My Check Up

I got up with an alarm clock! Normally, it is the Lemon clock that wakes me up. Alas, I had to get up on time today. I took Lemon to preschool early, and then took Paco to soccer camp. I hit the road to be Sacramento bound.

I had my monthly (really every 4 weeks) appointment with my oncologist today. This sounds crazy, but it started well because in the waiting room were 4 different lively women, all seemed at least 20 years older than I am. It was inspirational. I did not ask any of them what kind they had, but it did not really matter.

The medical assistant always seems to crack me up. I swear the oncologist is there to be logical about my head, the medical assistant to pull me out of a bad phase. We always giggle together in about 2 to 3 minutes. I told her about the milk in my breasts and she just shook her head. made sarcastic comments (funny and appropriate ones) and helped me along. When Dr. Adams came in, he spoke of the message I had sent last night. I had listed what was driving me crazy. I am getting a lot of hot flashes and they are, indeed, freaking me out. To me, it is just an add on to a juggling world. Seriously, do I need a reminder that I cannot (ok should not) have any more children? Bea had them before and she is strong in her soul. She never really had complained about them. That said, I have had one period (3 weeks long) in 3 years. The biology of having a baby has helped with that one. (yes, 2.5 years ago, but still…) For me the hot flashes are never not freaking me out. And then it became clear they are emotionally related. It is as if the gods have set a stress level. The flashes appear in a fashion to say, “cut that out. Don’t worry about this.” I was at a park with Shannon and I had two. Ugh.

So Dr. Adams suggested I go back onto birth control (which the NP had pulled off of me after surgery) to help eliminate the flashes. I am sure there is a psycho effect, but this evening, I am simply calmer. Having him be so forward is always rejuvenating. He seems to always nod his head and I hear (He does not say this) “here is the crap, here is how well you are dealing…” I spend 15 minutes there and feel stronger, feel unique, feel as though I am surviving.

I am sure some wonder why I will not leave Kaiser. This is one of the reasons why. It costs us, a fortune, as Steve’s job does not cover it. But when I think about the mental and safety affect, to me, that makes for an easier battle. It has been 14.5 hours and that medical assistant is still making me smile. In some aspects, that is just priceless.

I Must Sleep

I find I am getting older more rapidly than I would have guesed. I have friends who are in their 50s and their kids are the same age. They both work full time as well. I was speaking with a friend today wondering how it is done so well by people.

I had a good day, all in all. I am tired. But that would be true at this stage no matter what the surgery would have been. Yesterday, I had a great walk with a new friend and it did help. Today, I got on the Nordic Trak for five minutes. Yes, just five minutes. I must look at it as better late than never.

Alas, I need to sleep. I was not productive today. I kept falling asleep. So at this point, maybe I can beat my body to its needs. Steve is out with Paco at baseball practice. It is a good night. From what I understood, the boys (some times there is a girl) hang out playing, and the men stand around and chat. (The practice ended almost an hour ago. It is a mile away).

But my eyes will not stay open. So for now…I must go to sleep.

Watch Out For The Happy Zone

I am in a happy zone today. So I am going to post my inspirations all day. So tune out if you think I am getting crazy or seem insipid. I like to document the good as well as the bad. That is the glorious life of cancer. I admire, more and more, those who have gone before me and juggle so much.

First thing, it is cool and slightly rainy here. I love it. LOVE IT. I love central valley weather. And when it green and seems like the Pacific Northwest, I think, ahh, I have an awesome cousin in Portland and one in Seattle. And I think of all the fantastic places I can go and have a cousin to hold my hand. I lived in Vancouver BC for an academic year, that year, there were record snow falls.

And The Kids Went to Sleep.

I knew I had thoughts earlier. I had a watershed moment today. OK, a couple of watershed moments…

I find that I am chicken to ask for help unless I am desperate. My mother asked if she could come. I have not asked her. I have no idea why not. I wanted her here. But it seemed silly. I can do the basics. Alas, the laundry is piled up in a pack n play and unfolded. Paco has no underwear in his drawer. It is clean, yes, but in the pack n play. I am so glad she is coming tomorrow. I want my mom close by.

I also realized something in my soul. (This part is sappy, please forgive me.) I was taking the trash out tonight (Steve was working late). In the ten minutes, while I loaded up the recycling stuff and put out the trash, I saw about 8 people walking dogs or out for an evening walk. I was so envious. The boys were already asleep. Then I dreamed (as I pulled out the trash can) that in five years, we could leave the boys sleeping alone in the house and walk around the block in the summer evenings and be alone for a few precious moments. I realized I wanted to hold my husband’s hand in five years.

I have not had a huge fear of death. I believe (as I have said before) in a heavenly world, of sorts. I had been so practical of the idea of death. Letting go of Steve and he at younger age to build a different life.

I was following DABDA (http://dying.about.com/od/glossary/g/DABDA.htm), wasn’t I? I must have been in the bargaining phase. I would imagine passing away earlier. Seeing my dad, letting Steve move on to a new life, hopefully a new partner (while he was still young). I was being too practical about him starting a new life. Today, today, is the first day I got territorial. Today is the first day I realized that while I don’t have a true fear of the heavens; I love that man to whom I am with. I love being the mother of the two boys (a piece of me and a piece of Steve). And I want to walk around the block with him in five years. I want to nag about grammar. I hugely want to take the boys to Ireland and Argentina every other year. I want to show them what they have. My mother showed me my cousins in Ireland and England. Paco talks of his 4th cousins all the time. I look forward to the day I get to introduce Lemon his cousins in Cork Co. Suddenly, what I get to do in the future…makes me meaner (in a positive way).

I am sure I will be complaining. But today, I kept wondering why I was so happy. I love my husband. My older kid looked out for me all day. A pharmacist friend let me know I was not overdoing anything. And Lemon loves his preschool. Paco loves his science camp. Our house is messy, but really, who cares. My mom is coming tomorrow (I miss her). And today, I got to tell the story of our wedding to someone. (Sorry, ego-excused, it was a very fun wedding.)

Again, I am not suicidal. But for the last 23 months I have admired my cousin so much. He was in so much pain for so long and seemed to have hung in there with ALS for so long. Finally, I see it. He is giving me a Budweiser and telling me to enjoy what I have. Don’t get me wrong, there will be days of ickiness. But today, today, I truly enjoy what I have. Oooo I hear Paco waking up to come and snuggle. Tomorrow, I will be tired. And I will pick at my head. But tomorrow night, I get to hear Steve snore. And that snoring is mine.

Who Would Have Guessed? Grumpy to Happy.

I was so blue today. Yesterday and today were mentally the bluest I have been since before the surgery in July 2009. I have had awful days, but the cries were always relatest to hives, or diarrhea, or anything Tarceva related. But the last two days I had just been blue. It was strange. I think we are all awaiting the final results of the pathology report. For some reason, I am not anxious, just waiting. My mom was surprised I had not followed up more. I see the surgeon tomorrow, but I do not know for sure that the report is complete. I am always grateful that Kaiser Pathology sends samples to other NeuroOncology places (i.e. Mayo Clinic/Johns Hopkins). I am surprised I am not stressing more about that.

I was just blue. Just regular blueness from not exercising much and not having that much of a Lemon influence. I longed to go to Bariloche, Argentina and stay at the Llao Llao (Zhao Zhao) Hotel and eat their food for one week. Ahhhh.

I was like this until about 2:40 PM. I was so blue that I had pushed the Liz Army away. She knew I wanted to head to Costco (to get raspberries for Lemon, his favorite food). She understood my negative state with a lot of grace.

Costco was a good start, Judy and I giggled when we looked at the cart: red wine for the surgeon, vodka for me, fruit and vegetables (mostly for the boys) and socks. OK there were eggs and half ‘n half too, but the first few were simply funny.

We headed home and I rested. We had agreed that Judy would get Lemon at 3, and I would collect Paco at 2:35. I had offerred his teacher coffee for weeks. Today, I just insisted and brought him a double latte. He was grateful (and impressed). The first few minutes when the bell rang, one of the awesome moms asked if they could steal Paco for the afternoon. Paco gave me his backpack and took off with her and her sons. At that point, the teacher was watching a girl (a wonderful child) who had not been collected. It turns out the babysitter had forgotten. The teacher was giving the sitter a few minutes to arrive. I volunteered to watch the girl while the teacher headed to the teacher’s room to double check her pick-up list. I texted the mom, who called the dad and the dad was there in 5 minutes. And they were grateful.

The mom’s mom had made an incredible fritatta for us last week.

I headed home and got home right when Judy did with Lemon. And Lemon and I spoke and chatted and snacked. Then another dad called to see if he could hang out at out house; his car had broken down. For about 90 minutes I got to help. The dad dealt with towing the car and I got to watch two kids I know well, and whom Lemon adores.

The dad and the fun mom had provided us with dinner last night.

I am doing OK and I love to cook. But, I am also still quite tired. Everyone has done so much for our family…It was so nice to do something for someone else for a change.

That said, the highlight of the day was cooking with Paco. We have not done it much since Lemon has been mobile and verbal. But today, with Judy there, Paco and I were able to experiment. We tried 4 different ingredients/methods of cooking shrimp. It was just a joy. Both kids ate a ton before dinner and not much during. Yes, both had issues with going to sleep. But in general, they ate well and I should not complain.

So I started the day at the lowest, and ended with my evening in a wonderful spot.

The Contract

Uh mom, it was a Jewish marriage contract that was forgotten. Colleen handed it to Judy, so we (Colleen and I) mentally handed off responsibility!

Tom tells the story the best. Actually, the best storytelling is by Tom, Dean and Judy and Colleen, at a dinner table.

The Positive Power of Facebook and Twitter.

The Positive Power of Facebook and Twitter.

I stepped outside the box. I had pulled myself off of facebook over Christmas and slowly went back on, reading the friends that I know the best. Then I kind of left it alone. When I switched to TypePad, it was so easy to click, the facebook button (I have not figured out how to do it on WordPress yet). So for now, I am posting on both blogs. The facebook connection has reawakened me. When I linked yesterday’s long post to facebook, it increased the positive messages. This time around, I actually had become braver about restarting contact with old friends. These people (particularly JB and CO) I had the pleasure of knowing well in high school. The dudes in my class were good guys. I remember very few jerks from my graduating class. Meg, who posted on the WordPress blog, was/is a strong chick.

No sugar! No coffee. No Vodka.

Tomorrow I have a PET scan. I have not heard anything from Chen or Peak today I did hear from the technician about the PET Scan (no Carbs except fruit until tomorrow after scan). She was grumpy. I joked to Steve, I may have to take them donuts so they get that I have a sense of humor (since I have to show up 6 hours food free and again, no starches or sugar!).

I don’t remember crying today. I remember being annoyed that I cannot eat what I am craving, but I am fortunate that my morning was so productive. I took Paco to school and then wrestled Lemon into the car. We went to Kaiser’s Med Secretaries office to pick up my CD to take to UCSF next week (both the MR scans, not the PET, that can wait). While waiting I met a guy (JD) whose tumor is between levels 2-3 (so always round up). But the tumor itself is inoperable. That must just suck. He, as I do, loves Chen. We spoke of the straightforwardness and trust that the doctor holds. He is just finishing up radiation and is taking Temodar. We were speaking for 20 minutes and I thought I was waiting for my CD. It turns out the Receptionist saw that our conversation was deep and supportive and she did not want to ruin it. So she just was quiet until JD had to leave. I have her a huge hug and compliments for that level of awareness and tenderness. She is so thoughtful. Getting a CD is just…easy.

I decided to splurge on a chick-fil-a shake and mmmm. When we got home, I put Lemon down for a nap and decided to leave the chores for another day and I slept. 20 minutes later the PET person called. I was too lazy to write down all the limits. But I remembered them and mentally thought, “so glad I went to chick-fil-a”. Oh man, I love ice cream, the less the sugar, the higher the fat the more I like it.

I know I should be more nervous, more on edge, but getting treated well by so many really helped. I read or heard a lot of positive words. That is hugely helpful.

Instead of drinking tonight, I took benadryl. So I am off to the world where I am not chubby and the ice cream is just waiting to be eaten. mmmmmmmmmm

I had 4 things on my to-do list. The important CD was collected. So the rest can wait.

Good News/Bad News/Good News

Denial has a good purpose. Denial is considered the first phase of grief. But sometimes, it is the best. It helps with functionality. It helps push depression away. It has its place.

Tuesday, I had an MRI come back…unclean. There is something that has emerged where the previous tumor had resided. It could be scar tissue or other damage from the Radiation therapy, or it could be the budding of a new tumor. I received the call just as Paco’s baseball game was starting. Steve was walking down the street (he is an umpire) and knew from my mannerisms (more than a block away) that it was The Call. He asked, without words, “thumbs up or thumbs down?” I gave him a thumb on its side. That is the bad news.

The good news is I sent a message, shortly after the MRI scan, to half of the primary doctors in my world. Actually, just to 2 (the primary neuro-oncologist and the radio-oncologist) to start off. The MRI was completed at 10:45AM, e-mails were sent from the car via my iPhone. By 4:45 the NeuroOncologist Scott Peak had called to deliver the news. He was pushing forward to have the Radio-Oncologist, Allen Chen, take a look. Chen emailed me by 6PM, saying he would like to chat with me on Wednesday. Shannon stepped up and took the kids away, and Steve sailed from work to meet me in Rancho Cordova. Chen had ensured a NeuroRadiologist had looked at it to confirm and they had discussed what to do next. The general consensus was a MR Spect (http://en.wikipedia.org/wiki/In_vivo_magnetic_resonance_spectroscopy) to try to determine the content that showed in the MRI. There is also a chance of surgery to figure out what is there. I also could have the choice of waiting a few weeks and take a new MRI to see if anything grew. There were these little tiny modules (Chen and La Radiólogo Mágica both mentioned them). I asked Chen if that was a sign that the tumor was returning under the construction of a traditional tumor with spiders and such. (I need to confirm this with Steve), but I believe he confirmed the possibility.

I was scheduled for the MRSpect right away and it was conducted today. I was warned by the MRI receptionist that it would be a 90-minute scan. It turns out that is a traditional MRI plus the MRSpect. But the technician said that it would be about 45 minutes. It was quieter than a regular MRI, the settings were different. It was simply easier.

Chen had also put in the order for a PET scan. This, I will have done on Saturday.

Now, don’t get me wrong, I am a mess. I am crying about 15 minutes per every four hours. I want to check into a Westin (I love the sheets) or a Ritz Carlton (never stayed in one) and watch all the sad tumor TV shows, sit around and drink vodka and cry. Steve is trying everything not to be a mess. He is setting aside everything to be with me. He is going to work late (and making sure I am ok) and leaving early, trying to juggle work issues from here. And poor Paco, he knows something is going on in my head. tried to explain that the first scan just was not complete enough, but he has had two breakdowns in as many days. There is no passing over anything with that kid.

Side Note: Anyone who knows Paco, going to Michigan over the summer, let me know. I was thinking of sending him to his grandparents to get a break of the cancer chaos. But he is not ready to fly alone.

I was in a gloomy place this morning. I walked with Lemon to Trader Joe’s. One of my usual buddies was there today. It turns out I had never told her about the tumor. I spoke with her and another cool person in the freezer section. They turned my humor around in a matter of minutes. As I was checking out, another clerk came up to me with a bouquet of flowers. Just like that.

Over the last year, I have used my 20$ budget on Starbucks or Peet’s coffee cards. Simply for people whom I see do one polite thing. The economy and modern technology has effected us all so much. A lack of civility. Today, the bouquet of flowers just astounded me. I started to choke up as I pushed Lemon out of the store. And just like that, my crappy, negative mood was gone.

Between this experience, the huge volume of kissing Lemon’s belly and hearing the corresponding laugh and having an easy MRI, my attitude has turned.

There is no way in hell that tumor will come back with out being loved to death. That stupid tumor had given me friends, deepened my marriage and made my life true. The tumor gave me the gift of consults from multiple specialists within Kaiser. Then (thanks to Steve), I will run the whole thing by Dr. Clarke at UCSF.

So yes, people can complain about any medical program. But Steve understands why I won’t leave it. We have paid COBRA for three years. (Two different programs). I just cost the Kaiser over $11,000.00. This is not counting the PET scan (between $3,000.00-6,0000.00). In three days. No questions. No denials.

Chen had a good list of future treatments. I asked him to be frank about the future, if what we saw were a fast-growing tumor, I wanted to know what that meant. If it had been closer to the brain stem, three weeks. Mine is as far away from that as can be. He then listed again, all the drugs and treatments that are available. And I said, so I have a deep arsenal. And he nodded.

We won’t know much more until next week. But for today I feel like a fighter. Denial. Anger. Bargaining. Depression. Acceptance. I think I restarted the series. I am in the Anger phase. In this stage, it is the appropriate emotion to use to scare the heck out of the evil cells.

The Last 48 Hours.

My mom and beau-père came to the house yesterday for lunch. They wanted to take us out, but with Lemon, it is simply easier to eat at home. Judy made an incredible tortilla española and we ate it as fast as we could.

Lunch was wonderful. In a restaurant, we would have been overstaying after 90 minutes. Lemon would have been yelling and Paco would have been bored. But instead, we put Lemon down for a nap and Paco took a break from the table (he came back for dessert). And while we missed Steve’s dad at the table, it was a great time. I think having grandparents that get along well is a true gift.

This morning, Paco seemed slightly sick and I wondered if I should make him stay home from school. He loves school. By 8 o’clock he seemed to have improved and I was confounded that he was not jumping to go to school. It turns out, he wanted to come with me to take Judy to the airport. I smiled and said, I almost pulled you out of school to come with us. He was overjoyed. So was Judy.

When we got to the airport (after 2 stops due to car sickness from Paco, ok to tell the truth, the first one was due to me wanting Starbucks), and Lemon clearly remembered taking Miguel to the airport and started to cry. “Acá, acá” [Here, here] he cried, pointing to the front seat of the car. He did not want her to leave. Paco stayed by her side while she waited for the wheelchair to push her to the gate. (She had foot surgery last fall and is still getting her stride back). As we left the airport, Lemon called “Aba! Aba! Aba!” and Paco said, “I wish I could have taken Abu to the airport too.”

Paco was getting carsick again and held it until we got to Pinole, about halfway to Davis. Then, as we pulled into a Target lot, he rushed out to throw up. And this sounds crazy, but he did elegantly. Nothing in his hair was present, not on his clothes.

We met Steve for lunch before heading home. Lemon napped and I did too. The entire house seemed low. We miss those Argentine Michiganders a great deal.

Crab!

I bought crab today. Really, Brandon bought me crab. I had been looking through cards and found Brandon’s birthday card. A Costco card fell out. I was late in discovering it. Tonight we had crab. It is an old family tradition. I grew up with my dad’s mom, (named “Bombi” by my sister) coming by Christmas Eve. Christmas Eve was the seafood night. We all loved seafood except my dad. So the next day would be his meal. But the night before…crab, paella, something…fishy.

Lemon and I swept into Steve’s  world for a lively lunch. It is so hard to find separate time with each child. I cannot imagine my mom, my aunts, with active careers and 3 plus kids. I felt guilty for having a cool Denny’s lunch with Steve and Lemon. And then Paco learned about the crab. He was overjoyed to try it. Lemon took a late nap, which made him cranky. I carried Lemon in a hand-me-down child carrying backpack. I carried him because he was full of “mama, mama, mama” and would not be put down. And I wanted to clean and crack the crab, with Paco. So while I bonded with Paco and showed what one could eat and what one should wash out, Lemon danced on my back. We listened to music in Spanish and danced around the kitchen until Steve reported he was close.

We sat down for the crab and Lemon’s tantrum returned. He wanted dada sitting next to him, but kicked the tray away and threw the bib. For 20 minutes, he sat there, strapped into his high chair and refusing the tray. But wanting food. Finally, when I asked him if he wanted peas, he nodded and reached to the ground for the tray. Turns out, he did not want crab. He actually made a Barbara face (imagine the look on one’s face when smelling a sewer line) at shell fish. Both paternal grandfathers took control of his desire that meal. Beef taquitos and peas worked just fine.

Steve and I were both in awe over Paco’s love of the crab adventure. Steve kept telling him to follow me and do what I do, that I get the most out. I said, I learned from my mom and my dad’s mom. I felt like an expert. I could eat crab. Then, for dessert, I ate a few strawberries. I could eat strawberries. Slowly, the Tarceva damage heals.

The boys were in the tub and Steve was giving the bath to Lemon. They worked together. Lemon rinses Paco’s hair after it gets soap. And I am simply…grateful. I am exhausted but the work, the work of small kids, putting up with meds, aches and pains. It is a small amount of work for the pay of what I get to see. Good and bad times, I am a mom. How all these women do so much more than I do, is…amazing.

Paco, though, tested my knowledge of Spanish. There are two people whom he takes as speakers of gospel: his teacher and Judy. Today, they were discussing that Lemon is so hard-headed, cabeza dura. He told me that it meant stubborn. He said that is exactly the translation. Ugh, he misunderstood the difference between what something means and a direct translation. I had to look up all the translations and explain what I had found. Judy thought that was hilarious. Yea, yea. She is the gospel, I am the researcher. I feel for the teacher he will have in the future to whom he will say, “my mom looked it up.”

Man, I am a dork in that department.

The next few days are a bit busier, so I will likely not post again until Friday. All is well, just have to plan for the kids birthdays and other things here and there.