nothing feels the sam

So, the cancer has moved into my brain,which makes evertythinhg weird. My hands don't really talk to each other the way that they used to ad typing doesn't work quite right either.I have had to reset many passwords. Melanie has helped a lot. Melanie makes most of the food of us. She makes wonderful soups and cookies that  I can eat. She also made a rice dish that had meat and fruit and was wonderful. having a dietary   restriction at the holipital has gone a little better  than expected. after radiation there is a reck will get  mr  gluten tree food if I need it. I am normally an expert type but not these days.

Jonas has been the rock holding down the house.

Vanesssa has helped keep the sanity. my little house has started to buzz.

Jonas is organizing s little benefit for me at the afru gallery.

it's a long stretch but really want a bath so that I can lay don' and not worry bout hitting myself on anything.
it is unbelievable how long it takes to type for now, more later.

Much love and light to you all who help me wp much, escecaillly now that I need it.

There is lots to say here but I am moving on. I do not know the history

I love honey and would love to try my hand over here, maybe tin womwhwlp  ;0
xoxoxo

Adjustment

Lynparza took quite a lot out of me. I had severe fatigue and some nausea. I felt really disconnected from myself. I had a couple of dizzy episodes and I felt so tired that it was sometimes hard to drive.

That was not an ideal time to go back to work but I must say that place is full of kind, compassionate and supportive people.

Still, I took 2 days as vacation days this week to try to get things under control. My boss did not encourage me to user PTO but I feel much better for having done so. DTNA will definitely allow you to take advantage of their offerings at least to a point but part of what I like about working there is that most people don't.

First I took 2 days off of my pills (per my doctor) and then I reduced my dose from 16 pills a day down to 12. I feel so much better. I hope that this is sustainable and that I can gen on with having daily activities again. I really miss dancing. I do also miss being more productive at work. I have gotten a few things done, but is miss the normal grind.

The real test will be if my cancers shrink. Unfortunately, I don't have reliable tumor marker in my blood do seeing my nipple clear up should be my first hint. They will also probably do another test in  month or two. They may also do a brain scan before that. I had a couple dizzy spells and they want to do a brain MRI to make sure that nothing fishy is going on up there.

I got a flaming heart from a recent art show at the AFRU gallery.

Much love and light to you all. <3

Got it

My insurance is actually covering the fancy new drug Lynparza. Yay! It is ordered through a specialty pharmacy so it was delivery to my doorstep via FedEx today. I got home from work around 3 and took my first 8 pills. I also took a lorazepam which helps nausea and anxiety. I might not experience any nausea but with most meds I have found that I get the worst side effects on my first dose so I decided to be proactive.

I have been working part time all week and it has been going well. I need to establish a new routine, though. I keep forgetting to take my pain meds and then I wonder why I don't feel great. Oops.

My skin mets have been getting worse and they are sore and gross so I am hoping that the new drug improves them quickly. I also still have pain in my sternum. So, I'm on a slightly higher pain dose than I was 3 weeks ago. If all goes well then I'll be able to reduce my dose again soon. Luckily I tolerate the drugs pretty well. At least now that I eat prunes every day.

Lynparza

So, I might be able to get Lynparza from a specialty pharmacy and have my insurance cover it. The drug is approved by the FDA if you meet a certain list of things and I actually qualify, we think, when we go through the list. This is definitely in the gray area, though. I will know more tomorrow. I am hopeful that I'll get good response with this and am looking forward to taking a pill instead of infusions.

I also am officially going back to work tomorrow, starting part time for the first week and then back to normal after that. I have missed my coworkers and the work that I do. I told them that I was planning to work from home tomorrow to get my paperwork in and done and to start to try to catchup and setup meetings for getting up to speed on things.

I had thought that I would have to be off pain meds before going back to work but after speaking with HR and becoming familiar with my situation and how meds effect me I have decided to not wait for that. I have adjusted to the meds and I feel like I can contribute at a normal amount with what I am currently on. Things are never going to be like they were before I was diagnosed but I'm ready to move on with my new normal.

Yesterday I went to the ER with severe pain in my shoulder and in my side. The pain had lasted for about 12 hours and felt something like charley horse and while I could make it lessen by keeping still in a relaxing position many movements would take the pain right up to a 10 on the pain scale. I couldn't even talk. They gave me  IV pain killers and anti inflammatory meds and did random tests. They decided that I don't have a blood clot, I don't have an electrolyte imbalance, I don't have any heart, kidney or gall bladder issues. Maybe it has something to do with the increase in cancer in lymph nodes near where the pain is. Either way, the sent me on my way. In talking more to my oncologist she talked to me about various prescription drugs that are already in medicine cabinet that I can use to try to help this situation if it comes up again. I really have quite the stash at this point. I really appreciate it that she educates me and gives me all the tools that I might need to be able to help me deal with all of the nasty chemo, drug, cancer side effects and issues. I seriously love my medical oncologist.

The work that I have been doing with mediation was a significant help in dealing with my severe pain. Panic

I also got the results of my PET/CT scan. I have progression in breast, skin and lymph nodes and now also have some action in my liver that wasn't there before. Mostly bad news, but it is good to see that my breast/skin seem to respond the same as the rest of me. We will continue to look at the issue as one problem for my whole system.

Melanie and Bradley have been an amazing support for me. The two of them did transportation to and from the ER and gave me sweet, gentle reassurances, love and support. Wow! I am so happy to have them in my life.

There have also been many others that support me as well. I am overflowing with love for my people. Jonas, Vanessa, Sarah, Erin, Erica, Lisa, Michael, Ryan, Arlene, Jill, Lina, Mom, Mary...The list goes on.

Drug Update

I'm still on the same old chemo for now. It keeps me stable unless I take the prescribed week off so my doctor is keeping me on it until we can figure out what is next without the normal week off.

She is working on getting me a new drug off-trial. Right now this drug is only available on a trial because it is not yet approved by the FDA. What this really means is that my insurance won't pay for it until it is approved. In these cases if a drug is very promising for a stage 4 patient it is possible to ask the drug company to give it to me for nothing for compassionate use. I can't get on the trial because the trial has a rule that you have to wait 12 months after your first line treatment, which for me isn't until January 1st. My doctor met with the drug representative this past Wednesday and they seem to think that we'll be able to get the drug.

This drug works with your DNA and has specifically shown promise with patients who have the BRCA gene. I have BRCA 2. It will be nice to take a pill instead of going in for infusions. It still has some of the same side effects: fatigue and nausea. The type of drug is a PARP inhibitor and the brand name of the drug is Lynparza, generic name is olaparib. We're not sure how long it will take to get the drug so I might be on chemo for a few more weeks, but we won't take any more weeks off. Hopefully my blood numbers stay good enough.

Also, I'm going to be getting another PET/CT scan next week, which will show us how my lymph nodes are doing.

Change

My current chemo regime is not working. The cancer is stable right after I get the chemo but during the break that is needed as part of this regime my cancer has too much time to grow back. I have been very emotional this week about it. Also, it means that the pain in my sternum is back. Boo!

I go to see my oncologist tomorrow to figure out what is next. Hopefully we can get another treatment going right away because the skin on my nipple is pissed and I'm in pain.

Today I realized that I will get better. There is a drug out there that my cancer will respond to. Hopefully there are many drugs. I know that there is currently no cure but I also know that I am not going to die from this soon. I have been connecting with other women who have stage 4 cancer and I have learned a lot. When one drug stops working on your cancer you move on to the next drug, which I knew already. What I didn't realize is just how many options are out there. I read about a woman who is about to start her 21st drug. Failing my first drug stopped feeling like a big issue.

Even with the increase in pain and thus an increase in pain killers I am full of energy. I'm not sure what wiped me out before. It could have been the radiation or it could be that I have adjusted to the drugs I'm on.

Last week I made it to dance class, but this week I did not. Even though I missed class this week I was able to practice at home. I missed class because I was struggling with dressing the wound on my boob, I was low on stamina and I wasn't medicating enough for my pain.

I figured out that I needed to use a wound dressing instead of gause a week or two ago to cover the wound on my nipple but I still didn't have a great way to keep the dressings on. Tape is uncomfortable. I only had 1 bra that works OK and one that works, but is too tight to be comfortable on my skin mets (breast cancer on my skin) below my boob. I purchased a new very stretchy bra and also realized that one of my bikini tops is very comfortable. I thought that the ties in the back of the bikini would be uncomfortable when I laid down but that wasn't a problem at all. I even wore it to sleep one night and it worked great.

Vanessa gave me a big overstuffed chair and I have created a little reading area in my back room. (I'm not sure what to call this room - 2nd kitchen? mud room?) This room gets a ton of sun so it's a nice place to read or hang out during the day. Marcel is a big fan of the new chair as well.

Melanie trimmed up the back of my hair to keep me from having a mullet.

Success

Well, my chemo this week was a success. I got a private room again because being in the office makes me super emotional right now. I've been happy and bubbly 80-90% of the time outside of the doctor's office but when I get there I tear up when they ask me about anything. I think this has actually worked out in my favor since I keep getting special treatment from it. This week the social worker took some time to talk to me, since my doctor was running behind. I feel so cared for at this clinic.

My nipple is still inflamed and my sternum still hurts, but things feel different I am hoping that it's things breaking down and being cleared out by my system, but who knows. It does feel like there is lymph movement going on. My friend Melanie gave me what is basically a 20 gallon soft sided bucket that I put in my shower to take epsom salt baths and I have used it a couple times this week. It sounds weird but it actually works pretty darn well.

This week I have felt better than I had in weeks. I still needed a lot of down time and I wore myself out on Monday so I was pretty useless on Tuesday. I got some chores done at home and did some socializing, which felt great. I finally stopped by the office and picked up my computer that had sat locked to my desk for 8 weeks. It was fantastic to see some of my coworkers, although I didn't get a chance to see everyone I would have liked to see. I might try to go in again next week. I asked my boss about the process to transition back to work, although I think it will be a few more weeks before it actually happens.

I was able to catch up with a few other people this week as well and went for a very short hike in forest park. Overall, a great week.

Ouch!

Because my last chemo was cancelled I ended up not getting chemo for 2 weeks. The cancelled chemo was right after my normal week off and unfortunately the cancer went crazy in that time. My nipple got sore and raw, the cancer under my breast and on my lumpectomy scar grew and the lymph nodes in my chest became extremely painful. I've had a pretty hard couple of weeks. I have spent most of my time sleeping.

It is really strange to me to be able to see the cancer on my nipple and under my breast. It smells weird and looks terrible but it is useful. I do not need to get a scan to instantly see how I am responding to treatment but it is also hard to have it right in my face to watch and monitor. It is also strange how much my cancer hurts this time around. Last time when I had a large lump in my breast the cancer itself was never painful.

I had chemo last Thursday and hopefully things are getting under control. I am actually looking forward to more chemo this week, which feels weird because in the past I have dreaded it. My doctor said that if my blood counts are off again that I'll get a shot that ups white blood cells rather than miss another session.

This past session I had the delight of having my friend Lisa visit with me AND they happened to put me in a private room due to a shortage of chairs in the main area so we had nice lighting and a private space to have some fantastic conversations. She also helped me navigate generic pain med branding, so I happily have the better generic version of my pain patch.

I have been trying to stop by work to visit with folks there but last week it just wasn't in the cards. Hopefully this week will be better. 

Jonas took me out to see a little live music on Halloween and I enjoyed us dressing up as the black queen from chess. Jonas was king.

Chemo cancelled

This week I went in to get the first chemo in my second cycle of the chemo protocol that I am on. However, my white blood cell count was too low. Also, my potassium was low so they gave me a 2.5 hour IV drip of potassium to sort that out. They didn't do anything yet about the white blood cells. It's possible to get a shot that will quickly raise the counts and I did that shot during my first round of chemo last year, but for some reason she decided to not prescribe that for me this time.

This means that I haven't had any chemo in over 2 weeks and I think that my cancer is growing again. There are two new spots. One that is just below my scar an another little spot that is on the top of my boob and looks like a bug bite. My nipple is also still sore.

In general, once someone is stage 4, like I am, they don't talk about doing surgery unless it makes the patient more comfortable or the tumor is particularly large so at this point we aren't talking about any surgery.

This past weekend I went to the coast with the AFRU crew, which was fantastic. They brought the party to me when I was lethargic and I enjoyed some time around a fire on the beach.

Also, my mom was in town for almost 2 weeks and while she spent much of her time going through her things to figure out what to send on to Michigan we also enjoyed several nights of catching up and watching movies. She also helped to brighten up my new place by painting my dance room and my dinning room white. There will be more painting to come. Although, it might be nice to keep the back living room dark an improve it's theater like qualities.

My nipple is falling off

Well, not the whole nipple but big chunks of scabby skin are falling off, so it seems like it. It is incredible to have cancer on the outside where you can see the effects of chemo. My scan didn't say how big my internal lymph nodes were from the cancer inside of them but it is crazy to think about how my body has to get rid of the cell die off that is happening there from the chemo as well. My chest where those nodes are is still really sore and painful, but hopefully the same thing is happening there that is happening on my nipple and my system will dispose of the dead cancer waste and the pain will go away. My doctor expects that I'll feel quite a lot better within another couple weeks.

I missed dance class this week because of poor planning. I was supposed to change my pain patch in the morning but forgot to and by the evening when I finally realized what was going on I felt pretty crappy. My mom is in town so we got Thai take out and watched movies instead, which was lovely. (except that the Thai place closest to my house has terrible tom ka soup - I'm trying the place further down the road next time)

I've started to miss work. My plan is to go back on at least a limited basis once I'm off the narcotics. Speaking of narcotics. I am REALLY missing drinking hard cider. I'm happy that this chemo doesn't make things taste terrible like my last chemo did so that will be another thing that I'll get to enjoy once I'm off the narcs. I got to say hello to some of my favorite coworkers last week when I stuck my head it their favorite watering hole. I'll probably try to make an office visit this week or next.

This past weekend I wore my new elf ears. They were super easy to put on and also comfortable to wear.

2nd Chemo

Today was my second chemo. I'm on a 3 week cycle where I get gemzar and carboplatin together on week 1, just gemzar on week 2 and then I get a week off. So, yesterday was just gemzar, which seemed to have fewer side effects then when I did the two drugs together.

The nurse made an absolute bloody mess putting in my IV but was it was strangely super gentle. However, the amount of blood that was all over everything started to make me a little woozy. This is after she started cleanup:

I'm still on the heavy narcotics for pain where my chest tumor is but there does seem to be a response to the chemo (mostly noticed on my nipple) so hopefully I'll be able to reduce that soon. I've been playing with marijuana a little, too, to help with pain, nausea and appetite. I have unintentionally lost over 10 pounds.

My sister was here for a long weekend, which was great. She helped me pull off a successful housewarming party.

I danced with Scarlet Thistle for the ATS world flashmob on Saturday at Multnomah falls. It was a beautiful and drizzly day and I had a great time dancing.

Biopsy Results

The results are in - the nipple is cancerous.

That means that I start chemo tomorrow. I'll be on a cocktail that is different than what I was on before so it's likely that I won't lose my hair and it should be, in general, much easier to tolerate. This is a regime that they sometimes keep people on for a year or more. Whoa.

Logically this shouldn't be significantly worse than the spread that I already knew about to distant lymph nodes but it's really hard to have more added on so quickly after being diagnosed. Emotions aren't always logical.

The doctor is happy that she has some tissue that will be easy to monitor to see how I respond to treatments and is also glad that she could get a biopsy because it would have been very difficult to biopsy the lymph nodes in my sternum. I love how she gave me the hard news and then very quickly shifted to get down to the business of treatment. She promised that I'll feel better within a month.

I went to dance class last night and it felt good to move my body. We'll be doing a flashmob this weekend at Multnomah Falls, which I am really looking forward to.

Biopsy Quicky

The doctor who performed my biopsy said that a skin punch was much less painful then the core needle sample that I had last time. Whoa man was she wrong. She injected something to numb me up but about 3/4 through her doing the punch we found out that something that should have been numb was not. I jerked and yelped and she jumped as well, but then it was done. Then I made the big mistake of looking at the little hole in my nipple. I got woozy, sweaty and then tossed my cookies. Oops. No more looking. She gave me a couple of stitches and after much worrying about my woozy episode, taking my blood pressure to make sure that I had recovered, she sent me on my way.

The Radiation Oncologist seemed certain that my nipple was cancering but the surgeon estimated a 50% chance or so. I should get the results on Tuesday or Wednesday.

Afterward I bartended at AFRU for a quick shift. It was nice to get out and be social since I have been a hermit all week.

Nipple

Showing my breasts and talking about boobs, nipples and poop now all seem like normal everyday conversation to me. I almost pulled my shirt down at dinner the other night to show off my crusty red and bumpy nipple but caught myself. I do that so often with treatments and doctor visits for so many different people that it now feels socially acceptable.

That nipple has been giving me trouble for almost 2 weeks now and while they thought it was not something to worry about at first they then decided to be very worried about it. Now it seems to be improving. They are doing a biopsy tomorrow so I should know for sure by early next week if it is cancerous or not.

When the radiation oncologist decided that my nipple was cancerous she decided to up my radiation treatments to twice a day. That totally wiped me out. I am now done with treatment but I have been sleeping an absolutely ridiculous amount. My cats love it. The last time I did radiation it took months to recover, but that was 60 treatments and this time was only 10 treatments so hopefully the recovery is faster.

Yesterday I had my first float in a sensory deprivation chamber. It was awesome and both relaxing and stimulating. I went in and out of consciousness and had dreams about my future. My muscles relaxed, although I think that next time will be better. I still had some worry that my head would go under and I jumped at every weird sound I heard. I bought a starter 3 pack of floats. Tomorrow I get acupuncture.

Progression

I am a breast cancer survivor. I was diagnosed with stage III breast cancer in September 2014 and went through treatment until April 2015. This is a long post to play catch up to where I am at today. I've never blogged before so I'm not quite sure how this will unfold but I decided that it was time to put my story out there.

On September 12th (2015) I performed with Scarlet Thistle at the Huckleberry festival in Washington. I have admired Colette and the entire Scarlet Thistle troupe for some time and felt honored to be invited, along with 3 other women from our class, to dance with them. I had been feeling some pain in my chest off and on for about a month and it had gotten slightly worse the week before this performance. It was mainly when I would cough, sneeze, hiccup or when I would get up from laying down that it hurt and it wasn't interfering with my dance. That changed during the performance. The pain became excruciating and even taking a deep breath hurt. We finished the performance and once off stage I broke down and started to cry. The ladies in the group were incredibly kind and sympathetic. They made me laugh, hugged me offered to help me in any way I needed.

Early the next morning, September 13th, I went to the hospital because I just couldn't tolerate the pain. The doctor suspected a blood clot because of my history of radiation and he did a CT scan. He did not find a blood clot. He found a tumor in the lymph system behind my sternum. He suspected that it was a progression of my breast cancer. He sent me home with pain killers and said to follow up with my oncologist. I had driven to the hospital but I couldn't drive home with the meds I was on so Melanie, Bradly, Norah and Brian came to pick me up and Bradley drove my car back to my house. We spent the day together while I called my family, picked up prescriptions and processed what this meant.

The following week was all appointments and tests, which confirmed that my cancer had spread to distant (non-breast) lymph nodes. They started me on radiation treatments right away to try to shrink the tumor in my chest that was causing me so much pain. I officially took medical leave from work, which I didn't do through all of my previous chemo, radiation and surgery.

I decided to still go on a retreat my friends Sarah and Josue the next weekend and I am very glad that I did. The material in the program we went to was nourishing to my mind and spirit and it was comforting to have friends close.

On September 25th I had a delightful performance with the newly (any possibly impermanently) created troupe called Red Velvet Tribal organized by Margaret and including Kizzy and Cindy. It feels so good to still be able to dance, even if it is on pain meds.

On September 26th I started a belly dance intensive run by Rachel Brice called Cultivation. Rachel is a huge inspiration for me and my first workshop with her sparked a deeper passion for me in belly dance. When I took her first intensive in 2014 I went from being someone who took dance classes to identifying as a dancer. The community that she has cultivated is incredibly loving and supportive and I am delighted to be a part of it.

On September 28th I went in for my radiation treatment and saw my radiation oncologist. I had some changes to my nipple that were bothering me. The doctors had looked at it the previous week and didn't seem too worried but things were changing in the way it looked and the doctors now think that it might be cancerous. So, they upped my treatments to twice a day so that I can move on to the next treatment more quickly and I will be having a biopsy on Friday.

With a heavy heart I realized that I couldn't stay in Cultivation with the additional treatments, tests and doctor visits that are needed. I am hopefully that I will be able to participate in the next session. I opened my home to some dancers from out of town that are in the intensive so although I can't go to the classes I still feel the deepening of my ties to the community.