Tuesday, December 4, 2007
I am not really looking forward to chemo this afternoon, but I had a wonderful dream last night about a Christmas miracle. I think I might be spending too much time watching the Hallmark Network 21 day’s of Christmas, but I had a dream that my cancer went into remission, found a man that loved me (earthiness and all) and I had a baby. Even more miraculous is that somehow with my tumor riddled ovaries and uterus I gave birth to a baby girl. I don’t know if it is even possible, but I rarely have dreams like that which have not come true. I never wanted to have children until this past March and then it dawned on me one day that I really did want to fall in love and be a mom. That realization pretty much knocked my socks off and when I received by diagnosis this summer I thought it was one of the universes big jokes that that hope and desire was taken away after not wanting it for so many years. But who knows, all things are possible, right? I told you I was watching all those sappy Christmas movies.
Monday, December 3, 2007
This morning I went to the memorial service for my friend that passed away from breast cancer last month. It was very hard and I cried most of the way through the service. The songs really got to me. Maybe it is because I love to sing that the songs get to me the most. It is not fair that Cancer strikes so many people at a young age. She was one of the strongest people I knew. She fought her cancer with dignity and grace that she did everything in her life. People tell me that I am strong and that I am a role model to them. I do not believe that I am any stronger than anyone else. I am who I am. I think we all have challenges in our lives and it is up to us how we choose to deal with them. I do not feel that I am fighting my cancer any different then you would and certainly not how Pam did. I learned many lessons from Pam and her fight with cancer and I hope to be able to follow in her footsteps. She always had a positive attitude and never stopped fighting and looking for the best out of life. I know that with all my many friends that are walking with me (two and four legged) on this journey, that I will be able to get through this.
Sunday, November 25, 2007
I start a new cycle of radiation tomorrow for 9 sessions 3 days a week at 7:30 am which will take me to Dec 15th. We have been doing a very aggressive chemo regimen. Since it is taking such a toll on me, the Doctors and I have agreed to cut back. We are changing the schedule to two days a week, but the combinations are much different and I will be getting only one drug at a time and some will be two weeks apart. My last chemo for 2007 will be on 12/21 so I should be feeling good for the holidays. I only have 8 more treatments to go for 2007. The new schedule should lessen the side effects and hopefully I will not be as sick after each treatment.
The cyst removal on Wednesday went well. I was not prepared for the amount of pain I was going to be in. Because of the location it is hard to move my head from side to side too far or to lean my head back. I spent most of Thanksgiving drugged up, but that is one way to get through a family event. When I left the hospital they told me to watch for bleeding and the nurse laughed when she said that may be the only way I might know it is bleeding is for me to feeling the blood running down my neck. Well, I was standing in CVS waiting for my prescription and all of a sudden I could feel something running down my neck. It is healing, but I seem to have an aching head most the time, but at least the bleeding has stopped.
Oh well, the weekend is almost over and the loafing around must end. I am trying to get laundry done to get back in the swing of things to go back to work and get back the courage to go back to treatment. The two week break has been very nice, even if was me not feeling well that brought it on.
Tuesday, November 20, 2007
The exhaustion continues. Today I slept until 2pm. I got up in the morning long enough to call into work and stuff, but I was back asleep by 8:30 and slept through to 2. I feel like my body is betraying me, it seems to have a mind of its own of what it is capable of doing. Once I woke up I laid in bed for 30 minutes trying to tell my body it was time to get up. All the pain medication is making me constipated (not that you wanted to know that), so I better add some prunes to my diet tomorrow.
The pain seems have increased in the pass couple of weeks. I have meds to take but I can't drive or even really function. They make me loopy...or at least loopier than usual. The problem is that if I am already nauseous the meds tend to make it worse. So I have heavy duty anti-nausea meds that make me tired that I take so then I can take the heavy duty pain meds that make me even more tired. Tonight I was laughing and it was causing pain and that is where I draw the line. Of all the things that cause pain, laughter should not be one of them. That is what I am going to pray for tonight - pain free laughter.
I am not particularly looking forward to tomorrow and having needles stuck in my head. I am not sure what the big deal is since in the last 6 months I have had needles stuck in my kidneys and liver. Maybe I don't like the idea of a needle that close to my brain or maybe because I do not have any extra fat around head. At least being nervous about that take my mind off all the other minor stuff like having cancer or being in pain.
Saturday, November 17, 2007
Well the news from the doctor is No Good News, but No Bad News. So I guess that in itself is a good thing. The tumors have not changed in size, but on the flip side there has been no progression in the Cancer. Considering the rate that the Cancer had been spreading the Doctor feels this is a very good sign. I don’t know how to feel. I really wanted to hear that the tumors that shrunk and the chemo and radiation were making great progress. At least I could hold onto that went I was feeling so crappy.
Twice this week I passed out after radiation and the blood test showed that my kidney function was low, but most importantly my blood cell counts are very low.
The oncologists decided that we would take a couple days off from radiation and chemo. My blood counts tested again yesterday and were higher, but I still feel pretty crappy and need to get a lot of rest this weekend.
I used to use the phrase “It is what it is” all the time, but I realized I have not used it since my diagnosis, when I started to write this post this morning I knew it was appropriate. So my cancer Is What It Is and there is nothing I can do about it.
How Do I Feel Today
1 - Best ever .....10 - Worst Ever
Overall – 7
It has been a rough week and there are parts that I would rather not relive. I have had some high points watching my twin nephews blowing out their 3rd birthday candles on their “Cars” cakes and watching my 10 month old nephew taking his first steps.
Pain – 6
Since I have not had radiation for two days and no chemo yesterday I am able to take more pain meds, but I wish the pain would go away so I did not have to take the meds at all.
Physically - 7
I am still really tired and just do not have much energy. My allergies are bothering my on top of it all and I feel like I could sleep for days.
Emotional - 8
I seem to be very sad this week. I have my moments of happiness but I seem to have a general tiredness and sadness. I am more bummed then I have been in quite a while. But I can’t seem to shake this black cloud that is hanging over me.
Monday, November 12, 2007
I decided to switch around how I record how I document I a feel each day.
Overall - 8
The rough weekend has continued into Monday. A friend passed away of Breast Cancer last night.
Pain - 7
The pain is a little less today, but still pretty bad. At least now I can take pain meds.
Physically - 7
I am still exhausted and nauseous, but as usual getting better every day. I do not have much of an appetite and I have no energy.
Emotional - 8
I am very sad today and apprehensive about the test results this week. I am not sure if it is the rainy Monday, but all I want to do is curl up in a ball and sleep.
11/11/07: Overall-7.5, Pain-8, Physically-8, Emotional-7
11/9/07: Overall-6.5, Pain-7, Physically-8, Emotional-5
11/8/07: Overall-6.5, Pain-7, Physically-7, Emotional-6
Friday, November 9, 2007
1. Upcoming Medical stuff - this is to keep everyone informed of updoming appointments and stuff that is going on.
2. Help Needed. I am not very good at asking for help, but I am working on it. There are a lot of people that ask what they can do to help me, so I figured this is a good way to put out there what I need.
I am working on a new post and I am going to try to finish it tonight when I get back from chemo tonight. I hope you all have a good weekend.
Tuesday, October 30, 2007
If you want some good luck and you need someone to absorb some bad energy I am happy to come around, but if you know of a guy that has been having some extraordinary good luck and is a good kisser, let me know so I can come over and I can lay one on him
Sorry I have not written anything in a couple of days. The weekend was pretty rough. It had is good moments though. My angels showed up to have my carpets and couch cleaned, replaced two more window blinds and to clean out the storage room. I now have a very organized storage room – next we tackle the office and we will be done. I keep saying that if I can organize my life and clean everything with 409 I can get rid of my Cancer. Have you seen “My Big Fat Greek Wedding”? Windex can cure everything. I guess this is the day for movie references.
I don’t really have any new medical news to write about other than I go to the general surgeon on Thursday (11/1) about the abscess/cyst on the back of my head. Now that it has healed over, the surgeon wants to take a look at it to see if he can tell how deep it is. He needs to determine if he can remove it with local anesthesia or if I need to be under put under general. It seems so silly to focus on such a small thing considering everything else that is going on in my body, but the doctors have said that it is very easy for an infected abscess to turn into something big for a cancer patient especially when it is a drug-resistant staph infection.
I think I am going to have to turn on the heat on. It was really cold this morning and I did not want to leave the warmth of the bed. The flannel sheets and down comforter was very warm and comfy when the alarm went off at 5am and the temp of the bed room was only 56 degrees. It was very hard to get up and go to radiation.
Today is a tough day all around. The pain level is pretty high today and the new radiation is kicking my butt. I am tired all the time and instead of just being nauseous every morning I am actually vomiting 2-4 times. I was stuck in traffic this morning going out to the Owings Mills office and I had to make use of the Barf Bags that my friends bring me back from plane trips. Not the best way to start off your day. Last night I let my friend borrow my Subaru to move a couple things out of his apartment to storage and his bought me a nice dinner in return. I now know why I never go out to eat. I actually had an appetite and ate almost all of my salmon, mashed potatoes and asparagus. It was very good and I did enjoy it, but it did not stick around very long. I guess I got some nutrition out of it, but it seems a waste of money. The chemo effects are more intense with the new regimen then it used to be and I have been spending Friday nights in the bathroom. I think that this weekend I will just put the sleeping pad and sleeping bag in the bathroom. I might not get any sleep, but I should at least make myself comfortable. I do sleep pretty well on Saturday nights and was able to sleep until 10:00am on Sunday.
Well I guess that that is enough complaining for the day. I will try to be better with the updates, even if it is just to let you all know how I am feeling and there is nothing new.
Friday, October 26, 2007
Thursday, October 25, 2007
This Radiation thing is kicking my butt. I am so tired every day, but most of all the radiation is pretty intense. With the old radiation I would get nauseous about two hours post radiation. Now I not only get nauseous, but now I vomit two –four times in the mornings. This is just not where I want to be centering my focus. Tomorrow is the start of the weekend and most of the world’s population is looking forward to it, I am not. I dread weekends…they are not any fun for me. I have other things I want to do. I started writing this post about how I thought I was coming to terms with my illness and I was using the experience to find out more about myself. I also figure that I am not a very strong person, but that I pull strength from the people around me who love and care for me.
But today I think that is all the PC bullshit. I Hate This. I don’t want to have Cancer. I want to have a real life. I am angry, and I am sad, and it is just not fair. Something happened this week with the bank that happens to all people, but it takes energy to deal with it and it is not over yet, but I do not have the energy to deal with it. It was the last thing on top of all the other things I was dealing with that I just did not need. Tuesday I went into work late, Wednesday I went home early. I know that I should be happy that I am able to work at all, but it not enough -- It Sucks – I Want More
A good friend of mine is moving in with his girlfriend next week. I am so happy that he has found someone to share his life with. He deserves it. He has challenges ahead, but he is happy and ready to tackle them. I so very excited for him, but dammit, I want that. That is what I want to be dealing with right now, instead of dealing with all of this crap. I want to fall in love. I want to be happy, I want to be working in my garden, I want to be camping, I want to be a potter, I want so many things, but most of I don’t want to have Cancer, I do not want to have the life I have now. Don’t get me wrong, I have many wonderful people in my life and in many ways it is enough, but I want more……
The tulip picture on the right was taken one spring morning on my way to work. I remember I was running out the door and I noticed the tulip dripping with dew and I remember thinking how beautiful it was. I ran back into the house and grabbed my camera. I love working in the garden. I planted those tulip bulbs in 2002 and it is one of the few that the chipmunks did not get to. Spring and Fall are my favorite seasons. Fall is my favorite for hiking and camping, but spring is my favorite for flowers. It is the best reminder that life renews itself every year after a deep sleep. I have titled the picture “Spring Will Come” because I truly believe my spring will come.
I spent last spring re-doing my back yard and I started to dig up the front garden. I was hoping finish up the work in the front and plant bulbs in the back this fall. But the Doctor has forbidden me to work in the yard and it I don’t know where the energy would come from if I tried. I am really disappointed, because there is nothing better than seeing the spring flowers fight their way through the cold weather and dark earth is a beautiful thing. I might not be able to finishing re-doing my gardens, but I guarantee I will be planting some bulbs to prepare for winter and ultimately welcome spring. It has always been hard to ask people for help, but now I am asking, if there is anyone that would like to play in the dirt with me next weekend to get a little gardening done to help prepare for spring, I would love to have your help.
Tuesday, October 23, 2007
There has been the physical exhaustion of hiking including 10-15 miles at Yosemite, week long camping trips, century bike rides, kayaking, white water rafting, running after my nephews, or even catering a big event. I have experienced the mental and physical challenge of being on the road for months at a time, a new city every couple of weeks, training 25 new students 3 days in a row for 8 hours a day while standing on my feet.
I have even had surgeries and other illnesses. I remember when I was 20 I had knee surgery and my right knee was in a cast from thigh to toe and I was on bed rest for 6 weeks. I was on a lot of pain meds and slept a lot. When I started to get up and around I was tied all the time and just the little bit of movement made me tired.
Well let me tell you that the current definition for tired is exhausted, fatigued, weary, weak, lifeless, or lethargic. What I really want to say it that it blows. All that stuff in the past is a walk in the park compared to this. Maybe it was all in preparation for this part of the journey. I am tired all the time. I know I am older now and all, but come on, am I 35 not ancient. I think I could sleep 20 hours a day and still be tired. I know that sleep is what my body needs and it is helping me fight but here is the kicker – knowing things on an intellectual level and knowing them on an emotional level are two different things.
I come home from work everyday and take a nap. Sometime it is only an hour and other times it is three hours. Then I get up eat dinner and often go back to bed. Sometimes I will wake up from my nap and lie in bed feel wide awake and have some energy. I think about making myself dinner, do laundry, run the vacuum or do something fun. Often as soon as I get out of bed I realize I do not have the energy to do anything. Instead I go to the kitchen and nuke something and then climb back into bed. Such an exciting life I have.
A couple of weeks ago on my one and only off chemo weekend I fell asleep on my couch at 6PM. I moved to my bed at 7PM and set the TV sleep for 30 minutes but promptly rolled over and fell asleep. I vaguely remember the TV turning off and got out of bed at 8:15AM the next morning. I still need sleeping pills for me to fall asleep at night and to make sure I stay asleep. I get up several times to go to the bathroom or to massage my feet due to the pins and needles neuropathy in my feet, but the sleeping pills help me go back to sleep. There is nothing worse that laying in bed with your gloomy thoughts in the middle of the night when you can’t sleep and you are exhausted.
Besides from the exhaustion I am pretty weak. Someone mentioned that I am slow as molasses. I am walking better than a couple of weeks ago now that I am healed from the Liver biopsy, but I am still slow. A friend and I were crossing the street today to go to the bank and we barely made it before a car got us. We were technically jaywalking, but that is beside the point right? I know what you are thinking - I am becoming a law breaker. Last week it was stealing the People magazine and transporting alcohol over state lines. This week jaywalking – what will it be next week. Hmmm…..maybe robbing a bank or a liquor store. i would settle for some good luck. Maybe the winning lottery ticket.
I feel old and feeble. I have trouble making my bed by myself, I can’t pick up anything heavy (not that anyone would let me) and just the idea of pushing the vacuum (even if it is self propelled) makes be tired. If I stand up too fast my eyes go black and I get dizzy, but I can’t seem to get it through my thick skull to stand up slowly. Guess I am a slow learner.
Monday, October 22, 2007
I like to call the people who help out every week, even every day my Angels. I could not get through this without them. I have Angels that do tangibles things like bring meals, go to the store, bring flowers, buy hats and scarves, help me clean and organize, take out the trash, hang pictures, replace blinds, give hugs, etc. There are also the Angels that do the intangibles things that can not be counted like listening to me venting, reminding me to eat, sitting with me, laughing with me, crying with me, taking me to lunch, telling me jokes, answering the phone at 1am when I can’t sleep and so many things I can not think of. The most important one is praying for me. This is probably the one that will make the biggest different and the one I struggle with the most.
This weekend was a tough one, I was very sick on Friday night and all through Saturday. I could not keep down food and on Sunday I was very tired. The thing that made the difference was the people. One friend went shopping for clothes. I HATE clothes shopping!! She loves it. I gave her a list of things I need and off she went. Another friend also went shopping and got me a new area rug for my living room and then yesterday got the pad to go underneath and they laid it down. It looks great by the way. I should mention that the friend with the rug was having people at her house Saturday night at 7 and was at my house until 6 helping me out. Another friend checks on me every day and is always there whenever I need it. I can never say thank you enough or say how much you help or what it means to me. You are truly my Amazing Angels. Thank you being a part of my life. I hope all of you that reading this have Angels in your life.
Saturday, October 20, 2007
I am exhausted. I went to bed early and every time I am about to fall asleep or just dozed off I could feel the urge to vomit and found myself running to the bathroom. Somewhere around midnight I just grabbed a pillow and blanket and laid down in the bathroom for a couple of hours, but did not get any sleep. If I was not vomiting it is coming out of the other end. Can’t they pick a drug the either causes nausea or diarrhea, but not both? I know I have a sensitive tummy, but I think they need to re-examine the anti-nausea drugs. I am so dehydrated, but I can keep down much water or ginger ale at this point. I have a horrible headache and I feel as though I have the worst hang over, but I did not have the joy of the party.
I am so not enjoying life today. I am trying to do my yoga breathing and imagine myself in a better place. I remember being at the top of Nevada Falls in Yosemite, kayaking with the whales in the San Juan Islands in Washington States, hiking in the beautiful green rain forest in Olympia, walking in Tuscany or visiting the Forum in Rome, sitting on the rocks in Monterey, cooking a sumptuous dinner or sitting at the pottery wheel and taking a lump of clay and making something beautiful. These are all great memories and I look forward to making more, but it is a struggle to look past the pain of today. I know I have had wonderful opportunities to visit these magnificent places, but it is not enough. I want more…..I am not done living.
I had to reschedule my appointment with the pain management specialist on Thursday to deal with the results of the latest tests. (It is easier to refer it to that then to say the spread of the disease). I am in a lot of pain today. It does not help to be leaning over the porcelain throne all night.
I was able to sleep a little this morning and Oscar visited me in my dream. I know it was his way of encourage me to keep strong and to remind me he is with me. When I woke up I could still feel the warmth of him on my forehead and the tear damp in my eyes. I remembered all the times we laid forehead to forehead as we slept. He truly was the love of my life and I was honored to have him in my life for the four years he allowed me to love him.
Friday, October 19, 2007
Anyway I will tell you about my past two days, but I am not going to share all the details of the fun evening, but I am smiling just thinking of it. If you ask nicely I might tell you about the blue wig I wore.
Thursday morning started with radiation at 6am then I came home for a leisurely cup of tea. I went to Acupuncture which was I have to say was really nice. They did a combination of acupuncture, aromatherapy and healing oils. My office got together and gave me a gift certificate for The Well. I was so overwhelmed from the generosity of my co-workers when I opened the card. The acupuncture has been great. I left there feeling very relaxed and headed back downtown. I had an appointment with my nurse case manager. She basically coordinates with all my doctors. I switched to a HMO last year with was a good idea in retrospect because they pay for everything, but only my primary doctor can give me referrals, so it can be a bit of a pain in the ass.
I had lunch with a really good friend and then I headed back to Hopkins for the heavy appointments of the day. The first was with doc for the Radiation. I call him the Blaster Doc. He does not like it very much. Oh well, that is what he does, he blasts my body with radiation rays. Based on the latest test results I agreed to redirect some of the radiation for the remaining weeks. I have 4 more weeks of radiation and they are going to blast my left kidney, liver and the nodes in my lung. Radiation will end mid November. I told the doctor that if the new tests show progress I will do 4 more weeks, but they will have to find me a new slot. I refuse to get up at 5 am in the middle of winter when it is cold as shit. (I hope you all don’t mind a little cursing – these days I seem to do a lot of it, but I will try to keep it clean here)
The other big appointment at Hopkins was with the doc for the chemo. She is a wonderful lady and a competent doctor. They have started me on a new cocktail. Doesn’t cocktail sound so sophisticated? It sounds like it should be a fancy drink with a cherry or olive or something, but in reality it is just bags of poison they put in my body that has no discrimination over what kind of cells it kills – good or bad. I am going to have a new treatment regimen and I am starting some new meds. Not all the meds are on the same cycle and some are in pill format. I am too tired to go into detail. Because of the new meds and their cycles I will not have and weekends off and we are still debating thanksgiving, but I will have Thanksgiving Thursday and Friday off, but I might have to get chemo on Saturday. I have been firm with the Doctor about Christmas. My sister is coming in with her family and I am taking vacation. It will be the first time all 5 nephews will be under one roof. I refuse to be sick for it. I will not be having chemo the Friday before Christmas Eve and until after New Years. I know this is my health and some people would say this is my recover, but I would argue that this is my life and I need to live it now.
The last and final appointment of the day was about the abscess on my head. The funniest part of the day was I was reading People magazine when I was waiting for the doctor and when he walked into the room and asked me how I was doing I replied “I am devastated that Matthew Mcconaughey had a girlfriend” The doctor did not quite know what to say but the nurse laughed. No one will ever accuse me of losing my sense of humor. I went to the surgeon two weeks ago and the sore opened up again last weekend so I went back to doctor. He said it is a subcutaneous cyst and drug resistant form of staph. This is me we are talking about, what else would it be. It could not have been something simple like a pimple. Anyway, he wants to remove it, but no pumpkin head carving in the office for me, he wants it to heal and then we will schedule it for the surgery center (out-patient).
Well – I am now exhausted so I will make this short. I had chemo today. They mixed things up a little. I am tired, weak and have been vomiting since I got home. I hate this, I like last Friday so much better. I think if I am going to spend Friday nights throwing up I should have been able to go out to happy hour, flirt with some cute guy and get drunk before I vomit. I miss going out to clubs, flirting, and picking up guys (putting them down after I was down with them of course). Now I just get the after effects without the partying.
Wednesday, October 17, 2007
Last week on 10/10, I had a liver biopsy. Yesterday I had a Brain CT Scan and PET Scans. I went to the doctor this afternoon and got results back from all the tests.
The good news
The CT scan showed that I do indeed have a brain. Whether or not I choose to use it is a whole other story. That is about all the good news I received today... So I have determined I am not the scarecrow from the Wizard of OZ. I also guess since I have courage, and a heart I am not the cowardly lion and Tin Man. Maybe I represent Toto or one of the dwarves.
OK the Bad News
The cancer has indeed spread to my liver. The spots that showed up on my ultrasound a couple of weeks ago are indeed cancer. They also found a couple nodes in my lungs. I guess there is other good news that there is no sign that it has spread to my brain.
I will be continuing with the radiation for the next 5 weeks or so until the end of the planned 11 weeks. They are changing the areas of focus a little. We may pick up some after the New Year. I have an appointment with the Chemo doctor on Thursday. We are going to mix up my chemo regimen a little. I am also going to meet with a pain management specialist on Thursday.
Annoying Misc Medical Stuff
The sore on my head has come back. I have an appointment with my general surgeon on Thursday afternoon. Last time I saw him it was pretty much healed and we decided that if came, it would need to be removed. I went to The Well (Healing Art Center) and had a treatment with healing and medicinal oils hoping this treatment with help and maybe we can avoid the need to have it cut out, but I might be Dr. Falcao’s pumpkin for carving this fall.
Thursday afternoon I have an appointment to see the surgeon about my head. I am getting another herbal treatment with acupuncture treatment before hand, so I am hoping they will not need to cut anything out or this do, it will be less.
Thursday will be a day of doctor appointments starting with a healing acupuncture treatment, chemotherapy doctor, pain management doctor and then general surgeon to evaluate the abscess on my head.
My Thoughts I knew in my heart that the liver biopsy was going to come up malignant, but it was still a big blow. I have not been able to absorb it all. I am angry, frustrated, tearful, scared, did I mentioned angry. I hate the word survivor and victim. I think calling myself a survivor is like tempting faith. Having Cancer is a never-ending war with lots of battles, each battle takes a winner and a loser, statistics might be like: cancer 2, patient 5..who knows how the whole war will end. Instead of victim - I prefer to think of recipient of gift. Victim has a lose mentality. Granted the gift of cancer is not what you want and certainly one you can live without (no pun intended), but thinking about all the gifts we get at Christmas, birthdays or other times in our lives that people give us something they think we may like it, but in reality it is awful and our first thought is why me or how can we get rid of it right away. Gifts are not always what we want, wars and battles are not fun, but we learn a lot from them.
This past weekend was a lot of fun. I am in favor of non treatment weekends. I enjoyed time with friends, found the wig/costume area in the Halloween section at JoAnne’s crafts on Saturday. We found some wonderful wigs, (each around $5) including an awesome long red curly with braids that I wore to church on Sunday and the renaissance festival. While at the Ren Fest I also got a tattoo. I probably won’t be wearing most the wigs to work, but I promise I will when going out and who knows what color I will debut at church next week.
Stay turned for more updates.
Friday, October 12, 2007
Ok, here comes the bitching part of the program. Yesterday I had a big meeting at work that I was co-leading. One of my biggest complaints of the chemo is the cognitive effects. I call it my personal form of pig Latin, but I can’t seem to get the right words out. Sometimes I say the right letters and other times it has the right syllables. Maybe the people who know me well know what I am trying to say. I feel like I need to correct my mistake and that makes it even more noticeable. I am very self conscious about it. I try to make a joke about it, but it is very frustrating. I taught a training class the other day and I either fumbled over my words or lost my train of thought. One of my co-workers said that it is probably more noticeable to me than to anyone else. But these are my colleagues and not everyone knows what is going on and I am not going to pull out the cancer card for not being able to do my job. I know some people are amazed that I am still working, but this is what I do. I work, and I think I do a damn good job at it, even if I have cancer and it slows me down. Cancer is not going to take everything away from me and it is not going to define me, even if it monopolizes my days, nights, thoughts, and body.
Wednesday, October 10, 2007
So this is my first official blog post and it is a little long (OK a lot long). I know that there are a lot of people that care about me and want to know what it is going on. I also know that I do not always do a very good job of communicating. Ok…I admit….I rarely do a good job of telling people the current health status especially the bad news and when I need something.
There are parts of this that are repetitive of emails I have sent out before. I apologize for those who have read them but I thought it best to start this with all the information. I also might give a little more information than some of you would ever like to know, but it in the name of full disclosure.
Ovarian Cancer: June 2007 (Stage IV)
Left Ovary, Uterus, Fallopian Tubes, Kidneys
I am on 3 different chemo drugs. My cycle is 3 weeks on, one week off. I just finished my 3rd cycle.
I am also having radiation every weekday. I have 5 more weeks.
I was having pain in June; ran tests and we found a big ovarian cyst. At the same time they diagnosed the cancer (without biopsies). They hoped the cyst would resolve itself and we were talking about a hysterectomy. Unfortunately, the cyst had other ideas and on 7/5/07 I had emergency surgery. They were able to take a good look around and take biopsies. I was referred to an oncologist at Hopkins and we decided that I was not strong enough at the time for surgery and we would start chemo.
I have had countless tests; ultrasounds, biopsies, CT scans, MRI, blood tests, etc. I have multiple masses in my left ovary, three tumors on my uterus (one of which is new as of 9/5/07), tumors on my fallopian tubes and kidneys.
I started chemo on 7/27 with two drugs in an IV. On 8/17 on what should have been my weekend off from chemo I had a kidney biopsy. I got the results back the next week. They found two masses in my left kidney that were both malignant and a lump on my right kidney that was also malignant. The next day I had to put the love of my Oscar to sleep. It was also the day I had my head shaved. Below is an email I sent out 8/21.
Just wanted to give you all an update on what is going on.
I had kidney biopsies last Friday and got the results yesterday. Not good, but that is what I expected, but it would have been nice to get some good news. The doctors are concerned and want to take an aggressive approach, but they do not want to operate yet. They want to try and save the kidneys and see if the chemo prevents the cancer from spreading any more. I am going to start radiation next week. Every morning at 6:00am. UGH! I will be going to bed early every night I'm sure. Went to the doctor yesterday morning. I am having a colonoscopy on Thursday (lovely prep for it). And then I have chemo on Friday and they are adding a third drug targeted at the cancer in kidney. No relief for the weary! They think I am having some acid come up at night that is causing the nausea to be worse. They are going to try me on some medication, but I might be having an endoscope as well. Why they can't do both at the same time, I do not know.
I am losing my hair at a pretty rapid rate. I cut it to chin length last Monday, but it has thinned considerably more and there is not much left with a couple prominent bald spots. My bathroom trash can is pathetic; full with curly hair, but I can't bring myself to throw is out. I wore a black scarf yesterday as a head band in the morning, but as the day went on, more hair came out on the top so I switched to cover the whole head. I am really self conscious about it. I am going to buy some hats and scarves made for cancer patients. I just don't see myself as the wig type. Today I am wearing one of the scarves I got in Italy. It is a mix of oranges and browns and it does fit my personality than a black one. When was I ever the conservative dresser? I think I will be biting the bullet and shaving the rest of my hair. I am getting sick of finding hair on my collar and pillow. Of all the things going on right now, this is the one upsetting me the most. Guess I am more vain than I thought. And I always said that I did not care about my appearance, "what you see is what you get", but losing my hair is really hard for me.
The Oncologist wants to start the intraperitoneal chemo soon, maybe even as soon as the next round. That is where they put the chemotherapy directly in the abdomen through a catheter. Studies have shown an improvement for survival for the trial participants than just intravenous only chemo. However, the side effects can be worse and poorer quality of life is reported. It requires a surgery to put in the tube into the abdomen and the original thought was to wait until surgery.
I don't know what to do. The oncologist says it is up to me, but he recommends an aggressive approach since the severity of the cancer and how much it has spread. I can't imagine more side effects. I already have the metallic taste in my mouth, feet tingling, sore scalp, hair loss, nausea, vomiting, diarrhea, tiredness, and plan old feeling like crap. The side effects of radiation are fatigue, nausea, diarrhea and vomiting. Oh joy, can't image being more tired. Good thing for sleeping pills so I am at least getting some sleep instead of lying awake for hours at 2am. I am losing weight, but still can't fit into my pants. I asked the doctor if he could suck out some of the fat when they operate and he said only if they found cancer cells in the fat tissues. I asked if I can bribe the lab into making an error with the biopsies.
Oscar is not doing so well. The muscle tremors have gotten worse and he is chewing at his legs. I had to shave a lot of his fur so he would not get too many hotspots. I think his legs hurt him. He looks like he has Parkinson's, when he just sits and his head shakes. Sometimes he head is shaving so much that you can hear the jaw knocking together. He often does not want to get up or when he is laying down is legs are shaking violently. He is not eating much (can you imagine that?) He has maybe eaten a total of a cup of kibble since Friday. When he does eat he coughs it back up. I think the muscle in is throat are breaking down and making it hard for him to swallow. I knew this would eventually happen after we saw the specialist in April, but I was hoping for more time. I am afraid he is dying and although he is very stoic, he is definitely not himself. I am going to have to make a tough decision. And here I thought it could not get much worse.
Please pray for Oscar. I really appreciate all the support you are giving me.
I found that shaving my head was very empowering and I have had fun with hats and scarves. On 8/23 I had a colonoscopy and the good news is they did not find anything – Good news for once. On 8/24 they added a third chemo drug and I started radiation 8/28.
On the break of my 2nd cycle of chemo I had ports put into administer chemo; one in the chest for the regular chemo (systemically) and one in the abdomen for intraperitoneal chemo. I was dreading the ports (not sure why), but I have to admit the port-a-cath is nice, because I was getting sick and tire of my veins getting jabbed. Needless to say, I have not spent too many weekends having fun. Don’t get me wrong, I have had plenty of great people around, but I can think of many things I would rather be doing.
Last week I have my 5 week radiation kidney ultrasound check and the results were mixed. The good news is the node on my right kidney on my right kidney is completely gone but the left kidney is not fairing so well. The size of a normal kidney is around 11cm, 5cm, 2.5. My kidney is 17cm, 10cm, 6cm, 21cm, and 4cm in different places. No wonder why am in so much pain and have to go to the bathroom every hour. They took a lot of blood work for kidney function tests and then had to get a MRI of the abdomen. The results did not come back so great and today 10/10/07 I had a liver biopsy. For those of you who are curious. I had to get a few needles to numb my back and they cut two one inch incisions and then stick my liver with this large needle to get cells from different areas from the liver. It will be about a week before I get the results. It is frustrating how long it takes to get the results back and for things like treatment plans to be decided. It is not unusual for advanced ovarian cancer to spread to the liver and often becomes severe when it does. It is rare for it to spread to the kidneys, but then again when have any of you known me to be normal. I was very upset to hear (as well as the doctors) that it may have spread to the liver.
I think I covered all the medical facts. I know there are a lot of people concerned about me. Especially because I tend to put on a tough front that I am doing OK and do not want to talk about thing. I always said that my golden retriever Oscar was very stoic and did not show what he was really feeling. That is a good description of me. I learned at a young age, that whatever was going on, you pulled yourself together and moved on and put on a happy face. If you had to breakdown you did it in private.
The test results last week might have been the hardest for me since the initial diagnosis. I did not want to talk about it because then it would be real. The reality of the situation is that it is really grave and there is a real possibility I could die. Surgery is not an option now because the doctor does not feel that I would be able to survive a long surgery right now. That terrifies me…there is so much more that I want to do…so surgery is not an option and I will just continue radiation and chemo.
I am so angry and tired. There are so many days that I come home and scream and cry and throw things. I keep why. I always said that God has plans and there is a journey for everyone. Well I don’t like my journey anymore. I have had enough. It has been a hard one. I don’t like to complain, we have all had our trials and mine really are not that worse than others, but I am 35 and I want my happily every after.
I am in pain every day. The kidney pushes on my ribs and other organs. The tumors in my ovaries cause pain, when I have my period the cramps cause the tumors to contract to and the pain is overwhelming. And then I ovulate…and least it is only every other month. I guess there is something to be said for things operating normally. I tell you guys you have it easy. I always prided myself on being unique…but being 35 with an aggressive form of Ovarian metastatic cancer is not really what I wanted.
Chemo weekends suck. I leave work at 11:30 and to get to the clinic by 12. I usually get home at 4:30. I am usually tired and feel like crap, work out, like I just hiked 10 miles but did not have the thrill of the hike. The norm has been that I start vomiting at midnight and it lasts until 9 in the morning or so. This alternates with diarrhea. I take another anti-nausea drug at 8am and it helps stop the vomiting, but I am nauseous for the rest of the day. This past weekend though I started vomiting on Friday evening and it continued until Saturday night. They say the IP chemo has more intense side effects.
I have radiation every day at 6am down at Hopkins and I try to be at work by 6:30. It takes more time for them to move the machine and position me than it does for the actual radiation. I have been trying to work full time. I know some people have been amazed at that, but I didn’t, I would not be me. I leave around 3:30 most days which is really a full day if I get is at 6:30, but I still feel as though I am leaving early. Some days I do not make it that long. There have been a few days I have not made it past 9 or 10am.
I am not sure what is worse; the disease or the treatment. I know I am in pain and tired, but the treatment makes me tired and the side effects are horrible. I am exhausted all the time. I have horrible neuropathy (painful tingling) in my feet, horrible taste in my mouth; I am finding my tongue hurts after 5-6 bites of food even if the food is bland and at room temperature. It as if the nerve endings on my tongue are being cut. My favorite foods do not taste good any more. There are some foods I am not allowed to eat anymore and more often then not I throw back up whatever I eat. I am sick of being nauseous (no pun intended). Before I eat stuff I contemplate whether it will taste good coming back up. I hate being fat and bloated all the time and not being able to fit in many clothes. If I can’t keep food down I should not be gaining weight.
Thankfully Elisabeth helped me go through my closet (ok she did all the work) and I no longer have clothes that do not fit, but I only have black pants. I wonder how much a uterus weighs. I want my old life back. It is beautiful outside and I don't have the energy to go hiking or even a long walk in the woods to watch the leaves change. I am sick of getting up at 5am every morning. I want to sleep in.....with someone. I miss my hair. I am OK with it, but I still miss it. Cutting it was harder then anything, but having it shaved was empowering. I am cold all the time….well except when I am hot. I know that does not make any sense but I am have trouble regulating my temperature.
I want a boyfriend. I want to fall in love. I want have to energy to do the things I love. I hate having to depend on people. Please don’t take me wrong. I love and appreciate all that you have done…..the food, the organizing, the cleaning, listening, taking over when needed, not taking no and knowing that I need help. But I like independent. I know I probably still make it seem like I have it all together, but I don’t. I am falling apart and I am so scared and I don’t want to do this. Some days the only things that keep me going is was Oscar and now I talk to him all the time, my nephews and just being grateful I wake up every day. I don’t know why I can sleep during the day, but not at night. Do you think I can get a heartbeat installed in my body pillow so it can lull me to sleep at night?
I had that stupid abscess on my head. It could have been an infected hair follicle or a cyst. It is not like the hair follicles are doing anything so I guess it was just bored and was thinking “hey, what can I do to entertain myself?” And of course because it is my luck, it got infected and it was a drug resisted Staph and I had to go to the hospital to get it drained because I had nothing better to do that weekend. Can you tell it is my sarcasm and bad sense of humor that gets me through? I went to the surgeon on Monday and he said that the sore is not completely healed and the infection will probably come back, but he does not want to cut it open and do anything now. I am to watch it (like that is an easy thing since it is on the back of my head) and go back if it get infected again.
Next week I have a PET scan and a brain MRI. I asked what are we going to do if the brain MRI comes up negative and the DR asked what do you mean? I said “What if you do not find a brain” I keep telling the doctors that if they keep looking for something and they keep searching, they are going to find something. Can’t we stop searching? What else are we going to find. I do not know if I am strong enough to handle more bad news. I feel like I am being tested to my limit. I one told someone that I do not mind running marathons and jumping hurdles but I like to gave a bit of a rest between the jumps
I also asked I if I could be the next medical ad. This is your Brain….This is your Brain on Chemo. I really want to go to Busch Gardens and ride the roller coasters and one of my friends called me about going to Fright Fest the end of the month. She asked me if I can reschedule chemo and I said, “Let me ask the Dr if I can switch my chemo so I can ride a roller coaster. It does sound a little petty in the big scheme of things. I did say something to the doctor last month about rearranging my chemo and radiation schedule so I could have a social life and he said it was hard to have a social life if I was dead. So then I said that I had a smart ass for a doctor. He sad he had to be if he had a smart ass for a patient.
One of the things that drive me crazy is when people ask me how much long I have in chemo or where I am in the cycle. The problem is I do not know. Radiation is the only thing with a finite time frame because there is an end date. They can only give me so much radiation. I call it zaps, so I know it will end in 6 weeks, but the chemo will go on for as long I let it or I am alive. The other thing that drives me crazy is when people I hardly know especially at work will come up and ask me questions not because they really care, but because they are curious and I am going to come up as topic at the next water cooler conversation. I really love it when those same people tell me that they know someone with cancer and they beat it and I can too and I just have to fight hard. I am so glad they said that, because I was just going to sit back and twiddle my thumbs and take my chances.
Maybe this blog was not such a good idea. It might just be giving me a forum to bitch. It you have the patience to read all of this I thank you. I am going to try and keep up with this. I believe you can subscribe to this to be notified when I post and update. Also feel free to make a comment or send me an email. Thanks again to all that are praying, lending your help, time and love. It does help and is making a big difference.