Home Sweet Home!

I am alive and well and so sorry that I haven’t posted in a while for those of you who I am not in touch with regularly.  I will pick up where I left off from my last post.  My two children and their families came to visit me that next weekend; my son on Saturday and  my daughter on Sunday.  Oh what a joy to see them!  They were all well so we hugged and just chatted for about an hour or so.  The grandkids weren’t bothered by my bald head – I love that about kids, they see you for who you are and love you no matter what.  It really lifted my spirits to see them all and especially my son and daughter.  They had been so supportive and caring with their texts and calls and cards etc through my whole ordeal.

At the time of the visit I had been going back to Hopkins 3 days a week to get fluids because the antibiotic I had been on for the infection I had had in my catheter had caused my creatinine to go up, creating a potential kidney problem.  My brother and I would trek over there those mornings, I would get blood drawn and then go to the outpatient clinic for oncology patients to get my fluids, which took two hours.  We did that for 3 weeks and finally the number came down!  That was Friday, April 17th and what a great day because the pic line came out of my arm and for the first time since September I did not have a catheter or line in my chest or arm – wow, talk about freedom! That weekend I realized that I could actually plan to go home. I still questioned myself on whether I was strong enough but once I made the decision, each day seemed better.  We had one more appointment coming up on April 28th for a bone marrow biopsy but my brother said he could just come and get me for that.  So I decided that Wednesday, April 22nd (Earth Day) would be “go home day.”  As my brother and I were pulling away from his house I said how I just couldn’t believe I was really going home.  He put his hand on mine and said it was real and look at what we’d been through.  I choked up as we recounted the days from February 12th and the many, many trips to and from Hopkins. And it was all behind us now.  It’s still hard to comprehend all that time away from home and everything that I experienced – kind of surreal.

My first night home and by myself, I laid on the floor in front of my fireplace and just looked around at my surroundings, so grateful to be there, so grateful for my beautiful home, my cat, and just all that was there – it just felt so darned good!  It’s been over two weeks now since I’ve been home and it’s so interesting how I have felt better every day in some way.  I’ve gained about 5 pounds which is a good thing, I’m stronger but still get tired and can’t climb big staircases without getting winded, but I’m getting there.  The mucous situation is way better and my appetite is good.  This past Wednesday I had an appointment back at Hopkins with my specialist.  It was an interesting experience to be there feeling so well!  My visit was very good.  All my white and red cells and platelets are all up there again and my two bone marrow biopsies show no detectable myeloma.  I am almost in remission and should be soon as this particular marker we watch drops a bit more.  Due to my having been in a trial I will have biopsies at 6 months again and one year and will be monitored for I think 3 years.  My “goal” in all this was to hopefully have years of remission so please keep praying that happens!  I am back to acupuncture and some other alternative therapies and feeling so well, with the exception of my stamina, but I know that will come in time.  I am reading a new book – Anticancer, A New Way of Life by David Servan-Schreiber, MD, PhD.  I only just started it but the reviews were good.  It’s actually a second edition and written in 2009.  The author was diagnosed with a brain tumor some 17 years ago and through his research and experiences he shares with his readers how we can take charge of our lives, whether we have cancer or not, through exercise, mind/body therapies and nutrition.  I haven’t gotten that far yet to get into those chapters but I am enjoying his writing and intelligence and personal experiences on this subject.  And he’s still alive and well after all these years! After I finish the book I’ll have to report back on it here.

And so my friends, thank you for following my journey, supporting me, praying for me and, well, just caring.  It all means so much to me – this love I’ve received from so many.  Since my diagnosis – 4 years ago now – I’ve chosen to learn from all that I’ve experienced, to know myself at a deeper level, and to know what is most important to me in life.  I don’t regret a moment!  But now that I am done with the transplant and a life of less doctors and drugs, I am choosing to let go again of being a myeloma patient and even more letting go of a focus on having cancer.  I am me and not the cancer and as much as it’s helped me grow, I want to get back to living a full and meaningful life and doing what I love with purpose and vitality.

Thank you for your love!!  Sending love back to you, Kathy

 

April Showers Bring May Flowers

The fact that I am writing this today makes me so happy – just because I feel good enough to do it!  Some things occurred that I hadn’t expected and brought my blogging to a halt.  Let me fill you in.

I had the two days of hi-dose chemo and the next day, March 6th, I got my stem cells back. That was transplant day.  It wasn’t a long process but I wasn’t comfortable because they gave me a lot of benadryl which hyped be up instead of calmed me down. But all went well.  The following week, I started to not feel so great and by Friday the 13th I was not feeling good at all.  My first thought that morning was that I didn’t think I’d have enough energy the next day to get up at 5:30am again, go to the hospital and do our usual routine.  When we reported how I was doing and feeling it was soon decided that I needed to be admitted to the hospital – no argument from me at all.  My room was literally around the corner from the out patient clinic so off I went.  Turns out that a side effect of this chemo can be what’s called mucositis, a painful inflammation of the mucous membranes of the digestive tract starting in the mouth. I’m told only 5% of chemo patients get this condition and only 1% get it really bad – well that would be me.  They treated me with fluids and IV antibiotics.  My brother spent every night there with me and with the exception of one night when one of my sisters subbed for him, he was there with me for 12 days because I was there for 13 days.  There were some other complications that delayed my discharge but that finally occurred on March 26th. Of course my expectation was that I would start to immediately feel better – NOT! I was still on antibiotics and other drugs but I had no appetite and food didn’t taste so good and additionally didn’t smell so good either.  I have been working these past few weeks to eat more but it’s been hard.  I am only now feeling a better appetite.  I lost about 15 pounds and I need those back to gain my strength back.   Today I am feeling like I can see the light at the end of the tunnel and that is a wonderful feeling.  I left my home on February 12th so I am kind of longing now to get back.  I am currently going every other day to Hopkins to get fluids and they are watching the labs closely.  My while blood cells are growing well.

So I ask myself what have I learned now from all this?  I pretty much accepted the situation and the hospitalization.  I was well taken care of and I think I kept a pretty positive spirit.  I got quite grouchy the last week in the hospital because they told me on a Saturday that I would be discharged Sunday, but they kept delaying that until finally the discharge happened on Thursday. Sometime after I was back at my brother’s I got down about not making any progress.  I wrestled with this feeling and felt bad about myself for despairing.  But then I bounced back realizing that I couldn’t focus on the future, I had to just be with what was in that day and accept it, knowing that it would eventually change – after all, everything does, right?

I SO miss my kids and their kids!  They are the first people I want to see when I get home.  Hugs will be big and long!  I know that day is coming soon. I will update again soon.  With love, Kathy

…On Losing My Hair

I am finally back!! Been really exhausted for the past 3 days and they say there’s more coming because the chemo takes 7-10 days to really hit.  I can’t wait.  My next blog will cover the re-infusion of my stem cells, but I wanted to blog first about my hair. Why do I want to do that?  Well, I have had a love/hate kind of relationship with my hair for as long as I can remember. As a child, my mother kept our hair cut short and always with bangs, but she could never quite get them straight so they usually were crooked right up to the hairline.  I always had bangs. My hair has always been very thick, wavy and curly and frizzy in humid weather.  I always wanted a nice loose swingy pony tail as a kid, but instead mine was short and compact – it just didn’t swing!  As a teenager my hair was long and I would iron it on the ironing board with a cloth over my hair.  I would use huge rollers to set it after washing and then would sit under a big hair dryer like old salons used to have.  This all took hours.  I had my Cher look going for a while, with bangs covering my eyebrows – very dramatic! The bottom line is that much of my identify and how I thought and felt about myself has been associated with my hair, and this carried through my corporate career and beyond. When my hair didn’t look right to me, then I didn’t feel good about myself.  Everything seemed to center around my darned hair and when I didn’t like it then I wasn’t good enough  to do or be anything.   So when I knew for sure that this transplant would wipe out my hair I, admittedly, was afraid, but then as I moved forward I thought that this could be a chance to know myself without hair and really discover myself in a whole new way.

On February 25th I had the first of the two hi-dose chemo treatments but I had already started losing my hair from the first chemo blast I had on February 14th.  So after the chemo I decided to go to the salon in the lobby of Hopkins and get some suggestions.  I had already previously bought a wig but this was more about shedding my own hair first.  The salon is a blessing for anyone going through chemo as they not only cut hair but sell wigs and other accessories as well. It’s such a feel good place. The stylist suggested a pixie cut – and OMG I loved it!!  I was so shocked that I liked it – but my eyes were so big and my cheekbones were prominent and I just saw myself in a whole new way.  I felt SO happy!  I bought a scarf that I could wear over my head which has brilliant colors in it and sweeps to the side, with a kind of illusion of having hair.  Although my pixie was short-lived as more of it has fallen out, it still awakened me to the fact that I am so much more than my hair. They say the eyes are the windows to the soul, and now when I look into my eyes I do see my soul, I see a woman who I love unconditionally.  I woke up in the middle of the night smiling about my hair – crazy, huh!  But then I thought of the book The Velveteen Rabbit – my gosh I was becoming REAL!  Did you ever read it?  It’s a favorite of mine I’ve read to my grandchildren over the past several years. Here are my favorite quotes from the book:

“Real isn’t how you are made, said the Skin Horse.  It’s a thing that happens to you.  When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.”

“Generally, by the time you are Real, most of your hair has been rubbed off, and your eyes drop out and you get loose in the joints and very shabby.  But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

“Once you are real you can’t become unreal again.  It lasts always.”

Stephen Levine writes “we don’t have to rid ourselves of anything to be whole.  All we have to do is bring mercy and awareness to what already is, to allow it to unfold.  Awareness heals.”

My awareness grows with each new experience through this stem cell transplant odyssey.  My “goal” was to be aware of everything I could and to find wholeness and healing through that process.  Since the cancer was diagnosed I have been on a mission to know myself at a very deep level – and I am slowly finding her.  Her hair may be all rubbed off, her joints a little rusty, her body a little limp, but she is a whole person nonetheless,  with a huge open heart who loves deeply and who is grateful for all she has received.

Thanks for sharing my journey.

With love,

Kathy

 

Day 15 – R & R

When I started the blog I thought it would be easy to do one every day, but I’ve now seen that is not possible.  It’s simply about my being too fatigued to do it.  But today I am ready to go so allow me to update you.

First I should say that the stem cell process has several phases.  The first is the mobilization, where the chemo and growth factor shot are given to move the stem cells from the bone marrow to the bloodstream.  A recent thought crossed my mind that growth factor could also apply to this whole process because for me I am growing in my self-knowledge and it’s kind of an adventure, crazy as that may sound.  Once the stem cells are ready to be taken, the next phase is called harvesting.  The third phase is called the preparative regimen which is killing of the cancer with hi-dose chemo.  The fourth phase is the re-infusion of the stem cells or the transplant, and the last phase is recovery.

On Thursday, February 26th. I finally had enough stem cells to harvest them.  Unfortunately decisions were made late and I didn’t get hooked up to the machine and going until 2:40 and they wanted me on for 6 hours.  The process didn’t affect me physically but I couldn’t be detached from the machine – and it caused me to be very thirsty, so guess what – bedpan!  Not fun but necessary.  The process made me cold so I was given warmed blankets, and the machine was noisy. The machine by the way is amazing.  I could see my stem cells (a pretty pink of course!) going into the bag and the plasma cells returning to me.  All this happens simultaneously through the two ports of my catheter.  It was not easy to read or to sleep so I just kind of rested, tried to relax, chatted now and then with the nurse who was wonderful, and just tried to be present to the whole experience.  Since I have been meditating for several years and in recent years really tried to practice mindfulness, I find myself very patient most of the time and this was one time where you’d want to be.  There is just a calmness I feel about me.  Now mind you, I might still feel nervous inside and I sure can’t control blips in blood pressure, etc, but the space around me just feels calm and I have an acceptance and a trust in what is happening.

Fortunately they decided to stop the machine after 5 hours instead of 6 so I came off the machine about 7:30 pm.  I got up too quick and was lightheaded but I so wanted to use a bathroom vs bedpan so off I went.  Perhaps it was that action or something else, but I got nauseated and had to vomit (I hate when that happens!).  I felt so exhausted that it took us a while to leave and I was more than willing to surrender to a wheelchair.  Got home and just wanted to sleep.  I ate a little something, got sick again, but eventually made it to bed and slept soundly until 5am.  I awoke Friday feeling amazingly fresh – not totally full of energy but way better than the night before.  We had to be there again at 7:30 as they though I might need a transfusion of platelets.  Well I didn’t need those but they didn’t think they had enough stem cells so I needed to go back on the machine.  Again it was acceptance that won out over disappointment and we proceeded to the machine room.  Perhaps it was being familiar with the procedure, but I felt more at ease with the whole thing.  I was able to even nap a bit.  Then after two hours a call came saying they had enough stem cells from Thursday’s harvest and we could stop YAHOO!!  It turns out they hadn’t gotten the results of that harvest at the time they sent me to go again, but they didn’t want me to  be there so late again, so they opted to send me early anticipating I would need another 6 hours. I think I ended up getting an infusion of magnesium before I could leave but the day was a bit shorter than the previous. Saturday was presumed to be a short day but now I know you don’t presume anything in the hospital.  Labs were drawn and they took forever! I ended up having to have magnesium, potassium and red blood cells.  We arrived at 1 and left at 6:30pm.  So much for a short day!!

We are now “off” for two days! Don’t have to go anywhere and my body gets a nice rest.  I should mention for anyone I told that I would be having chemo on Saturday and Sunday, that the schedule has been changed.  The chemo will be next Wednesday and Thursday and the transplant will be Friday.

I want to go back to Friday for a moment.  It was my brother’s 63rd birthday.  He’s been my main caregiver and I couldn’t ask for better.  He is especially caring about changing the dressing on my catheter and flushing the two ports.  This is daily with the flushing and now has moved to weekly with the dressing.  He is religious with this duty and is often reminding me when it is time to do it.  If anyone were to ask me what they would need through this or similar process I would say a caregiver like I have.  I believe it is important to my healing and I am grateful I have him in my life.

I would like to share a quote I picked up somewhere this week so here it is:  “Every event and every moment of every man’s life on earth plants something in his soul.” – Thomas Merton

Thanks again for tuning in……With love, Kathy

Day 10 – Another Sunny Day

Here’s an update on my getting through the mobilization.  Yesterday we started earlier trips to Hopkins for the shots because they are now doing labs to determine if the stem cells are getting to the volume needed to harvest them.  Today forward we will arrive at 7:30am.  They are now keeping me longer, doing labs and doing more of a check-up.  They went ahead and gave me the shot today because based on my blood counts they know I’m not ready yet – maybe Wednesday or Thursday for the harvesting.  I met with the nurse practitioner and in  her exam she noted an arrhythmia (which I felt then and had felt previously, but thought it was just fatigue-related).  She reviewed the January 29th EKG, which was fine, but she wanted to do another one – so we did.  All is fine and she wasn’t greatly concerned, but it made me realize that my body is going through a lot right now and even though I may feel “normal” things are not necessarily normal.  A few other things are a bit off so they may start giving me some supplements and of course will continue to monitor me each day.  My hematocrit is low which may necessitate a transfusion tomorrow.  Hematocrit is the volume of red blood cells in the blood.  I was told when we started all this  that I may have to have one or two transfusions during the whole stem cell transplant process so this is not a surprise – or a worry for that matter. But if I have the transfusion tomorrow it will take about 3 hours, and that will be after the labs, shot and mini-check-up, so we are preparing for being there several hours.

So the message for me today is REST.  Be quiet, take a nap (I got up at 5:30 this morning) and take some of that reflection time I mentioned in my last blog.  I also want to do a few of my physical exercises because I truly believe those actions allow my body to come into a neutral alignment and feel more fluid, allow my nerves to re-generate,and my metabolism to be boosted. And I feel better when I’m done!

As I wrap this up I’m looking out on the deck of my brother’s back yard and the sun is bright, the sky once again is brilliant blue, a breeze is blowing through the trees and………….it just reminds me that life is good.  Wishing you a beautiful day.!  With love, Kathy

 

 

 

 

 

 

Days 3 to 6 – A Day At A Time

 

 

Since Sunday, Day 2, I have visited Hopkins once a day to get my shot which is part of this mobilization phase of growing the stem cells that are now in my bloodstream.  Effects of the shot have been miniscule; slight soreness in the bone marrow areas of the sternum and hips, but otherwise no bone pain, which is great!  So the only thing that is different these days is fatigue which comes from the chemo I got the first day.  I notice it when I walk up the stairs and when I stand for longer than 5 minutes.  This is probably nothing like it will be when I get the two days of chemo right before the transplant – so no complaints here.  We now go for a daily visit at 2pm for the shot, but starting Sunday we will have to be there at 7:30am.  They will do labs and if the volume of stem cells is where they want it, I will be hooked up to a machine and they will harvest my stem cells; this takes up to 6 hours. The stem cells will then be frozen. If the volume is not there yet, I will just get the shot and go home.  This will happen daily until the volume is there. The hi-dose chemo is scheduled for February 28th and March 1st, and those dates won’t change, so if the harvesting comes earlier I will have the days following the harvest free until the 28th.  The transplant of my stem-cells (also called re-infusion) is scheduled for March 2nd.  That’s pretty much the way things will proceed, the effects on me yet to be known.  Certainly this whole process has its risks but people don’t normally die from a stem cell transplant.  This Hopkins team has me pretty confident that I am in good hands.

I’d like to shift now to how I am dealing with all this mentally and emotionally. My intention for this blog was not just to talk about the medical process; it was more about  sharing my inner experience of it all. But first a poem. I mentioned in an earlier post that I brought a lot of comforts with me, blanket, books, stuffed animals, angel picture, etc.  Additionally I brought some poetry books.  When I was a yoga teacher I used to read a quote or poem at the start of my class, often to set the theme of the class. Through this experience I developed a love of poetry so I have a few favorite books like Ten Poems to Change Your Life by Roger Housden, and Saved by a Poem, The Transformative Power of Words by Kim RosenOne particular writer I love is Danna Faulds, a yoga teacher in Massachusetts. I think I have 5 of her small books.  I brought one with me and it’s called Poems from the Heart of Yoga – Go In and In.  I was reading it Wednesday and this one spoke to me:

BIRTHRIGHT

 ” Despite illness of body and mind, in spite of blinding despair or habitual belief, who you are is whole. Let nothing keep you separate from the truth.  The soul, illuminated from within, longs to be known for what it is.  Undying, untouched by fire or storms of life, there is a place inside where stillness and abiding peace reside. You can ride the breath to go there.  Despite doubt or hopeless turns of mind, you are not broken.  Spirit surrounds, embraces, fills you from the inside out.  Release everything that isn’t your true nature.  What’s left, the fullness, light, and shadow, claim all that as your birthright.”

I took some reflective time on Wednesday to just BE. Up to that point since my move here I hadn’t taken any time to just be quiet and by myself and I felt a need to get away from phone and TV and the everyday distractions of life.  I lay down on my bed in a room streaming with bright sunlight and deep blue sky and just felt such a sense of contentment.  I thought of my two grandsons (ages 11 and 12) and the texts they had sent me wishing me well and my heart just filled up.  I thought of other encouraging cards, texts and phone conversations that left me feeling so loved and cared for.  I realized I didn’t miss my usual home routine of always going, whether it be store, exercise class, friend’s, movies etc. – I really didn’t miss any of it.  I could just be here and connect with the seemingly smallest things of life and be happy. I thought of all the various people I see at Hopkins as I come and go and could feel compassion for their suffering – I could relate to this human condition – and I could also feel compassion for myself.  Before I had moved here I had bought yet another book by Stephen Levine for my Kindle.  This one is called Healing into Life and Death. I had started reading it the night before and just like his other books, it really spoke to me.  He wrote a little about people who “battle” their disease by fighting themselves and their disease, perhaps feeling their disease is a failure somehow.  So there is a lack of tenderness and mercy for themselves as these holdings of the mind don’t allow them to discover the healings of the body. I think this is why those sayings people use, like “keep on fighting” or “fight the good fight” just don’t work for me.  What I am cultivating is heartfulness and peacefulness – I want to love myself through and beyond this experience thus opening to my complete wholeness, as the poem reminds us.  I do believe this is our birthright and we just have to delve deeply to know it and then embody it. I’ve also realized in the time I’ve been here that rest is essential for my body’s healing – and not rest where I lay on a sofa and watch TV, but rest that is quiet and peaceful and honors my body and what it is going through.  The same goes for my mind.  I need either that reflective time or meditation or even reading of someone like Levine, in order to allow the old churnings of the mind to calm so that my heart can be more revealed.  Levine says “..hindrances of the heart are hindrances to healing.  We need to let go of what blocks our path to the heart.”  This might be years-old stuff but it’s worth exploring in order to let it go.

Wow, guess I got carried away here but it does help me a lot to put words to how I feel inside, so thank you for allowing me to share with you.

Unless nothing significant develops with the shots, I will probably blog again when we move into the harvesting phase.  I will be very much subject to infection then but should be strong enough at that point to write.  Not sure that will be true after I get to the hi-dose chemo on the 28th – we will see!

With love and gratitude for your interest and caring,  Kathy

 

 

Days 1 and 2 – The Odyssey Begins….

Friday, February 13th  really should have been Day 1 as far as I’m concerned because it was an all-day deal getting my new port.  They call this a pheresis catheter, a small tube they insert into a large vein and “tunnel” it under the skin in the chest to a place where it exits the body.  The IV hooks into two external ports.  They  have to be cleaned and flushed daily so my brother has learned how to do this.  The procedure was done without a glitch but in recovery it started to bleed and it took two hours to get it to stop.  They would put lots of pressure on it, redress it and then put a bag of saline on it for pressure and we would wait (this was a bit uncomfortable).  Finally it stopped!  By that time it was 3pm and we still had to pick up some supplies elsewhere and get blood drawn again.  We left at 5 and traffic was awful so 90 minutes later we were finally home.

DAY 1

The official Day 1, Saturday the 14th – HAPPY VALENTINE’S DAY!  We started at 7:30 and some pre-meds were infused and then the chemo for two hours.  Much to my surprise I was exhausted immediately after the infusion.  We had another infusion of the drug that helps line the bladder to protect it from the chemo.  This goes in for 15 minutes every two-three hours.  We took a break and went to eat something but I held my brother’s arm because I felt kind of wobbly.  I only ate a half sandwich because I felt queasy and the last thing I want to do is throw up!  So interesting that I am more and more allowing myself to be vulnerable and be cared for.  For someone who has been so independent all her life this is a surrender that has to be made at this time in my life.  It’s a good learning for me.  And you know what? I could get used to this, at least the driving, cooking and catering to me when I don’t feel so hot. We had some prescriptions to fill and by the time we left it was again about 5pm and once again a long ride home.  I was just really tired so went to bed at 8:30 and woke up at ten in some pain, from my neck, jaw. teeth, face and head – again a surprise.  After an hour I took a pain pill and it took another hour before it started to subside. As an aside here, my medical staff had told me that I couldn’t use any of my essential oils -either externally, internally or diffused.  Bummer! But this is a trial I am in so I don’t want to rock the boat even though my belief is that these oils are totally pure AND they have been used for healing since ancient times!  But I thought I could just smell the peppermint to help with the pain since I have used it for headaches before, and yahoo, it worked (or maybe the pain pill kicked in) – whatever, I was able to sleep.

 

DAY 2 – I should explain this first phase of the process.  This is called Mobilization.  The chemo moves the stem cells  from the bone marrow into the blood stream.  Now I will get daily shots of a drug that is a growth factor -it grows the stem cells to a volume where they are ready to be “harvested” or taken out of me and frozen, until they are ready to go back in me.  So today is the first shot and fortunately we don’t have to be at Hopkins until 2pm every day.  Weather is frigid and windy with snow left over from last night.  I’m just somewhat tired this morning, not bad though.  We had a pretty easy visit.  They did some labs and then I got the shot and after gathering some supplies for dressing and flushing the catheter we headed home.  It’s normally about a 45 minute drive.  Had a quiet day with a nap included, a lovely soup for dinner cooked by my wonderful sister-in-law and later to bed.

I have to say once again that the staff at Hopkins are top notch.  My attending physician. who I met with last Thursday, explained the whole process again in a clear and straightforward way making sure that all our questions were answered. He gives me a great feeling of confidence that I am in good hands – it all helps!!

Since my original intention was to write every day and I see now that that depends on how I am feeling, you can go on this site and elect to be notified when I post something.  Once again, I so appreciate your love and prayers and just checking in on me – it’s comforting to feel the gift of human kindness and compassion.  With love, Kathy

Packing Up!

This is my last week home so I’m starting to think about all I want to bring with me to my brother’s house.  I’ve never been away from my home for more that 10-12 days so this is all new.  I hope my brother doesn’t freak out when he sees all that I am bringing!  I started by asking my 4 grandchildren to each give me a stuffed animal of theirs so I can have something of theirs with me – they obliged SO lovingly.  My daughter made me a beautiful afghan a few years ago when I had my hip replaced so I am bringing that – it is heavy and very warm and comforting.  I think of these items and others as “inner comfort” versus outer comfort.   A close friend recently gave me a very precious gift – it is a painting of a beautiful angel, very colorful and just stunning. The paining is by a local Virginia artist.  Just today I saw another of her angel pictures on Facebook with the caption, “Where your fears are, put angels there.”  So although I am not choosing to be fearful, I am bringing my beautiful angel with me to watch over me.

I have been an avid reader for years, reading both for pleasure/enjoyment as well as for information – you might call me a “seeker” of knowledge. After I got my diagnosis in 2011 I started reading many books, many of which contained Buddhist teachings, which I’ve been drawn to for years, and also books about dying.  I thought I was going to die soon so I felt I needed to get more comfortable and less fearful about it.  Reading these books gave me great comfort.  They soothed my soul.  If I would go longer than a week or so without reading something like these books, I would feel disconnected in some way – so I would pick up where I left off or just get another book.  Sometimes such books just came to my attention, without my looking for them.  One of them that I have been re-reading recently is Broken Open – How Difficult Times Can Help Us Grow by Elizabeth Lesser (who founded the Omega Institute).  This book speaks of not only Elizabeth’s journey but of many others’ as well.  She says “The transformational journey is a voyage with a hundred different names…All of these names describe the process of surrendering to a time of great difficulty, allowing the pain to break us open, and then being reborn – stronger, wiser, and kinder.”  Her name for the “quest” is the Phoenix Process named for the mythic bird with golden plumage whose story has been told throughout the ages.  The Egyptians called the bird the Phoenix and believed that every five hundred years he renewed his quest for his true self.  I could go on and on, but this book is so worth reading and contains so much wisdom.  Following are some of my other favorites which I can easily take to my brother’s because they are on my Kindle: The Journey Through Cancer: Healing and Transforming the Whole Person by Dr. Jeremy Geffen, MD;  A Year to Live: How to Live This Year as if it were your last by Stephen Levine, as well as Who Dies? An Investigation of Conscious Living and Conscious Dying by Stephen and Ondrea Levine. Stephen and his wife worked with the grieving and dying for years, both personally and in workshops.  These books are filled with wisdom and compassion and so much more; The Best Care Possible, A Physician’s Quest to Transform Care Through The End of Life by Ira Byock, MD; Dying Well, also by Dr. Byock; The End of Your Life Book Club by Will Schwalbe.  This book is a memoir of Will’s going through his mother’s terminal  cancer journey.  As he accompanied her to treatments and spent time with her they would share books they had read in the past as well as titles they agreed to read together.  This is not a really sad story because the mother-son bond is so beautiful and his mother was an amazingly accomplished woman and humanitarian.  The sharing of her wisdom and experience with her son is so special as well; When Things Fall Apart – Heart Advice for Difficult Times by Pema Chodron.  Pema is a Buddhist monk who has written many books using meditation as the foundation for her wisdom teachings.

Thursday I will head to my brother’s with all my “stuff”. We will have a meeting with the attending physician that afternoon and a nurse.  On Friday I will have a new catheter put in, and then on Saturday the Odyssey with really begin – stay tuned!

With love, Kathy

I’m Tested Out!

Sixteen days to go and so yesterday I spent two days at Hopkins getting a physical and having SO many tests/scans – yikes!  They want to be sure I am healthy enough for the transplant – but I figure I must be to endure those two days!  Thursday was a PET scan, which I’d never had before. I’d had several MRIs of my hip in the years before my hip replacement and they were awful, noisy and just not fun, but the PET scan was comfortable and I even got music – a nice classical playlist!  When I initially was diagnosed with multiple myeloma I had x-rays of my whole body to determine if I had any bone lesions and the conclusion was that I had none.  Probably 1-2 years later I had them again, and again they showed no signs.  Recently some guidelines have changed regarding x-rays versus MRI to detect the lesions and I believe the recommended way to test now is via MRI.  But I am happy to say that the PET scan showed absolutely NO sign of any lesions!  You know, when you have this kind of cancer that is in the bone marrow and can seriously affect the bones, you can’t help but wonder when you feel a tweak or pain here and there if it’s really a bone lesion – so this was truly blessed news.

Yesterday morning started with a two-hour training class and tour for patients and caregivers.  There were three of us patients, me being the only one getting her own stem cells, the other two getting donor cells.  Interesting but somewhat overwhelming, hearing of all the potential side effects, importance of protection from infection, importance of staying strong despite a lot of fatigue by moving and exercising as much as possible.  I can say that I immediately thought that I would definitely be moving, walking, whatever I could do, but in reality it may be easier said that done if I’m dealing with huge fatigue. I will have to get my brother to kick me in the butt if I haven’t at least done something in any given day!   I will sure do the best I can because I know it will help.  One thing the nurse said that really made me stop in my tracks was that essentially I am getting a new immune system and as such will have to get all my childhood vaccines redone – wow – that was scary to hear, but at the same kind very cool, to think that is possible at all!  There is no question in my mind that Hopkins has all this down to a science – the nurse was detailed, thorough and quite clear on many things – this is the way it was done and they are prepared for anything that might happen – they know their stuff and that is reassuring.  We had a tour of the in-patient, out-patient floor (IPOP) and were shown the treatment rooms, and surrounding areas.  At any time they can have 50 or more people in there.  I have to admit that as the training was completing I couldn’t help but go back to that fear place in me about all the drugs that would be going into my body and the effect they would have on my good cells, organs etc.  But then I was reminded of two things: one, that many people go through this and other intense treatments and survive and even eventually thrive, despite the trauma to the body; and second, that my body is self-healing and cells do regenerate, and what I think and how I react makes a big difference to my own wellness and healing – so onward I go!

The rest of the day was exhausting, lots of blood drawn, medical history and physical, CT scan of the sinus area to look for any infection, EKG, echocardiogram, and lastly, pulmonary testing to test lung capacity. As I drove the hour-ride home in sleet and rain I reflected on all the nurses and technicians who treated me.  They were all very kind and very skilled.  In the lab where I had blood drawn there was a sign on his bulletin board headlined EMPATHY, what it was and how it needed to be applied with every patient they came in contact with.  I experienced that and I so appreciated it as well.  I slept like a log that night.

One more piece of good news yesterday.  My stem cell transplant is part of a trial that is directed by my myeloma specialist.  It includes only a standard autologous stem cell transplant (one’s own stem cells versus a donor).  The research of the trial is being done to find out if altering the immune system by giving Tadalafil, and activated marrow-infiltrating lymphocytes (aMILs) can improve outcomes for multiple myeloma patients who receive the standard autologous stem cell transplant. Interestingly Tadalafil is Cialis and is approved by the FDA for the treatment of erectile dysfunction and pulmonary hypertension.  I don’t know why this drug was selected for this trial.  It is not approved for use in multiple myeloma, but the FDA is allowing the use of it in this research study. The  aMILs are blood and bone marrow cells that are stimulated to react to certain proteins.  These aMILs can then be grown and expanded in the laboratory.  The hope is that the aMILs are more effective to target and kill cancer cells. The trial has two arms or groups and one group will get the aMILs and the other will not.  My specialist had said at one time that if this trial was successful it could be a breakthrough for multiple myeloma – I’d love to be a part of a breakthrough and, as it turns out, I have been randomly selected to get the aMILs so I am excited about that!  In early January I had a bone marrow collection and so that bone marrow has been taken to the lab to create the aMILs that will be infused into me after the transplant.

As I move down this road, I have this strange mixed feeling of excitement on one hand to get started and on the other the realization of what I am about to put myself through.  It will be interesting to see how those feelings change as I move closer to the start date – stay tuned!  And thank you for caring to read this!

Kathy

 

 

Getting Ready…..

Okay here I go with my first blog!!  Twenty days until the day my stem cell transplant process begins.  It happens to be February 14th, Valentine’s Day – couldn’t have a better day to start!  I want to kick this off  with a quote:

“The last of the human freedoms is to choose one’s attitude in any given set of circumstances”…Viktor Frankl.

There is a lot to fear with a stem cell transplant but I choose not to fear – I choose not to resist the experience but to be with all I do experience.  That is part of the reason I wanted to write this blog so I can be aware of my experiences and write about my feelings as I go through the process.   I think that each person’s body reacts to the drugs in their own unique way, dependent on many factors that I don’t know that anyone totally understands. Certainly there are physical, mental, emotional and definitely spiritual factors.  The point is, why fear what might happen.  Sure, I will experience side effects, but who can really say how much, how little or what.

Another thing I want to share is that I don’t believe that having cancer is a war I have to fight –  so don’t tell me to ‘keep on fighting’ or ‘fight the good fight’ – that’s not something I want to hear or that will make me feel good.  I don’t choose to wage war with it and never have, from day one.  I am perhaps, like many other people who have received a cancer diagnosis, or any diagnosis for that matter – once it sunk in and I started to live with it, it became a blessing – meaning that without the diagnosis I may not have learned what I’ve learned about myself in the past 3+ years, and I continue to grow and learn from this odyssey!   I feel like I am a better person now than I was then!  And more importantly I choose to be at peace with it all, as best I can.

So here is what is going one with me right now, twenty days out.  My transplant is at Johns Hopkins in Baltimore, MD and it is part of a trial, directed by my myeloma specialist.  So this week I go to Hopkins to have a thorough physical check-up, scans etc.  Since I will be staying with my brother and his wife, because they live closer to Hopkins than I do, they will be my caregivers (bless their hearts!) so we will have a training class this week also to learn I- don’t- know- what, but I’m sure it will be a lot. In the meantime, I am shopping for a wig.  Yes, right now I can’t see myself walking around bald or wearing a little scarf over my head.  I’m not exactly sure when I will lose my hair.  There is chemo the first day, but the big dose comes maybe two weeks after and then they say it takes about 2-3 weeks for the hair to start coming out – so perhaps I won’t even need the wig until I am back home – but I like to plan ahead so it is on my to-do list prior to the 14th.

An important fact to know about my condition is that I haven’t had any bone damage from this disease.  To look at me you would not know I have a serious disease.  My “discomforts” have been totally related to the drugs I’ve taken and generally speaking that has not been bad.  I have a good quality of life.  When I was first diagnosed I was dealing with a hip problem, which worsened about a year later.  We were afraid it was cancer-related but thankfully it was not.  So in January 2013 I had a hip replacement and that made a world of difference to me physically.  I have always been active and strong and so that new hip gave me such a boost, especially after being fatigued for a while through my initial treatment. I now work with someone who does what she calls neuro-biomechanical therapy and with regular special exercises I have gained strength and stamina as my nerves have regenerated and atrophied muscles have engaged again.  I think physical well-being is key to healing and I am so grateful I can do these things.

I think that’s it for today.  I probably won’t write every day until the process begins but I’d love to hear from you if you’d care to comment, share or whatever.  Peace to you…………Kathy