the susie solution

Since sometime last Fall, my life has been crazy.  If I didn’t have my phone calendar to keep track of what appointments are when, I’d be totally lost.  I mean, I do try to make sure I transfer all appointments to the big wall calendar at home, but the wall calendar doesn’t have an alarm that goes off a half hour before the event to remind me, “Ahem.  You ARE remembering that you have an appointment at A:BC o’clock, right?”  For most of February, and all of March, April, and May I had at least one appointment or scheduled necessary activity, if not two, and sometimes three, either for me, or my mom, or my cousin,  almost every single day of every single week.  June was looking a lot better, but that got turned on its head as well.  Let me elucidate….

My daughter:  I didn’t mention in the previous blog that Bethy ended up on a week of modified bedrest that first week of February because of premature labor.  I was so booked up that I was only able to come over to help for one morning, I think.  (She had plenty of other help, for which we were both thankful!  She has many othermothers, and a flock of friends.)  Early in the morning of February 13, my newest granddaughter, Rosalie Julia, made her grand entrance.  For the next month, I helped when I could, but with all the medical crises of my two caregivees, it wasn’t as much as I’d have wished.  Rosie’s sisters adore her.  Stay tuned for once she starts crawling; that tune may change! Rosie is a smiley, smiley baby, and a total people-person, very interactive and talkative.  I can hardly believe she’s almost four months already.

My mom:  Since the February 8 post, it was determined that the brain tumor hadn’t grown at all and was, in fact, slightly smaller, if anything.  The severe nausea abated, though she continues to have problems with milder, occasional nausea even now.  She had bad problems with gas for a couple more months, the only relief for which proved to be ginger ale.  She was prescribed lidocaine patches for her back pain.  These help a lot, but are impossible for her to put on by herself, so she had to have the services of a health care aid friend.  We ended up changing doctors, and bless the day we did.  The new doc discovered that she has two collapsed vertebrae since all this started.  She did finally resume the cancer drug at its lowest dose at the end of March, and has been able to tolerate the mild side effects.  By early May, she had regained a lot of energy, and was back to doing 10 or 15 minute walks around her community, doing housework and gardening in short stretches, dressing in her normal skirts and blouses instead of easy-to-put-on sweats.   Then two weeks ago, she suddenly lost all energy and was huffing and puffing as badly as she had when she first was diagnosed, so weak she could barely walk, and was somewhat incoherent in her thinking.  Blood work revealed an elevated white blood cell count and a CT, pneumonia. (Bright side, it showed the lung tumor has shrunk some.)  So that night they started her on a quinine-related antibiotic, levoquin. Emotionally, these last months have been extremely difficult (no duh, huh?).  It’s hard being jacked this way and that, it’s good, it’s bad, maybe you’ll live for years, maybe you’ll be dead within months.  Even with a strong faith, KNOWING the suffering that all but certainly lies ahead is not a pleasant prospect – and is hard not to think about.  So she had asked for medication to help deal with the anxiety/depression.  As it happened, they started her on Zoloft the day after starting the levoquin.  That night about 10, she called me to tell me that she’d been hearing and seeing things that weren’t there since sometime mid-day!  Into the ER.  They immediately replaced the levoquin with a cephalosporin drug IV, and took her off Zoloft.  Her white blood cell count was even higher than the previous day’s had been.  A head CT the next day didn’t show any obvious reason for the hallucinations, so they were put down to a reaction to one/both/combination of the drugs.  She stopped seeing things by the end of that day, and hearing things by the next morning, and since her white blood cell count had come down significantly, too, she was allowed to go home.  She is very slowly recovering from the pneumonia; it may take a month.  However, the head CT showed that the low dose of the cancer drug is not being effective on the brain tumor; it has grown substantially.  The CT also revealed a number of a type of small strokes called lacunar infarctions. (No, I’m not making that name up; my mom has brain farcts.)   She is now on a 325 mg./day aspirin regimen to prevent more of them.  There is nothing predictable about her situation, and that’s all there is to it.

My cousin:  Longer time readers will recall that I am also caregiver for my husband’s cousin here in town, Marie.  She is a brittle diabetic who has never taken care of herself as she should, and is now suffering all the consequences of it.  Every system in her body is affected.  She’s almost blind as a bat.  She has virtually no feeling in her right foot, and only partial in her left.  She has many vascular problems as the arterial system is both deteriorating due to the diabetes, and getting clogged from plaque due to poor diet and a near total lack of exercise because of severe arthritis in her hips, back, and neck.   She has had some silent heart attacks.  The vascular shutdown has led to her developing vascular dementia, the primary reason I had to take over her financial, legal and medical affairs.  How she has pushed herself to do what she does to keep on going and to do things for herself, in spite of her extreme pain and near-constant exhaustion amazes me; I don’t think I could do it.  She truly is a role model for me.  Her son got out of a 20 year stretch in prison last year.  She has spent the last 20 years living for this time, dreaming of what it was going to be like, but things have gone very badly.  Her son has inherited not one of her traits of independence, of making do rather than asking for hand-outs, of being grateful for what you have, of integrity.  She has seen all her dreams of the future blown to smithereens as she has realized that the son she has sacrificed for all these years is NOT the son she actually has..  Her health – physical, mental, and emotional – has deteriorated in the last 6 months in a nosedive, bringing extra visits to cardiologists, vascular surgeons, psychiatrists, physical therapists, CTs, MRIs, urgent care, as well as more frequent check-ups with her regular provider.   She has had an incredibly hard life ALL her life – you’d never be willing to see a movie of it because it would be too intensely depressing! – and to now realize that the end of it is going to be just more of the same **** she’s dealt with for the entire memory of her existence……  it’s no wonder she is now dealing with severe anxiety and depression, in spite of her heart and soul love for Jesus.  She is deeply appreciative of the love and care I and my family  have shown her, but having never been loved before in all her life, she does not know how to receive it.  Although WE consider her as part of our family, she always thinks of herself as an outsider.    

Me:  Trying to cross some rocks across a river last September, I took a fall.  Didn’t go all the way down – caught myself on my hands going forward, but really did a twist.  For most folks, it might have resulted in a few hours or a day or two of feeling a bit sore, but because of skeletal abnormalities I have, it really did a number on me.  As usual, when I’ve had to stop because of an injury, when I did try to start again, it set off headaches, so I backed off and waited, then tried again, more headaches, waited , tried… and the wait between got longer and longer, and I couldn’t get past the headaches.  Then the roller coaster ride of my mom’s and Marie’s situations started, and even attempting to exercise went out the window.  My eating habits devolved to whatever was easiest to grab, because eating healthy takes time, energy and thought, none of which I had to spare. I had a lot of trouble sleeping, in spite of my meds.  I felt like I was just a leaf in a river, going down rapids at that, with no control.  But in March I finally started seeing a physical therapist, and though it’s very slow going because I’m not as faithful at doing my exercises as I should be, it IS improving.  Last week I even did my treadmill three days.  I’ve been doing a lot better at prepping veggies so they’re ready in my frig, so I’m eating better.  I’ve even cooked actual meals a few times a week for the last month.  My doctor figured out that the dose of thyroid I take had gotten too high for my body’s needs, and since we lowered it by a third, I am sleeping ever so much better.

The stress has certainly pushed my bipolar buttons and I have sometimes found myself close to the edge emotionally at home.  But I always remember this:  Once the appointments are done, I get to go home to my nice, normal life.  Mama and Marie don’t.  I’m not having to live with cancer like Mama.  No matter what I may need to do for her, it will never be as hard as what she is going through, and what she has yet to go through, barring the unexpected gift of a sudden death from something else.  Unlike Marie, I don’t have diabetes and arthritis and dementia and and and, so that all I have to look forward to is getting worse and worse and worse.  None of my kids are breaking my heart.  I don’t worry about any of them becoming homeless.  I’m not lonely and isolated, unable to drive, with no hobbies and nothing to do but watch TV and hold my chinchillas.    The same loving Father is with us all, and gives grace to us all, but I have to readily admit that I have the easier portion right now!

When people ask me what I’m up to these days, I often roll my eyes (and sometimes laugh) and tell them, “I don’t HAVE a life right now – I have other people’s lives.”  To a great extent, it’s true – my life is taking care of THEIR lives.  But in reality, my life isn’t my life anyway.  The verse that keeps going through my head in the last months is from Psalm 31 “My times are in Your hands.”

Years ago, when my migraines and fibro were at their worst, and I felt terribly guilty about the weight my kids, especially Bethy, had to carry to make the household run, God made the point to me that what was happening in MY life was His will for THEIRS as well.  (In the years since, He has shown me one impact my illnesses had on my kids:  they all have a deeper level than usual of compassion and understanding for the hurting and the sick and the weak.)  God’s purposes for events in our lives are never limited to just “us”; He has much broader things in mind.  Much as my mom and Marie sometimes (ok, with Marie it’s ALL the time) feel guilty for the fact that they need my help, or for how much of my time their needs take, it’s not their choice – it’s God’s purpose for this time in their life, and His purpose for ME for this time in their life, too.   

These times are sometimes stressful, sometimes exhausting, yes, but when I keep the perspective that my times are in HIS dayplanner, I know that I’ll get through – and be glad that I kept the appointment!