Tag Archives: multiple myeloma

Embracing Dreams

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We have made it to New Mexico, we have done almost everything we wanted to do to prepare to live the creative life that we’ve imagined, and just as we are coming to the completion of all our big projects, we are out of money.  Not bad timing.

But oh, what we have done in a year, and that is because Sarita and I create a dream, and then we plunge into making it come true.  When we told a former principal at our school what our plan was, she said we should just take a leave of absence (not quit) from our Bay Area school, in case things didn’t work out as we hoped.  But that is not our way.  We follow the path, and if things don’t work out, we go a different direction.  But we don’t ever really go back.

The advantage of having a cancer that reappears, is that there is no time to waste.  So once we figure out what we want, we just go for it, and watch it become reality.  We now have a beautiful barn, a big lot that is empty and waiting to be internally fenced, a new house/studio filled with all kinds of fiber, material, yarn, mementos and favorite furniture, and the prospect of four baby alpacas coming in early June.  We’ve worked hard, we’ve hired wonderful workers who’ve worked hard, we’ve tried to be patient through the weather and the time frames of others, and we’ve done it!  I can hardly believe it.

It’s not as though we were waiting to live until it’s all done.  We’ve been living, and it’s been busy and sometimes a little crazy, and a lot of fun.  But soon we get to have a different kind of fun — with our new babies, and all the creations that we make in our new studio, and hopefully, with visits from our family and friends.  And of course, there are always more projects to add in any time, like building a chicken coop, etc.

Now I’m faced with my cancer creeping back, and all I want is to have a good amount of time in this new life we’ve worked so hard for.  It might be too much to ask for, and when fear begins to envelope me, I feel as though I should just quit everything, and succumb to it, because it’s so hard to fight.  Then I tell myself, I am not dead, and even if I never get to wear the things I’m sewing or knitting, even if I never paint another wood mandala, even if I never write another song, I am enjoying the process of sewing and knitting, the process of playing folk and country music with my friends, performing informally for various places in the area, and coloring in my mandala coloring books, one of my most peaceful activities.   I still feel healthy (or at least, healthier than I’ve felt for the last five years), and I don’t want to rush back into the regimen of drugs and chemo.  A multiple myeloma webinar I heard last night, said that once I have to go back to drugs, I will never be off them until the disease is over. And I know that means until I am dead.  So now I have about 2 1/2 more months without chemo (maybe more if I’m lucky) and I need to take complete advantage of that time.

Hanging the clothes out to dry, picking up glass from the alpaca lot (which has endless broken glass, nails, etc. from its former life as a vacant lot), baking honey buttermilk bread,  snuggling with the dogs, knitting while watching “Outlander”, learning a song with my group that I used to sing to my daughter when I brought her home from the hospital — these are the things that bring me joy on a daily/weekly basis.  I’ve also made the decision that I don’t want to travel at all, outside of a trip to my parents’ house in Michigan.  Traveling is too stressful, and I basically don’t want to be anyplace else.  Even traveling and exploring this area might not happen.   I don’t regret any of my travels, but I mostly did them because I thought I should, and because other people wanted me to.  Sarita and I are stay-at-homes, and I’ve decided to just embrace that completely.  Feels good. Actually, feels like a relief.

When I thought I was dying before, I had this urge to give stuff away.  I did give away a lot, some I regretted later, but only a little.  I am having that urge now, but I am going to resist, because I’ve just “decorated” both homes so carefully, I want to enjoy everything until the very last moment. Putting the pictures up was the last decorating act, and they are incredibly satisfying.  The art work of my family members and friends, the pictures of my kids, grandchild, and niece and nephew, the picture of Sarita and a brother, and me and my sister, framed together in a sweet gold frame — I love looking at these every day.

So mostly, it’s about enjoying every single hour (not about what I accomplish), and it’s about staving off fear, because I know that is detrimental to my health.  And it’s about lots and lots of talking with Sarita.  We can spend a few days and nights talking about the things we fear, and the decisions we need to make when one of us dies, and how to live on the small amount of money we make, and then when those days are over, we both have a sense of calm and peace, at least until the next issue comes along.  But I have no doubt we can work out anything.  We have only been together 8 years, but several of those have been quite challenging ones. Luckily, we both have a belief about being together in a next life, so it doesn’t really matter how many years we are able to have in this one.  We found each other, and that’s what counts.  Whenever death takes me, I can say I have known what happiness is, risk, intensity, pain,  and love.  I have lived.

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Blog Effect

Cover

Sarita is writing a wonderful graphic novel about the first year I had multiple myeloma — bone marrow cancer.  She is putting it on a blog as she colors it — about one page per week.  www.donkeyinalbany.com  Amazing how much work it takes to color and get the shadows just right.  But it is magnificent. She says it’s a story about herself as the caregiver that year, I say it is a story about me as the cancer patient.  She really wants to get it out to other cancer patients and caregivers, and so she’s decided to put it on the internet for free, but also with the hope that eventually it will be picked up for publishing.  The exciting thing, is that the International Myeloma Foundation has decided to include it in its online weekly newsletter, as well as its printed quarterly newsletter.  We are both thrilled that it will get out into the community.

The book is about the scary beginnings of my disease, and the difficulty in diagnosing it, and the effects on my body and our lives.  I had to quit teaching, I could barely sit up, the numbness from my tumor was creeping up to my chest, and I was taking tons of ibuprofen because that’s what my doctor told me to take for the “stress” that was making my ribs hurt.  (Of course the ibuprofen had other effects that made me miserable.)  Then it goes on to my diagnosis, my chemo and radiation, my vertebroplasties (back operations where they pound “cement” in between the vertebrae to keep them from collapsing), and eventually my stem cell transplant.  I was so afraid during all of that, but reaching out to people in the myeloma support group in the Bay Area helped, because I saw that they were regular people like me who had survived many of the same things.  Well, I guessed I could too, although the prospects felt horrifying.  At least I had Sarita, and that really made all the difference to me in deciding to go for it.  She was always supportive, always there, always encouraging me to keep going.  And even when it didn’t look so good, she was there to talk to me about death, read books, do meditations, and think about the afterlife.  That was just as important to me.  It is unimaginable to be unable to talk about death with my partner.

Now as I read each page again that she is working on, I have a flurry of feelings.  Sometimes I can’t remember, because I was in so much pain, or was so drugged up, or it is just too much for my emotional self to recall.  Sometimes I remember vividly, and I shudder, because it feels like I’m living it again.  Sometimes I just appreciate the beauty of her work, her perfect depictions of us all, the beautiful colors, the body lines that show just what we were thinking and feeling.  And sometimes I feel just plain scared again.  But not as scared as I was when I was living it the first time.

Because my myeloma is starting to creep back.  It’s coming back slowly, very slowly, and it’s not time to make any decisions yet, because it hasn’t affected my kidneys, and I’m still feeling good, but the time will be coming when I have to make some decisions.  In four months I may have to have another bone biopsy.  At some point after that I may have to decide on chemo again, or, as my doctor would prefer, another transplant.  Yikes.  I’d told Sarita I would do all that once more, in order to hopefully get a few more years, and I absolutely know that I can do it, based on my previous experience, but it sure isn’t something to look forward to.  It means I will be sick for a year or two, have to get all my immunizations again, eat yucky food, if I can eat much at all, and not touch plants for a long time.  Just when we are getting ready to plant a garden and trees, and I am trying to grow flowers.  Well, I can handle it, I definitely can.  And I’m in my true home, in a state that I love, in a community where I feel comfortable.  And it hasn’t happened yet.

The truth is, there is a lot of research on myeloma, one of the rarer cancers.  There are a lot of chemos out there, a lot of clinical trials, a lot of choices.  Unfortunately, the people I know with this have not fared so well, but I have to remind myself that every year there is more known and more possibilities for tackling this cancer.  Because it’s in the bone marrow, and most patients have auto transplants (which means we give ourselves our own stem cells, which are as free of myeloma as absolutely possible but never completely free), it means that the myeloma never really leaves us.  There is no complete remission.  I am constantly reminded by all doctors, that it will eventually come back.  It’s a matter of keeping it at bay as long as possible.

So all of this is to say, I love Sarita’s book, and I love all of that being in the past (so that I thought about it as little as possible for the last two years), and I’m just starting to mentally prepare for it to happen in the future, but meanwhile, I’m living like a banshee.  Doing exactly what I want, working really hard not to feel guilty about anything, and being grateful every single minute.  It’s a very good way to live, I wish I could have done it in my earlier years.  I am happy every day, and looking forward to every activity, even if the activity is coloring in my coloring book while watching netflix.  Whatever happens, I am a lucky woman.

 

Re-birthday for Myeloma Survivors

What the heck is a re-birthday anyway?  I can imagine many people saying it’s just another excuse for a celebration and presents.  For me it’s a very personal celebration, one that Sarita and I appreciate with bittersweet memories, although I have a hard time remembering the date, because on that date 3 years ago, my mind was only half there…

We had done a lot of preparation for the bone marrow transplant, or stem cell transplant as it is often called.  I was terrified to go through this process, because I knew that the point of it was to practically kill a person in hopes that the cancerous cells in the bones would mostly die,  and then they could have a fresh start with new stem cells that did not have cancer. I had to go through tests on my heart, tons of x-rays on my lungs, breathing tests, blood tests where they would take over 15 vials of blood, classes on the procedures I would have to go through, consultation with a nutritionist about how to eat, and on and on.  Sarita patiently took me to all the appointments, learned how to give me injections, waited while I had my tests, and talked with me to all of the many doctors, nurses and technicians I had to see.  We had to arrange to move to Mountain View for a month so that we could go into Stanford every day, we had to find someone to live at our house with our dog during that time, and we had to arrange  two surgeries for my back, so that I would not have to wear the back brace as well as the hepa mask during the whole thing.  I did not want to be helpless to that awful back brace during such a difficult time, and since most people going through this “outpatient” procedure at Stanford ended up in the hospital for a while,  I did not want the repeat experience of being in the hospital and unable to take myself to the bathroom.

The only test I actually failed was the breathing test, because I’d been wearing the back brace for so many months that I’d learned to breathe shallowly, and I couldn’t breathe deep enough or hold my breath long enough to pass the test.  Plus the technician at Kaiser was totally freaked out by my back brace, and was not very flexible. So I played harmonica to strengthen my breaths, and re-took the test at Stanford, where they were much more lenient, and I passed. Phew.

My back surgeries went pretty well.  My spine was collapsing so badly, that I had to have “vertebroplasties” which are when they put a very hard agent called “cement” between the vertebrae so they are kept in place. They didn’t put me all the way out, so I could feel the doctor pounding the “cement” into my back, and it hurt.  They can only do 3 or 4 in one operation, so I had to have two because I needed cement between 8 vertebrae.  After the first operation I asked if the doctor could use more sedative because it had hurt so much, and he said no, not unless I wanted to die.  Okay then, pain it was.

Winona, my daughter, the only other person my dog likes, consented to living in the house while we were gone, thereby solving a huge problem.  We will always be grateful for that.  We found a motel with a kitchenette that cost less than Kaiser was willing to pay per day, and it was about 15 miles from the hospital.  I commuted down to Stanford to get the port (or whatever it’s called) put in my chest, and to get my heavy duty chemos before the transplant.  I had a two day hospital stay for each of those chemos, but then went home.  Interestingly enough, Stanford usually does three chemos before the transplant, but the one in the middle was one I’d heard other hospitals did not do, and it was a really rough one.  I’d asked my doctor if we could skip it, and he said no.  But when the time came to do it, the whole country had run out of that chemo, since it was an older one, and there was no profit in making it anymore, and thus only one place made and distributed it.  They’d had one batch not work (for some reason), and got behind, so it was completely unavailable for an unknown length of time.  We were on a bit of a timeline because of wanting to be finished with the whole process so that we could have a week or two in New Mexico before Sarita went back to teaching (which is what I was living for), so I asked my doctor again, could we skip it?  This time the answer was affirmative.  Sarita always said my wishing things created magic in the world!

One big final thing had to be done after the chemos and before the transplant — we had to have my stem cells collected.  For multiple myeloma, most people use their own stem cells after all the chemo and hopefully all the cancer cells are dead. This was in April, and Sarita had organized our family and friends and some school folks to walk in the multiple myeloma walkathon on a particular Sunday.  She had designed t-shirts for our “team” which were a beautiful spring green, with a logo of one of my tattoos on it.  Suddenly, we found out that was the very day I had to go in and have my stem cells collected.  Our wonderful team went on without us, although we wore our shirts to the hospital in support.  We were sad not to go (although I was probably going to have to be in a wheelchair much of the time), but glad to get on with the process.  Happily, they got enough stem cells in that collection, because later when I went to give again for “just in case they needed them,” I did not have enough.  Not even the shots I got for days and days to stimulate my body’s creation of stem cells worked anymore.  That was a little scary.

So we moved into the motel with Sarita’s drawing tablets, our guitars, our blender, the laptop and a few clothes.  We went to Stanford every day.  I was wearing a hepa mask whenever I was out in public, and I looked like an alien from outer space.  Really.  It was pretty awful, and I was also still really sick from the chemo.  About five days after I received my own stem cells on May 25, I spiked a bit of a fever.  Basically I had no immune system whatever, all the vaccinations and immunizations I’d ever had were kaput, and I had nowhere to go but down.  So they put me right into the hospital.  I was in a fog.  I slept, I remember there was a stationary bike in the room that I was supposed to get on every day (but I don’t remember getting on it), I woke up when people came in to check on me (and there were big groups of doctors and students sometimes… one doctor used to joke with me and I remember joking back, but later when I met him again, he was hurt when I couldn’t remember him).  Mostly I remember Sarita sitting over in the corner of the room playing the blue guitar I had bought which she was teaching herself to play.  That was incredibly comforting.  My room was in a ward with other transplant patients, but we were all in private rooms and fairly isolated because of the immunity problem.  Once in a while I would take a walk around the nurse’s station.  I have to say, Stanford was a pretty nice hospital to be sick in, but the whole thing was kind of vague for me.  I was there for 10 days.

After that we went back to the motel, where poor Sarita had to badger me to eat and drink every day.  I was not interested in either, and especially hated the vitamin smoothie drink that I was supposed to have to make sure I was getting what I needed, since I wasn’t allowed to have anything that was not cooked or canned, and I was throwing up all the time.  In fact, I started having trouble seeing about then, because a big black spot appeared from where the retina became damaged from throwing up so much. I slept a ton.  Sarita forced me to walk outside every day, we watched TV and movies on the laptop, I played a little guitar, and as I got better, we went out on short shopping excursions in the Palo Alto area.  She needed clothes for the starting of school, so we found REI, the Vans shoe shop, and other such places.  I always had to wear my mask, and was afraid of getting sick in the stores, but it was good to be out of the motel room.  I will say, it was an incredible bonding experience for us.  The only times we had that were difficult, was when I was being stubborn about eating or drinking and she knew she had to make me.

I never thought I would live through it, but I did, and now when May 25 comes around, and it is considered my re-birthday because my whole body nearly shut down and had to be re-booted, I realize how lucky I am.  Lucky enough to have had the opportunity for this procedure, lucky to have my incredibly dear Sarita, lucky that I have now had 3 years of life since that time.  And although I told Sarita at that time that I would never do that again, I now have said that if I had to, I’d do it once more if the doctors thought it would give me more years of living.

When we were able to check out and come home, I still had to go to Stanford for checkups, and blood tests, and warnings that my kind of cancer comes back, so be prepared.  But Sarita and I were able to go to one Bone Marrow Transplant Reunion, where we met and saw people who have lived 5, 10, 15, 20 and I think even 30 years past their transplants.  It was truly inspiring, and hopeful.

At that reunion, people spoke about their experiences and Sarita and I sang the song I’d written (with her help) about what we’d gone through with my cancer.  The bridge tells all about the transplant part:  Now I’ve got a whole chestful of tubes, and miles of tape stuck to my boobs, and I’m throwing up in containers everywhere.  I’ve got a hepa mask to keep the germs at bay, but I’ve got a good woman who loves me anyway.  One thing I’ve learned about living, it’s all about love.

We don’t celebrate a lot of holidays.  Christmas is a favorite, and each of our birthdays takes a whole month to celebrate, and once in a while the solstices.  But the re-birthday is at the time when spring is getting ready to become summer, and when I remember that I am still alive and retired and pretty much get to do what I want, and when Sarita and I remember that experience that was unlike anything else in our lives.  I hope this is a holiday that I get to celebrate for many more years.

 

In case this link doesn’t work, my song is on Soundcloud, at CaseyWayland, and it’s called, “Enough to Make Me Happy”

 

My cancer song — Enough to Make Me Happy

alien mask

This is the (revised) song I was writing when I was going through my bone marrow transplant.  At the time we had to move to a motel in Mountain View for a month, and fortunately we had taken the guitar.  It was hard for me to hold and play because I had a pretty weak back, but I managed to do that just enough to write this song.  Of course, Sarita was an incredible support. As you can see, writing songs really does help me process and survive everything.  Sarita and I sang it at the bone marrow transplant reunion that Stanford had one summer as our testament to survival, and we had a lot of fun.  Many people told us afterward how much they could relate to the very specific things the song talks about that are part of the treatment.  Because of all that’s been happening around me lately, I’ve been thinking of this song, and it’s good to remind myself that I’m still alive and still very loved and loving, and these are the important things.

Enough to Make Me Happy

When I was young, how I looked, and who I got to hang out with

Were all that really mattered to me.

At 18 I married a cute, young guy, we’d go on sunny Sunday drives

Our motorcycle for everyone to see.

 

Chorus

Now I’ve got a bald head through and through

Still I’ve got my dog and I’ve got you

And a good guitar, and that’s enough to make me happy.

 

Life ran along, age caught up to me with changes in my family

The job I loved began to take its toll

Seemed all I did was not enough

My kids were acting really tough

A peaceful weekend was my only goal.

 

Then sickness came, my ribs hurt in the early part of December

The doctor said,  “Don’t worry, it’s only stress.”

So I sat in a hot tub, got a massage,

Spent hours on the treadmill in my garage

But with all that, I still felt like a mess.  (Back to chorus)

 

Went out of town, to get a break from crazy California

And the doctor who couldn’t make up her mind.

Lived three weeks in New Mexico, then went to the chiropractor for

Some tests, it was cancer he did find.

Bridge:

 

Now I’ve got a whole chestful of tubes

And miles of tape stuck to my boobs

And I’m throwing up in containers everywhere.

I wear the Hepa mask to keep the germs at bay

But I got a good woman who loves me anyway

There’s one thing I’ve learned about livin’, it’s all about love.

 

Just like the desert, my new life is opening up to all the spaces

Between the sky and the dusty, brown earth.

A thunderstorm may come along, I’ll show my balance is just as strong

Because I’m livin’ for all I’m worth. (Back to chorus)

 

Copyright 2011 Susan Alexander

 

 

 

 

 

 

 

The Power of the Flower

My grandma’s garden, as written about in the “Illinois Agricultural Record” probably in the 40’s : “The deep grassy ravine at her back door was velvety green.  The woods, showing clearly from her dining room window, were bursting buds in the newness of spring. Yellow forsythia brought golden light into her living room and grape hyacinths sturdily spread their cheer on the table by the window…it was because she loved flowers that she had been selected to serve as local leader on flower arrangements for the Centerville Home Bureau unit.”

(This came from the book my dad (Richard Alexander) wrote on his mom, called “Mom’s Story.” 1991)

My grandma loved flowers so much, that it was a nightmare of hers to think that she might have to move suddenly and not be able to take all her perennials.  Although she made it a “point not to spend more than one dollar a year on flowers”, she had over 50 varieties in her garden, and was known for her arrangements, made with containers she found in the cupboard, and  flowers she found outside. She started her hobby by painting an olive bottle black and arranging some marsh grass in it and winning first prize at the local competition.  Apparently, the other women were not too happy at being beat out by a “bunch of weeds”.

I am not like grandma in that I do not have a knack for arranging flowers, nor do I even want to learn.  I do not buy flowers for the house every week at the farmer’s market like my friend does.  I do not even plant tons of flowers outside my house.  But what I do plant, I love passionately. When I first moved into my house, I was in the yard every weekend, planting and digging up and moving what I’d already planted and planting some more.  It was so wonderful to have my own house and yard, that I couldn’t resist.  My friend now comments about the exorbitant amount of money I spent on this, but I couldn’t help it.  I knew what I wanted:  a magnolia in the middle of my front yard, a lilac near by, tulips and crocuses and hyacinth, an apricot in the back yard, some cacti, and some color. My thumb is not necessarily green, but California came through for me.  If a plant didn’t make it, I moved on, because so many plants thrived and grew  way beyond the bounds that I imagined, that I had an overgrown yard in no time!  (Then I had to learn how to trim back the plants — something I’m still learning!)

I love flowers for the wonderful colors, being a lover of color in everything, and wanting all kinds of colors to surround me at all times.  I love flowers for the wonderful perfumes they spill into the air, and for the wonderful smells they allow me to wear every day.  (My favorite is lilac, I would have been one of the little old ladies who always wore lilac as my signature scent, but it turns out that it’s hard to find these days.)  I love flowers for the welcome they give to all who come to visit, and for the happiness they bring just by their presence, something growing and blooming and filling the air with joy.  And I love flowers for the memories they evoke, the snapdragons that lined my Nana’s walk, that we used to pinch and pretend they were opening their mouths, the sunflower crown I wore at my wedding, made by my grandma, and the multicolored rose I planted for my second daughter when she was young, to represent all the colors in our family.  I will never be known for anything that has to do with flowers like my grandma was, but I can certainly relate to her love of them.

One of the songs I used to play and love was called “Give Me the Roses” and it goes like this:

Wonderful things of folks are said, when they have passed away

Roses adorn the narrow bed, over the sleeping clay.

Give me the roses while I live, trying to cheer me on

Useless are flowers that you give, after the soul is gone.

Let us not wait to do good deeds, till they have passed away

Now is the time to sow good seeds, while here on earth we stay.

Give me the roses while I live, trying to cheer me on

Useless are flowers that you give, after the soul is gone.

Now my long time friend has died of the same kind of cancer that I have.  She got it 3 years earlier than me, and was in the process of recovering from her second bone marrow transplant when her body gave out.  We raised our girls together, just a few days apart in age, after meeting in one of Berkeley’s more neglected parks, spending once a week for years, eating dinner and comparing stories and issues concerning our families.  Together we went through divorces, being single, marriages, and having siblings for our daughters, and we brought her daughter on several trips, as my daughter went on some with her family.  Although we weren’t as close as our children got older, we connected again, especially when I got this same rare cancer, and we discovered we even had the same strain of it.  We used to joke about what in heaven’s name we did to get the same cancer.  Now I am preparing to go to her memorial, still in shock that this vibrant, creative woman isn’t around.  Her husband asked that instead of flowers, we donate to the Multiple Myeloma Research Foundation, a wonderful organization that is getting new drugs approved as we speak.  I look forward to honoring his request, as I grieve and feel fear all at the same time.  But I will appreciate every flower I grow, every flower I get, and every flower I notice on the walks with my dogs, in honor of my friend, and the bright and colorful spirit she embodied.  As per the song, flowers will not do her any good now, but they can remind me of the importance of having joy while I live, and appreciating the colors, smells, and sweet memories of this world.