You know what happens when you make plans?

God laughs.

He's laughing today at me, and how I thought I was all in control.

Got to chemo and everything started out just fine.  1 hour into the Rituxan infusion, my throat was tickly.  Then my ears started.  A little coughing, and finally Nancy reported me to the nurse. Allergic reaction.  6 people descended.  SIX.  One with a crash cart.  One was a PICU nurse (I'm pediatric?) The NP in charge.  The nurse taking care of me today, and a new nurse, who was shadowing her.  One taking vitals.   They unhooked the Rituxan, gave me a bunch of Bendryl, fluids, and I sat for 30 minutes.  The ear itching went away quickly  The throat took about 15-20 minutes.

So they started again.  This time I lasted 1.5 hours and the throat was itchy.  Then when I was convincing Nancy not to report me,  I started to get flushed on my face.

Back they come - 6 of them.   Same procedure, only this time....I have to go home.  Try again on Tuesday after taking Prednisone for 5 days prior to prepare.

I am extremely disappointed.  I had everything all planned for most of the treatments.  Babysitting, Chemo Buddy, EVERYTHING.

Nancy's heading back to Boston and then coming back again on Monday.  I'm feeling guilty about so much, right now.  Not my most sparkly day.

Today was supposed to be 16.7% complete day.  Now it's nothing.  UGH.


And now - another new plan.  They want me to go in tomorrow for the chemo portion of the meds.  I'll be happy to get that behind me.  Still doing Rituxan part next Tuesday after prepping with steroids to ward off allergic reaction.  I'm happy to get this part done, at least.  Nancy's staying.  We do this to her a lot.  Last time was my surgery and then Uzi broke his wrist and she stayed an extra day.  HAHA  Or...is she bad luck?  ;)

I am SPARKLY!!!...

Had my bone marrow biopsy this morning.  It's not enjoyable, but not horrible either.  Less painful than the shingles shot (that's my standard of comparison for things, since those hurt like the dickens!!!)

During the "extraction," Dr. S told the NP helping out that he is amazed at how I have no symptoms and seem to feel just fine.  He said, "You should see the PET scan and how she lights up all over - her bones, masses in her abdomen.  Crazy she feels just fine."  I told him that the PET scan lights up because I'm SPARKLY!!  (And he can get rid of the PET scan lights, but not my sparkles.  HAH)

Then the craziness began.  No available spots Thursday or Friday for me, so I have to start tomorrow.  TOMORROW.  7:30am.  Yikes.  My sister dropped everything and got in her car and drove down from Boston so she can be my chemo buddy.  And then Meghan got the arrangements figured out for taking care of Robinson.

And then I got a crown put in and my teeth cleaned, so I'm dentally ready.  ;)

Now just trying to figure out what to bring with me, and getting ready.  Pastor Robin gave me a breath prayer, and I'll be doing that first thing.  I love how that helps you focus. 

INHALE - Healing and Wholeness
EXHALE - Worry and Disease
INHALE - Faith and Strength
EXHALE - Worry and Disease
INHALE -  I am Loved
EXHALE - Thank you, Jesus.

I have a new SUPER POWER

Well, it's actually just a power port.  But it feels better to say SUPER POWER!!! (And obviously it must be all caps.)

Thanks to my dear friend Camille who trooped me to the hospital at 6am and kept me feeling loved, and made me laugh.  And for Lisa - keeping the home fires burning (which means she's watching Robbie!) It takes a village to keep me going. 

A power port is somehow better than a regular port.  I don't know how - but I'm sure that must be true.

So you go to radiology to get a port put in, and an interventional radiologist puts it in. 

First they show you an example of  the port.  It's attached to a page in a book.  It's purple, by the way, which is probably where it gets its power.  Then they flip the page over and this elastic-y flesh colored stuff stretches over it to show you how it'll look when it's inserted under your skin.  WEIRD!!  I had no idea that it would actually stick out that much.   I just kept getting weirded out about the whole thing.  The "conscious sedation" sounded like fun, but the rest....not so much.

So I walk in and lie on the table.  Three men are milling around, plus the very nice man who will insert the thing.  One is hooking me up to stuff.  One is talking about his skiing accident in Vermont this weekend.  One is apologizing for the very cool breeze from the vent that has an unfortunate location that blows cold air right on the patients.  They were all nice guys.  I felt well cared for throughout.  But lying there....all of a sudden...it all hits me.  There's no going back.  And I started to quietly shiver, and tears ran down my face.  The men politely ignored it and put a nice warm blanket over me.  And then one started to engage me in a conversation about my grandson...smart man.  I cheered right up.  That's all I remember until it was over.  They use a combination of Versed and fentanyl, for what they call "conscious sedation."  They told me I'd feel the local anesthetic go into my chest.  NOPE and NOPE.  I was out like a light, and happily so.   I highly recommend that combination for a nice little nap.  I woke up when it was over, and walked on back into the recovery area.  Out like a light and then awake.  Nice stuff.

There is a dressing on the chest area and another up where the catheter goes into the vein, at the base of my neck.  So far Robbie hasn't decided to pick at it, or smack his head down onto my port.  I'm glad for those two things!  It is a little sore, and pulls when I turn my head to the right (the dressings probably are causing that).  But it's fine.   In a week or so it'll just be a lump under my skin, and a couple of small incisions healing nicely.

Geesh - look at that turkey neck!! 

#4Monthsofyuk

Thanks to Devin for the hashtag concept.   #4monthsofyuk


I'll have chemo every 3 weeks for 6 cycles.  Maybe 5. 


About 10 days after the first treatment the hair will begin to fall out.

My first order of a few simple beanies arrived today.  They are "better than I expected," according to Meghan.  That means awesome.  It's hard to make a big cue ball with satellite dishes on the sides (otherwise known as my head and ears) look ok without hair.

But as hard as this is going to be - I'll be cancer free at the end.

#worthit

SO many tests, and the chemo hasn't started

Tuesday evening's decision turns into Wednesday morning's GO TIME.  Lynne got things started, and before I knew it, there were plans made for a port insertion, a bone marrow biopsy, a chemo education meeting with Dr. S's nurse practitioner, and an echocardiogram. Oh, and I have a temporary crown and need to get the permanent inserted, and my teeth cleaned, because they tell me you don't want to have dental work during chemo.

On a side note - I take care of my sweet Robinson M-F 7-4.  It's the greatest joy you could imagine.  So when I suddenly have a bunch of appointments, arrangements need to be made for Robbie's care.  Thank goodness for great friends.  Babysitters were scheduled pretty quickly.

An echocardiogram is not an EKG.  Learned that.   HAHA  It's more like an ultrasound of your heart.  I passed that one with flying colors.

The meeting with the NP to do chemo education was terrific.  She went through every medication in the R-CHOP mix, what they do, the side-effects I should expect, and the side effects that I might experience, but shouldn't expect.   She explained that I shouldn't live with nausea - there are meds to fix that, and she'll get them to me before we start. She explained the role of the "P" in R-CHOP - Prednisone, a steroid.  It should get me through the first days feeling pretty good.  She went through what was normal and what deserved a call.  She told me Dr. S told her to take extra good care of me, because I'm special.  I'M SPECIAL!!!  I've been trying to tell people that forever. ;)

So now it's just a few more things and I'll be ready to start chemo.  Shooting for Thursday Jan 31.

Watch and Wait changes into DO SOMETHING - and not something good

The interesting thing about getting bad news is that you can sorta feel sorry for the person who's having to deliver it.

My oncologist is a nice man.  He cares about his patients.  I've known him for 15 years, because he was my mother's doctor.  When he called me with the PET scan results, he had a sad tone in his voice.  He explained that things had changed with my condition.  The lymphoma had developed.  There was a new mass in my abdomen - over 2" in size.  It hadn't been there the year before.  There were other changes.  None of them good.   On a side note - if you hate delivering bad news, I'm not sure oncologist is the best career for you.

He said there was no rush to do anything, but that we do need to do something.  So we scheduled an appointment to talk about the plans.

Scheduled the appointment for Jan 29.  Then the questions started to come into my head, and from anyone I told.  So I quickly moved the appointment to Jan 22.

The appointment went as planned...to start.  Dr. S is always at least an hour late.  This day was no exception.  So when we finally went in (me, Michael and dear friend Lynne, a Nurse Practitioner), I was pretty revved up.  So when Dr. S started the whole discussion - various levels of treatment, things that were found on my PET scan, etc., I wasn't sure where he was headed.

Then the words came out of his mouth..."So I would recommend you do R-CHOP."  Standard chemo.  The real stuff.  Not the easy stuff.  The hair-losing stuff. 

So the deal is...my lymphoma has progressed.  The mass in my abdomen has popped up.  There's a concern that when this happens to your lymphoma, it could transform into a worse kind of lymphoma.    If you nip it in the bud with chemo, you get remission.  You're cancer free.  If you go with a lesser-easier treatment, you have to worry that in a year or two or five, it all comes back, and you need to do chemo anyway.    Deal with the chemo.  Put it behind you.

We left the Dr. appointment and I went between "let's do this" and "I'LL LOSE MY HAIR?" and tears.  But within just part of the ride home, the decision was made.  I want to be cancer free. It needs to happen.

Genetic Testing is weird

My mother had myelofibrosis (a blood disorder) and my father had lymphoma (large cell, which is scarier than my version).  I have lymphoma.  A connection?  I figured maybe, but everyone in the medical world said no.  So I had a huge panel of genetic testing done in September of 2017. In the original testing, everything came back negative.  In September 2018 I got a call that in an update of things, they discovered that I had a mutation of the CHEK2 gene.  That means a higher risk of breast, thyroid, prostate (luckily I don't have one of those!) and colon cancers.  Wait - I already have lymphoma.  Geesh.  So I needed to do a breast MRI and a colonoscopy, despite having had clear annual mammograms and a clean colonoscopy at 50 (I'm really good about doing the testing that I should be doing).   So I had a breast MRI in December (all clear) and a colonoscopy in January (small benign polyps were found). Next steps - Mammogram in June and colonoscopy in 5 years. Yay - that wasn't too hard!

Meanwhile, I had my annual PET scan Jan. 2, figuring it'd be the same old same old.  That's where things went wrong...

Hey - but at least that CHEK2 mutation situation isn't an issue right now!!!

It's all about Robbie

In 2016 Meghan was thinking of getting pregnant, and  wasn't happy with the OB/GYN practice where we'd been going. I decided  I'd be the guinea pig at a new doctor who was highly recommended. That's when it all started.  I'd been going every year since I was 16, and suddenly this new doctor finds a mass on one ovary and something maybe on the other.  Not a great introduction to a new doctor, but he was great about it, and got me quickly to get an ultrasound, bloodwork, and finally to meet a gynecologic oncology surgeon.  The masses seemed like they weren't standard gynecologic cancer, which was a blessing, but their exact origin was unknown, which was concerning.  The surgeon felt I should get a total hysterectomy, and full open incision, because if they were cancerous, he didn't want cancer cells released all over in the process of removing the masses. 

My OB/GYN meeting was September 13.  The surgery was October 5.  Clearly we moved things along as quickly as possible.  This is a trend....

Original pathology indicated the masses were not ovarian cancer, etc.   Final pathology indicated Follicular Non-Hodgkin's Lymphoma.  Totally unexpected.  But after a meeting with my new oncologist (and coincidentally my mother's oncologist), we were reassured that it was a "watch and wait" type of indolent (slow-growing) cancer.  It could be watch and wait for years and years.  We'd do scans once a year, watch for symptoms (pain, swollen lymph nodes, etc).  And even if I ended up needing treatment, it would be something I could easily tolerate.

PET scans in January 2017 and January 2018 showed little change.

Meghan's experience with the OB/GYN, on the other hand, showed THIS change!  This sweet boy, our dear Robinson, came into this world Dec. 6, 2017, bringing with him tremendous joy.