Another Year Gone By

Dear Diary, December 31st is here...

Cardiac stuff over. The bottom line is, though there are heart changes because of chemo, it's not enough to stop a life saving therapy. I have normal sinus rhythm, the walls of the heart look good. Some enlargement, murmur, and regurgitation, but as long as those other two things are good, I'm good to go. That's it. I'm way good with this. We do another echo end of February just to check on things. Started my chemo back up on Tuesday. 

Of course, I wonder... am I ever going to feel good again? I never do... somedays I function better then others, but never feel good. The neuropathy (I say 'the' instead of 'my' because I don't want ownership of this) has slightly kicked up a notch too. Where's that radical acceptance??? I am going to read Radical Remission and focus on getting better... stronger. The Cardiologist did say the shortness of breath was likely the overall toll of cancer and treatment, chemo fatigue... sedentary behavior because of the chemo, fatigue, pain, cancer... and... you get the circle here. 

So, the next few months will be about trying to get stronger... in spite of myself. A very slow process for sure and frustrating, but I will persevere!

I've been in a surreal subterranean lifestyle... it's like... huh, wha....??? 2014, 2015... where did they go? I can only focus on today and have a goal for the immediate future, without thinking too much into the future. So weird.

Here comes 2016, may it be kind and gentle to us all.




Ramona

Luggage

I mean... baggage... 

Yes, but...

I saw this on a friend's Facebook page today. Yesterday I was bummed and bemoaning that I was afraid I'd never feel good again. It's been so very, very long, you see. 18 months, and counting. Had some meltdowns lately, pain related, and frustrations with doctors and the gov'ment.

I ask the cosmic consciousness and God for a new way to look at things, to give me a new view. The seeds are being planted.

Radical Acceptance: "Acceptance means you can turn your resistant, ruminating thoughts into accepting thoughts like, "I'm in this situation. I don't approve of it. I don't think it's OK, but it is what it is and I can't change that it happened." -M Linehan

Radical acceptance means complete and total acceptance of something, accepting reality. It doesn't mean you have to like it, it just means to recognize it for what it is and accept it.

Practice, practice, practice! Yes, dang it, even at 61!

All my tests are done now, the new Echo, a Cardiac MRI. I'll find out where I am (the heart) on the 22nd. My chemo is being held, last dose was November 20th. I do feel a little better without it (breathing wise), but not by leaps and bounds. Still short of breath. Depending on the news the next big decision to make will be to continue with the chemo or not. I'll tackle that when I get to it and try not to future trip.

Meanwhile...

So much breast pain, and right armpit pain. Very tender. Sometimes can't sleep. It has slowly increased since stopping the chemo. What does that mean???? Hoping for happenstance. Yeah, that's it.

I'm actually just going to hope for good news. If it isn't, I can take it. If it is, ROCK ON!!!

I plan to have a great Christmas either way!

Who Am I?

Sometimes You Lose Sight of Who You Are. 

               (Can I have a reset button please?)

Nearly every day I ask myself this question of who I am. I never used to, or at least not with such frequency. I feel like my body, the very ground that I walk on, is like quicksand. Ever changing, constant fluidity. Or, at a complete stand still. Savvy? I can time-warp like nobody's business! Semi-permanent limbo.

I've been holding my breath for 17 months. Still have challenges ahead, oh, and right now.

Today, after the events in France, I feel such a deep loss... and wonder where our humanity has gone as a species. I also wonder how small minded some people can be. Wake up folks! The people of this planet need to find it's way to love. I think the violence in France disrupted and shifted the universe a little... or a lot. I got caught in that spiral, emotional Cancerian woman that I am. I wept. Wept off an on all day. We are all dying at this very moment. We don't need any help, thank you. We are all living at this very moment. How do, not just myself, we, connect and realize the preciousness, the perishability of life? Pagans call it the Twins- Life and Death. We need to stop wrestling and move toward love.

"We want healing from illness, but it's through illness that we grow and are healed of our complacency."  ~Peter Kingsley~

Complacency, now there's a word. I lived there. Then I got sick. I get swallowed up by my mind and my body. I actively try to do things every day that keep me from this depressing involuntary action. Some days I'm successful, some days not. I was not successful today. This illness is a heavy ball and chain. It got me out of complacency though. Yes, indeed. I'm still a little miffed the universe choose to do it in this manner, but what are ya gonna do? Now I look at same routine daily just to keep going. Weird, huh? That delicate balance of types of complacency.

David and I had a chat this afternoon that I won't go into, but it caused me go back to him later to tell him that in this past year I have never felt more unattractive, felt so bad physically, and it colors everything. It does. He's a pretty understanding guy. It speaks to fear, how can someone love me when I look and feel so awful... all... the... damn... time...! At the same time, I know thinking this way helps nothing, and is actually stupid, because if the roles were reversed, I would feel no differently about him. 

Currently, what is happening medically is:

Cardiologist- will be doing a cardiac MRI and Echo, she needs to not just read a report but see the pictures of the walls of my heart. She wants me to take care of my anemia (that's doctor #2 that has said that).

Oncologist- my doc is in Portugal right now, but I'll see her Friday. A different doc in the office a couple of weeks ago did a massive amount of blood work (9 vials) to check on several different things. He thinks the shortness of breath and fatigue is Herceptin/lung related. I did read it can cause pulmonary (lung) toxicity, and of course fatigue. So maybe there's something there. We are currently lowering the dose and going back to weekly visits. I have now concluded the lower dose has not had an impact.

I can say this- the last 2 weeks after my chemo, that very night I started wheezing and the shortness of breath increased, like an asthma attack. That's what I thought it was the first week. I had to call my PCP for a rescue inhaler that I haven't needed in over a decade. This week, during Friday night, I wake up wheezing again. Same scenario. The inhalers help the wheezing, do nothing for the shortness of breath. Pant, pant...

I'd rather be dancing. Just saying.

WTF & Update

Or, Subtitled:

What's This Thing Where My Breast Used To Be?

 **

The last few weeks have been interesting in terms of changes to my right breast. Specifically there is new discomfort to my muscles from my inner elbow, across my breast, and to my sternum. For example if I lie on my back I cannot open my arms outstretched without considerable discomfort. I've read radiation therapy can cause spasms, weakened and fatigability of the muscles and nerves... also fibrosis and sclerosis decreasing elasticity, shortening and contractures of tendons and ligaments. I will do what I can on my part to help combat this... and will talk to the doc on Friday about this.

There is also a firm(ish), cord like swelling from my tumor site to my nipple, and just last night noticed a larger firm(ish) swelling not far from that one. These are radiation changes no doubt, and another discussion with the doc... just to make sure. Schneikies... !

Tired.

I'm crazy tired all the time. I did some work in the yard yesterday and I always have a chair close by so if I feel like I'm going to pass out I can get to the chair before I hit the ground. I've been very short of breath the last 3 weeks or so. Just crossing the room can cause this. Fatigue? Heart function? Combination? I dunno, we'll see. Anyway, as time went on David said my time in the garden was shortening and time in the chair was lengthening. Still, I thought I did pretty well considering. My last little project was sitting down:

So, I'll just keep beebopping around and see what happens and what doc says on Friday. I see the cardiologist on Oct. 27th.

Update, Friday October 16th:

Had chemo today, the 16th. Need to check in with my radiation doctor. Apparently the breast (I say because it is now a foreign body to me) is indeed gaining some adhesions and fibrotic tissue, that cord is a tendon she could easily feel, hence, the difficulty moving that arm. Still lots of swelling too. I have a referral for some PT. That's cool.

As far as the shortness of breath, yes, fatigue, but she is withholding further judgement until I see the cardiologist... could be that too. She had me take a short walk with that little finger contraption that does the O2 Sat... that stayed good at 96, lungs sounded clear, but I was definitely gasping for air.

The struggle with depression I've been having is being this faaaaar down the road, wanting to start to build my strength and be a little more lively... and my body just won't quite let me yet. It's frustrating and I just feel so trapped at times. I know, I know... it is what it is and I need to just accept it. Well, I feel a little better in that I'm feeling a little more creative and can do some things on a much smaller scale to occupy myself with.

Here's some food for thought... imagine trying to watch a TV series, or read a book when you have short term memory loss.  Huh?  Right?  That's what I'm saying...



++ Grace Slick

Staring Into The Abyss

<sigh>  Alright.

Chemo yesterday, saw doc, and have good news.  GOOD NEWS! 

Disclaimer:  I realize medical reports always sound worse than they really are, and I know this every time I see one.  

That said, yes, the Echo was abnormal, there is enlargement in the left ventricle and atrium of my heart.  The key feature and most important thing is that the heart is squeezing sufficiently.  Herceptin affects the heart muscle, so I'm fairly good!  The enlargement is from 28 years of six, or so, hypertensive crisis, starting with pre-eclampsia with my first baby.  And though the previous Echo reports were normal the thing that happened was yet another hypertensive crisis induced by the doc.  Quick recap: fainting/dizzy spells she thought were caused by sudden drop in blood pressure so I was put on reduced BP meds.  Uh oh.  The mistake there was reducing meds that were keeping my BP normal.  So this was probably what tipped the scale to further enlargement and an "abnormal" scan.

Had a PET scan on Monday that showed the above, changes in the heart, stuff going on in the breast (post radiation).  No lesions or signs of metastasis!  YAY!!!

I said  YAY!!!!!!!!

That which remains the same are the cognitive issues (almost cooking the chicken in the refrigerator [and other like incidents], still struggling with finding words, and extreme forgetfulness [like from one sentence to the next]), and I know folks tell me they experience the same.  Here's the deal though... I didn't.  I never had these issues prior to chemo so it's been a huge freaking difference for me.  It still is surprising to me and it shocks me and I cry because I've lost my brains.  I grieve for my brains.  <deep breath>  Still have the neuropathy, RA, etc, etc... blah, blah, blah...

The point here is... I'm relatively okay and can deal with the parts that are still problematic.

Every cancer site you go to, Susan Komen, American Cancer Society... all of them talk about the financial aspect of cancer treatment.  One of those sites out there says the average owed amount post treatment is $11,000.  Thankfully that won't be me (I hope).  I don't want to spend a lot of time on this but just need to say a few things.  This happens to everyone with cancer, and is most serious with single folks.  So if you get that diagnosis you really need to read and check out all the cancer sites.  They are full of information on finances.  Like me, sometimes there isn't a lot you can do about it.  We all struggle with money, it's the times.  I had to stop work in mid-February (which scared the freaking shit out of me) and since then life has been hell in that regard.  Imagine first of all, any money you owed to anyone, and I'm speaking of even the little things... the power company, the garbage disposal company, and the really big things like gi-normous medical bills from surgeries, biopsies, mammograms, doctor visits, copays, etc. that just have to lie,  and accumulate interest, and go into collections...  I diligently wrote everyone I owed and told them what was happening, but we're talking money here, they don't care.  

Imagine relying on someone else to help essentially keep you alive.  I'm taken very good care of and lack for nothing, but I am being taken care of.  I have to ask for money when I need/want it.  That's no little thing, you know?  I haven't had to do that since I was 17.  It's HARD!  This is not easy on David either.  He's a saint, I'm tellin' ya.  We struggle and it weighs heavily on me.  My sister sends a little relief that's so appreciated (I can get still needed things, but things I don't have to ask David to get).  I'm sure that's a little hard on her too.  Think about it, you can't just go get a coffee, or a burger, or any small item for that matter.  Fortunately, I was for the most part a cash only gal, didn't do credit cards.  This all puts a lot of humility in your step, and I still owe thousands.  'Nuff said.

Sadly, when you have cancer... you can get it again... as one of my friends knows all too well.  Even the treatment you get for cancer can cause cancer.  Just stating a fact.  I'm not going to focus on this.  We do what we can in the moment, right?  It's just that little niggling fact that happily finds a little corner in your mind.

So, my nurse friend Jo offered another blog site to me where the guy talks about, and the book is titled "Radical Remission."  I still have fatigue and tire easily but its time to seriously and slowly work on building some strength.  I've pretty much lost it all.  Time to start working to get healthier.

As he states in his blog the bullet points from the book are:

1.  Radically changing your diet
2.  Taking control of you health
3.  Following your intuition
4.  Utilizing herbs and supplements
5.  Releasing suppressed emotions
6.  Increasing positive emotions
7.  Embracing social support
8.  Deepening you spiritual connection
9.  Strong reasons for living

Once I stopped the really nasty chemo in May I did start introducing some dietary supplements.  Some of the things on the list have come about slowly and as a natural course.  The key here, especially for me is to be more m-i-n-d-f-u-l.  I also started meditating again.  I think this is a great list.

I have been a recluse... maybe that's not the right descriptive word.  It's been over a year now that I started dealing with this and for most of that time felt so mentally and physically awful that I didn't see many friends.  I'm starting to now.  I don't have much, but I have lots of tea!  So let me know if you're up for a visit!

I've had to overhaul my life several times in the past.  I've taken huge leaps of faith.  Self examination is no stranger to me.  

It's time once again to look.  Really look.  You can "rebirth" as many times as you want in this life.  The addition for me is I now have a perspective on life that is different since the cancer experience.  I'm still in it, but the worst should be over.  I've come out as one tough bitch!  Well... that's overstating.  I'm a great emoter and utilize that skill often.  So, maybe... soft hearted, able to endure torture?!  How's that?  Perhaps just shed the labels and call it experience.  That's some wisdom right there, isn't it?

Synergy & Potentiation

What's Separate, and What's ONE

Interesting just this week- Wednesday morning I woke up from my sleep and was in, I'm not sure, in a place... a blank place.  Then there was pain from my breast and burns and suddenly it all became clear.  It's true.  It all really happened.  I cried.

Today I woke up thinking it was the weekend.  Where's David, I thought?  He never gets up before me.  Is he sick?  Did I snore or something and he got up to sleep on the couch???  Several minutes later I realize it's Friday and David's at work.  I didn't hear him get up or leave like I usually do.  D'Oh!

Early onset Alzheimers?  More PTSD?  Just losing my marbles.

It's chemo day and I get to see a doctor I really like, I've seen him only 3 times when my doctor was out, but man... he's just so great.  The guy just exudes compassion.  I think that's remarkable especially for an oncologist.  Yes, they all care, this is a specialty they have a passion for.  He's a little more inclined to not have that usual "distance" though.  I respect that immensely.  I haven't been here for 3 weeks so several things have come up during this time.  I saw a gastroenterologist for some throat issues I was having and she didn't like a lot of my blood work she had done.  "Something needs to be done with your anemia, talk to your oncologist!"  It's borderline and the oncologists haven't been worried about it, it looks good to them, but not to the GI doc.  I have an appointment with my regular oncologist in 2 weeks.  We'll let her figure it out.

Vitamin D is really low... like, in the basement low... like, halfway to China low... GI doc says talk to your PCP, which I did and am doing the mega weekly dose for 2 months and then we'll figure it out from there.

The really big issue (for me) is the growing pain from my right hip.  It's been creeping up for a couple of weeks now (honestly probably longer but I sometimes tend to minimize, you might think that's funny because so many awful things are going on with me that I report... but it's true nontheless).  It was so painful that I had to use my cane all day yesterday.  Had extreme trouble going up and down stairs.  Perspective is an interesting thing here because you have to remember I have very painful burns going on right now, have 4 more burns than the last posting.  I tend to look at the whole picture- okay, I'm already in a lot of pain so all this pain is just boosting the other pain... a big ol' ball of pain synergy...  If they were all by themselves maybe the story would be different?  Crazy rationalizing, huh?  It's so hard to tell sometimes.  Anywhom... (as my son would say) The doc today did some pressing here and there and said you know... it wouldn't hurt to get some tumor markers and another PET scan.

Criminy.

As I've said several times before... when you have cancer and other little things pop-up it means... more cancer.  As in a bone metastasis!  MFSM!!!  I can't help it!  My brain went right there!  Large marrow producing bone!  Cripes!  Geez, I amaze myself sometimes.  I got a shot of Toradol to see if it would help before I even left the office.  It did... a little.

In the interest of full disclosure my RA has been bothering me... pretty much all over my body, hands, ankles, they all just want to snap off.  But this hip... I'm tellin' ya...  It was so bad last night (and I did tell the doctor, yes I did) that I took a measly 1mg of a steroid I had (for my throat), just to ease the pain.  Did it help, he asked?  Why yes, yes it did.  Still pain, but not as bad.  He considered for a moment giving me more, but I don't want to go there.  As soon as you go there it's likely you stay there and I'm not ready for that.  So I'm recommended to go back to a Rheumatologist.  Okay, that I can do.  [Aside: then my head goes to a 5-year flare-up of the 90's and all the meds I was on for that.  Don't want to revisit that but... will do what I must]

It's very difficult to determine what is separate, and what is caused by something else, or an adverse effect.  Mind boggling.

I'll just keep plugging along.  I do know the burn pain will end, just not as quickly as I would like.  The rest- it's a crap shoot.

Well... maybe not clueless... but even for them it's hard to determine some things.  Doctors are, after all, really good and educated guessers.

Radiation Burns

Sharing Misery

I feel so sad today because I'm so tired of my radiation burns and the unrelenting pain. I cry many times during the day (especially in the morning and at night when I have to clean and redress these wounds) just because it feels like it will never end. I keep waiting for that moment it will become even tolerable... yeah... that's not in site yet.

These pics were taken last Monday. Two of them are worse today- 5 days later.

On my neck there are 3 from radiating the lymph nodes in the clavicle, you can only really see two here, the other one did not show up in the pic. These are irritable all the time, but not painful unless I forget in the shower and drag a washcloth across it... yes... it happens.

This is in my arm pit, doesn't look too bad but is redder than it shows here, new skin underneath, and I never realized how much that skin rubbed until I got a burn there! That sort-of line on the right is my scar from removing the lymph nodes.

Under my breast. That black stuff? It's my burnt and peeling skin. Have to take that off every day, or every other day. It's an open and lately a bleeding wound. Crap.  This one... this one right here... it's horrid to deal with. I cry whenever I even think about it.

The burn pain competes with the pain in my breast. I think it's liquifying. That's what I liken it to anyway... I know it's not really happening. I just know the sucker hurts really bad.

This is all normal for radiation treatment.

Quotes & Stuff...

"Yesterday it was my birthday, I hung one more year on the line." -Simon-

Today is July 21st.  One year ago today I was told I had breast cancer.  This date is as burned into my brain as my birthday, or death of my daughter, or birth of my son.

Needless to say it's been an extremely difficult past year.  At least I am here to be able to say those words.  At least I am here with a perspective you can only gain from that experience.  At least I am here having learned a thing or two.  I am grateful for so many things.

I've had a lot of practice in my life at various times to stop and examine my life, my goals, etc.  I have made bold changes, leapt into life without a net and a whole lot of faith.  The difference in the past year is that this time my body was forcing me to do that.  As a reluctant participant I had to give up a lot.  That's was hard and it was painful... at least that's what I thought at the time.  Hindsight, it's crazy, you know?  Doesn't seem hard now.  Acceptance has become second hand.  You do what you need to do.  That's all.

All that said- radiation is done for the day and I have 4 more, ending next Monday, the 27th.  I'm told my skin looks amazingly good... that, in spite of an open wound and peeling skin.  Yeah, what's that???  Oh!  It's my skin coming off!!!  It hurts most fiercely and I want to scream every time I have to care for it.  Instead I whimper and cry.  The site under my right arm where they removed lymph nodes feels like there's a rope under my skin, that site is irritated and red, but not "open."  Totally annoying.  I succumbed to accept pain meds... mostly for the evening wound cleaning and dressing.  I hate opiates as a general rule but will do this happily if it can help that process.

It will take awhile, but all will heal eventually.  Looking forward to that.

I just want to say to my FB friends, other friends and friends of friends, family... thank you.  Your show of support has been appreciated and heartfelt.  It doesn't take a lot to make someone feel better, and you have all done that with kind words.  Never underestimate the power of words.

I had lunch with friends Becky, CC, and Danielle last Friday.  It was so nice to see them and interact with them.  I haven't had the energy to be very social but it's happening gradually.

Speaking of words... my official favorite quote of the year is from Kristyne M. who is about to get married in August.  The quote is:

"I'm going to marry him so hard!"  It has been so sweet watching this love unfold.

e-jə-ˈkā-shən

I'm about to wrap up my fifth week of radiation tomorrow.  I had a CT scan today to determine what type of "booster" radiation they will do starting next Friday (I think... the dates are fuzzy...)  They drew lots of pictures on my chest again today and talked about photon -vs- electron treatment.  This is the picture I had in my head:

After the scan goes to the doc he decides based on my diagnosis and other info how they want to do this booster treatment.  Apparently through all the years of breast cancer data the recurrence of cancer is near, or at the previous tumor site.  I didn't research this, this is what I was told.  This is why they do the booster to the specific tumor site.  Mine was right up against my chest wall so who knows.  I did look the types of radiation up, this is what I found:

"A high-energy photon beam is by far the most common form of radiation used for cancer treatment.  It is the same type of radiation that is used in x-ray machines, and comes from a radioactive source such as cobalt, cesium, or a machine called a linear accelerator.  Photon beams of energy affect the cells along their path as they go through the body to get to the cancer, pass through the cancer, and then exit the body."

"Electron beams or particle beams are also produced by a linear accelerator.  Electrons are negatively charged parts of atoms.  They have a low energy level and don't penetrate deeply into the body, so this type of radiation is used most often to treat the skin, as well as tumors and lymph nodes that are close to the surface of the body."

I'm not sure what criteria cements the decision, but for me it's just a crap-shoot.  And I keep hearing Stings lyrics in my head- "deadly for twelve thousand years is carbon-14, we work the black seam together."

When I saw the doc on Tuesday everything looked beautiful (I'm talking skin, the skin was good).  My whole breast HURTS, and sometimes with stabbing pain.  On Wednesday I was in pain all day and night, didn't sleep much... and there is a spot that is not looking good.  Of course I will watch this spot and my armpit, also bad, like a hawk!  I did get some cotton sleeveless tees to wear under the bra.  Yes.  Under.  They tell you to do this.  Stay well lotion'd with Aquaphor or Aloe, and keep things dry at the same time.  I'm sure there's a balance there but it's hard to find and maintain.  I do know my skin looks awesome compared to my radiation mates who have open, weeping skin.

Today, Thursday, is a better day.

Friday is radiation and chemo day.  I plan to spend the weekend being stupid.  All I can do is go with it.

Okay... I'm THERE!

Costochrondritis

Little Update Here...

Yesterday and today my chest has been a little tight with an occasional cough.  Yesterday it wasn't a biggie but today things were worse and coughing a little more... I used my inhaler.  It made no difference... and I'm a little short of breath, more so than from the usual fatigue-shortness-of-breath.  When I breathe I get pain from my back rib through to the front ribs.  Hurts.  I saw the doc after my radiation who did an exam and said "Costochrondritis."

"We" of the cancer subculture (my people), usually believe whenever anything new or unusual happens that the cancer has spread.  This was my first thought, of course (snark aside).  But, doc said no... he talked about micro fractures in the ribs that usually happen AFTER radiation because radiation affects the bones.  In this case he thought it was this Costochrondritis which is "a kind of arthritis that causes inflammation of the space between the breast where the ribs and breastbone connect."  They will watch closely since radiation can also touch the lungs but he was pretty sure it was this, and it will eventually resolve.  In the meantime I'm supposed to use a cough suppressant.

My skin is getting redder all the time.  I'm totally good with that as long it doesn't open up.  This is a picture of the line they draw on me every day.  Not sure what that's about but seems necessary, I should ask sometime.  You can also see the bulge of my port and port scar.

I don't think I'm going to do too much today... you know... the rib thing, the fatigue, not to mention the heat and all the other assorted issues.

I'm power-watching Grey's Anatomy which is why the pic is up there.  Yes, seen it before, but thought I'd like to start from the beginning... relive it.  It's fast paced so keeps my head busy since my eyes aren't working well enough to read right now.  Oh, yeah... that's because of all the steroids I was on with my chemo...

...it will end some day... right?

Who Cares About the Alphabet?

Week Three of Radiation 

After this week, 4 more to go!  My skin is still doing well, my breast seems to get a little more tender all the time though.  At least part of the reason I think is the close proximity to my port.  They do not work "in concert," rather, they seem to antagonize each other.

The oncology doc having changed my blood pressure medication was a huge disaster, after 3 days I went into a hypertensive crisis.  Sheesh.  I will say the radiation oncologist admitted this was not an oncologist's bailiwick (my word, not his) and I didn't need to talk to my regular oncologist who played with my meds... but rather, I needed to go directly to my PCP, which I did, the same day.  I have a medical background but strangely enough when she was explaining things to me I couldn't  wrap my brain around it, and under normal circumstances I would have.  I guess I looked pretty blank.  Do you understand?  She asks.  No.  She explained it again.  Sorry, I can't get it, I really can't.  She is well aware of my "chemo brain."  Moving along... It  seems the faintness/loss of balance the oncologist thought was due to orthostatic hypotension is actually due to a touch of vertigo.  Next stop will be an ENT doc.  Though, I'm actually in no hurry, it isn't like they can do anything.

Yep.  Had actually a really bad case of that 3-years ago.  Damaged nerve in the middle ear.  How it got that way is a mystery...  it started with dizziness at night when turning over in bed.  That lasted about a month and then... BAM!  I was walking down the hall at work and suddenly involuntarily veered right... into the wall and went down... and could not get up!  To my amazement the front desk person, Gabriele, heard me go down and called some kind of code.  I couldn't even get up off the floor... just had to follow that spin to the right!  Staff and nurses surrounding me finally got me into a wheelchair and my friend Becky drove me to the hospital ER.  Of course such dizziness brings on vomiting... sorry, Bex.  They heavily sedated me and David picked me up to go home.  I seriously thought I was going to die in my bed the next couple of days.  Couldn't eat, couldn't drink, couldn't walk, had to crawl on all fours to the bathroom.  Vomited... well... dry heaved for a few days.  David took good care of me trying to feed me soup.  It took a few weeks but was finally well enough to work.  I don't mess around when I get something... I do it with gusto and a blaze!

Eugh.  Vertigo is not fun.  Crossing fingers it does not get that bad again.  I can at least cope with what's happening now.

I still have that feeling of losing myself.  You know?  So much has changed in the last year.  I'm coming up on a 61st birthday on July 20th.  Last year on July 21st I was given the news that I had breast cancer.  Turning 60 equalled cancer for me.  This past year has been a blur at best.  I've felt like a pinball- ping-ping-ping.... go here, go there, do this, do that.  My brightness has dimmed.  I feel... well... after chemo and radiation last Friday I was trying to put some CD's away, and for the life of me I could not alphabetize.  Couldn't do it.  Sometimes you just have to let go and go with stupid.  I'm just hoping I get some brains back at some point.  I did mention to David if I got much more stupid it's possible I might be more fun.

I was reading one of my pathology reports I needed to gather last week and saw something in it... of one of the two cancers I have the path report said "apocrine."  Had to look that up.

"Apocrine carcinoma is a very rare form of breast malignancy with an incidence of less than 1% of female invasive breast carcinoma."

Wow.  Leave it to me.

On the bright side I get to look at this everyday:

This doesn't suck.  It's a hummingbird soap opera at our house!  All the fussing and fighting!!!  Schneikies!  I've also identified at least 3 different dragonflies that frequent the yard.  I'll save that for the next post.

Radiation Therapy, Inner Voice, Hair & Toes

The Good / Bad Thing...

Second radiation treatment done!

This is the picture of the radiation machine:

It moves in a circle around you to do a CT (low level) scan every single time to line up with the original scan so you are in exact placement every single time.  I'm on the table maybe 10 minutes total.  It goes around, then based on the original scan they superimpose pictures and then correct alignment so it's perfect and then I'm irradiated... a few seconds.

Back in the old days they would focus a beam on you and it would go straight through your body.  Of course it wreaked havoc with other organs, bones, etc.   These days it's much more refined and they have the ability to arc the beam so it can curve.  This is a good thing, the other end of the beam just goes into the floor.  For real.  He did warn me that because my tumor was against my chest wall they will make every effort possible to not hit my lung... but it might.  That would be bad.

I nailed the doctor down today, I get 5 1/2 weeks of daily radiation for the whole breast, and then a week and half of booster treatments to the tumor/surgical site.  This is standard for tumor "margins" that were as close as mine.

I saw one of my chemo buddies today there.  It was nice to chat with her.  She is Stage 1 breast cancer.  I'm sure I'll be seeing her for awhile.

I was talking to David about hindsight and if I had known how things were going to play out I would have done some things differently in regard to my care.  BUT... I had a great surgeon who right from the beginning didn't think I had cancer... was surprised my biopsy came back positive... did my surgery and was surprised how invasive the cancer was... and all the lymph nodes were affected and hard little rocks.  She said I would have to come back for surgery but right then had to get me systemically treated.  I wanted the surgery to happen right away!  I wanted both breasts gone!  Right now!!!  No.  Chemo first.  You know the rest.  Ca-rap.

I'm well endowed, okay?  Yes, I am.  Without getting too freaking personal I will say that I'll end up with my right breast shrunken and rubberized.  I will never match again.  In my youth I had awesome titties.  Sorry for that crassness (kind of)... but that was long ago and far away.  My breasts now... well, lets just say they behave much differently.

David:  Small price to pay.
Me:  That's my optimistic man.
My inner voice:  Oh... fuck that shit!!!

~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^

Still have headaches post stopping the Anastrozole, but they are much better.  So grateful for that!

Took this pic right now, my hair is growing in... look at the silver...  Good thing!

Grossness ahead:  This is your warning!!

Need to see podiatrist.  Toenails are lifting up, separating from the nail bed, and curving insanely!  This is a direct side effect of the chemo I was on.  This is why I said I'll probably be losing some toenails. Horridly dry in spite of constantly being moisturized.  First two are from right foot, second two from left foot.  This, yes, you guessed it... it's a bad thing...

Misery.  My feet used to be cute.  And as my friend Abigail once said:  remarkably unmarred.

<sigh>

In A Mood

Subtitled:  Whatever

Seriously, not the best mood.

I'm complaining, so if you don't want to hear I understand.  Stop now.

My life this week, including last weekend has been about tears, pain, and feeling hopeless.

I'm fighting the system all the time it seems.  It should be easier, though in fairness, I understand why it's not.  I just don't feel up to snuff with my brain currently and that makes it all the harder.  I have a new appreciation for folks that are even less functional than I am currently who are traveling... (see?) I meant: trying to navigate several government systems.  Really frustrating.

Never in my life have I had to be dependent on someone else.  I was always so fiercely independent.  It's a hard and bitter pill to swallow, I'm here to tell ya.  What is that anyway?  Where does that come from?  Some sick family thing, I'm sure.  I'm doing the best I can but sometimes...  and I'm with probably the kindest man you could know.  I know I really "try" him at times.  Sorry, dude.

"Oh well, whatever, never mind."

I start radiation tomorrow, Monday.  I'm going, I can't remember, seven or eight weeks.  I get a special 2 week intensive focus on my tumor/surgical site.  I don't see the doc until Wednesday, I think, will ask him then... why...  I know they took more x-rays, CT scans, which leaves me a little freaked out.  Trying not to think of that.  And... whatever... right?  If they found a little something more, so what.  The radiation should get it.

I'm apparently at an increased for Lymphedema.  Fuck that.  I mean... whatever...

Okay, okay, I'll take care... don't draw blood from my surgical arm, don't get scratched by kitty on that arm, don't get scratched by roses on that arm (wicked bad).  Check, check, and check.

Remember this:

Right... let go... let go... let go...

The good news is my brain scan was CLEAR!!!   Yay!!!

The not so good news is I'm really struggling with near fainting/losing balance all the time, she thinks it might be blood pressure issues and we're playing with meds.  That added to fatigue.  Also headaches, stopping the Anastrozole for two weeks to see if that is the cause... like all headaches it colors my behavior.  I'm talking BAD headaches that made me hit my head so something else would hurt.  My increased pain from RA also colors my behavior.  Cancer colors... yep.

Feel like I'm losing who I am this week.

"C" is a Heinous Bitch

Last week I met with my radiation oncologist.  He's a somewhat charming guy who is obviously brilliant and has that uber confidence that I very much need right now.  He was probably that guy in high school most shied away from... hard to say, he looks like a linebacker-gone-to-seed.  I LIKE HIM!

I'm not having another surgery.  He convinced me.  Right now, post the nasty chemo, I'm still at a 44% risk of further cancer within 5 years.  Radiation will reduce that to 10%.  Surgery wouldn't get it down that far... and... surgery is:

Just.  Not.  Done.  Post Chemo.

Very irregular, and he said if someone wanted to cut me they better call and talk to him first.   See what I'm saying here?  Uber confident.  I appreciate that greatly.

I saw them today for an initial CT scan and tattoos... everyone gets them.  They take a mold of your body so when you start the radiation you'll settle into the same position every time.  The very difficult part for me is the arms overhead.  Let me explain:

Since I went into RA remission in 2000 I was able to stop taking all of those meds and did okay for about a year.  I started having mini flare-ups so I was put on an NSAID- Ketoprophen that was time released.  If you understand neurochemistry at all I have GREAT receptor sites for this little drug.  It's like Ibuprophen but not.  It keeps me from hunching over like a 90 year old in pain.  So... recently my insurance said "um, no, we aren't covering this because it's time release and too expensive."  My PCP's office sent over en masse a list of all the RA drugs they tried me on through a couple of decades and why I needed to remain on this one (hello, like I don't function well at all without it!).  A freakin' NSAID, for gods sake!  No, again.  Doc did the next best thing, put me on the same drug (just not time release) 2 times a day, and a lower dosage.

A week of this, holy crap.  I'm in super slo-mo.  Feel awful all day, every day, 24/7.  I cry pathetically all the time when I just can't stand it any more (like a half hour ago when I was crying into my spaghetti).

Every joint, back, knees....  I could go on a tirade about how insurance companies should not interfere with a doctors care and the well being of their patients... but they rule the world.  I know, I did utilization review.  And I savored those moments when I could fuss with them using their own standards.   It's the unscrupulous doctors that make the rest of us pay.  Dang.  Okay... but it was just a tiny tirade!

Where was I?  Oh, yes, it's very hard for me to keep my arms up over my head, lying down, with my chin pointed upwards to the left!  They have to radiate the breast, axillary lymph nodes, supraclavicular nodes, and some cervical nodes.  Now, it's true radiation only takes about 10 minutes or so, but today I wasn't in that position for even that long and I had to (slowly) bring my right arm down using my left arm.   <sigh>  Wah!

During this week of no pain relief and having to use a cane to help me stand in the evenings... I felt so alone.  This is normal I guess.  I'm dealing with that, and the C-bitch.  Yes, yes, I have friends, everyone is a phone call away, David is here, I have some family... I have God.  But when it gets right down to it... I deal with this alone.  I can explain what's happening to me, even in fine detail if needed, but the truth is... I do it alone.  I cope alone.  I change my head space... alone.  This past week I felt really alone.  Still do, but I see the relationship between how I feel and the "alone" thing.  If I felt better I know I'd feel better about everything.

Blogs are an interesting way to journal.  David says at least... see I can't quite remember what he said but it was funny and about doing the blog as a way that I could actually finish sentences and have the time to find the words I want to say.  Chemo-brain is still alive and well here.

Had more to say but will do another blog in a couple of weeks.

I figure with this cancer thing I'm building up karma/cred for the next transition... as in I do believe we all just transition from one reality to another when we die.

Over and out.

<end transmission>

Ch... Ch... Ch... Changes...

A lot of changes happening...

Had a lot of fatigue this last week, wait, that's not a change... hang with me here... it's frustrating when you're feeling spring/summer and want to do a bunch of things but just can't quite make it up of the couch or out of bed.  I did accomplish some things, just not nearly what I wanted.  I did see an SSA doctor last week who "clearly" found a heart murmur.  He listened two separate times.  I talked to both the Oncologist and my regular doctor (had yearly checkup) about it, both think its a little systolic "regurgitation."

Not to worry.  Okay I won't.  I have an Echo coming up this next week anyway so that will tell the story if there's any changes from the pre-chemo Echo.  What are you going to do anyway, right?  I mean, I'm in "show up and they all just do what they do" mode.  My PCP says her husband called it BYOB... bring your own body.  Yep, that's it.

I'm off all the really nasty chemo and will just be going in every three weeks now through January '16 for the Herceptin.  It has some side effects that are less than desirable but those I can live with.  I will see the radiation folks this month, AFTER I see the surgeon for a consult.  If we have to do surgery again it apparently needs to be done before the radiation.

The side effects of the nasty chemo will lessen in a few weeks and fingers-crossed the neuropathy improves, though doc said it may take a long time... (since it didn't improve while off chemo for 6 weeks) and sometimes never.  So we'll hang onto a little hope there.  My feet and hands are so freakin' sensitive, numbness, tingling, painful sometimes, and I have one spot on my right foot that is tickley, that's a new thing.   I would not be unhappy if all of it was tickley... well, maybe, that could get annoying too I suppose.

My right breast... it always hurts.  Varying degrees, but always.

I'm supposed to start on an oral drug called Anastrozole.  Because cancer is so sneaky it hides and cells lie dormant hoping to spring up and come alive at some point and wreak havoc again.  This drug is taken for 5 years and takes care of those dormant cells when they decide to become active.

Here's the month's schedule:
May 12th: Echocardiogram
May 19th: Bone Density Scan
May 20th: Surgery Consult
May 21st: Radiation Consult
May 29th: Next Chemo

Three appointments in one week... OMG!  Not sure I can handle it!

I'm becoming a furry mammal again.  So weird after being hairless for 7 months!  Seems... not right somehow... I kinda liked being hairless.

Grateful for:  being alive (cuz at the worst of it to date, there were times I didn't want to be... just being honest), grateful for David who makes me cry all the time with his awe-inspiring love, understanding, and support... and surprises...

...and who makes me feel like this:

Grateful for friends and family.

Grateful for my kitty Os, whose real names is Maahes.  Look that one up.  He is a constant companion well or sick.  (deserves a big picture)

Grateful for the nasty chemo ending and the great timing with spring/summer.  Makes it all feel better.  Gardens make it all feel better.

Says it all.