I can't believe that I am not asleep. I leave tomorrow for Southern California and need the rest I'm sure. For some reason, my body just won't relax right now. I'm thinking that it might have something to do with the fact that I've basically been in bed for the past 4 days. Maybe I'm all rested out at this moment. This chemo round has been a doozy. Much worst than the first and up until this evening I felt like there was no end in sight. Nausea is absolutely a terrible thing. I never really knew what people were going through, but now my sympathy, say, for pregnant women, has gone up 100%. To think that a woman can go through those feelings for 3 months or more is incredible and excrutiating to imagine. I can truly barely make it four days.
My friend Mike suggested that I ask for a different anti-nausea med today, which I did, and which finally yielded some relief for me. To say that I've felt like I was run over by a truck is an understatement. Its indescribable really. But, this evening I finally started feeling somewhat normal again. I do think I still have a ways to go, but I think I'm out of the hole that I've been in. Thank goodness. I'm so relieved that I am no longer dreading the flight tomorrow.
I'll be in So. Cal for Romy's wedding and to see girlfriends and Erik for a few days. On the 1st I'll head to Boise and spend the week with my mom in Weiser. Dillon and Cerra will come up from Utah, as will Alethea, Eric and their kids. Jim and Nikki will come up from Boise too. I'm so looking forward to seeing everyone and relaxing in the sunshine, which we've had very little of in Nome this summer. On my way home I'll stop in Anchorage for my third chemo treatment.
Hope this finds you well and that you had a much sleepier night than I.
Oh, one last thing. . . I don't have a scrap of hair left on my head and I have to say, a bald head feels kinda cool. Its amazingly soft and although it is still pretty shocking to look at myself, it is nice that at this time I don't have to mess with my hair.
I was scheduled for my second chemo dose in Nome on Wednesday. I went in about 10am and felt pretty ready and not too anxious. My nurse is a woman who has become a friend over the past few years. She is extremely positive and kind and I felt very comfortable with her. Unfortunately, she had some difficulty accessing my mediport. The cream used to numb the area was not on long enough so it was painful for me as well. We thought the needle was in the first time, but I could feel a burning sensation that wasn't right, so she tried again after a while. Before doing so though, she was able to get a blood sample to send to the lab. When she accessed the port again, she was in, but not as far as it needed to be. The pump kept beeping and the pre-medicine didn't seem to be flowing like it needed to. By the time the lab results came back I was nearly done with the pre-medicine drip. Unfortunately, the lab results were not in my favor. My white blood cells were too low for the chemo drugs to be administered. The process to this point had already been over 2 hours and then I was simply sent home. I was pretty loopy and tired from the pre-meds so my friend Millie drove me home. I went to bed and slept for over 5 hours.
When I woke up I was feeling pretty low. I was nervous about my upcoming trip to see my family and attend my friend's wedding. I jumped to the conclusion that my white count couldn't possibly go up in time for me to get the chemo with enough time to recoop and be ready for my trip next week. I felt very discouraged and definitely catastrophized the situation more than it needed to be. I guess because I've been feeling so good lately, I just wasn't prepared for something to not go just so. I had a good lesson in just how well I am, or rather am not, taking my life moment by moment. I've been prepared to not expect anything with each of these chemo cycles. My doctor told me from the beginning that each one has the chance to be very different from the last. I realize that I will have good and bad days and have prophesed that I am handling things as they come. Well, yesterday I didn't do so well. But, I did catch myself eventually. After a few hours and some emotional release, I let it go. I found a way to get myself back into the mindset that I needed. I knew that working myself up and thinking the worst wasn't going to help anything, so I stopped. . .
Visualization and meditation has been an important part of this process through cancer for me. I have read and heard from many others that success is greater for patients that use their mind to work right alongside with the chemo medicine. The visualization that many use has to do with picturing something eating up those cancer cells. Like a little pac-men going through your body and gobbling up all those nasty cells. My mom has helped me with other ideas too. Ultimately, what my method for fighting has been is lots of little fairies, almost like tinker bells. I didn't do very well picturing something fighting in my body. It seems that there is enough fighting happening in there already. So, for me, I needed something gentler and more peaceful. I imagine these fairies swirling through my body and vanishing the cells with their wands and fairy dust. I picture the cells disintegrating as that beautiful sparkly dust falls down on them. I also picture the fairies surrounding my ovaries, my heart, my lungs, my good cells, my other breast with a protective sheathing as to not be harmed the powerful chemo medicine. It may sound a bit over the top, but I think its helping me. It brings me peace and I can really imagine the process happening in my body. So, Wednesday evening and yesterday, I spent some time with this visualization. I imagined my white count rising up with the help of plenty of magic fairy dust. And it did.
When I went in for chemo late in the afternoon yesterday my blood work came back perfect and I was ready for the medicine. The nurse left the numbing cream on longer so I didn't have pain whe she accessed the port either. And, she used a longer needle which fit my port much better. Things went as smooth as they could have gone and 5 hours later I was leaving the hospital. That evening I was tired, but didn't feel too bad. Today, has been a little rough. I've had some nausea and have slept a lot. I am taking my medicine, but it doesn't seem to be a cure all. I'm just going to take it easy and try to restfully get through these next few days. I'm very hopeful that I will be back to feeling great very soon.
Last week I was leaving the grocery store and a woman that I recognize, but do not know, ran up to me as I was getting in my car. She introduced herself and said that she just wanted to tell me how much she appreciated the blog postings that I have written. She said that she really admired me sharing so much during this difficult time in my life and that she thinks I'm a very strong person. She also said that she just wanted me to know that I am in her thoughts. I was deeply touched by both her willingness to approach me and by the genuine thoughts and feelings that she shared. I remember sitting in my car looking up at her a little bit shocked. I know that I told her thank you, but I wished I would have gotten out of the car and given her a hug. You know who you are and if you're reading this, I just want to say thank you again and tell you that I should have given you a hug. I think it just took me a moment to let what you said sink in. I admire the fact that you were open enough to put yourself out there to me. You brightened my day and really surprised me.
I share this story because it was then that it occurred to me that I have no idea who is actually reading this blog. I started this for my close friends, family, and myself really. But, after meeting this woman at the grocery store I realized that there were more people reading than I knew about. So, if you're reading, I would love to know who you are. Whether I know you or not, if you would, please leave me a comment and say hello. It would be nice to know who I'm sharing all of these stories with. Thank you.
On Sunday, I took a photo of Buford and I with our matching heads, which I posted earlier. I just thought I had better get a picture before my hair was gone. It was a good thing because later that same night, I took a shower and looked down to find myself covered in hair. It was falling right out with a little help from the water. Although I think I've done everything I can to prepare myself for this, it wasn't any less shocking for me. Its a very wierd thing to get into the shower with a nearly normal head of hair and get out with a nearly bald head. I stood in the mirror for several minutes with tears in my eyes. But, then I took a deep breath and just walked away. I was swirling with emotion, not just about hair loss, but about everything that has and is happening for me. When your challenge is visible through a surgery scar or hair loss it provokes a different kind of emotional release I think.
For the most part, I am going through my daily life pretty normally. I have been feeling more like my old self lately. I'm working, having fun, feeling good, not so sad, and more accepting of the present moment that I'm in. Losing my hair is bringing up feelings of other losses I'm experiencing though. Its strange though because on one hand, its not that bad and I truly have the thought, thank goodness its just hair. But, it also feels like I'm losing a little part of myself. Although I want to handle it with grace, I am finding that feelings of shame, embarrassment, and sadness are right in front of my face. I believe that I will get through those feelings, but right now, I'm looking for the patience I need in order to do that. This is a very strange experience.
So, you saw the picture on Sunday night of Buford and I. . . well, here are photos later that night. .
And here are photos of day one in a scarf (yesterday) that I clearly don't know how to wrap on my head. I did my best, but spent the day feeling like others were looking at me wondering what statement I was trying to make by wearing a turbin. Most of my hair is gone now, just two days after it really started coming out. I'll spare you those pictures though. . .
To Council again this weekend. Buford's family does a big salmon fishing weekend to gather enough to eat through the winter. They get as many folks as they can to come out and help net and cut the salmon to make dry fish. This year it was Jeff, Andrew, Marcus and myself to join the family's fishing weekend. It was rainy and cool, but still another great weekend outside. Buford and I decided to take the canoe on the 6 mile trip down river while the others got picked up in the motor boat. Duke was supposed to wait with the others and ride in the boat down, but he didn't seem to want me out of his sight. He followed the canoe the entire way. He made it swimming and running along shore all the way to camp. But, when we got to camp he somehow ended up on the other side of the river. He cried with pleas for us to go and get him for almost an hour. After 6 miles of swimming and running he just couldn't cross the river at the very end. Eventually after calling him over, we ended up going across to pick him up. So funny. Henry of course rode in the canoe all bundled up in my sweater. It was a nice relaxing trip down the river, especially since Buford did most of the paddling. Unfortunately I wasn't feeling too great on fishing day so I didn't get to help out much. But, I did get to try my hand at using an Ulu to do the traditional cutting for dry fish. Moriah and Buford even said I did pretty good for my first time. In fact, Buford says he spent an entire year just cutting the heads off before he actually did the real cutting. It was a lot of fun to be a part of that process and learn how its done. Thanks to the Sallaffie/Holly family! On the way home we spotted a Beaver swimming up the river from way up high on the road. What a little cutie.
And, before its too late I thought I'd better get a picture of the matching shaved heads up. I'm losing more hair everyday and yes, I made the right choice to shave it. The little tiny hairs shedding away are a little easier to deal with. They sort of look like little eyelashes everywhere. I am noticing just how much hair I actually have though because for as much as I've lost, when I look in the mirror I can hardly tell any is gone. Hmm? Maybe it won't all come out after all. One friend thought maybe I halted the process a little by taking the weight off my roots. We'll see?
My second chemo dose is on Wednesday so keep those good thoughts for me okay. Hope you had a good weekend. . .
Thank You Nolan for being so you. For being born as my brother, for loving me, accepting me, lifting me up, treating me like the most important person in the world, bending over backwards to always do anything you can for me. Thank you for being one of my best friends,for being so fun and always up for anything. Thank you for always making me laugh and allowing me to talk, cry, get angry, or whatever else I need to do. You are so understanding, so loving, so spectacular and I love you more than you could ever know. The gift of having you here with me in Alaska was better than anything. I think Nolan would agree that the way in which he ended up here with me for a visit is quite incredible. Nolan's employer, Hospice for Utah, started a donation pool to gather enough money to buy him a plane ticket. A wonderful friend of mine, Alethea, is the administrator for the company and Nolan has worked there for over 5 years now. He is well appreciated and loved there for good reason. Besides being an outstanding person, the work he does is his calling. He has such compassion and such ability to connect with his patients. His co-workers recognize this and when his time of need arrived they were there to show their support. Alethea knows the special relationship that Nolan and I have and she just knew that both of us needed eachother at this time. I don't know how to really say thank you for this gift. So, I will just say this. . . Hospice for Utah, you are a group of very special, loyal, generous people and your gift to Nolan and I was so much more appreciated than you can imagine. We had an awsome time together and my spirit was truly renewed! Thank you, thank you, from the deepest place I know.
Nolan arrived late on July 1st. We obviously couldn't just go to sleep so we stayed up for several hours just talking and laughing and soaking up being near one another again after almost 2 years. The next morning we had breakfast at an old Alaskan restaurant and then headed out to the Matanuska Valley. I took Nolan to Eklutna Lake where we played in the water and enjoyed the warm sun. The temperature was perfect in the high 70's and the water and mountains were stunning. Later, we continued on to Wasilla where we stayed at a bed and breakfast that I've grown to love. I've taken both my mom and dad to this same place. We had a cute little cabin and we got a chance to just relax and visit. We had dinner out and watched a movie in. At midnight we even got a knock on our door to keep it down because the talking a giggling got a little loud for our neighbors. Oops. We had a lot of fun. The next day Nolan even let me play with his hair. I used a straight iron to give him a new look. And I thought I always wanted a sister. Ha. Nolan covers all the bases. What a sweetie and look how cute. We went on to see the Little Susitna river and take a short drive into Hatcher Pass to Summit Lake. It was green and lush and there was still patches of snow. The water was like a shiny mirror and the beauty of it all just seeped right into us. We were graced with spectacular weather again too. We drove back to Anchorage that day and chilled out at home for a while before going to a friend's place to BBQ. Nolan got to try fresh Alaskan King Crab and a Moose Burger, which I think he enjoyed. The next day, the 4th of July, Nolan and I took a drive in the other direction, along the coast, to Girdwood. The weather was a little cool and grey, but it was still beautiful. Had a good lunch and explored the little mountain town a bit. We headed back to Anchorage and hopped on the jet to Nome that evening. When we arrived back in Nome we definitely hit the ground running. We went out for a bonfire on the beach, then to Banner Creek about 2am, then up Anvil Mtn. at about 5am. We were with lots of friends and had a blast. We finally ended up in bed by about 6:30am. I don't even know how we really were able to stay up so long. There is just something about this midnight sun that almost creates a little mania I think. That and the fact that I was so excited to have him here in Nome with me and wanted to start showing him as much as I could. We slept until noon the next day and then were up and on our way outside again. I took Nolan to the mouth of the Nome river where it empties into the ocean and he caught a pink salmon on his first cast. We continued on to Grand Central and Salmon Lake just enjoying the sun, mountains, and icy cold water. Buford came with us too. I have known Buford only since Dec. '05, but he has become a wonderful friend. I've always told him that he reminds me so much of Nolan. He shares some of those great qualities that Nolan has like his kind and helpful nature, his uncommonly great manners, his generosity, his silly and fun personality. Seeing them around eachother just confirmed how similar they are. They really hit it off immediately and the three of us had an awsome time together. That night we went to dinner at my friend Kirsten's house. She treated us to more fresh crab and this time Nolan really got the feel for how great it is. The next day we went on a hike to Dorothy Falls. We hiked the ridge on the way there and the river bed on the way back. When we started out the day was a little cool and overcast, but by the time we got to the waterfall and started hanging out a bit the sun came out from behind the clouds and we were in the midst of another glorious day. We played in the FREEZING water and took turns going in under the pounding waterfall.
At one point we all held hands and went in together, not just under the waterfall, but through it to the backside We didn't last long and when we got out all of us were screaming with the pain of brain freeze.
But, it was still totally fun. We did a lot of laughing that day. When we got back into town we went out to dinner and then hopped on some borrowed 4-wheelers. The 3 of us took a 20 mile ride down the beach to Cripple River Gold Mine Camp. By this time it was 10pm, but the sun was still bright and we were all still full of energy. The ride was lots of fun and getting to the camp was even better. In the past, I had been as far as the camp, but had never gone up the hill from the beach to actually see it. I found out that day what I had been missing. It was so cool. It felt like a little ghost town full of old shacks, cute little wooden plank walkways and lots of character. The place was huge too. I had no idea how many people were out there, but my guess is that there were at least 100-120 people and 50-60 little cabins. There is a church, medical clinic, mess hall, saloon, a place to smoke fish, and all the room you want to pan for gold. Very cool little place that the 3 of us really enjoyed. Finally, Friday, we got a chance to sleep in and relax a little. Not for long though because we had to get ready for the weekend. We got packed up and drove inland to Council, which is about 2 hours away on a beautiful drive, which turned out to be more amazing then ever. That night we saw a moose, about 30 musk ox including some little babies, at least 30 rabbits, 2 fox, 2 snowy owl, and a beautiful brown bear. It was so awsome. Definitely a very Alaskan night. Once we got to Council we got a ride down the river by Buford's grandma, Dolly (Queen of the river). She is this sweet little Native woman who was raised, in part, in Council. Her camp is the oldest one there and she knows the river well. She took us 6 miles down river to Buford's family's camp where we spent the next two days. We relaxed, went fishing, chopped fire wood, went swimming. . . and just enjoyed the incredible scenery. Oh and got eaten alive by mosquitos too. Ugh. At the end you'll see a video clip of the three of us being very very silly one night when we made up a "Camp Council" song. We all used the same words, but my portion was a rap, Nolan's was folk, and Buford's was hard rock. We must have had 4 attempts before all three of us were able to flow it together. Very funny! We left Council on Sunday and took a leisurely drive back, even stopping at the Safety Roadhouse, an old time bar in the middle of nowhere. We had plans to get home and relax with an early night in for a change. Nolan was set to leave on the morning flight. . . or so I thought. At about 7:15pm when we got home I decided to check on his flight time the next day. To my surprise he was actually set to be on the evening flight, less than an hour away. He took about a one minute shower while I threw his clothes into his bag. Luckily we're in Nome where you can actually make it to the airport with such short notice. We even had time after we checked his bags, to grab a quick burger for him to take on the plane. Sadly, it was a quick and unexpected goodbye. We certainly ended on a high note though, after a spectacular 9 days together. He made it home early Monday morning.
When Nolan arrived that first night I was still feeling a little woozy after chemo. I was tired and had just finished 4 days of not feeling myself. I worried that I wasn't going to feel well enough to do much of anything. I'm not sure all the reasons my body took a turn, but it sure did. That very next morning after he arrived, I woke up feeling like a million bucks and I've felt pretty fantastic ever since. I'm so grateful! I absolutely believe that Nolan being here was the emotional boost that I needed and definitely played a role in how well I have been feeling.
So, again, Hospice for Utah and especially Alethea, thank you so much for your gift. Nolan and I had an amazing time together that was needed by both of us. We appreciate your love and generosity so so so much!!!!
Thanks to Buford we got lots and lots of pictures. This post took me so long because I couldn't seem to narrow the photos down. I started it on Thursday and have been coming back to it for a little bit here and there. Finally, today, Sunday, I'm finishing it up. I just wanted you to see everything. Its a good thing I couldn't get the photos off of Nolan's camera or this post would be even longer. Anyway, I hope you enjoyed seeing a bit of our time together.
We are such dorks. . .hope it makes you laugh as much as it did us :)
After 2 days and several handfuls of hair I decided it was time to let it go. I decided to shave my head last night and ease into my hair loss with a little more control in the one way that I could still have it. I think it will be easier to lose little bits of my shaved head rather than these long strands that fill up my hand every time I run my fingers through it. And, to my happy surprise my head is a pretty decent shape without too many bumpy areas. Bonus. My friend Buford had the clippers so he helped me out in the process. Before shaving it I thought I'd give myself a hair cut just to see what it would look like. I didn't think I did too terribly bad considering I was just chopping away at it with kitchen shears. When we were done with my hair we sat outside in the sun on my deck. Buford got up and said he'd be right back. Very shortly he returned with a matching shaved head. Pretty sweet don't you think? I'll get a photo of he and I so you can see. More about Nolan's trip will be up soon too. And, I've added a couple photos to the "Chemo news" if you want to see. Happy Wednesday!
No time to write. Nolan is here and there is too much fun to be had. Nolan arrived to Anchorage on the eve of July 1st. We had a few days together there to spend with Mike and check out some of the gorgeous scenery. He and I headed to Nome together on the 4th of July and have been playing outside nonstop since. Bonfires on the beach, hiking, swimming, ATV riding, exploring, gold panning. . . Its been perfect weather and we are having a fantastic time together. Its always so great to have visitors and get a chance to see Nome again for the first time. Nolan is the perfect guy to have around right now too. Its been nearly 2 years since we've spent time together and I need his sweet energy now more than ever. Having him near has done wonders for my emotional well being. Seriously. I'll write more about all our fun adventures together after he leaves. For now, I just want to let you all know that I'm feeling incredible inside and out. No sign of any sick girl here, just a very happy, grateful one. Heading out today for 2 nights of camping on the river in Council. I sure hope that you are enjoying your week and getting outside a lot. . . Be Well! This photo was taken during our last vacation together in NYC in '04
