tag:blogger.com,1999:blog-71603430521441559292024-03-21T10:29:33.778-06:001974 to TodayMy life experiences. When we share our experiences, sometimes we find others who can relate. Then we don't feel so alone in the world.Unknownnoreply@blogger.comBlogger77125tag:blogger.com,1999:blog-7160343052144155929.post-19046746182024432112011-04-18T20:20:00.003-06:002011-04-18T22:12:28.791-06:00It's been a while.It's been months since my last post. I guess that's what happens when you're living your life. You get busy. Busy doing the things that you want to do, rather than what you have to do to stay alive. The word live is right inside alive, of course. I'm alive, so now I live. I live unlike I did before.<div><br /></div><div>So, here is the update and details of my recovery. Yep. I'm still recovering and still on medicines, even though we tried to get off of them altogether a few months ago.</div><div><br /></div><div><span class="Apple-style-span" style="font-family: Helvetica, Arial, Verdana, 'Trebuchet MS', sans-serif; font-size: 13px; color: rgb(75, 99, 32); ">Things I can't wait to get back to doing:<div>- breathing without a tube in my nose: SUCCESS - tube and O2 equipment is out of the house. Finally!</div><div>- sleeping in my bed next to my husband: SUCCESS - and success...</div><div>- cooking: SUCCESS - loving every meal I make!!</div><div>- pushing a grocery cart, not sitting in one: SUCCESS - getting the shopping done every week without a backwards glance at the electric cart!!</div><div>- exercising like I used to: WORKING ON IT. Just exercised officially for the first time today. It's what made me want to write.</div><div>- mini-triathlon: NOT YET. Maybe in a few years. Before I'm 40?</div><div>- riding a bike: NOT YET. I expect to take a short ride or two with my family this summer. Somewhere level and close to home.</div><div>- walking to class without feeling winded: UMMM. Never got to that point while I was still in school. (See later answers...)</div><div>- focusing on school: SUCCESS - Finished my BS in Political Science last May, then my BS in Mass Comm in December! Woohoo!</div><div>- seeing fewer doctors: NOT YET. This will be a while. I still see an Internist, Endocrinologist, Oncologist, and Radiation Oncologist.</div><div>- looking for jobs in Manhattan: LOOKED. Realized I need to be here close to my doctors. Also, I want to be able to afford to enjoy life working only one job. </div><div>- working on my CV and cover letters: SUCCESS - Easiest job application ever!! I sent in my worked over resume (thanks to my friend Kathleen) and ended up getting an awesome position in my fields! AWESOME!!</div><div>- working on my website - SUCCESS - Actually taught a few web design classes last fall at the University of Utah. I still "own" the website: http://teach.utah.edu.</div><div>- having dinner parties - SUCCESS - I had my first post-cancer/Cushings dinner party in late February. It was a lot of fun and we will definitely be having more this summer in the back yard! (Could not had done that without my husband's help - plus, he makes parties fun.)</div><div>- cleaning my house - AS SUCCESSFUL AS IT'S GOING TO GET... :) (looked into a house cleaning service recently, not because I can't, but because I really don't like to.)</div><div>- helping at my daughter's school - NOT YET: Just reminded my daughter. She asked "why do you want to help at my school?" I said, "because it's one of my goals, now quit asking silly questions!" </div><div>- going out with friends - SUCCESS - Not nearly often enough, but I have managed to get out for dinners, movies, coffee, etc. I'm not terribly close to my girlfriends. I never have had good luck with girlfriends. Most of my friends, from a very early age, were boys. I hope to do more with the girlfriends I do have, despite our lack of closeness.</div><div>- going on dates with my husband - NOT REALLY. It's all in the planning and that is something we just don't do.</div><div>- continuing to create new family traditions - SUCCESS: My favorite new tradition is related just to summer. Sleeping on our back patio, all three of us, on a weekend night after bbq'ing, watching a movie on the big flat screen we bring outside to put on the bar while we sit in camp chairs around our fire pit sipping a cool drink. </div><div>- Monday Night Dinners - SUCCESS - But not anymore. We're saving money and trying to eat healthier. Now we only eat what we want (whatever we want) on Sundays. It's healthier and we save money. It's a change in my goal, but I couldn't be happier with it!</div><div>- polar bear club - NEXT YEAR FOR SURE!!</div><div>- shopping for stylish clothing - SUPER SUCCESS!! Day at Nordstroms. The thing is, I need to go again; and it's actual NEED! Losing weight is the greatest excuse for shopping sprees!</div><div>- finding a style (should happen before the previous item) - SUCCESS: I have found that whatever fits and looks good is my style.</div><div>- dancing - SUCCESS: Yes. It's usually by myself in the kitchen with Katy Perry on my iPod.</div><div>- visiting friends (some have had babies in the last year and I haven't seen them at all!) - SUPER FAILURE. I've seen a few of my friends (lunch visits or randomly at Target during the holidays). I have not put forth the effort I should. My biggest problem when it comes to friends.</div><div>- traveling for vacation - SUCCESS: Still California, but visiting without being poked with a needle is a nice vacation.</div><div>- fishing - PLANNED: I was supposed to go fly fishing with my dad for my birthday last month but it was just too freezing cold and we were just worried about me physically handling that much.</div><div>- camping (I've never been, but would like to go some time) - SORT OF. The combination of the patio experience (previously explained) and another one of our Sunday experiences during the summer of going up the canyon for campfire dinners works for me!</div><div>- hiking - NOPE. I need to work on my endurance. Then I'll give it a try.</div><div>- snowshoeing!! (I have missed the last two winters and I love to snowshoe - fun and a great workout!) STILL MISSING IT! </div><div>- shopping with my tween daughter - SUCCESS: The mall is a very entertaining place to be with your preteen daughter.</div><div>- playing Wii with my daughter (I'm horrible mostly, but it's time spent with her) - SUCCESS! Post chemo/radiation recovery last summer I spent some time working the Wii on Super Mario Bros.</div><div>- showing my daughter what it means to be a woman - ONLY TIME WILL TELL. I work at this every day. I think some things sink in and other things get lost in translation (or eaten up in some dark black hole in space).</div><div>- gardening (flowers and plants - I've given up on vegetables/fruits because Craig loves it so much) - PLANNED: I'll be growing some pumpkins this summer! Hopefully planting out the front beds too!</div><div>- home maintenance and decorating - PLANNED: Dining room, bedrooms, patio, painting house (supervising of course), and painting something to go above the fireplace!</div><div>- bending over to lace up shoes - CHECK! Wore tennis shoes last Saturday for the first time in a few years.</div><div>- seeing my feet when standing - SUPER CHECK! I need another pedicure. It must be close to summer.</div><div>- sitting in those little desks at school without feeling like I'm being cut in half - WHO KNOWS? Never got to that point. My last class at the University of Utah was in an auditorium with nice padded seats. I fit in those pretty well!</div><div>- eating an apple without slicing it up first, same thing with a carrot - SUCCESS! My braces came off February 16, 2010.</div><div>- flossing my teeth in 2 or 3 minutes, rather than 20 or 30 (threading between braces takes a long, long time!) - SUCCESS! </div><div>- wearing necklaces - SUCCESS!</div><div>- swimming - SUCCESS! Tonight was the first true use of swimming as an exercise. In the last month or so, we've gone swimming as a family and jumped off the diving board too. I raced my 12 year old daughter down and back and won! Of course, when I got back, Craig was there to keep me from drowning while I caught my breath. I totally kicked her butt!</div><div>- running - NOPE. I think this will happen in time, but it will be a while.</div><div>- finding my abs and butt - BUTT FOUND. Abs are still hiding.</div><div>- taking a family picture - SUCCESS. Not necessarily happy about it though. My husband's family took a big family picture last summer. I was still bald and wore a pretty scarf and a big smile.</div><div>- evening walks after dinner - SUCCESS. Well, we did it last summer and just started this year.</div><div>- caring for friends, family and neighbors who may need me - TOTAL FAILURE. I have to say that I knew it would happen, I just didn't think I would be one of those people who would be doing it. My friend was in the hospital after a bad skiing accident. I was there with my friend, his wife, while he was in surgery. I went to visit once afterward while he was still there. I told him to not be surprised when the visits from people started to deteriorate. It was natural. It happened to me, but I was determined not to be one of those that faded. Months went by before I saw him again. Crappy friend I am.</div><div>- planning graduation parties! SUCCESS! My family threw me a graduation party last May in California. My husband is taking me to see U2 in Salt Lake City next month for graduation. It should had been last year, but Bono had emergency back surgery. That's okay with me though. I'll probably enjoy it a lot more this year now that I'm healthier!</div><div>- driving my car - SUCCESS! I love gold leader...</div><div>- washing my car (inside and out) - SUCCESS! I love gold leader...</div><div>- building more websites for people on the side - WELL.... Not really so interested in that anymore. Time I guess.</div><div>- go to the zoo - NOT YET. Requires a lot of walking. I don't think I'm quite there yet.</div><div>- walk through a museum - NOT YET. I would like to do that though.</div><div>- being told I have a sexy body - SUCCESS! My husband tells me all of the time. I actually believe him! I'm looking better and better all the time. I don't look like I used to, but, then again, I'm not who I used to be.</div></span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-81813732738368589992010-08-18T22:17:00.003-06:002010-08-18T22:31:01.466-06:00My funeralI died and nobody told me.<div><br /></div><div>I sat looking at pictures of me from before I got sick. I don't look like me anymore. I think differently too. I've gone through so much in the last few years. I really can't remember what it was like before being sick.</div><div><br /></div><div>I saw a picture of me helping Halle open gifts at her first birthday party. You know that part of your neck up front you can see that sticks out on each side of the trachea? I used to be able to see that. I tried really hard while standing in front of a mirror to make that happen again. I couldn't even force it. No matter what I did, my neck just remained this pudgy thing with a round head on top.</div><div><br /></div><div>I had braces and no longer have the gap in my front teeth like I used to.</div><div><br /></div><div>I graduated from college and have had so many great opportunities laid out before me.</div><div><br /></div><div>But the reality is: I died and nobody told me. There was no funeral and nobody sent flowers or set up one of those funds at the bank to give to my favorite charity in lieu of the flowers. I didn't see any kind of obituary and as far as I know, I wasn't buried. I just died and then disappeared, very slowly over a long period of time.</div><div><br /></div><div>I kind of think of it like being in a coma, unable to recognize what's happening to you. Right now, this very minute while I write this with tears blurring my view of the screen, I am remembering back to being in the hospital after the first surgery and seeing myself walking through the halls in a circle, pushing a tank of oxygen and my heart monitor on wheels with my ass hanging out the back of my ugly blue gown. It's been like a dream, one that I'm not convinced I've awakened from yet.</div><div><br /></div><div>I died. I just know I did. How else can this be happening?</div>Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-7160343052144155929.post-54026953986082119072010-07-17T14:39:00.002-06:002010-07-17T14:50:45.384-06:00BlameWhy do we blame? To make ourselves feel better I guess. It gives us an excuse. It's a way to relieve yourself of guilt.<div><br /></div><div>There isn't anyone to blame for me being sick. I can't point a finger to someone or something else and say "This is all your fault! Why did you do this to me?"</div><div><br /></div><div>Frustrating.</div><div><br /></div><div>At a recent doctor appointment I expressed my concern that I didn't know when I would feel good enough to work out again. My doctor gently reminded me that I currently have medication induced Cushings and that I would probably not feel good enough for another year. A year?!?!? I don't know if I can hang that long. Hasn't this journey taken long enough already? I guess not.</div><div><br /></div><div>So, with nobody to blame and no guilt to be felt, I don't know how to feel about this. I'm mad. I know that. I feel somewhat helpless as there isn't a single thing I can do to make this go faster or become easier. It's like a waiting game.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-29665791892571551532010-06-15T17:41:00.002-06:002010-06-15T17:53:48.303-06:00ProgressI'm done with chemotherapy and radiation. I've graduated from college. I'm back to working full time at the University of Utah. I'm still losing my hair and fighting fatigue.<div><br /></div><div>I've commented before about reactions I get from people that see my baldness. Yesterday a woman asked me if I was scared. No, I said. Why should I be? I could be. A lot of people are in my situation. Would being scared change anything? Would it make me better if I was still sick? No. Being scare won't change anything. That's why I'm not scared. Being scared takes time and energy, neither of which I want to waste.</div><div><br /></div><div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-45711402136233921952010-05-10T16:51:00.002-06:002010-05-10T17:02:08.001-06:00What customer service!I received a call on my home phone this afternoon. I saw "Lamb's Grill" show up on my television caller ID and thought how odd that was. This is the restaurant we used to go to religiously on Monday nights until I started chemotherapy. We haven't been in months now and it has been missed. We always felt welcome. They saved us a booth in the corner every Monday night, whether we came or not. I would usually meet Craig and Halle there after school. They would be late because they got dressed up and brought a bottle of wine.<div><br /></div><div>It was them on the phone. I recognized the voice of the lady who sat us each week. One of our many servers, Kat, found our phone number and they called. Only to see how I was doing. This was our conversation:</div><div><br /></div><div>Heather - "Hello."</div><div>Lamb's - "Is this Heather Rasmussen?"</div><div>Heather - "Yes. This is Heather Rasmussen."</div><div>Lamb's - "The Heather Rasmussen that used to bring her daughter Halle (Holly) to Lamb's Grill?"</div><div>Heather - "Yes. That's me."</div><div>Lamb's - "How are you doing? We've been worried about you."</div><div>Heather - "I've been okay, but having a harder time since I started chemotherapy. It's been kind of tough on me."</div><div>Lamb's - "We're just glad to know you're still with us. We've all been so worried."</div><div><br /></div><div>She then went on to explain how she knows this is such an odd call and they were worried about calling the wrong Rasmussen household.</div><div><br /></div><div>That was it. They were just checking on me. Wow.</div><div><br /></div><div>I told Craig, so now we're going there for dinner tonight. It is Monday night you know...</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-15129695084243541342010-05-06T07:47:00.002-06:002010-05-06T07:53:54.193-06:00Busy being sick.I've been busy being sick. Sorry.<div><br /></div><div>I've become quite acquainted with the porcelain princess recently. I used to call it that back in the day of horrid hangovers, but now it's just a title bestowed upon the receptacle through which I poor my innards and stare relentlessly at while dripping from the various holes in my face. It's been a journey.</div><div><br /></div><div>I've gone in three times to the doctor to have an IV, once being admitted to the hospital. I'm better now. Eating anyway. That's always a good sign of improvement.</div><div><br /></div><div>I am well enough to take two final exams today. Tomorrow I graduate. Next week, more torture in the form of chemotherapy. Always an adventure. That's my life.</div><div><br /></div><div>So, I've been a little preoccupied lately. Please forgive me. I've been busy being sick.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-8010580442024179512010-04-06T21:39:00.002-06:002010-04-06T22:01:27.569-06:00What will life be like?I took my midterm on Friday after attending class. I did it. I had studied, so I was prepared. For the test. I was prepared for the test.<div><br /></div><div>Day five (post two) of chemotherapy. I thought I was soooo smart! I really thought I had the nausea under control. I had started taking the Zofran the morning of the first day and as directed after that: twice a day. During class on Friday, I started to feel really bad. I took my exam afterward and did it in 30 minutes. Then I went to wait for the professor to return. His office door was closed, I had knocked without answer. I started shaking. Another professor I had taken classes from previously asked if I was okay, was I getting ready to take an exam and just nervous. I told him I had already taken the exam and wasn't feeling that good. He asked what I needed and helped me out. My stuff was in my professor's office, so I couldn't leave without getting in there. Someone from the main office came and opened the professor's door. He was in there the whole time. All 20 minutes of me just sitting out there dying and waiting for him to return! My heart slumped inside of me.</div><div><br /></div><div>I went home to be sick. I was nauseated. For four days. I ate and threw up, ate and threw up, ... It was a fun Easter weekend. The first time in my daughter's life I didn't buy her an Easter outfit, put together her basket, hide the eggs, and do something fun with her.</div><div><br /></div><div>On Monday I went with Craig and Halle to radiation therapy. They wouldn't let me leave because I was dehydrated. Apparently I was so dehydrated that I took in two liters of IV fluid and still didn't have to pee. They let me go home. I started taking the Compazine. It worked. I ate dinner that night. Today, a little breakfast and some lunch. Dinner was tri-tip, pea salad and spaghetti marinara. I didn't eat much, but it did stay!</div><div><br /></div><div>So, a rough few days. I'm feeling better now. My cap and gown are purchased. The graduation announcements are on their way via UPS. Next week I finish radiation therapy. A few weeks after that, I graduate from college. About a week after that - chemotherapy is done. What on earth will life be like?</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7160343052144155929.post-7801125460809086282010-03-29T19:49:00.002-06:002010-03-29T20:08:30.356-06:00Meeting the manI almost passed out this morning when my IV was being put in. I was terribly light headed. The IV was put in my left arm this time, but on the top lower part of my arm. This is nicer than last time because I can type and use both hands freely. My nurse was Laural. She was very nice.<div><br /></div><div>I fell asleep in my chair with Craig by my side. At some point, Laural changed my chemo bag and Craig had to confirm it. So, when I woke up, they were changing the third bag! It was nice. </div><div><br /></div><div>Craig and I didn't bring anything to do - we just sat there and talked. It was also nice.</div><div><br /></div><div>When I was nearly done with my last bag of chemo, I noticed someone walk into the infusion room and go to the nurse's station. Then, he walked right over to me because when he turned around, he could tell I knew exactly who he was. Jon Huntsman Sr. Yes. This is the same man for whom the Huntsman Cancer Institute and Huntsman Cancer Hospital are named. He built these facilities in honor of his mother who died of cancer.</div><div><br /></div><div>Mr. Huntsman was there in a well-tailored white Nordstrom dress shirt and casual slacks. His sleeves were rolled up and he had an IV in his right arm. It wasn't too obvious, but I could see it. He talked to us for a few minutes about what he was doing there and that he had to go in for surgery in 45 minutes to get rid of some melanoma. I heard him talk to the guy next to me about how he never thought he would be a four time patient in the facilities he helped develop.</div><div><br /></div><div>I am very grateful for Mr. Huntsman and his efforts. They have given me the confidence to be treated locally. His facilities have brought in so many wonderful doctors dedicated to healing and discovery. When I found out that I had cancer, there was no question in my mind as to where I wanted to go for treatment.</div><div><br /></div><div>Thank you Jon Huntsman Sr. for all that you have done for everyone afflicted with cancer. You can never know how you have affected our lives.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-60454712526603523032010-03-24T23:16:00.002-06:002010-03-24T23:31:45.379-06:00Turning 36I turn 36 on Sunday. I have a certain infatuation with the 80s. Thinking back to when I was in high school, I remember loving the 80s then too. My favorite band - Duran Duran. I don't have one of their albums and I've never seen them live. I do have a few of their songs on my iPod, however.<div><br /></div><div>Speaking of my iPod - I love it. I love my iPod. It's the 16G - red. I love my car, too. </div><div><br /></div><div>I use the free valet parking at the hospital each day when I go for radiation therapy. I love seeing my car come back to me. It's gold with darkly tinted windows and it's fully loaded. If the skies are dry, my sun roof is open. If it's freezing, I just crank the heat. I can tell the valet's like my car too by the way they drive it back to me. Also, they always park it backwards (backed in). It's the most beautiful gold Honda Civic EX - and it's odd because it's a 4-door automatic. I love it. Plus, I only have to fill my tank every other week. Super good on the gas!!</div><div><br /></div><div>It's crazy to think that I have spent my entire 35th year dealing with this stupid illness. I was thinking about where I was a year ago. Manhattan Beach, CA. I've spent a lot of time with my mom over the last year. She's taken care of me quite a bit. Each surgery, every major test, etc. </div><div><br /></div><div>My parents are on their way to visit me right now, driving from California. I'm excited to see them. My mom will come with me to radiation Friday. Tomorrow I have to take a midterm after radiation. Then I'll get to see my parents! Yay! </div><div><br /></div><div>My dad has wanted to take me fly fishing for my birthday for the last few years. Last year, we said that it would have to be next year. Well, here we are and now we have to say it again. Next year.</div><div><br /></div><div>Birthdays make us think about life - past, present, and future. Like the realization of the passing of time, birthdays mark a specific day in our lives that present the most significance to us personally. It's our day, mostly unshared. A day that makes me thankful I'm getting one at all based on my most recent history. And I am. I am very grateful just to be having another birthday. Truly a blessing.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-68313492418235004602010-03-16T20:37:00.002-06:002010-03-16T20:54:08.730-06:00Nausea is evil. That's what evil is. Nausea.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8OOr8C7KY8Z_pDKlrFt8kHw-jCqUozIeHra32sPWbCEyXMkdp_AIJzBjaafCIZP5imAjnzVugeE5b0bfpTRz8YFoN8-cbnAtgtkdJgnzyXYAWKzqqbuG8TBrhRQuCTsVP2LDA51EFw80R/s1600-h/DSCF0172.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8OOr8C7KY8Z_pDKlrFt8kHw-jCqUozIeHra32sPWbCEyXMkdp_AIJzBjaafCIZP5imAjnzVugeE5b0bfpTRz8YFoN8-cbnAtgtkdJgnzyXYAWKzqqbuG8TBrhRQuCTsVP2LDA51EFw80R/s200/DSCF0172.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5449430579708443682" /></a><br />Three days of chemotherapy and radiation. No problems at all. The first day, the nurses gave me few prescriptions for Compazine and Ativan for nausea. They said to use it when I felt like I needed it. I'm tough. I was feeling pretty good. They had just loaded me up with a mega dose of steroids via IV. Nausea was the furthest thing from my mind. In fact, I felt good enough to eat, which was amazing after how I had felt the few days before.<div><br /></div><div>Well, here is some sound advice - some I need to take from myself.</div><div><br /></div><div>1. You will not know when you need to take anti-nausea medicine until it is too late.</div><div>2. Do not wait for signs of nausea - this will make taking the anti-nausea medicine actually harder to take.</div><div>3. Don't try to brave through the nausea. You'll go crazy and think you need to be taken to the hospital for IV fluids and mental help. This is not worth it.</div><div>4. Take the medication like they suggest - but do it that afternoon. You will hopefully feel a lot less nauseated and be able to eat and drink.</div><div><br /></div><div>These the things I did NOT do. I thought I would wait it out. I felt fine. Why should I think I would get nauseated? Plus, I have been nauseated before and made it through. By the time the nausea hit on about Saturday night (day 4), it was too late to take medicine. I felt like I would throw it up.</div><div><br /></div><div>Yes. I wanted Craig to take me to the hospital so they would fix me up. By Sunday, I could barely walk. I just wanted to sit or lay - mostly lay. I cried. I worried. I ate ice chips and finally got to the point where I could take a pill for nausea. I started eating a few dried apricots that night. By Monday morning, I was still feeling nauseated and throwing up quite a bit, but never what I had eaten or drank. It was always the stomach bile, yellowy stuff. I started taking the pills as suggested and then, after Craig took me to radiation, where I was wheelchaired in, I was actually craving something to eat. KFCs mashed potatoes and gravy.</div><div><br /></div><div>I continued to take the pills as directed. Craig asked what I wanted for dinner: mushu vegetable from Dragon Diner. So, that's what I had. Dessert? Lemon sour cream pie from Marie Calendar's. Later: frozen bean and cheese with green chile burrito.</div><div><br /></div><div>Today, I've been eating and drinking almost like normal. </div><div><br /></div><div>Here's the deal: just take the medication from the beginning. That's what I'm going to do next time to see if it works and I never have to go through this hell called nausea.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7160343052144155929.post-78586557500219817322010-03-11T04:17:00.002-07:002010-03-11T04:34:39.826-07:00My hand looks like a specialty fruit in the grocery store.It's 4:17 a.m. I should be sleeping like any normal person. Of course, I'm not normal - I'm Heather Rasmussen. <div><br /></div><div>I had my first day of chemotherapy followed by radiation. All went well. The IV is still in my right hand and covered with a little netting glove. It looks like a prickly pear found in your local grocery store. All the padding underneath makes my hand appear poofy and rounded. </div><div><br /></div><div>Craig was with me yesterday all day. Today I will be on my own.</div><div><br /></div><div>After days of feeling crappy, I felt pretty good yesterday after chemo, as I was told I would. I ate lunch, snacks, and dinner yesterday. Not bad for someone who again woke up feeling nausea and coughing pretty intensely. </div><div><br /></div><div>The nurses confirmed I will lose my hair in about two weeks. They provided a binder chocked full of everything you'd ever want to know about chemotherapy. In there, it recommends shaving your head before the hair starts its departing from your head. This is supposed to increase the feeling of control and release some of the anxiety associated with losing your hair. We can't use a razor, only a shaver, because my scalp will be sensitive and I won't heal well from cuts. </div><div><br /></div><div>I think I will have Craig do it this weekend to get it over with. I really don't want to go through seeing my hair all over the place again. Depressing.</div><div><br /></div><div>My boss has offered me the opportunity to take a medical leave of absence and they will maintain my health insurance for me - including the cost I would had normally paid out of my check each month to maintain it. He has also offered me the opportunity to work from home, which I think I will take. The most difficult part of my day, physically, is getting to and from work and traveling around to classes. It wears me out tremendously, and that was BEFORE I started these therapies. I can only imagine what they would do to me now.</div><div><br /></div><div>Today in chemo, I should only be there for a few hours I guess. I'll do some homework I think. There isn't much else I have going on. I have a short paper and a PR Press Kit to put together, due tonight via email to my professor. I have two midterms next week on Monday and Tuesday to study for. The review sessions are today and tomorrow, of course. Hopefully I will get the class notes today so I can study tomorrow and over the weekend.</div><div><br /></div><div>On another note: after being so sick for a few days, I did hit that golden marker in my weight I hadn't been able to drop below in over a year (200). I've been stuck at above 201.5 lbs for so long, I thought I'd never drop below. Of course, it took being so sick I couldn't really eat for a few days to make it happen, so I'm not really considering this a breakthrough or anything. It did feel good though to see the scale read 198.5 yesterday morning. The day before it teetered between 201 and 199.5 depending on the time of day. I'm pretty sure after my ability to eat had returned yesterday that I am now comfortably above 201.5 again. That's okay. It took about 5 years to put on. I can't expect it to all shed off in a matter of months.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7160343052144155929.post-86400722292099470382010-03-09T16:05:00.002-07:002010-03-09T16:26:12.262-07:00I must be crazy. I don't think that's a symptom though.For the last two days, I have woken up coughing. I cough so much that it causes me to throw up. I went to work yesterday, where I was told by my boss, and others insinuated through looks, that I looked ill. I soon went home. Craig brought some food home for lunch: tacos. After he left, I slept.<div><br /></div><div>This morning I coughed so much, I again threw up. In fact, I threw up in my bath. Have you ever done that before? Well. Let me tell you it is gross. Luckily, I haven't been able to hold much solid food down, so it was just liquid-y. I drained the tub, refilled, rinsed my hair and got out.</div><div><br /></div><div>I had to go to the hospital this morning for a radiation treatment verification. Basically, they drew all over my chest, which was bared to whomever walked into the room, and took a bunch of pictures. (Don't go looking for these suckers to show up on my facebook account!)</div><div><br /></div><div>At least my cold, which is causing the cough, won't stop my starting chemotherapy tomorrow. I thought it would, but I was told that if they had to hold off doing chemotherapy on people that had a cold, people would never get therapy!</div><div><br /></div><div>I'm missing a lot of work from being sick. I don't have any more sick or vacation leave left. I'm already set to work only 30 hours per week. I have three classes I barely attend. I'm dealing with a legal issue, my 11 year old daughter is growing up and I'm missing it, I'm trying to find a job, and with all of this - I'm trying to get better.</div><div><br /></div><div>I'm trying to figure out what I can do to make life easier. Craig keeps telling me that if he were in charge of me, I wouldn't had started this semester at all. But he admits he doesn't know my full ability for what I can handle. In a lot of ways, I agree with him. I shouldn't had started this semester at all. But now, here I am, eight weeks into it, and really I only have five left (after my two midterms next week and spring break). I'm passing my classes. I know I can do it - but will it be worth it? After all, what good is a degree if I'm too sick to use it? But will I go back if I stop now?</div><div><br /></div><div>I can't afford to miss any more work. I have to keep my insurance (don't even start talking to me about socialized medicine!!). I have no choice there.</div><div><br /></div><div>I have help in my classes. If I can make it through and finish these classes, I'll be done.</div><div><br /></div><div>I need to feel better. My endocrinologist said we could not taper so much this quickly. I think I need to taper back up so that I feel good while I'm going through this. I'm losing weight and looking better. My jeans can slip right off without unbuttoning or unzipping.</div><div><br /></div><div>I think that until I finish chemotherapy, I should stay on the 60 mg hydrocortisone. I will ask and let you know what he says.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-39794780907824925402010-03-08T11:54:00.002-07:002010-03-08T11:58:01.056-07:00My body doesn't like me anymore.I don't want to be hurt again. I don't want to be stuck with another needle. I'm afraid. I don't want to do this anymore. I want to quit. Please let me quit. Please stop it from hurting me. I hurt. It hurts. I don't like it. Please make it stop. I hurt all over. My body has stopped working. It said it doesn't like me anymore, so it is quitting. I just don't want to hurt anymore. I don't. please please<div><br /></div><div><br /></div><div>please. make it stop hurting.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-46470281406935440652010-03-03T07:14:00.003-07:002010-03-03T07:48:13.385-07:00Progress is always goodI drove up to the Huntsman Cancer Hospital yesterday for my radiation planning session. There were so many people taking care of me! I couldn't believe it and there is no way I could remember all of their names, although I can remember most (Heather, Jane, Matt, Josh, Ruth). <div><br /></div><div>At my appointment I was poked eight times. I needed an IV for the CT scan, but the first two IVs didn't take. (I have such horrible veins!) I laid on the CT table with my gown open to the chest. To ensure some amount of privacy, they covered each breast with a cloth. </div><div><br /></div><div>My doctor came in and gave me some great news: the results of my octreotide scan last week was negative! This means there is no cancerous tumor-like anything left in my chest, abdomen, or pelvic areas. Now we can proceed like planned! Thank goodness. I don't think I could had handled another hurdle in this race.</div><div><br /></div><div>After the scanning, I was tattooed with little dots in five places. These dots, combined with the mold we created yesterday for me to lay in, will make the radiation treatments consistent, quicker, and more effective. I'll start radiation and chemotherapy one week from today.</div><div><br /></div><div>On the Cushing's syndrome end of things, I haven't lost a lot of weight yet, but I think the weight may be redistributing. I can now take off my jeans without unbuttoning or unzipping them. My face is showing some changes too. This is all very encouraging!</div><div><br /></div><div>Now, if math was not part of learning how to compile and analyze research, I would be a VERY happy person right now. My Quantitative Analysis in Communication class is tough. With all of my contacts in mathematics, you would think this should be easier for me! Or at least I could get good help with it.</div><div><br /></div><div>Anyway, progress is always good. That's the direction I'm going in - forward. Now, I just need to get through therapy, graduation, and move on to our future!</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7160343052144155929.post-10807358268414080322010-02-26T08:56:00.003-07:002010-02-26T09:42:48.386-07:00Just say no.I had the octreotide scan this week. Tuesday I went in at 10:30 a.m. for the injection of the radioactive agent. I asked them to leave the IV in so I wouldn't have to get poked again the next evening for the CT scan. It was weird sleeping with the IV in - I don't know why since I'd slept with all kinds of tubes in me at the hospital.<div><br /></div><div>I ate an early lunch of potato leak soup at 11:30 a.m. Tuesday. That was my last solid food until Wednesday at 8:30 p.m. It was awful. I had my short scan (2 ten minute scans) on Tuesday afternoon. They were easy. I almost fell asleep they were so easy. Wednesday I had an appointment with Dr. Jones at 10:00 a.m. He lowered my prescription for Hydrocortisone from 60 mg to 50 mg per day. We talked about the chemotherapy and radiation. Because I will need a dose of steroids each chemotherapy injection, my progress in tapering will slow. The steroids at chemotherapy are to help with nausea.</div><div><br /></div><div>Wednesday afternoon, I went to the hospital for my scans. I got there at 12:30 to pick up my two bottles of contrast so they could be refrigerated in Nuclear Medicine. My appointment was at 1:00 p.m. They were running behind because of some last minute inpatient scans that needed to be done. I didn't get in until just after 2:00 p.m. This meant I would not be able to start drinking the contrast for my 5 p.m. CT scan on time. The scans weren't too bad. My arms were hurting from laying above my head for 45 minutes each scan. I got through it.</div><div><br /></div><div>At 4:30 p.m. I was finally done with the scans, but now way too late to do a 5 p.m. scan. You have to start drinking the contrast an hour and a half before the scan. They rescheduled me for at the hospital (I was going somewhere else before) for 6 p.m. I started drinking the contrast and knew it was not going to be good. Around 5 p.m., I went to the guy behind the counter and told him there was no way I was going to be able to drink all of the contrast. I asked him whether they would rather have me drink it all and throw it up OR drink some and still have it in me when I have the scan. They asked me to just drink a few sips every 15 minutes or so. I did.</div><div><br /></div><div>Craig and Halle came about 6:20 p.m. and sat with me while I waited. Apparently the CT machine at the Huntsman Cancer Institute broke down and they sent all of their patients down to the hospital. Again, I had to wait beyond my appointment time. Around 7 p.m. I finally got taken back for my scan. As I was walking back with the nurse, she went over the scans they would be doing, my abdomen and pelvis. Hmm? No. I'm pretty sure I'm supposed to also have my chest done. The nurse argued that the orders did not include the chest. I told her I have lung cancer and I'm pretty sure they need my chest scanned. She called and got the order corrected.</div><div><br /></div><div>Luckily my IV still worked so they didn't have to poke me again. This was the only positive thing about the entire process. When the scan was over, I went to change back into my clothes again. As soon as I came out, I went into the bathroom and threw up. Craig came in and helped me. Another public bathroom throw up episode. Yuck. Actually, that bathroom was cleaner than mine at home. We were in a funny little part of the hospital - a room that had a dressing room, bathroom, and waiting room all in one kind of. Anyway, I wasn't feeling that well.</div><div><br /></div><div>Craig asked what I wanted for dinner. I had been thinking about it and knew exactly what I wanted and from where. Little America diner: Roast Baron of Beef with Gravy instead of Au Jus, Salad with Ranch Dressing, Crackers, and and Iced Tea. At 8:30 p.m., that's what I was eating. The mashed potatoes were the best. I started having breathing problems at dinner.</div><div><br /></div><div>We got home and I knew I wouldn't be going anywhere the next day. Craig suggested that Halle stay home with me the next day. She did. Poor thing. She had to hear me throw up in our bathroom a few times. She took really good care of me yesterday. I ate a little dinner - hot beef sandwiches with mashed potatoes (they just sound so good and easy on the tummy). I had to resist the temptation to throw up again. It was hard.</div><div><br /></div><div>Today, I am home again but Halle is at school. I'm just trying to feel better. I really hope I don't ever get asked to do that test again. I won't do it again. I'll have to respectfully decline the opportunity. If the doctor asks why I won't do it - I'll ask them to go and give it a try first, then let me know how important they think it is versus the feeling of going to hell and back again. And then, if they decide I should still do it - I'll say no.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7160343052144155929.post-84155552884327846772010-02-16T22:20:00.002-07:002010-02-16T22:49:09.963-07:00Building up.Life is interesting. I look back at my life, all nearly 36 years of it, and wonder if I'm supposed to do something great. All of these experiences I've had in my short life so far - have I gone through all of it for a greater purpose? Am I supposed to help others who suffer through similar situations? Am I supposed to try and make things better?<div><br /></div><div>People often ask me how I do it all: work, school, mom, wife, health problems, etc.</div><div><br /></div><div>I think about everything that's happened to me and realize my life has been building up to this event. Just like it has over the last year - If I had been told last January when I went to my doctor for hair loss that I had the rarest form of lung cancer in the world that also happened to cause a funny, rare syndrome called Cushing's, I would had probably went into deep depression - instead, I got it gradually throughout the year.</div><div><br /></div><div>So here I am. This is me. I cannot, and I never have, let my past be an embarrassment or lost, no matter how bad it was. What, you may wonder, could she had gone through that could be so bad? Here it is, in quick synopsis since this isn't a novel:</div><div><br /></div><div>Grew up in a physically abusive home - father (I use that word loosely here) beat my mother and me (with a razor strap). My little brother eventually threw it in the big garbage can in the alley.</div><div><br /></div><div>My parents finally divorced when I finished 8th grade.</div><div><br /></div><div>At the same time my parents were divorcing, I was kidnapped, raped, and left in a field out in the middle of nowhere. I was fourteen. It's a long story about how I got back home, but I did. The men that did this are still out there.</div><div><br /></div><div>I moved out on my own when I was nineteen to Salt Lake City. At one point I had no money for food. All I had was a supersized boxed of cornflakes and a giant can of powdered Country Time Lemonade. Yes. I actually tried cooking the cornflakes in lemonade. No. I did not eat it.</div><div><br /></div><div>I got married at 24 and had Halle the same year.</div><div><br /></div><div>I got a job in the OB/GYN Department at the University of Utah in 2001 working in the file room. It was an entry level job and I considered it exactly that. A few months later, I became an executive secretary for a doctor.</div><div><br /></div><div>Over the last nine years I have been at the University of Utah, I have changed jobs seven times within four departments, all in the sciences.</div><div><br /></div><div>In October 2004, I fulfilled one of my dreams of going to New York with my husband Craig. It made me realize that I wanted more out of life.</div><div><br /></div><div>Over the following months, we decided me pursuing a degree would help in achieving that goal of getting "more out of life." </div><div><br /></div><div>I found out that I could get a scholarship through my Indian Tribe. So I applied. I got it. So, I came up with a plan to finish a Bachelor's Degree in five years.</div><div><br /></div><div>With a year and a half left before graduating, I found out I was sick. You know the story from here.</div><div><br /></div><div>Now, I'm a few months away from graduating with a Bachelor of Science in Mass Communication with an emphasis in Public Relations and in Political Science - a dual major. I start radiation and chemotherapy on March 8th.</div><div><br /></div><div>I'll graduate on Friday May 7th and start my last three-day round of chemotherapy on Monday May 10th.</div><div><br /></div><div>So, you could say I've been building up to these events in my life. Could I help others? Is that what all of this has been for? I just hope it's been for something.</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7160343052144155929.post-59941672026350611702010-02-09T20:41:00.003-07:002010-02-09T20:49:11.051-07:00Long time, no newsI haven't written in a while because there isn't a lot to say.<div><br /></div><div>I confirmed with my endocrinologist that the pain I am experiencing, and it has been quite dramatic, is caused from the lack of cortisol in my body. The hydrocortisone I am taking really does only stay in the bloodstream for about an hour. I'm taking in one day about three times as much as the normal person naturally creates.</div><div><br /></div><div>Sunday night was the worst so far. My husband helped me to bed. I cried. It was awful. I rub my legs against each other to try and find comfort. I rub my arms, head, chest, shoulders, neck and as much of my back as I can reach. I wiggle and move constantly trying to relieve the pain.</div><div><br /></div><div>The medication gives me diarrhea. I have a decreased appetite. My skin is clearer. I still haven't lost much weight.</div><div><br /></div><div>At this point, I am fighting two battles: Cushing's and Cancer.</div><div><br /></div><div>With one medication, the steroid, I will conquer Cushing's syndrome.</div><div><br /></div><div>In a few weeks, I will begin the final chapter of my battle against cancer.</div><div><br /></div><div>The radiation oncologist said the radioactive agent needed for the octreotide scan is expected to become available here in mid-February. Whether it is or not, I have my appointment with her to do the radiation planning session on Monday February 22nd, I think. After that, it takes about 7 to 10 days to get the plan completed and start the therapy.</div><div><br /></div><div>So, for now, it's just "deal with it" and move on. There's nothing else I can do, so why worry about it?</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-64696437345774258972010-02-01T06:29:00.003-07:002010-02-01T06:46:46.868-07:00Ow. I must be getting better.My endocrinologist, Dr. Jones, apologized when I saw him last week. He said he was very happy when I told him that I had pain and discomfort in my arms and legs after the last taper of steroids. He explained that the pain meant the only Cushing's I was experiencing was being caused from the steroid itself, not me. He said that with the taper, I should feel that kind of pain because the cortisol is not supporting the Cushing's. The pain means the Cushing's symptoms are leaving my body. That is good.<div><br /></div><div>Well, my doctor will be ecstatic to find out how much pain and discomfort I am in everyday now that I have changed to a different steroid. I take 40 mg hydrocortisone each morning around 7:30, and then I take 20 mg in the afternoon around 4 p.m. This steroid only lasts in the body for about an hour and I can confirm that.</div><div><br /></div><div>Around 9:00 a.m., my head starts to ache (all over - face, head, and neck). By 9:30 a.m., my body feels like I have the flu - aches all over. Joint pain has been prevalent. My knees and ankles, hips, back, neck, shoulders, and elbows: ow. By about 10:30 or so, I am usually feeling well enough to do things again. It all starts up again about the time I get home at night. Of course, I'm still recovering from the surgery itself. My right shoulder, side, breast, and back all have their pains and sparklers.</div><div><br /></div><div>I find out on Wednesday if I am going to have to do the Octreotide Scan or not. I hope we can just get started on the therapy. I really hate that test.</div><div><br /></div><div>In a nutshell, if pain means I'm getting better, then I expect to be in perfect health very soon.<span class="Apple-tab-span" style="white-space:pre"> </span></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7160343052144155929.post-7421258625195673602010-01-27T21:14:00.002-07:002010-01-27T21:31:28.687-07:00Going HormonalSteroids. Who knew they were so important? Today I learned something about the difference between the one I have been taking and the new prescription I was given to start tomorrow.<div><br /></div><div>The steroid Dexamethasone replicates all of the symptoms of Cushing's. It is given to patients post surgery until has been determined they no longer naturally create cortisol. Dexamethasone does not interfere with naturally occurring cortisol, so it is still measurable. Once it has been determined cortisol is no longer being naturally created in your body, a change to a different steroid occurs.</div><div><br /></div><div>The steroid Hydrocortisone only lasts in the blood stream for one hour. I'm only going to be taking it twice a day. This means my body will only be exposed to a steroid for two hours per day. The other 22 hours per day will be cortisol/steroid free, allowing my body to finally recuperate from Cushing's syndrome. This is when I should start seeing changes - finally!!!</div><div><br /></div><div>I kept thinking there was something still wrong with me. I mean, I have lung cancer, but apparently, I don't have Cushing's anymore. My doctor said he is very confident that my Cushing's symptoms are related to taking the steroid and that I am not experiencing a naturally occurring Cushing's.</div><div><br /></div><div>Hopefully I'll start to see changes now! That would really lift my spirits.</div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7160343052144155929.post-30891307613914500312010-01-24T21:02:00.002-07:002010-01-24T21:21:34.225-07:00What can I do about it?Some people ask me how I can keep going with everything. I work 30 hours a week, take 10 credit hours at the university, grocery shop (with the help of my 11 year old daughter Halle), cook meals, and deal with lung cancer and Cushing's syndrome. What else can I do? I deal with it.<div><br /></div><div>Really, there isn't a lot more I can do than what I'm already doing, so why stress about it? Life must go on. I am still alive you know!</div><div><br /></div><div>I could cry about it. I do sometimes.</div><div><br /></div><div>I could sit around worrying about it. Will that change anything? No. (Well, it would make me less productive in other areas of my life.)</div><div><br /></div><div>I could waddle all up in a little ball and hide myself from the world. But then I would be alone and that's no good at all.</div><div><br /></div><div>I could be angry. With who? For what?</div><div><br /></div><div>There are all kinds of feelings people say they would have if they were in my shoes. Luckily they don't have to be in my shoes - their a "one size fits ONLY Heather Rasmussen." Believe me, you don't want to be in my shoes.</div><div><br /></div><div>Really, you never know how you will react to a situation until your in it. That's why people in the military, emergency first contacts, flight attendants, etc. do training in simulated situations. This gives them at least the feeling of what it would be like to be in an emergency where their individual talents or training come into play. You can't just read about how to react and expect that will be the same as the real life experience.</div><div><br /></div><div>This isn't how I thought I would react to having cancer. I think I thought I would do all of those things people have said they would do - cry, anger, hide away, worry (and one that nobody has mentioned - die). I thought that cancer meant I would be done for. That death was surely on the way.</div><div><br /></div><div>When I tell people how rare my lung cancer is, they look at me like they have just seen a ghost. I immediately tell them that rare does not equal incurable. It just means that there aren't enough people like me to study, so the doctors have to kind of wing it with treating me.</div><div><br /></div><div>So, I could do all of those things that wouldn't help my situation. But why? There are so many other things I have to take care of. Plus, aren't there more things out there to worry about (school), hide away from (negativity in the world), cry about (Haiti), or be angry about (that just raises blood pressure and a bad vibe, so I don't recommend it ever)?</div><div><br /></div><div>My point: Don't cry over spilt milk. Clean it up and move on.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-53288804359334404212010-01-22T07:47:00.000-07:002010-01-22T07:47:33.730-07:00Life is like a smorgasbord.<div style="text-align: center;"><br /></div>A smorgasbord is basically a Swedish version of a buffet. Since I like the word smorgasbord better than buffet, I'm using it here.<div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 219px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqnU-0tySCkfNMeK-Tl3vdazY0kBuVk6bOK_Zhg1258nFLeIpJVAV6DPDlQ926Jmf2cGPqJXYS6ZczEUVx84kHn1xjvN4NnF_wMLke888B67-QanEsFhyQVGt_OGIglDSNchxlLCMnW4PI/s400/melbourne_cup_smorgasbord.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5429352803469091714" /></div><div>If you were to walk down a smorgasbord and take a look at all the dishes available, it can be quite intimidating. After all, you only have one plate to fill. You can only put so much food on that plate without stuff falling off all over the place and hitting the floor.</div><div><br /></div><div>What if you knew you'd have to try all of it. Yep. All of it. Not only would you have to try it all, but you could only try it in the order it was laid out on the smorgasbord. Whether you like it or not, there it is and you are going to have to put it on your plate and eat it.</div><div><br /></div><div>Would you want to walk around the whole smorgasbord to see what was there? Would it be encouraging or discouraging to know what you get to and have to eat?</div><div><br /></div><div>Well, I would suggest you just take it one dish at a time. Sometimes it's better to not know what is coming. Even if you like what's coming, we all have to swallow a bitter (pill) at some point and it might be easier if it just lands on your plate with a big serving of chocolate cake and spaghetti marinara.</div><div><br /></div><div>From the sweet and savory to the tangy and bitter, we will all taste a little of each in our lives.</div><div><br /></div><div>I see how life is like a smorgasbord. Lot's of variety. Balance. Good yummy stuff. Icky stuff too.</div><div><br /></div><div>Make sure to not overload your plate. Don't worry! It will always be full, even if it isn't always with what we want at the time. Eat it up and eventually, you'll get what you want.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-58328811232039852872010-01-21T14:58:00.003-07:002010-01-21T15:35:02.285-07:00Alert!! Nationwide Shortage of Radioactive Agent!!I met with the radiation oncologist yesterday. Craig was with me for the appointment that lasted nearly three hours. Three painful hours. Between the physical pain of being examined (I'm not sure why it hurt so badly) and the psychological pain of disappointment, I was wasted after three hours. Craig was a rock.<br /><br />We talked about what radiation would involve. I'll go in for a quick CT scan of the chest and they'll tattoo marks on me where they want the beams to go. I'll lay in a mold created for my head, shoulders and back so each time I go in, I'll be in the same exact position. Each treatment takes about 15 minutes. Side effects are minimal.<br /><br />So, this I expected. I thought she would talk about the radiation and side effects, duration, etc. I did not expect a delay in getting started.<br /><br />I have to take a side track here for a moment so you understand what it is like to have so many doctors working on me at the same time.<br /><br />------I get information about test results, plans, and other things from the other doctors who didn't come up with the plan or order the tests. Let me explain. A week ago Monday I went to my surgeon who informed me that it was okay for the oncologist to get started on the plan for radiation and chemotherapy. I said, "okay." I didn't know the plan was to have the chemotherapy for sure. It had been suggested as a possibility, but never confirmed. The next day I saw the oncologist who notified me that the surgeon had removed two, not one, cancerous tumors from my chest. <span style="font-style: italic;">Really?</span> Yesterday, the radiation oncologist was concerned about my elevated ACTH. I had heard it was still there, but didn't know it was elevated. My endocrinologist said he wasn't concerned about it at the time, so I wasn't. Now, we get to it: the psychological disappointment.------<br /><br />The radiation oncologist spoke with radiology, my oncologist, and my endocrinologist while I was in the patient room with Craig. This is why the appointment lasted for so long. She had paged them all and spoke with each about her suggestion for a plan. They all agreed. Why radiology was involved in the conversation is because they were the first, next step in my treatment. I have to get another octreotide scan. Yes. This is the same radioactive scan that made me sick last time. I only remembered how horrible the second time was this morning on my way to school.<br /><br />This is how it works:<br /><br />Day 1 -<br />2:00 p.m. Octreotide (radioactive agent) injection via IV<br /> 4:00 p.m. begin eating/drinking only fluids (including a lovely sparkling lemon flavored laxative)<br /> 6:00 p.m. liquid dinner and 3 laxative pills<br /> 10:00 p.m. insertion of "other" laxative<br /> Nothing after midnight<br /><br />Day 2 -<br />10:00 a.m. 20 minute scan<br /> 1:15 p.m. Pick up 2 bottles of contrast from x-ray and have placed in fridge in Nuclear Medicine.<br /> 1:30 p.m. Three 45-minute scans (chest, abdomen and pelvis) with arms laid above head. Very painful position, even with support like pillows. Luckily the use of an iPod is okay.<br /> 3:00 p.m. Begin drinking contrast, one third of a bottle every 20 minutes. (Yes. Your calculations are correct. This is impossible since I am laying on a table being scanned when this is supposed to be occurring.)<br /> 5:00 p.m. CT scan of chest, abdomen and pelvis. Use of IV for pushing through another form of contrast during the scan.<br /><br />The first time I had this done, I cried for the last half of the radioactive scan. The second time, I was successful at falling asleep for portions of the radioactive scan with the help of my iPod. However, I was wasted. I didn't finish my contrast. Instead, I rushed to the bathroom in the Huntsman Radiology Clinic and threw up in the toilet. A public toilet. Gross beyond gross. It is one thing to throw up in your own toilet at home, but in a public toilet is just disgusting! I hadn't done that since I was a kid I think.<br /><br />Anyway, I haven't had the best experiences with this test and I can honestly say that when the radiation oncologist told me that I had to get this done, I was thoroughly disappointed.<br /><br />She also found out that there is a nationwide shortage of the octreotide agent. The radiologists hope to get some soon, but they have no idea when it will arrive. I should know in the next couple of weeks if it will be available. If it isn't, then we will proceed without the scan.<br /><br />The whole point of the scan is to find a concentration of ACTH creating cells. Since radiation is directed at specific parts of the body, they want to make sure they are optimizing the beams radiation to the right places. Unfortunately, this also means I have to wait to start the chemotherapy because the chemo might skew the results of the scan. This means, at this point, I will not start any therapy at all for at least three weeks. This also means that my therapy will run into the time of graduation. This is the most disheartening of all.<br /><br />I had such a vision of what it would be like to graduate. It seems like lately all of the things I have been looking forward to - at least my view of how they would be - are changing before my very eyes. It's not like I won't graduate still, but it just won't be the same. I hope I have the energy to walk across the stage to pick up my fake diploma. I would like to walk across two on May 7th, but I'm not sure I'll have the strength. Of course, knowing me, I'll ask someone to just drag me across or put me on their back to hoist me across, like a finish line. That is what graduation is like for me - a finish line. At this point, it isn't about winning the race, just finishing. I'm going to cross that finish line on May 7th. I promise.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7160343052144155929.post-20153898972282279892010-01-20T06:49:00.002-07:002010-01-20T07:00:17.230-07:00This is hard.I'm gaining weight. My husband wants to go out to dinner almost every night. I think he thinks (good communication going on here) that I might be too tired to cook, so he always wants to go out. The problem is that there aren't always the best options on menus at restaurants. I also have been eating the same way for the last few years without much change in my weight. (The only exception was the few months I ate nothing but Nutrisystem. I did lose some weight then.)<div><br /></div><div>So, with Cushing's syndrome or disease, a patient can eat 500 to 5000 calories in a day and it doesn't effect their size or weight. The feeling of being hungry all the time is part of Cushing's.</div><div><br /></div><div>What happens now that I am supposedly free from Cushing's? Well, like with all things - I've become accustomed to eating a certain way for the last few years (at least) and now I need to watch what I eat because the consequences are different. My body actually processes food/calories differently now. ALSO, I'm feeling like a lazy coot. I just get enough exercise I think to not qualify me for being comatose. If I didn't go to work and class, I think I'd feel like I was in some kind of coma.</div><div><br /></div><div>I talked to Craig and told him that we need to eat at home. I told him that I need to cook healthier and I need better options for food. As a person who loves to cook, and eat, this is really hard. I love to be creative in my cooking and thoroughly enjoy serving up fantastic meals to my family. That doesn't mean I can't be creative or serve up great meals, I just have to use healthier components.</div><div><br /></div><div>Just because it's winter does not mean any of us have to put on a winter coat.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-10844550934297969472010-01-18T12:09:00.002-07:002010-01-18T12:19:32.693-07:00Silky smooth - like a baby's butt.<div style="text-align: center;"><br /></div>On Saturday my husband will be shaving my head for me. I don't want to wait for it to fall out. I don't want to spend money on another haircut. Shaving it smooth with a razor and shaving cream will be the routine for the next several months. I'll let it start growing back again after I'm done with chemotherapy. I hope I can get started on the chemo soon so I will be done before school is out in May.<div style="text-align: center;"><br /></div><div>I'm considering a wig, but don't know how I really feel about it yet. To start off with, I will probably just wear hats I think. Some people say to wear scarves, but I don't even know how I would do it. </div><div><br /></div><div>So. Here is a picture of my from this week. Just over five weeks out from surgery. I think I have a little less chin fat.</div><div><br /></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhILkQj7vlQdCcbuMIZAc1NHlKQIXpQK6MFLkNH1YxOULFMNtlxpcYs4GvSt8iPREX9BtD6r3MSAfF4ay0rvdtaJU6u-BhyoMyqvJ79DAzf_lCO7KLRgC719vpRexlDNIE-Rs4G0wXHuN9U/s400/Photo+103.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5428161418093737794" /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7160343052144155929.post-3590119910935187542010-01-15T05:22:00.003-07:002010-01-15T06:10:54.654-07:00Argh! What a week. We get Monday off, right?Human rights are awesome. I love them. I've actually studied them, even. But, I must say I am especially excited about them after this week. Not that I've experienced some kind of human rights eye opener. No. I'm not that humble right now. If anything, I should be thanking our government for a holiday meant to remember human rights (aka - Martin Luther King Day). Believe me when I say I am looking forward to this "holiday" coming up on Monday. No work. No school. I mean, it's not like we get the family together and celebrate with some extravagant meal or anything. There aren't really any songs or decorations associated with the day. There's always shopping - stores can make a sale out of any "holiday."<div><br /></div><div>I am especially excited for this coming holiday though. I think I will need the long weekend to get over this last week. Mentally and physically, it has been a rough ride.</div><div><br /></div><div>Salt Lake City has hit a number one in the nation, but not one to be proud of. This week we had the worst air quality (dirtiest air) in the U.S. People like me aren't supposed to be out in that bad of air. I'm already compromised simply by my lack of a lobe in my right lung. I used to just have asthma and every year since I have lived here, I have used my emergency inhaler more during the January/February months than during the entire rest of the year. I didn't even have asthma at all before I moved here.</div><div><br /></div><div><br /></div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBorQoKGWpGi1vSuyYAuLvXQAlxPbKjHu0kWnMm1pcvmmNL1diVo30aFzI0FLQur4LTmf-5ClwY6jRFksQMkhAaSPEnzvXiM3MHislmfHWnILrTLAJgcBEcV6SThSwjBjKe85_UTM6DA1w/s1600-h/Picture+2.png" style="text-decoration: none;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 351px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBorQoKGWpGi1vSuyYAuLvXQAlxPbKjHu0kWnMm1pcvmmNL1diVo30aFzI0FLQur4LTmf-5ClwY6jRFksQMkhAaSPEnzvXiM3MHislmfHWnILrTLAJgcBEcV6SThSwjBjKe85_UTM6DA1w/s400/Picture+2.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5426952453938211106" /></a><div style="text-align: center;"><br /></div><div style="text-align: center;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span" style="color:#FF0000;">Where is Salt Lake City? Just look for the orange/red blob on the map.</span></span></div><div style="text-align: center;"><span class="Apple-style-span" style="color:#990000;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div><span class="Apple-style-span" style="color:#990000;"><span class="Apple-style-span" style="font-size: small;"></span></span>So, when you have to actually leave your house to go to work and school, it makes it difficult to avoid the bad air outside. My breathing has been more labored, trying to walk to my office from my car, back to my car from my office, from my car to class, from class to my car, from my car to my... I think you get the picture. It's been a lot of walking.</div><div><br /></div><div>I have also had a lot of pain in my incision area because I am no longer taking the day time Lortab for pain. I take about 1000 mg of Ibuprofen once or twice a day to help with it. I had forgotten about the pain there and in the shoulder after my first surgery. I have tried eating with my left hand more often, but I haven't attempted the left handed use of my mouse at work.</div><div><br /></div><div>The mental toughness of the week is expressed thoroughly in my previous postings (radiation/chemo - not getting consumed).</div><div><br /></div><div>So, me and my husband talked about it and and talked about it again. I have requested, and it has been approved, for me to temporarily decrease my hours at work from 40 to 30 per week. I will be going in later each day, rather than going home early. Hopefully my new schedule at work will accommodate less walking to and from my car for work and class, and also make plenty of time for therapy when that starts.</div><div><br /></div><div>I know I'm going to feel cruddy after therapy, especially the chemo. I guess these therapies can really take it out of you. Craig will be with me for those, so he will keep it real for me. I'd probably try to squeeze in a trip to TJ Maxx or Tuesday Morning looking for discount Le Creuset between therapy and work/school. Craig will most likely force me to go home and sleep. His wiseness can be so irritating sometimes!!</div><div><br /></div><div>Today I meet with the counselor at disability services on campus. So, okay, I guess I am a tiny bit humble. I have completely avoided this step for the last year. I just kept telling myself that I didn't have a disability, so why would I need to ask for help? I hate asking for help. It's like admitting you can't do it or something. Well, I may not be able to do it all by myself this time.</div><div><br /></div><div>My desire to finish school is apparently greater than my need to prove I can do it on my own. </div><div><br /></div><div>So, today I will finish this week off knowing I am on the right track to do what needs to be done to accomplish all of my goals. One of my goals has actually changed and Craig is very supportive, if not darned right excited, of it. Location, location, location. That's all I'll say about that for now. This post has already stretched on, and on, and on...</div>Unknownnoreply@blogger.com0