The other night I was watching "Man vs. Food" on the Food Network astonished by how much food the host can eat. He starts his day by eating two or three famous and delicious looking meals followed by some outrageous challenge where he has to eat a large portion of his body weight in more delicious food. The host always starts out strong and eating through at least half of the desired amount as the crowd cheers him on in excitement. Then about a third or half of the way through the plate he hits a wall. The wall of panic. Will he finish or won't he? How can he re-strategize to complete this task and be victorious? Sweat pours down his face as he makes each and every move after that point. I enjoy making humorous analogies of my cancer and this is another to ease my stress. Instead of mounds of food and a New Yorker as the host it is mounds of cancer and a Missourian dooking it out. MAN (woman) VS. CANCER! I am a third of the way through it and it has gone by so easy, but I still have so much further to go and I haven't even hit my wall. This scares me a bit.
"Time out!" As a kid I used to use those exact words so I could dodge the impending doom of being tagged in a game of hide and seek or chase. Using those two words would allow my anxiety and stress to just release for a moment while I recollected my thoughts and strategies to continue the game. As I am winding down in my chemotherapy countdown I am anxiously awaiting my "time out." The moment when I can say I am done with phase one and can regroup before phase two of this three phase year. The past four months have flown by so incredibly fast that I haven't really even begun to think about phase two of this whole alien-disease annihilation. The chemotherapy has been tough on me physically and emotionally but I was prepared. I knew it would be hard and going in with that mentality actually made it much easier to handle. It is like when you plan ahead so far and you feel so comfortable and excited to be "ahead" but then slowly real-time creeps up on you and you no longer have that buffer of planning or time. Now you are in present time and you need to use the "time out" before you self-destruct. My "time-out" is coming up and I need to get my ducks in order so I can figure out my next move: phase 2 surgery.
As most of you know I have 2 more chemotherapy appointments left. After my last one on December 12 (Thursday) I have an appointment that same day with my surgeon. During this appointment I am hoping to get some insight on what day I will have surgery (early January) and what my options for surgery will be. I have thought long and hard about some of the options I know I am afforded in this decision making process and others I am just as confused as I was the day I first spoke with my surgeon months ago. My head is spinning with various questions and paths I am curious about when it comes to this surgery. I have spoke to numerous cancer survivors in my months leading up to this and it seems like every person has a different outcome, a different pathway to being cancer-free and I am not sure which one will fit me best. I know for a fact that I want to have a double mastectomy. For some women this decision is a hard one, but for me the shear thought of getting cancer in my other breast at a later date is something I cannot handle. I do not care if the odds are low; if they are taking one they might as well take the other. Less worry and stress later on in life! Now I know emotionally that may come back in bite me in the butt because maybe I will feel less feminine or more insecure, but I will constantly remind myself NOTHING is more feminine or secure than karate chopping cancer and being a survivor. The double mastectomy is an easy decision. It is the reconstruction decisions after where I struggle. Which path do I take? How long will the recovery be? How will I look? How will I feel? I said earlier I was prepared for the chemotherapy. I have learned a lot about the effects of chemotherapy from going through it but then it all ends. Everything goes back to normal. With my surgery the decisions I make and the process of going through it is permanent. I have to live with it. Am I ready for those decisions? Have I really thought through them as much as I can? The chemotherapy was tough and it is the word most people shutter at when they hear cancer but I am not sure I feel the same way. This surgery scares me more. After my December 12th appointment I have about a month of "time out" to regroup and restrategize for my surgery. During that time I get to spend it with the people I love in Kansas City. I am sure it will all come together.
An update on my current physical and emotional status:
I have completed 14 chemotherapy treatments (4 A/C and 10 Taxol). I feel pretty weak but extremely positive. I am still experiencing joint and back pains, extreme nose bleeds (2-3 times a day), neuropathy in the fingers, my fingernails are dead and trying to fall off (gross), bloating from the Taxol, dry eyes from the Taxol, hot flashes from the Lupron and the constant lingering metal taste in my mouth regardless of what I eat or drink (worst taste ever). The last 10 treatments were easier than the first 4 but the side effects do not go away between each one. It has become an everyday, every minute occurrence. I just deal with it. Last Friday I had a check-up with my doctor. She scheduled pre-operation scans for December 6th so I know how much my cancer has shrunk going into my surgery. While she was examining me I explained to her a sharp pain and discoloration I have experienced in the location of my mass. She inspected it and thinks it may be an infection from an old biopsy. She has put me on an intense dose of antibiotics for one week to see if it helps. If the pain and discoloration at the site are still present on Friday when I go back in I am supposed to let her know. Hopefully it is nothing serious.
Tuesday, December 3, 2013
Friday, October 25, 2013
I get by with a little help help from my friends...I am going to try with a little help from my friends
Week 17 is coming to a close and today is Chemo #9 of 16. Before I go into my play by play recap of the last few weeks I think it is only fitting to make you watch/listen to the song that summarizes this post. Take a moment and enjoy!
Since my last post at the beginning of this month my spirits have been high and so has my health. There was a scare the first few weeks of my Taxol that my Hematocrit levels were getting too low and I would have to really think about getting a blood transfusion but as of last Friday (cross my fingers nothing has changed in the last week) my numbers were going up into the "healthy" range. With Taxol my eating habits have gone back to normal which I am not sure if that is a good thing or a bad thing because I LOVE food so much. I have put on most of my weight that I lost with the A/C chemo but it is hard to know if that is just the water weight from the Taxol or me actually eating my way through the refrigerator. Either way it makes me feel good and happy. Another positive note that all my lady friends will be jealous of is I have not had to shave my legs in 3 weeks. The Taxol continues what the A/C chemo started and the rest of my body hair is falling out. There are pros and cons to this but I won't go into detail. I am still having serious hot flashes that are keeping my up on a regular basis and sadly punishing my students in my classroom because I have to keep my windows open all the time. It is like clock work. I will have a hot flash for ten minutes then be fine for about 20 minutes and then have another hot flash. My infusion nurse a few weeks ago told me the hot flashes are caused from the Lupron shot I am getting that is supposed to protect my eggs/ovaries but the side effect was only supposed to last 2 weeks not 4 weeks as it has. And I am screwed because I have to have another Lupron shot this week (every 4 weeks) so it will start full force all over again. It is a joke in the Science Department at my school. We call it cancerpause instead of menopause. Whenever I hear the word cancerpause it really just makes me chuckle because I picture cats with hospital face masks pawing at me. Weird visual I know but it gets me through this annoying side effect. My oncologist prescribed me some menopause medication this morning so I am hoping that is does the trick and disarms the cancerpause.The last side effect that is now in full force is the peripheral neuropathy. Everything I said before about it being bad was nothing compared to what I am experiencing now. I have lost complete feeling of my fingertips. Typing right now is actually proving to be quite difficult. It started a little over a week ago and just spread like wild fire to all my fingers. The sensation I feel all day every day is like when you smash your finger nail in a door and it is a numb/painful sensation. It is not fun at all. I am having trouble opening doors, food items, peeling oranges (I am on a orange kick right now), typing, and just really functioning normal in general. In fact two funny/mortifying examples of my neuropathy getting the best of me are as follows: Last week I was stamping my students' papers for completion with this awesome stamp I have (quotes things like "that warrants a fist pump") and I thought I had a good grip on the stamp but really was hardly holding it. As I pressed down on one student's paper the stamp flew out of my hand and rolled down his shirt. Luckily he was wearing a darker colored shirt, otherwise he would have had "that warrants a fist pump" all the way down his chest. I felt so bad! So bad! He was super sweet though and let me know it was no big deal as I was trying to explain to him why it had happened. The second time the neuropathy got the best of me is when I was walking my dogs and I thought I had a good grip on Newton's leash (my large weimaraner) when I didn't. Luckily I noticed shortly before he did that I wasn't actually holding his leash at all and I grabbed it avoiding a serious possibly dog fatal catastrophe. My doctor told me this side effect would happen and I have been taking my Glutamine powder with chocolate milk three times a day so it won't be permanent. Glutamine powder in chocolate milk makes me think of Ovaltine "Don't shoot your eye out" which is how I feel...scratch that...don't feel on a daily basis. Again I got to make jokes to make it worth it. Besides those two side effects, the continuous heartburn and the daily fatigue I feel amazing (that part isn't a joke).
Now to get to the point of the awesome music video at the beginning. The past few weeks have been extremely overwhelming. I mentioned this in my last blog but my mind is flooded with so many different emotions it is hard to decide which one I am actually projecting anymore. Sometimes I cry but I don't really know if I am crying because I was dealt a crappy hand or if I am happy because I know I am loved. Lately, however, the happy emotions seem to extremely outweigh the self pity emotions. About a month ago Eastlake High School (the school I teach at) started a fundraiser to help me with my medical bills and also promote awareness for breast cancer. At first the fundraiser started out small and was just the girls swim team selling t-shirts to their families and having a weekend car wash, but my swim team family is absolutely amazing and they just were not satisfied with stopping there. Some of my girls went door to door asking their neighbors to donate and the whole swim team started selling pink shirts to faculty and the rest of the student body. Pretty soon pink exploded all over the halls of my school and kids, parents and faculty were bringing me lunches and gifts to show me they loved me. The fundraiser became such a success that the Leadership class decided to have a pink out Friday with a pep assembly to promote breast cancer awareness and celebrate how amazing all the students and faculty are at supporting one of their own. Unfortunately the pep assembly was on a Friday and I was stuck in a hospital bed getting a transfusion but they sent me a video to show me how much they love me. Some of you may have seen it but it is worth watching again. Every day since I received this video whenever I am feeling down or alone I watch this video and it instantly fills me with warmth and happiness. It is a very powerful thing and I could not be happier being part of this community!
Another overwhelmingly happy moment that occurred the past few weeks was back home in Kansas City. A few friends of mine decided to hold a benefit concert, to again, help me pay for my medical expenses. They had live music, a silent auction, a pizza buffet, specialty drinks, and a raffle to come up with funds to support me. They hosted the benefit at a local bar run by a wonderful couple I went to high school with. I got the privilege to Face Time with my mom during the benefit and the outpouring amount of love and support was truly incredible. There were so many people there, some I haven't even seen in over a decade. As my sister was parading her phone around so I could say hello to everyone tears were streaming down my face. They were happy tears and sad tears because I wanted more than anything to be there. Again it is the big things like this that get me through each week and excited as I check off each and every chemo appointment. THANK YOU ALL SO MUCH! It is nice to have a little help from my friends...
This week I went back and read some of my old posts just as a reassurance to myself that I have come a long way. In the beginning posts I was still "healthy" or should I say not chemo infused and I was active and having some fun. I feel like since school/chemo started all the fun has been sucked out of me. I have not had the opportunity or the strength to go out and do the things I want to do. I live in an incredible city and the thought of walking two blocks to a restaurant frightens me. I am getting cabin fever sitting in my 500 square foot studio apartment each and everyday but I know once this is over I will probably be more active then I have ever been. A couple weeks ago my sister came in town and I wanted more than anything to show her the city (my mission is to convince anyone and everyone to move to Seattle). On Thursday and Friday of that week we stuck around the house and played Phase 10 (my favorite game) and watched movies. On Saturday, I decided I had this burst of energy and I wanted to get out of the house and show her the area. I knew I couldn't walk far so I decided to drive her and Daniel out to Woodinville to the Red Hook Brewery for some lunch, a brewery tour and some drinks (for them not me). We had an awesome time and a couple friends from my work actually came out and joined us which ended up turning into an all day event. It was a blast and I felt great the whole time! On Sunday, we headed to Fremont (Carly's next place of residence) to go to the Farmer's Market. Before I was diagnosed I worked at a restaurant/bar in Fremont and on Sunday's would always be so jealous of everyone who got to go to the market because I could see it but always had to work during it. We started the day going to lunch at my old place of business, which was nice because I got to say hello to everyone, followed by treasure searching at the Farmer's Market. Once we finished at the Farmer's Market we headed to Gas Works Park for some LARP (live action role playing) watching and incredible views. It was really fun and I think I convinced Carly just a little bit more to move to Seattle. At the end of the day, though, I was beyond exhausted and I think all the exertion I put into the week caught up with me. I ended up being couch confined the rest of the evening as Daniel and Carly explored a little more. So again, it goes back to the idea of how just being a little active scares the crap out of me.
Last update for this blog: today my oncologist told me I get to go home for Christmas. Daniel and I are hoping to come home December 20-26th (flights permitted). I am so excited to see all of you who have been following my journey and reached out to me when I was at my lowest. In the next few weeks my surgeon will be calling me to start looking into scheduling a time frame for my surgery. They project it will be within the first few weeks after the holidays. Time for me to start doing some research on my options.
P.S. Not sure if I said this already but I am totally going as Walter White for Halloween. It is only fitting! Daniel and I are hoping to go costume shopping this weekend.
Since my last post at the beginning of this month my spirits have been high and so has my health. There was a scare the first few weeks of my Taxol that my Hematocrit levels were getting too low and I would have to really think about getting a blood transfusion but as of last Friday (cross my fingers nothing has changed in the last week) my numbers were going up into the "healthy" range. With Taxol my eating habits have gone back to normal which I am not sure if that is a good thing or a bad thing because I LOVE food so much. I have put on most of my weight that I lost with the A/C chemo but it is hard to know if that is just the water weight from the Taxol or me actually eating my way through the refrigerator. Either way it makes me feel good and happy. Another positive note that all my lady friends will be jealous of is I have not had to shave my legs in 3 weeks. The Taxol continues what the A/C chemo started and the rest of my body hair is falling out. There are pros and cons to this but I won't go into detail. I am still having serious hot flashes that are keeping my up on a regular basis and sadly punishing my students in my classroom because I have to keep my windows open all the time. It is like clock work. I will have a hot flash for ten minutes then be fine for about 20 minutes and then have another hot flash. My infusion nurse a few weeks ago told me the hot flashes are caused from the Lupron shot I am getting that is supposed to protect my eggs/ovaries but the side effect was only supposed to last 2 weeks not 4 weeks as it has. And I am screwed because I have to have another Lupron shot this week (every 4 weeks) so it will start full force all over again. It is a joke in the Science Department at my school. We call it cancerpause instead of menopause. Whenever I hear the word cancerpause it really just makes me chuckle because I picture cats with hospital face masks pawing at me. Weird visual I know but it gets me through this annoying side effect. My oncologist prescribed me some menopause medication this morning so I am hoping that is does the trick and disarms the cancerpause.The last side effect that is now in full force is the peripheral neuropathy. Everything I said before about it being bad was nothing compared to what I am experiencing now. I have lost complete feeling of my fingertips. Typing right now is actually proving to be quite difficult. It started a little over a week ago and just spread like wild fire to all my fingers. The sensation I feel all day every day is like when you smash your finger nail in a door and it is a numb/painful sensation. It is not fun at all. I am having trouble opening doors, food items, peeling oranges (I am on a orange kick right now), typing, and just really functioning normal in general. In fact two funny/mortifying examples of my neuropathy getting the best of me are as follows: Last week I was stamping my students' papers for completion with this awesome stamp I have (quotes things like "that warrants a fist pump") and I thought I had a good grip on the stamp but really was hardly holding it. As I pressed down on one student's paper the stamp flew out of my hand and rolled down his shirt. Luckily he was wearing a darker colored shirt, otherwise he would have had "that warrants a fist pump" all the way down his chest. I felt so bad! So bad! He was super sweet though and let me know it was no big deal as I was trying to explain to him why it had happened. The second time the neuropathy got the best of me is when I was walking my dogs and I thought I had a good grip on Newton's leash (my large weimaraner) when I didn't. Luckily I noticed shortly before he did that I wasn't actually holding his leash at all and I grabbed it avoiding a serious possibly dog fatal catastrophe. My doctor told me this side effect would happen and I have been taking my Glutamine powder with chocolate milk three times a day so it won't be permanent. Glutamine powder in chocolate milk makes me think of Ovaltine "Don't shoot your eye out" which is how I feel...scratch that...don't feel on a daily basis. Again I got to make jokes to make it worth it. Besides those two side effects, the continuous heartburn and the daily fatigue I feel amazing (that part isn't a joke).
Now to get to the point of the awesome music video at the beginning. The past few weeks have been extremely overwhelming. I mentioned this in my last blog but my mind is flooded with so many different emotions it is hard to decide which one I am actually projecting anymore. Sometimes I cry but I don't really know if I am crying because I was dealt a crappy hand or if I am happy because I know I am loved. Lately, however, the happy emotions seem to extremely outweigh the self pity emotions. About a month ago Eastlake High School (the school I teach at) started a fundraiser to help me with my medical bills and also promote awareness for breast cancer. At first the fundraiser started out small and was just the girls swim team selling t-shirts to their families and having a weekend car wash, but my swim team family is absolutely amazing and they just were not satisfied with stopping there. Some of my girls went door to door asking their neighbors to donate and the whole swim team started selling pink shirts to faculty and the rest of the student body. Pretty soon pink exploded all over the halls of my school and kids, parents and faculty were bringing me lunches and gifts to show me they loved me. The fundraiser became such a success that the Leadership class decided to have a pink out Friday with a pep assembly to promote breast cancer awareness and celebrate how amazing all the students and faculty are at supporting one of their own. Unfortunately the pep assembly was on a Friday and I was stuck in a hospital bed getting a transfusion but they sent me a video to show me how much they love me. Some of you may have seen it but it is worth watching again. Every day since I received this video whenever I am feeling down or alone I watch this video and it instantly fills me with warmth and happiness. It is a very powerful thing and I could not be happier being part of this community!
This week I went back and read some of my old posts just as a reassurance to myself that I have come a long way. In the beginning posts I was still "healthy" or should I say not chemo infused and I was active and having some fun. I feel like since school/chemo started all the fun has been sucked out of me. I have not had the opportunity or the strength to go out and do the things I want to do. I live in an incredible city and the thought of walking two blocks to a restaurant frightens me. I am getting cabin fever sitting in my 500 square foot studio apartment each and everyday but I know once this is over I will probably be more active then I have ever been. A couple weeks ago my sister came in town and I wanted more than anything to show her the city (my mission is to convince anyone and everyone to move to Seattle). On Thursday and Friday of that week we stuck around the house and played Phase 10 (my favorite game) and watched movies. On Saturday, I decided I had this burst of energy and I wanted to get out of the house and show her the area. I knew I couldn't walk far so I decided to drive her and Daniel out to Woodinville to the Red Hook Brewery for some lunch, a brewery tour and some drinks (for them not me). We had an awesome time and a couple friends from my work actually came out and joined us which ended up turning into an all day event. It was a blast and I felt great the whole time! On Sunday, we headed to Fremont (Carly's next place of residence) to go to the Farmer's Market. Before I was diagnosed I worked at a restaurant/bar in Fremont and on Sunday's would always be so jealous of everyone who got to go to the market because I could see it but always had to work during it. We started the day going to lunch at my old place of business, which was nice because I got to say hello to everyone, followed by treasure searching at the Farmer's Market. Once we finished at the Farmer's Market we headed to Gas Works Park for some LARP (live action role playing) watching and incredible views. It was really fun and I think I convinced Carly just a little bit more to move to Seattle. At the end of the day, though, I was beyond exhausted and I think all the exertion I put into the week caught up with me. I ended up being couch confined the rest of the evening as Daniel and Carly explored a little more. So again, it goes back to the idea of how just being a little active scares the crap out of me.
Last update for this blog: today my oncologist told me I get to go home for Christmas. Daniel and I are hoping to come home December 20-26th (flights permitted). I am so excited to see all of you who have been following my journey and reached out to me when I was at my lowest. In the next few weeks my surgeon will be calling me to start looking into scheduling a time frame for my surgery. They project it will be within the first few weeks after the holidays. Time for me to start doing some research on my options.
P.S. Not sure if I said this already but I am totally going as Walter White for Halloween. It is only fitting! Daniel and I are hoping to go costume shopping this weekend.
Tuesday, October 1, 2013
Full time cancer and full time teaching don't mix
Yet again it has been a while since my last post. Between school starting, coaching swimming and battling cancer I feel like I have three full time jobs. Needless to say when I do have a moment to breathe I am trying to play catch up on what I missed the day before. That or I am sleeping. But for those who have been worried I am alive and working on the getting well for the most part. The past month has been a whirlwind of side effects and sicknesses. This is the first week I feel like myself again (or as much as I can with chemo pumping through me). My last blog I left off talking about how my biggest challenge coming up would be surviving the first day of school. Well I am here to tell you that was a success. However, a very short lived success. The beginning of the school year is always one giant cloud of germs and dust as most teachers will attest. Students are coming in from the outside world bringing in a variety of different germs combined with the dust that settled in my classroom over the summer and Seattle summer turning to rain. I knew I would eventually be doomed in the wellness department it was just a matter of when. Well after surviving the first week of school (yet getting sicker by the day) I ended up having to go to the hospital on that Saturday. I woke up Saturday, September 6th feeling terrible. I had terrible sinus pressure and a cough that took my breath away. I took my temperature throughout the day and slowly watched it creep up to 101.4 Farenheit. Now I know that seems very high to wait that long to go to a doctor but according to my chemotherapy information there is not much they can do until my fever spikes above 101 Farenheit. Once it reaches this temperature it is considered an infection and can be life threatening. Silly huh? Why wait till that point? Any way once my fever spiked I called SCCA and let them know my symptoms and temperature. They immediately referred me to University of Washington Hospital Emergency Room. This put a huge damper on my plans. I had hoped to go to a concert that night that Daniel and I were looking forward to. Damn chemo! Once I got to the hospital they admitted me, took x-ray scans of my chest and started me on a slew of antibiotics. One thing I hate about hospitals is they don't ever consider how hungry you are when you are there. That feeling (because I did not have time to eat dinner or eat at all that day) mixed with all the antibiotics made me feel worse than when I walked into the ER. After I got my scans back they determined I had pneumonia. To be safe they admitted me for the night in the cancer ward to pump me full of more antibiotics; none however, made me feel any better. After I was admitted I was assigned a resident doctor to oversee me through the night. She checked all my blood counts and sheepishly decided that I needed a blood transfusion in the morning. This all seemed ridiculous to me. How can a sinus infection result in all this? I was hesitant but I assumed this nervous resident knew more than I did and if she thought this was the best solution than so be it. After a sleepless night in the hospital and some vomiting from the antibiotics an attending doctor came in and decided I did not need the transfusion after all. My blood counts were low but I had no other major symptoms that made them assume I needed a tranfusion. In fact, he decided I could be discharged that morning, given oral antibiotics to take home and be on my way. This overnight vacation seemed like a hefty bill for really no solution to my pain. I still left feeling just as bad as I went in. The only positive was I did not have a fever any more.
After my awesome visit to the hospital I had a week till my next chemotherapy appointment. Let me restate that...My LAST Red Devil Chemo appointment. I still felt terrible but I wanted to get it over with. I some how made it through the week and my blood levels were high enough so that Friday it was a successful transfusion. My doctor also prescribed me a more potent antibiotic hoping it would clear my infection/pneumonia faster since the antibiotics the hospital gave me weren't cutting it. These antibiotics were that week's downfall!
That week after my last dense dose chemo was the worst week of all this adventure. Not only was the side effects of the chemo in full force but so was the side effects of the antibiotics mixed with my cough. So that week I suffered severe diarrhea, dehydration, and manic coughing on top of all the fatigue and nausea. I was so weak I thought for sure by Wednesday I would pass out driving home from work. I couldn't make it through the day without breaking out in tears in front of my coworkers and students. It was terrible but after attempting to make it through the day on Wednesday at school I left early and went straight to SCCA. There I spoke with my nurse, got another chest x-ray and they prescribed me a new cough medicine. That night I went home and slept for 3 days straight. I had hoped through all of this I wouldn't miss school for random sick days because if I did I would feel bad for my students but my body told me I needed to rest NOW so I did and boy did it help!
Flash forward a week later to this past Friday, I know this is a huge time lapse, but I started my low dose Taxol chemotherapy. This chemotherapy will be every Friday for the next twelve weeks. Yay (vomit)! I no longer have to get a Nuelasta shot on Saturdays to boost my white blood cell count (yay no more aches and pains in my bones) but this does mean I have to be extra cautious of my health. I am praying I stay healthy throughout this fall so I do not have to miss a chemo appointment. Right now I am scheduled to end chemo on December 13th. If I miss one appointment at all it will bump into Christmas break and I may not get to go home. Cross my fingers this doesn't happen. When I went in on Friday for my chemo appointment it went the same as all the others. I first had a blood draw (my counts were high enough to proceed), followed by a visit with my oncologist and then my transfusion. My doctor told me my mass is getting smaller. I can still feel it deep in my tissue but I really have to dig for it. After she did my physical exam she discussed all the side effects Taxol has. The effects are less severe than the A/C (Red Devil) but over time (12 consecutive weeks) can get worse. They are as follows: fatigue (but not as bad- I was up and moving on Monday which is unusual), extreme heartburn (still one of the worst side effects), constipation (terrible- don't EVER take pooping for granted) :) hot flashes (these are really bad right now and I haven't slept in days), and last but not least peripheral neuropathy. Peripheral neuropathy is bad. My oncologist said that with Taxol I could lose feeling in my hands and feet and if I do not monitor it, and it will become permanent. She told me in order to help prevent complete loss of feeling in my hands and feet it I needed to buy Glutamine powder and take it three times a day in yogurt or hot tea. Yesterday I went to a supplement store purchased this powder and started taking it today. It is quite disgusting but beats losing feeling in my extremities. I got my armor on and I am still fighting strong.
So this sums up the past month. Now to discuss how I feel emotionally. This month has been the hardest yet. With being sick, missing family, getting more and more medical bills I am overwhelmed with emotions. Yet I keep pushing. I keep telling myself it could be worse. I keep telling myself so many people are looking up to me to put on a brave face and push through, and I have. I know I have the right to cry, and believe me I have, but something inside of me tells me it is not worth it. I am alive. I have the most AMAZING friends and family in my life that have kept me going. I feel stronger every day because of them. It kills me inside that I will never be able to repay these people who have had such an impact on me the last few months. It is another thing I will never again take for granted. You have reignited my flame (thanks Sarah for the reference). This feeling alone is overwhelming, but a happy overwhelming. I spoke with my mother today about how I wish I could pay back everyone who has been so incredibly amazing to me in this time and she told me nobody expects pay back but I can always pay it forward. I want more than anything to pay it forward and one day I will. This experience has changed me more than I really think I can comprehend. It brings me to tears thinking about how all the positives have truly outweighed the negatives. I am hundreds of miles away from my family but the love I feel from everyone makes me feel like I am right at home and not at one moment alone in this fight. Friends I lost touch with, family I haven't seen in forever, or even met before are reaching out to keep me positive. Many people have said I have changed them for the better but they have no idea how much they have changed me. Thank you all so much!
I have eleven weeks left of chemotherapy and I am assuming (let's hope I am right) that it can only get easier from there. I mean a new set of boobs (ha ha) and a potential tummy tuck to make them beats heartburn, nausea, fatigue, constipation and just overall feeling crappy right? Phase one of this year long job is almost over with. I can see the light at the end of the tunnel and I feel like I cannot run fast enough to get there, but I promise myself and my family I will be sprinting and karate chopping the whole way. I value my life and I am strong. Cancer picked the wrong person. Anyone who knows me knows I am a work-a-holic so three intense jobs, like I have right now, is a breeze.
P.S. Fun Fact: My nurse told me the other day my nose will probably run on a regular basis because since I have lost most of my body hair that includes nose hair too. Weird huh? Because I have no hair in my nose I can't stop the snot from running. Haha I found it fascinating. Also below is a picture of my new bald head. All I have now is baby hair that doesn't fall out because of its follicles.
After my awesome visit to the hospital I had a week till my next chemotherapy appointment. Let me restate that...My LAST Red Devil Chemo appointment. I still felt terrible but I wanted to get it over with. I some how made it through the week and my blood levels were high enough so that Friday it was a successful transfusion. My doctor also prescribed me a more potent antibiotic hoping it would clear my infection/pneumonia faster since the antibiotics the hospital gave me weren't cutting it. These antibiotics were that week's downfall!
That week after my last dense dose chemo was the worst week of all this adventure. Not only was the side effects of the chemo in full force but so was the side effects of the antibiotics mixed with my cough. So that week I suffered severe diarrhea, dehydration, and manic coughing on top of all the fatigue and nausea. I was so weak I thought for sure by Wednesday I would pass out driving home from work. I couldn't make it through the day without breaking out in tears in front of my coworkers and students. It was terrible but after attempting to make it through the day on Wednesday at school I left early and went straight to SCCA. There I spoke with my nurse, got another chest x-ray and they prescribed me a new cough medicine. That night I went home and slept for 3 days straight. I had hoped through all of this I wouldn't miss school for random sick days because if I did I would feel bad for my students but my body told me I needed to rest NOW so I did and boy did it help!
Flash forward a week later to this past Friday, I know this is a huge time lapse, but I started my low dose Taxol chemotherapy. This chemotherapy will be every Friday for the next twelve weeks. Yay (vomit)! I no longer have to get a Nuelasta shot on Saturdays to boost my white blood cell count (yay no more aches and pains in my bones) but this does mean I have to be extra cautious of my health. I am praying I stay healthy throughout this fall so I do not have to miss a chemo appointment. Right now I am scheduled to end chemo on December 13th. If I miss one appointment at all it will bump into Christmas break and I may not get to go home. Cross my fingers this doesn't happen. When I went in on Friday for my chemo appointment it went the same as all the others. I first had a blood draw (my counts were high enough to proceed), followed by a visit with my oncologist and then my transfusion. My doctor told me my mass is getting smaller. I can still feel it deep in my tissue but I really have to dig for it. After she did my physical exam she discussed all the side effects Taxol has. The effects are less severe than the A/C (Red Devil) but over time (12 consecutive weeks) can get worse. They are as follows: fatigue (but not as bad- I was up and moving on Monday which is unusual), extreme heartburn (still one of the worst side effects), constipation (terrible- don't EVER take pooping for granted) :) hot flashes (these are really bad right now and I haven't slept in days), and last but not least peripheral neuropathy. Peripheral neuropathy is bad. My oncologist said that with Taxol I could lose feeling in my hands and feet and if I do not monitor it, and it will become permanent. She told me in order to help prevent complete loss of feeling in my hands and feet it I needed to buy Glutamine powder and take it three times a day in yogurt or hot tea. Yesterday I went to a supplement store purchased this powder and started taking it today. It is quite disgusting but beats losing feeling in my extremities. I got my armor on and I am still fighting strong.
So this sums up the past month. Now to discuss how I feel emotionally. This month has been the hardest yet. With being sick, missing family, getting more and more medical bills I am overwhelmed with emotions. Yet I keep pushing. I keep telling myself it could be worse. I keep telling myself so many people are looking up to me to put on a brave face and push through, and I have. I know I have the right to cry, and believe me I have, but something inside of me tells me it is not worth it. I am alive. I have the most AMAZING friends and family in my life that have kept me going. I feel stronger every day because of them. It kills me inside that I will never be able to repay these people who have had such an impact on me the last few months. It is another thing I will never again take for granted. You have reignited my flame (thanks Sarah for the reference). This feeling alone is overwhelming, but a happy overwhelming. I spoke with my mother today about how I wish I could pay back everyone who has been so incredibly amazing to me in this time and she told me nobody expects pay back but I can always pay it forward. I want more than anything to pay it forward and one day I will. This experience has changed me more than I really think I can comprehend. It brings me to tears thinking about how all the positives have truly outweighed the negatives. I am hundreds of miles away from my family but the love I feel from everyone makes me feel like I am right at home and not at one moment alone in this fight. Friends I lost touch with, family I haven't seen in forever, or even met before are reaching out to keep me positive. Many people have said I have changed them for the better but they have no idea how much they have changed me. Thank you all so much!
I have eleven weeks left of chemotherapy and I am assuming (let's hope I am right) that it can only get easier from there. I mean a new set of boobs (ha ha) and a potential tummy tuck to make them beats heartburn, nausea, fatigue, constipation and just overall feeling crappy right? Phase one of this year long job is almost over with. I can see the light at the end of the tunnel and I feel like I cannot run fast enough to get there, but I promise myself and my family I will be sprinting and karate chopping the whole way. I value my life and I am strong. Cancer picked the wrong person. Anyone who knows me knows I am a work-a-holic so three intense jobs, like I have right now, is a breeze.
P.S. Fun Fact: My nurse told me the other day my nose will probably run on a regular basis because since I have lost most of my body hair that includes nose hair too. Weird huh? Because I have no hair in my nose I can't stop the snot from running. Haha I found it fascinating. Also below is a picture of my new bald head. All I have now is baby hair that doesn't fall out because of its follicles.
Wednesday, August 28, 2013
I may just be the cowardly lion
Sorry for the long hiatus but between barely being able to lift my finger for a week after chemo to starting school meetings this week and Comcast being the evil dictator I haven't been able to find the time to get a working computer to write my entry. So now I sit here after school about to head to a benefits meeting (to hopefully change my insurance) writing all the emotions I have had bottled up in my head for the past few weeks. I am not going to go into lengthy detail about each and every day from the past two week but I do want to explain emotionally and physically how I have felt these weeks. I started this blog mainly to inform my friends and family about my progress and educate them on the "behind the scenes" of cancer and all the lovely baggage it comes with but as I have delved into this blog more and more I am starting to think of it more as therapeutic and also a nice reflection for me to look back on in a year and hopefully laugh about it all. I mean really...I have the WORST luck!
As most of you know my second round of chemotherapy fell on my 28th birthday this year. As I get older birthdays seems to be less relevant and more depressing. Who wants to celebrate getting old and wrinkly? Not me. So I didn't mind so much when this round fell on this special day. On that day Daniel and a great new friend of mine Alicia came with me to my appointments. First, as usual, was the blood draw. My white blood cell count was excellent which means my chemo was a go for the day. Second I went to my oncologist appointment. When I arrived I was notified that my oncologist fell the day before and broke her arm so she would not be my doctor that day but a lovely British lady would. I was a bit nervous because I love my doctor and feel comfortable with her and trust her. I did not know this other doctor and felt weird letting her examine me. (Disclaimer: For this year I am treating my body as a science experiment- I feel like every doctor in the Seattle area has explored and researched it- Numb is what I have come to feel). When I got into the patient room I was immediately welcomed with a giant hug and a tearful "Happy Birthday" from this doctor I had never met. She was amazing and so so sweet. It just reaffirmed that I am getting the best and most involved care I could possibly get. After the hug and questions she examined my mass. Before I started this whole process my tumor was 9 cm in length. This may not seem like a large size but I could physically feel it through my skin and from the outside it felt like the size of a golf ball. After my first round of chemotherapy my tumor had shrunk 2cm. This is huge! I no longer have discomfort nor can I feel the tumor through my skin without really looking for it. It has given me a positive comfort knowing the chemo is actually doing something good and not just rotting my insides. After my check-up with my oncologist I went upstairs for my infusion. During my infusion I conned Daniel and Alicia into playing a full game of Phase 10, which thanks to Marley Sugar is my new favorite card game. Playing cards and eating an obscene amount of animal crackers distracted me from the 4 hour infusion. Towards the end of the chemo infusion I started to get a terrible headache but it was quickly squashed by some Tylenol from the gift shop downstairs. After chemo was over I felt well enough to indulge in some burgers at Lunchbox Laboratory as a birthday dinner! It all was perfect timing.
As soon as lunch was over and we headed home the prechemo drugs started wearing off fast. I immediately became helpless due to the amount of pain I felt all over. Common side effects I felt this time around include extremely fast hair loss, crippling heartburn, a couple days of dry heaving (still have yet to vomit), extreme exhaustion (I slept for four days straight), trouble breathing, body cramps, constipation followed by diarrhea (sorry I know its gross), and the worst was the neuropathy. Neuropathy is nerve damage which causes tingling and cold sensations usually in the extremities. I had the awful privilege of getting it in my head. This cold tingling sensation has caused dreadful headaches and mind-numbing earaches. It is so bad I have to wear a beanie hat around the house all day, I can no longer sleep with a fan on and I have to sleep with a pillow over my head with pressure on it to make to pain less in order to sleep. I am hoping this Friday when I go in for Round 3 I can do something more to prevent or help it. All of these side effects are really taking a toll on my physical health. As I sit here I currently have some kind of cold I have contracted after only being back to school (with no kids yet) for three days. Ugh it is going to be a long year! One last thing on the side effects: As soon as I did my second round of chemo, as I said earlier, my hair started to fall out in massive chunks. I couldn't even lay down on my pillow without sitting up and it looked like something sheaded all its hair. So invited my friend Patricia over to shave my head. I was incredibly nervous but her and Daniel were very comforting and actually it did not look as bad as I thought it would. Below is a picture of me with my head shaved and me in my new wig. My wig is fun because no one recognizes me but it is a bit itchy at times. Even though I do not look half bad with a shaved head it is still falling out and will continue to till I am completely bald, but now when it falls out I can blame the hair on my dog Newton instead of knowing that it is mine. I figure it is less traumatic that way.
Last thing I want to discuss that has played the heaviest on me the past two weeks is my emotional well-being. When I found out I had cancer I cried for a few hours and then told myself to suck it up and deal with it and since then I haven't cried. I figure I have better odds than a lot of people. When I walk into SCCA and see old people and children who have a heck of a lot more to complain about it gives me strength I never thought I had in me. It is the saddest thing to see and for that I know I have to be brave. And I have. Until this past week. This last round of chemo has really taken an emotional toll on me. I think it is just the thought of knowing I don't have control over my body anymore. Even with all the preventive care in my handy side effects book I can't control them all. It leaves me feeling weak and powerless. Anyone who knows me knows I like to take charge. I like to be in control of my own destiny and my own pain really. Also I am a huge wimp when it comes to being sick. I keep thinking "I've only done 2 rounds and I have 14 more rounds or 3 months of feeling like this!" Excuse my language but that scares the shit out of me. I don't want to have to rely on other people. I don't want to battle heartburn or exhaustion or neuropathy. I want control. I hate the chemo more than I hate the cancer. At least when I had cancer I could not feel it. I know that is stupid to say and I really do not mean it but man this isn't emotionally what I thought would happen. I can handle the pain I assume because it is more of an annoyance then anything else but the loss of control is challenging. This is my rant for this week. I will suck it up and I will get through this. It is just a really bad job with a emotionally abusive boss. But I will get through it.
This week I started my meetings at school. I had to stand up in front of my whole school (mind you half of it still doesn't know who I am) and tell them about my alien disease. That took guts, that took courage I did not think I had in me. It is the little steps, the little accomplishments that are getting me through this. I know it won't be easy but I still feel like I can, not just will, handle this with confidence and courage. Friday I have my 3rd round of chemo. Three down...13 more to go! I will end it all just in time to make it home for an amazing Christmas with the family. Next week will be my biggest challenge...telling my students, their parents and getting through the first week of school on the chemo week where I feel the absolute worst. If I can conquer that I KNOW I can conquer anything! Wish me luck!
As most of you know my second round of chemotherapy fell on my 28th birthday this year. As I get older birthdays seems to be less relevant and more depressing. Who wants to celebrate getting old and wrinkly? Not me. So I didn't mind so much when this round fell on this special day. On that day Daniel and a great new friend of mine Alicia came with me to my appointments. First, as usual, was the blood draw. My white blood cell count was excellent which means my chemo was a go for the day. Second I went to my oncologist appointment. When I arrived I was notified that my oncologist fell the day before and broke her arm so she would not be my doctor that day but a lovely British lady would. I was a bit nervous because I love my doctor and feel comfortable with her and trust her. I did not know this other doctor and felt weird letting her examine me. (Disclaimer: For this year I am treating my body as a science experiment- I feel like every doctor in the Seattle area has explored and researched it- Numb is what I have come to feel). When I got into the patient room I was immediately welcomed with a giant hug and a tearful "Happy Birthday" from this doctor I had never met. She was amazing and so so sweet. It just reaffirmed that I am getting the best and most involved care I could possibly get. After the hug and questions she examined my mass. Before I started this whole process my tumor was 9 cm in length. This may not seem like a large size but I could physically feel it through my skin and from the outside it felt like the size of a golf ball. After my first round of chemotherapy my tumor had shrunk 2cm. This is huge! I no longer have discomfort nor can I feel the tumor through my skin without really looking for it. It has given me a positive comfort knowing the chemo is actually doing something good and not just rotting my insides. After my check-up with my oncologist I went upstairs for my infusion. During my infusion I conned Daniel and Alicia into playing a full game of Phase 10, which thanks to Marley Sugar is my new favorite card game. Playing cards and eating an obscene amount of animal crackers distracted me from the 4 hour infusion. Towards the end of the chemo infusion I started to get a terrible headache but it was quickly squashed by some Tylenol from the gift shop downstairs. After chemo was over I felt well enough to indulge in some burgers at Lunchbox Laboratory as a birthday dinner! It all was perfect timing.
As soon as lunch was over and we headed home the prechemo drugs started wearing off fast. I immediately became helpless due to the amount of pain I felt all over. Common side effects I felt this time around include extremely fast hair loss, crippling heartburn, a couple days of dry heaving (still have yet to vomit), extreme exhaustion (I slept for four days straight), trouble breathing, body cramps, constipation followed by diarrhea (sorry I know its gross), and the worst was the neuropathy. Neuropathy is nerve damage which causes tingling and cold sensations usually in the extremities. I had the awful privilege of getting it in my head. This cold tingling sensation has caused dreadful headaches and mind-numbing earaches. It is so bad I have to wear a beanie hat around the house all day, I can no longer sleep with a fan on and I have to sleep with a pillow over my head with pressure on it to make to pain less in order to sleep. I am hoping this Friday when I go in for Round 3 I can do something more to prevent or help it. All of these side effects are really taking a toll on my physical health. As I sit here I currently have some kind of cold I have contracted after only being back to school (with no kids yet) for three days. Ugh it is going to be a long year! One last thing on the side effects: As soon as I did my second round of chemo, as I said earlier, my hair started to fall out in massive chunks. I couldn't even lay down on my pillow without sitting up and it looked like something sheaded all its hair. So invited my friend Patricia over to shave my head. I was incredibly nervous but her and Daniel were very comforting and actually it did not look as bad as I thought it would. Below is a picture of me with my head shaved and me in my new wig. My wig is fun because no one recognizes me but it is a bit itchy at times. Even though I do not look half bad with a shaved head it is still falling out and will continue to till I am completely bald, but now when it falls out I can blame the hair on my dog Newton instead of knowing that it is mine. I figure it is less traumatic that way.
This week I started my meetings at school. I had to stand up in front of my whole school (mind you half of it still doesn't know who I am) and tell them about my alien disease. That took guts, that took courage I did not think I had in me. It is the little steps, the little accomplishments that are getting me through this. I know it won't be easy but I still feel like I can, not just will, handle this with confidence and courage. Friday I have my 3rd round of chemo. Three down...13 more to go! I will end it all just in time to make it home for an amazing Christmas with the family. Next week will be my biggest challenge...telling my students, their parents and getting through the first week of school on the chemo week where I feel the absolute worst. If I can conquer that I KNOW I can conquer anything! Wish me luck!
Monday, August 12, 2013
Don't judge a book by its cover
Numerous times in my life I have gone to bookstores and roamed the isles trying to pinpoint exactly what book I wanted to read. I am not a big fan of reading books that are recommended to me and I am really picky when it comes to what type of books I read. I tend to get bored before I give it a chance. None of this is relevant to my point but when I go to purchase a book I always go against the saying and purchase random books based on how "cool" the cover is. Looking around my room I can see about ten books right off the bat that I have yet to open that I purchased because I liked the title, the cover, or the summary on the back cover. Good job graphic designers! The point I am trying to make is I never really know what is going on inside the book because I don't open it and explore and that is a lot like how I have felt the past two weeks. I may have a decent exterior (no hair loss yet) but I know my insides are telling a whole different dysfunctional story. Sorry it is long but it is overdue.
The Wednesday before my first round of chemo I had my IVF surgery. I went in at 7:30 a.m. and was out and headed home by 10:00 a.m. The doctors collected 12 mature eggs for freezing which I was told is a good number. Apparently not all eggs make it through freezing and then only some work later on so the larger the amount the better your odds of a baby. When I woke up from the anesthesia I felt bloated, crampy and extremely tired. Daniel took me home, I took some pain medicine and we slept all day. It was a quick and easy surgery compared to the constant poking I endured for two weeks.
The next day was the day I was looking forward to that whole week. My mom flew in town from KC to be here with us for a week through my first chemo infusion. We picked her up around noon at the airport and then we had to head to an appointment to get my thyroid ultrasound because of the nodules they found on my CT scan. When we arrived at SCCA they got me in fast and the ultrasound technician was really good. Much more skilled than all the others who have trolled around my body. He got me in and out but did not elaborate on my results at that time. I did however find out later in the week that my results came back negative for any unusual masses. Yay no cancer in the thyroid! Oh, another positive note from this week is I also got back my genetics test results and they were also all NEGATIVE for any cancer genes. That is really good news because it lowers the percentage of me getting cancer again but it still leaves the question open as to why I got this alien disease in the first place. Maybe when I am old and donate my body to science they will one day find out.
All right, well now going back to my book idea from the beginning. The week leading up to my chemo had been pleasant. I won't get in to extreme detail but I enjoyed company from out of town and got to go to a music festival. I felt fine, I look fine, I was emotionally in a great place. The "cover" of my book was in great condition. That all changed that Friday when I went in for my first chemo infusion. I started the day at 10:15 a.m. getting a blood draw and my chemo port accessed and set up for the day. They have to do a blood draw before each infusion to make sure my white blood cell count is high enough to proceed. This week was just a baseline since it was my first infusion. After the blood draw I headed up to see my oncologist. She measured my cancerous mass (still 9cm) and talked with me about what was going to happen during the infusion. Its funny when the doctors ask if you have any questions or concerns and you just stare at them blankly. That is what I do at least. Of course I have questions and concerns but at that moment they flee my mind or just make me look like a massive wimp if I ask so I just keep my mouth shut. After meeting with my doctor we grabbed a quick lunch and Daniel, my mom and I headed up to the infusion center. The infusion center reminds me of a city. There are tons of mini rooms all over the place with their own "address" and a mini-market (kitchen) in the middle of it that has everything you could ever need. Seriously every kind of food. It was amazing, and all free. I snacked on string cheese like a queen. Once I was settled in my room they hooked me up to the pre-chemo drugs. These drugs helped me handle the nausea, and heartburn that the chemo would cause. The pre-chemo infusion took about an hour through an IV in my port. They gave me enough medicine to supposedly last me a few days (that was not the case). After the pre-chemo drugs were finished they hooked me up first to the "red devil" chemotherapy and that took about an hour to feed through my line. At that point I felt fine, I looked fine, I was still a book someone would want to pick up and read. After the "red devil" the hooked me up to the second drug. It was a clear fluid and took about two hours to infuse into my line. This drug brought me down fast. Immediately I had a headache beyond any headache I have ever felt before. The pain was intense all over my head and they couldn't give me any medication without my oncologist's consent (she was busy so that meant never). Once the infusion was over more than anything I wanted to go home. I felt this uncomfortable feeling that I no longer had any control of my body and this situation. I think the headache mixed with this unsettling feeling set me up for the terrible pain I felt that evening. On our way out of SCCA we stopped at the pharmacy and picked up my anti-nausea and anti-heartburn drugs and quickly headed home were we buckled down to ride out the storm of chemo.
After the infusion the first few days were intense! Wednesday was the first day I was up and moving at a constant pace which was nice because I got to visit some amazing relatives I had never met that live here in the Seattle area. Some side effects I have had the joy of enduring include: extreme exhaustion- cannot walk around the block without being winded, SEVERE heartburn- to the point of shooting pain constantly in my chest and back every time I breathe- all day, the random bouts of nausea (although I have yet to puke), the bone and joint aches that have left me paralyzed in the fetal position, constant pain at the site of my cancer mass, extremely dry mouth and eyes, sores in the mouth and my gastrointestinal tract flipping sides in deciding how it wants to digest my food. I never knew this till all this happened but chemotherapy kills all cells that are quick dividing. My cancer cells are quick dividing so the chemo will work really well in killing those cells off. However, the human mouth and the gastrointestinal system are also quick in manufacturing and turning over new cells. Therefore all the good and bad bacteria in my body is attacking these sights and causing pain, infection and discomfort. There are tricks to minimizing these affects but they are just as bad as the cause. I mean who really wants to wash their mouth with salt water after EVERY food or drink you ingest?
All of these side effects make me wonder what is going on inside of me. I have put on a brave face for the past month since my diagnosis but feeling all these symptoms messes with my head. I picture a massive battle inside me and each pain I feel is an explosion or gun fight leaving a brutal scene behind (hopefully killing the bad guys). I am a book with a great exterior (again I still have my hair) but my insides are tell a completely different story. I am assuming once I invest more time into my own story the plot will be more to my liking but right now this doesn't seem to be what I signed up for or what "I bought the book for." I knew it was going to be hard, in fact, I thought it would be much much worse. Knock on wood. I think that is what scares me; the fear of the unknown. The fear that each time I infuse I will feel a little bit different, a little bit more defeated knowing my insides are not at all what my outsides show. That is a terrible mind trick. Does that make me a great graphic designer.
This is a shitty job! One infusion down only 15 more to go (hopefully only 15). Stay tuned for this Friday. I am hoping to enjoy my week of good health with some early birthday adventures with friends. Maybe I will get a room this time for my chemo since it is my birthday! Also I got a wig this week but will display pictures of that once my hair falls out. Thank you again to everyone who has sent their love my way. I have received amazing cards, calls, donations and gifts from so many of you. It is actually really nice going down to check my mail and the letters and cards outweigh the medical EOBs and bills that keep pouring in.
The Wednesday before my first round of chemo I had my IVF surgery. I went in at 7:30 a.m. and was out and headed home by 10:00 a.m. The doctors collected 12 mature eggs for freezing which I was told is a good number. Apparently not all eggs make it through freezing and then only some work later on so the larger the amount the better your odds of a baby. When I woke up from the anesthesia I felt bloated, crampy and extremely tired. Daniel took me home, I took some pain medicine and we slept all day. It was a quick and easy surgery compared to the constant poking I endured for two weeks.
The next day was the day I was looking forward to that whole week. My mom flew in town from KC to be here with us for a week through my first chemo infusion. We picked her up around noon at the airport and then we had to head to an appointment to get my thyroid ultrasound because of the nodules they found on my CT scan. When we arrived at SCCA they got me in fast and the ultrasound technician was really good. Much more skilled than all the others who have trolled around my body. He got me in and out but did not elaborate on my results at that time. I did however find out later in the week that my results came back negative for any unusual masses. Yay no cancer in the thyroid! Oh, another positive note from this week is I also got back my genetics test results and they were also all NEGATIVE for any cancer genes. That is really good news because it lowers the percentage of me getting cancer again but it still leaves the question open as to why I got this alien disease in the first place. Maybe when I am old and donate my body to science they will one day find out.
All right, well now going back to my book idea from the beginning. The week leading up to my chemo had been pleasant. I won't get in to extreme detail but I enjoyed company from out of town and got to go to a music festival. I felt fine, I look fine, I was emotionally in a great place. The "cover" of my book was in great condition. That all changed that Friday when I went in for my first chemo infusion. I started the day at 10:15 a.m. getting a blood draw and my chemo port accessed and set up for the day. They have to do a blood draw before each infusion to make sure my white blood cell count is high enough to proceed. This week was just a baseline since it was my first infusion. After the blood draw I headed up to see my oncologist. She measured my cancerous mass (still 9cm) and talked with me about what was going to happen during the infusion. Its funny when the doctors ask if you have any questions or concerns and you just stare at them blankly. That is what I do at least. Of course I have questions and concerns but at that moment they flee my mind or just make me look like a massive wimp if I ask so I just keep my mouth shut. After meeting with my doctor we grabbed a quick lunch and Daniel, my mom and I headed up to the infusion center. The infusion center reminds me of a city. There are tons of mini rooms all over the place with their own "address" and a mini-market (kitchen) in the middle of it that has everything you could ever need. Seriously every kind of food. It was amazing, and all free. I snacked on string cheese like a queen. Once I was settled in my room they hooked me up to the pre-chemo drugs. These drugs helped me handle the nausea, and heartburn that the chemo would cause. The pre-chemo infusion took about an hour through an IV in my port. They gave me enough medicine to supposedly last me a few days (that was not the case). After the pre-chemo drugs were finished they hooked me up first to the "red devil" chemotherapy and that took about an hour to feed through my line. At that point I felt fine, I looked fine, I was still a book someone would want to pick up and read. After the "red devil" the hooked me up to the second drug. It was a clear fluid and took about two hours to infuse into my line. This drug brought me down fast. Immediately I had a headache beyond any headache I have ever felt before. The pain was intense all over my head and they couldn't give me any medication without my oncologist's consent (she was busy so that meant never). Once the infusion was over more than anything I wanted to go home. I felt this uncomfortable feeling that I no longer had any control of my body and this situation. I think the headache mixed with this unsettling feeling set me up for the terrible pain I felt that evening. On our way out of SCCA we stopped at the pharmacy and picked up my anti-nausea and anti-heartburn drugs and quickly headed home were we buckled down to ride out the storm of chemo.
After the infusion the first few days were intense! Wednesday was the first day I was up and moving at a constant pace which was nice because I got to visit some amazing relatives I had never met that live here in the Seattle area. Some side effects I have had the joy of enduring include: extreme exhaustion- cannot walk around the block without being winded, SEVERE heartburn- to the point of shooting pain constantly in my chest and back every time I breathe- all day, the random bouts of nausea (although I have yet to puke), the bone and joint aches that have left me paralyzed in the fetal position, constant pain at the site of my cancer mass, extremely dry mouth and eyes, sores in the mouth and my gastrointestinal tract flipping sides in deciding how it wants to digest my food. I never knew this till all this happened but chemotherapy kills all cells that are quick dividing. My cancer cells are quick dividing so the chemo will work really well in killing those cells off. However, the human mouth and the gastrointestinal system are also quick in manufacturing and turning over new cells. Therefore all the good and bad bacteria in my body is attacking these sights and causing pain, infection and discomfort. There are tricks to minimizing these affects but they are just as bad as the cause. I mean who really wants to wash their mouth with salt water after EVERY food or drink you ingest?
All of these side effects make me wonder what is going on inside of me. I have put on a brave face for the past month since my diagnosis but feeling all these symptoms messes with my head. I picture a massive battle inside me and each pain I feel is an explosion or gun fight leaving a brutal scene behind (hopefully killing the bad guys). I am a book with a great exterior (again I still have my hair) but my insides are tell a completely different story. I am assuming once I invest more time into my own story the plot will be more to my liking but right now this doesn't seem to be what I signed up for or what "I bought the book for." I knew it was going to be hard, in fact, I thought it would be much much worse. Knock on wood. I think that is what scares me; the fear of the unknown. The fear that each time I infuse I will feel a little bit different, a little bit more defeated knowing my insides are not at all what my outsides show. That is a terrible mind trick. Does that make me a great graphic designer.
This is a shitty job! One infusion down only 15 more to go (hopefully only 15). Stay tuned for this Friday. I am hoping to enjoy my week of good health with some early birthday adventures with friends. Maybe I will get a room this time for my chemo since it is my birthday! Also I got a wig this week but will display pictures of that once my hair falls out. Thank you again to everyone who has sent their love my way. I have received amazing cards, calls, donations and gifts from so many of you. It is actually really nice going down to check my mail and the letters and cards outweigh the medical EOBs and bills that keep pouring in.
Saturday, July 27, 2013
Don't hassle me I'm local...it's my vacation from my PROBLEMS
What do you think of when you hear the word "vacation"? A beach, an umbrella drink and a break from reality? This week was my vacation, however, it was a vacation that sent me back to normalcy. As What About Bob said "A vacation from my problems...you bet I will!" Week 4 was pretty uneventful when it comes to new information or tests yet it was jammed packed with eventful journeys that have left me sitting here on Friday night exhausted so I will keep this week short and sweet.
I have to start this week's blog with last Saturday. Daniel and I got up early and took the dogs to the dog park to meet up with Patricia and Rome. Through all the appointments I feel like I have neglected my dogs and the attention they need so this was long overdue. After about a couple hours of playing in the water and Newton jealously chasing Igby around the park we headed home to clean up for the next adventure. Our next stop was Bite of Seattle food festival at the Seattle Center. Patricia met back up with us at the food festival to eat some delicious grub. This event was incredible! It was very overwhelming the amount of people and the amount of food that was in such a small space but we were on a mission to eat. We walked around for a long time tasting various amounts of food till our stomachs were satisfied. Mission completed.
After satisfying all of our senses we headed to a local pub underneath my apartment for an afternoon beer and fun conversation. By the end of the day my mind was at ease and it was the first night in a long time I slept like a rock.
On a medical update this week has been all about harvesting eggs. This is such an intense process. Since last Friday I have been doing IVF to prepare for my retrieval (sometime early next week). This requires me to take shots (2-3) daily at night. Through this process I have come to terms that I am a huge wimp when it comes to puncturing my own skin. Needless to say I will never be someone who self inflicts pain. The thought of causing my own pain makes my heart race so Daniel, yet again, has come to my rescue in giving me my shots every day. He is strong but I know the thought of him hurting me kills him. It will be over soon. Along with the shots I have to go to the doctor every two days to get bloodwork and an ultrasound to make sure I am on track. Luckily they are super quick appointments and have been really early in the morning so they haven't interfered with my week.
Okay so now that is out of the way back to my fun week! On Monday I got the privilege to go back to work at the bar. Yes, a privilege because I know it sadly won't last much longer. I love the people I work with at the bar. They have been super supportive and are willing to give up shifts so I can make money. While I was working on Monday I was telling a few coworkers that I need to cut my hair before chemotherapy starts so it will be less traumatic when my hair falls out. I keep imagining massive chunks of hair falling out and me holding it in between my knuckles screaming "NO!" as some ballad is playing in the background. Quite comical if you ask me but not something I really want to experience. I had mentioned that I did not want to pay a large sum for a cut that I would only have for a few weeks. After I left work that day two of my coworkers had reached out to friends of theirs and got me contacts for a free haircut. Amazing people do exist. One day I will pay this all forward I promise.
Tuesday was my day of rest. I organized a few things at home and looked over my medical bills. Lets just say this whole process has taught me to be very organized. I also played around with my camera a bit. I think I am going to have to find a Groupon or something for a photography class. My camera is much smarter than it's owner.
Wednesday I made an appointment for my haircut. Now anyone who knows me knows I am super picky about who cuts my hair and how they cut it; so much so that I haven't cut my hair since I moved here because I don't trust anyone to do it right. This week I took a risk, figuring if I don't like it it will only last a few weeks and if I do like it then I found a new hairstylist. After the cut and all the love and support from friends and family I definitely found an awesome stylist I will continue to go to after my hair grows back! Now when my hair falls out it will be in small pieces. All I need to do now is convince my mom or Daniel to shave my head when the chunks start to fall out (neither want to- they think it will be to traumatic). Muahahaha :-)
After my amazing haircut I finally went to the dentist. My oncologist told me I needed to get my teeth cleaned before I start chemo because tooth decay and mouth sores are side affects. from the treatment The cleaner my mouth is the more these side affects can be postponed or prevented. My dentist office is called Supertooth. It is a superhero theme office that played instrumental music of movie theme songs in the background. It totally fit my theme of this whole year, karate chopping cancer, and it actually made me enjoy the cleaning. Oh and the people there were really helpful and nice. They suggested various over the counter medicines that will help keep my mouth "normal" throughout this year. Also, on a side note, I am STILL cavity free!
Thursday and Friday I worked at the bar racking up as much money as I could before I go into hibernation in a few weeks. On Thursday night I went to my third Mariners' game with a few coworkers/friends from my school. We were in the homerun alley right up against the field. Besides dodging a few flying balls it was a fun relaxing night with friends, beer and delicious food.
On Friday after work I cleaned my house in anticipation for a few friends from home to come visit! This weekend is going to be a blast. Saturday I am going to hang out with my friends from out of town ALL day and Sunday, Patricia invited me to go to Capital Hill Block Party with her! Flaming Lips, Frightened Rabbit, Hey Marseilles, Black Marble and so much more. I can't wait- pictures to come!
Overall this week has been just what the doctor ordered. A vacation from my own problems. I have talked to some amazing people, I joined the Young Survivor Coalition, many people have reached out yet again to help me in this dumb time of need and I have a great new perspective on how I am going to treat this year. Ready for it...This year I am working a really crappy job (treatment), but it is only a year contract. In this "job" I don't get paid, in fact I will have to pay to work, I will have crappy hours, I will cuss out my boss (cancer) but know that in one year all the hard labor that I put into it will all be worth it AND look good on my resume (SURVIVOR). One year. I am not dying, nor do I think I will die, it's just a job. I am hard worker so there is no doubt this is a job I will be excel at. Next week I have my harvesting surgery, an ultrasound of my neck/thyroid, my mom comes in town, and I start chemoterapy. Bring it on!
I have to start this week's blog with last Saturday. Daniel and I got up early and took the dogs to the dog park to meet up with Patricia and Rome. Through all the appointments I feel like I have neglected my dogs and the attention they need so this was long overdue. After about a couple hours of playing in the water and Newton jealously chasing Igby around the park we headed home to clean up for the next adventure. Our next stop was Bite of Seattle food festival at the Seattle Center. Patricia met back up with us at the food festival to eat some delicious grub. This event was incredible! It was very overwhelming the amount of people and the amount of food that was in such a small space but we were on a mission to eat. We walked around for a long time tasting various amounts of food till our stomachs were satisfied. Mission completed.
After satisfying all of our senses we headed to a local pub underneath my apartment for an afternoon beer and fun conversation. By the end of the day my mind was at ease and it was the first night in a long time I slept like a rock.
On a medical update this week has been all about harvesting eggs. This is such an intense process. Since last Friday I have been doing IVF to prepare for my retrieval (sometime early next week). This requires me to take shots (2-3) daily at night. Through this process I have come to terms that I am a huge wimp when it comes to puncturing my own skin. Needless to say I will never be someone who self inflicts pain. The thought of causing my own pain makes my heart race so Daniel, yet again, has come to my rescue in giving me my shots every day. He is strong but I know the thought of him hurting me kills him. It will be over soon. Along with the shots I have to go to the doctor every two days to get bloodwork and an ultrasound to make sure I am on track. Luckily they are super quick appointments and have been really early in the morning so they haven't interfered with my week.
Okay so now that is out of the way back to my fun week! On Monday I got the privilege to go back to work at the bar. Yes, a privilege because I know it sadly won't last much longer. I love the people I work with at the bar. They have been super supportive and are willing to give up shifts so I can make money. While I was working on Monday I was telling a few coworkers that I need to cut my hair before chemotherapy starts so it will be less traumatic when my hair falls out. I keep imagining massive chunks of hair falling out and me holding it in between my knuckles screaming "NO!" as some ballad is playing in the background. Quite comical if you ask me but not something I really want to experience. I had mentioned that I did not want to pay a large sum for a cut that I would only have for a few weeks. After I left work that day two of my coworkers had reached out to friends of theirs and got me contacts for a free haircut. Amazing people do exist. One day I will pay this all forward I promise.
Tuesday was my day of rest. I organized a few things at home and looked over my medical bills. Lets just say this whole process has taught me to be very organized. I also played around with my camera a bit. I think I am going to have to find a Groupon or something for a photography class. My camera is much smarter than it's owner.
Wednesday I made an appointment for my haircut. Now anyone who knows me knows I am super picky about who cuts my hair and how they cut it; so much so that I haven't cut my hair since I moved here because I don't trust anyone to do it right. This week I took a risk, figuring if I don't like it it will only last a few weeks and if I do like it then I found a new hairstylist. After the cut and all the love and support from friends and family I definitely found an awesome stylist I will continue to go to after my hair grows back! Now when my hair falls out it will be in small pieces. All I need to do now is convince my mom or Daniel to shave my head when the chunks start to fall out (neither want to- they think it will be to traumatic). Muahahaha :-)
After my amazing haircut I finally went to the dentist. My oncologist told me I needed to get my teeth cleaned before I start chemo because tooth decay and mouth sores are side affects. from the treatment The cleaner my mouth is the more these side affects can be postponed or prevented. My dentist office is called Supertooth. It is a superhero theme office that played instrumental music of movie theme songs in the background. It totally fit my theme of this whole year, karate chopping cancer, and it actually made me enjoy the cleaning. Oh and the people there were really helpful and nice. They suggested various over the counter medicines that will help keep my mouth "normal" throughout this year. Also, on a side note, I am STILL cavity free!
Thursday and Friday I worked at the bar racking up as much money as I could before I go into hibernation in a few weeks. On Thursday night I went to my third Mariners' game with a few coworkers/friends from my school. We were in the homerun alley right up against the field. Besides dodging a few flying balls it was a fun relaxing night with friends, beer and delicious food.
On Friday after work I cleaned my house in anticipation for a few friends from home to come visit! This weekend is going to be a blast. Saturday I am going to hang out with my friends from out of town ALL day and Sunday, Patricia invited me to go to Capital Hill Block Party with her! Flaming Lips, Frightened Rabbit, Hey Marseilles, Black Marble and so much more. I can't wait- pictures to come!
Overall this week has been just what the doctor ordered. A vacation from my own problems. I have talked to some amazing people, I joined the Young Survivor Coalition, many people have reached out yet again to help me in this dumb time of need and I have a great new perspective on how I am going to treat this year. Ready for it...This year I am working a really crappy job (treatment), but it is only a year contract. In this "job" I don't get paid, in fact I will have to pay to work, I will have crappy hours, I will cuss out my boss (cancer) but know that in one year all the hard labor that I put into it will all be worth it AND look good on my resume (SURVIVOR). One year. I am not dying, nor do I think I will die, it's just a job. I am hard worker so there is no doubt this is a job I will be excel at. Next week I have my harvesting surgery, an ultrasound of my neck/thyroid, my mom comes in town, and I start chemoterapy. Bring it on!
Thursday, July 18, 2013
Don't forget to be awesome today!
Week 3 was full of humbling experiences. During this week I learned how to ask for help and how to let go of things I can't control. It was very overwhelming yet extremely humbling. I cannot thank you all enough for the support you have shown me in this battle. It is surreal. People I haven't spoke to in so long are reaching out to me to give me support and it makes me feel so loved. I know I would do the same for anyone in my boat but sometimes I don't think I deserve this recognition. I never felt I was that important to someone yet alone the hundreds who have reached out to me. This has made me change my perspective on my life and like I said it has been incredibly humbling and makes me want to fight this alien cancer even more! So thank you all! I will never be able to repay you and that is hard for me to accept. I also want to especially thank those people who have gone above and beyond anything I can imagine to make me smile or take the stress off me financially. Samantha Summers and Patricia Hayles I will give you my first born children (which could be twins due to IVF-haha) if you can wait till you are almost 40 to receive them. Your fundraiser and all who have donated to it continue to bring me to tears everyday. TEARS. Wow. Also I got a pleasant surprise from my cousin Jami this week. It was a braclet that said "Don't forget to be awesome today" along with a card that said "Being awesome comes naturally to you." I love the thought of this quote. It so simple but so powerful to me. I received it on Wednesday after I talked with my oncologist and it turned my crappy day into all smiles. I even slept in it! I don't need materials or money to know you all support me. I have received so many positive comments and thoughts that those alone are what is keeping me so positive and humorous through this all. It is a front powered by all of you! I wish we lived in fairy land were happy thoughts cured everything because I would be a superhero.
Monday was the beginning of my humbling week. On Monday I had my chemo port put into my chest. My oncologist suggested I have a port put in so that my "young" veins do not get destroyed by the constant poking and prodding that will take place throughout the year. In the port they can draw blood, give chemo and I believe (from seeing someone else go through it) they can even give some other IVs through it. This seemed like a great idea and a simple surgery that I would be able to handle with no issues. Well I now realize I am a bigger wimp than I thought. Daniel and I showed up to the hospital at 7:30a.m. to get blood work and an IV started. Then we waited...and waited. The hospital is not at all like SCCA, there is a lot of waiting around and sometimes it seems like they overbook appointments. Either way, Daniel and I entertained ourselves by listening the the patients next to us be sarcastic with the doctors and the doctors dish it right back as we played cards. It was quite entertaining. Oh, and also, one of my nurses looked like Doc from Back to the Future so that was fun. I should have asked him to teleport me to the future to skip all this. Around 11:00 a.m. they finally took me back to the operating room. They explained the surgery which seemed like a science experiment you would do on Frankenstein. They cut into my jugular and threaded a catheter up and into it so all drugs from here on out have a direct line to my blood supply. Step one in my alien transformation. Maybe they inserted a tracking device like the ones that go into humans on the TV show "V." That would be cool. After my surgery the nurse put me in a post-op room to recover (wake up) and eat. I had mac n' cheese and it was by far the best hospital food I have had yet. I had some pain after the surgery but not terrible pain so I thought "this isn't so bad". At 2:20 p.m. the nurse bandaged me up and told me not to shower for three days and sent me on my way. Ughh...time to get crafty.
Shortly after the pain medicine wore off my body was in hell. The pain on a scale of 1-10 felt like a 10. It felt like I had a metal bar stuck into my chest and it felt like my collarbone was made out of plastic and with the slightest movement it would snap. Walking hurt, laying down hurt, turning my head hurt. The only thing I could do was lay sitting slighting up with my head forward. I stayed this way for the rest of the day and if I needed anything Daniel helped me with it. I felt bad asking for help but I had no other choice. As night fall came Daniel had to go to work and I was home alone trying to sleep with this intense pain. Around 4:00a.m. I had a small mental breakdown but eventually fell asleep.
Tuesday morning when Daniel came home from work I got up to head to my school to meet with my principal to discuss the plan for the year. Daniel had to help me wash my hair in the kitchen sink because I couldnt' move my whole right side and I was told I can't shower for three days. Again...ugh. I felt so incredibly helpless and I owe him 100 guitar pedals for what I sadly feel I am going to put him through this year. This trend of helplessness continued the rest of the day. My friend Alicia picked me up from my apartment (because no way could I drive) to take me to the school and then lunch later. When we got to the school we checked in with my administrator so I could get the information needed to pursue the school district's responsibilities. Another helpless moment during this was Alicia had to take notes for me the whole time. After we met with the principal we headed to lunch with another friend Kate. It was a blast and nice to actually get to do something besides go to appointments and discuss paperwork. After lunch we went to the district office and mapped out a plan for my intermittent disability for the year. Lots of paperwork and I learned another lesson from all this. If you have the chance at your work SIGN UP FOR SHORT TERM DISABILITY NOW! Nobody thinks about signing up for disability when you are super healthy (seriously I check NO to all the questionaires at the doctor's office for health issues) but once you do come down with an alien disease of some sort you can't file for it because you have a pre-existing condition. Lame if you ask me! Guess growing up means thinking ahead.
After sorting things out at the district office my whole body hurt to the point of nausea so Alicia took me home where I sat again, in the same position, for the rest of the day.
Wednesday was jammed packed with tasks for the day. Early in the morning I went to Swedish Med to talk to a genetic counselor to get tested for BRCA1 and BRCA2 genes. Knowing whether these are positive or not will help me determine if I need to have a double mastectomy or not. If positive there is a 40% chance cancer can occur in the other breast sometime in my lifetime. We don't want that to happen! This counselor was brilliant. He asked my family history and asked how many aunts and uncles I have on each side and how many children they have. When I was telling him all of this 9 times out of 10 he knew exactly how many boys to girls ratio there were in each family. The only family that threw him off was my Uncle Greg's (he had 4 girls and no boys). After the family tree breakdown he decided since there was no major history of cancer or breast cancer in my family that the BRCA tests were the only ones that were needed. He drew some blood and that was it. Simple! I should know those results in 3-4 weeks.
After leaving Swedish Med I headed to lunch with Daniel and my friends Krista and Emma. I have been anxiously awaiting to go to this restaurant called Lunchbox Laboratory since I moved here but hadn't made it there till today. Now most of you know I am a huge geek, well this place totally feeds into that. They had amazing burgers and drinks out of BEAKERS!! This is the only time you are allowed to drink out of a beaker. How exciting! Needless to say, I had a blast and it was a nice break.
After lunch Daniel and I headed to SCCA to meet with my oncologist to discuss my chemo schedule and test results. I met with Dr. Ellis and we discussed my MRI biopsy results, body scan and CT scan in more detail. My MRI biopsy was positive (like I said last week) for cancer, however the cancer in my lymph node was very small and should react well to the chemo before it can spread anywhere else. The MRI also determined that I have to have lymph node removal and at least a mastectomy when it comes time for my surgery. My bone scan was negative for any cancer. YAY! However, my CT scan showed a few alarming places in my neck and lungs. My doctor ordered an Ultrasound for my neck for August 1st to check that further. She isn't sure if this issue is connected or a different issue. Now I will jut wait. In the lungs she is going to monitor the nodules found for a few months with more CT scans to make sure they are not growing and to see if they respond to the chemo. They could be cancerous or they could be scarring from histoplasmosis (which most people who live near the Missouri River valley may have). Time will only tell but "Always look on the bright side of life"- Monty Python :) Right? After all the results were explained we set up a calendar for my chemo and went over ALL the possible side effects of cancer. They gave me a large booklet to explain each treatment, each side effect and treatments for each side effect. There was so much information that they actually assigned me homework on which chapters to read before my first chemo appointment.
It was decided I will start my chemo on August 2. That will give me time to finish my IVF and harvest my eggs within the next few weeks and start on a Friday. Friday chemo will help minimize the amount of school time I will miss by giving me the weekend to recover. Any teacher knows its a pain to have to make sub plans and at the rate I am going chemo ALONE will take at least 14 sick days (every Friday). My chemo will start with dense doses. I will take two drugs together every other Friday for 4 doses (8 weeks total) then follow that with different chemo that will be weekly for 12 weeks. For those of you staring at a calendar that means I will be spending my 28th birthday getting my second chemo dosage. I am thinking about making Red Devil cupcakes (in honor of the nickname of the drug) or molecule cupcakes to celebrate the occassion. I will post pictures. Way to get old!
Thursday (today) was a day of rest. I had one panic attack this morning when I took the dressing off my chest and neck to see a round port under my skin. The thought of something under my skin made me a little light headed and brought me to tears. I just have to remember it is all going towards my alien tracking for when I get chosen to travel to Mars for the U.S. (that's still classified info) For the name of science! Haha. I had one appointment this morning at the Seattle Reproductive Center to pick up all my meds to start IVF on Friday. It is a LOT of meds and then I've been napping all day. It has been so relaxing and long overdue.
Friday (tomorrow), I am going to try to get out of the house and enjoy my first Seattle summer. I may go to the dog park to let my dogs roam since they have been stuck in the house all week :( or really I am free to do anything I want. Friday night will be hard though, I have to start my IVF shots. Yikes. Poking through my skin myself makes me nervous.
I want the days to go by to get it all over with but I think I need to slow down and try to enjoy the time I do get to be free. May go on a few adventures next week. So far it looks like I only have morning appointments three days next week! Yay!
Now I have a new scar to match the one on the other side.
Shortly after the pain medicine wore off my body was in hell. The pain on a scale of 1-10 felt like a 10. It felt like I had a metal bar stuck into my chest and it felt like my collarbone was made out of plastic and with the slightest movement it would snap. Walking hurt, laying down hurt, turning my head hurt. The only thing I could do was lay sitting slighting up with my head forward. I stayed this way for the rest of the day and if I needed anything Daniel helped me with it. I felt bad asking for help but I had no other choice. As night fall came Daniel had to go to work and I was home alone trying to sleep with this intense pain. Around 4:00a.m. I had a small mental breakdown but eventually fell asleep.
Tuesday morning when Daniel came home from work I got up to head to my school to meet with my principal to discuss the plan for the year. Daniel had to help me wash my hair in the kitchen sink because I couldnt' move my whole right side and I was told I can't shower for three days. Again...ugh. I felt so incredibly helpless and I owe him 100 guitar pedals for what I sadly feel I am going to put him through this year. This trend of helplessness continued the rest of the day. My friend Alicia picked me up from my apartment (because no way could I drive) to take me to the school and then lunch later. When we got to the school we checked in with my administrator so I could get the information needed to pursue the school district's responsibilities. Another helpless moment during this was Alicia had to take notes for me the whole time. After we met with the principal we headed to lunch with another friend Kate. It was a blast and nice to actually get to do something besides go to appointments and discuss paperwork. After lunch we went to the district office and mapped out a plan for my intermittent disability for the year. Lots of paperwork and I learned another lesson from all this. If you have the chance at your work SIGN UP FOR SHORT TERM DISABILITY NOW! Nobody thinks about signing up for disability when you are super healthy (seriously I check NO to all the questionaires at the doctor's office for health issues) but once you do come down with an alien disease of some sort you can't file for it because you have a pre-existing condition. Lame if you ask me! Guess growing up means thinking ahead.
After sorting things out at the district office my whole body hurt to the point of nausea so Alicia took me home where I sat again, in the same position, for the rest of the day.
Wednesday was jammed packed with tasks for the day. Early in the morning I went to Swedish Med to talk to a genetic counselor to get tested for BRCA1 and BRCA2 genes. Knowing whether these are positive or not will help me determine if I need to have a double mastectomy or not. If positive there is a 40% chance cancer can occur in the other breast sometime in my lifetime. We don't want that to happen! This counselor was brilliant. He asked my family history and asked how many aunts and uncles I have on each side and how many children they have. When I was telling him all of this 9 times out of 10 he knew exactly how many boys to girls ratio there were in each family. The only family that threw him off was my Uncle Greg's (he had 4 girls and no boys). After the family tree breakdown he decided since there was no major history of cancer or breast cancer in my family that the BRCA tests were the only ones that were needed. He drew some blood and that was it. Simple! I should know those results in 3-4 weeks.
After leaving Swedish Med I headed to lunch with Daniel and my friends Krista and Emma. I have been anxiously awaiting to go to this restaurant called Lunchbox Laboratory since I moved here but hadn't made it there till today. Now most of you know I am a huge geek, well this place totally feeds into that. They had amazing burgers and drinks out of BEAKERS!! This is the only time you are allowed to drink out of a beaker. How exciting! Needless to say, I had a blast and it was a nice break.
After lunch Daniel and I headed to SCCA to meet with my oncologist to discuss my chemo schedule and test results. I met with Dr. Ellis and we discussed my MRI biopsy results, body scan and CT scan in more detail. My MRI biopsy was positive (like I said last week) for cancer, however the cancer in my lymph node was very small and should react well to the chemo before it can spread anywhere else. The MRI also determined that I have to have lymph node removal and at least a mastectomy when it comes time for my surgery. My bone scan was negative for any cancer. YAY! However, my CT scan showed a few alarming places in my neck and lungs. My doctor ordered an Ultrasound for my neck for August 1st to check that further. She isn't sure if this issue is connected or a different issue. Now I will jut wait. In the lungs she is going to monitor the nodules found for a few months with more CT scans to make sure they are not growing and to see if they respond to the chemo. They could be cancerous or they could be scarring from histoplasmosis (which most people who live near the Missouri River valley may have). Time will only tell but "Always look on the bright side of life"- Monty Python :) Right? After all the results were explained we set up a calendar for my chemo and went over ALL the possible side effects of cancer. They gave me a large booklet to explain each treatment, each side effect and treatments for each side effect. There was so much information that they actually assigned me homework on which chapters to read before my first chemo appointment.
It was decided I will start my chemo on August 2. That will give me time to finish my IVF and harvest my eggs within the next few weeks and start on a Friday. Friday chemo will help minimize the amount of school time I will miss by giving me the weekend to recover. Any teacher knows its a pain to have to make sub plans and at the rate I am going chemo ALONE will take at least 14 sick days (every Friday). My chemo will start with dense doses. I will take two drugs together every other Friday for 4 doses (8 weeks total) then follow that with different chemo that will be weekly for 12 weeks. For those of you staring at a calendar that means I will be spending my 28th birthday getting my second chemo dosage. I am thinking about making Red Devil cupcakes (in honor of the nickname of the drug) or molecule cupcakes to celebrate the occassion. I will post pictures. Way to get old!
Thursday (today) was a day of rest. I had one panic attack this morning when I took the dressing off my chest and neck to see a round port under my skin. The thought of something under my skin made me a little light headed and brought me to tears. I just have to remember it is all going towards my alien tracking for when I get chosen to travel to Mars for the U.S. (that's still classified info) For the name of science! Haha. I had one appointment this morning at the Seattle Reproductive Center to pick up all my meds to start IVF on Friday. It is a LOT of meds and then I've been napping all day. It has been so relaxing and long overdue.
Friday (tomorrow), I am going to try to get out of the house and enjoy my first Seattle summer. I may go to the dog park to let my dogs roam since they have been stuck in the house all week :( or really I am free to do anything I want. Friday night will be hard though, I have to start my IVF shots. Yikes. Poking through my skin myself makes me nervous.
This isn't even half of them
I want the days to go by to get it all over with but I think I need to slow down and try to enjoy the time I do get to be free. May go on a few adventures next week. So far it looks like I only have morning appointments three days next week! Yay!
Friday, July 12, 2013
I have never really been a good test taker
Welcome to the week of testing. Now I know how it feels to be a highschooler anxiously awaiting the state mandated tests. The type of tests you really have no control over and you just go in with a positive mind and hope you get free candy or food at the end of it. Well that is how I feel this week has gone. It has been a roller coaster of emotions dealing with any and every test my doctors can think of followed by the financial expenses of those tests that insurance may or may not cover. One word sums up this week....Exhausting.
Monday I had to go in early in the morning to the Seattle Cancer Care Alliance (I will refer to it as SCCA) to get a biopsy of my lymph nodes in my left armpit. During the MRI last week they believed the cancer had spread to my lymph nodes but they did know 100% without biopsying it this week. So Monday morning when I arrived I went to the third floor, which I feel has become my second home, to the room I am now all too familiar with. This is my 3rd biopsy (keep count). This biopsy wasn't as painful as the first two but still uncomfortable and left me unable to use my left arm for the day.
After my biopsy Daniel and I went to Best Buy to buy my new camera to help me document this year. We roamed around the camera counter a few times but I just couldn't keep my eyes off this one beautiful black camera.
So we purchased it! No buyers remorse today. Now I just need to learn how to use it :) After we got home from Best Buy I had to deal with insurance the rest of the afternoon. Why can't money fall from the sky? That would make things easier. Lesson learned from all of this...always read the fine print and sign up for the BEST insurance your work offers because who knows when you may get some alien disease. Epic Fail on my part. Oh well, I keep telling myself between tears that money is the least of my worries and I have amazing family trying to help me sort all that mess out.
At the end of my day on Monday I got a call from the Seattle Reproductive Center to go in and get some blood drawn. I did not mention this in my first blog but my oncologist told me due to the type of chemo I am taking it may induce early menopause therefore I have to have my eggs frozen if I want to have kids in the future. Now this isn't 100% truth that this will happen to me but at the rate my luck is going I better be safe than sorry in the future. I mean who doesn't want to see "little Shelby's" running around right? So this is a process I am also going through in the next few weeks. Fun.
Last lesson I learned on Monday was not to Google things on the internet because they only give you the crappy bad information. It is like when you google "why do I have green snot in my nose" and the internet tells you it is the crazy alien disease and you need to go to the doctor before you die. Who knows what is real and what isn't on the internet and really each case is different. I knew to take this advice, a friend told me, when I decided to look up the type of chemo I will be getting. I will spare you the name but tell you patients and doctors (according to the internet) refer to it as the "red death" or "red devil." Awesome. Can't wait!
On Tuesday I had a full day. I woke up early to go to UW Hospital to get a CT scan and a bone scan. I showed up with a backpack full of Star Wars cards and books knowing it would be a lot of waiting between tests. At 9:30 in the morning I was sent in to get a bone injection. To me, being a chemistry nerd, this process was fascinating. They injected me with Technetium-99 which is a radioactive substance that goes into my bone for the scans later on. This Tc-99m only has a half-life of 6 hours but they gave me a bracelet and told me not to try and cross the border or ride on a ferry for a few days because I was considered radioactive and they may come after me. AWESOME! This substance had to travel through my system for a few hours before my actual scan. That gave them time to do a CT scan.
Now I am not a huge fan of drinking a lot of water throughout the day, and anyone who has ever partied with me knows I can't chug drinks to save my life. As set up for the CT scan I was asked to chug a liter of water with 25mL of trace in it to prepare for the scan and I only had 45 minutes to do so. This was a major task for me, but I completed it in 42 minutes and man did I have to pee. After I chugged the magical drink they sent me back to get my CT scan. They told me they would be sending a IV trace through my body during the test and it would cause a warm sensation in my bladder that would make me feel like I was peeing but not to worry because its just a sensation. This made me nervous because anyone who knows me knows I can't hold my pee and with this sensation I may be in trouble. While I was in the middle waiting room I met an awesome breast cancer survivor who eased my mind with her comical rants. She was going in to get "new boobs" and she wanted everyone to know. Once I got into the scan it was quick. I did not pee my pants thank goodness and it wasn't painful. Once it was over I peed forever and then waited for my next appointment: the actual bone scan.
The actual bone scan was also quick and easy. I had to lay on a comfortable table as they scanned by head and body for about 30 minutes. I took a nap through this scan. After it was over I head home in a state of exhaustion. When I got home I slept most of the night with no problems.
Day 3, Wednesday, I had an appointment at 1:30 for an MRI biopsy. Now I had a MRI in week one and I hated it. A MRI requires you to lay still for 30+ minutes face down with your arms above your head. This is very uncomfortable. When you throw in a biopsy (number 4) during this scan it makes it all the worse. This test by far has been the most painful one I have had. It may be because I could not see what they were doing and the sounds were terrifying, but I do not wish this upon anyone. Luckily that night I got to eat dinner with my coworkers and they took my mind off the pain for a while and I even got to talk to a cancer survivor who eased my mind on a lot of things. The days seem to go by fast, which may be a good thing, I mean, they say I only have one year for all this. I just wish I could sleep.
Thursday was my free day! No appointments just recovering and lunch with friends. I also got my results in from both biopsies (lymph node and deep tissue breast) and they both came back positive for breast cancer. This means I definitely have to have a mastectomy and lymph node removal when it comes time for surgery. Not good news. However, I also got back my CT scan and my bone scan results and they were both negative for spread of cancer so it didn't metastasize. That's good news.
Today (Friday) I am going to meet with the Reproductive Specialist to make sure I am a viable young candidate for IVF to eventually freeze my eggs, but I'm not going to go into detail on that. Then the rest of the weekend I am going to wok my tush off at the bar so I have some money saved up before I can't work anymore and it keeps my mind busy. Next week is going to be another long week of tests and procedures.
Again, thank you all for following my blog. Your support is amazing. I will post updates every Friday for the week.
Monday I had to go in early in the morning to the Seattle Cancer Care Alliance (I will refer to it as SCCA) to get a biopsy of my lymph nodes in my left armpit. During the MRI last week they believed the cancer had spread to my lymph nodes but they did know 100% without biopsying it this week. So Monday morning when I arrived I went to the third floor, which I feel has become my second home, to the room I am now all too familiar with. This is my 3rd biopsy (keep count). This biopsy wasn't as painful as the first two but still uncomfortable and left me unable to use my left arm for the day.
After my biopsy Daniel and I went to Best Buy to buy my new camera to help me document this year. We roamed around the camera counter a few times but I just couldn't keep my eyes off this one beautiful black camera.
So we purchased it! No buyers remorse today. Now I just need to learn how to use it :) After we got home from Best Buy I had to deal with insurance the rest of the afternoon. Why can't money fall from the sky? That would make things easier. Lesson learned from all of this...always read the fine print and sign up for the BEST insurance your work offers because who knows when you may get some alien disease. Epic Fail on my part. Oh well, I keep telling myself between tears that money is the least of my worries and I have amazing family trying to help me sort all that mess out.
At the end of my day on Monday I got a call from the Seattle Reproductive Center to go in and get some blood drawn. I did not mention this in my first blog but my oncologist told me due to the type of chemo I am taking it may induce early menopause therefore I have to have my eggs frozen if I want to have kids in the future. Now this isn't 100% truth that this will happen to me but at the rate my luck is going I better be safe than sorry in the future. I mean who doesn't want to see "little Shelby's" running around right? So this is a process I am also going through in the next few weeks. Fun.
Last lesson I learned on Monday was not to Google things on the internet because they only give you the crappy bad information. It is like when you google "why do I have green snot in my nose" and the internet tells you it is the crazy alien disease and you need to go to the doctor before you die. Who knows what is real and what isn't on the internet and really each case is different. I knew to take this advice, a friend told me, when I decided to look up the type of chemo I will be getting. I will spare you the name but tell you patients and doctors (according to the internet) refer to it as the "red death" or "red devil." Awesome. Can't wait!
On Tuesday I had a full day. I woke up early to go to UW Hospital to get a CT scan and a bone scan. I showed up with a backpack full of Star Wars cards and books knowing it would be a lot of waiting between tests. At 9:30 in the morning I was sent in to get a bone injection. To me, being a chemistry nerd, this process was fascinating. They injected me with Technetium-99 which is a radioactive substance that goes into my bone for the scans later on. This Tc-99m only has a half-life of 6 hours but they gave me a bracelet and told me not to try and cross the border or ride on a ferry for a few days because I was considered radioactive and they may come after me. AWESOME! This substance had to travel through my system for a few hours before my actual scan. That gave them time to do a CT scan.
Now I am not a huge fan of drinking a lot of water throughout the day, and anyone who has ever partied with me knows I can't chug drinks to save my life. As set up for the CT scan I was asked to chug a liter of water with 25mL of trace in it to prepare for the scan and I only had 45 minutes to do so. This was a major task for me, but I completed it in 42 minutes and man did I have to pee. After I chugged the magical drink they sent me back to get my CT scan. They told me they would be sending a IV trace through my body during the test and it would cause a warm sensation in my bladder that would make me feel like I was peeing but not to worry because its just a sensation. This made me nervous because anyone who knows me knows I can't hold my pee and with this sensation I may be in trouble. While I was in the middle waiting room I met an awesome breast cancer survivor who eased my mind with her comical rants. She was going in to get "new boobs" and she wanted everyone to know. Once I got into the scan it was quick. I did not pee my pants thank goodness and it wasn't painful. Once it was over I peed forever and then waited for my next appointment: the actual bone scan.
The actual bone scan was also quick and easy. I had to lay on a comfortable table as they scanned by head and body for about 30 minutes. I took a nap through this scan. After it was over I head home in a state of exhaustion. When I got home I slept most of the night with no problems.
Day 3, Wednesday, I had an appointment at 1:30 for an MRI biopsy. Now I had a MRI in week one and I hated it. A MRI requires you to lay still for 30+ minutes face down with your arms above your head. This is very uncomfortable. When you throw in a biopsy (number 4) during this scan it makes it all the worse. This test by far has been the most painful one I have had. It may be because I could not see what they were doing and the sounds were terrifying, but I do not wish this upon anyone. Luckily that night I got to eat dinner with my coworkers and they took my mind off the pain for a while and I even got to talk to a cancer survivor who eased my mind on a lot of things. The days seem to go by fast, which may be a good thing, I mean, they say I only have one year for all this. I just wish I could sleep.
Thursday was my free day! No appointments just recovering and lunch with friends. I also got my results in from both biopsies (lymph node and deep tissue breast) and they both came back positive for breast cancer. This means I definitely have to have a mastectomy and lymph node removal when it comes time for surgery. Not good news. However, I also got back my CT scan and my bone scan results and they were both negative for spread of cancer so it didn't metastasize. That's good news.
Today (Friday) I am going to meet with the Reproductive Specialist to make sure I am a viable young candidate for IVF to eventually freeze my eggs, but I'm not going to go into detail on that. Then the rest of the weekend I am going to wok my tush off at the bar so I have some money saved up before I can't work anymore and it keeps my mind busy. Next week is going to be another long week of tests and procedures.
Again, thank you all for following my blog. Your support is amazing. I will post updates every Friday for the week.
Sunday, July 7, 2013
Round 1...FIGHT
On June 27, 2013 I was told I tested positive for breast cancer. I have struggled with how to tell friends and family and keep them informed with everything that I have been going through without calling every single person. So I decided to write a blog to document my year in karate chopping breast cancer cells.
It all started in February of 2013 when I felt a mass in my left breast when I was showering. I was a little concerned but from talking to numerous people I just assumed it was a fibroid that I had gotten from drinking SOO much coffee (Seattle will do that to you). Being an overworked teacher I decided it was more trouble to go to the doctor to get it checked out then to just wait and get it checked out later. Sub plans are the bain of my existence so I waited till end of March to go to a primary care physician. My physician seemed a little concerned by the mass in my breast and referred me to Seattle Cancer Care Alliance for an ultrasound. Yet again, being a teacher I put it off until the end of May when the mass started to hurt. At the end of May I went in for an ultrasound and the doctors found a cyst on my left breast that was very large. They aspirated the cyst and sent the fluid to pathology to make sure there were no cancer cells. A few days later the doctor called me and told me the pathology tests came back negative. They informed me that the cyst may grow back over time but it is nothing to worry about because it is negative for cancer. So I resumed my daily routines and put it all in the back of my mind.
Then Sunday, June 23, 2013 I had sharp pains and fluid coming from the same location my cyst was. The cyst had grown back almost as large as it was before. This freaked me out and I called the doctor who referred me back to Seattle Cancer Care Alliance. On Tuesday, June 25th I went back to SCCA and doctors found a large mass that was under where the cyst had been previously aspirated. They biopsied the mass to make sure it was nothing alarming.
On June 27, 2013 I got a phone call that has forced me to change the way I look at my life. I have always been someone who said that if a murderer was chasing after me I would just give in and let them kill me. I have never truly valued the life that was given to me; I have just lived it. Well on that day I was told I tested positive for breast cancer. Right then I knew I had to fight for my life. I now have to find value in my life and I am going to karate chop this cancer.
After I received the news of my positive results I had to wait a week for an appointment with an oncologist, radiologist and surgeon to see what steps to take and also to find out really how bad it was. Last Friday, July 5th was a long day of test and information. I will spare you all the details to the tests but after speaking with all three specialists here is what I found out:
-I have grade 3 breast cancer. That means the cells no longer look like breast tissue. It is not a stage but a type of cancer.
-The doctor said the mass is about 9cm in length and in my left breast only. Due to the size they think it is at least Stage 2.
-The surgeon also believes, according to my MRI, that the cancer may have spread to my lymph nodes under my arm.
The specialists then explained to me how my treatment would pan out:
- First I will get a few more scans and biopsies to make sure it has not spread throughout my body.
- Then I will have a port implanted in my chest for chemotherapy.
- Chemotherapy will last 4-5 months each treatment 2 weeks apart with another drug weekly.
- After chemo ends I will have a month recovery and then have a mastectomy or double mastectomy (depending on the results from my genetics test).
- Then I will have reconstructive surgery and recovery time of up to 6-8 weeks .
- After surgery I will then have 2-3 months of radiation to make sure it is all gone.
It is all very overwhelming but I have an amazing support group back home and here in Seattle that are all more than willing to help me in any thing I need and have given me the confidence to fight. I will keep this blog updated weekly to let people know how I am doing and what I am doing in this year long struggle.
It all started in February of 2013 when I felt a mass in my left breast when I was showering. I was a little concerned but from talking to numerous people I just assumed it was a fibroid that I had gotten from drinking SOO much coffee (Seattle will do that to you). Being an overworked teacher I decided it was more trouble to go to the doctor to get it checked out then to just wait and get it checked out later. Sub plans are the bain of my existence so I waited till end of March to go to a primary care physician. My physician seemed a little concerned by the mass in my breast and referred me to Seattle Cancer Care Alliance for an ultrasound. Yet again, being a teacher I put it off until the end of May when the mass started to hurt. At the end of May I went in for an ultrasound and the doctors found a cyst on my left breast that was very large. They aspirated the cyst and sent the fluid to pathology to make sure there were no cancer cells. A few days later the doctor called me and told me the pathology tests came back negative. They informed me that the cyst may grow back over time but it is nothing to worry about because it is negative for cancer. So I resumed my daily routines and put it all in the back of my mind.
Then Sunday, June 23, 2013 I had sharp pains and fluid coming from the same location my cyst was. The cyst had grown back almost as large as it was before. This freaked me out and I called the doctor who referred me back to Seattle Cancer Care Alliance. On Tuesday, June 25th I went back to SCCA and doctors found a large mass that was under where the cyst had been previously aspirated. They biopsied the mass to make sure it was nothing alarming.
On June 27, 2013 I got a phone call that has forced me to change the way I look at my life. I have always been someone who said that if a murderer was chasing after me I would just give in and let them kill me. I have never truly valued the life that was given to me; I have just lived it. Well on that day I was told I tested positive for breast cancer. Right then I knew I had to fight for my life. I now have to find value in my life and I am going to karate chop this cancer.
After I received the news of my positive results I had to wait a week for an appointment with an oncologist, radiologist and surgeon to see what steps to take and also to find out really how bad it was. Last Friday, July 5th was a long day of test and information. I will spare you all the details to the tests but after speaking with all three specialists here is what I found out:
-I have grade 3 breast cancer. That means the cells no longer look like breast tissue. It is not a stage but a type of cancer.
-The doctor said the mass is about 9cm in length and in my left breast only. Due to the size they think it is at least Stage 2.
-The surgeon also believes, according to my MRI, that the cancer may have spread to my lymph nodes under my arm.
The specialists then explained to me how my treatment would pan out:
- First I will get a few more scans and biopsies to make sure it has not spread throughout my body.
- Then I will have a port implanted in my chest for chemotherapy.
- Chemotherapy will last 4-5 months each treatment 2 weeks apart with another drug weekly.
- After chemo ends I will have a month recovery and then have a mastectomy or double mastectomy (depending on the results from my genetics test).
- Then I will have reconstructive surgery and recovery time of up to 6-8 weeks .
- After surgery I will then have 2-3 months of radiation to make sure it is all gone.
It is all very overwhelming but I have an amazing support group back home and here in Seattle that are all more than willing to help me in any thing I need and have given me the confidence to fight. I will keep this blog updated weekly to let people know how I am doing and what I am doing in this year long struggle.
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