The Cleaning Fairy!!!

Guess what I get to come home to today?????  A CLEAN house!!!!  I am so excited.  It has been increasingly harder to keep up with everything.  And I hate having a messy house when I am not feeling well.  Mom and Dad have been traveling a lot lately to the exotic world of Dubai, and generously offered to send over their cleaning person today to our house instead of theirs.  :)

I just love my parents. 

And, even better news, I just heard about this service http://www.cleaningforareason.org/ who will send out a maid service while I am undergoing chemotherapy.  What a blessing. 

So I take happiness in the little things. 

And, Mom was saying how she missed the photos on my blog.  So here's one for you.  Maybe I'll go back and add photos to the others. 

The Purple Train

Check out what my dear dear friend Karen is doing!!!!  http://teampurpletrain.blogspot.com/

It's funny that I didn't notice this before...but is purple the color ribbon for lymphoma and leukemia patients?  ...purple?? my favorite color?  How appropriate!

Karen, you are amazing.  Your heart is huge and I just LOVE you!!!  Thanks for raising money for a worthy cause. 

The Rest of my Day

Well, I got that previous post done just in time for me to make it to my Progressive Medical doctor appointment.  While I was in there, I guess the nurse talked to other docs and when I got back to the IV room she told me I really should try to get to the surgeon's office today so that they can check out the port.  This got me very scared that something more serious might be wrong.  I kept asking them what they thought was the problem, and they just kind of brushed it off.  But still, I should go. Even Andre, the tech that always makes fun of me when I cry came up to me and actually comforted me.  And also agreed that I go to the doctor just to make sure it wasn't anything serious.  

So I call the surgeon and leave a voice mail.  While waiting I get in the hyperbaric chamber and just let my mind run away with me.  What if it is a blood clot, and it breaks loose and I have a stroke?  What if the port broke and I have to get surgery again?  Not to mention the fact that my chest was feeling bruised and swollen from all the sticks that morning.  I wasn't looking forward to anyone going in again and checking it out.  I cried and cried.  And this was supposed to be one of the precious good days I have.  Dammit.  One more good day given up to this illness.  

The surgeon's office calls and says he can see me if I can hurry and get there.  So I hurried.  And I got there.  My mom wanted to be there with me. As soon as she heard, she dropped what she was doing and drove down there to meet me and give her motherly support.  I was much closer though.  And was seen right away.  The surgeon poked and prodded, and sure enough...he GOT IT!!  YES!  I can't tell you the relief I felt at that moment.  I cried tears of relief.  The stress level had been rising and I was trying so hard to hold it together.  But when I saw that beautiful red blood...wow, I haven't felt that relieved in a long time.  You wouldn't tell by the tears, but you know...

Mom met me as I was leaving Kaiser.  We stood there and hugged in the sunlight.  A long, loving hug where she just let me sob on her shoulder and get it out.  I felt totally fried.  Totally fried.

She'd driven all this way.  And suggested maybe some therapeutic shopping to get our minds off this. The mall was just down the street after all.  I typically go home and work on the good days.  But I was so drained.  SO, I spent the rest of the afternoon with my mom shopping.  It was so nice.  She bought be two cute hats.  And I found the sale rack at INC and found some cute tops!   I am not much of a shopper at all, but somehow today, it was just what the doctor ordered.

So here I sit.  Headache, eyes puffy. But I am home, and I have the needle in my port. And I don't have to have surgery tomorrow. My mom showed her mother love again. 

I have this image of a video game character in which I have a battle axe in my hand and I just keep slaying beasts as they approach me.  One gone, then another.  I am just hacking my way through this adventure.  I wonder what the next beast will be?

Port Woes

So every Monday I come to Progressive and the nurse accesses my port with a needle.  This stays in me the entire week--tubes all taped to my bandaged chest.  I can't shower, Michael's been washing my hair in the kitchen sink.  But this does keep me from having to be stuck every single day.  It is better for the port too. 

I get respite during the weekend.  I take lots of baths, and can sleep more comfortably. 

So this morning I come in, and three sticks later the nurse gives up.  She can't get a blood return throught the port.  I can tell that she can get the fluids to go in as I can taste it immediately.  But no blood return.  And if you don't get blood return, you can use the port.  So I am back to the IV in my arm.  She assures me that it might have just been a bad day.  But I am so worried that there is something wrong with my port.  I DON'T want to go back and get surgery. 

Well, that is the news for today.  Good things about not accessing it...I can take a bath tonight!  And this also makes me appreciate how much I love having the port.  When it is accessesd, my IVs are like cake.  I don't have to keep a stiff arm, I don't have to worry about ruining my veins. 

I just hope she can get it tomorrow!

Mania??

Some many call it that.  But today I am feeling SO good.  It started Thursday night.  I couldn't stop bopping around the house.  Dancing, laughing, smiling, hugging and kissing my sweet husband.  I think I just really appreciate the good these days. 

Yesterday for some reason I was a bit weepy--again...that crying that just needs to come out.  I wasn't sad, just weepy.  Michael worked until midnight last night trying to fix an unruly instrument so the tech wouldn't have to re-prep samples. So I unexpectedly had the night to myself.  I sat on the back porch, curled up in a soft blanket and got lost in a book for hours.  It was delicious.  And then I got caught up on Top Chef--a guilty pleasure of mine.  Michael found me curled up asleep on the couch. 

And this morning.  Oh my goodness how beautiful it is outside.  It is the perfect fall day.  I made breakfast and we ate on the porch, with nothing but the bursting beautiful colors of the trees surrounding us.  I love our lot, it is lush and private. 

So I am happy.  Beaming actually.  Feeling great.  And I hope you all are finding joy in this beautiful day. 

Sending lots of love to you all!!  I feel like I've got a lot to give right now. 

Going with the Flow

So, it's been 5 weeks and 3 days since we've been married.  Making that 4 weeks and 6 days since I've started treatment.  That's enough time to get down the routine, isn't it?  I am feeling more comfortable with this ebb and flow as I am seeing it move for the third time now.  Granted, each time has been different considering which day I was most nauseated, which day I was most emotional, which day I was most tired.  But for the most part I am seeing that starting the day of chemo (wednesday) through the next Tuesday I am pretty much not myself.  The details of the "not myself" have been different each time. Today is the Tuesday after and this morning was the first morning that I have begun to feel somewhat normal again.  Not there yet, but I am dressed in business attire, make-up on, hair done (haha, what's left of it anyway), and sitting in the hyperbaric chamber for the final minutes before I rejoin the world and go down to Emory to listen to Ken Cook of Environmental Working Group discuss toxicity in our world today. 

So I made it through another round.  One thing we've learned is that as much as we are THRILLED that I had my menstrual period this week--that combined with chemo makes for one tough emotional time of it all.  I barely remember Friday as I cried my entire way through it.  Saturday left my face looking like I was donning bright pink eyeliner.  Sexy.  What I did do Saturday morning was make a cup of coffee and man alive....that stuff is like gold sometimes.  I enjoyed every last sip--spiked with manuka honey and soy milk...ahhhh......it's the little things in life.  But that coffee made me feel like a million bucks.  By 2pm Michael and I had cleaned the house.  And not just picked up...cleaned!  The windows were open.  The day was BEAUTIFUL!  It felt good.  The coffee lasted just in time for me to sit and read a chapter in the Power of Now before the amazing Meechi Peachie came over to give me one of her energy moving massages.  She left me in a puddle to nap, and upon rising, I took a hot steaming aromatherapy bath.  It was so nice.  I was ready for bed at 8pm. ....  After going to bed though I realized I just couldn't take it anymore and had to get up and do an enema. I kept obsessing that my bowel was making me toxic... Boy my life sure has changed these days.  ...

So no point in explaining in detail my life these past days.  I just basically have to live through the yuck times.  I want to crawl out of my skin most times and hang my self up on a hanger until it is over.  The nausea was bad this time.  It wasn't particularly nausea related to food, but to situations.  I did the hemi sync while nauseated and now can't stand the thought of doing it again right now.  TV makes me feel that way a little.  Being in my house did that yesterday.  I keep trying to just sleep so that I will not have to think about being.  But, I can't crawl out of my skin. And I do need to experience this.  So I am just grateful for waking up this morning and feeling somewhat better. 

I am looking forward to going out in public today. 

Even though it is raining. 

Michael has been amazing as always.  He's cooked, cleaned, done housework, rubbed my aching legs, held me while I cry, made me laugh when I need it, and generally has been the best mate I could ever ask for. 

I really appreciate all your love and support through this.  And for listening to me babble.  Onward and forward, right? 

Much love to you all. 

Daily Mantra

I will only need 4 rounds of chemotherapy (8 treatments).
I will not need radiation therapy.
I will not go into premature menopause.
I will learn how to keep my body healthy so that this will not happen again.

I think this every morning when I wake up.  And several times throughout the day when I am feeling down. 

The allopathic medical treatment of Hodgkins lymphoma is very successful.  90% cure rate.  This is incredible.  The standard therapy is just that, standard, and has proven itself.  That treamtment calls for 6 months of chemotherapy (12 treatments), and six weeks of daily radiation.  My tumors are spread throughout my neck, cervical lymphnodes and chest.  So this means pretty widespread radiation.

Side effects of chemotherapy--heart damage, lung damage, peripheral neuroapthy, loss in libido, and premature menopause. 
Side effects of radiation--increased risk for breast and lung cancer, and thyroid disease. 

BUT, these therapies treat what you come to the doctor to treat.  Lymphoma. 

We've made the decision to combine complementary therapies to hopefully reduce side effects, and reduce duration of chemo, and avoid radiation. 

It is not recommended by my oncologist, although he knows I am doing it.  It is not covered by insurance and will cost about $15,000. Not to mention the $6,000 that I have to pay to Kaiser for what is not covered.  The complementary treatment is expensive, and also not proven effective via large double blind placebo controlled studies that everyone wants.  It is not hocus pocus though, and is backed by several scientifc papers, and MDs who are using it in their cancer practices. 

My heart believes it will work.  That is why I wake up every morning, make my vitamin shake, pack up the computer, and head to Progressive Medical where we are taking a gamble.  But mantra in mind...and brain intact in thinking that I am fighting this beast in a gentler way makes me feel like it will all be worth it.  When I get down about expenses, these strange feelings are evoked. ... like how could I put a price on my healthcare?  My life?  What is it worth?  Is it worth working a few more years before Michael and I can buy land in the mountains and make a living there?  Is it worth perserving my fertility?  Is it worth preventing future cancers?  Well, I can say yes, it is.  SOOOoo the mantra:

I will only need 4 rounds of chemotherapy (8 treatments).




I will not need radiation therapy.



I will not go into premature menopause.



I will learn how to keep my body healthy so that this will not happen again.

It's been awhile...

So yes, I know...it has been awhile.  I've completely skipped over talking about my second chemo experience.  Really nothing other to blame it on than pure laziness. I am totally lacking discipline these days.  I have found myself succumbing to the couch more often lately.  It is amazing the magnetic draw this green mammoth has on me.  I didn't think discipline was something that I'd have to work on during this time.  But I need it so that I can sit back and look at this time as a time of growth, introspection, and, well, not just a blur of blah. I don't want to wither away this opportunity for growth, and I feel like I am struggling a bit with that now.  That was the one thing that I really looked forward to when I heard about this diagnosis.  I thought I'd have more time for working on myself.  But between doctors appointments, and trying to work, and fatigue. I am finding the space making absent.  But the thing is....there IS space. I just need to take it. 

Attention span-- is short short short. For example, today--I have to take Tylenol every six hours for the next two days to counteract the side effects of one of the chemo drugs on my lungs.  First of all, I couldn't remember where I put the darn bottle from last time.  You'd think I'd have put it in the place where the medicines go.  Well, not there.  So I went to look another place, but I found myself several minutes later doing something completely different!  And then I remembered I was on a path to find the pills.  So I realigned and still couldn't find them.  So I went to look for my phone to call Michael, when I found myself getting side tracked again with a paper I found on the table next to where my phone was. I completely forgot about the tylenol and the phone call until I sat back on the couch.

So my brain isn't crystal these days.  Some days are better than others.  I find tasks at work difficult--reading most specifically.  I have been having up days though.  So I know my brain isn't ruined.

I've also been side tracked with trying to get this book finished for book club.  It was a very long mystery novel. A kind that I don't normally read.  But I felt like I needed to get it finished because I've missed these past two months.  So, to garner the attention span to get deep enough in it for it to be engaging was tough.  And then I had three days to finish 400 pages.  Well, I almost did it, and went to book club and really enjoyed my time with the ladies.  :)  That was worth it.  But I am really thinking now that I am going to spend my time reading books that I really want to read.  AND, most importantly, finding some way to find a good UPLIFTING book.  We've read nothing but downers for months now, and my personal reading hasn't produced any uplifting books either  So I welcome any suggestions from you all.  I am not looking for anything overly religious. Philosophical and introspective, yes.  Just good, feel good, inspirational books.  Memoirs are always nice.  I might pick up 10,000 white women.  I heard this was good.   

Well, as I read back on this it kind of sounds like a whole lot of complaining.  Today was probably a bad day to write this post as it is the first day of round 3, so I am all doped up on anti nausea meds, steroids, and chemo.   And not feeling the best. Not to mention that my hormones are a little crazy right now. I also got really hungry on my way home from the infusion center and in some crazy moment of weakness stopped and got chick-fil-a.  TOTAL Crap.  But I wanted something greasy.  And I am pms'ing, and not really caring.  And that devil voice in my head spoke so loudly saying things like--who cares if you eat this shit.  You don't normally eat this and you still got cancer, so what the hell does it matter.  Anger is not a very familiar emotion with me, but it pops up every so often.  So I ate this food, and have been feeling like it poisioned me just as badly as the stupid drugs.  blah.

Maybe I should just stop writing today because I am feeling crabby.

And now I am crying.  Shit. 
-
--
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Breathe...breathe...okay.  Sometimes a cry is what I need to move through the tough time.

Let's go back a round.  Because it was very different than round 1.  I do want to talk about all the wonderful things from the past two weeks, because there have been some highlights that make my heart large.

Firstly, I got an e-mail from Dr. Hartle talking about how the full moon she saw on her drive home after our wedding, and then two nights ago so vividly reminded her of the color of my wedding dress.  I LOVE love this image.  Thank you Dr. Hartle for sending love and support, and giving me this gift that I will always remember each full moon.

Bonnie worked hard to help Jason get the photos from the wedding posted the day after my last chemo.  I sat in the IV chair at Progressive and just poured over those amazing photos for two hours. Ahh, nothing like a memory of happy times to make being at the doctor's office not so bad.  After the IV was finished, I packed up the computer, and moved my hair away from my face to get up.  And that's when it happened.  A large clump of hair came out in my hand.  Yin and yang again.  My really happy highs have frequently been juxtaposed with really down ones lately..

Andre, the tech there that is just priceless...always seems to walk in when I start to cry.  And, being a man, (not saying that all men are like this), he always gets all uncomfortable and stuff when I lose it.  He immediately began dialing a phone number on his cell phone, and then handed the phone to me saying I need to talk to this person.  He connected me with a past patient who had gone through what I was going through.  She was SOooo nice.  And it really did feel good to hear about her experience of losing her hair.  She is cancer free now.  And her hair is growing in thick and beautiful.

So it just so happened that Daniele and Heather were planning on coming over for potluck dinner that night.  And as they arrived, I said, ready to mix this party up??  How about we cut my hair?  And of course they were all game.  We ate delicious food together, on the floor of the living room.  I just love those girls.  And then Michael ran to the store and cashed in on April and Donald Earl's gift certificate to buy us a head shaving device.  SO thank you guys.  You were there in spirit on that heavy night. 

And off they went.  whew..it was quite a thing.  I've always had long hair.  I love long hair.  And I've known since the beginning of this whole thing that this would happen.  How to prepare yourself??  Hmmm....no way to.  But I can say that the timing was so right.  We created such a sacred space with love and compassion and intention.  Daniele spent a long time just brushing my hair.  Heather rubbed my hands.  Michael got the gadget all figured out.  And curtis watched.  They all took turns cutting.  And then it was gone.  I decided to go pixie for now, and I am not ready for the bald look yet . Everything in its own time.  After the girls left, Michael said.  Well, my turn.  ... and I had such mixed emotions.  I love his beautiful hair.  Why should we sacrifice both of ours??  But he was adamant, and wanted to do it.  He is showing outward support to the world for me.  And I just love that man.  So we did it.  I did it actually.  I shaved my beloved's head.  And he's got such a cute little pea head.

 

 

 

 

Good things these past two weeks:
--surprise birthday party for a friend...I made it there for the surprise!!  And then left the others to the debauchery.
--care package delivery from Becky and Pat with cool new hats and yummy homemade food!!
--weekend away in the mountains with my family...ahhhh.....THAT was medicine right there. I was SOOooo happy all weekend.
--RIN, Michael's mother CUT her hair off too!!!!!  Crazy!!!  But she looks so cute. And I love that woman.  She is so supportive and loving.
--spending time with Patty at her house.  And pouring over her amazing art work trying to decide which to pick for our wedding present!!! SOOoooo hard to narrow that down!!  She ended up giving us our shared one, and then one for each of us.  So generous, but so welcomed.
--Grandma, and her reiki.  She's been full of love and care, and spoils me with lots of reiki sessions.  Last week she came over to the house and we had a powerful session.  And afterwards she let me drift off to sleep on the couch while she just sat with me.  She is a healer and a giver.  And I am so lucky to have her in my life.
--final harvest from our summer garden..and delicious baba ganoush as a result!
--hemi-sync!!!! OMG!  have you guys heard of this.  This is something you listen to to help train your brain waves to relax you and eventually teach you how to cope with life stressors.  I LOVE this thing. I havent' felt this relaxed in as long as I can remember.  I am hoping to use this each time I am in the hyperbaric chamber.
--I have mailbox fairies!!  Linda, D., Fauna, and Bonnie and Rob.  ...you make our box happy. thank you guys.   

And that diary I was supposed to keep....

well, in a nut shell, the chemo didn't seem to get me down as badly this second time.  I had bouts of insomnia, especially the first night.  But the nausea wasn't as bad.  The fatigue...not as bad.  (although don't ask me about it today!!!  my memory is tainted a bit).  I never got to feeling AS good on the good days as I did last time, but emotionally I was much much more stable.  I think hormones really are playing a factor in how I handle all of this.  So we will see this time.  One thing I've learned. ...there are no rules.

So, things I'd like to add into my life right now...
1.  hemi-sync
2.  reinstate my yoga practice.
3.  read uplifitng books
4.  work with chakra meditation and trance dance
5.  clean house.

Well, wow! For low attention span, I guess I spouted off a lot here!  Feeling strange today.  So thanks for putting up with me.

love to you all.