Seeing the glass half full

Today I'm grateful for...
My iPhone (I don't think that I've purchased anything in my life that I love as much as this?)
Swimming time with my boys
Holding Baby Lourdes
Having great dinners brought over (that I can't eat due to my foolish pact)

Yesterday was a quiet day. Both Lulu and I saw Baby Lourdes at different times in the day. I worked at the office until 1 PM then ran to St. Mary's for some Lourdes and Daddy time (a lot of it was Lourdes and sleeping daddy time). I stayed until 3 PM, then I needed to pick up the boys from Science camp. Lulu had gone in the morning for some Mommy and Baby Lourdes time (I'm guessing with the resent chemo treatment she was doing some sleeping as well?). Lourdes did well for me, only dropping below the 85% O2 saturation level a few times. She was recovering with these desaturations much quicker then even days ago. She's getting 36 cc of the formula alternating with Lulu's breast milk every 3 hours. The super fantastic NICU nurses told me that she had gained more weight. All I know is that every time I see her she looks more like a little girl and not like a premature infant (and she gets more beautiful each visit).

Lulu said that she felt almost normal today (? what that means, but I'll take it as good?). Tomorrow she has a appointment with the oncologist here in Reno. So, if she has any issues with her chemotherapy while here in Reno, she has a local doctor to take care of her. There also maybe a chance that she will move up here to Reno for a part of the chemotherapy regiment and not have to make the 4.5 hour trip twice a month? I think that she also mentioned she was getting fitted for a wig tomorrow (let's just hope it's not the strawberry blond one that I posted her wearing last week?

Thursday started with me dropping the older boys off at Science camp and then making a trip to the DMV. I've been using a driver's license in which has the address cut off (error on the DMV's part) for the last 5 years, and just now forced myself to do something about it. I think that through those 5 years I've been asked more about what's my address and zip code, then what's the J. stand for? (for those of you that don't know I spell my name J., and it gets quite a few inquires about it's origins). But the real reason that I brought this DMV think up is that I ran into a past employee of Dentistry for Kids that has been working in the DMV since leaving our office 5 years ago. It was nice to see her and share some of the events in both of our lives (well most I told her about having 4 kids now, and Baby Lourdes, Dr. Molina's cancer, and my back surgeries). I sometimes feel like I'm telling a fictional story of someone else's life? It doesn't seem real that all of this has happened to our family in the last two years!

I see the glass as mostly full though. No matter what negative, depressing, tragic, or upsetting things that happen in life; you can always find the positives out of all the craziness. This is why I have been keeping a gratitude journal. I give most of my days 5 stars (the highest possible number) because I can see how daily events positively effect my life. I've had this conversation with Lulu (A big part of those 5 stars) and she took this one step further. She thinks that everything happens for a reason and all that happening in our lives in just time will make since why God has given us the challenge? I couldn't agree with her more (but I wouldn't ever tell her that).

I met Lulu at 4:00 PM at the Oncologist's office near St. Mary's. After a brief time in the waiting area (15 minutes, not bad. I just had to get that in here), we were warmly greeted by the nurse that took us back to the examination room. I'm really impressed with Lulu's ability to regurgitate the details of her cancer diagnosis. This also makes me understand that she has a grasp on her unmitigated circumstances. I'm there for support, and rarely say more than "I'm J." after she says this is my husband. I'm learning some things that I've never been able to understand; and that's you can learn more from listening then opening your mouth and speaking (man is it hard). After the history of the diagnosis, doctor's examination, and all Lulu's questions being answered. The oncology doctor ask me, "are you OK?" I knew exactly what he meant, but Lulu thought that he saw me squirming in my chair and she answered that I was having back issues and I had difficulty sitting still. But I knew that he was more interested in my mental status dealing with my loved one's cancer diagnosis? I wanted to say, "No I'm not Ok, how does one deal with the fact that their best friend, lover, confidant is going through this life threatening battle with a heinous disease like breast cancer." But I just said, "nothing", that's much easier then the truth!

Now that we had a local source for Lulu's healthcare, if needed, we both felt more at ease. (by the way the whole experience was very nice). Lulu also shared that just this morning UCSF had called about scheduling the biopsy for the mass that the MRI had found last week while we were there. She had scheduled this for the day before the next chemotherapy treatment (which is next Friday the 24). I had been thinking about the hotel arrangements for this next trip down. I was thinking of contacting one of my cousins that lives in the city, and see if his place was open for us next week (just in case the "rusty door" is full?).

Two things that will help me to sleep better tonight are: 1. How great friends and family have been in our time of need, and 2. How good Lulu's been doing in her first week since starting the chemotherapy.

I can't express enough gratitude for both of these being true!

How many tests does lulu endure???

Lulu's been asked to be a subject for a cardiology test here at the main campus at UCSF;Parnassus. The cardiologist is discussing the specifics of what the study entails and whether or not Lulu might want to participate.

The biopsy this morning lasted over 2 hours. Lulu told me that they were very thorough and that they were very concerned about the cancer cell's appearance or morphology. They also had difficulty in getting to one of the lymph nodes that seemed to be deep in the area under Lulu's arm. The results of the biopsy will be discussed with the Oncologist at tomorrow's 11:30 AM appointment.

I never knew that there were so many different types of test done for cancers, but I have learned a lot of new things these last two months that I never should of had to discover. Our day started at 8 AM MRI and hopefully end sometime around 6 PM. (Lulu's been poked for blood or for injection of radioactive dyes 5 times in one day, and will have at leas two more during tomorrows schedule). I told her that we had better get the word out that she has a medical condition, because if not people are going to think that she's a heroin addict!

I'm hoping that Lulu so tired after the day's testing regiment that she'll sleep really well and I will not feel guilty for the rusty door motel?

MRI of the right breast

We rush from the first floor MRI area at the clinic to the second floor, so we could get Lulu to the Biopsy appointment at 10:00. She's tells me that she's very nervous. I ask her if something happened in her MRI that she wasn't expecting? Lulu said, "No, I just realizing the importance to all these test and how they will effect our future." This is the first time I have seen her scared, truly scared about her condition.

As I write on my computer, I'm thinking about how scary all this is for me, and I can't even imagine how my wife could feel? Luckily, there's only a receptionist, and one other patient sitting the the waiting area, because I'm crying thinking this as I type away at the keyboard.

We still have the Chemotherapy training and the MUGA tests to get through today, I hope that I get a dose of courage at lunch time?

Checkin at UCSF cancer clinic

Today I'm grateful; for...
Spending quality time with my wife
Safe trip to SF
That I'm healthy
That my kids are healthy
That my wife will get healthy with God's help

We made the trek from Reno to SF last night. Lulu's younger sister, Ibis and her three daughters arrived from Texas around noon. I was at the office so I could help pick them up from the airport (I'm sure the van was full anyway?). I left the office at 1 PM to get to the NICU to hold Baby Lourdes for an hour before taking off to SF.

When I got to the unit Lourdes was in her Giraffe incubator (now days I was told the nurses call them isoletes) and was sleeping. She does a lot of sleeping, and let me tell you that she is very cute with her pick pajamas and matching hat. Her oxygen requirements have gone down form 4 liters/hour to 3 since yesterday (another one of those small victories that we have learned to celebrate). The nurse gives me the days and previous night's satis report; "she had a good night, she only desaturated two times and had one bradycardic episode. She is up to 3.1 pounds and is now taking 24 cc of breast milk ever three hours with no residual." They always say things in a way that makes my heart soar. The nurses could report that the baby had grown a third eye, had lost all her long black hair, and her nose feel off during the last shift and they would say it in such a way that I would have thought that it was the best thing that could have ever happen to her! She also told me that yesterday's nurse had taken a photo of Lourdes without her nasal cannula and had framed it for us and gave it to my wife earlier that day. In the 5 weeks since she was born, we had never seen her without some sort of breathing apparatus. I couldn't wait to see it. These are the type of things the St. Mary's team does that are above and beyond the expectations. I know that I've said it before, but these little things make the experience more tolerable.

Today is a big day, Lulu's schedule today is for a 8:30 AM breast MRI, 1 PM chemotherapy training, and then at 3 PM something called MUGA (which I understand is a heart function test needed before they start her on the chemotherapy treatments.

Right now she is getting the MRI done. I'm praying as the machine looks at her breast tissue it doesn't seeing anything more than we already have been told (three right breast lesions, one=2.3 cm lower breast deep into the chest muscle wall ; two=.5 cm upper breast tissue; and the three lymph nodes in the right axillary arm area. I'm hopeful that the previous test could be wrong. I'm saying a little prayer for her as she probably has some scary scenarios running through her head?

The rusty door

We have arrived to the hotel in SF at about 9:30 PM. Lulu and I are joking with each other about the accommodations. I found the hotel on priceline.com (first time that I ever used the service), and was lured by the price $65/night, plus taxes (which I think in California are about 1500%?). I was mumbling something along the lines that we have been spoiled, and that now that we have lots of pending medical bills and lost income from her no longer at the office, we have to be more conscientious with our money. Not that we have ever been a "keep up with the Jone's family", but we have had the experience of staying in some nice hotels during all those continuing education courses over last 15 years years. Lulu ask me, "was this hotel rated with 1/2 a star?" I told her that these hotels don't use the star rating system, but instead the "Rusty Door" rating, and for her information this hotel had 4 rusty doors! On the 4 1/2 hour drive from Reno, we talked a lot. Was she nervous about this trip, and I asked why? She was concerned how the our kids would do with their aunt Ibis and the cousins for two days without us. How much was Baby Lourdes going to change when we are gone? What were we going to do with the kids on our next trip down, because my mom had just informed us that she was going to Hawaii for a couple of weeks with my step-father? I was very much enjoying these small moments together. I could tell that Lulu was struggling with this visit to the clinic, and I tried to look into her eyes and hold her hand as much as possible. We touch more often these days and we embrace each other frequently. I love the feel of her against me, I always have, but I just thought in the past that I could hug her whenever I felt like it; not when she needed it? I have found that I'm hugging people that I would have never hugged before. I had found something that I could have been doing all along, like smiling at people, that I had been missing for most of my life. I found myself checking the bed sheets for bed bugs as I climbed into bed for the unrestful night I knew was coming, and out of the corner of my eye I caught Lulu doing the same!

Doris' help with the diagnosis

Today I'm thankful for...

Going to the Aces baseball game with friends

Holding Lourdes for a hour, enjoying her touch Living in the United States this independence Day Having the freedom to make choices because of the valiant people who fight for these rights

Yesterday was our UCSF clinic day. It started with Lulu getting another Ultrasound and Mammogram done at 8:00 AM (we were all so excited to be there, we showed up at 7 AM). Then met with the breast surgeon (a fairly young women, that impressed the Lulu and her sister Doris). Again, the doctor preformed a very complete medical history, examination, and evaluation of the previous records and tests. She spent a long time explaining what her assessment of Lulu's condition was and what the next steps would be. She was very concerned about the fact that the mass in the right breast was so large, and that it was attached to the chest wall. The doctor had felt that chemotherapy before a full breast mastectomy was the better way to approach Lulu's cancer. She ascertained that by giving the chemotherapy first there was a good possibility that the tumor could shrink in size and the tumor's margins could get more defined (which I learned meant if that happened the surgery would have less chance of negatively effecting Lulu's long term use of her right arm). The doctor also thought it was important to get a MRI on both breasts, and needed Lulu to stop pumping to empty her breasts of excess milk.

Lulu would also start chemotherapy regiment the next week; have blood tests and chemotherapy every two weeks for a total of 8 cycles. Next, we met with the oncologist (another young female, again impressive). The oncologist went through the types of drugs used for this type of cancer and how they work. She also gave some details of the side effects of this treatment. I really liked her, and I could tell that both Lulu and her sister were impressed also. I do have to say that these two doctors were very compassionate; as could be seen by not just their words but also by their body language (they both did a lot of getting close to Lulu, putting their hand on her knee or shoulder, and looking directly in her eyes when speaking. Though, i mostly noticed that they didn't use words like, "you are going to be fine", or "we've seen patients with similar diagnosis and their doing fine". They would only say, "we'll give you the best drugs we have and do as much for you as we can". Wow, this scared the %@*&^% out of me. Wasn't this what the doctors tell you when there's no real hope of saving one's life, and they just want you to know they've done all they can? I told myself that they don't want to give false hope, or say thing that they may not be able to back up (especially the way law suits are these days, if they told me I would be fine and I died, my family could probably sue this doctor for wrongful death)?

We left that afternoon (about 4 PM, because we needed to get Lulu's sister to the airport for a 5:30 PM flight back to Puerto Rico) both with new optimism and also new fears. How was the final chapter going to read? In my book, my heroine was going to beat this villain called cancer and ride into the sunset her knight in shining armor (I was just hoping that the heroine was Lulu and the knight would be me?)

Meeting with the new OB

Today I'm grateful for...
A healthcare system that is the best in the world
Having a chosen profession that I love
Tia (aunt) Doris for being here in the early stages of diagnosis
Spending time with my wife

The last three days were spent working and discussing what's next for Lulu. Today we had an appointment with a new OB, due to the fact that Lulu had been referred to Dr. C by many friends through out the last 10 years, but she felt so comfortable with our regular OB, that she never thought about changing. Even though we were done with having babies (I hope), Lulu wanted to get her C-section incision re-evaluated by this new OB doctor. What a great office and equally great team we were seen by today. This is the way healthcare should always be, but isn't always the case. Lulu told the whole story from bed rest/monitoring at St. Mary's to the present diagnosis of the breast cancer. I know a "hard to believe story" even for a hardened OB like him. Of course he made same logical recommendations for Lulu, and we left felling good about Lulu's gynecologic future.

We all stopped by the hospital to see Lourdes (Lulu, her sister Doris, and I) before we were off to UCSF breast cancer clinic to have another opinion. Lourdes was having a up and down day. She was stable for an hour or so and then having difficulties with staying oxygenated. Lulu got to hold Lourdes for a hour or so before we needed to drive down to SF. We hated leaving Lourdes here, but knew that it was only for one day and that she would be taken good care of.

Lulu's sister had been very busy on the phone for the last two days. She had been calling physician friends, and family ascertaining where the best place was to treat breast cancer like Lulu's? Lulu and Doris' cousin is a oncologist at the University of Alabama and as it turns out has been working with some of the oncology physicians at UCSF. So, he made some calls and got Lulu an appointment to see the best breast cancer oncologist at UCSF for Friday. Not just that, he also worked out that Lulu was going to be seen by the Breast surgeon, have another biopsy, and an MRI all in the same day. We were all excited about this prospect of having all the tests and doctors working in synergy in one location.

So with hope, anticipation, trepidation we set off for the 4.5 hour trip to SF and the long medical day that we were to have tomorrow. We arrived here about 10:00 PM and were very tired. I wasn't going to have any problem sleeping tonight!