Lisa Ray, a stunning actress that was diagnosed with MM, fights for stem cell awareness and research! For more information on Stem Cell City, go HERE
Subaru advertising is making me nuts. They spend a lot of time trying to associate their cars with warm and loving relationships full of romance and adventure. But it also appears to portray relationships as being like the cars as well; indicating that everything wears out. So here’s one ad showing a man reminiscing his time with a previous girl friend and then shows that while the woman changed, he kept the car. I don’t know if anyone else sees this in those commercials or if it’s just me, but it drives me a little wacky.
With now 60% of all marriages resulting in divorce, perhps the governing bodies in Mexico City have it right by offering licenses for marital contracts of two year terms. At the end of the two years, the couple can go their own way or choose to re-up. I have to wonder why someone would enter into such a relationship; I’m thinking why not just live together. That way, whenever the event comes around that you thought would cause you to be divorced in two years, you can go your separate ways. Of course, it turns the idea of relationsips into the same sort of commodity as a used car ownership.
I always figured that marriage was supposed to be a committment in the long term. To me, there are a few reasons for divorce; infidelity topping the list. I never got the concept of a partner shooting their spouse’s lover, I always figured you should kill the spouse, what with them doing the betraying and all. But apparently these days a lot of reasons suffice to break the bond respresented by the circular band on the third finger of the left hand. Everything from political disagreement to leaving public hairs on the bath soap seems to create solid reasoning for denouement.
I figure that marriage becomes valueless when there is no sense of trust and support for either or both of the parties. So it doesn’t take some particular bad deed to cause a breakup. People can and do grow apart when the mix wasn’t right from the get go, or as a result of character change over time. When one or both people become furniture as far as the other is concerned, then there is no point in the union.
Of course, marriage mens different things to different people. One can’t easily, in my opinion, compare the marriage of high school sweethearts with a marriage arranged by family before the bride or groom was born. Or compared with mail order marriages, marriages of convenience, or shotgun weddings. There are indeed a lot of different brands for this particular product. So maybe I just don’t know enough about the subject to have a valid opinion about it. Then too, I’m divorced myself. But I did have a negative reaction to Subaru’s characterization of wedded relationships being akin to vehicle ownership. That reaction came from somewhere so I must have an opinion anyway.
Then again, I guess it’s a little foolish to have a reaction to advertising, it’s all hogwash anyway.
As both a software developer and a musician, I understand the concept of intellectual property. While the Internet has done a lot to promote people and their creations, it has also been a devastation to others. I’m not talking about corporate executives snarling that their gravy train has finally left the station. Screw ‘em. They could embrace the internet, drop the high fees and go with volume sales like the other people who successfully converted their businesses to the online market. But I am talking about how the Internet can do what amounts to spiritual damage.
A guy I have never met but is still familiar to me has created a software product that has reasonable utility. It is a method of controlling robots, the primary robot it is aimed at now obsolete and no longer even manufactured. You can still get them on eBay, as one person tires of its somewhat limited scope of utility and moves on to other playthings. Many of us watched as version 1 of this software gave way to version 2 and then 3 and so on, and then stood in line for a long, long time, waiting for version 5. Somewhere along the way, the project stopped being a free gift to those with shared enthusiasm and suddenly became a for profit enterprise. The author wanted to get paid for the after work hours he spent, and he began asking all of his supporters to pay him for his time, claiming that for some reason, his hobby had to become profitable.
As I said at the outset, I fully understand someone wanting to profit from their efforts. So I supported this guy in his endeavors to collect monies to pay him for his time. I didn’t support him with money, I supported him by pointing his project out to a lot of people, and posting about him and his work on a number of the forums I participate in. I know for a fact that I am responsible for five or six of his contributors; they didn’t even know he or his project existed. As he reported his successful attempts at funding himself though, I watched his loyalty swing towards the people whose names were on the contributors list. Mine is not there, in spite of my supporting efforts. But it wasn’t me I thought of as I read his last missive, which explained that the contributors would get to advise him on further developments, get a more complete version of his product software, and generally get treated better than those whose names did not appear on the money list. As much as I know my support helped him, I also know that others like me did the same. One in particular went so far as to say that he planned to purchase a copy of the so-called “Pro” version when it came out, to support the project. But he had to wait to get money from a distant government dole for his schooling and couldn’t cough up at the moment. But like me, he was out there telling people about the project and helping to generate interest and perhaps donations towards the effort.
I can’t help but see an unfairness in this. Perhaps without the push that this other fella and I did, the project might not have reached its fully funded goals. Yet, in the author’s happily worded thanks for all the help and sent to all of those on his mailing list, I couldn’t help but notice the conspicuous absence of thanks to those who probably did as much or more than he did to promote his project. The funny part of this is, and I mean that it does strike me as humorous, that I no longer have a personal interest in his project. I have moved on from the tethered world of production robotics into the realms of those I create on my own. What’s more, my computer is starting to get jealous of my various Android devices because I use them for just about everything these days. I am using my tablet right now, in fact. Along with the wireless keyboard I bought for it because I really dislike virtual keyboards and am too clumsy for thumboarding. So in truth, his software won’t run on the systems I use each day, much like the robot, they are rapidly becoming anachronisms in the forward flight of Moore’s Law on technological redoubling. As to the robot in question, I have boxed it up and am getting ready to either sell it on eBay or perhaps give it to my grandson, who is showing a welcome affinity for robots.
I guess my point here is that what happens with the software and its abilities is no longer of much importance to me. But I have to admit that I feel a tinge of irritation at the way that money has become such a forefront issue to the author, and how he has taken for granted the efforts to support him that don’t appear boldly on his bottom line. Of course, there is no real way for the guy to know who it is who has helped him. He could surf the Internet forever and perhaps never locate a post or a comment that mentions him and his project, Google notwithstanding. I’m pretty sure that the people who supported him are not the kind to write to him and say “what about me?” in terms of the perks he is bestowing like a politician on his contributors. Like the politician, he is kow-towing to the money rather than his constituents. So now, no matter what he does, he is stuck in the proverbial rock and a hard place. He can either forego further profits and continue to hand the full package out for free, or he can step on the people who quietly helped him. Probably completely unawares, he has placed himself in the category of “them” –as opposed to “us.” He is a profiteer now whether he likes it or not.
While he points out that his project can provide ersatz assistance to those of us with profound handicaps, he has to remember that his product depends on a product that is already obsolete. It will take effort for people to go out and find one of the robots necessary to gain the positive effects for the handicapped that he offers. So I would tend to classify his association with handicapped users as the tiniest fraction of his potential market. I also suspect that the other robots his software supports, that will not perform the aspects he touts for the disabled, will probably see a lot more use than what he’s promoting. I intend to send him a link to this article, not out of anger or cruelty, but to point out what he has done. I think he’s a pretty good guy and didn’t realize the collateral damage created by his rush to reach a funding goal. And, if I happen to decide in my grandson’s favor when it comes to the disposition of the aforementioned robot, I will buy a copy of his Pro software to go along with it, because it will teach the boy something about a few different disciplines in technology.
If push came to shove, I suppose that I would admit that my knowledge of robotics has been improved through the use of his software in the past. And I am one who tries to repay kindness with kindness. As such, I have been very careful in writing this so as not to reveal anything about the author or his product, or even the robot it uses for its greatest features. My aim is to do what he did for me: Pass on a little education. That others too might learn a little something about double edged swords, well, so much the better.
The following is a copy of the message I sent out to all the members of our “Monsters Against Myeloma” facebook fanpage:
Where to begin, where to begin… If you grew up in the 90’s, like me, you might know what I look like. Yes, that’s right, Krillin from DragonBall Z, minus the robes and muscles. Add in Will Smith ears and, now, a never-ending forehead (or in the words of Rihanna, “5head”), then VOILA!
Two days ago, my family decided that it was time to shave my mom’s hair. To say that that was traumatic would be a small understatement. So yesterday, my brother and I shaved OUR heads to make mama bear feel better. Needless to say, hair is NOT just hair. Hair loss is a common side-effect of chemotherapy seen in cancer patients. Although many will often say that “Hair is just hair, it’ll grow back”, the issue can often run much deeper. Hair is not just hair, it’s something that is a part of our being, like our laughs and our smiles. The hair loss associated with chemotherapy is a strong symbol of a cancer patient’s plight. Before all this stuff happened to us, as someone viewing from the outside-in, I used to associate the hair-loss as a sign of frailty, sickness, and vulnerability. However, my perspective on the issue couldn’t be any more different now. Now, whenever I see a patient suffering from chemotherapy-induced hair loss, I see it as a true sign of strength. This might sound a bit awkward, but I really do think that this image, this “symbol”, is actually quite beautiful. To see someone fighting so hard and willing to do whatever it takes, it is a sign of bravery, strength, and perseverance. One that deserves a standing ovation. I don’t usually send out messages that are so personal, but I thought that this was important.
My hopes are that, through this message, your views of the “typical” cancer patient will be changed (if you see them like I once did). That baldness, that fatigue, that struggle. It is something to be admired. These people are *literally* fighting to live, fighting for things that we take for granted every day. They are fighting for a walk in the park, a swim in the lake, a moment to laugh. They are putting every single ounce of their BEING into fighting off a terrifying beast, so much so that they have no energy left to eat, walk, or even talk. This courage and strength is something to be admired. So, without sounding too preach-ey, the next time you see a cancer patient, please keep this message in mind.
In conclusion, I leave you with this:
There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head. ‘Well,’ she said, ‘I think I’ll braid my hair today.’ So she did, and she had a wonderful day.
The next day she woke up, looked in the mirror and saw that she only had two hairs on her head. ‘Hmmm,’ she said, ‘I think I’ll part my hair down the middle today.’ So she did and she had a grand day.
The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. ‘Well,’ she said, ‘today I’m going to wear my hair in a ponytail.’ So she did and she had a fun, fun day.
The next day she woke up, looked in the mirror and noticed that there wasn’t a single hair on her head. ‘YEAH!’ she exclaimed, ‘I don’t have to fix my hair today!’
Health, Hope & Happiness my friends
A few pictures from the last few weeksWe went to a family reunion in Star Valley, Wyoming. It was wonderful! Seventy people attended for a weekend of horse rides, four-wheeler rides, games, crafts, good food, wonderful family, and a lot of time to relax, visit and enjoy.
Having a baby shower for my daughter-in-law. Only three weeks left, but I think she will be earlier. We both feel nine months pregnant! We are both tired and full of anticipation for a new life!
And now for endings……..
It’s day 15 cycle 12 of my treatment. This means I have one more shot of velcade-chemo on day 18 and then I am finished with this regimen!!!
That is 12 months of chemo! during this treatment cycle. Twenty-one months since diagnosis. Two autogulous stem cell transplants involving more chemo. For a grand total of twenty-one months of chemo. (More posts to come on this subject.)
Almost two years of this grueling pace.
This life changing,
completely consuming journey.
A few weeks ago a doctor asked if she could give my phone number to a woman who was just beginning this journey. I agreed but never did get a phone call from her. I spent some time thinking about what I would tell her. Wow where would I even start. How would I express all of what she would go through. How much could I tell her and what is better left unsaid.
What I knew for sure is that if I could do it she could do it.
Here are just a few of my thoughts.
Take it day by day.
Multiple Myeloma acts differently in every patient.
You will probably get extremely ill.
But it will get better.
Now I deal with extreme fatigue and pain.
Maybe you won’t.
You have to go easy on yourself and let the little things go.
The dishes will eventually get cleaned.
The floor will eventually get swept.
The cobwebs on the ceiling don’t hurt anybody.
The shower is a great place to cry and sometimes you just have to let it all out.
Try not to isolate yourself.
If you are feeling that way call someone up and ask about how they are doing.
Do something for someone else, thank-you cards, phone calls.
Nothing takes the place of the support of family and good friends
Many people will be scared of cancer and won’t know what to say or do. Try to understand that and go easy on them. This took me along time to understand.
Seek for spiritual guidance through study and attending your church as much as possible.
I am L.D.S. (The Church of Jesus Christ of Latter-Day Saints) and partaking of the Sacrament has become one thing that I try not to miss even if I don’t feel well. The words and meaning of the Sacrament prayer gives me great peace and takes away my pain.
Wow what a life altering journey you are beginning!
We are so blessed to having been diagnosed at this time. As recent as 7-8 years ago there were few options for treatment. Now there are many. With many new drugs in trials and genetic testing starting to be used to specialize treatment to each individual patient.
There is much hope of turning Multiple Myeloma from an incurable cancer to a chronic disease.
This is tough but you can do this! And there will come a day when cancer will not be on your mind every minute of every day. It is definitely still on mine but the frequency will decrease.
Try to look for the happy and simple things in life that bring you joy and cherish every minute of them.
To the woman I have never met who is taking the first steps up this mountain, I wish you the very best. May your transplant and treatment go easy and if not may you have the strength and courage to take another step each day. May you move this mountain by changing your perspective and view of this perilous steep journey as you climb higher; taking the time to get down on your knees and pray for divine help as you overcome the challenges of this climb. You will receive his help.
Please feel free to add your perspectives and comments to my post. So I can track down this new patient and share with her the wisdom of others on this journey and besides (I need to know if anyone is really out there:)
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.
I’ve put this off for more than a month, folks. It’s like a tape I could just play for you over and over. But this time, there’s a new twist.
The good news is: no more chemo. The Cytoxan produced minimal results; nowhere near enough improvement to justify continuing with this horrible poison. My treatment options at this point are not good. I am seeing a world-renowned oncologist in whom I have complete faith, but it’s the nature of any oncologist to want to do something rather than nothing, even if something is horrible and has very little chance of producing better results than everything I’ve already tried. He proposed a high-dose chemo regimen that sounds 100 times worse than the Cytoxan. In my current condition (and I needed another transfusion Saturday), I’m pretty sure this “cure” would kill me.
Being a good girl, doing as I was told for the last two years — especially when it was contrary to all my instincts — has been a psychological burden almost as great as the physical ones I have endured. I was ready to hang up my spurs a year ago, but it didn’t seem fair to my family since at the time, they believed remission was just one more chemo treatment away. Although I didn’t see the need, I did get a second opinion this fall. I’ve been in treatment now for more than two years, with very few (very brief!) breaks: radiation, a stem cell transplant, and six kinds of chemo including a clinical trial. So I’ve decided: Enough. My medical team is very supportive and, I suspect, just a tiny bit relieved, too. I’ll be switching to what they call “palliative care,” which is just treating the symptoms as they arise.
I’m hoping to regain some health, and enjoy the best possible quality of life for as long as I can. I’ve still got a long way to go; two doses of Cytoxan practically killed me. I doubt I would have survived six. Even if I don’t improve a whole lot from where I am today, just knowing that I don’t have to keep infusing poison into my body fills me with joy. If I had a spouse or children, I would be more inclined to try anything, to squeeze as much time as possible out of this life, but I’m finally giving in to that inner voice, and it’s telling me to choose quality over quantity.
As you might imagine, this was not an easy decision. But after 2+ years on the front lines, getting sicker and sicker instead of better and better, I know this is the right choice for me. As soon as I shared my decision with family and a few friends, I felt immense relief and gratitude.
If you happen to disagree with my decision, I don’t really care, so please have the manners and good grace to keep it to yourself.
P.S. Every patient is different, but they all share the right to hope for the best possible outcome. In my case, the “best possible outcome” has changed a little. MM patients and their loved ones don’t need the details of my particular situation, so this is my last MM post.