“Opportunities to find deeper powers within ourselves come when life seems most challenging.” – Joseph Campbell
As I alluded to in a recent post “Prayerful Thoughts”, two of my myeloma friends are struggling at the moment. One chose to manage his disease and has done it quite well for some time. Another who had failed treatment locally, went to Little Rock and enjoyed complete remission as a result. He is “high risk” in his presentation. With a little over a year of remission, his numbers were rising, and then rapidly. They were scheduled for a check up in LR and as they suspected, he was no longer in remission. Early on, Dr. Barlogie had told them that his presentation of myeloma was nasty, high risk and would be sneaky. I was reminded of this when they could find no myeloma anywhere in all the usual tests. MRI’s, PET, bone marrow biopsy. They knew it was somewhere though because his labs indicated it was. He had a spot show up on one of his kidneys in the scans. Barlogie ordered a needle biopsy of this “spot” and sure enough, there it was, the myeloma, hiding in his kidney! I’m amazed really, and then saddened of course. On the one hand you are happy they found it, because it was indeed somewhere. But sad that he enjoyed such a short remission and now is back in for more treatment, more chemo, perhaps a “mini” boost of stem cells.
When I think back on all that we went through, with tandem stem cell transplants and in-between bridge therapies, and how happy we were to be DONE, I remember now, distinctly thinking at the time… I don’t know if I could go through this again. At least not for a while. A long, long while. In many ways, I’m still recovering emotionally. It embarrasses me to say that, being a year and a half past our last treatment there. As I was chatting with my friend’s caregiver, I could only think how hard this would be for me to do what she is doing now. Again. So soon. But as she said, and what I would say, “What are you going to do? You just deal with it.” What else can you do really? One foot in front of the other. Somehow finding strength you just couldn’t imagine you have, but it is somewhere deep in the core of who you are. You get through.
It is these times that its really helpful to know others who are in “Myelomaville” (Sean Murray’s reference). People you can talk very frankly with about the details of the disease and the tests, as well as how you are feeling emotionally – the good, the bad and the ugly. Stuff you wouldn’t particularly share with others. That dark stuff we all are afraid of in the deep recesses of our mind – the fear, the what ifs, the worry. It does us no good in the big scheme of things, but sometimes, it helps to just say it out loud to someone who really does get it. Someone who has had those same scary feelings or thoughts creep into their own consciousness. It’s a bit of a relief really to realize that we battle some of the same demons!
As I mentioned in my earlier post, its not about me, but it feels intensely personal. They have become very dear friends to me as we crisscrossed in our journey in Little Rock. We have talked often and shared our lives.
To end on a more positive note… If you have been reading my blog a while, you know that no one can address High Risk Multiple Myeloma better than Dr. Barlogie at UAMS. He is heavily researching this aspect of MM. He is consumed with understanding why it does this and how to get it to respond to treatment more effectively. I have met people there who have relapsed and re-treated and managed to make it back out again for yet another complete remission period (people I wouldn’t have put money on to get to river bank in the fast current they were fighting!). So for my friend there now, I can only remain hopeful. What else can I do but glom onto those stories that offer hope and inspiration. Those who seemed to have no hope who managed to rally again. I’ve met them.
Dave and I will be headed back for our 6 month check in Feb and so we will get to see our friends as they tackle this next hurdle in their Myeloma journey. That’s the bright side for me. I will love to see them, though I would gladly continue to miss them if they were home happily still in remission, living their lives. But since that is not the case, we will get together and drink some wine, lots of wine! And have a few laughs. In Little Rock!
“In all things it is better to hope than to despair” – Johann Wolfgang von Goethe
Sigh… Angie… You have said it so well and so simply. We just must find ways to embrace each day as fully as we can and hopefully filled with lots of wonderful moments and laughter, even the most mundane of activities we engage in. To worry and fret just steals those opportunities for joy from us. The caregiver’s walk is indeed not an easy one. Thanks for reminding us when our shoulders sag a bit, to lift them up again.
Lori,
I hate to hear this story…with such a short remission….as my husband is also “high-risk”. But we must each battle with this horrible disease however it is thrown at is. That’s why we are trying to enjoy each day with each other. Your friends (and you) are in my prayers. The caregivers walk is not an easy one….
Sarah, Thank you for your comment. Getting feedback helps me so much to know if what I’m doing is resonating with other fellow Myeloma Journers. I sometimes feel like we are a rag tag band of brothers/sisters who happen upon one another in the forest, glad to make our acquaintance. Like the sun peeking through the dark canopy of trees!
So, glad to make your acquaintance Sarah. My best wishes for you and your husband and I will venture out to your blog and get the “scoop” on the details of your journey.
Hang tough, be courageous, forgive yourself in those difficult, seemingly “weak” moments we caregivers can experience. They are truly tough. I used to call it guerilla warfare! Fighting, like a brief skirmish, those dark demons in my mind!
Best,
Lori
Lori: Thank you for this post! Finally, someone has written what I feel.
We’re told that we are always supposed to be positive, upbeat, and looking on the bright side. Thankfully (as caregivers), we’re kept busy enough managing the care of our loved one that we don’t have time to “moan and groan”. But, alone in the darkness, or in the shower, or when I let my thoughts wander, the “what ifs” scare me to death.
I have a MM friend, via FB, that is currently going through a bad time. Even though I only know him online, my heart breaks at the thought of what he, and his family, are experiencing.
Compared to you and Dave, we’re at the beginning of this journey. The routes we take may be different, but we’d all love for the end destination (complete remission – or a cure) to be the same!
Keep writing and good luck in LR!
Sarah