Tuesday, February 23, 2010

And Life Isn't Fair

C died today. She had lung cancer. C was the mother of one of the girls in K's Brownie troop. I just told K and both of us have been crying together.

C went into the hospital right before Christmas, ended up in a nursing home for awhile and spent the last few days of her life at her brother's house, with Hospice and her family. I am really struggling to make any sense of why C had to pass so soon. I had not known her for very long, but she made an imprint on my life. And I cannot explain it to K in any kind of sufficient way. It is so not fair. It is not even in the same universe as fair.

Roller Coaster of Life

If I did not know any better, I would swear I have rapid cycling Bipolar Disorder. (I don't, I just have Major Depression, exacerbated by chronic pain).

Sunday, and today, someone in my life hurt my feelings pretty badly, in a really unfair way. I have been pretty upset and sad today as a result. Yes, I know, I am responsible for my own emotions. Yes I know, I let that person really get to me. Yes I know, I can choose not to let that person get to me, but the fact is, today, she did. And I hate that she is in my head.

A few minutes ago, I got off the phone with my mom. One of the things my parent do for my birthday is to buy me Twins tickets. My birthday is in April, and coincides closely with Opening Day. The past few years, they have bought me tickets to the Twins at Angels (since we are here).

Well, a new wrinkle has emerged. My mom has offered to fly the three of us to Minneapolis sometime this summer, to see a Twins game at the new stadium. WOOHOO. Happy Birthday To ME! And since this summer is an anniversary of sorts for M's football buddies, we can kill two birds with one stone, and hang out in the motherland to boot! Yay!

Still feel sad about the other thing, but the timing on my mom's call could not have been better. I have hope.

Thursday, February 18, 2010

Halfway through February

Well, we are over halfway through February. My back pain is getting worse. I really need to get back to the doctor.

Last weekend was good. We took the Brownie troop (along with a Cub Scout den) to the OC Zoo at Irvine Regional Park. Most of the animals at the OC Zoo are "rescue" animals, which is kind of neat. We saw bald eagles, turkey vultures, an opossum, an ocelot, a mountain lion and a lot of other animals. A's dad also taught the kids how to use a compass and a map.

After the tour of the zoo, we had a picnic lunch in the park, the girls climbed trees and the adults relaxed. It was a really nice time.

I went to the knitting group at church after the trip to the zoo. It was really fun to hang out and knit with everyone (and get to know people better). I am working on a scarf. I have torn it out and started over three times now. It is so nice to feel part of the fellowship at church. I have belonged to churches in the past and never really felt like I belonged. I struggle with that feeling of belonging in almost all areas of my life. It is really a lonely feeling sometimes.

Some friends of ours had tickets to the UCI men's basketball game on Saturday night, so we went along with them. K got to hang out with P and L; she had a really good time. UCI beat UC Davis in the final seconds of the game. It was really exciting!

Because I did so much on Saturday, I feel like I have been paying dearly for it ever since. This gets really old.

Tuesday, February 9, 2010

Whale Missing

Yesterday, our Girl Scout troop went whale watching. Well maybe not so much whale watching as hoping to see whales.

M took the day off so he could join us, as this was a family event for the Irvine Girl Scouts. We boarded the boat from Balboa Island in the Newport Harbor. The boat was one of the high speed catamarans they use to shuttle back and forth from mainland southern California to Catalina Island. We started our trip out on the top deck, where it was windy but the sun (and our jackets) kept us warm. As we were leaving the harbor, we came by a buoy that had about a half dozen small sea lions on it! They were adorable. Some of the girls saw some jelly fish in the mouth of the harbor as well.

I have never, before yesterday, gotten seasick. I had bought some chewable Dramamine for K in case she got sick. I ended up taking one tablet of Dramamine, and just stayed queasy for the rest of the trip. The queasiness got a lot worse when we went downstairs to the second deck of the boat. Not sure why that was, but I spent a good portion of that part of the trip with my head between my knees.

There were no whales to be seen on our trip, but we did happen by a pod of dolphins, and they swam right up close to our boat. They are such majestic and playful creatures. I have yet to upload the photos, but M said he got some good shots of the dolphins swimming by us.

Thankfully, our trip was scheduled within the two day window between rainstorms. This is an El NiƱo year, so we have been having more rain than normal. Fires, mudslides, earthquakes...who would not want to live here? Oh yeah, that is right, it is the great weather, the beaches, and the mountains that draw people here.

By the time we got back to the landing, I was chilled to the bone. I am still kind of cold this morning, which is unusual for me. What is it about being outside for long periods of time that makes one so tired? Because I am exhausted today as well. Oh well. It was a good day.

Sunday, February 7, 2010

Pleasant Surprises

This weekend has been filled with pleasant surprises. Yesterday, we took one of K's friends with us to the Home Depot Kids' Workshop. I love the Kids' Workshop, the projects are simple enough for the kids to get confident with using hand tools; and the projects, the apron, and the pins for finishing the projects are free. This month's project was a little shelf to store Hot Wheels type cars on it, apparently in honor of the upcoming Daytona 500. Both K and L really enjoyed building their shelves (but K owns no Hot Wheels cars, and I suspect L does not either). After we got done, we went to drop L back off at home, and were invited in for lunch. Very pleasant surprise. The girls played together while the three of us adult had a great conversation in the kitchen.

This morning at church is where the next pleasant surprise took place. We had invited our friends to join us at church a few weeks ago and they came today. They all seemed to enjoy the service (and the kids enjoyed Sunday School). It was a really busy day at church today. There were two baptisms, we welcomed four new members, and we also had communion. And we in the choir sung the challenging Haydn piece. This piece is particularly challenging for altos and basses, as both the alto and bass parts are often at higher pitches than the sopranos and tenors. That high E note? Nope, can't hit it, even when standing on my tiptoes. We got through the piece, but I think I would have liked a few more rehearsals of it to get more comfortable.

After church, K continued her sale of the Girl Scout cookies. We turn the pre-orders in tomorrow. There was also an all church potluck to welcome the new members. It was a nice relaxing early afternoon. After we got home, K wanted to watch the Puppy Bowl and the Kitty Halftime Show. Near fatal amounts of cuteness is the only way one can describe that show. It was fun watching it with her. Then we watched the Superbowl. Congratulations to the Saints and their fans. I wanted the Colts to win, mostly because I am heartbroken over the Vikings losing the NFC Championship again. But, oh well, obviously the Saints wanted it more than the Colts.

Tomorrow, we are going whale watching with the Girl Scout troop. I am excited, and so is K. I have to try and get some sleep tonight or I will be a hurting unit tomorrow. Goodnight.

Friday, February 5, 2010

Happy Cancer Anniversary to Me!

Today is the twenty third anniversary of one of three days that changed the course of my life forever.

Tears were streaming down his face when he said, "You have Hodgkins Disease." He did not say the c word, even when pressed. We asked what we were to do next and words like further testing, surgeries, and oncologist were uttered. I left Dr. Gozum's office in a fog. I called Dr. Salmi (my general practitioner) to try and get in later that afternoon to figure out what we were to do next. The receptionist told me there was nothing open. My mom took the phone from me, and rather bluntly told the receptionist to open something up because I had just been diagnosed with cancer and we needed to get some answers. Miraculously something just happened to be open at the end of the day.

Dr. Salmi DID say the c word. He also had recommendations for two different oncologists, both out of the same practice. One male, one female. He had a higher recommendation for the male, Dr. Sborov. So, because I had no issue with male doctors, I chose him. This turned out to be an excellent choice for a number of reasons that may be revealed in a later post.

It is really weird how I can remember the details of that day. Because I have always had kind of a muddy memory for stuff like this. The sun was shining that day when we went to both doctor's offices. Between appointments, we went to Applebee's for lunch (and for years, I could not set foot in an Applebee's because it was too emotionally painful, in retrospect we should have went to Bennigan's because they are all out of business now!) Sunny days in February are actually fairly infrequent in Minnesota. Sunny days in February that are not accompanied by subzero temperatures and windchills are exceedingly rare. It was sunny and warm (by Minnesota winter standards).

I remember going to visit some friends at the House of Too Many Rooms that evening and breaking the news to everyone and just crying in the living room of the house. I am grateful that I am still friends with a lot of the people that were there that evening. I am also exceedingly grateful that they were all there. I would have never made it through all that without their love and support. They loved me when my body was broken and dysfunctional. They loved me when my hair was falling out, and when my skin was burned so bad from the radiation that it had turned purple. They loved me when I was overcome by all the emotional shit one goes through when faced with catastrophic illness. They allowed me to just be where I was at, no judgment, just love. And they helped me fight. I have a special place in my heart, always, for one person in particular, who, by serendipity, was closest to me through this, and handled the intensity of it all with grace, sensitivity, and humor. My friends and family were strong when I could not be.

The next month was filled with doctor appointments, "minor" procedures (both the lymphangiogram and the bone marrow biopsy could be classified by the Geneva Convention as torture modalities), CT scans and ultimately the abdominal surgery, which removed my spleen, my appendix, and several lymph glands. The cancer had not advanced to my abdomen. I started my radiation therapy when I was still in the hospital recouperating from the abdominal surgery.

My life became daily trips to the hospital for my rads, daily fluoride treatments for my teeth because my saliva glands were knocked out by the radiation, and weird dietary considerations because most foods were too difficult to swallow. For months, I lived on mashed potatoes, gravy and Ensure "shakes". Note to anyone who may end up having to drink Ensure for their nutrition: avoid the strawberry flavor. I joined support groups, I took a leave of absence from work, I hung out with and clung to my friends, and I went to the doctor, a lot. I was thin even before the cancer, but because I was not able to eat a variety of foods, I lost weight and became rather anorexic looking. Real sexay....not! In those days, I looked like walking death. It was really frightening to look in the mirror.

I am still not really all that sure if the old adage, "what does not kill you makes you stronger" is true. I survived it, but still have a lot of lingering baggage from it, both physical and emotional. I am not sure one ever truly gets over cancer.

Wednesday, February 3, 2010

Weird Aniversaries (this gets a little graphic - avoid if you are squeamish)

It was 23 years ago today that I had the original biopsy. Today is very bittersweet. At the time, I already knew deep down inside that I had cancer, but had two more days to pretend I didn't. I still wonder what my life would have been like without the diagnosis and treatment of the Hodgkins Lymphoma. Would I have better lung function? Would my energy levels be more normal? Would I be more fearless in life? And more questions I will never have the answers for.

I am grateful that my surgeon had done some training in plastic surgery, so it lessened the visual impact of the big scars on my neck. This same surgeon later did my rhinoplasty after I had broken my nose in a construction mishap. Amazing doctor and an even better human being. When my mom and I (I was 22 years old and very single) met with him to get the awful diagnosis, he was crying right along with us. He said, "I was so sure it was benign when I was operating. It LOOKED benign." I am sure he is retired by now, but if he is not, I highly suggest Dr. Gozum in the Twin Cities area, if you ever need an otolaryngologist (ear, nose, and throat specialist).

I wish I had been writing in a journal back then, I think it would be interesting to read about where my head was at back in those difficult days. I do know there were moments that I thought of ending it all, but I talked to the right people and got the help I needed to get over it. To be honest, I could not bring myself to do it. I do remember people trying to make long range plans with me. I had to tell them that I was unable to make long range plans, and could they call me right before the activity and I would tell them whether I felt up to it. I am sure it was frustrating for my friends. I know it was frustrating for me.

I remember losing half of my hair (I had radiation therapy and lost all the hair in the radiation field). I lost the hair from just above the notch on the back of my skull and down from there. Thankfully I had long hair at the time so I was able to "cover it up" well. It was a weird sensation when a fan blew up under my hair, to the skin that was not used to being bare.

The nausea during the second phase of my radiation therapy was more than unpleasant. All of my life, I have had a phobia about vomiting, and here I was, vomiting all the time. I still have that phobia. I will move heaven and earth to avoid puking. As a result, I have not puked since the early 1990s.

I still have the low blood pressure that I got during those days. I have to be careful when I stand up, so I don't pass out from the blood pressure dip. Funny story about that - I was at a club with some friends during my treatment, and someone walked up to me and asked me about how long the doctors gave me to live. I stood up too fast (deliberately) and fainted. Freaked the nosy person out, then I told them that I had at least 50 or 60 years left. If I could not laugh about it all, I would have been crying all the time. I also played a prank on my boss. When I was losing my hair, one day, my boss walked by my cubicle and asked me how I was doing. I grabbed a chunk of my hair, pulled it out, and said, "this job is driving me crazy!" He turned whiter than a twice bleached bedsheet, and said, "please tell me that was going to come out of your head anyway!" We had a good laugh about that. I had to find things to laugh at, while going through all of the crap. It was the only way I could have survived.

Obviously, it was not all fun and games. One of my friends had a "skating party" around Lake Calhoun toward the end of the first phase of my radiation therapy. So we went and rented skates (or Rollerblades for those inclined) at Rolling Soles, and proceeded to skate around the lake. I got about halfway around the lake and I could not go any further. So I had to sit and wait until someone had gotten back to the skate rental place, and pick me up in the car and take me back. I was such a buzzkill. I felt awful that I felt so awful that I could not get around the stupid lake. It is only 3.2 miles around.

OK, enough trolling down memory lane for today. Perhaps in a later post we can go into the dietary weirdness that was my life in those days.

Monday, February 1, 2010

Monday Frustrations

A. (the leader of the Brownie Troop) and I met up today to go check out the Tucker Wildlife Sanctuary to see if this was a facility where we could have our Bridging Ceremony in June. I Googlemapped the location and got driving directions from the Girl Scout Council office (which is across the street from A's office), since the preserve is closer to A's office than my house.

Got to the Council office and we were on our merry way. Until we got onto Modjeska Canyon Grade. Ho Lee Crap is that road ever treacherous. I understand it is a paved narrow canyon road, but there were places that there was not any distance between the road and the dropoff into the canyon (we are talking less than 6 inches of "shoulder"). These are the kinds of roads that if I am not driving, which I was, I would be hiding under the seats of the car. Beautiful country, crazy scary roads!

We get to Tucker and there is a big sign that says they are closed on Mondays. A. had called last week and spoke to someone there and told the person working there that we would be there on Monday to check it out and the person failed to tell her that they are closed Mondays. So we were rather frustrated. We got out of the car anyway and took a look around. It has some nice mellow hiking trails, so our girls could go on a hike while we visit. The elevation is not extremely high, so we would not have to worry about hypoxia. I get breathless at about 3000 feet elevation, and the elevation of the preserve is at about 1500 feet. The interpretive center looked really neat with microscopes and all sorts of things to look at with regards to the flora and fauna of the area. There were all sorts of signs hung up warning people to watch out for poison oak. "Leaves of three - let it be". All in all, it looks like a really cool place to hold an event. We are not sure whether we will do the Bridging Ceremony there, but we will probably do a hike there.

On the way out, we tried to follow the opposite of the directions we had on the way in, but somehow I missed a turn. We ended up on a road that I was at least somewhat familiar with, so we did not get totally lost. When we were on our way in, there is a section of the road that is only about 1 1/2 lanes wide, and of course we met a UPS delivery van at that part of the road (at least it was in the flats, so we did not have to drive into a ditch to avoid the UPS guy). I would hate to have that area as part of my route if I were a delivery driver. I felt like my little HHR was way too big for the canyon road, I would hate to try and navigate it in a delivery van.