Cancer Gives Me Hope

Lymphoma is a blood cancer.  So much of my recovery is wrapped up in blood, and blood products, that I realized early on I can’t allow myself to be too squeamish about this whole process if I want to write about it with anything approaching honesty.

As I’ve mentioned before, blood cancer is not a stranger to our home.  Gerry’s been dealing with Multiple Myeloma (a bone marrow cancer, a sister cancer to lymphoma) so in a weird way this experience is NOT as foreign to us both as it might have been.  Once again, Gerry goes ahead and quietly forges a path for us both to walk.

The point of my chemotherapy  (R-Chop is the term used to describe the cocktail I’m being given) is to throw some VERY powerful drugs at my cancer until it yells “Uncle!”

Hopefully the cancer will give up before my body does!

Here’s a brief explanation from The American Cancer Society’s webpage on R-Chop and a cancer similar to my own diagnosis.  It gives me a vague idea of what I might expect going forward:

Diffuse large B-cell lymphoma

Diffuse large B-cell lymphoma (DLBCL) tends to grow quickly. Most often, the treatment is chemotherapy (chemo), usually with a regimen of 4 drugs known as CHOP (cyclophosphamide, doxorubicin, vincristine, and prednisone), plus the monoclonal antibody rituximab (Rituxan). This regimen, known as R-CHOP, is most often given in cycles 3 weeks apart. Because this regimen contains the drug doxorubicin, which can damage the heart, it may not be suitable for patients with heart problems, so other chemo regimens may be used instead.

Stage I or II

For DLBCL that is only in 1 or 2 lymph node groups on the same side of the diaphragm (the thin muscle that separates the chest from the abdomen), R-CHOP is often given for 3 to 6 cycles, which might be followed by radiation therapy to the affected lymph node areas.

Stage III or IV

Most doctors will give 6 cycles of R-CHOP as first-line treatment. After several cycles, doctors may get imaging tests such as a PET/CT scan to see how well treatment is working. People who have a higher risk of the lymphoma coming back later in the tissues around the brain and spinal cord may be treated with chemo injected into the spinal fluid (called intrathecal chemotherapy). Another option is to give high doses of methotrexate intravenously. (This drug can pass into the spinal fluid.)

For younger patients with a higher risk of the lymphoma coming back based on the International Prognostic Index (IPI) score, high-dose chemo followed by a stem cell transplant might be an option. But it’s not yet clear if transplants are better as the initial treatment. Most doctors feel that if a transplant is done as part of the first treatment, it should be done in a clinical trial.

If the lymphoma doesn’t go away completely with treatment or if it recurs (comes back) after treatment, doctors will usually suggest another chemo regimen.

Several different regimens can be used, and they may or may not include rituximab. If the lymphoma shrinks with this treatment, it might be followed by a stem cell transplant if possible, as it offers the best chance of curing the lymphoma. Stem cell transplants are not effective unless the lymphoma responds to chemo. Unfortunately, not everyone is healthy enough for a stem cell transplant.

DLBCL can be cured in about half of all patients, but the stage of the disease and the IPI score can have a large effect on this. Patients with lower stages have better survival rates, as do patients with lower IPI scores.

The Mighty Hemo
One of the best indicators of the success of my therapy can be found in my labs (the tests that they put my blood through to see how well I’m holding up.)  Three of the main tests that my medical team looks at are Platelet Counts, White & Red Blood Cell Counts and Hemoglobin.

Back in October/November, when I was beginning to feel SO exhausted that I started to lose hope that I’d be able to continue working on ModeKnit Yarn much longer*, I discovered that my hemoglobin was hovering around 11.  While that’s not bad, it’s not great for an otherwise healthy woman, and it WAS an indication that something might be up.

But at this point in my chemotherapy 11.2 is actually quite good for my hemoglobin, and I’ve been able to keep that level up.  I think it’s dumb luck, I really don’t think I’m doing anything so much better than anyone else, but I HAVE been trying to eat a lot of good protein (salmon, yogurt, eggs, nuts) and iron rich foods (spinach, raisins) and that might be helping.

My platelet count is 228, not stellar, but not bad at all for someone who has just undergone a week of chemo. White Blood Cell and Red Blood Cell counts are 3.4 ad 3.94, respectively, which is also not bad.

This will change, I’m certain.  As my recovery progresses I’m sure I’ll have weeks when the numbers aren’t as good as this, and I’ll probably need a transfusion at that time. But the BIG NEWS THIS WEEK is that I do NOT require a transfusion.

Well, not today.  There’s always a chance I’ll need one on Friday.

SUCCESS!
The Nurse/Practitioner was very happy with my numbers, and so was I!  Because it’s August, everyone is on vacation, so he is a fill-in from Woodwinds Hospital in Woodbury, but he was a very nice guy and we had a great visit today.

So as exhausted and in pain as I was, dragging my sorry butt into St. John’s Cancer Center for a blood draw through my port, and came out feeling exhausted, but a bit victorious!

I need to caution myself, though, that if when I DO need a transfusion in future, it will not be some kind of failure, but simply the need to do for my body what it requires.

* This was a fear I lived with, quietly, for the past 9 months or so.  I would refer to my exhaustion every now and then to Kathleen, but mostly what I felt was shame that it seemed that I was unable to keep up my part of our work agreement. 

Of course, NOW I know that my body was battling Cancer, but at the time I thought I was just ageing very quickly, or maybe being lazy. 

I discovered during this period that sometimes, when I felt at the nadir of my strength, along would come a chilling fear that I’d NEVER have more strength.  A feeling like, “I will NEVER feel better than I do at this moment.”  It felt like the very definition of hopelessness.

As scary and overwhelming as the word CANCER is, it’s far LESS terrifying than the abject fear that I would NEVER feel any better than I did last November.  The diagnosis of Cancer has given me a bit of hope, and that’s worth gold.

THIS is why I feel lucky.  I feel that I’ve been given a chance to see the horizon, where before the diagnosis it was just a foggy bank of pain over in the distance.  Now I have a direction where I can look, and dream.

Some Days

Today is a pure exhaustion day.  It’s 9:17, I’ve been up and down since 2am (hip pain makes it hard to stay level, so I’m up, then down, then up, etc.  You get it…)

I just walked to the dining room, moved a very small watermelon to the kitchen, cut it open, chopped 1/4 of it into a bowl, and I feel as though I’ve worked a full day on the factory floor.

Jobs I thought I’d be able to do are slipping from my hands, and the gratitude I feel toward Kathleen and Layla for picking up the slack is larger than I can explain or ever return!

Today is the first time I’ll be able to get in to see the Cancer Psychiatrist, and this is a visit that is LONG overdue.  We were supposed to see her last week, but that visit was cancelled (it makes me sad because I wanted Max to have a chance to at least MEET the doc before he returned to school)

But I’m VERY grateful that it’s happening, and I’m going to try to
have the energy I need to make the visit really matter.

Couldn’t Come Too Soon
I’ve been so—stressed—over the past few days that I feel as though I’m coming out of my skin.  Small things, totally microscopic and inconsequential things, drive me up the friggin’ wall, and I’ve screamed more in the past few weeks than I have in the past 45 years.

I leave my first 11 years out of that because heaven KNOWS
how much I screamed during THAT period of my life…

So I’m hoping that there will be some strategies that will allow me to be a nicer, better person around my family (who are going through hell right with me…)

AND I’m wondering if there might be some kind of drug that would help me relax…

The Ol’ MJ
Of course, that drug COULD be the Medical Marijuana for which I’ve been approved, but I’m STILL waiting for my Pharmacist interview I have to go though to actually get PRESCRIBED anything.  Dang.

Mouth Of Sore
Aside from the mental wilderness into which my brain has wandered, physically the week of Chemo is catching up on me.

My mouth is one huge sore.  All along the edges of the mouth, in the palette and tongue and along the sides it feels as though there’s a constant fire going on all the time.

Ice, jello, ice pops and cold drinks are my friends.  Unfortunately, the more ice I take in, the more I have to make my way up to the bathroom for more good times, and the more exhausted I get.  A vicious ice circle.

Swallowing is becoming very difficult.  I think I need to start using straws, because even a small mouthful of ice water (or any beverage) makes it SO difficult for me to swallow.  I fear choking, or at the least a coughing fit because THAT really hurts my chest so badly.

The only foods that really go down smoothly are ice cream type of foods, ice pops, mochi, kulfi, all kinds of iced dairy treats!

On a side note, due to the kindness of my neighbor, Kristen, I’ve been able to make a bunch of YoNaNa frozen banana dessert, which helps me get potassium to fight the leg cramps (another side effect haunting me all night) and allows me a creamy treat without a great deal of dairy, which can play havoc with my digestion these days…

My hair is starting to fall out (not a ton, but it’s very obvious in the shower) I KNEW that would happen, I was told by my doc, and it’s not something that troubles me too much.  I’m cool being bald for a bit, and if my hair never grows back I think I’d be fine, too. I think…

The exhaustion has reached a whole new level.  Just getting OUT of a chair takes me as much mental preparation as getting ready for the first leg of American Ninja Warrior*

Sitting up takes more effort than I can muster some days, and THAT is a very frustrating and frightening aspect of this recovery.  I was prepared in part for the exhaustion, but I was NOT prepared for the weakness I feel in every aspect of my physical being.  I can’t sit with my legs up and cross them without help.

This is — hard.  That is the best word for it. Hard as a rock.

Audio hallucinations seem to haunt me before bed and when I first wake.  Sometimes visual oddities pop up, too; feeling that I’m seeing — someone — out of the corner of my eye.  It’s weird, but it’s also comforting in a way, as if I KNOW the voices I’m hearing and they’re just in the other room, laughing and having fun.  This is weird, I know, but Gerry used to get the same sensation (and I think he still does sometimes) so I know I’m not alone in this.

SO here I am, whining and bitching, sitting and inviting all of you into my stream-of-consciousness moan about my health.  Today is a rough day, let’s hope tomorrow is a better one!

*No, I haven’t actually PARTICIPATED in ANW, I’m just going by how impressively the contestants psyche themselves up before that first round… 

Japanese Milk Bread

I love baking.  A year ago I was all about the cake, this year I’m more about bread.  It makes sense, bread is slower, there’s less timing involved, and it’s easier for a person with pain and exhaustion issues to plan out a loaf and deal with it ON MY TERMS.

I can move slowly through a bread recipe, feel I’ve made something special for my family, and NOT knock myself out trying to make something special and memorable.

There are SO many excellent bread resources out there that I’m not going to even TRY to list them.

Right now my favorite source of recipes to try for bread items is the King Arthur website.  In full disclosure, I’m a member of their baking club. I pay a certain $ each year to get free shipping on my orders and other little treats.  

It’s a luxury, but when I break down how cheaply I can whip up a loaf of bread for the family, and how much they enjoy it, it actually makes good sense, financially.

Bread + Pain Strategy
So this morning, waking at 2am with intense pain (2 is when my 8-hour Oxycodone wears off, and at this point I could set my clock by the pain) my strategy has become to

  1. Take my 2am pain pills (short lasting Oxycodone for breakthrough pain)
  2. Get up and take care of nature’s call
  3. Try to stay in bed for at LEAST 1/2 hour
  4. Read a bit from my current bedtime book

If all of this leads to me falling back asleep, then I am what’s known as le Happy Camper.

The kids won’t have hot, fresh bread waiting for them in the morning, but they WILL have a well rested, happy, mom, and that’s worth EVEN MORE!

However if, like this morning, pain won’t abate until I move a bit, I get up and wander the ground floor of the house, putting stuff away, emptying the dish washer, trying to do anything that isn’t too noisy.

If I’m still awake at 6am, I can take my entire pain pill regime (three times a day, 6am, 2pm, 10pm.)  To my list this morning I added, “Make Japanese Milk Rolls!”  Because – why not?

Soft Bread
I like soft bread, and I cannot lie.  Recently I like it even more.  When approaching a chewy crust of bread, I tense up a bit as hard chewing can really bother my teeth these days.  I’m such a sensitive flower…

I love this recipe from King Arthur Flour because it uses a warm milk starter, called a

Sometimes I like to bake my Japanese Milk Bread Rolls with an egg wash & sesame seeds.

“Tangzhong Starter” which really does seem to make the bread soft and easy to eat.  When I was a kid my dad used to buy a loaf of bread called, “MIlk Toast.”

I don’t know if this was an Ohio or WV thing, but we’d get this special bread at A&P, in a blue wrapper, sliced VERY THICK.  I remember it was a soft and comforting bread, and my dad would toast it, then cover it in cinnamon and sugar and warm milk and eat it like a pudding.

These Milk Rolls give me the same feeling when I eat them.  There’s a pleasant density and softness to the bread that makes me feel like I’m 5 again.  This is wonder bread, x100 for taste and texture!

Japanese milk bread roll with jam!

Once I’ve created the starter (I do it 30 seconds at a time in the microwave) and mixed together all of the ingredients, I knead it in my mixer, then give a few extra kneads on my table and put it in a buttered, covered bowl to rise.

60-90 minutes later, the dough’s been raised and it’s time to shape it,

Versatility
At this point there are a number of ways to utilize the dough.  One of my favorites is to create the above rolls, which are very easy to make.  If I feel the need to fill them with spices or nuts or chocolate or cheese, it’s easy to do and makes a beautiful change up from plain bread.

Japanese Milk Rolls baked as a loaf

Other times I roll the dough out into a rectangle, fold it up in thirds (like a business letter) then turn under the edges and slip it into a loaf pan.  Once again, when folding the dough I can add fillings to different section of the bread if I feel so moved, and can make a sweet or a savory treat.

I’ve used this recipe as the base for a nice Babka, too.  It’s such a versatile dough!

I think this morning I’m going to make a kind of cinnamon roll using a nice mix of Cinnamon, Cardamom, Nutmeg and a bit of Vanilla. That sounds like it would be great with a cup of coffee (I seldom drink coffee, but this morning I might!)

When the bread’s had a second rise I’ll roll a Cinnamon-Spice mixture into the dough, then do some creative twisting and try to make something pretty.  Once it’s baked up, I may add a bit of icing and there’s Sunday morning, done and dusted!

What About The Gluten, Annie?
And, for those of you keeping score, YES this is filled with gluten.  But I’m using an organic wheat which should guarantee that a Monsanto product wasn’t used in the harvesting of the grain.

I was experimenting with using organic wheat vs gluten free, and felt that I was having some good success, and then the cancer happened.

I’m so full of various pain killers that I wouldn’t even FEEL the side effects that I’d been chalking up to eating gluten.

So I’m giving myself permission to eat a bagel every now and then, and I’m ESPECIALLY giving myself permission to eat a wheat product I bake at home using organic wheat.  So far I haven’t had any terrible side effects from this, the pain I feel tends to line up with the pain from my lymphoma and metastasized tumors.

So, whether you consider yourself a baker or not, I have found this recipe to be a VERY good soft-bread, and not really difficult to make at ALL!

I hope you’ll give it a try, and let me know how it turns out!  From start to finish this generally takes me about an hour’s work and a few hours of rising/waiting.  Perfect for a 2am wakening on a slow pain-filled morning.

SO who wants to come by and have some bread?

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!

The Places In My Neighborhood

In 2016 we decided to downsize from our lovely home over in the Crocus Hill area of St. Paul to the East Side, by Lake Phalen.

It’s a different neighborhood — slightly less ‘well off’ — but dynamic and beautiful.  It’s an area where folks have lived for generations, and new folks are moving in and starting their own traditions.  We really love it, and love the neighbors we’ve met along the way!

I’m supposed to try to get out and do some walking each day, to keep my strength up and make it easier to transition back to ‘healthy person’ when this cancer thing is over.  For years WALKING has been so terribly difficult for me, it’s one of the reasons I’ve become an avid cyclist. But with my walker, it’s much easier to get around.

Hopefully I won’t be walker-bound forever, but right now it makes life much easier.

So each morning as soon as the sun’s up I get out for a nice walk in the cool of the morning.  Here are some of the sights I see on one of my daily walks:

Big Beautiful Sunflower With A Bee, Down The Block

Hmong Neighbors Mean Nice Pho!

I’m attached to my pump through my port

My Chemo Pump Is My Constant Companion

I LOVE This Tidy Bungalow!

Lovely, Shady House With Happy Fence

 

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…

My Favorite Story

Gather ’round, kiddies, it’s time for Granny (me) to relate the famous story of How I Met Your Granddad.

I’m writing this as if future me is telling
yet unmet grandkids our story,
because that’s the dearest wish of my heart;
that I will someday be able to meet a grandchild,
and hug them,
and teach them cool stuff.

There was a popular 1980’s movie starring Mark Linn-Baker and Peter O’Toole called, My Favorite Year  It’s a lovely, warm film about a young, father-less, TV writer’s first real job in the industry, his adventures with a movie star who he has long idealized as the ‘perfect dad’ and the way he deals with the disillusionment of learning your heroes have feet of clay.

Go — watch it — I’ll wait.

I love that movie. It came out the year I graduated from college, I thought I wanted to work in TV, and I love Peter O’Toole.

Fast forward 10 years, it was 1992 and I had just been awarded my MFA in set and costume design AND had been initiated into Local 629 United Scenic Artists Union (USA)

Mom, I MADE IT!

After spending the summer designing costumes for a huge outdoor theater fest in central NJ, I’d snagged my first real job on Broadway as a costume assistant on a musical based on My Favorite Year, to be staged at Lincoln Center.

The size of the house determines whether a play is on or off Broadway, but my memory was that this was designated a “Broadway” production.  I may be mis-remembering.

Working with designer Patricia Zipprodt, who I’d long admired, was heady stuff. Even more heady was being assigned to be the “shoe buyer” for the whole production

There were some triumphs (finding shoes to fit tiny male dancers’s feet, shoes which were perfectly in period and beautiful!  Thank you, Nordstroms!)

Mr Curry On Stage, Comfy In His Well Broken-In Shoes

And some debacles (getting shoes re-heeled in the wrong size so the dancers kept getting stuck in the ‘tracks’ along the set – dang!) 

But anything I did wrong was fixable, and I did a LOT wrong.  But I did some stuff right.  And I learned SO much. And it was my first BROADWAY SHOW.  And I was happier than I’d ever been in my life.  It was a reason for celebration, and my mom and her good friend Ruth Clark flew out to witness my triumph as 4th person mentioned in the program under Costume Assistant.  Could life get any better?

When one works in costuming, the day the show opens your job is essentially over and wardrobe (a different union) takes over.  So upon opening of My Favorite Year I finally had my weekends to myself and began pondering what would be next in my brilliant career as Broadway Shoe Buyer.

THIS is how one pays for that $20,000 degree in folding
I’d just acquired at Rutgers, one shoe at a time.

In a side note, the star of the musical, Tim Curry, happened to wear the same size shoe as myself (European 42)  He had MANY pair of shoes, and I was responsible for breaking them in, which was fun and pretty damned cool.  Yes, I have walked in Tim Curry’s shoes, and I can say that he was a delight to work with!  And thank GOD none of the shoes were stilletto 6″ heels.

Hirschfield sketch from the NY Times. Heady stuff.

Also in the cast were my personal heroes Andrea Martin and Lanie Kazan.  Could a young wanna-be designer get ANY luckier than to be able to work with such a kind, funny and exceptional cast?

The show opened in Fall 1992, and not long after I found myself at home, in my teeny-tiny Brooklyn apartment, listening to NPR on a Saturday morning and calling in to try to become a contestant on the Wisconsin Public Radio game show, Whad’Ya Know? which was broadcast live from Madison, WI.

I actually got on the air, and I answered the qualifying question (“Which couple was the first to SHARE a presidential bedroom, not have separate rooms for President and First Lady?”) by, basically, begging the host, Michael Feldman, for the answer.  (The Fords)

Home Sweet Tenement, 106 President Street, Apt 2R, Brooklyn. Or, as my father in law called it, “The Love Grotto”

I was paired with a fellow from the studio audience named Tom, and together we proceeded to win the BIG KIELBASA of prizes.  I’m afraid that I talked pretty much non-stop, which I do when I’m nervous (and when I’m not)  I’m a talker.

Poor Tom didn’t stand a chance.  I think he was able to say maybe 2-3 words.

I talked about me, my hair color, my purse, being from the midwest.  I talked about Kilroy (as in Kilroy Was Here) and driving and making two different types of stage blood (edible and washable)

I did NOT shut up.

And we won!  I don’t remember if we shared the same prizes, but my own prize pack was a book on tape, a cat toy, a 36″ inflatable figure from the Edvard Munch paining, “The Scream” and a tiny chocolate cow.  All of them VERY Wisconsin Public Radio type of gifts.

And then I promptly went on my way, dining out on my very exciting
story of When-I-Won-A-Cat-Toy-On-NPR, which tells you a bit
about my friends at the time, and didn’t think much more about it.

UNTIL a few weeks later when, leaving my Brooklyn apartment for a long 3-bus trip to NJ to visit my dentist (I’d moved from NJ to Bklyn in late Summer, and still had some filling work at the U of NJ Dental School to get cleared up.) I discovered an odd letter in my mailbox.

My dentist was Vinny, a southern NJ cutie who was just about the most handsome dentist I’ve ever met.  I loved Vinny, we had a great rapport and he did a lovely job on my teeth. There is NOTHING like a handsome dentist to get a girl to floss.

So stopping by my mailbox to pick up reading material for the bus rides, I was confused to find an envelope with a Queens, NY return address, but a postmark from Madison, WI.

The letter was — Odd. This was happening during and after the 1992 presidential campaign, and the letter opened with a quote by Admiral Stockdale, Ross Perot’s running mate, which (being a bit of a politco) I found amusing.

“Who am I?  Why am I here?”

Then the letter went on to explain that the writer was in fact living in Queens with his brother after recently relocating from Vermont, but had heard me on the radio and thought that he would like to meet me.  He stressed that he had NO IDEA where I lived, that Ruth Ann Bessman, the producer of Whad’ya Know, had agreed to forward his letter on to me.

So there we were.  Would I like to get together and meet?  He understood if I already were seeing someone, but he thought I sounded “nice” and “funny”

I had NO idea what to do.  I showed Vinny the letter and he thought I should just walk away.  I showed a group of undergraduates from The Stern Yeshiva For Women (the cast of a production of the Dybbuk I was designing) and they all thought it was VERY romantic!

I showed my married friends, and my single friends, who pretty much lined up with married friends warning me off, single friends saying, “Go for it!”

I compromised by sending a Christmas Card.  And I waited.  And apparently the card got lost under a stack of mail at Gerry’s brother’s apartment.  When he finally found it, it was late December.

So Gerry called, we met at the famous Peacock Cafe in Greenwich Village just to have a cup of coffee and scope each other out.  The date was Dec 23, 1992, and on the way I ran into a friend and cast member from My Favorite Year on the subway and told them all about my upcoming adventure.  They told me they had a really good feeling about the meeting.  They were right.

All I knew about Gerry was he was 5’9″ and had a beard.  At that time I was about 6′ and was at my thinnest (I think for about 36 minutes in 1992 I was a size 12, this was that period) so I figured my height wouldn’t be a deal breaker.

This is how tall women used to think about dating smaller men;
if our body mass is relatively equal, it will be okay.

I, being a Virgo Methodist from Ohio, showed up early. I swear that EVERY man in the greater NY area who was 5’9″ with a beard was at the Peacock Cafe.  It was a veritable CONVENTION of them. I should note here that Gerry INSISTS that he NEVER told me he was 5’9″  But I swear he did. And I also swear he WAS 5’9″  So there.

With my recent compression fracture in my spine, I’m currently 5’9-1/2″,
so I understand how important that half inch is.

After asking, and dispatching, a number of bearded fellows, I looked up at the front of the restaurant and saw the sweetest guy looking SO nervous in an ill-fitting jacket. My immediate thought, “I can work with that, I can make him look better…” 

I walked up and asked him, “Are you Gerry?”
Gerry: Yes.  Annie?
Annie: Yes.  I have a table in the back, it’s a bit nicer, let’s move there.

And that brief conversation set the tone for our entire relationship.  We can always do better, and let’s move to my table.  Odd, how those things resound through the years.

I don’t remember Gerry eating anything, but I had a bowl of Minnestrone soup and it was delicious.  Then we went for a walk around the village, and ended up at the Prince Street Cafe.  It seemed like a nice date, but nothing earth shaking.  And then we noticed that all of the chairs were upside on the tables and the wait staff was eager for us to leave. We’d closed the place down, and I felt as though I’d been talking to one of my best friends for 3 hours.

Gerry walked me to my subway stop, a brief little peck on the cheek kiss, and we agreed to get together again.

Of course, that proved to be more difficult than we’d expected.  Crossed wires left me with NO DATE on New Years’ Eve (for whatever reason, after asking me if I were free on NYE, Gerry felt that he was supposed to WAIT until I called him. I assumed he would call me, since he brought up a party he wanted to take me to…  Poor, shy, Gerry.)

We did have a few dates in January, then I asked him over to dinner on Feb 13 so we wouldn’t have Valentine’s Day pressure.  I made him my mom’s fried chicken with some veg and some starch.  Nothing spectacular.  But he fell in LOVE with it, and it’s become his favorite meal to make for me.  Gerry does most of the cooking in our household these days, he’s exceptional at it, and whenever he makes this for me it’s as if my mom is cooking dinner, and it’s lovely.

The Feb 13 date was when I realized that I loved this guy.

Not long after that I headed to North Carolina to work on a Japan-bound Arena Stage Production called LUCAS LIVE!!, featuring scenes from several block buster George Lucas films. My job was to make the Wookie costume and mask.  It was spectacular.

While away, I asked Gerry to cat-sit as I had found a stray a few months earlier, and evidently she got knocked up, and kittens were on their way.  I didn’t want to leave her alone.

One day upon returning to my hotel in Carolina, I had a message at the front desk, “It’s a girl, it’s a boy, it’s a girl, it’s a boy, it’s a girl!!” and the clerk said, “I REALLY hope we’re talking about some kind of animal…”

By the time I returned home, Gerry’d settled in, and he never moved out.  My neighbor across the hall, wonderful Rose Verde, had lived in a 600 sq ft apartment (the match of mine) and had raised 3 kids there.  She kept an eye on me, watched out for me, and was VERY concerned that Gerry and I were living together.  I promised her we’d be getting married, and then it occurred to me I should pass that by Gerry.

He agreed.

So much for romantic proposals.  It doesn’t matter in the least, because when you know, you KNOW.

We called my mom on Mother’s Day to share the joy with her.  My mom, a lovely and kind person, was also a child of her environment.  She was born in 1919 in West Virginia, her father had been in the Klan (although “only for a week, until he figured out what it was!” my mom always insisted) and, although she and dad had several Jewish friends through his business, she was a product of a different generation.

I knew we’d have to handle the matter delicately.

Me: Mom – I’m calling to tell you that I’m in love!
Mable: Oh, honey, I’m SO happy for you!
Me: There are three things you need to know about Gerry, though…
Mable: Ok…
Me: Number one – we’re living together right now.
[pause]

Mable: Well, you KNOW I don’t like that!
Me: Which is why I’m calling to tell you we’re getting married in August!
Mable: Well, that’s a relief!
[pause]
Me: The second thing is — he’s Jewish.
[pause]

Mable: Well, you wouldn’t be the first…

Please note how absolutely enlightened this is coming from someone like my mom.  I like to think Mom was just thrilled that he daughter wasn’t a lesbian.

Me: The third thing is — Gerry’s shorter than I am.  By about 4 inches.
[pause]
[pause]

Mable: Oh, honey.  Oh, HONEY.  Are you SURE you love him?

So the biggest problem my mother had was with Gerry’s height.

Eventually Gerry became so deeply entrenched in my mom’s
(and Aunt Wanda’s and Cousin Jan’s) hearts that they told me if we ever divorced,
THEY would get custody of Gerry.  Thanks, family…

And THAT was how Gerry and I met.

One of the plot points of My Favorite Year was that it was the year the protagonist began his career AND found love.  And the same thing happened for me.  Which is why 1992/93 will always be my OWN favorite year!

This Monday will mark 25 years since Gerry and I were married in Judges chambers in Brooklyn.  The next day we had a more spiritual ceremony with no minister, but led by my best friend and his brother.  A lovely day.

We remain two of the luckiest people in the world.  At this point we’re sharing cancer (he diagnosed with Multiple Myeloma, a bone marrow cancer, in 2006 – myself with Lymphoma, a blood cancer, diagnosed this July) but I wouldn’t trade anything for our 25 years together, and our amazing family of gingers.

Max and Andy at Uncle Joel’s & Aunt Takako’s Wedding

I love you, Gerry.  You make me the happiest woman in the world every day!

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.