Jan, MM Caregiver & Friend Extraordinaire!
“You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.” – Eleanor Roosevelt
What a GREAT day I had yesterday reading about some Multiple Myeloma Caregiver friends having great news to report.
First, Jan, to your left there, wearing one of my scarves I made for her when we were there for a checkup. A beautiful boucle scarf by Blue Heron that I wove just for her to help “freshen up” her wardrobe!
She and Bruce went for a “check up” in January this year and Bruce had relapsed. He is very high risk and while he had failed treatment back home initially, Jan contacted me online and our friendship began. She was desperate to find hope and treatment for Bruce, who seemed to resign to his fate. Jan was still working full time and this, as for all of us, was such a distressing set of circumstances. Nick and I convinced them (separately) to include Arkansas in their second opinion consultations. They did and Bruce enjoyed a full year of CR pretty quickly. But as we now know, Barlogie can pretty much get anyone in CR, but the durability of it for the High Risk group is very illusive. He is desperately, and successfully, getting all the big name researchers to turn their focus to the High Risk group of MM patients. It is here, in this group, that he believes is the key, the answer, the cure. He has learned that the molecular presentation of the Low Risk group is the same as the High Risk group. All Low Risk MM patients have the potential to be come High Risk once they relapse. But I digress…
So, Bruce has been through the gauntlet of treatments since January, with many stays in the hospital. Jan packed “the lightest we ever have” and was getting SICK of her wardrobe! Thus the scarf gift when we managed to meet up and get out for a ladies lunch which consisted of Margaritas and appetizers. We were headed to the Starbucks for a foo-foo coffee when we looked across the street and said, “Nah, let’s go there and have some serious fun!” And we did.
Ok, so Bruce, who is like the most wonderful big teddy bear (though he’s lost some of his fluff, but not his warmth and kindness) has been deemed in CR as of this week! He was originally slated for the Natural Killer Cells protocol, but because of his condition at the time and the red-tape to get started on brand new protocols, it was continually delayed. Now that he is CR he does not qualify, which Jan is happier about. She was understandably nervous about trying this new procedure just yet if there were other options.
Then, I read that Miss Angie, who I met when I went to Arkansas to deliver my first speaking engagement as a Caregiver, back in November 2010, reported that her guy, who is also a High Risk MM patient has maintained his CR!!!
Then, Jodi, who I have only met through FB connections, reported that her husband who was in Arkansas for new staging and treatment, has a PLAN for his MM and is in the process of beginning his treatment course.
But the really cool thing, was we all came together through Facebook and knowing one another there. As I could see that each of them was in Little Rock from their FB entries, encouraged them to contact Jan while they were there and they did and they all went out together! (They probably would have without any nudging from me – they are a pretty savvy bunch!) I was so jealous and excited all at the same time, that these three amazing women met in the flesh in an otherwise horrible situation and now know each other better! I can’t emphasize enough in dealing with a rare disease to connect up with others going through what you are, for support, understanding, camaraderie, information, and strength! We have no MM group in my area and many do not. It is one of the miracles of the internet these days that I appreciate so very much. A Myeloma Meet-Up! (One of my favorite activities.) I enjoyed it from afar!
Then… Jan has been asked, since she practically LIVES in Little Rock now, to help facilitate a new MM support group in Little Rock for the High Risk group. This group of patients has a unique challenge. Their treatments are aggressive and harsh and completely different than the rest of us. High Risk makes a tandem SCT seem like a walk in the park! It is like being on a roller coaster on steroids (no pun intended on the steroids part!) I can think of no one better qualified, knowledgeable, or COURAGEOUS than Miss Jan. I’m so proud of her and to call her MY friend is incredibly precious to me.
Caregivers, while usually spouses, have a never ending job. We have a unique experience in Myelomaville. Rising to the occasion to face things that were certainly not on our radar, and often we have never done before. Seeing what needs to be done and coaxing others, including our patient, to move in the direction that is all too clear to us. Sometimes it feels like you are herding cats, as they say. In so many ways it is the same as the patient, except while we don’t have the chemotherapy treatments running through our veins, we experience it all from the front row seats in the VIP section. Often, being the only one in that box except for the occasional visit by the rest of the team. It’s difficult, it’s personal, and feels as if there is no end in sight. The patient has a cushy recliner, warm blankets, etc. We get a hard chair pulled up close to the bed or recliner, watching them sleep, getting them food, water, paying attention to anyone who approaches them. “Who are you? Why are you here? What are you doing? What is that? May I check it please? Did they wash their hands? Is that a sniffle?” Notebooks, cellphones, laptops, knitting, books, lab reports, chemo orders, schedules, it’s all carried in our bags, hauled around like an appendage. “We need a wheel chair? How long is the wait? Where did I park the car? Do I have the parking pass to get validated?” On and on and on. Groceries, laundry, making meals they can tolerate. Med schedules, flushing port lines, infusers, pharmacy runs, emergency phone numbers, INSURANCE BS (!), classes to enable us to care for them away from the facility. Waiting and waiting for our appointment with the doctor. And the worst, watching others in more dire circumstances, distressed and afraid, hoping beyond hope, that isn’t going to be us.
Often the fears and the worries are suppressed for our loved one. We don’t want them to know how scared, worried, or tired we are. We sleep with one eye open. Working hard behind the scenes, being vigilant about their treatment and our observations. When we return to our seat next to our partner, it is one of strength, focus, resolve, and all those fears get buried deep inside. I don’t know where they go, but I know they are lurking and can rear up at any unguarded moment! We aren’t going to let our loved one see us flinch. NO WAY! NO HOW! But whenever we get the chance, reaching out to other caregivers is THE PLACE we can LET IT ALL HANG OUT! We cry, we laugh, we pray, we offer each other strength and perseverance. It’s like a shot of expresso on all levels – energy, spiritually, mentally, physically.
You are my HEROES!
Whether you say hello or not, I know you visit and I see that you are reading my ramblings. And while I may not know you, I think about you everyday. When I get away and spend my time weaving and other wonderful things, you are never far from me. I wish for you moments like these ladies had yesterday and I always hope that in sharing these things, you garner the strength and perseverance to continue moving forward. Jan and I both often comment on what she calls, “Myeloma Blessings.” – YOU. All the wonderful people that we meet in Myelomaville.
You are not alone.
Lori, many thanks!! I am extremely grateful for your posts~ Knowing that others are also out there being courageous, doing their best, gives me hope. I know that with God and friends, I can do this caregiving gig- even gracefully somedays.
You are most welcome and I really did write it down! I have it in my stash of wishes.
lori, what a good idea, an exercise to quell those unbidden thoughts that we all feel weighed down with, by visualizing the outcome we want! i love what you wrote for hugh and me – thank you!
Karen, so good to hear from you, as always. In your last PS just remember my mental exercise. As the worrisome thoughts creep in, use them as “reminders” to substitute them with what you WANT. Chat with Hugh about it and make it a game. Find out what your postulate is, clearly stated. Write it on the fridge and each time you feel that nasty terrorist hit your psyche you remind yourself to re-read, re-think, re-state your intention. And when you say it, think it or write it, do it as if it is already true. Not “will be fine”, but “is fine”. So something like, “Hugh’s tests are all uneventful and the doctor is over the top pleased with how well Hugh is doing!” You get the idea. It helps me to do this to shake off the “willies”!!! Sometimes I even write down several different versions, all of which I can totally live with. One that is over the top miracle type. One that is really great and one that maybe I wish were better, but it’s satisfactory. Each will have their own realistic comfort zone. But you can improve your reality greatly with this exercise. It is quite ancient and there is even a version of it in the Old Testament. God said to “pray to me as if I have already granted it to you.” Or something like that. But it’s been around a long, long, time. It takes practice to do this innately, but it’s well worth the effort and this will be an excellent time to develop it, I’m thinking. So here is mine for you, and yes, I’ve written it down in my stash of such things I keep to remind me, “Hugh and Karen have FABULOUS NEWS! Hugh remains in CR and his tests show remarkable improvements! The doctors are pleased.”
lori, what an amazing thing that you were able to facilitate the wonderful MM caegivers who are so dear to you to rally round jan in arkansas! you must have been over-the-moon happy! i can just imagine how much you wanted to be with them, but i bet you were – if not in body, surely in spirit and in their hearts. and what you wrote about being a caregiver, and all it entails – that’s why so many of us are so grateful to you. your parting message was so touching and meaningful; that you think of us, and that we are not alone is such a comfort. thank you, thank you for such a fabulous post. warm hugs, karen p.s. hugh has a big appt. with his mm specialist on the 5th, 5 mos. post his 2nd SCT, and we’re just feeling that teensy bit of anxiety starting to surface. i will re-read this post to feel the solidarity of courage, strength and hope to get us through the next few days.
This is so beautiful. You are very special people and we thank God for all of you. Angie, Mike is very fortunate to have you. Thanks fr sharing Lori’s writings.
And of course I didn’t even touch on all the “other stuff” in our lives – children, family, friends, pets, homes being burglarized, floods, fires, lost jobs, babies being born, graduations, marriages, divorces. Jan’s mother died while she was in Little Rock. And her father has since passed away as well. She didn’t even have the luxury to grieve.
Sometimes it can feel like the world (certainly ours) is coming to a head akin to Armageddon. And yet, caregivers, stare it all in the face – hard and head on, often at their own peril, without hesitation or a thought for themselves. General Patton would be proud to stand with an army of myeloma caregivers and our enemies would tremble!
Great post Lori!! You described our “world” of caregiving and new normals perfectly. What wonderful updates to report on too; good stuff 🙂
🙂 Thanks for making me smile AGAIN…..just thinking about meeting up with friends this week…..and all the friends that we find through the MM world.