Calm Before Thursday

Here’s a partial list of what the past seven days have entailed;

  • A trip to the Mayo Clinic
  • A meeting with Dr. Gita Thanarajasingam
  • A high fever & heart rate led to an admission to St. Mary’s
  • A hard ride home (car rides have become difficult…)
  • Hair loss = Head Shaving
  • Increase of pain due to metastasis of back tumor
  • Decrease of pain due to increase of pain meds
  • Mouth sores = Thrush = new meds = healing mouth!
  • A fall in the rain = twisted ankle = no big deal!
  • A decision on where to get my chemo treatment = Mayo!
  • Realization of true auxiliary costs to be in Rochester for treatment
  • GoFundMe to raise funds for accommodation during treatment
  • GOAL ACHIEVED of GoFundMe (Thank you, everyone!)

As you can see, it’s been one of the busiest weeks I’ve had since my initial diagnosis on July 23, 2018.

Six Weeks
Which was six weeks ago.  Which blows my mind.

I know it’s an old saying that life can change in an instant, and a diagnosis is NOT a life change.  The change had been happening slowly over the past months/year as the tumor in my spine had been growing, as the Lymphoma had been blooming like a forsythia branch across both sides of my chest.  And the past six weeks has been more than an “instant,” it’s been — well, six weeks.

Six weeks have never felt both as long, and as short, a span of time as I’ve experienced.  This week feels like a change in my recovery, though.  It feels like a point where I realize that I MUST take the reins, that I must be the captain of my own ship, and this makes me a bit scared, but also very strong.

Who knew that fear and strength could live so comfortably together.

New Direction
So today, with my early morning appointment to double check whether I will require a transfusion THIS week at St. John’s Cancer Center, will be a kind of ‘rest’ day.  It will be a chance to see the Chemo nurses who have been SO amazingly wonderful, to thank them, to discuss with them that I may be getting my Chemo down in Rochester.

I know that no one is invested in my staying at St. John’s, I know that the most important thing is that I get the absolute BEST treatment for my own body.  Avoiding a future relapse is my #2 priority. (#1 is beating this Lymphoma and going into remission)

I think Mayo will give me the best option to reach outcomes #1 & #2.

Break Up?
Yesterday I discussed this with my Radiational Oncologist at St. John’s, and she assuaged a bit of my — guilt? — at my ‘breakup’ with St. Johns.  I know this is the wrong way to consider this decision, but it does feel as though I’ve spent six weeks with one team, who has worked hard to get me to a plateau stage where I can even consider beginning chemo, only to move on to a different care team.

No, I definitely don’t feel GUILT, but I DO want St. John’s to know how grateful I am, although at times it was a rough gratitude, for their care and hard work for me.

Worry
I try hard NOT to be a worrier. I try to deal with worries in an intelligent manner, working through what it’s possible for me to affect, and what is beyond my power, and just deal with what can be dealt with.  It’s the same way I try to deal with guilt and shame, my mother used to say, “If you feel guilty, fix it. If you feel ashamed, apologize.”

It sounds simple — and I guess on one level it is — but it’s not EASY
Nothing about this has been easy.

I have worry about Gerry and his heart.  Right now his OWN cancer treatment is kind of on hold while we deal with his two heart attacks in March, and it seems the way that we’re ‘dealing’ with the heart condition is to — just sit and watch it?  He stopped his cardio rehab after another heart pain incident this Summer, and it hasn’t been started again, but it’s something that really WAS doing him a great deal of good.

So on Thursday when we return to the Mayo we’ll be there for TWO reasons.  As discussed above, I’ll be meeting Dr. T to discuss chemo treatment for my own cancer, and we’ll be visiting Dr. H (Gerry’s Hematologist) to talk about his OWN Multiple Myeloma, where he is with his numbers, how HE’S looking and what the next step is in HIS recovery.

I will always be Gerry’s caregiver.  Gerry WANTS to be mine, but his health isn’t allowing that.  Every day I’m so grateful that we have Andy to step in and fill in the gaps Gerry and I are leaving in each other’s lives, but that is NOT a fair place to put Andy in for a long haul.  And I’m hoping this is NOT for the long haul.  Thursday will be a big day for all three of us.

Thank heaven for Andy.

Resting
Aside from my appointment today, and some yarn wringing out that I’m going to wrangle Andy into doing for me, today is a REST day.  No walking, no trips, nothing but sitting on my butt, knitting, watching some TV and RESTING.

Yesterday I attended a support group meeting, a very lovely group of women who all have Stage 4 Cancer diagnosis.  However, I don’t feel the group is right for me at this time — I’m a bit ‘group shy’ right now and want to avoid the chance of infection
(several of the group members were coughing and sneezing yesterday.)

With two doctor visits and the support group, I was absolutely SHATTERED with exhaustion yesterday, today is Resting Wednesday.

I need this.

The Pain Drain

One thing about this whole cancer adventure is that I can’t really know what to expect on any given day.

It’s a huge mystery, and it seems that there are as ways a cancer journey can unfold as there are folks who’ve had cancer.

I had THOUGHT that once we got my pain settled with the 3x Oxycontin + as needed OxyCodone, I would be good to go.  And that worked for a few weeks.

But apparently because the tumor in my spine had metastasized again into my hips and tailbone, and it brings a whole NEW tenderness and sensitivity.  I wouldn’t have chalked it down as actual “pain” until today, when the sensation definitely grew into a pain situation.

My morning adventure was getting X-rays at St. Joseph’s hospital, then seeing my neurologist to discuss the X-rays, and then a drive over to St. John’s Cancer Center for a refill of my chemo pump medications and home for resting.

Unfortunately, St. Joseph’s is one of those old-type hospitals in a downtown area that is actually a series of buildings that have been cobbled together into one unit.  This means that there are very few DIRECT ways to get from one department to the next, so my walk from the entrance to Radiology, and then another walk to the Neurology dept were BOTH extremely long (involving several elevator rides and lots of walking)

And this caused me extreme pain.  It wasn’t the walk as much as it was the big brace I had to wear, which pushes down on my hips in a MOST uncomfortable way, and causes me to sweat like a Swede in a sauna.

Seriously, you could have WRUNG OUT the T-shirt I was wearing under the brace,
and heat causes my skin to bleed (I’m a redheaded weirdo)
and THAT causes a great deal of pain.

It was so bad that I got a special dispensation to only wear the brace for comfort reasons. I’ve been pretty good about wearing it whenever I travel in a car, or when I’m walking around outside, but with the advent of the hip pain I must admit I’ve been leaving it off as much as I’ve been wearing it.

I feel very fortunate that my neurologist is taking the fact that the brace is CAUSING me pain seriously.

But it’s been hard to climb out of the hole of pain in my hips that I slunk into this morning.  I know that after I’m able to get a decent night’s sleep the pain will begin to resolve itself, but right now it’s a cold, hollow pain that fills both hips, it’s probably time for a lidocaine patch, to be honest.

Pain is such a game changer.  It feels good to discuss it, but I also know how boring it must be to open my blog and read, “Pain, blah, blah, blah, PAIN!” But that’s my reality today.  Which is so weird after a few weeks of very decent pain control.

It also makes me wonder if the chemo pump drugs I’m on are having
some kind of effect on my pain meds, perhaps undercutting them in some way..?

Tomorrow I meet again with my Radiational Oncologist to discuss returning for MORE radiation treatments to deal with this pain, and to deal with the metastasis of the spine tumor.  This whole thing sounds so danged scary, but each and every nurse and doc and health professional I deal with has been NOTHING but hopeful that all of this is just part of my own, personal cancer journey.

I appreciate their hope, it gives me a lift, and makes my days a bit easier.  My nights, however, continue to be honeycombed with pools of pain and fear.

On a personal/work level, I am feeling terrible that I’ve not been able to swim above this pain to get more done on the website.  It’s like I can’t 100% focus on anything but — well — pain.  That’s what pain is, I guess, a big, fat element of life that steals all the focus from everything else.

And, by comparison, the pain I’m feeling is actually much LESS than the pain I was feeling for most of the Spring/Early Summer.  It’s just that now that it’s attached to the word “Cancer” it’s as if the pain has a deeper color, a scarier hue, and it can be alarming.

Chemo Day 1, Done & Dusted!

I’ve been pretty nervous about this chemo thing, nervous for many reasons.

70’s Movie Fest
First of all, I grew up in the 60’s & 70’s, I watched Brian’s Song and Death Be Not Proud and Love Story.  I watched Terms Of Endearment and Garbo Laughs and a plethora of other movies.  Oh, and the TV ad parodies…

Gee you’re swell!
Guess what? No one fucking lives in those movies.  NO ONE. It sets a kid’s head on a bit crooked to only ever see folks die in ‘cancer flicks,’ but that was the 70’s.

Even after experiencing the magic that is a “partial recovery” in my husband (well, recovery until his cancer reemerges every 3-5 years…) I find myself terrified that chemo = end of life.  But it doesn’t.  And I have to keep telling myself that.  It’s something I KNOW, but I still have to repeat it to myself.

Thank you, every made for TV movie I ever saw in the 70’s, for NOTHING.

Plus, in all those movies folks just get sicker and sicker.  They get sick ALL OVER THE PLACE, then they have a lot of pain, then they get sick again.  Then they die.  That is the script.  “Blech, ouch, bye.”

Not MY script.

Any Exhaust Port…
I was also fearful today about the port they had “installed” into my chest cavity a few weeks ago.

The first time they tried to use it, apparently there was swelling, but today after a bit of working around it was able to go just fun.  Huzzah!  Now I’m attached to a pump so I’ll be receiving the chemo meds all night long (Yo, check this Bitchie, Lionel Ritchie!)

I need to take a moment to talk about my Chemo nurse, Jennifer, who was SO damned amazing and wonderful and made my day good and special and positive.  THANK YOU SO MUCH, JENNIFER!   You did an amazing job today, and you settled the hearts and minds of myself, my husband and “Kid Caregiver” (Andy’s new moniker)

Tomorrow I’ll go back to the pump room to get more drugg-age to be pumped into my body and into my soul.  All night long.

Where Are We, Exactly?
Tomorrow I’m ALSO going for some kind of special big-time Xray at St. Paul Radiology so they can get a very good look of how my Spine tumor has dealt with the death ray we like to call “Radiation Therapy”

We just keep looking for the exhaust port in this Tumor so my tiny little Luke Skywalker can send some radiation torpedoes down it.  Tomorrow we see how successful those X-wings have been.

I’m nervous about what we’ll find in the Xray, but it’s a vital part of the recovery. Assessing how the therapies are working.

Lumbar Madness
On Wed I have yet ANOTHER Lumbar Puncture, with one each and every Wed after that for a month. And I have Jennifer, my amazing chemo nurse, chasing down anesthsia for each and every one of those punctures. THANK YOU, JENNIFER!

Why all the lumbar punctures? Assessment. We need to see what’s going on in what has become a pretty fast moving cancer ride.

The BIG Q is, “Is the cancer actually IN my spinal cord.”
Let’s just keep hoping the answer to that question will remain, “Nope!”
I told you the news last week wasn’t terrific. But I WOOL SURVIVE.

So every Tuesday evening will be a Dance party with Gloria Gaynor & Lionel Ritchie.  Let’s throw some 80’s Joan Armatrading in there for the Carrib beat.

“I’m lucky, I’m lucky, I’m lucky
I can walk under ladders…”

So that’s my upcoming week, and I am READY to go.

Breathe, Damnit!
Today during my chemo I had a bad reaction.  Not terrible, but not great.  When they sped up the infusion, my body responded by trying to shut down my breathing.  Gerry rushed to the chemo ward with my breathing meds, I was given a nebulizer treatment, and they slowed the chemo down to 50 again and all was well.

So I’ll be getting my Rituxan rather slowly, and that’s okay.  And I just realized I forgot to take my long-lasting Oxycontin OR my breakthrough pain Roxicodone.  It never ends, does it…