Stargazer

Trip to Hood Canal

When people say that cancer is cruel, they are vastly understating the situation. It's not just that it's terrifying and painful, it's also that the treatments plus the disease steal away who you are and what you've always been able to do. That said, there's been no hospital trip (YET) for us this weekend, but Mr. Stargazer is exhausted and weak without any energy or appetite. He asked me to drive him 1 1/2 hours to a job that a lovely elderly couple wanted him to do; I think it was partly because it's tough for him to drive long distances these days, yet it was mostly that he was going to tell them that he has cancer and isn't going to be able to do their job. Or any work at all, which is so sad that it makes me feel like weeping hysterically. I'm sure that he wanted me there for support and to make social chitchat, which is one of my biggest talents. ;)The drive was gorgeous and I took some pleasure in that. Nearly every time we rounded a corner, I would exclaim, "OMG, why can't I take a photo of this view!"

Photo via Seattle P-I.

This afternoon he tried to weed some planters (it's a beautiful day), but didn't have the stamina to finish or put in the flowers and tomatoes that he loves so much. What makes life worth living for him is slowly but inexorably being taken away. No wonder he's a Mr. Crankypants! Cancer, I HATE YOU! Staying positive is also getting much more difficult, although as always, I'm trying to find beauty and joy in the small delights of spring.

He picked them out and I put them into the soil; aren't they pretty colors? I have lots of books to read, almost too many. The sun is shining, for now, although the clouds and rain are coming soon. A metaphor? At least Mr. Stargazer enjoys the plethora of war movies on to honor Memorial Day, so it's a decent excuse to stay in his recliner for the day. *sigh*

A wee rant

What...wait, WHAT? http://www.thenewstribune.com/2012/05/24/2156953/tiger-on-the-prowl-near-puyallup.html Isn't life crazy enough? It's included the following irritations:

• Mr. Crankypants had chemo today and that means that tomorrow I'll be on edge over a potential Friday night trip to the ER. He coughs a lot after this drug too; when I asked him whether he could get benadryl in his pre-meds like they did before with chemo coughing issues, he bit my head off! My reaction was to go for a run and then come back and sulk a bit. Even a guy with cancer isn't allowed to act that way. I don't expect gratitude for every fricking thing I'm doing, but I'm also a person under extreme stress and managing the best I can. Sometimes it's hard to love the people we love, you know?
• On top of that, I had just dealt with two of his cancer related bills: in one, the hospital sent us an immediate invoice(for this past weekend!) for a co-pay of $300, when we've already met our $900 maximum. So, I called the insurance company; that lady agreed with me! She called the hospital, who told her it wasn't REALLY a bill. To which I responded, "It said that we had to pay it within 7 days and had all the information for paying by credit card--that's BS that it's not a bill." Then the Portable Oxygen Concentrator bill (for NYC) came in the mail, but I thought they had taken down all my credit card info over the phone to charge me for it. Thus, I had to call that company to find out that, yes, it was another screw up. They sent out the bill on May 17th, yet billed my credit card on May 18th. It's exhausting to constantly watch out for these kind of scams issues!
• At school the teacher next door has bad luck with power cords for his laptop(they blow up), so he keeps borrowing mine. Unfortunately, he never brings it back until I have to rush over to his room when my laptop is running out of juice. Before that I was dragged into my other neighbor's room at the very end of 2nd period to try to get his laptop to run on the ICS cart which was his lesson for 3rd period. Really? He didn't figure out the technology before the very minute he needed it, then it became a huge emergency? 
• I'm looking forward to a restful weekend, unless it's going to be another horribly stressful one and then I don't know what I'm ready for. Bed perhaps? A nervous breakdown? Some reading? A tiger sighting? :)

Wazzup

Is it REALLY only Tuesday? My body feels like it's Thursday or Friday already. Today while proctoring the End of Course Math Exams(a fancy way to say standardized test), I felt like I could fall asleep every time I sat down. Here's a little bit of why:

• After a messy couple of days of tests and NO results, Mr. Stargazer made it very clear to nurses and the hospitalist doctor yesterday that he was coming home. Our last visit cost well over $100,000 and led to no diagnosis or treatment, so what really would be the point? Thus, I rushed off with the oxygen tank to pick him up where we waited...and waited...and waited for discharge paperwork. As much as I love him, I've started to call him Mr. Crankypants. And unfortunately, in spite of my efforts to explain his treatment, cancer and chemo effects to the hospitalist doctor, he still managed to torture him with repeats of unsuccessful procedures that have already been tried, while fussing about symptoms that are extremely typical of lung cancer like anemia and a high pulse. When Mr. Stargazer visited his oncologist today, expecting to face her wrath for getting himself out of the hospital against medical advice, she commended him instead! According to Dr. B., there are many great hospital doctors, but we just managed to be assigned the worst one; he didn't even call her to consult about my husband's treatment. Pompous, arrogant you-know-what! So, for local people, if you have the misfortune to end up in the ER at Good Samaritan and get him, take off as fast as you can for St. Joe's!
• Obviously with my husband home, life is both more wonderful and more stressful. He's really not much better, although the fever and chest pain are gone. He's just exhausted, thin as a rail, uninterested in eating...and still a bit of a Mr. Crankypants, although better than he was in the hospital. I guess there's just something about one's own bed and recliner!
• One of our students was hit by a car(driven by another student) as I was preparing to leave school today. It was very traumatic and I'm hoping that both of the kids are OK. On a selfish note, it was right outside the entrance where I normally leave, so traffic was backed up horribly, making me arrive home later than I wanted to to check on Mr. Stargazer. A noble colleague was out there in the rain, directing traffic around the accident scene. Really surreal.
• My mom didn't need to have her heart "electrically shocked" this morning, which removed one stress from my plate. She called to let me know that her heartbeat had been regular when she arrived for the procedure, so they decided not to do it! Yay...I think? 
• There must be lots of black cats in my neighborhood because they keep "crossing my path." I hate to admit to being superstitious, but I am creeped out by black cats, including my Younger Daughter's Demon Animal. See?
• 
  I've found in my journey so far that life issues bring out the best AND the worst in people. When I mentioned the moss on my roof at school, or how sore my arms were from weed eating, my lovely colleagues rushed to offer help. Everyone feels so helpless(including me), so any time that I talk, even casually, about any of this, I am  overwhelmed with support. On the other hand, my asswipe BIL made a point when I was talking to him on the phone from the hospital to diss our oncologist. We adore her, but the rest of my husband's family thinks we should change docs. She was also my MIL's oncologist; in spite of caring well for my husband's mom, her office neglected to send a card when she died. Thus, she is the Devil Incarnate, according to them. However, we like her and trust her, so they can eff off. ;) In my mind, it's way more important what you do when someone is alive, versus when they are dead. BIL should take note of that, since he seems to ignore people until they are in the hospital, get cancer or are dying. He's an idiot, what can I say?
• 
  Gorgeous and fragrant flowers from a friend yesterday made my day brighter. And yes, you do see a stargazer lily in there; she knows me well, perhaps better than most anyone. Our family's health (and emotional) roller coaster has opened my eyes to the complexity of people and made me realize how truly terrible cancer is. I would have gladly skipped this life lesson.

The Frequent Flyer

First of all, I'm certainly not at my best at making decisions at 3:30 a.m. after a sleepless night. Following his unfortunate pattern, Mr. Stargazer felt fine Thursday after chemo, great all day Friday...until late last night(or is it early this morning?),when he spiked a fever, started having coughing fits and had trouble inhaling, with terrible chest pain to go along with it. I must have asked him at least 100 10 times whether he felt like we should go to the emergency room, and neither one of us could decide. As the endearing man he can sometimes be, he was worried most about me missing my coffee date this morning with my friend Marie and not being able to drive my parents to my uncle's birthday party in Burien. To which I responded, as you might imagine, that he was top priority!! When he woke up feeling a bit better, I was relieved. But that only lasted until I got back from my coffee date with Marie(wonderful as always) and saw the condition he was in which was grim. I followed protocol by contacting the on-call oncologist(our doc as it turns out) who told me promptly, " MARGARET, TAKE HIM TO THE ER IMMEDIATELY, NO MATTER WHAT HE SAYS!" So, that's where we've spent most of our lovely Saturday. But I did manage to buy and plant these flowers to nurture my soul. I don't know if it's just me or not; I start out being so good wearing gardening gloves, then somehow end up with my bare hands in the dirt! More satisfying?

In other yard news, we took an excursion earlier this week to buy me a lightweight and battery operated weed eater. I will miss him being able to whack those weeds and all the colorful swearing he did when the big gas/oil powered one wouldn't start. (every single year!) However, it's not to be anymore. These little details are so poignant, aren't they? And now, I must rush back to the hospital; he called me, is feeling lousy and wants a little company. In spite of my exhaustion, I can't really say no, although bed is so very tempting.

Since you asked

I want to recapture the beauty and wonderful times of NYC. And to spend more time with this girl, who adores her dad. (so does the other one, but she wasn't there) I love looking at my pictures and thinking about all the special memories we made. However...

this more expresses the way my week has been going. Happily, the students were very glad to get me back; they had a few funny stories to tell, like the sub trying to blow up my microwave with her plastic cup, thus my fifth period class had to evacuate for 15 minutes. Strangely, she didn't write it in her notes to me. ;) My third year group presented me with a movingly inscribed card, flowers and chocolates on my return which was so thoughtful. Being me, I made them get right back to work afterward though. I'm like that, extremely task-oriented. It doesn't help that the weather has been gorgeous(yay!) so the students have been mentally "on vacation."(boo!) Yesterday was Mr. Stargazer's oncology appointment to talk about the results of his CT scan; the doc walked in saying, "The results were bad. Let's get this out in the open. I don't like this at all." Without going into all the awful details, the gemzar/carboplatin hasn't been effective at all and the cancer is spreading, although the lungs are staying stable. Not the liver or the lymph nodes though. :( The next step will be his third line of chemo, IF the insurance company approves it. Abraxane is even more hellaciously expensive than the taxotere/cisplatin first line or the gemzar/carboplatin second line and we'll have to hope/pray/cross our fingers/rub our "lucky" rabbits' foot that this treatment will work! Otherwise, since the cancer is moving fast, it won't be good. I can't tell you how I feel because I'm adhering to my one step at a time mantra. I'm embarrassed that I lost it at the department meeting this morning and sobbed on a colleague's shoulder(a close friend, but still) and  I'm also (trivially?) focused on getting colorful annuals in my flowerbeds ASAP. As I've said so many times before, I have to take pleasure in the small things and comfort from my friends/family or I'll end up a basket case. I may be headed that way already. Look at this evidence...

Ashley hates these capris because they're too big on me, especially when they're unbuttoned like they are here in our hotel room. She says they make my butt look dumpy, so I thought I would flash some gang signs, while wearing my saggy pants. People dealing with cancer have to keep some sense of humor, right?

But I digress...

I am exhausted. But also joyful about our trip to New York City. There were many times when I was on the verge of weeping, sometimes with happiness. The contrast between our visit a year and a half ago and now was stark. Then he was vibrant and strong, now he's on oxygen and struggling. This long weekend was the equivalent to him of climbing Mount Everest. As he trundled along with his POC, going slowly up the stairs from the subway or feigning interest in a bicycle or a water testing station so that he could rest a little, I fought back tears. When Ashley asked him what his favorite moments of the visit had been, he said, "Nothing really. Just being able to DO THINGS." It was obvious how hard he was fighting for that(and fearing that he couldn't) which makes me tear up sitting here. Hey, I already said that I'm tired! The flights were long and the airports awful. I don't want to go into great detail about the POC except that it created consternation(to put it mildly) among TSA employees. At JFK this morning he was swabbed for explosives, in spite of the detailed letter and prescription I had for the device. Today we ordered a wheelchair for SeaTac and someone "stole" it, so he ended up walking way farther than he should have. :( I'm trying not to focus on the Thursday evening foul up with the two Apria offices; I spent two hours on the phone to Fife, Washington and Brooklyn, trying to get him his oxygen. (another case of someone not doing his/her job) In the meantime, we sniped a bit at each other from stress; he whined about whether he would get a 20 foot cord for the oxygen concentrator, when I had just spent a lot of time and energy dealing with someone else's f**k up. After the oxygen arrived, thanks to Clive, the weekend improved greatly! So, since I'm wiped, can I just impress you with a list of what we did? A rickshaw tour of Central Park, a fantastic dinner at Ashley's with pistachio/pesto fettuccine, a lovely salad and homemade garlic bread (plus a fun game of Chickenfoot dominoes after), Times Square for a street fair, the fascinating Intrepid museum, Top of the Rock, a water taxi tour, Battery Park where we caught a wedding reception and most importantly, lots of hanging out and laughing. Now for some photo craziness...

Ashley says we always get the worst backgrounds for our photos, so I'm very aware that that woman's a** photobombed our picture! ;)

See, we really were on the subway, except for yesterday evening when we took a taxi. This was very important to him. The steps though, OMG.

Mr. Stargazer's "condition" forced us to find other ways to do things and it was in many ways a positive. In the past we would have just walked around in Central Park, but this time we had to be creative. I learned a lot and it wasn't just about Central Park!

I learned that I'm the only Beatles fan in the family...

I learned that I'm the only one who was interested in the snowball fight bridge from the movie Elf. Younger Daughter, who has called both her grandmother and me on Mother's Day (is she becoming more thoughtful?), is a big Elf fan. I take silly pictures, don't I?

I can't tell you how much I love this photo.

Or this one. It's hard to capture the magic of the moment--the 70 degree day and sunshine, the accomplishment of, as Mr. Stargazer would say, DOING THINGS.

Yet another photobombing by this gentleman who decided to be in my husband's photo with the Coast Guard helicopter. Mr. Stargazer was a Coastie, you know. He was really in his element explaining how jets land on aircraft carriers and how to tie up huge ships. After we looked at the cockpits of the jets and watched a video of planes landing on the carriers, Ashley and I were utterly terrified, in a fascinated sort of way. ;)

If I'd been visiting our older daughter by myself in NYC, we would have never gone to this museum. However, it was an enriching experience, full of history and her dad's stories of his time in the military. Is there a lesson in there for me somewhere?

You want craziness? This is us trying to imitate the Mamma Mia billboard. Ashley probably won. My head was too far back...

When I talk about the juxtaposition of joy and sadness on this trip, I couldn't capture it better than this photo of my husband at the Top of the Rock, gazing out into the city that he loves so much. Even looking at this shot briefly makes me cry. Did I mention that I'm exhausted?

 

Random thoughts

• Are we ready to head off to NYC? Yes and no. I've dealt with 100 details about the Portable Oxygen Concentrator we got today, then I unexpectedly needed to call the airline to tell them its brand! Could I find it anywhere on the item itself? No, but I know it was made in China and that it's approved for airline travel. Thus, I scrambled to find the rental paperwork which listed its actual name. When I suggested to my husband that we needed to give the POC a unique name, he just gave me "the look." Our daughters would recognize it easily. :)
• Older Daughter has already made us her famous and incredible cinnamon rolls AND garlic bread to mimic the fantastic stuff made here; I grew up on it since my grandparents lived over there and my husband has come to love it also. I hope his appetite will improve because he's still having trouble keeping his weight up. :( 
• Mom is feeling better! She even went to Target with Dad, which is a huge improvement in her energy level. If my mom can't shop, she is definitely not well. However, her doc apparently didn't read the hospital paperwork; she sent her in for another CT which had already been done in the hospital. Thankfully, the imaging place caught it and stopped the procedure, which wouldn't have been healthy for her to have again. GEEZE!! 
• Younger Daughter made my mom's day by calling her to thank her for a card and money she sent. I hadn't said a word to Alison about doing so, thus I'm feeling all warm and fuzzy about that. And she's been getting great test scores in her hard math classes this quarter which is such a relief. Advanced math makes my blood run cold...
• Our suitcase is like a pharmacy. We have such a multitude of medications that it makes me sad. However, we're GOING and that's the important part! I have a couple of good books to read on the plane and friends to help us get to and from the airport. I'm hoping that my sub has no trouble with the students on these beautiful spring days, but I'm not worrying much. I have cancer to stress about so I can't think about minor things.
• 
  Here is our (yet unnamed) "baby" POC. :) You can see that his priorities for the trip are SNACKS. I finally got up the courage to share with him something that my new friend M. brought up when we last had coffee. She lost her husband to Stage 4 cancer in November and wished that she had had videos of him talking. And I realized that I want that too, very badly. Was I tacky? I don't know.
• I don't think I'll blog from NYC. I'll miss you all; however, I'm hoping to spend every moment making the best of a not-so -great but still promising situation. If that means just playing games together in the hotel room and eating cinnamon rolls, so be it. Au revoir. xoxo

Renaissance of wonder

I read this phrase in a quote and it just seemed to fit today, our first over 75 degree sunny day of the spring! (in spite of it being Monday, blue skies really help the mood) For so many people, things have to be perfect or great to be wonderful, but for me, it's all about the small joys. I guess that's what happens when you're facing hard times; you grab onto the moments that are special and never want to let go! For example, this little clip made me very happy, thus I've already watched it about ten times. Then, there's the beauty of blooming flowers...

as well as the potential for loveliness in our gorgeous orange lily(will bloom in June) and the Stargazer in the back, which is a late bloomer. (late July/early August) They are definitely something to look forward to!

This warm day included too many skimpy whorish outfits at school(ouch, rip out my eyes!) and Washingtonian kids who tend to act crazy at the sight of the sun. :) One of the highlights of my day was a call from and chat with Younger Daughter; it was an amazing conversation, especially since it didn't involve her needing money, having problems with the boyfriend or wrecking the car! She essentially told me that although I'm a strong woman, she's also an adult and wants to be there for me when I need her, to talk about uncomfortable, painful things. Because she loves me and supports me. *sniff* That may have been the best early Mother's Day gift ever.

Hello, Friday

I thought I would be fine. When my husband and I arranged to meet at the Social Security Office to talk to them about his disability benefits after school today, I felt strong and ready. Then I went in there and became embarrassingly weepy and ready to collapse with grief. One thing you need to know about me is that I would unselfconsciously cry in front of ANY of you, even cyber friends. However, I abhor losing it in front of strangers. They don't know me, you see. They haven't traveled my journey or heard/read about our struggles. It was just SO SURREAL. And he didn't qualify(yet) anyway because in spite of his Stage 4 lung cancer, he's hired a bunch of worthless people to finish his job at the Tacoma Rescue Mission, under his supervision. They are basically money-sucking parasites (including his BIL and a helper from his jerky brother) thus, he'll be lucky not to pay out more than he actually bid on this job, but that's beside the point. The SS admin doesn't care about that; they just look at the fact that he's on the job site, period. (with his oxygen tanks, might I add) When I told him in front of the SS employee that he needed to walk away from the Rescue mission stair job, he replied that there was no way he could let those people down, that's not him at all. I cried that our life has changed so much, that someone who loves his work can no longer do it, and that everything has to be so HARD. By the way, the people were very nice and we will re-apply when this nightmare job is finished, allowing him to "retire." :( By the way, the pizza today was excellent, the weather is improving (although it was 48 and hailing today) and Older Daughter is busy finishing papers, as well as snagging an internship in Seattle for the summer, unpaid but still exciting. My mom's fever has been down, plus I have a coffee date tomorrow, then bowling Sunday. In spite of its stresses, life still has ups; I'm just so exhausted from the downs.

Fast forward

Have I told you lately how much I love you? Because I SO appreciate the caring words, coffee dates,offers of support(even blood!), prayers, positive thoughts and even the warm hugs from my real life friends who read the blog. Most of you don't know what to say and I'm sure that my raw emotion makes several(all?) of you uncomfortable. Yet you still hang in there with me, cyber holding my hand and giving me internet love. xoxo On a related note, if you ever wonder why people are stressed about medical insurance or think it's so important to qualify for care, here was our latest hospital bill for one week and a day, not including the doctors--$100,000. Every week he gets chemo, it's about $4500. Every two weeks the Neulasta shot(one injection) costs $5000. And no one knows if or when they'll get a Major Medical Condition, like cancer. It can happen to anyone anytime, as we found out a year and a half ago! In the interests of something new driving me crazy, let's talk about school. That means ANNOYING DEPARTMENT MEMBERS who don't follow school rules, curriculum, or have any methodology about how to teach. They give the rest of us a bad name!! (is that why so many students signed up for French 1 next year?) It's certainly not because I'm the easiest teacher in my department nor am I the youngest(lol) or cutest. Then there's the admin, who assigned my arch-nemesis to "teach"(he doesn't know how) three sections of Spanish 1 next year WITHOUT even consulting me or asking how he was doing with the sections he already has. (abysmally) What am I, a piece of dog sh*t on their shoes? This is the same group who had no tardy policy, remember? We were supposed to tell the students not to arrive after the bell because it was disrespectful, blah, blah, blah. That was the so-called consequence? And they expected it to work! *rolls on floor laughing while saying some very bad words* However, tomorrow and Friday are half days for our Senior Project boards which means... TWO great (and free) lunches, Italian food one day and pizza the next. I can hardly wait for lunch! Too bad that my head judge for the afternoon boards is someone I can't stand; as I'm always telling the students, one must just suck it up and be positive. But, blech. Today after school I did something I never imagined; I applied on-line for Compassionate Allowances, a type of social security disability for my husband. He's always been a man who lived to work, so this makes me sad and also scared. He's definitely a realist, but I'm not ready for him to give up on life yet. :(