March 2011 – I’m Still Here

My goodness it’s been a while since I’ve updated in this blog. Sometimes I think I should delete it, as I’m not faithful to it. I’m sort of a nut, as I have at least three different blogs! I created each blog for a different purpose as well as audience. That’s plain stupid.

This blog was more for sharing my experience with others and hopefully helping others. My journey took so many strange turns. I guess if I use President Obama’s [irritating] analogy about driving a car, I’d say I ended up in a ditch myself! Afterall, I am a Republican. LOL [He’s such a divisive President, but this blog isn’t for my political leanings, so I’ll stop right there!]

What prompted me to write tonight is I received a very nice comment from a November 2007 entry! Wow. That was a long time ago. That’s back when I still had hope of getting back to normal, or at least a whole different kind of “normal” than what my “new normal” ended up being. That term ‘new normal’ sure turns out to sound obnoxious to me now!

For a refresher in case anyone has returned to this blog and forgotten my story or if you’re “new”, I was diagnosed with Multiple Myeloma IGG in October 2005. I was 50 years old. From the day I first got sick, October 4, 2005, I was never well enough to return to work! I had a stem cell transplant (April 2006) which did not provide for any remission whatsoever for me. I was on Revlimid/Dexamthesone from 8/06 – 10/07 which was 16 cycles I believe. That regimen gave me a very good partial remission.

But my problem is spinal cord damage (atrophy) at my T8. In December 2005 it was discovered I had a tumor at my T8, so I had radiation and kyphoplasty. Between the damage from the MM/tumor, then the radiation, and later the kyphoplasty, my spinal cord was damaged at that little spot.

When I read my posts back during October and November 2007 and later, it is unsettling a little for me to read how I describe my sensations. No wonder I always felt different than everyone else. I was different! I was thinking those sensations were side effects from Revlimid, the steroids, or some other medication. It never crossed my mind the possibility of spinal cord atrophy.

You would be surprised the progression of symptoms when your spinal cord is messed up and giving wrong messages to your brain. I am nearly crippled with the weakness and pain in my feet and legs. My legs have what they call “tone” which is the same as rigidity or spasticity. They don’t bend easily or at all. I think people with cerebral palsy has similar symptoms. I used to take Baclofen (pill) for the spasticity, but it wasn’t doing the job and practically knocked me out. I now have a Baclofen pump (Intrathecal pump) that holds medicine and is connected directly into my spinal cord. That sounds totally gross doesn’t it? To think that I was one who was scared of needles and now I walk around with this pump inside my stomach that has a tube that runs around my side (underneath the skin) and directly into my spinal column is crazy gross, huh? LOL When I first heard of the possibility of me getting one of these pumps, I freaked out. I said “no way”. I meant it, too. It’s funny what you do when you have to do it. If something is going to help you, you somehow are able to handle it. It’s really nothing now that I’ve adjusted to it. I’m glad it is ‘under’ the skin. I would say it has improved my quality of life 100%. It’s not a cure, but it certainly is a major improvement.

My MM is doing fine. My markers fluctuate, go up and down a little, but they’re within the normal range and don’t require treatment so far. I now see my oncologist every six months. This Wednesday I have Lab work done and will follow-up with the doctor the following week for my six month check-up.

I have to catheter to urinate, which is a pain in the rear really. Just think what it’s like when I go out in public. I have to be sure to carry catheters & all that goes along with being able to catheter myself when I am in a public bathroom. I hate that. I miss the days when going to the bathroom was less complicated. Bowel movements are also an ordeal. I guess whatever damage is done in my spine affects that function to some degree, too. You can google “Neurogenic Bowel” if I remember correctly. There’s a pamphlet in *.pdf format you can download and it gives you ideas of how to cope with this problem. There’s two different kinds of bowel trouble, if I recall, but I couldn’t tell you the term for the other one. A really awesome nurse from KU University who worked in the rehabilitation area sent me a copy of the pamphlet which gave instructions for people with Spinal Cord Injuries (SCI) on how to manage bowel functions. Although it is dated material, it is very helpful. I also found it on the internet.

It’s hard to find support related to SCI’s. No one talks about it and many doctors, nurses, and assistants don’t know enough about it to be of that much help. I mean, WHO talks about what you have to do to go to the bathroom if you’re paralyzed or having those kinds of issues? I haven’t googled that stuff in a while….maybe there’s info out there now.

I think part of my problem is acceptance. I think I’ve accepted this stupid new normal of having issues from spinal cord damage, but in fact I’m still being a bit stubborn about it. But, maybe that’s a good thing. Determination. You need to have a lot of determination to survive chronic illnesses let alone symptoms like paralysis or close to it.

So – I’m basically the same as I was last time I wrote in here. I know there are changes, but nothing major. I live by myself in a retirement-like place. I couldn’t live where there’s steps or had a long way to walk from my car to my home. I am still able to drive, although I don’t go out a lot. My sister often takes me to my doctor appointments, but then I also drive myself to them.

I prefer to stay home for the most part. I’m usually very tired and I just feel more comfortable in my own familiar surroundings with everything I need right here. I do try to force myself to get out amongst people, though. That is very important. I used to go to two different bible studies during the week. Well, I tried–I missed them sometimes, too. I often am too tired to go or I don’t push myself hard enough. Recently, one group rescheduled their study so that it is at the same time as my regular study. so I’m down to only one study group a week. I volunteer to help count my church’s Sunday offerings which is only about once a month. I try to be social and am blessed I have some true friends.

I do experience significant pain and discomfort. It’s really indescribeable. There isn’t much I can do about the pain and discomfort I have. There’s not a medication strong enough to numb the pain/discomfort. In order to numb this pain, I’d have to be put completely out! My feet not only burn 100% of the time, but I have sharp pains and a stretching and pulling sensation in my toes or under my feet. I have similar sensations in my private parts. It’s maddening. But, there is nothing you can do about it; you have to focus on other things in order to cope.

It’s easy to turn within yourself when you get immobile and are in pain, but that is the worse thing you can do. Funny, I KNOW much of what I should and need to do; I can write it out here, but I can’t always DO IT in reality.

I was just thinking about that today. On Sundays my son and daughter-in-law along with their 3 year old son visit me. They come to church with me, we eat lunch together, and then they visit in the afternoon. Today after they left I considered how little interaction I spent with my grandson today. I didn’t feel well and I think I was focusing on that rather than my grandson. I made note to myself that in the future, I’m going to try to focus more on my grandson (rather than my pain) and see if I can conquer this battle. I always hate it when after my grandson leaves, I look back and realize what I missed out on worrying about my discomfort.

Anyway, it’s really “same ole same ole” here. My other son and daughter-in-law are expecting their second son in June. Their first son will turn two March 15th. Oh my gosh! That’s in just a few days! I am hoping to spend some time with them in June, God-willing. It will have to be a God-thing, as I don’t think I can handle the travel on the airlines by myself. We shall see.

This was more of a refresher/catch-up entry. I hope to do better. (I think I’ve said that before…)

It’s not all about numbers for me

Although I often fixate on numbers, trends, statistics; a big part of who I am is my faith and belief in the unseen. This is probably why I am filled with so much hope that through all this treatment and prayer I live with confidence that I will receive a positive outcome and so will the others on this journey with Multiple Myeloma.
A couple of months ago I mustered up some strength to share my life journey at the Ann Arbor Vineyard Church (FF to 22min mark). While preparing for the talk it became very obvious that the last 6 years of my life (Cassie’s too) has been filled with a lot of loss, pain and what I would sum up as darkness.
But it hasn’t felt like extreme darkness, although a quick recount of all the unfortunate and outright horrible experiences would deem otherwise. Today I stumbled across a verse that made me realize why I haven’t been consumed by the lurking and frequently consuming darkness in my life.
You are my lamp, O LORD; the LORD turns my darkness into light. -2Samuel 22:29
In my struggle to understand life, marriage, work, kids and now cancer; God has taken the darkness that has often times surrounded me and transformed it into a light that has shined onto my path to bring direction, clarity and ultimately comfort in knowing that He is there to shepherd me so that I don’t have to go at this life alone. The greatest part…is that regardless of what happens…I know how the story ends.
Dominate Life.
-Phil


Oh Happy Day!

Well, it’s probably time for an update on Mama Bear and LIFE! How sweet it is :) Before I begin, i’ll apologize in advance if my grammar and/or sanity get lost in translation. The repairmen came to fix a bunch of things in the apartment, so you know what THAT means! Yep, i’ve been inhaling the wonderful fragrances of GLUE, DRYWALL, and PAINT for the last 5-6 hours. joy. 
Anyway…
Mama Bear had her check up with the good doctor on Tuesday to see if we would need to go through with another transplant. Fuck. The days leading up to the appointment were filled with absolute DREAD as I had been almost 100% sure that she would have to go in (which would have been the following Thursday aka TWO.DAYS.LATER). Over the break, I had the chance to go back to the Tom Baker Cancer Centre for one of her chemo sessions and was able to look over her blood work. Her CBCs were pretty stable, but her Total Protein, which is a mix of both good protein and BAD protein (aka Myeloma protein), had gone up a little. Based on our history, rises in the total protein have never been because of the good protein going up. Aside from that, her Beta-2-Microglobulin levels had also gone up a little as well… Recent discussions on the ListServ on this matter have informed me that it is a new prognostic measure for myeloma patients. In other words, you do not want this number going up. Of course, I didn’t tell her any of this because I didn’t want her to worry. But all these things combined led me to believe that a transplant would definitely happen. Needless to say, it wouldn’t have been a very good start to the new year. But, to my surprise, my mom answered the phone with sunshine in her voice, saying that her m-spike (myeloma protein) had actually gone DOWN from 13 to 11. Granted, it’s not a lot, but any decrease is a step in the right direction, yes? That was a SHOCK. Our doctor had also said that her FreeLite Chain things (i’m still unsure about what these are exactly, so i’ll have to research it a bit more) went down a lot. Apparently, it is a better indicator of where you’re at than the m-spike? This, i’m not too convinced. I’m a little skeptical. Why had we never looked at these numbers in all the appointments before???? So, it’s still something that requires a little more investigation on my part. But I do trust our doctor. He’s a very good man, I just don’t understand what’s really happening and need to gain a little more information/control on my part. Anyway, he recommended, instead of a transplant, adding on another drug, Revlimid, to her current regimen. That brings the total to a chemo cocktail of 4 different drugs: Dexamethasone (Dex), Revlimid, Bortezomib (Velcade), and Cyclophosphamide (Cytoxan). Technically, Dex is a steroid, but whatever. A drug is a drug. I’m not the most elated with adding another drug to her regimen, as the body can only handle so much. And with the recent findings that Revlimid can cause secondary cancers, well… yeah. But I suppose it’s better than the alternative, yes? I’m pretty sure another transplant is due down the road, but right now is probably one of the worst times to do one. Flus, slippery ice, cold weather, etc. do NOT make for an easy recovery. Regardless though, I’m extremely grateful that that day was filled with good news, more so that my mom didn’t have to receive any bad news. I could tell BOTH my parents were relieved. It’s funny though. The night before, I prayed, like any other night. But instead I decided to ask just that the appointment would go well. Just one thing, not a whole list of things like my overall family’s health, happiness, etc. One precise, specific thing. And it’s like God, or someone, heard my prayers. So since then i’ve just been sending up prayers of gratitude and thanks. Aside from the obvious, I have nothing to ask for right now and plenty to be thankful for. I can tell we’re all growing a little weary of this, but anytime you receive good news, it   fuels the fires that push you forward. A dear friend of ours, whom we met during this whole ordeal, recently came thisclose to dying. From what I was told, his numbers came back so high they asked the technicians if there was a mistake, perhaps in a decimal placement or something. But nope, they were the real numbers. This was all in the post-transplant recovery in the hospital, so you can imagine just how discouraging that would have been. This is hard for me to write because it could happen to anyone affected with cancer, but it was suggested that they call family members to say their good-byes. That…is just heartbreaking. But. One morning, the numbers came back and…THEYWEREZERO!!! Miracles happen, my friends. Keep the faith and never give up. 


So that pretty much brings you up to speed on where the family is at. In other news, I’m just about to start the Phase II of my fundraiser and awareness campaign “Monsters Against Myeloma”. If you’ve been following the blog, you’ll probably know what it is :) Someone had heard about our cause and very graciously donated their own tickets to Lady Gaga’s concert in Salt Lake City in March. So i’m supersupersuper excited (and supersupersuper busy) to get this thing up and running ASAP, hopefully by the start/middle of next week! I plan on contacting the media within a couple days to get the word out. So if any of you, my beloved readers, know anyone in the Salt Lake City area wanting to go to a Lady Gaga concert (c’monnn, who WOULDN’T?!), please let them know about our event! I realize fundraising can seem a bit daunting sometimes, but our last winner from the summer won two tickets with $250 dollars raised (most of our donations have come from those just wanting to support the cause). It’s a lot of money, but also very do-able! So we’ve got that in the works. I also am in the midst of applying for any sort of volunteer position at the Edmonton Cross Cancer Institute, just to show my gratitude. Over the course of my mom’s treatment, the volunteers and nurses really were the unsung heroes. I cannot even begin to tell you how much these men and women do, how much love and care pours out of them. While doctors are amazing, these people are truly the faces of care and treatment and are severely underrated in our society. So I really want to try and give back to the community to show my gratitude and help others who are going through what I went through just over a year ago. If any of you, my readers, have not been directly affected by cancer, I would highly recommend volunteering at a local cancer center. Yes, it will be very uncomfortable at first. I remember the first day we went in for treatment. Dear lord, that was horrible and very unsettling. But you get used to it, as with all things, and have the opportunity (because it really is an opportunity) to meet the most amazing and courageous people, and have your lives changed. Forever. 
Either than that, school is keeping me on the hustle as usual, studying lecture notes (yeah, right), looking for internships, and getting involved. BUSYBUSYBUSY! 


Hope all is well with you, my readers.
Sending good vibes into the universe and you.

L

Wish Bone

So tomorrow is the big day. Mama and Papa bear are going into the clinic to get a bone marrow biopsy done, which will basically tell us whether or not the stem cell transplant was effective. For those of you who aren’t aware, this procedure is the best way of getting the most accurate image of “where you’re at” because it gets a direct sample of the myeloma cells residing within the bone. Needless to say, i’m pretty sure I can speak on behalf of everyone when I say that we’re a little nervous… Since my mom was discharged, we’ve been living in this magical land that goes by the name of ignorance. Ok well, maybe not ignorance, as we are not choosing to ignore anything here. But after a stem cell transplant has occurred, there is usually a period afterwards where you go medication-free and just focus on recovering, on healing. It’s been absolutely amazing, almost as if nothing ever happened. As if our lives had returned back to normal, whatever that means anymore. But subtle hints, like my mother’s lack of hair and an ever-present cloud hovering above my head (although small), show that reality exists, and gives this dreamscape away. Ignorance truly is bliss. The truth is terrifying. If I could stay in this moment of not knowing forever, I would be satisfied. But alas, the world does not work that way, and we all must come to face reality sooner or later. Whether that is a good or bad thing remains yet unseen. Sometimes, the truth is a hard thing to face. Yet we all manage to derive strength from within in order to do so. I will be honest, since the transplant, not a day has gone by where I do not think about the mortality of my mother. I have gotten better over time at ignoring or shunning these thoughts to the recesses of my mind, but that does not mean it isn’t easy, that it doesn’t cause me great pain. I don’t think my brother, or even my father sometimes, realize to the full extent of what we have gone through and what may lay ahead. A blessing indeed, to not be burdened with such thoughts. Or maybe they do, and they just don’t show it. I try my best not to. But there are times where I feel the lessons we’ve learned, such precious lessons, have already been forgotten among them. I hope not, because those are lessons that no one should have to re-learn. Since the transplant, I have literally prayed every.single.day for the same thing, hoping that they be heard by someone above. That this transplant, and all the treatments beforehand, be all that my mother needs in order to obtain a strong, sturdy, everlasting remission until a cure is found for her, that will work for her. Every day I have prayed for this, and the general well-being of those close to me. Every day. I have never prayed so much for anything in my entire life. And so now, here we are already, turning the page of a new chapter that will hopefully be filled with good health, hope, and happiness. Tomorrow is the day, and I am praying with everything i’ve got. Please pray for us.

Coping With Surviving

I’ve got to get back into “this” blog. When I so naively started it, I said “this blog” was for sharing my experience with Multiple Myeloma (MM). This blog wasn’t to be about opinions or feelings, but rather just medical news.

Well, that’s still what I want this to be, but pardon me if I throw in an opinion here and there. It goes with the territory sometimes.

My last check-up with my oncologist was great. My numbers remain at the simmering point. They fluctuate. Although my doctor ordered the M-spike test, the lab didn’t do it. However, the other markers were enough to report that I’m running under the radar so far. I need to update the pages with those numbers…..

My Intrathecal Pump is working fine. I’ve had it refilled twice. I believe I now have six months between refills. I had the dosage increased with the refill, but I’m still taking such a minimal amount. I did have a strange experience the day after. At first I thought I’d made a mistake in upping the dosage because the second day I could barely lift my legs to walk. I’d sat several hours on a cushion at the kitchen table, but that shouldn’t have caused my inability to even walk. I stuck it out and within a few days I got nearly back to normal. That was over a month ago and now I am back to normal. I have no idea what it was. I do find that my legs are sometimes still stiff and rigid. They might be increasing in their rigidity, I’m not sure. I wish things would just plateau…but it seems they’re a moving target. The key, I find, is to learn how to go along with the inconsistency. It does’t pay to fight it. I’m better off if I let up a bit, allow for the fluctuations, and learn when to contact a doctor or when to let it go. My primary doctor asked me on a scale of 1 to 10, how has having the Baclofen Pump changed/improved my life. My response was a ’10′. Definitely. Before I was so drugged out on the 80mg of oral Baclofen and my legs were extremely rigid. I was very sleepy and could not adjust. With the pump, the liquid medicine is Lioresal. I can’t remember now what my dosage is, but it’s something like 110mcg….not even 1mg. (If I understand my measurements…1mg = 1000mcg.) Isn’t that amazing?

My biggest problem with coping with cancer is the after affects, and in my case it’s the spinal cord damage and what goes along with it. I’ve explained all that in previous entries.

I’ve always whistled to a different tune. So when I was diagnosed with a “rare cancer” such as MM, it wasn’t that surprising that I’d have to get something rare. But I didn’t stop there. Somehow I’ve ended up with a spinal cord that’s atrophied at the T8, where I’d had a lesion (tumor). I’ve not met or heard of another MM patient having this same experience. I’ve even asked my doctor(s) – nada.

It gets to me sometimes that I haven’t met another person with MM who has had this same experience. I’m expecting too much, I know.

Although I haven’t conquered my bowel function to an acceptable degree, I’m doing OK. I’m just not predictable, comfortable, or regular. Some of it is because I don’t have a routine down as far as sleep or eating. I’m sure it would help if I was more routine. (Make note to myself to work on that.)

In some ways I feel like my feet hurt a little more or that I’m even less steady in my getting around. At home I will move around without a cane sometimes, but only for short distances and where I can touch the wall for balance. I use a cane or walker.

But with all that, at the dentist appointment yesterday, my hygenist (sp) she said I both looked better and got around better. Hey! I’ll take that.

I made it a point to “smile” yesterday. When I walked in the dentist office and the receptionist said ‘hi’ and remembered me, I was approachable. Instead of just responding I was “fine” and sitting down, I interacted with her (Denise). I had to ask her to remind me of her name and proceded to talk to her, ask her questions about her life. She’s got a son with health issues. I felt more like the “old me” than I have in a long, long time and it felt good.

It’s been so long ago since that day when I sat indian-style in my hospital bed with the doctor telling me he thought I might have myeloma. I didn’t even know what myeloma was, much less that it was a cancer. That was way back in October 2005.

Trust

by Thomas R. Smith 

It’s like so many other things in life
to which you must say no or yes.
So you take your car to the new mechanic.
Sometimes the best thing to do is trust.

The package left with the disreputable-looking
clerk, the check gulped by the night deposit,
the envelope passed by dozens of strangers—
all show up at their intended destinations.

The theft that could have happened doesn’t.
Wind finally gets where it was going
through the snowy trees, and the river, even
when frozen, arrives at the right place.

And sometimes you sense how faithfully your life
is delivered, even though you can’t read the address.

“Trust” by Thomas R. Smith, from Waking Before Dawn. © Red Dragonfly Press, 2007. 
________________________________________

More about Thomas R. Smith. What does health care reform have to do with poetry? A timely essay by Mr. Smith: A Guide to the Health Care Labrynth.