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.