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 Complexities of Gratitude

Happy Pumpkin Head

Thank you.

It took me SO long to learn how to say those words.

MUSIC MAN
I remember high school as years of pain, I was the poster child for “outcast” and ate my lunch just about every day up on the stage in the auditorium, surrounded by paint buckets and canvas flats, usually alone, happier than I would be at any other time during the day.

But a magical thing happened near the end of my last year in high school.

I became, briefly, popular (in a vague sense of the word…)

I left high school a year early and went to college at 16 (I turned 17 my first day at Denison University, in Granville, Ohio)  My last year of high school was my Junior year, and that was the year our Theater department put on The Music Man.  I was cast as Mrs.  Paroo (Marilyn’s mother) and I was damned good.

Let’s face the fact that character parts are WRITTEN
for overweight outcast high school juniors.  It’s simple truth.

So there I was, extremely funny; hilarious, even!

The day before the all-school matinee performance I couldn’t walk through the halls without being assaulted with cries of “BIG RED!” or “MOOOSE” (did I mention I was overweight…)

…and then the tone changed, and the cries I heard were, “Hey, it’s MAMA PAROO!” or “DAMN, GIRL, YOU ARE FUNNNNYYYYY!”

…and I had NO idea how to respond.

My first response was to flee.  To run.  To head to the bathroom and hyperventilate into my lunch bag.

My second response was to cry.  Publicly.  After all, “If you do something well, you should do it often!” (my mother used to say…)

But I did neither.  I found that the best thing to do was to simply say, “Thank you!” and smile.  So I did.  And I learned a lesson that most folks learn when they’re 12, when they’re not hiding from school bullies and/or their father, just being “normal” kids, trying hard NOT to draw attention to themselves while at the same time CRAVING that same attention.

I learned to simply say “Thank you.”  Two simple words.

And that’s what I say to all of you right now – THANK YOU!

MAYO GO?
Yesterday, faced with the fact that if I didn’t find a way to come up with money for lodging while undergoing my chemo at the Mayo clinic I might possibly NOT be able to actually GET the chemo, I became overwhelmed with frustration.

This “Cancer Road” has had both good days and bad, there have been many more good days, but yesterday was a very bad one.  It was my birthday—a happy one—but I was plagued with fear about NOT being able to go to Mayo for my chemo.

Mayo is where Gerry was treated 12 years ago for Multiple Myeloma.
An expert in my type of cancer has agreed to take on my case,
and there’s a chemo protocol she’d like me to enter into that I can’t get anywhere else.
Going with the Mayo Clinic seems like a no-brainer.

However, an oddity of Mayo is that most patients are treated as out-patients, which reduces the stress on their staff taking care of admitted patients, and also reduces the chances for cross-contamination or infection.  We discovered this when Gerry was being treated, and it makes sense when you think of how many infections and diseases are ‘picked up’ at the hospital these days.

This means, though, that food and accommodation must be figured into the budget of any Mayo patient.  There is a whole sub-economy of apartment and house rentals, and there are SO MANY HOTELS in Rochester (just about all of which have a discount plan in place for patients) that there should never be any question of being able to FIND a room.

The problem comes with PAYING for that room.

My own chemo will be on an odd schedule; a week on, then two weeks “off” when I can return to St. Paul and be monitored by St. John’s Cancer Center (where I’m currently being treated with a less strong chemo regime) 

This is different than most Mayo patients, who come and stay for a period, then go home.  I’ll be coming and going, but the overall time frame will be at least 4 months.

CHARITY HOMES
None of the charitable homes run by the American Cancer Society (or other helpful organization which hold rooms open for folks) in need have ANY vacancy.  These are amazing resources, and I wish that I had the luxury of a clear schedule to arrange these kind of accommodation a few months out.  But I don’t.

I have a very fast-moving cancer, it’s already changed SO MUCH in the short 6 weeks since my diagnosis, it’s not something we want to play with.

AIR BnB
All but the priciest of Air BnB’s are booked up during the weeks when I’ll need them (obviously folks would MUCH rather book someone in for a month instead of a week or two each month!) 

Air BnB can be an amazing bargain, but only if you can find the accommodation to fit your needs at the right time.   I’m looking for a small 1 or 2 BR apartment, hoping one will open up for the dates I need, but right now all that’s showing up during my proposed chemo rounds are upstairs apartments (I’m no good with too many external stairs right now…) or larger full houses which are too expensive.

When you glance at the homes on Air BnB, it may look like there are SO MANY BARGAINS! And there are.

Spam Wellington. You will NOT get this at fine dining establishments in Rochester.

But there are also SO MANY FEES, and by the time you’ve found a place where the available
dates mesh with chemo and physical needs, the price has easily crept up into hotel costs,  but without the convenience of an elevator, cooked breakfast, shuttle service, covered parking,  or any of the other things that make such a
huge difference in the life of a cancer patient.   
Having been through this with Gerry,  I know how much those silly little things really matter.

HOTEL
This leaves hotels as the best fit.  Hotels also tend to be more sanitary, with new towels each day and daily cleaning.  For the most part, the hotels in Rochester are aware of their special role in recovery, and take hygiene very seriously.  Also, because Kathleen and I travel so often for business, we are signed up for several mileage programs, which can get me an extra night here and there, and will make a difference.

Doing a cost work up (thanks, Deb!) I realized that for a four-month round of chemo I would need approx $2,000/month to cover expenses for myself and my caregiver (Andy)

So I did what I was loathe to do.  I set up a GoFundMe.

It bothers me that GoFundMe presents themselves as part of Caring Bridge, gets a ton of good press for being so pro-patient (over 70% of GFM campaigns are for medical expenses) BUT they also take a cool 5% off of each fully funded campaign PLUS additional fees.  I know they’re a biz and have to make a living, but that’s steep.

Almost FUNDED!

GoFundMe
Part of me wants to run and hide; after all, it’s a bit shaming to have to go, cap in hand, and beg real and cyber friends for money to be able to embark upon life-saving treatment for a deadly cancer.

Part of me wants to be all blown up with pride: LOOK WHAT MY FRIENDS DID!  But that is a terrible response to such kindness.

And it would be, in itself, unkind to those who aren’t lucky enough to have the large circle of folks I’ve lucked into!

WALK UNDER LADDERS
I happen to be among the luckiest folks I know (money issues not withstanding)

I am lucky because I get to do what I love, and in so doing it, I get to make hundreds of friends each year (otherwise called “Students” and “Customers” and “Fiber Biz Owners”) and, even FURTHER, I am so DAMNED lucky that I get to actually MEET these folks again and again at fiber shows and in classrooms.

Freelancing; owning one’s own income, this is not an easy road to walk in our American society.  We talk about loving independence, but our entire financial system is set up to reward ‘Company Men’ who throw in with a corporation in exchange for a low-wage paycheck and any kind of health insurance.

I’ve chosen a different route; creating my own business, and in so doing creating a couple of extra jobs in our community.  Living in Minnesota where the ACA hasn’t been dismantled makes this possible, but it’s never easy.  I know exactly how lucky I am to be here, and I am VERY grateful to the legislators of MN who help make this possible.

But self employed means, generally, skimping on things like Disability Insurance.  Or very good supplemental insurance for things like lodging when seeking treatment.  This is just one of the truisms of life.  Health insurance; check. Car insurance: check. Disability insurance? We can live without that.

OVERWHELMING WEEKEND
It was, overall, an incredibly overwhelming weekend.  Unexpectedly, I’d had to spend 2 days at St. Mary’s hospital in Rochester (part of the Mayo campus) because I had a pretty high fever and very high heart rate when I had my consultation and my new doc wanted to admit me.  It took 2 days to get my numbers back to ‘normal’, and it was a very stress-filled weekend.

Bye, Bye, Hair!
Then my hair started falling out in MASSES.  I can take a bit of hair-fall, but when it began clumping into my lunch, I was over it.  I knew it was time for the head shaving, and Andy and I made a fun video of it, but it was STILL one of the more stressful adventures in this journey.

Then there was my birthday to consider.  Yesterday I turned 57, the age my dad was when he passed, and in a yearly fist-shaking admonishment to his memory, I have sworn to OUT LIVE him, live beyond 57.

The irony of having THIS cancer during THIS birthday hasn’t been lost on me.  I can see Dad shaking his fist right back at me.  But he missed me this time!

FALL DOWN
And then there was a fall that I haven’t talked about.  I fell on Sunday morning, in our driveway, while I was out for one of my walks.  It was raining horribly, just pouring down, and I lost my footing at a very slanted part of our narrow drive.  I feel backwards, twisting my ankle pretty badly, but not doing any other damage.  I fell right into an incredibly soft bank of earth, so I was dirty, but fine.  Except for the ankle.

By Sunday evening the ankle had swollen pretty badly (it’s MUCH better, now, thank you!) and that was in my head.  I did NOT want to go to another hospital just to be told, “Ice it, elevate it, you’ll be fine!”  Besides, tomorrow I’m seeing my doc, so if there’s anything untoward I’ll be right at St. John’s, close to the ER or anywhere else.  That added a good amount of stress to the weekend.

So by the time I fully realized that my ability to accept the gift of a Mayo treatment plan hinged on my ability to pay for a hotel, I was ready to fall to pieces.  In fact, when Kathleen came over to drop off a lovely ice cream birthday cake, I was in quite a state.  Weeping, sad, scared, all of the emotions that are so difficult, but so necessary, to get out.

Perhaps because of this need to deal with the emotions, I finally decided to start the GoFundMe I’d been secretly afraid of, and it looks as though I’ll be fully funded very soon.

Spam Wellington, because you cannot get too much of a good thing.

Which is insane. AND amazing, AND which truly feels like an out-of-body experience.

Which leads me to pure gratitude.  THANK YOU.

And, apropos of NOTHING, I give you a dish I whipped up this past week. Spam Wellington. 

Because it was my birthday.

Beasts & Dragons & Maps

It’s the end of Chemo Week 1, and it’s been surprisingly good!

I love a good map. Right now my online friends are drawing one up for me each and every day.

Here Be Dragons
Not having gone through chemo before, I don’t have a point of reference for how this would have felt without the amazing anti-nausea meds that are available now.

Someone described their chemo experience on my Facebook page as “flu-like” symptoms, and for me that’s definitely been the case.

These “Cyber Sherpas” help me much more than they’ll know.  And I take their advice with gratitude, with love, and with a grain of salt.

I look things up, I ask my doctor about some of the suggestions, and one or two things my doc has pooh-pooohed.  However, for the most part the assistance of folks who’ve walked this walk before me is golden, and my doc & the chemo nurses let me know how lucky I am to have a wide and world-encompassing body of Volunteer Guides.

The Best Laid Plans
Right now I’m supposed to have a tiny little pump filled with a drug called Neulasta chugging away on my stomach, but unfortunately it fell off in the midsts of 100% humidity and so much internal (from my hot, hot, body) heat.

Neulasta Pump

So instead of the pump I’ll be returning to St. John’s Cancer Center tomorrow for a Neulasta shot.  I mentioned this on Facebook and immediately received several suggestions to help deal with the bone pain the drug may cause prophylactically, and that kind of back and forth between me and folks who’ve walked this walk are priceless to me.  To be honest, I didn’t even KNOW there might be bone pain involved in this phase of the treatment, I am SO grateful to my online friends for pointing this out!

Claritin & Tylenol, at the ready, Barb!

Help From My Friends
I’m not looking for a “real life” support group right now, I don’t have the energy to get someplace on a regular basis, to meet so many folks, and—most important—I’m desperately trying to avoid other humans as I move into the phase of my recover where it’s quite easy to get an infection.

My white blood cells have been reduced because of the strong drugs I’ve been taking into my system 24/7 for the past 4 days, and a low WBC count = an opening for some galloping infection.  Time to call the cavalry.

Our family has been living with a higher likelihood of infection for years.  We take this into consideration with Gerry’s heath and also because of my Fibromyalgia.  When the kids were in high school, it felt as though every day brought a new cold or flu to our household.

I learned then that to venture out into the world Gerry and I would both need to use a battalion of helper soldiers (Emergen-C, Airborne, hand sanitizer, etc.) and that has been helpful in allowing me to keep teaching around the country from fiber show to fiber show without picking up something bad and bringing it home to grow.

But now, with the Lymphoma, getting an infection is more serious.  The Neulasta is designed to help with that, and according to my impromptu online support group the Neulasta can cause some pretty incredible bone pain.

Fear has it’s uses, but cowardice has none. — Ghandi

This is a bit of a rambly post, I think that has a lot to do with a week of very little sleep and a LOT of chemo drug therapy.  In the coming week(s) I may need a transfusion or two to help with my strength.

But what I DO want to convey in this post is my gratitude to all of you who have traveled on this road, and have reached out to me, showing off signposts and short cuts along the way.

Thank you.  You make me feel braver than I am, and I am grateful!

A Uniform

Uniforms are something I don’t have a lot of experience with.

Just a bit of hand sewing to go!

I never wore one in school, even in gym class we were able to wear whatever we wanted (that had changed a few years earlier, much to everyone’s great joy!) and my few forays into the fast food industry in my teen years were about as close as I got to life in a uniform.

But now I want one.  I want a Chemo Uniform.

I want something that’s easy to put on, take off, wash and just NOT THINK ABOUT.

Perfection would be a pretty linen dress that’s a big apron with lots of pockets. So I made it.  I may make another (in a different fabric) because this is going to be going on for more than a few months, and I just don’t want to have to spend time deciding what to wear each day.

So after pondering many images on pinterest, considering the important elements that matter to me, I pulled out some Laura Ashley fabric that I’d had squirreled away for almost 20 years and got to work in the wee hours.

Sleep comes around 9 or 10pm, and I enjoy it.  Then around 2 or 3 I wake, around 4 I get incredibly uncomfortable in my bed (laying can make my back ache, especially now that there are MORE tumors that have appeared in my hips and tailbone) so I get up and sit, read, knit, just change my position.

This morning my position was at the dining room table, sewing away on a machine I purchased last year at Stitches Midwest, and I finished my little dress in just a few hours.  All that time working in costume shops pays off when I want to whip up a new dress idea!

I’m gravitating to blue, which is my favorite color. I have SO MUCH BLUE in my box of fabrics, and I have ideas for more dresses and for a few pair of pallazzo pants which are easy to wear and easier to sew up.  I have a pair that I made in an exquisite rayon fabric back in 1990 that look pretty much as they did the day I sewed them.

Quality fabric is NEVER a mistake, buy the best fabric you can afford and you’ll have a piece you can wear for years!  If cancer’s given me anything so far, it’s time to stop and contemplate things I’d like to do, and realize that if I don’t do them now, I may not get another chance to.

A very dear friend, Jolanta, who some of you may know as the “bead and jewelry woman” from Stitches Midwest, sent me a care package yesterday with beautiful wafers, some chocolate AND a gorgeous Lapis Lazuli necklace.  Blue, and calm, and lovely.  Perfect for chemo therapy.

Fear Returns
The fear of cancer is always here, but the fear of BONE PAIN haunts me like my insane fear of flying, stinging insects.  I just received a note from MyChart (HealthEast’s portal) that I’ll be getting another lumbar puncture on Tuesday morning. This is a surprise, and I’m sure we’ll be spending a good deal of the day on Monday explaining that I WILL NOT HAVE THE PROCEDURE if they don’t include some anesthetic.

The place where I’ve been scheduled to get it is exactly where Gerry went for his first, with NO anesthetic, and it was absolutely horrible.  The two procedures I had along these lines this past week were both under anesthetic, and even then THEY hurt like hell for a few days after.

I keep running into folks who say, “Oh, I didn’t even FEEL it!” and I wonder at their strength. I know I’m a baby about a lot of things, this is one of them.

Another Class
On a MUCH brighter note, I signed up for another class at the MN Textile Center.

We are SO fortunate here in Minneapolis/St. Paul to have a wealth of museums, fibre and fabric resources and an AMAZING textile center.  The class I took in rug hooking in the Spring was SO exciting for me, so enjoyable.  It’s funny, I felt myself becoming weaker, more tired, with so much pain as the class went on, but I LOVED the class so much.

Now I’ll be taking a class called, “Wearable Art” and I’m really looking forward to utilizing some of the lovely fabrics I’ve been collecting over the past 30 years. Andy will be accompanying me to class as I’m not allowed to drive (too many drugs in my system.)

I’m looking forward to being in the class with Andy, who is beginning to find a love of stitching and fibery things.  Perhaps that’s something else that cancer will give me, a chance to connect with my kid on a whole new level!

I’ve never been shy about explaining how Gerry’s cancer, as scary and terrible as it was/is, was in many ways a gift to our family.  We don’t hesitate to tell each other we love each other, we know that time is never on our side.

So this morning I contemplate a nice amount of hand-sewing to finish my dress, and I ponder how lucky I am in the midsts of such a scary shit-storm of malignancy.  Please don’t think I’m a Pollyanna, I’m having a rough time dealing with many aspects of this journey I’m on, but I KNOW how ungrateful I’d be to NOT recognize how fortunate I am, too!

Fundraiser
We still haven’t heard whether I’m approved for SSDI, but I’m crossing my fingers.  Until then, life is a bit scary because so much of my projected income this year was going to be from classes I was going to teach at various fiber shows.  Add to that the medical expenses (it feels as though every week I’m dropping another $150 or $200 for copays and not-entirely-covered procedures.

If I DO quality for SSDI, the kicker is that it will be at a pretty low rate since I’ve been self employed while caregiving for Gerry for the past 12 years.  In our Social Security System, women who care for family members NEVER get a break, and it stinks.

Compared to what this adventure MIGHT be without insurance, we are lucky.  But it’s terrifying to see the bank balance go in one direction when I’ve been so used to seeing it rise and fall (like everyone else does, I’m sure!)

When I mentioned that I wanted to do a knit along, I hadn’t really thought it through – especially not as a fundraiser!  But the amazing folks at Mason Dixon Knitting (Hi Kay!! Hi Ann!) picked up on this and put it out there as a quick and easy fundraiser!

That was absolutely brilliant, and so many folks have responded by purchasing the Split Cable Wimple Pattern (currently $4.00 until I start my Chemo)  Thank you to EVERYONE, I can only say how humbled and grateful I am to each of you, and to the exceptionally kind folks who have also donated to my Paypal Fundraiser.  I feel crass even talking about it, but YOU are helping me pay my co-pays.  YOU are helping us put gas in the car for doctor visits.  THANK YOU.

I’ve Been Heard

Yesterday Gerry, Andy and I went to “Chemo Class” and learned about things to watch out for during my chemo (which starts on Monday, Aug 20 – our 25th Wedding Anniversary…) and get details on the average Chemo day, tips on dealing with the nausea, etc.

It was a good and helpful 40 minutes given by a pharmacy student and a nurse, very well done.  Thanks, HealthEast!

THEN my nudging and — yes, complaining — reaped the benefit of a meeting with two of the head honchos from the St. John’s Cancer Care Center AND my navigator (who is worth her weight in gold!)

We discussed the issues that had been bothering me, and to their credit they didn’t just pass along, “Oh, yes, we will DEFINITELY FIX THAT!” happy talk, but we had a REAL discussion about how the dynamics of the center are changing since the merger with Fairview, the drawbacks of staff shortages (and why it’s hard to just go off into a private room with a scheduler to comfortably set up my appointments.)

The discussion was good, honest, and I’m hopeful that if immediate results aren’t forthcoming, it won’t be for lack of notice or trying.  All I really ask is that they begin to SEE what could make the experience better for the patient, and seeing, begin to act.

So I WILL be getting my Chemo next week at St. John’s.  Then I have 2 weeks “off” during which time my doctor seems to think there’s a very good chance that I’ll need transfusions (the chemo I’ll be on is going to be pretty hard-core, Gerry found an article about it where it’s called, “R-CHOP” and it looks – daunting.

Gerry’s hematologist at Mayo, Dr. Sue, has become a personal friend of ours over the past 12 years.  We LOVE seeing her, we share a lot of sensibilities of East Coast Jew-adjacent folks and we laugh like nuts when we’re together.

Last November when I was absolutely knackered Sue picked up on it, and was a bit concerned when twice in a row I was permitted to give blood (my habit had been to give blood every 3rd month while Gerry was getting his own samples drawn) because  of low hemoglobin levels.  Instinctively, Sue knew something was up.

Sue has ALSO had her run in with Lymphoma.  The fact that our cancers intertwine between each other now seems bizarrely natural and familiar.

So Dr. Sue very much wants me to get a Mayo 2nd opinion, especially now that Stem Cell Transplant has been mentioned as a therapy to prevent return of the disease WHEN we are able to stop this nastiness in its tracks.

So during my two weeks off we’ll try to get me into Mayo for more testing.  We’re still looking into what this means in terms of insurance, and places where I might stay while in Rochester.  Financially we’re in a VERY different position than we were 12 years ago. At that point Gerry’s insurance, through his amazing union (IATSE Local #1) covered so much of our auxiliary costs (hotel room, food, etc.)

We’re NOT in that position this time, and 12 years of Gerry being disabled and me earning never quite as much as I’d hoped each year has put us on the back foot.  So we’re looking into Hope Lodge and other places/schemes whereby I could stay in Rochester for my one week on with Chemo, then back to St. Paul for my 2 weeks off.

And THAT is scary, too.  What if, while I’m home in St. Paul, I get complications.  This is all too big right now to take on in one swallow, I need to cut it into bites and digest it, which I will.

Gerry, who is the best human being I could ever be married to, has been thrown for a loop by this.  He is so helpful, so wonderful, but I also find that he’s oddly paralyzed by the idea that I have a disease that will be rocking his world and perhaps shattering it, too.

So I look to him for help that he is having a hard time giving.  And I have to realize this; Gerry is NOT Superman, even though he’d like to be.  Andy is wonderful, but learning the ropes.  The navigator at Health East is almost magical in her ability to understand and help, would I be able to find a social worker in Rochester who could fill this role?

All this is part of breaking down the problem to make it manageable.  Who knows, maybe Mayo will say there’s nothing they could do that HealthEast isn’t.  Maybe they won’t want to take me on.  Maybe my insurance makes this whole thing moot.

Stay tuned.  I hate having this cancer, I hate it like poison.

But I do love a challenge.

I could use a Knit-Along, how about you?

I was gifted with some Qiviut yesterday, and I’ve been stroking it and loving it ever since.

I generally don’t knit up stuff for myself, JUST FOR ME, especially not in such a luxurious yarn. I try to use our own ModeKnit Yarn when I knit these days, but—c’mon—Qiviut ?  This is very special.

I’ve been told by my Med Onc, that I’ll be losing my hair.  I’m debating allowing Andy to just go ahead and shave it, it’s pretty short already, but my condition will be that ANDY will have to be my Sampson and will NOT cut their own hair.  It will make me so happy to see lovely, rich, deep auburn locks growing while my own bald pate is shining with Dex-induced fever sweats.

But I will need some kind of head covering. If nothing else, for the AC I’ll be in the rest of the Summer, and my chemo will be going FAR into the Fall and Winter and perhaps Spring of 2019.

SPLIT CABLE WIMPLE
Instead of a hat, I think I’m going to knit up a cowl and use it in various ways.  I love folding and twisting a cowl to create a sort of hat, and that will probably be the way that I utilize this beautiful Qiviut. Cowls and wimples are my go-to, I find them so useful, so this will be my Joyful Personal Knit for the coming weeks.

Would you like to knit along with me?

Buy Split Cable Wimple Pattern Now Via Paypal for $4.00

Be a NUN – or just look like one!

In all honesty, the pattern is NOT well reviewed (there’s only one 2-star review…) but it’s always been one of my favorites. There’s no accounting for taste, but I have met folks who’ve knit this up and have loved it.

It’s NOT my best selling pattern, but I love the idea of company to knit this together with me.  So if you purchase this pattern it before I start my Chemo on Monday, Aug 20, the price will be $4.00.

 

Blog Support
I’ll be happy to blog about the how my knitting is going every week or so, point out highlights and address issues that folks may be having.  It will be a nice change of pace on the blog from “Ow, I hurt.” or “Ish, I’m tired!”

If you’ve never knit lace, this may be easy enough to get you going. There IS a cable in it, and I’ll be happy to discuss my technique for cabling without a cable needle.  The lace work is simple and very repetitive, and once you get the first repeat you SHOULD be able to read your work and memorize the lace.  Or not.  I don’t like to put expectations on folks for their personal knits, I just hope this will be simple enough to be fun, and challenging enough to be interesting.

We could treat this as a casual, online class. I’ll post tutorials as I can, and you guys can share info with each other if you want.

How does that sound?

Buy Split Cable Wimple Pattern Now Via Paypal for $4.00

You can use WHATEVER fiber you want!  I’m using the aforementioned Qiviut, which is slightly heavier than a fingering weight.  I’ll be working it up on size 7US/4.5mm needles because that’s the drape I’m looking for, but with a cowl the beauty is gauge is NOT vital, so you can just aim for the lightness (or heaviness) of fabric you’re looking for and start there!

A note about lace: Do NOT fall under the misconception that because you’re knitting lace you’ll want to use HUGE needles.  I like to knit my lace on a needle that’s NOT too large for the yarn. If there’s too much space between stitches (which can happen with larger needles)

You get the pattern, you find some yarn, and let’s get going on Friday, okay?  See you then!

Diagnosis Update, And A Decision (?)

Today we met with Dr. N, my Medical Oncologist, who had the results of all the tests I was given last week (with the exception of the bone marrow biopsy results, which are still outstanding)  My new diagnosis is a bit more daunting than the original.

High grade b-cell lymphoma with MYC and Bcl-2 arrangements.

Doctor M called it a “Double hit lymphoma” and said that it is a “Particularly aggressive b-cell lymphoma.”

I’m still working my way through this, mentally, and have asked my doc to send me any written information that I can study.  He is a lovely man, and will take as MUCH time as I need and want to discuss it with me, but I don’t feel I can 100% connect with the information until I can read a bit about it.  We all learn differently.

The chemo is going to be more aggressive than originally envisioned, and this is the part where I think I may need to take my care into my own hands in a way.

So far St. John’s has been good, if a little uneven, with the quality of care.  But one thing that’s been a constant is the confusion on the 2nd floor, the main Cancer Center where I’d be receiving chemo treatment.

The staff seem to be loud and a bit aggressive with each other, but I may be misreading the room.  I don’t like loud noises, or loud voices, when I’m trying to work through something.  I don’t know how difficult it will be for me to insert myself into this environment each day for chemo.

Also, there seem to be odd misunderstandings. For instance, as I checked in today one of the reception staff asked if I had a port. I said, “Yes.”  Somehow that got translated to the nurse taking my blood thinking that I had requested that my blood be draw from my port, which I definitely did NOT request.

The port hasn’t been used yet, I have NO IDEA if it’s entirely healed, I wouldn’t have requested that.

But there it was, THE PATIENT HAS REQUESTED THE PORT BE USED. So the nurse tried to use the port, it didn’t work, she couldn’t get the needle thing in and it hurt like hell.  The nurse seemed put out with me, upset that I had my family with me, and the second nurse who came in to draw the blood from my arm was a bit abrupt, too.

Whether this is just ‘their way’, whether I was ENTIRELY misreading the situation (very possible) or whether there was some underlying reason for the oddness are scenarios I’m going through in my mind.  Suffice to say, the vibe of the place seemed odd to me.

But, then again, I just heard that my cancer is more serious than I thought. I’ve learned that it has to be treated more aggressively, and EVERYTHING seems odd to me.

I would be VERY happy to be proven wrong.  It may be that I’m just terribly oversensitive right now because of the change in the diagnosis, but it feels as though the needs of the patient may not come first in the Cancer Care Center at St. John’s.

Appointment Madness
I don’t know where the disconnect is, but I’m hoping that when I go back on Thursday for my “Chemo Class” I’ll get a better feeling about the place.

After my meeting with my doc, when ALL I wanted to do was crawl home, write a bit, do some research and contemplate what I’d just been told, I had to spend an hour standing up, leaning on a high counter, while one of the receptionists scheduled appointments.

Making a woman with so much cancer pain stand at a reception desk for an hour scheduling simple appointments just seems cruel.  At the least it seems they should have a dedicated scheduler on staff where a client can SIT DOWN with office staff and work through setting up appointments.

More to the point, I believe these appointments could have been scheduled very easily without me even being there!  I mean, I have nothing else on my agenda right now except for getting better.  If they’d just schedule the infusions, appointments and possible transfusions, I’ll just show up (or let them know if I can’t make them, and change them)  It seems a perfect use for the MyChart portal.

A Different Center?
I definitely want to continue my treatment with HealthEast, but an alternative would be to move my chemo to a different Cancer Center within the network.  Woodwinds is the center where I had the Bone Marrow Biopsy, and would be an alternative to St. Johns. But would it be any better? What makes me think one center would be more caring than another center?  It’s farther away, and it could/would make things more complicated with my Med Oncologist, which is not something I relish.

I don’t really want to change, I just want to feel better about St. Johns.  And that might not be possible, and I will just have to live with that.

HealthEast and HealthPartners are always sending out surveys for patients to fill out, I have two in my bag right now.  But do they REALLY want to know about issues, are they REALLY interested in making the experience of healing cancer as good for the patient as it could be?

Am I just being difficult to ask these questions?

I think I need to sleep on a lot of stuff.  In all honesty, once I get going at ANY Cancer Care Center, I think I’ll just be on auto pilot as I fight through however many Chemo sessions I end up needing.  I may just be grasping at silly details to keep my mind from focusing on worst case scenarios.

Farther Along
The phrase, “Stem Cell Transplant” was used as a possible prophylactic measure against return of the disease.  Having been through that with Gerry, and not really knowing what that might mean in terms of insurance, etc., I’m just leaving that alone right now.

It’s scary, though.

D Day

I’ll Be Taking The Walking Path For The Time Being!

The diagnosis of my cancer was PDQ (pretty damn quick), coming immediately after they’d finished my MRI on July 23rd.  At the time I was a bit nonplussed when the ER doc, after one test, made a pretty conclusive initial diagnosis; “Well, you DON’T have Fibromyalgia, you’ve got CANCER.”

After a bit of discussion I understood what me meant was that there were THREE pretty sizable sites of metastasis (spine, back of the neck and lymph nodes) which was as much of a guarantee that I had cancer as anything else they could have seen.  The mystery at that point was, what exactly was the PRIMARY cause of the cancer.

The days between the initial MRI, the lymph node biopsy and the point when the pathology was ready to be addressed were LONG ones.  Only 5 days, but it felt like 5 months, and it weighed very heavily on my psyche.  Those were 5 days of pure fear.

Dexamethasone: All the sweats, hot flashes, puffiness and irascibility of Menopause, now in a convenient PILL!

When my Medical Oncologist, Dr. N, sat us down and told us that I had Stage 4 Diffuse B-Cell Lymphoma, our reaction was SO positive I think it surprised him.  My big fear was that I’d had a large, solid mass tumor somewhere; colon, liver, some terrible place.  And THAT would have been a very difficult diagnosis to process.

But I was extremely lucky.  Lymphoma is a cancer where the word “cure” is actually used.  Yes, I am VERY lucky!

TODAY is another D-Day, at least for me it is.  Today is the day we look at the results of all those tests I’ve been taking this past week, most especially the bone marrow biopsy and lumbar puncture, to see if the cancer has moved into my spinal cord.  I think it’s about as scary as it sounds.

I asked demanded that I have my two more painful tests under anesthesia, and more than ever I’m convinced it was a very good call.  The residual pain I feel in my back and hips from these tests is pretty extreme this week, I would hazard to say that the pain these last few days has been as bad as it was at the start of this adventure in mid-July, which is pretty bad.  The main difference is that this time I have several pain meds I can use to break through this pain, and that’s a mercy.

Dealer’s Choice
So today I have my “long visit” with Dr. N,  where we’ll go over the test results and discuss what may be the next step in this trip.  With absolutely no medical experience or education of any type, my only point of reference is having been Gerry’s caregiver for so many years.

Topical pain relief from Galina!

But the truth is, Gerry is the ‘researcher’ in the family; he goes into his head, he reads stuff, he deals with numbers and percentages, THAT’s his comfort zone.

I’m not dividing my observations into a male/female way of dealing with pain and new medical information, because I know many women who are very numbers oriented (me, for one!) and I know MANY men who approach things in a more “feeling” way.

But in the case of Gerry and myself, I tend to be the “emotions whisperer” with the kids, Gerry tends to put the numbers into some type of structure that we can use to understand them better.

For this reason, when Gerry gets scared, or shows his emotions, it hits me very hard.  I’ve been scared this week, no specific reason, just overall FEAR.  Gerry admitted to me last night that HE is hella scared, too.  His fear paralyzes me, but I never want him NOT to tell me he’s afraid; he keeps SO much stuff bottled up inside as it is, I’m HAPPY that he shares his fears with me, too!

Emotional pain relief from Galina!

Good teams, like our family, will always find a way to regroup and work together, changing roles as each of us changes our outlook or understanding of the disease.  I am DEFINITELY feeling the need for some therapy, though. HealthEast Cancer Care at St. John’s only seems to have ONE Oncology Psychotherapist, and we have an appt for next week.  Apparently she’s exceptional, well loved, and — it being August — has been on vacation.

Note to self: NEVER get cancer in August again if you want to see your care team together in the same week…

I’ve been mentally preparing for The Worst News Scenario, and alternatively preparing for The Best News Scenario.  It’s really all one can do at this point.  Having spent a life in the theater, mostly working backstage, I love the feeling of an audience receiving all the parts of a theatrical production in the “order” that the director, designers and actors choose to present it.  Seeing exposition (back story) presented cleverly and well is a hallmark of exceptional theater.

Rx Pain Relief from the Docs

In terms of my cancer, ALL of the exposition rests in the hands of Doc N, who will reveal precisely what HE understands is happening inside of me later this morning.  In 4-1/2 hours, to be precise.  Which Gerry will want to be.

News when I have it!  Love always!

Strategizing

When Gerry was diagnosed wth his OWN blood cancer (Multiple Myeloma) in April, 2007, we were new folks in a new state (Minnesota!) with a couple of great kids who were newly placed in their brand new schools.

Max was a 4th grader at Randolph Heights elementary, where he quickly found a place with new friends (our neighborhood was LOADED with boys just his age, and he created some wonderful friendships right off the bat.)

Gerry Gazes at Scotland

We felt lucky to get Andy a place at the Linwood A+ school, which had an arts focus, and she did okay there.  Few things are perfect, but it was a lovely school at a tough time in all of our lives, and it was nearby and filled with active, caring parents and teachers.  Really, what more could one really need?

Giving Care
And me? I felt like was running, running, running.  Every day more running, never finished with what needed to be finished, learning to let things go that simply didn’t matter as much as what might be on the horizon.

And THAT was our default mode for years.

Trying to find joy and opportunities for growth for the kids, seeking as little pain and as much hope for Gerry, and me? Just chasing down freelance gigs and jobs that would dovetail with my own duties as Gerry’s caregiver and pay our mortgage was enough of a daily grind for me.

The spotlight that I knowingly focused on my family at this time has been debated online, folks have opinions about the wisdom/good taste of me writing and blogging about Gerry’s illness.

I took heart from the fact that Gerry seemed to love the blog, he was very happy with the book I wrote (basically the blog, plus extra bits) and I think he was proud of me.

We haven’t discussed it in so many words, but after 25 years of marriage, you have a sense of how your partner is accepting something, if you allow yourself to hear with your whole being.

Giving Joy
I was dedicated to not just getting THROUGH Gerry’s cancer journey, but to doing it with love and growth, passion and, yes, Joy.

A few years into our St. Paul adventure I signed up for a workshop at our local Public Access TV Station.  Max had been involved with them through an after-school-work program that the City of St. Paul had set up. Have I mentioned yet today JUST how livable and amazing our adopted town is?

Meta Max

SPNN, St. Paul Neighborhood Network, is an amazing resource, and given Max’s Television DNA* a perfect fit for him.  Watching him grow, and then seeing him learning to lead and teach other young people, THAT was the most amazing part of being a Mom during Max’s journey.

Andy moved in a direction totally new to any of us, which is exactly as it should be!  Once we were able to get both kids involved in the Breakthrough  Program, they found their places and just continued to grow.  We had to FIGHT to get Andy in, her teacher at the time was under the assumption that because, quite frankly, we were white, we had no place in the program.

So she withheld Andy’s application, and didn’t even send it in.  When we discovered this, I spent a few busy afternoons chasing down signatures and talking with program directors, and they promised that Andy would definitely be considered for the program.  Then we heard she was in, and we were so grateful!  It was the start of a very good chapter for both Max AND Andy, setting them up for success in high school and college.

Andy Draws On Her Love of Nature

At it’s heart, Breakthrough St. Paul (BSP) is a program designed to help kids who might fall through the cracks get on the right track and get into college.  Because of the topsy-turvey cancer life we’d been living, some days just feeling BARELY able to keep it together, the assistance that BSP lent us made a huge difference.

For Andy, perhaps the biggest milestone was a week-long canoe trip in the Boundary Waters of Minnesota.  This was arranged through BSP, the kids left from YMCA Camp Menogyn and happily paddled about for a week.

If I’d previously thought of Andy-and-the-outdoors at all, it was taking a bike ride, or a walk through the South Mountain Reservation (back in NJ.)  I did not expect the strong, formidable, brave and beautiful canoe goddess that began to emerge in place of my child.

Beautiful, Fierce Becca!

Each year Andy’s canoeing exploits grew longer, until by high school’s end Andy and 4 other women embarked on an amazing 52-day, 2-canoe trip through the Canadian Arctic, led by brave and resourceful Becca (who eventually became our first “payroll” Part Time Dyer at ModeKnit Yarn!  We’re one big family!)

Each child growing so differently.  So much joy that brings.  Andy went to canoe camp, Max went to debate camp, and life is always an adventure.

Care Taker?
In the same way our kids grow independent, part of a family but also vastly different, Gerry and I have cancer journeys that seem to diverge into a yellow wood.

We’d debated the term—and kicked about the role—of caregiver between us.  When Gerry was at his low point, I was there.  But a few years later when I seemed struck with Fibromyalgia** our story turned inside out a bit and he cared for me SO beautifully.

Now that I’m fighting my OWN blood cancer (Stage 4 B-Cell Lymphoma) my ability to be a care giver is in question, and with the return of Gerry’s cancer last Fall (and the complications from his latest drug therapy, 2 heart attacks in March) Gerry caring for anyone other than Gerry is out of the question.

Gerry’s caring strength rests in comprehending and explaining the ins and outs of our insurance, and he does that VERY well. Ever family should be so lucky to have a steward like him watching out for the asshattery of Insurance Companies as they try to find ways to screw us maximize profits.

<Rant>
We are DAMNED FORTUNATE to be living in Minnesota, where the government really DOES care whether it’s citizens have decent health coverage and, for the most part, refuse to play political games with our health.

This means that I don’t just have insurance, I have DAMNED GOOD insurance. When a state will allow it, the ACA WORKS!  When folks try to throw wrenches in the works simply to prove how much they hate Barack Obama, they do nothing but hurt their own citizens.  What on earth could be LESS patriotic that hurting American Citizens simply to win a political argument?

What I have is what EVERY AMERICAN deserves.  Freedom to pursue the healing plan that my doctor feels is right for me, and the right to question that, augment it, or change it.
</Rant>

But back to our family’s strategy for CANCER II, MOM’S TURN.  We’re still figuring it out.

Enter Andy
Fortunately I have a loving and willing caregiver in the form of Andy, just out of college, not yet employed, filled with love and capability!

In my condition, requiring help with several personal, intimate duties, I will most likely be permitted a PCA (Personal Care Assistant) and, if possible, I’m hoping we can make Andy that person.  I’ll get the help I need, Andy’ll have a paying job, and the school loans can start to get paid back!

It's ALIVE!

Time To Care For Me, Now!

Max will be returning to college soon, and I will miss him.  But at the same time, it’s got to be impossibly difficult for a young man to see his mom in such a physically debilitated state.  Moms & Sons, such a wonderful, yet delicate dance we do.

I don’t have a ton of pride, I’m more of a self-respect type of woman.  The nurses at my various procedures are constantly trying to tie up my gown, or throw another robe on me, scandalized by my milky white rear end  floating like a moon around my bed.

But I will cop to a certain pridefulness in front of my kids when I want to appear to be strong.  Once Max is back at school, I think I’ll be able to relax the standards a bit, not hold myself up quite so high, and I’m glad he won’t be here every day to see my fight through the chemo.

It’s a sad day when simply being CLOTHED is considered a high standard.

Tears
And now, just because I think it’s important for YOU to have a good, relaxing cry this Sunday morning, I bring you a lovely TV ad which features dogs, knitted dolls and love.  You’re welcome.

*Gerry and I have both worked in television, he as a producer-director, me in art & wardrobe departments. It seems we’ve passed this love on to Maxie.

**Did I have Fibromyalgia? DO I have it? Or was it this nascent tumor making itself known EVER THEN?

I’m Sorry..?

Being Sick Sucks.
I’m about to complain about folks being NICE to me. How bitchy does that make me, huh?

I will admit to being the kind of woman who DOES like a bit of the old, “How’re you feeling, Sweetie?” commiseration.

The Bruises Of my IVs

I like sharing with folks what’s up, and hearing their own ailments, and maybe both of us saying something to each other that makes us laugh and feel more okay with being under the weather. I like that kind of human interaction, and I’m not ashamed to say it.

I’m not a stoic. I am not brave. I am terrified of pain, I can be a child, and I’d rather be on my bike any day of the week than get a blood draw. It’s lovely that folks call me brave and stuff, but the truth is, I’m kind of tap dancing through this, I tend to be a funny person, but because I’m cracking jokes doesn’t make me ANY BRAVER than the guy next to me who’s doing this thing more quietly. I’m simply trying to be true to myself.

But here I am. As sick as I’ve ever been, even though I keep forgetting that and doing stupid things like getting up from my chair too quickly. And although it’s just been 2+ weeks, I feel as though I’m falling into a rhythm that might sustain me for a time during my recovery.

Because RECOVER is what I fully intend to do.

I’m not sure that I’m up to BEATING, FIGHTING, KILLING, or CRUSHING the Cancer. I just want to recover. Please.

At the same time, on a daily basis, because of my oddball way of dealing with my illness, it seems that I am disappointing SOMEONE involved in my recovery — sometimes only obliquely as a well wisher on FaceBook — but I ALWAYS seem to be a disappointment.

I am 100% certain that this feeling of being a disappointment is within myself, that I am picking up cues from folks they’re not putting out, I know I can do this, and the pain and fear that have joined me on this journey tend of screw up my ability to ‘read folks’ well.

An Example
Every day for the past 2 weeks I’ve had a radiation treatment.

With Gerry’s cancer, there was no large tumor, so radiation wasn’t one of his therapies. This is the FIRST time I’ve come into contact with a radiation laser, or with my own bizarre side effects involved in this therapy. Hot mouth, dry mouth, hot head, confusion and TOTAL EXHAUSTION.

Just.
Complete.
Absolute.
Inability.
To.
Get.
Up.
And.
Pee.

Which is a hell of a thing to admit in a blog, but there you have it. Perhaps someone, somewhere will find this titillating and might leave our country alone for a few hours?

Pills are pretty

When I get my radiation treatment, I hobble into the room with my walker (actually, Gerry’s walker from 12 years ago, and BABY and I glad we didn’t get rid of it!) then I slip off my robe and use a step stool to sit on the table.

The two technicians, in concert, lift my legs up onto a piece of foam to keep them in place and make me more comfortable. Then, on either side of me, each one takes an arm and they lower me into the correct position. I have sharpie on my chest that they use to anchor the laser, and I hold my arms over my head, grabbing a few plastic dowels, to help my body align in the way it needs for the laser to hit the tumor correctly.

The techs have the ability to take xrays as they work, sort of functioning pictures that help them determine that they’re exactly where they need to be.

Once I’m ‘locked in’ they start the procedure, and the laser arm slowly moves all around the table, sometimes the table moves slightly, and in about 15 minutes I have as much radiation as I can stand and it’s time to go. This is generally when my mouth is so hot I swear I could cook a marshmallow by just blowing on it.

The Radiation Table, which looks like a bistro in Chelsea.

A few days ago—a rough day—when I had a doctor’s appt and I was still on DOUBLE Dexemethesone (which tends to make me a hyper, slightly crazed, emotional mess.) I had one of my treatments that got a little emotional.

So there I was, Little Miss Messy Dexemethesone McMessy, strolling into my treatment, sitting on the table, and one of the techs reached her arm over and tried to bring ONE of my legs up onto the foam.

Because of the placement of the tumor, both legs must be moved together, to move them individually is very painful. Also, I just don’t have the strength to MOVE my legs, someone has to lift both of them, and the other person arranges the piece of foam and rests my legs onto it.

But the tech, either confusing me with a different patient, or forgetting that I can’t move my legs independently, seemed a bit impatient as she motioned for me to ‘get on the foam’

THIS is the point where she may have just been indicating, “Hey, there’s your foam!” but I READ it as, “Get your leg up there!”

So I said, “Um, I can’t move my leg on my own, I need someone to lift up both legs.”

She responded, “You did it YESTERDAY…”

And I totally lost it. I cried. I sobbed. I was a little diaper baby.

I felt so weak, so useless. Maybe I did do it the day before, I don’t remember, but on THIS day my pain and exhaustion were such that I could NOT do it at all.

I’m NOT not using the good mug anymore!

Before there could be too many tears and recriminations, we worked it out and all is well. The tech is lovely, it was simply a misunderstanding with someone (me) who is at a raw and sensitive time in her life and is on high-dose Dex. Maybe the tech is, too, come to think of it…

But I felt — I still feel — guilty for being unable to do what she wanted me to do. I felt guilty for getting weaker. I hate that.

One should not feel guilty for being sick, and I know this (you’re all going to tell me this in the comments, but I DO know this!!)  In short, I felt like a disappointment.

Don’t Knit For Me
The truth is, I really don’t need it…

Next on my hit parade is trying to find ways to tell folks THANK YOU, but the gift they want to give me will probably actually be a bit of a burden, and I don’t think I can deal with that as graciously as I would like to. Then I get resentful for the NEED to be gracious.

Then I realize that being gracious is the one thing that I still can do, even when I can’t walk well, or sleep all day, or knit. Being gracious takes very little effort, and is what will allow me to keep my humanity. And I feel like I’m failing in that department.

Some VERY KIND folks were talking about knitting a blanket for me on an online knitting site, I only heard about it because someone mentioned it in the comments for my blog. Such a lovely gesture, but so wasted on this incredibly hot, hot, woman.

I love the idea of charity knitting, I love the idea of doing something you love to help someone else. It’s a kind thing, and if the recipient needs a blanket then that’s a wonderful gift!

But if the recipient DOESN’T need a blanket, or a hat, or a jacket, or any knitted good at all, then is there a need to knit it up? Is the need about the patient at that point, or about making the person doing the knitting feel good about themselves?

I have MORE WOOL GARMENTS in my home than any other human being in the world. I am actively LOOKING for places to get rid of wool garments. I am HOT all the time, I seldom use blankets (I sleep under a sheet, even for most of the Winter) and a blanket is just a waste for me. In my life very few folks have knit for me, and I treasure each gift. The last thing I want to do is NOT appreciate a knit gift, but I also want to be able to tell folks, THIS MIGHT NOT END WELL IF YOU HAVE GREAT EXPECTATIONS…

Add to that how picky I am about my yarn, how sensitive my skin is right now, and the idea of receiving a box (BTW, opening boxes, extremely hard when you’re exhausted) cataloging a gift, writing a thank you note, finding a place to PUT the gift (Goodwill? A cancer charity?) Well, that’s all a ton of work, and I’d rather someone just message me to say, “Thinking of you, have a great day today!” than saddle me with the extra physical effort.

But when I said, “No blankets, please!” on FaceBook I heard from a few folks that I might have been more ‘gracious’ about it, and perhaps I could just take the blankets and send them to Gilda’s Club or something, and, besides (one woman wrote) that “every stitch in the blanket is a prayer!”

Which means I should — what? — donate it to a church instead of a cancer center?

I’d be happy to, but perhaps the blanket knitter should go to that trouble. I can barely get through a day without adding extra errands to my busy schedule of sleeping, sleeping and climbing onto tables to be lazered.

Don’t Pray For Me
Or, if you do, which is fine and lovely, but I don’t need to know about it.

And this brings me to prayer.

I’m not really a praying person, I have my own beliefs that I would not expect another person to adhere to. If prayer makes you feel more connected with your humanity and eternity, then THAT is exactly what you need.

For me, that is achieved through the repetitive activities I love, like biking, knitting, singing – I find great peace in all of them. Even in beating egg whites. It’s all a lovely, repeating sound echo that can get into my brain and bring me peace.

But sometimes – SOMETIMES – when folks say they’re “praying for you” you just sense that they want something back in terms of fulsome thanks, or a whisper, “Prayer DOES work, you know…” Folks sometimes REALLY need for me to buy into the power of the god of the talking snake, they need it for themselves, they need me to know that they’re prayers are BETTER than ‘good thoughts’ and will make the difference.

But I don’t believe in magic.

Like Mayo, St Mungos Apparently ALSO has Chihuly Glass pieces.

I love Harry Potter, a most EXCELLENT series of books. But I no more believe that Albus Dumbledore is going to get me checked into St. Mungos than I believe a nice guy with wounds in his hands and sides is going to remove my cancer.

I don’t JUDGE folks for believing it, although I realize it can sound that way. If you’ve been raised to believe that what you believe is RIGHT (and I was raised as a pretty firm Fundamentalist Methodist) then any doubting by someone else can sometimes feel as if they’re trying to question, or cut down, your beliefs.

A belief is SUCH a personal thing. You cannot CHOOSE a belief, it is — by definition — what you BELIEVE. I think because of societal pressures, ease of social mobility, the need to just get along in a family and community, some folks DO choose to believe what their family has all believed before them. I choose not to.

My belief is simple; whatever god there is can be found in the action of a human helping another human, or helping make the world a better place. Period.

So pray for me, or don’t, but please don’t feel badly if I would rather put my trust in Minerva McGonagall over Mother Mary. Professor McGonagall is definitely more my jam.

Don’t Cook For Me
Have I mentioned I’m 5?

I’m a picky eater. I eat well, and balanced, meals, but I’m picky. I hate raw tomato (cooked is nice) I’m not a fan of most cheese (too heavy for me) and beans are WAY too rich unless they’re mixed in with something else. Light beans, like green beans and half runners and even navy beans are great, but legumes with more oomph to them (lentils, chick peas, etc.) are just SO rich on my stomach that I’m generally sorry for days that I ate them.

A Nice Stew

I like meat, but not too much. A little bit of chicken, a tiny bit of pork. Just something to give the rice and broccoli flavor.

Spices are to be avoided. I’m a super taster, and when I put something spicy in my mouth I feel it for hours, if not days. I ate some pecans today that were not supposed to be spicy, but 8 hours later and my mouth still burns (see, radiation side effects…)

SO I am VERY hard to cook for. Once you know what I can eat, it’s pretty easy and I’m kind of a boring eater. Often Gerry will make himself and the kids much more exciting stuff, but leave me, happily, with three food items I know and love.

So when folks WANT to cook for me, I am very grateful and happy, but I also am on pins and needles. What if I don’t like what they cook? Will it be bitchy to say, ‘Oh, not a cheese fan!’ – I mean, don’t the ads on TV tell us that EVERYONE loves cheese? I can take it in small doses, and goat cheese is easier for me than cow cheese, but I’m just an oddball.

And, as odd as it sounds, I get SO MUCH JOY FROM MY FOOD that I don’t want to lose any of it, I want to eat what I love, and love what I eat. Once the cancer stuff is done, if you want to cook me a meal and try to get me to experiment, that is great. While I’m on the mend, I’ll just stick to the kinds of food that I’m happy with, that make me happy!

Conclusion
So now you know. I can be an ungrateful bitch, and I’m not thrilled with that aspect of me. But I hate to be beholden to someone for something that I didn’t really want to begin with, and am not really going to use.

One thing that happened today that made me INCREDIBLY GRATEFUL was that my biz partner, Kathleen, arranged for her hair stylist to come to my home and cut my hair SHORT. I’d wanted this for a while, but there is NO WAY I’m going to be able to sit in a salon chair for a haircut, let alone get there.

The cut, lovely, and my face is SO round with the Dex!

So Kathleen’s friend, Janet, cut my hair, and it is without a doubt one of the nicest things that’s ever happened to me!

And during the cut another friend, Beth, came by and gave Jasper a happy, happy walk, which was SUCH a lovely thing to do!

Believe me, I am UNBELIEVABLY grateful for all the love, the care, the gifts, the help with our situation. But I felt it might be important – ? interesting -? to share my feelings about gifts with which I struggle.

Women don’t often speak out like this, we’re supposed to clap our hands and say, “Oh my goodness, you READ my mind! This is EXACTLY what I wanted and I didn’t know it!”

But I’m not always willing or able to say that. And I know it upsets some folks.

And I’m sorry.

Damn. When will I stop saying I’m sorry.