Been 2 years!

Crazy that I haven't posted in 2 years. Those that follow me on Facebook know I remain stable and living my life the best I can. It will be 5 years on Sept 22.  I'm not going to talk about cancer. I'm still making candles. I love it. I've added soaps, facial care, laundry care and tons of other products. I love it! It helps me pass time but also feel productive. I'm up to 9 grandchildren now. 7 girls, 2 boys. I often wonder if I should get back to blogging. I still don't know. I think I'll go visit those still around.

3 years approaching!

I have so much more to write about, like why the title of this blog. I'll get to that, just not yet. I'm still struggling with refilling my blog, thing is it's not cheap and from my last experience I'm feeling burned. It dosnt sit well with me paying for something, it disappears and my emails go unanswered. Not good business! Anyhow, Sept 22 is approaching. This will be the 3 rd anniversary of my diagnosis. I was supposed to be buried according to that doctor. I'm here, struggling but here. I do not talk much about my aches and pains of daily life living with cancer in just about every bone I have. It's not fun. I try to focus on living and enjoying life, putting cancer on the back burner. I don't want to give it to much attention, lord knows it likes it!  Sometimes though we must. Because it screams. So, yes there are days I remain in jammies in my comfy bed. That is very hard for me because I hate laying around. I like to be active, to accomplish things. Every day is a new goal of something for me. Sometimes after I accomplish something, I listen for the applause, nothing. Why is that? Anyhow I'm still here. I'm happy to be. I'm tired, I'm achy, I'm still sad. I continue to feel lost, that same feeling has never left me. I'm placed in a dark forest and left, how do I get out? Reality is, you don't. So you must adapt to your new surroundings.  I continue to hope not for the cure, but for safer and better treatments. I'm one who believes there will not be a cure. That would mean less money for the greedy who feed off of terminal people. I've gotten over my anger and frustration with these organizations that steal from people in the name of finding the cure. I've educated my best about how the money is spent, and yet, yet, people continue to give to these places. All around you, yes you, women and men are dying, suffering, not getting meds, not having what they need, losing their homes, because the millions, possibly billions by now goes into thiefs salaries instead of helping those afflicted. I would hope people learn, but for the most part they do not. I think we give because it feels good, like we did something good for the world. We fail because we don't ensure the money goes to the correct place. I've left most online cancer groups because I can't handle the constant death, and I also can't handle the healthier women behaving like high school bullies. I expected sincere behavior from those dying, and far to many are hypricritical and cliche.  I cannot handle that, I end up telling them off. So, I left. After learning I'm dying, the gloves came off , no more games, favorites, etc. I just love all, except all, want to support all. I continue to do, just in prayer.  My hope is that I remain stable. I want to live. I have more of life I want to taste.  A few more places to see.  I pray god will grant me this time.  Living with cancer is hard.  I do my best. Pray for me, as I continue this journey.

My trip to buxton- little pink

This is the home we stayed in for a week. It's located right on the sound, so it's great for paddle boarding, kayaking etc.  This home was the most beautiful place we've ever stayed in or had the pleasure of even being in. When I first became ill, you remember I was told I had 6-12 months of life. While that was challenged a few weeks later, in my mind, I had to see something out there. We just never traveled much, just did not have the money. I began searching right away for free or help with vacations for those terminally ill.  I came across Little Pink Houses of Hope. This was the only vacation offer I found for adults with cancer. All others you have to have children. I applied immediately as there is a wait list. I was informed we did not make it that season 2012, but we were placed on a wait list. Very soon after I was contacted again, saying we were picked if we could go. I was in heaven! All we had to do was get there. We made the decision to drive as I don't like flying. This trip was set for October, which I thought would be nice, extend our summer alittle longer. We would be staying with 6 couples, including us. Only one other lady had stage 4 cancer. This was Little Pinks first couple retreat.  Each couple is assigned a volunstar, meaning this person ensures all your needs are met. Their goal once you arrive is to make sure you spend no money, get pampered, try to forget you have cancer. We had a wonderful drive there, stopping along in Tennessee to meet a friend with my cancer. When we arrived in buxton, our breath was taken away by this home. We were greeted, showed our room. Each couple had their own room with their own bathroom. The rooms had beautiful fresh flowers and a gift bag awaited each couple. It was so intense, it was hard not to cry. I cried a lot, a lot. Never in my life have I spent time with people who truly took pleasure in waiting on you. Meals were cooked, snacks, any craving you had was fulfilled.  My port was causing me trouble and I left messes while sleeping, they changed our sheets without us even knowing. Activities were available, a date night out, shopping. We were given a gift card to shop at a local store. Date night was amazing overlooking the ocean.  Beach days planned. Paddle boarding. I did eventually try the paddle board, despite my not liking water, despite my being afraid of my bones.  I cannot ever share enough how good for us this trip was. We don't travel, so seeing the ocean, the beaches, the drive was so overwhelming.  I learned about IBC this trip. Inflammatory breast cancer, another deadly cancer.  The couple that owned this home, were fairly young, early 40's I believe. They made the decision to donate this home to cancer patients once a year to enjoy, as the wife herself was suffering from ovarian cancer. Her goal was to be our cook for the week and spend time with us. Sadly, she passed during this week. She fought for many years, I believe 7.  We felt her presence in the home. Before she died her and her husband had committed to donating their home again, for another retreat. They were in touch with little pink and knew how much we were loving their home.  Sleeping near the ocean was very spiritual. Listening to the waves was soothing. Meeting these people was one of our greatest gifts ever.  Little pink takes excellent care to ensure cancer patients feel freeing of cancer for a short time. It's the best gift to forget, the word cancer.  I had one of my god stories here. I don't wear much jewelry, don't have much. But when we got there and I was getting ready for date night, I thought, I wish I had brought a bracelet.  I sat outside praying while waiting to go. I was begging god for answers to my journey, would I have time? I'm not ready to leave. Greg came out shortly, we got in the car and he hands me a box. Now knowing him, I know he didn't buy me anything, lol, and tells me a volunstar got this for me today. I open it, it's a bracelet!  A bracelet that says, miracles happen. I started crying. I took that as god telling me I will have time, and that he cares of such small things here for his people, that he provided me with a bracelet I forgot to pack!  Amazing. This trip will never leave my heart. The other lady who had stage 4 has passed. She was a real pink lady, loved all pink, wore tons of bling, perfume. The opposite of me. I teased her that I could smell her perfume an hour before she came into the room. She was hurting then. I was not. I was just weak.  If you are reading this, and you ever want to donate, please consider Little a Pink Houses of a Hope. I know how we benefit from the donations. You will be ensuring either a couple, or a family has one of the best weeks of their life. At the end of the trip a photographer takes photos and each family receives these once home. I know those who have passed on, their loved ones smile each time they look at those photos. It's a memory of pure joy. Nothing beats a sick person, forgetting they are sick and getting up on that paddleboard. Nothing beats having a wonderful dinner overlooking the ocean.  My trip with little pink still makes me cry, a true gift.

Onward,

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.

Continuing

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.

On we go,,,,

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.

Continued,,,

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.