I’ve “met” quite a number of MM, MGUS and SMM folks throughout the years (see my September 12th post titled “Staying in touch”; incidentally, thanksthanksthanks for writing to me and letting me know how you’re getting along…your replies made me soooo happy! :)). Most of these encounters have been online/virtual ones…through my blog, through the myeloma patients’ listserv (MM Support) and, more recently, through Facebook…
I’ve established strong ties of friendship with some extraordinary, myeloma-connected folks. No matter that we may never ever meet in real life. You guys mean a whole lot to me…But, like I said, no mushy stuff! 😉
It’s not always easy to be a member of the myeloma community. Sometimes you just want to go lie on a warm sandy beach and ignore what’s happening. I’m referring to when community members, after being through some very harsh treatments, discover that their myeloma has started up again. I’ve lost quite a few friends (or the partners of caregivers who mean a lot to me): the first was Hans…then Eric, Bob, Lucie (=pancreatic cancer), Vern, Hamada…Nancy…and a few others…
Well, I’ve recently learned that two of my best best best buddies aren’t doing too well…CRAPCRAPCRAP!!!
One of them wrote a message a few days ago, a message that I read only about 24 hours later!, announcing that she was out of remission and officially in relapse mode. She added that she didn’t want any “mushy stuff.”
Well, let me tell you, “mushy” was, and is!, far from my thoughts. I don’t like “mushy,” either. Last spring, e.g., I met up with two cousins I hadn’t seen in a few years. After hugging me, the first thing she did was ask, with an extremely worried and grave look on her face: “So, how ARE you?” I was so taken aback that I didn’t reply immediately. After a pause, she added: “Y’know, you really look fabulous, for someone who has what you have…”
Uhm…
So forget “mushy”! Bloody ‘ell!
No, what I felt the other day, after reading my friend’s message, was mainly anger (though ok, I confess to having shed a few tears while driving to work…eh…)…anger at this bloody cancer…anger at the overly-toxic side effects of conventional treatments, which, in my opinion, could be easily attenuated if integrative oncology methods were used…
But hey, it’s pointless to get angry. Anger won’t help my friends and certainly won’t help me. Doing research is much more constructive…and I also thought of opening my medicine cabinet and choosing one of the substances that I was thinking of testing on myself but haven’t yet, for a variety of reasons. If something works for me, perhaps it might work for them, too. I just have to decide what I’m going to test first. Sesamin? Guggulsterone? Which might work the fastest? Which might be best?
You two hang in there, hear me? You’d better!!! Or else! Don’t make me get all MUSHY on you! 😉
P.S. By the way, this is a minor matter, but I did want to mention that, after almost three weeks!, I still have a cough. I must have caught an extremely evil, “cling-meister” sort of beastie. My family doctor is puzzled. Four days ago he put me on prednisone, which hasn’t eliminated the cough, as we’d both hoped. He’s having my phlegm analyzed (I went to the hospital four days ago for that test), AND he’s seeing me in his office this evening. He suspects I might have a fungal infection. Nice. Not. Sigh.
Anyway, I’m writing this brief update mainly because I was really unreasonably harsh towards Manuka honey in a recent post. That wasn’t fair. I mean, antibiotics got rid of the infection but not the cough. And, after all, Manuka worked splendidly for the first week (=my cough got much better, and my phlegm was absolutely normal). It was after I began taking a “lighter” UMF Manuka that it stopped working…
And antibiotics didn’t eliminate the cough, either. And even cortisone seems to be in a bit of trouble. Oh, I should point out that I have always felt FINE and still feel FINE (hence, I’m not postponing my upcoming trip to the U.S.; in addition to feeling fine, I’m not contagious anymore)…I just have this occasional, rather vexing cough, especially at night…No big deal, but I do want to get rid of it once and for all…
Hope you are not eating any dairy… it makes it hard for the immune system to get rid of the elements of the cough and creates more mucus/phlegm but amazingly few doctors ever tell their patients to quit drinking milk or cream and to stay off butter until the cold goes away! Just sayin’….
Could easily be a bit of asthma playing up as well. Do ask the doc next time you are there. Night time coughs are a strong indicator. You don’t need to wheeze to have asthma.
Have you tried fresh ginger, Margaret? I have a cup of fresh ginger tea most days (just grate half an inch of root and add boiling water) and two or three a day if I have a suspicion of a sore throat. I’ve found it to be really beneficial. It has antiviral, antifungal and antitoxic properties and also stimulates secretion of mucus, thus soothing your cough. It has many other benefits, too.
By the way, I so agree with you about the ‘no mushy stuff’ and have frequently had the same reaction (you DO look well, but ….)!
Good to know your flem is okay!
When we enter, or rather are thrust, into the world of myeloma we can either keep ourselves to ourselves or we can chose to share the adventure with others in a similar position. We know that as things stand at the moment it is inevitable that the ‘drop off’ rate is going to be a tad higher than in non-myeloma related associates BUT there is no doubt in my mind that it is worth it because any trip is enriched by good company.
And speaking of Lucie, when I was briefly on the gastro ward in Feb, the lady in the next bed was diagnosed with pancreatic cancer and I overhead her say that she’d always wanted to give cross stitch a go. A family member said she should wait ‘until everything was over’. Uhhhh, I thought. After they’d gone I suggested she should start now and it would give her something to concentrate on while ‘everything’ was being done. I had B bring some of my patterns in to give her ideas, because as we know there’s no time like the present. 😀
Hi Margaret, I read your blog often since my dx.8/11. My local hem/onc suggested chemo for me without knowing my stage and the fact that I lacked the CRAB criteria. I remember your brilliant explanation of that. I just went to the NIH/NCI in Bethesda, MD for advanced testing including a concurrent MRI/PET scan. It’s the only one in the US. The myeloma team, headed by a brilliant doctor, Ola Langdren, told me I was definitely smoldering according to current standards and they are going to monitor me every few months in a Progression study dealing with MGUS, Smoldering MM and MM. They also told me my original BMB left a lot to be desired and will do a more sophisticated one. I am already taking your recommendation regarding curcumin and following your regimen. The bottom line is that one must be one’s own advocate and see a real MM specialist who knows what the hell he/she is talking about–but for my eval. at the NIH, I would possibly be on chemo. I am also going to keep my eyes opened for clinical studies dealing with non-chemo smoldering studies i.e. gene therapies, vaccines, etc.