Pixelden

The good news for today:

I am done with prednisone for the time being–I took my last dose at 11 something after I had fallen asleep with the kids, woke up at 3:30 this morning and couldn't go back to sleep. This has allowed me to get caught up on things like a blog, emails and Facebook, all of which stimulate my brain and make me not at all tired. I knew an early wake up was probably in the mix.

I've got to watch the light of the morning, and listen to the early morning bus drive by. Feel the mist of the morning and hear Ben talk in his sleep– sweet little laughing and sighing sounds.  I heard Jas a little bit ago too, saying something and then turning back over to sleep.  But the boys are all still asleep, and I am sitting on the couch, wrapped in a blanket typing away.

The good news for the week, and the only good thing out of my treatment day, I will be getting my blood work for off treatment weeks done here in Santa Cruz this week and from now on. I will see Dr. Flam only on treatment weeks.  Yay Yay Yay!

Las Friday's treatment, specifically, Chemo No.3, was not much fun.  It WAS NOT on the good side of things. Let's just say 2 attempted IVs, a drug infiltration into my arm, and 9 hours in the clinic. What is good is that I made it and am now 25% through my treatment protocol.  Definitely have felt more puny and more emotional.  And just like that I am showered with gifts of love and encouragement. 

Kirsten gave me a present for making it to 25 percent– she is so awesome– a sweet little blue and white striped beanie and a most magical turquoise and blue water bottle.  Then I got a blue marble for attending a cancer support group yesterday and awesome blue rock.  Blue and turquoise are so my colors.

Natascha and her mom made most delicious macaroni and cheese and yummy salad Saturday when we got back from treatment– it was so nice not to have to think about what to feed the kids along with getting them to bed on time.  Natascha is awesome.

And then, on Tuesday, Zachiah brought by a fantastic salad that had strawberries, raspberries, pineapple, apples, raisins, cucumbers, avacado, almonds, lettuce, dates, sweet peppers, LOTS of YUM and delicious chicken to go on top of it.  OH and I forgot the garlic asparagus…. The kids ate the salad like finger food dipped in miso dressing. 

A good way to start the hump day.

More to come now that I am caught up.

So as sporadic as my blog posting is, I feel the need to document.

First what has happened since last posting, as lazy excerpt from an email to family, which was excerpted from a post to my friends.  So basically, rehashed words for documentation, but I've added a bit since the email was two weeks ago.

 In February, after a series of choking incidents, an endoscopy and some more CTs, my oncologist tentatively diagnosed me with Fibrosing Mediastinitus, a very rare fibrosing tissue disease that has no cure, and no real protocol of treatment. I went on Tamoxifen, as it had some results in case studies of reducing/ shrinking the fibrosing tissue. 

By June, I could no longer eat solid food or even swallow pills. I was coughing a lot, no energy, losing weight (10 lbs), and having nights sweats.. 

 In early July the "wait" became "see." I showed Dr. Flam, my oncologist, a marble sized lump in my armpit. The following day I had a surgical biopsy; the surgeon took out a ping-pong size lymph node and three others. That Friday, July 10, Dr. Flam confirmed that the biopsy was positive for Hodgkins Lymphoma. I had a PET/ CT on the following Tuesday, 7/14, and started chemo the next day 7/15. 

My diagnosis: Hodgkin's Lymphoma Nodular Schlerosing IIIb: Stage three, because I have it above and below the diaphram and "B" because I have symptoms, night sweats, coughing, weight loss, itchy rashes… Dr. Flam says it doesn't matter the stage, as the chemo protocol would be the same. He has modified my treatment because of the scaring and fibrosing tissue in my chest.  I am to have 6 cycles– 2 rounds per cycle (a cycle being a month) of Adriamicin Dacarbazin, Vinblastin, (just remember ADV) and prednizone for 5 days on round 1 and 3. 

Usually the standard treatment is ABVD. The B, bleomiacin, though, can cause long term damage to the lungs and chest, and with the involvement in my chest,  Dr. Flam didn't want to initially risk that with me.  After I finish my 2nd cycle, I will have another PET/CT, and if nothing lights up– meaning no cancer uptake, then I will proceed with just the AVD, and no Bleomiacin and no more prednisone.  If however, something does light up, then Dr. Flam will probably add the Bleomiacin and/ or continue with another round of Prednisone.  With the success of the chemo so far, we are feeling pretty confident that I will have a good PET– which means the rest of my chemo will be easier.

Dr. Flam has been working with me since the beginning of this journey, a year ago, and I really appreciate his intellect and scientific curiosity.  He is straight talking, analytical but open to my concerns and ideas.  He is well connected with Stanford research, so his practice reflects individualized treatments that follow the most current thinking and protocols in cancer treatment– Examples: I am not going to have radiation and I have this FABULOUS anti-nausea medicine that was approved by the FDA just a year ago.  The only drawback is that he is in Fresno and we're are in Santa Cruz.  We are working together, Dr. Flam and my primary care in Santa Cruz, and all to make it happen as smoothly as possible.

If everything goes well I should be done with chemo a week before Christmas.

Through this process there have been many "whys."   A big one, why so long to find it? Well lymphomas are statistically easier to treat than to diagnose.  Finding it can take from 6 months to three years.  I am thankful that I have been "watched" since the beginning, and that it was year instead of three.  Dwelling in the past does not help me cope with the present or manifest the future.

So now I am on the Clean Out Cancer with Chemo Challenge.  Always interesting, strangely curious, but not much fun.