Also, I plan to make more for Halloween, Christmas, even they 4th of July!

Inside & out

Supplies:

  • 4-5 different fabric patterns, 1 yard each
  • Glue Gun
  • Iron
  • Twine
  • Cardboard for template
  • Stitch Witchery ($2.99 in fabric section of Wal-Mart)


Use a ruler to draw your template. You may be tempted to free hand, but trust me on this. Once this is cut out, fold your fabric inside out to draw your lines.



Repeat until you have completed with all different fabric patterns. Arrange on ironing board and glue gun middle to the twine. Then, take the Stitch Witchery and cut to fit along edges. Iron to seal. 
That's it!



I initially bought 1 yard of each fabric, but because I'm making several, I went back for another 1/2 yard each. The amount of fabric you need depends on how many you want to make.


Say G'Day Saturday

Thursday, June 19, 2014

BFN: Big.Fat.Negative.

Before my doctor called yesterday around noon with the negative test results, I told myself I "knew" it would be negative because of my two failed home pregnancy tests. But it wasn't until I picked up the phone and could tell by the tone in his voice that my heart sank. I guess I had been holding out hope after all. 

Luckily, the school year is almost over and yesterday was an early out. As my husband and I were driving home (we are fortunate to work at the same school), he assured me this is just part of our story. In the 7 months we have been married, we've been through a lot and I believe it is pulling us closer and providing us with a much more solid foundation than if everything were hunky dory. In a few years, I think we'll look back and be amazed at what we went through.

He then agreed to go on a 3 mile run with me, something he hates doing. I have to talk him into it when he's feeling well, and right now he's sick and I only had to ask once. He knows that running is my panacea. I don't always like running, but I love how I feel when I'm done. It has been so tough not being able to exercise at all during this two week wait, because running is my go-to activity when I'm stressed or sad.

Yesterday, before our run.

And so we set out on our run, knowing that this problem would seem a little smaller when we finished. I tell my students "You get magic chemicals in your brain that make you feel better when you exercise" (endorphins) and I do practice what I preach.

Thanks to the advice from some awesome TTC women on instagram who are in the same boat as me, we started formulating our next mode of attack: IVF abroad, where costs are much lower and, you get a vacation out of it! For what we just paid, we could have had two or three trips to the Czech Republic at THIS facility. We are also looking into a place in Cancun, and have a phone consult appointment today. They even offer a warranty: If your 1st treatment doesn't work, your second one is free. There are also clinical trials, like this one, that pay for the majority of the IVF cycle!

So, hope is on the horizon. But I still hate waking up the day after bad news. It hits you all over again, and this morning was no exception. "I'm not pregnant" was the first thing on my mind at 5am. So instead of laying there thinking, Trevi and I went on a 3 mile walk. I am determined to get in the best shape of my life this summer, so that when I finally do have a baby bump, it'll be a really cute one. Onward and upward, right? What else can you do.


Wednesday, June 18, 2014

Father's Day & Dream Foundation Wish Granted for Mom!

I have to confess that since Mom's diagnosis, Dad has been a bit neglected. He's never uttered a single complaint, but for the last 10 months, our world has revolved around Mom. I see Mom almost every day, and it's always about her. I have managed to work in a few coffee dates with Dad, but other than that, I ask Mom what she would like to do (thrift store, nails) and once we're done, it's often time for me to go home.

Father's Day was a good reminder that it's time to shift the balance. We kidnapped Dad, and didn't tell him where we were going. On the 1 1/2 hour drive to San Diego, we had fun "accidentally" revealing what we were doing: Legoland waterpark, Tijuana, doing a ride along with boarder patrol.

Originally, I was going to just take Dad, but Mom and my brother wanted to "get out of the house," even though we really couldn't afford their admission.

Dad was a Sea Scout when he was 14 and lived in San Francisco, and ships and sailing have been a life-long interest of his. Years ago, when we were exploring Balboa park, Dad saw a sign for the Maritime Museum mentioned that he would love to go there, but we never did.


View of the Russian submarine.
I picked this activity because I thought he would like it. I wasn't expecting to enjoy it myself. I realized I was probably going to when we parked and the "museum" was actually a collection of different ships and submarines that you board and explore.

My favorite was the Star of India, which first set sail from the Irish Sea in 1863 is the world's oldest active ship. It has circumnavigated the world 21 times, spending a quarter of a century transporting emigrants from England to New Zealand.


Old + new. The Star of India
Mom and Glen waited along the water and people watched while Dad and I hopped from ship to ship. We stopped briefly in Old Town before heading home, skipping all of the expensive restaurants, and opting to eat at home. Mom could not stop talking about what a lovely day it was. She loved the sunshine and scenery...even though it wasn't anything she wanted to do. She's that content and easy to please.



On the ride home, my thoughts drifted toward all of the things I would like to do with her this summer, but can't because of the cost of IVF. I'm not going to beat around the bush here: IVF cost us $20,000, some of which we are still paying back. I took my blood test this morning, but don't expect it to be positive because two home tests have been negative. This means we will need to do it again. Knowing this, I told Mom "we will do a day trip to San Diego this summer!" And of course, she was happy with that.

But I had almost forgot that I applied for a Dream Foundation wish for Mom months ago. It is an amazing organization that makes dreams come true adults facing a life-threatening illness. I didn't even realize that they had put Mom's Dream up under their Adopt a Dream section. When I submitted this, I hoped, but did not think, we would be lucky enough to have her wish granted. I imagined there were hundreds, if not thousands, of requests, all very deserving. 

They called this week to say it was granted, and I was over-the-moon elated! A family in San Francisco chose to adopt Mom's wish, and raised part of the funds by hosting a yard sale. The foundation asked if it would be alright for the family to present the wish to Mom, and of course I said yes. I have not ruined the surprise, even though it is a tough secret to keep!

Mom is going to be so surprised! When I told her I was filling this out, I asked her: If you could go anywhere for a long weekend, where would it be? She said San Diego, to the Animal Park. She has no idea that they have a Roar & Snore Safari, or that I put the request in for that! This is so much more than just spending a day in San Diego, and will coincide nicely with their 45th wedding anniversary! I am so happy that we get to meet the family who did this, so we can thank them. When things are not as tough, Nathan and I plan to give back and adopt a dream for someone else.



Adopt a Dream

Paula

 Diagnosis: Lung cancer




Paula
"To visit San Diego with her family"
While her children were growing up, Paula, 62, sacrificed luxuries such as a car and the ability to take her family on vacation because of her desire be a stay-at-home mom and care for her two kids, one who is disabled. Determined to be able give her mother a reprieve from financial strife, Paula’s daughter put herself through college and graduate school in order to help her parents pay their bills and treat them to little getaways every now and then: things she never experienced as a child. But with mounting expenses related to Paula’s cancer, the money her daughter contributes can no longer go toward anything than medical bills and rent. Having lived a whole lifetime not once being able to give her family a vacation, Paula longs to do just that. Her daughter says, “The idea of getting away appeals to Mom because she knows that if only for that brief time, she will not have to go to any doctor’s appointments. She wants to visit San Diego because ‘it isn’t too far, but it’s a different world.’” Paula hopes to enjoy a few days out of town with her beloved family and visit the San Diego Zoo Safari Park.
Paula is 62 years old and resides in CaliforniaDonate To This Dream!

Wednesday, June 11, 2014

Service to Others

On one of our first dates, my husband asked me what I thought the purpose of life was. Because women talk up to three times more than men, my answer was more wordy than his. Ummm, to have fun, to leave the world a better place, and to be a Mom.

His response was simple: Service to others.

He wasn't kidding. While other guys I dated would have balked at picking relatives up from the airport, Nathan woke up at midnight and drove through the night to take my Mom to Stanford for a second opinion. They were on the road by 1 am, and arrived shortly after 7 am, a little early for her 8:30 appointment. She also had a 9:30 appointment, and then sees a different specialist tomorrow morning, and before they turn around and head home. 

Originally, I planned to go, but my doctor didn't want me traveling by car that long four days post embryo transfer. Nathan didn't object or hesitate. Actually, when I originally set the appointments, I asked if I should wait until we were out of school. He told me that it was too important, and asked me to schedule the first available for her. 

For those of you new to my blog, Mom has cancer in four or five different areas, including her brain. Awhile ago, we started the lengthy process of obtaining a second option, at the suggestion of Nathan's cousin, who is a doctor. And if you're going to jump through the hoops required to obtain a second opinion, why not go for the very best? She recommended Stanford and even prepared us for the consultation with the following questions (skip over this if, like me, medical lingo is not your thing).

STANFORD CONSULTATION

AIM:
-To assess possible treatments to extend life in hopes of seeing first grandchild
-To have case presented and evaluated at the tumor board
     *Pathology evaluation
           Primary site of cancer is based on clinical impression, not on pathological diagnosis
           Biopsy from initial cerebellar mass:  Metastatic carcinoma, primary site unknown
                 - Concerns: Napsin A not ordered, TTF was negative
                 - No histologic subtype diagnoses and possible inadequate molecular testing performed
                 - Question whether second review of initial slides/paraffin blocks could assist in making a histologic diagnosis, which could help personalize treatment for the cancer better
     *Oncology evaluation
           Currently reached lifetime limit of the carboplatin chemotherapy
           Interested in seeing if there are any clinical treatments or other options available that can help
     *Radiation oncology evaluation
           Responded well to GammaKnife for brain lesions
           Interested in seeing whether cyberknife could be used for lung mass
     *Radiology evaluation
           Clinical suspicion of spinal cord metastases (all spinal taps been negative), would MRI be helpful
           Whether pancreatic and adrenal nodule is metastatic lesions or not
           Are there any new metastases
-Currently have double vision, cause unknown, would like consultation with correct specialist to address if there is any treatment available to lessen the symptom

I will forever be glad that we heeded her advice. Their two meetings today went really well, and Stanford has a difference of opinion on both the cause and treatment of her double vision! This has been the one side effect that affects her quality of life the most because it's so bad, that she has to keep it covered with a patch. It not only affects her ability to see, but also her balance.

The first meeting was with the neuro-oncologist. He is proposing that she stop the chemo that is being administered intra-cranial through the port in her head and instead have the area behind her optic nerve treated with radiation. They believe that if the optic nerve has not been too damaged, it could respond and recover. Also, they think she may not have cancer in her spinal fluid, an exciting prospect. Even UCI has admitted that there is no "proof" cancer cells are floating in the spinal fluid, as both spinal taps have come back inconclusive. Instead, it is a theory based on her clinical symptoms (not being able to see and pain behind the eye).

The oncologist they met with after the neuro knows and respects Mom's oncologist, but does want to find out why she started and then stopped an effective chemo that was only administered once.

Next steps: Mom, Dad, and Nathan meet with another doctor tomorrow morning and then on Friday, her case is going to be brought before a tumor board. Experts in each different area are going to meet and review all of Mom's information and come up with a proposed treatment plan. They will give us a copy of these notes, and also be in communication with her care team at UCI, and coordinate the treatment plan.

Mom is nestled in her bed right now at her hotel in Silicon Valley, tired from the trip through the night and the long day. I really wish I could be there with her, but I know that I we will both sleep soundly tonight, comforted by this new information. Cancer takes hold and shakes you to the core. It takes away so much of your power and your decision-making abilities, but there are still things you can control. Taking charge of her medical care has brought me some peace of mind. What could have weakened my new marriage has only served to strengthen it because he, and his family, have been there every step of the way.

When the brain mass was first detected on a scan in the ER he immediately made plans to fly home the very next day, and his Mom and brother TJ sprung into action, researching better places for her to be transferred to. I never would have even known I could ask for that, and the horrible county hospital in Moreno Valley tried to dissuade us because they didn't want to loose her (she has good insurance). But with Nathan's support, we checked her out, against medical advice, from a place where prisoners, chained, were walking down the hallway and drove her to the emergency room at UCI where she immediately started receiving a higher quality of care.

I could write a blog entry just on that horrible ordeal; what they did to us was criminal. They lied to us and told us the insurance approval at a different facility wouldn't happen in time for her to get the surgery she needed. That if we took her somewhere else, she could die in transport, (they refused to transport, so we drove her ourselves), or, a new place may send her home (with a brain tumor = can you imagine!?) because they had given steroids to reduce swelling. They told us there were no neurosergons at UCI due to a conference in Hawai'i. They even said she may not be scheduled for surgery at a different facility until it was too late.

At UCI, she had the surgery two days earlier than they were planning. Mom believed and trusted all those doctors, and I had to plead with her by saying Mom, its brain surgery...I wouldn't even want stitches here. She relented when her would-be brain surgeon, whom I had never actually met (Dr. Beamer), came in and told her Your daughter doesn't like me because he found out I was pushing to have her transferred. I have totally digressed. Suffice to say that although it has been tough, it has been a good fight, and I have learned so much. In doing this, we have taken some control and regained a tiny bit of what cancer took from us.




Monday, June 9, 2014

Parenting Interview with Mom


I have always wanted to be a Mom. I can even remember dreaming about it when I was in elementary school. Now that we have begun the IVF journey, imagining being a Mom conservatively occupies at least half of my waking thoughts. I find myself reflecting on different parenting styles I've read about and studied in my developmental psychology courses, and of course my main template on how to be a Mom: my own Mom, who has always had the patience of a saint.

There are a ton of theories and parenting styles out there. I'm currently reading a lot about RIE and loving it. But for every study "proving" a certain idea or theory is right, you can find a different study showing that your child will end up in prison if you follow it. I imagine that it could drive any new Mom crazy, and I don't want that to happen to me! While there's nothing wrong with reading different tips or techniques, there really is no right or wrong way to parent, as long as you underscore everything you do with love and attention.


Mom has always said that you cannot spoil a child if they have enough love and affection. Children who are "spoiled" are ones who are given material things instead of what they really need: your time. And time was something Mom gave in abundance. She was a stay-at-home Mom, and always there when I returned home from school. I don't remember her ever yelling or even raising her voice; not once. Some people think that if you don't discipline children enough, they will be defiant. But my brother and I never were. We didn't do things wrong, not because we were afraid of getting in trouble, but instead because we didn't want to let Mom down. 

While I remember a lot about my teenage years, and know that Mom remained my very best friend by listening and always being interested in what was going on in my life, I obviously don't remember anything about how she parented me when I was a newborn and toddler.

And so, I decided to interview her. Rather than just reading parenting books, why not glean some tips from the very best?


What did you love about the infant stage?
Well with you, it was coming across country when you were two weeks old and we camped. I loved the clean clothes, the smell of baby powder, talking, and holding you. I loved the fact that I was a mother. I loved holding you the most. You may have been a few months old and I would take vegetable oil and rub it into you skin. I think that's why you like massages.

How did you handle the lack of sleep?
It was okay - I just feed you every 3-4 hours and I didn't have to go to work so I could just relax on the couch if I was tired.

Some people believe in letting babies cry. Do you?
I always picked you up because there is a reason you cry. Babies don't just cry to cry, they are uncomfortable for some reason. Hungry, wet, or even just bored.

What did you love about the toddler stage?

I loved picking out outfits and sewing us matching outfits. I kept you busy when I was sewing or knitting; you were always in sight with your toys. Up on Vineyard, we used to play school. We would make the bed together and sing the alphabet, finger paint, and you loved it. I tried to prevent accidents rather than have one. I put pillows around when you were crawling. And Dad put hooks on cupboards when you could walk, but you got into them anyway. So I moved any cleaners up high, and let you play with pots and pans. I don't remember saying "don't touch." You started walking on your birthday. I loved seeing you getting older. It went by too quickly.

What was difficult of challenging? Do the "terrible twos" exist?
No. You were no different at two than you were at one or at three. Like today, I was at the MRI and I looked at this mother who has a baby and her daughter who is about 3 is pumping hand sanitizer. The Mom was so focused on her iPad that she was ignoring her. Then daughter came over to rub it on the Mom's arm and the Mom stops, annoyed, and yells what are you doing? And then goes back to her iPad. And I think that even before iPads, people were like that. Attention is what is important. When children don't get enough, that's when they act out and do anything to get attention, good or bad. In the old days there were distractions too, like the newspaper, telephone, cooking, etc.

How did you potty train me?
I just let you follow me into the bathroom. There was no potty training. I put your potty down, and if you wanted to use it, you did. You were two when you were trained. There was no pressure put on you to use the toilet and you learned by observing. During the day, you wore knickers.

Give me an example of a time I did something wrong, and how you handled it.
When you hid under a turn-style thing in the store and I thought you had been taken, I yelled because you scared me. I can't remember anything else.

So, safe to say I didn't do anything wrong?
I can't remember (laughing).

Okay I must not have then, moving on.
We just got along. We were like friends when you were a baby. We were pals. I had company. I didn't have a Mom or Dad there or any siblings in the country, and Dad was at work. I just was with you. In high school it was even more important. We would sit for two hours, talking about your day. I didn't make time for you, I just had time for you. I wanted to know whatever you wanted to tell me.

What did you love about the elementary school years?
The involvement. You were doing so good, and I was excited about how much you were learning. I would get the house clean and you would come home and have pictures, and I would put them on the fridge. You would get your pictures taken twice a year and I loved sending them to Ireland and England. When you were in middle school, I wanted to bake cupcakes for the class on Valentine's Day and you said no. It was too mushy, but in elementary school, I could do all of that. I loved making favors for school, like when Glen was in 1st grade and I made every kid in his class a ghost hand puppet out of white sheets.

Any other advice?
Just have patience. It doesn't mean give in to anything, but everything is a learning experience. Even a trip to the store, feeling and touching the fruit. You've waited so long for the baby. When the baby comes along, the newness wears off but you have to keep you commitment and be there for what is now your best friend. Appreciate the time because it goes soo fast. They fly by, so enjoy them.





Sunday, June 8, 2014

Embryo Transfer Day!

I woke up excited and nervous yesterday because, after months of planning and waiting, it was finally transfer day! But I was more nervous than anything. When we had the egg retrieval on Wednesday, there were seven eggs. Of those seven, only six fertilized. Of those six, only three were normal at our last update on Thursday morning. For that reason, our doctor was recommending a transfer on day three instead of on day five. They had been left in the incubator since that call on Thursday morning, and I was anxious for an update. I was worried that we would only have one or two left.

At 8am I started drinking 20 oz of water which I was to finish by 9am. I took Trevi on her morning 1/2 mile walk, something I never miss, but was going to have to skip for the next three days. At 9am, I took my valium and Aleve. I didn't think I felt any different until we were walking to the car and I mentioned that we no longer had dandelions in the front yard. Nathan, who doesn't really know  much about gardening, responded matter-of-factly that it was because there hadn't been as much sun. The certainty with which he said it was hilarious to me, and I found myself laughing more than usual. That's also when I noticed with surprise and relief that I was no longer nervous.

Do you think they look more like me, or Nathan?
We were called back into the room and I could tell the moment that Dr. Werlin entered that he had good news. Three embryos not only made it through the last two days, but he said they looked really good! One had 8 cells, one had 7 cells, and one had 6 cells. On a scale of 1-4, with one being the best, he said they were a 1.5.

It was time for the transfer! Through the use of an ultrasound, we were actually able to see the three embryos leave the tube as they were transferred, which was pretty incredible. They looked like little orbs of light; like shooting stars as they were deposited. One, two, three. I rested for the next hour, and Nathan was given a demonstration on my new injections. My other shots were just subcutaneous, but these new ones would need to be given intramuscular and he had to give them to me.

When I got home, I was still drowsy from the medication and thankfully able to sleep from 1-5pm. Around 7pm, it was time for my two shots: 1 ml of progesterone and .2 ml of estradiol valerate. I'm also taking 4mg of Medrol four times a day, 100mg of doxycycline twice a day and baby aspirin every evening. I was really nervous about the new shots, but we iced my bum for quite awhile first and I didn't feel a thing! It was so pain free, that I questioned if Nate had administered them correctly.   

It's my second day of bed-rest and I'm doing my best to keep busy. I'm alternating between episodes of Derek, reading, crocheting and watching Investigation Discovery. It's really frustrating having to ask anytime I need even a drink of water. At least Nathan is home today...but it's going to be tough still being on bed rest all of Monday and Tuesday while he's at work. I'm also not able to go to Stanford with Mom, Dad and Nathan late Tuesday night for her three appointments on Wednesday and Thursday. My doctor seemed on the fence about the seven hour drive through the night and so we are not going to chance it. If they are going to implant, it will be within five days of the transfer, and if they don't, I don't want to wonder if it was because of something I did.

I'm cautiously optimistic that at least one of these three embryos will stick, but of course there is no guarantee. And we don't have any leftover embryos to try again like we thought we would when we started this whole process. If we're not pregnant, the hardest part will be telling my Mom who just the other day said she wants to live long enough to hold this baby in her arms. I can handle a negative test, and I know she can too...but, the toughest part would be giving her that news. So, until the test on June 18th, we will hope and pray for the best.

AmateurNester

Friday, June 6, 2014

Hey wait a minute! That's OUR hope! (Mom update - Part 2)

I'm sitting here typing the second update of the day with a huge smile on my face, having just returned from Mom's, and just receiving some good news. After our meeting with Dr. Ou (her general oncologist) yesterday, I emailed her neuro-oncologist Dr. Carrillo. I wrote:
Date: Thursday, June 5, 2014
To: "Carrillo, Jose"
Cc: Nathan Swanek
Subject: Paula DeWitt

Dr. Carrillo,
Is there any way my husband and I could meet briefly with you – even over the phone? From what we gathered from our appt. today with Dr. Ou, there may not be a point to treating the cancers in her body when the brain is progressing so quickly. Let me know if this would be possible to arrange. Thanks so much.
Megan
To which he responded:
Hi Megan,
I would be glad to talk over the telephone with you some time today. Unfortunately, upon my return from the conference my schedule has been quite compressed, so a call might be best. Would later on this afternoon be okay? Let me know what times work best for you.
 
Thanks,
Jose
 
Jose Carrillo, M.D.
Neuro-Oncology
Assistant Professor of Neurology
Director, Neuroscience Clerkship
UC Irvine Health
714-456-7214

He called my husband and I after 7pm while we were hanging out at my Mom's. We took the call outside, put him on speaker phone, and were prepared for some tough answers to our tough questions. I had started to think that maybe Dr. Ou knew something we didn't: maybe her brain metastasis were spreading or growing at an alarming rate and no one had told us. If there were new recent developments, we needed to hear them. What he gave us instead was a replenishment of the hope Dr. Ou stole from us.

Dr. Carrillo started by saying that when he received my email stating Dr. Ou wanted to stop treatment, he was confused as to why he would say this. Dr. Carrillo said he thought maybe there had been a recent development in her body (she has had no recent scans) that he wasn't aware of, and cancer had progressed to a point where treatment wasn't an option. Mom has, in fact, been responding to the intracranial chemotherapy.

He said the only thing he can attribute it to is different philosophies; he believes in aggressively fighting cancers, and he believes there is a point to that. He said he has to hold on to hope, or he would not return to work each Monday. Furthermore, the cancer in her brain is currently stable, evidenced in the amount of proteins and sugars in her spinal fluid. Metastatic brain cancer is always a serious condition...there is no way around that, and it will not be cured. But Dr. Carrillo agrees there is a point to managing the cancer in her body, and that the two need to work together to keep it under control.

I walked back into Mom's place with a huge smile on my face and some reassuring words for her. Dr. Carrillo also understands and supports our efforts to change to a doctor who is more aligned with this philosophy. It's strange how in the span of a few hours, Mom's condition hasn't changed one bit, and yet we are all smiling again. The only thing that is different is the interpretation, and delivery of the exact same information from a different view-point and with a different style. It's far from a cure, but for right now, I'll take it!
 

Hey wait a minute! That's OUR hope! (Mom update - Part 1)

Sometimes, when you're an advocate for medical care and don't just go along with anything and everything the doctor throws your way, you upset them. If that happens, it's time to switch doctors. A good medical professional should welcome and understand questions, and be a partner with you in your care. Though they are the trained professionals, they no doctor is an expert in every area. Often times, they know a lot about one specific area or treatment, and little about others.  

On Monday, I received a call from Anna, the new nurse of Mom's oncologist, Dr. Ou. Mom was already at UCI Medical getting her blood work drawn for chemo. that she was expected to receive that day. Mom had an appointment with a nurse practitioner that was filing in for Dr. Ou, who was out of town. Anna was calling to let me know Dr. Ou had decided to hold off on chemo until he saw her. Knowing Mom was there and waiting for that, I questioned why she would need to come back when he was there, and couldn't be seen that day as planned. Her response was a blatant: Dr. Ou wants to stop chemo on your Mom.

Now, let's back up a bit. Mom has two ways that she is receiving chemo: in the port in her chest (for cancer in her lungs, adrenal glands and around her pancras) that Dr. Ou orders, and through a port in her head that Dr. Carrillo or Lindsky order and administer. She also has her brain lesions periodically treated with gamma knife. Mom has not had the systemic chemo in her body for at least three weeks, because they had to install the Ommaya Reservoir in her head and it needed to heal. Last scans of Mom's chest showed that her lung mass had increased in size, and a new chemo was ordered.

So this news of abruptly stopping chemo came out of left field for me. And it was especially shocking that the decision already seemed to have been made, in a vacuum, without Mom's input. I mean, I get if the chemo is robbing you of your quality of life, but until now Mom has been tolerating it well. Though it has zapped her energy in a way I'm not sure I cannot fully understand, she still has a great appetite, is rarely sick, and is still staying strong, optimistic and positive.

So, I told Anna that I did not agree with this, and that Mom should be a part of the decision. I asked why they were planning to abruptly stop, when she hasn't had any chemo or scans recently. Presented with that info., I explained, Mom may decide to stop chemo., but it should be her decision, not ours to make without her. And I told her I do not want her to wait to see Dr. Ou. 

That's when Anna lowered her voice, and as if speaking to a child said: Megan, your Mom is very sick. Being in denial doesn't help anyone. My reaction was to actually laugh at her and respond with: Ummm...Mom is more than "very sick" she actually has cancer in her 5th area and none of us are in denial. She said she would have to ask Dr. Ou if this would be okay. When she called me back she said he reluctantly agreed. Turns out, Mom wasn't well enough for chemo anyway, and had a transfusion that day instead.

I sent Dr. Ou the following email:
> On Jun 2, 2014, "Megan H. DeWitt" wrote:
> 
> Dr. Ou,
> I hope this finds you well. Anna called me today to say that we are stopping chemo after this round on Mom? Anna told me Mom is very sick, and that living in denial doesn't help anyone. My response was that Mom is more than sick...with the cancer in a 5th area, her spinal fluid, I recognize now more than ever that she will not be cured.
> 
> I am not holding out hope that any treatment will cure her. At this point, the most I am hoping for is for the cancer to be kept at bay and maybe buy us some time. Of course we do not want to do this at the expense of the chemo killing her. But so far, this new chemo has few side-effects when compared to the previous one she was on.
> 
> If we are to stop chemo, would it be possible to help Mom reach this decision herself, after scans show this new chemo isn't slowing the growth? If her side effects are too bad, or if the scans show the growth isn't being slowed, then I'm sure Mom will make that decision. I just hate to have the decision made without her input, and without scans. Thank you for your consideration, and we will see you soon.

To which he responded with: 
-----Original Message-----
From: Ou, Sai-Hong [mailto:siou@uci.edu]
Sent: Monday, June 02, 2014 1:00 PM
To: Megan H. DeWitt
Subject: Re: Paula DeWitt DOB 6/28/1951

Megan: we will give the chemo today and next week. We are not stopping chemo abruptly. I will discuss with her about the outlook next week but we won't stop chemo unless it is her decision. Ignatius

Sent from my iPad Air 
This was a reasonable response, and set the stage for yesterday's appointment. An appointment that didn't go so well. At this appointment, Dr. Ou seemed to have one mission: to ensure that Mom had no hope. But it is this hope that has carried her along all this time. He told her that the chemo was not going to work (something no one can say or predict) and that he, and UCI, were "Happy to keep taking her money if that was what she wanted." So we reassured him, again, that we were not looking for a cure, but that if the chemo continues to be well tolerated, and it can at least possibly slow the growth, we want to continue.

Everything seemed fine until I expressed frustration when Anna said Mom was not on the schedule to go get chemo. That is how it has always worked in the past: appointment with Dr. Ou, followed by chemo. All I said was "Why isn't she on the schedule for today?" and Dr. Ou looked at mom and threatened to take chemo away, looking directly at Mom (who had not said a word) saying "If you are upset by these appointments changing and are bothered when it is delayed, maybe you should stop the chemo. One day doesn't matter."

I felt like I was in a twilight episode, and addressed him ...explaining that she was not upset, I was the one who made the comment. He didn't really respond and wrapped up the meeting. Then, his nurse came back in to apologize saying he did not communicate with her to book the appointment.

And for this reason, we are switching doctors next week, after Mom receives two additional chemo treatments: today and next Friday. Luckily, there had been a social worker in the room who picked up on the miss-communication and semi-volatile relationship between doctor and nurse (who seems to say something negative behind his back regularly, once telling me "he is angry today") and has navigated the process for us. I emailed her our decision today: 
---------- Forwarded message ----------
From: Megan H. DeWitt <megan26.2@gmail.com>
Date: Fri, Jun 6, 2014
Subject: Re: Housing List
To: "Huhnerkoch, Andrea" <ahuhnerk@uci.edu>

Annie,
Can you send this to Jennifer too? I spoke to Mom this morning on my way to work and the first thing she said was "I'm angry with Dr. Ou for saying that the hospital will just keep taking my money - there is no problem with that and then how he laughed."

We do want to move forward with switching doctors, but we are both afraid that if Dr. Ou finds out before next Friday, it could jeopardize the chemo planned for today and for next Friday. We will call the number next Friday while she is in the infusion center to schedule a follow-up with Dr. Klempner. Even if he will not do anything different treatment wise, we feel at the very least his communication and bedside manner have to be better. 

Dr. Ou's mission yesterday seemed to be to make sure that Mom had no hope. Hope is important throughout all levels of care, in my opinion. She is not in denial, or holding out for a "cure" - none of us are, but she certainly does not deserve to be treated like she was yesterday. Also, his working relationship with Anna is concerning - she seems to say bad things about him behind his back often. She even did this yesterday, saying that he did not communicate to her.
She responded with: 
---------- Forwarded message ----------
From: Huhnerkoch, Andrea <ahuhnerk@uci.edu>
Date: Fri, Jun 6, 2014 
Subject: RE: Housing List
To: "Megan H. DeWitt" <megan26.2@gmail.com>


Hi Megan,

I will forward this to Jennifer now and she can follow-up with you and your mom.

I can understand your feelings as well as your mom’s … I like to say “realistic hope” is always needed. J

I hope your mom’s chemo goes well today.

~Annie

We feel much better with this plan in place. We may not have control over a lot, but we sure the heck do have control over how we are treated. To think that doctors are the experts and must be listened to without question is a dangerous viewpoint. Always remember: you have decisions and choices, and you can advocate for yourself or your loved one when you are not being heard, or when decisions involving you and your medical care are made without you. Or when you're just not treated with the kindness and dignity that everyone deserves. Seeking a second opinion should be encouraged, not frowned upon, and you should never have to walk on egg shells around someone directing your care.