Friday, August 1, 2014
Thursday, July 31, 2014
So, my cancer is stable. While that is great news, it's not great what has happenned to my kidneys and bone marrow. For awhile my oncologist thought I may have a secondary cancer. He did biopsy my bone marrow. That came back negative. That was good but what wasn't was my blood counts are so low I'm fighting fatigue. During this period which was started in may of 2013-until now, I'm struggling with my blood counts. I have very dark urine, that is full of foam. I had to go in for the kidney biopsy so I was transfused then. I did not notice a difference. I also came down with pneumonia in March, got a transfusion then, and it did feel better after. My getting sick was a good thing. That stay in the hospital, really jumped me into feeling better. I think, my port was infected and I had mass infections elsewhere. I was very sick. The doctor told me later, I was sicker then she realized and sicker then we understood, her words, she was scared for me. The care I received there was amazing. I felt and could sense they were on it. They communicated with my oncologist. I never thought I was in danger but I knew I was very ill. It's funny how fast you get sick with cancer. I had been to the oncologist that day, got good news, my blood count finally jumped from the 7's to the 8's, we were skipping home. I get home, 2 hours later I'm struggling to breathe, shortly after I'm admitted with pneumonia. My port never looked good, but it looked awful. I believe the antibiotics they gave me,knocked everything out. My body was feeling much better. I went home and worked on getting stronger. Every illness you get with cancer just takes you to your knees. Coming back is tough. I felt very very good though. This summer I'm stronger then last summer. However my blood counts continue to be in the low 8's. My kidneys I was told were done improving. After a year, they expect no more recovery. I'm somewhat depressed about that as it's very very difficult living with such bad anemia. I'm rarely rested. I rarely feel energetic. I've Been struggling with pain in my kidney area this summer. Twice I've gone to the er. Nothing shows up. I'm thinking it's muscular-skeletal. It's very painful at times, to the point I cannot walk. I'm using scooters more now when I go to stores. One of trips to the er, I learned my kidney count jumped. Despite being in pain I got excited. That's huge. After a year and coming to terms that I will not improve, I learn I have. My most recent appt. my counts showed even more improvement. I believe if I remain where I'm at, I will be out of the danger zone as far as my kidney function. I'm hoping that if my kidneys showed improvement, perhaps my bone marrow will also. I cannot stress to you, how hard it is living with this anemic condition. I have now forced myself to do things, I force myself to get up, get dressed, get out in the community, go to lunch, take a ride, because dammit if I'm not going to get better, and this is my best, I cannot die in a bed or on a couch. That is where I'm at today. I'm fighting to live my life. I don't talk about it much on fb or even in person, as there is no point. Yes I'm stable with the cancer, but I'm suffering the continuation of effects from avastin. I've also recently had port surgery to remove it. I'm not on iv treatment, it's never healed, I was tired of open holes, so it's gone. I know, I will have another one day, for I will never be out of treatment. I'm just enjoying the break. I continue to get these ugly huge sores,just not very often. They heal, but they leave huge scars. I no longer anquished over those, I'm becoming adjusted to a body full of battle wounds. What I'm not adjusting to is,,,,,, cancer. I cry at the drop of a hat, if I meet someone, if the word comes up, I cry. I never tell my story. I listen to theirs. I have come across many that tell me their story, I just don't share to, that I have it. I don't know why. Maybe it's easier to write about it, then do it physically. It's a word that paralyzes you. It halts you, stops you. I visited my therapist this week and told her I now know I will die never coming to grips with this. I simply cannot. I have seen so much death, I no longer can cry. I've cut myself off of every cancer online group but one. The death, suffering and even the bullshit got to me. I've learned if you were an ass before cancer, most likely you'll remain. I've learned a good majority who quote scripture and flaunt their faith, are the most messed up of all. Women tend to get into cliches, they seem to be drawn to certain things. Most cannot just love and accept and embrace all. My fault is I'm to honest, I'm not into bullshit, I'm not into cliches, I'm not into fake ness. I'm to dam real. Being terminally ill, I have learned even more how precious it is to be more like Jesus. Every day I ask him to help me be better. If I say I love you, I do, I really do. It's not just an empty phrase. If I say I'm praying, I am, and I'm thinking of that person all the time. I ache over the suffering I see. I despise what cancer takes from us. I despise the losses. But,,,, I'm still here. In order to function well, I have to avoid all the suffering. I had to walk away from the game players. I cannot support women that cannot support me. No ones journey is more important than any other, we all should lift each other. That does not happen. I'm in a good place right now. I have several ladies that are real, they lift me up, as I do them. We support each other not just with cancer but with everyday struggles. Despite living with a deadly disease, life goes on. So, yes, it's good to be able to share other things in our lives. We are more then cancer. We are mothers, grandmothers, workers, friends, wives, singles, we are women trying to live while dying. I'm current with my cancer journey but I have more to share. I will blog next on some big things I've done thruout my journey that I believe only god understands how huge these were for me. I want to share my two trips. I still have bucket list items I'd like to do so I'm in the process of praying for financial means to allow that. One, I'd like to go somewhere with just baldy. Just us two. No schedule, no destination, just go. We never have and we need it. Financially it's a burden so god will have to help. I will begin selling my breast cancer candles soon to help with this. We did great 2 summers ago, so hopefully that goes well again. I also use a portion of my breast cancer candle sales to help other stage 4 ladies or causes. I'm ending this, I'm stable, my kidneys showed improvement, my bone marrow has not, I'm severely anemic, and I'm working on doing something with just my husband alone. I will blog next about my experiences with little pink house of hope, my spa retreat, and a huge decision I recently made. This decision showed me, I'm focusing more on living, less on dying. While some don't get it, I don't care. I get it, god gets it, some with stage 4 totally got it. I have to stress, I don't share much on fb, that is why I began blogging again. I may print this out to leave for my children. I want them to hopefully see a woman, who wanted to live with hope, who still had dreams, who despised cancer yet embraced every breath of life. I want them to see cancer may claim my body one day, but it will not claim my soul, my spirit my zest for living. I know, god will restore my body, my ugly sores will be gone, my scars will be gone, I will not have scans anymore, I will not have all these doctor appts, I will be cancer free, I will be in heaven, I will be ok! I want rejoicing at my leaving, I want grate fullness for every gift god gave me. I was able to raise my children, I was able to see many grandchildren, I was able to see some things of our world. Never can I complain. I look forward to sharing the wonderful experiences I've had. I hope anyone reading this is enjoying my journey.
Todays post by Dawn Marie at 1:06 AM
Wednesday, July 30, 2014
You learn so much having a disease that you thought you knew a lot about. I believed most women survive breast cancer, it's not the disfiguring, death machine it used to be. Nothing is further from the truth. Approximently 40,000 die every year. Before we die, we suffer. We do become disfigured, scared, and that's just physically. What it does to our minds, is much much worse. It's the hardest thing I've done, trying to learn to live while dying. Every decision I make even the smallest ones, I'm always wondering if I should, should I travel, what if I get sick, should I buy that, what if I die, should I eat that, what if it feeds my cancer. I've learned and learning, just live. Just simply live. Stable is a good place to be. The best is NED, no evidence of disease. But I'll take stable. I believe it's always lurking anyhow, so just enjoy whatever break you get. I found plenty of things to do to pass my time now that I no longer worked. I put a lot of energy into my candles, cooking and of course doctors. I felt ok, never great. Your brain, or my brain changed. I can no longer read very long, my comprehension is way off, I get frustrated very easy. I was really enjoying being home at first. I truly am a homemaker at heart. As the days turned into weeks, then months, I was getting pressure about returning to work. I anquished forever. Part of me wanted my old life back, despite it being to much pressure, the bigger part of me wanted to close that door, and live out my life doing what I want. I knew I had to make a decision soon. I could not return part time. After doing a lot of checking we learned each day I was gone my ltd was getting smaller as they base it on your current earnings. Well, my time spent wondering what I should do had already cost me nearly 300.00. Sooo, I filed for ltd, with the intent to not return. About 6 months later I resigned. Done. My former life was done. I was now surely on the new path. I continued feeling ok. I was accomplishing a lot during the day. It appeared I was handling my treatment well, all tests were always good. I just never grasped how one could be full of cancer, and yet have perfect blood and immune tests. I began noticing these huge ugly sores all over. My thighs, back, arms. Ugly. They hurt, they looked and felt like cysts but nothing came of them. My oncologist had no clue. He wanted to biopsy one, so I agreed. Now I tell you, he came very close to being punched. It hurt. Ended up being infected cysts. Scars have never left. Not to far after my blood tests began showing issues. I was declining a point each month. I was becoming very tired. This began in January, by may I was a mess. I was down to 8 in blood counts with normal being 12-13. I was exhausted. Next my kidney showed dysfunction. That was quick and harsh. My oncologist removed me from avastin. I felt better but my numbers showed trouble. Next he removed me from the pamamidrate which was supposed to keep the bones strong. I did not improve. I was referred to a kidney specialist. She did a biopsy which showed extensive damage mostly unrepairable. My bone marrow was found to be damaged to. I was a mess. Avastin was killing me. The results didn't show up until it was to late. During my cancer treatment I was taking many suppliments. I believe those suppliments hid what avastin was doing. I was kept on the femara. Soon, I was not getting scanned either as scans themselves pose risks. My last scan showed stable, the femara appeared to be holding the cancer at bay. Now it was time to see if my body would recover.
Todays post by Dawn Marie at 8:28 AM
Friday, July 25, 2014
So going to work those few hours kept me going for awhile. It felt good to reclaim my life. As days went forward, I began noticing the "new me". It was scary in many ways. My reflexes were slower, my brain seemed to miss things. I began to wonder if I was capable of doing this type of work. How can I trust my judgement of transporting children, how can I supervise visits when I wasn't sure I was on top of things? I also had a family who had a child that was quite violent and disturbed, during one visit he lunged to me, was going to attack me. The father was able to subdue him, I called police. That night was when I really realized this job was not good for my health. I managed to hang on for a few months, and then explored my option of long term disability. I had applied for Ssdi already knowing it takes 6 months. Baldy and I attended meetings, got the info we needed and I made the decision to go out on leave. My plan was to return to work once I adjusted to all this. I also began on my own reducing my pain meds. I do not like meds of any kind. My body over reacts. I first went off the morphine. Now mind you, this was horribly scary for me because I could never forget that pain that brought me to the hospital. After I went off the morphine, no pain. Little clearer head. Success! Next up to bat was the oxy. I believe I was taking this 4 times a day. I dropped one dose. Adjusted to that, no pain. Well I had alittle pain here and there but nothing even close to what began this journey. I did not discuss this with my oncologist, I just did it. I then dropped another dose. Still good. I believe I gave my body about 2 weeks for each dose I dropped. I then dropped the 3rd. Still good. Now I was down to one dose of oxy and just naproxen. I was super scared. What if that last dose of oxy was what my body needed to keep the pain in check? I then talked to my oncologist about it. I told him I was going off the pain med regimen. His advice was don't do it. I then admitted I was down to one oxy. He said, then go for it. Dropping that last dose was the ultimate scare. I clung on for weeks to work up the courage. Finally, I said, just do it, if the pain begins ill just jump back on. Sooo, I let it go and began the waiting. I waited, and waited. Nothing. Just a lot more clear head, less constipation, but no pain. One week turned into two,then three, by four I knew it was ok. Now it was just naproxen. That's it. I felt amazing. I would get residual pain in my spine, ribs and pelvic but the naproxen kicked it right out. Naproxen became my best friend. For me, it worked wonders. My scans were every 9 weeks, they showed stability. To this day nearly 3 years later they remain stable. I have to add, and stress, that my never having a mammogram was not the worst thing I did. My breast tumor would not have been detected by a mammogram. In fact my oncologist still does not recommend them. They are not reliable, could be in fact a cause themself of cancer. My tumor was found by simple chest x ray. If you want to be accurate, do a chest x ray or ultrasound of the breast. There truly is to much unsurness with mammograms. I will stop here with my cancer in stable mode, I'm only on naproxen, I'm on disability, and all my tests are coming back normal every 3 weeks. Overall, considering how bad I felt, I'm doing pretty good.
Todays post by Dawn Marie at 7:41 AM
Thursday, July 24, 2014
I'm one who never wants to burden anyone. I feel bad if I cause anyone to change their direction in life because of me. My husband was a burden our entire marriage, a real thorn in our life. He certainly didn't mind! I guess that's the dysfunction you end up with when your an abused child, you don't mind being imposed upon, but you, you dare not impose! I truly did not know, nor do I now, know how to change this path I was on. Every where I went, every time I talked or thought about I cried. Cancer. Words I never thought I would hear. I wanted out of my job but not like this. I went to my oncology appt. I went in there a mess. I met Dr. Frontiera and cried. Cried big time. My daughter was with, my dil. He asked me why I was crying. I told him, because I was dying and I just couldn't get a grip. He asked me who told me that, I told him that's what they told me at the hospital. He said he thinks I misunderstood, baldy and my dil stepped up and confirmed that's what we were told. He said he dosnt operate like that. First, we needed to biopsy the breast as we had no idea what type of cancer I had. He also questioned why they did that to my spine as it wasn't needed. He also informed me that cancer in the bones only, you can live quite long, so I needed to have hope. He spent a lot of time with us, I felt somewhat better, but still could not believe I was now living with cancer. Tests were set up, biopsies, treatment options discussed. We found out my cancer is slow growing, lazy, bones only. It had not eaten thru my bones, just damaged them. We were offered a study to go into, meaning my treatment was free. Knowing nothing, we went with the study. It sounded good, frequent scans, treatment every 3 weeks. And so it began. I was taking femara daily, a pill, iv treatment every 3 weeks of avastin, pamamidrate. Avastin I came to learn was a very harsh drug, it either worked or it killed you. I ignored that because I felt better pain wise, and I appeared to be handling it ok. I was different mentally, I was not the same person. I noticed my speech changed, my brain seemed to struggle. I can no longer read like I used to. I got stable and decided I wanted my life back, the way it was, icky job and all. I went back to work, convinced them I could work, despite being on all these meds, treatment and just very different. I worked approx 15 hours per week. It felt amazing to get back out, get my mind off cancer, and because I was so part time, I didn't have that stress of all those crazy rules. I basically did visits and then computer work. It was very enjoyable. Life seemed, well almost normal again. Like maybe, just maybe, this cancer thing wasn't as bad as they said it was.
Todays post by Dawn Marie at 6:50 AM
Thursday, July 17, 2014
Walking with a limp is best how I describe my life. It's that I've come to a place where I'm tired. Tired of therapy, tired of undoing what was done to me. So, I'm accepting of where I'm at. I'm accepting of myself as wounded, but very highly function able. Yes, I have quirks, yes I'm imperfect, but I'm soooo much better. This week continues with the annoying pain. I'm irritable. I'm still spending a lot of time in my mind about my past abuses. Something is trying to find it's way out. Pain, a lot of pain. I get up one Tuesday for work and notice the pain in my side is alittle stronger. Something tells me, this isn't going away. It's staying. I get ready for work, actually crying to god that I'm just done. I want out. Today will be better though because I go to court for a case and I like court. It's a change of pace. So off I go, me and my annoying pain. I get to court, find my day is ok. I find myself staring out the window. Just being. My day is done, I rush home because most night I make candles right after work. I change, get to making them. I love it! Love. As I'm making them I find the pain getting worse. It won't be ignored anymore. Soon, I'm slumping around the kitchen holding my side. I'm telling Greg something is wrong. I keep finishing the candles. Then, I begin to cry. The pain has now crossed a line I cannot tolerate. I finish up, tell him I have to go to the hospital that something is very wrong. He says ok then goes works on his computer. I hop in the shower sobbing holding my side. I knew I was not coming home. I knew I was in deep shit. I knew my life was going to change that night. I did not know why, how or when but I sensed something far bigger and worse was about to enter our life. I got out of the shower, just hopped in my car, didn't even call Greg. As I'm on my way to the hospital, I call them. I tell them I'm coming in a white Kia,I will not be able to get out, that I need help. I get there and by golly there were several people waiting outside. They help me out of my car and I begin screaming in agony. I'm screaming like a total nut. I get in there and just roll into a ball. I'm yelling all kinds of things. The doctor asks if I'm being abused. I tell her I work for the county, I know abuse, I'm not being abused, my body is in pain I've never felt before and I cannot take it. After that, I'm a blank. I have memories of things but no memory of the near 5 days I was there. I remember them pounding into my spine. I remember hearing cancer. I remember flowers. I remember hearing dying. I remember telling a doctor to leave my room because he wanted a hug after he told me I had 6-12 months, go home take a trip. I remember my family being brave, but I could tell they had been crying. I remember telling my oldest son take my beloved Kia because I don't need it. Funny, when I got home and looked for my car, he had taken it! He lives a few houses down from us and I see my car in his driveway,lol. That's about all I remember. Oh I remember the pain getting controlled each day. Morphine, oxy, naproxen. They became my new best friends. I received flowers from one son, then came two, with a car that said, you deserve two! That is what he continues to this day, flowers in twos. If he's low on money,meh will clean my house! My kids rock. They absolutely rock. My one daughter holds it all in. She is like me in many ways. She is so pained. I know now, the cause of my pain. I have been diagnosed on September 22 2011, with stage 4 terminal breast cancer. It is in my bones. I don't really feel anything. I'm to numb from all the drugs. I'm also carrying guilt, as I never had a mammogram. I'm also hearing words I've never heard. Metastatic. I'm about to learn what really are the facts with breast cancer. It's nothing like I thought. I'm released from the hospital. I go home and try to get a grasp on my new life. I'm sick. I'm in pain. I'm dying. People are coming to visit. My mom even came. It was very awkward. Everyone believed I was dying. I still did not grasp how sick I was. I was just wandering. I got my oncology appt set up after some adjustments with my insurance. I was originally told I would be seeing a doctor in my town. He came to visit me. He felt he could get me 5 good years. Now mind you, no biopsies had been done. They did try to get into my spine for what I do not know. They needed to biopsy my breast to find out my type of cancer. When I got home and found out I needed to go to a different doctor,mi set my appt up. It was about two weeks out. I remember feeling, I'm full of cancer how can they wait? I was happy my pain was gone. I had residual pain, but nothing like that night. I just waited. I was getting tons of visitors. People I did not expect. Meals, food cards, it was overwhelming. It made it real. I was very very sick. My life was not the same. In 24 hours I became a terminally ill woman. All that I knew, my dreams, my goals, my plans, it all stopped. How do you go from living to dying? How do you stop walking the road of life, and now walk the road of clinging to life? Someone picked me up, placed me in a dark woods and left me. I see me standing there, looking all around for a way out. I'm lost. I'm scared. I'm confused. I'm sad, so very very sad. My sadness overwhelmed me. I felt as if I'd just let everyone down. I'm now a burden to my family. I'm now a burden to baldy. I'm sick, very sick.
Todays post by Dawn Marie at 8:59 AM
Wednesday, July 16, 2014
Each day, well it felt like each day, I woke, getting ready for work, literally begging god to help me find a way out. One particular week, I noticed the beginning of a small, never ending, slight pain on my left side. Annoying, nothing more. While sitting in our hot tub at night, I floated, touching my ribs, feeling what felt like lumps. I quickly stopped touching that area. I went back, yep, it was lumps. But, I decided it had to be some sort of body part.
I had my regular yearly check up in sept, the beginning. Everything went well, urine, blood tests all good. I got the usual lecture about having a mammogram, I left. I never had a mammogram, never would.
This particular week, this pestering nuisance pain stayed. I noticed while driving I shifted often to see if it would help. It came and went. At work, I just got crabbier and crabbier. Some of my work relationships disintegrated. Well, one. It had been a slow boil for awhile. Looking back I think each of us had valid points, each of us had stressors, but my newness of telling it like it is, brought it open. I was slowly learning to tell people when they piss me off, when I felt wronged, when in didn't agree. I was slowly learning to speak up. Things had been going on for awhile, things being said to my boss, about me, things being said about other employees, that I felt were untrue and set ups for definitely trying to get someone fired. Also, I didn't like being asked to do things, they were not willing to do. Yes my job description was different, but we were so overloaded, each of us at times needed to do more. I did my more, but I was tired of some who passed the buck. Anyhow, it was not customary for me to stand up for myself. All my life I've held it in. I've taken the crap. I boiled inside. When I did stand up, I sounded like a nutcase because I took it for so long. I began thinking back to my childhood, my parents abusing me. The police laughing while I told my story of being molested by my father. The days of being served my meal thru a slot in the door because I was a runaway, I mean, why would I run away from a home of horrors? The days I finally got put into a foster home, get into high school, only to be shun, teased, bullied, by my peers. It was funny I was in foster care. It was funny I had little clothing, stunk, etc. I became the joke. I looked back on all this, the center of my pain. But,,,,one day, I took a job. I worked. I taught myself how to fix my hair, wear make up, I bought clothing. I returned to high school, with the guys wanting to date me! I joined clubs, I knew I was pretty. Not only was I pretty, I was nice. I was just a nice, quiet, sincere girl. I didn't get into the drama, I didn't play games. I just slowly began to live, to have a voice. My graduation to me, was a day again like my Kia, that only god understood. No one in my birth family had graduated high school. No distant relatives, no one. I almost quit to, as I grew very tired of studying, working to pay rent, etc. but,,,,I held on. I cried that day because despite all odds I did it. My marriage wasn't to far after high school. Of course because I wasn't fixed from all my childhood damage, my marriage was very unhealthy. Add to my inside pain, 20+ years of severe dysfunction. I had my 5 children, I kept some distance from my birth family, but hey, I still allowed some abuse. I'm jumping all over here, I hope you keep up! For some reason, this particular week, I was looking closer at my life. My childhood, my marriage, and now a job where I felt the same feelings of mistreatment. Frustration was huge for me. Now I'm not feeling well and I'm old, tired and dammit I'm going to speak up. I did many things those years to "fix" my life. Counseling, divorce, move. It all helped. I finally got to a place though that I decided, I would now walk the remainder of my life with a limp. Not a huge limp, but a limp. I remarried. We lost everything. Our kids hurt. But, we fought to rebuild a healthier life. It was and is but it's never going to be what it should have been. We are both wounded people, and trust is very hard to find.
Todays post by Dawn Marie at 11:53 AM