RSS

Category Archives: faith

These days (on God and faith)

There are days I wake up feeling mad at God. And days I go to sleep feeling mad at God.

I’m not overly religious, but I was raised with religion. I follow many of our traditions but I do not attend services every week. I did not grow up attending services every week. My life now as an adult is pretty close to my life growing up. My family’s traditions and habits stayed with me through the years to now. When my grandfather died, my mother started taking my grandmother to weekly services because my grandmother found comfort in the ritual. And I think it gave my mother special time with her mother. When my grandmother passed away, my mother continued attending weekly services because I think it became comfort to her. She generally attended the services with my father, who only went because she did. Sometimes she went alone, but that was pretty rare.

I do not find comfort in weekly services, so I never got into that tradition. I found comfort in my family. That family is in chaos without my mother.

I’m angry at God for taking my mother away. I’m angry at God for not giving me the ability to heal her. I’m angry at God for leaving me with this emptiness, this pain, this loneliness. I’m angry at God for putting my father through his own personal hell.

I’ve had previous tiffs with God. When I first got sick, I was so involved with being sick that I didn’t have time to think about God’s part in it. When I got sick again–more on top of the first illness–I was tired and I wanted to just give up. I didn’t think about why I was sick, only that I was. But as the years went on and my chronic pain and other chronic issues continued, I got mad at God. Why was He letting me be in pain all the time? Why wasn’t He helping the doctors figure out what was wrong with me and how to help me?

Why did He give my grandfather leukemia? Why did He let my grandfather suffer? And why did He let my grandfather die at only 82 years old? Why did He give my grandmother an eye disease that left her mostly blind? And then the stroke? And the dementia? Why did He let her linger year after year, lost in her own mind, needing others to care for her physical body because she was no longer able? My uncle, my aunt…on and on.

Why the cancer released on my mother’s body? Why did it have to be so aggressive? Why so fast, so hard? Why did it have to ruin her body and her mind at the end? Why did He have to take her away from us?

I know a lot of people who find comfort in their faith. Some give all their problems to God and accept whatever the answer is. I don’t know how to do that. I don’t know how to get past the anger. I’m not saying I spend my days raging at God, because I don’t. But there are days when I sure want to rage and scream and ask WHY WHY WHY. How do I have trust in God and in a universe that has stolen my mother from me?

I watch commercials and I’m angry at kids with their mothers. When I’m out in stores I silently scream at kids with their mothers, wanting them to relish their time together because it won’t last. I’m jealous of Hub, who has his mother in his life. I’m so pissed off that my brothers had my mother in their lives longer than I did. I know these are petty things and don’t change what happened, but they are more reasons why I question God and faith and religion.

So many things in life I can attribute to decisions made by human beings. Why the election results? Too many people made the wrong decision. Why are people being killed in our cities? Too many people make wrong decisions, do bad things, trust the wrong people.

Why did my mother get an aggressive and rare form of cancer that took her away from me too fast and too early? I can’t blame that on a person or a decision. I can’t point to something and say, “oh that’s it! that’s why she’s dead and I’m living my life without her and my father is barely living a life at all…” Who else is there to look to? Who else was there to make the choice to give her cancer and take her away other than God?

Is any of this rational? Is anger at God rational? Does God even care if I’m angry at Him? Does God even care at all? Am I terrible for even asking these questions or feeling these feelings?

Hub often calls himself a heathen. He grew up with religion because his mother (and then his step-father) were religious. But he was very turned off as a youngster by the religious leaders in his community and he moved away from his religion. At this point I think he considers himself to be agnostic, though he deeply respects my feelings for my religion and traditions. These days I can more clearly understand his feelings, though not because of any religious leaders, but more because of my current predicament.

Despite my mother’s faith in her religion for most of her life, I don’t really know how she came to grips with any of this during her illness. It wasn’t something we discussed, mostly because I’m not sure she wanted to think about dying. At the end, I don’t know how much of her mind was still there, so I’m not sure she had time to question her faith. Even when we were at the point that the cancer had spread and there was no other medical intervention available, I don’t really know that she knew that. None of us wanted to say that outright to her, and when she didn’t ask specifically, we kept the information to ourselves. In those final days when her mind was still with her, we didn’t talk about the fact that her death was imminent.

I don’t know how to forgive God for my mother’s illness and subsequent death. I don’t know how to let go of the anger.

 

Tags: , , , , , , , , , , , , , , , , , ,

Rinse and repeat

So here I am, just days away from surgery number two. I wrote about my pre-surgery nerves in this post last time. I’m feeling pretty crappy these days, some of which is because I haven’t been sleeping. I’ve been having nightmares and I’ve felt overheated at night. I’m terribly heat intolerant, so it keeps me away and/or wakes me up when I’m too warm. And of course, if I’m warm when I try to go to sleep, then I can’t fall asleep. So it’s been sucky sleeping lately. Not a great way to go into surgery, I’m sure. Also, my throat has been dry in the mornings and my nose feels stuffy. I’m hoping it’s allergies, because I can’t take the thought that it’s a cold, which might (or might not) postpone my surgery. No fever, so I feel like just a cold won’t be an issue, but my anxiety makes me worry about it. Repeatedly and often. Woo.

In my previous post, I talked about all the prep work I was doing in advance of surgery. I re-read the post and feel kind of embarrassed at how much I was doing. I made all that food and ate none of it. I got all that yarn and used none of it post-surgery. I borrowed all those books and it was over a week (or more) before I could read anything. I used almost none of the things I packed to take the hospital. Even so, some of it was worthwhile. I’ll be changing and washing sheets in advance, because I like the comfort of the laundry detergent when I get into bed. Hub will be getting me deli turkey and making me gluten free biscuits because those were the two things I ate for the first two weeks, almost exclusively (great diet, eh?), along with plain water. So no soup, no lemonade, no mushrooms and cheese…that was all a waste of time the first time.

I’ll pack my small bag for the hospital with pain medications (leftover from the first surgery, so we don’t have to pay for them a second time), my gluten free chewing gum (peppermint, to get my stomach working again), and my pillow for the ride home. I’ll have my lip balm and my cell phone and my advanced directive (again). That’s pretty much it.

I’m still going to the library tomorrow, so I don’t have to go soon after surgery, but I know now that reading will be nearly impossible the first week. Even watching television was nearly impossible, because my brain just wouldn’t focus.

And on top of things, I’ll be worrying about surgical menopause. Woo hoo. There are horror stories about this, and I’ve been trying really hard not to read them. I talked with T about them at my last session, but I’m not sure I can be reassured about this. I’m mostly worried about the insomnia…and then the possibility for increased depression and anxiety. There’s a whole host of new symptoms for SM that I’ll have to learn, and that my health anxiety will have to feed on. I’m wondering if acupuncture might help. I’ve been trying to read about it, but I know full well that acupuncture doesn’t always work for everyone.

I finally saw the massage therapist last week. It was so nice to have her work out some of my muscles. I wasn’t able to lay on my stomach, but she was able to work most everything while I was on my side. I can’t say how much it all helped long-term, but it felt really good during (with the exception of the trigger points which generally hurt like a mofo). I really hope I’ll be able to get back to her more quickly after this surgery than after the first. My muscles really took a beating after surgery.

No matter the fact that I went through this surgery (basically) once before, I’m nervous. I know now how it is going to feel to wait in pre-op…and how I felt in the post op, and how gross and out of it I felt in recovery. And on the way home. And the immediate days following. I made it through, obviously, so I get that, but it doesn’t mean it was easy and/or no big deal. In the back of my head, I’m also thinking about actually making it through the surgery. I’m afraid. I don’t know another way to be at this point.

My PVCs have mostly dropped off in the last two weeks or so. I had some last night, but they were mild and didn’t last very long. I hope that continues, because I can do without those.

 

 

Tags: , , , , , , , , , , , , , , , , , , , , , ,

Ripples

We made it through the orientation session for Mom’s chemo, and then the first infusion itself yesterday. The facility was nice, the nurse was really great, and Mom had no allergic reactions or issues. The worst part was that she was annoyed at having to sit around for so many hours. The infusion center only allowed one person to sit with her at a time, so my father and I swapped out every hour or so. I would sit in the waiting area and he would sit with her. Then when he needed a break, he came to get me and I went and sat with her.

We crocheted, we talked. She played games on her iPad and read her book. We made it through the day with no issues. She had lunch during the infusion, I ate in the waiting room. My dad walked to a restaurant in the main hospital and ate while I stayed with Mom. I brought a ton of things to do–two tablets, my crocheting, my phone–and I kept myself busy. The infusion room were large and I felt like just in our area, there were about 15 people. The infusion center works with all kinds of infusions, not just cancer, so there were all types of people–ages, stages of health, genders. It was surreal, and I felt like I didn’t know whose life I was living. I don’t know how else to explain it, other than I never expected to see my mother sick. And I never expected to sit with her in an infusion center. And I never expected to look at her and SEE my grandmother. All of these things converged on me at once yesterday.

Today I can see the manic side effect in my mother already today from the steroids they gave her pre-chemo. There’s a huge list of side effects for her–including hair loss, of course–that we are trying NOT to anticipate. She’s as prepared as she can be, and from that we are going to take it one day at a time. And deal with what happens on that day without trying to anticipate what will come next…what will get worse or not.

I’m so happy that I’m able to help my parents. But I’m afraid of letting them down if I get sick, or can’t live up to their expectations. I know they would be able to navigate this without me…I’m not so vain to think they can’t handle things. I keep reminding myself that they would be okay, and that I’m going to do the things I can. And let my brothers and others help when they can.

And enjoy the time I’m spending with my parents no matter the situation we’re in at the moment. We can still have fun in the infusion center, so that’s what we’re going to do when we’re there.

I feel rambling. I’m going to stop now.

 

Tags: , , , , , , , , , , , , , , , , ,

How we deal

We are all different. We all deal differently with things. Some of us learn new ways to deal, some can’t ever change that part of themselves.

My way of dealing used to be researching everything until I was cross-eyed, sick to my stomach, and anxiety to the point that I couldn’t breathe right. I’d read everything I could on whatever the subject was (generally relating to my health, or someone else’s health), even when one thing contradicted another. I’d come away with probably less knowledge or understanding than I’d started with, and I’d be filled with stress and anxiety. And then when I was done trying to figure out how to breathe again, I’d dive right back in and start researching again. I thought I was doing something and that I was helping myself. I thought I was educating myself and learning how to fix what was wrong with me…whatever that might have been at the time. It was all a lie. Although I might have learned a few things, most of it just made me worry more and I ended up without any resolutions to anything I was researching.

I’m not researching anything anymore. Not for me, not for my mother, not for anyone. I don’t want to live that way anymore.

My brother started researching things as soon as he heard about my mother’s surgery. He’s tenacious and smart, and he thinks he knows better. Than pretty much everyone. Maybe even the doctors. He’s aggressive and angry, all of which comes from his abject fear. He needs to feel in control…I understand his quest, but it’s difficult for me to deal with. My mother’s pathology came back before she even left the hospital. Other than the original findings from the original uterus scraping/biopsy, they found nothing else in the organs they removed during her hysterectomy. But one lymph node had “microscopic” cancer cells. Her uterine cancer was diagnosed as stage 3, with a cancer that is generally aggressive. I want to say the doctors seem positive about her prognosis, but honestly I did not get the chance to ask because the last time I saw him, it was so brief and we were almost out the door when he showed up to see my mother. But his recommendation is for chemotherapy…a full course. He has already set her up for a second opinion with a colleague (my father is sure the colleague is just a “yes” man for the original surgeon and will rubber stamp his recommendation) in about ten days. She has chosen to focus on her recovery from the surgery, my brother has decided to spend the next ten days on the internet, reading and questioning everything…including the doctors. He sent me an email this morning (and to my father) with the subject line “opinion.” I skimmed over the first line of the email, then directed Hub to respond to the email, requesting that my brother not send me anything that has to do with his internet research. Then I asked Hub to delete all the emails to and from that might include anything that the original email said. Hub did it, and I went on with my day (after crying for a few minutes because I felt like I wasn’t do anything to help my mother because I wasn’t participating in the researching).

I went over to see my mother after lunch today, bringing over some groceries that Hub and I picked up this morning for them. Almost immediate I was attacked by my father. My father researches, but he only reads what he wants to read, and only understands what he wants to understand. He only hears what he wants to hear, and is just as likely to misinterpret and/or misremember things. He questions everything, but from a place of conspiracy and from the expectation of the worst. He thinks every medication out there is only to make pharmaceutical companies bigger and richer. He is sure everything that happens is going to be the worst case scenario. And he’s scared shitless. And driving my mother crazy. She doesn’t want to discuss this every day, or spend the next ten days until her appointment worrying about it. She wants to recover, she wants to live, she wants to do normal things. He wants to talk to her and spend his days researching and questioning and thinking and worrying and looking for the worst that could be. He wants to question the doctors and tell her everything he thinks they did wrong. He wants to tell her that she’s not worrying enough, or thinking enough, or planning enough. She wants to find faith and hope in G-d and in the future…in the daily workings of her life.

I told my father that nothing was certain. That the doctors wouldn’t be able to give him any certainty, even if he would believe them if they did (which he wouldn’t). They could give him probabilities and percentages, but even those are guesses. Because every person is an individual, and everyone is going to react differently. The doctors can’t give him what he wants, which is for his wife not to have cancer. My father argued with me every time I opened my mouth. And with every statement or attack he made, I could see my mother sinking down in her chair. I finally told him to stop talking to mom about this stuff. I told him that he might need to deal with it this way, but she didn’t want to, and he was just making things worse for her. I told him to go talk to my brother and to my uncle, both of whom want to do research and talk endlessly about everything. But to leave me and Mom out of it. He stomped off, angrily, and went to talk to my brother on the phone.

I turned to my mother and told her that she needs to take care of herself and her headspace. That she wasn’t responsible for how my father feels or what he does, but that she IS responsible for how she feels and what she does. And if he continued to talk to her about this stuff, she needed to reiterate that she didn’t want to hear it and that he was upsetting her. I then offered to let her come stay with me for the ten days, which we both knew was just a joke. I don’t want him to bring her down. I want her to feel positive and up and enjoy each day she has. None of us has anything promised to us. If she doesn’t want to spend her days worrying and reading the internet, she shouldn’t have to.

I want to be able to spend time with my mother doing normal things. If it helps her to feel normal by talking about every day normal things, I’m good with that. If she wants to talk about health stuff, I’m good with that. But I’m not going to spend my time thinking and worrying and researching and making myself ill. I can’t do anything for her by doing that. I can do the most for her by being in the moment and helping with everyday things. And if necessary, reminding my father and brother to go talk in another room where we can’t hear them.

 

Tags: , , , , , , , , , , , , ,

Post-surgery update

Good news is that Mom made it through her surgery and is doing well. The surgery seemed to take forever and I think we were going a little crazy in the waiting room, but that’s all over now. When the surgeon finally came out to say everything went well, I listened and asked questions, then when he left I got teary-eyed. And my family (my aunt and uncle, anyway) got all nervous. I just told them I was relieved and that was how I responded, and that I was okay. I turned away and started making phone calls and sending emails. But jeez, why am I not allowed to have a response? Why am I not allowed to have emotions? I made my reports to family and friends, then went to find some lunch in the hospital cafeteria. Unfortunately, they had closed after breakfast to prepare for lunch and since I didn’t see a schedule, I bought some canned tuna salad and potato chips from the vending machine. By the time I had wolfed it down (I hadn’t eaten all morning and was up for 4am)–like ten minutes later–the cafeteria doors opened and people rushed in. But I didn’t want to eat anything else, so I went back to the waiting room to be with my family.

We finally got to see Mom in her room at about 1pm. It’s hard to see your mother lying in a hospital bed. She was clearly still coming out of the anesthesia, shaking and shivering, but she said she wasn’t in any pain, so that was good. My father did okay, but he couldn’t even concentrate enough to read–which is his default mode–or doze. He mostly sat and stared, or we chatted about nothing. Or he went outside and smoked his pipe.

So we hung out for a while with Mom to make sure she was okay. She was on a morphine drip and seemed drowsy and loopy. No surprise, right? I tried to keep talking to her so she didn’t have to talk too much (her throat was sore from the breathing tube and her mouth was dry), and so did my brother and SIL. Slowly, everyone left, but my oldest brother and I stayed so my dad could get some food since he hadn’t eaten since breakfast. When he came back, my brother and I left, hoping that Mom would sleep for a while. After an early dinner, Hub and I went back to the hospital to see Mom and give Dad another break. We stayed for about two hours or so…long enough to distract Mom (Hub is good at that) and let Dad relax for a while.

By the time we got home, I was WIPED. I pretty much stumbled in the house, let the dogs out, then went upstairs to shower. By the time Hub came upstairs at just after 10pm, I was in bed and almost couldn’t keep my eye open. Hub tells me that five minutes after the lights went off, I was asleep. I didn’t wake up once in the night, where normally I’d be up at least once or twice to pee…and more often to turn over in bed. It was tough for me physically all day because my back has been bothering me from some stuff in PT, but I was able to handle it. I’m still in pain today, but it’s still a point that I can handle…I hope I’m not making things worse for myself for the weekend, though, as I want to be able to help when Mom comes home from the hospital.

This morning my father called early to let me know the doctors had been in and were pleased with Mom’s progress. Since then I’ve talked to both of them and heard that she’s had breakfast AND already walked the whole corridor with a nurse. I told you my mother was a strong lady! I’ll be heading back down after lunch sometime to spend the afternoon with her and make sure my dad has time to relax and not be so on “duty” all the time.

I really didn’t feel too much anxiety yesterday. Really, when we were heading to the hospital at 5am in the dark, did I feel some anxiety creeping up. I’m not sure why it happened then, but I was able to deal with it and it went away pretty quickly. At the hospital in the waiting room, I stayed as busy as I could–talking, playing on the iPad, knitting–and didn’t have any major issues except when I heard them call my mother’s surgeon’s name on the intercom when I thought he was supposed to be IN surgery. That seemed weird, but I figured they didn’t realize he was in surgery and I went back to what I was doing. And once I saw my mom, I was more relieved that she made it through the surgery and anesthesia than anything else…so there was no anxiety around. Also, I was so zonked I don’t think I was feeling too much of anything last night.

I’ve got Cray-cray Lab here with me today, since there’s no one home to take care of her. She was with Hub yesterday while he worked from home and took care of all the dogs. Cray-cray has become pretty attached to Mom since she retired and I know she misses Mom. But I talk to her and pet her and make sure she gets good play time outside with Butthead. Right now she’s napping in the sun on one of the dog beds in our family room while I’m writing this blog. Butthead and Le Moo are keeping watching in our library where they can stare out the window to the street out front.

My thankful list overfloweth. Our family has been amazing. The doctors were great. Most of the nurses have been wonderful so far. An old, dear friend of mine texted me the morning of the surgery to tell me she was thinking of me and my mother. And she has repeatedly offered help and support for me, even though we only see each other like once or twice a year on average. My husband has been amazing to me, not even blinking when I asked him if he would drive me back to the hospital last night even though I’d barely been home an hour (and it meant postponing something he had already planned to do that evening). I can’t even list all the things he’s done and is doing for me during this time, just that I am very thankful for him. And I’m thankful for the time I’ve had with T, who has helped me to be in the place I am in now, able to be of support to my parents without the overwhelming anxiety pressing on me.

Thanks to all of you, too, for reading about all this.

 

Tags: , , , , , , , , , , , , , , , , , , , , , ,

Surgery day–almost

By the time this is posted (and you have an opportunity to read it), surgery day will have come and gone for my mom. I will be heading to the hospital with them tomorrow morning at 5am, as she is first in line for surgery with her particular surgeons.

Over the past couple of days, I’m starting to see (or she’s starting to allow me to see) her fear. She isn’t sleeping well, and told me last night when she wakes up, she just gets up and goes to read a book until she is sleepy again. She says laying in bed gives her too much time to think and worry about the surgery. She is a strong woman, practical and pragmatic, filled with faith in G-d. That does not mean she is impenetrable. I saw a bit of this when she was working on her medical directives about two weeks ago. Where prior to this I think she would have made a certain decision, now her directive is different than I had anticipated. We are never so aware of our fragility and the fragility of life as when we are sick and faced with the possibility for a bad outcome (surgery, anesthesia, etc.)

I’m still trying to keep myself grounded, while at the same time preparing what I need to take with me for at least an entire day at the hospital. Like I said, we’ll be there very early, and the doctor said she might not be in her room (where we can finally see her post-surgery) until close to lunchtime. Of course, depending on what happens in surgery and how well she makes it in recovery. Since she has no past experience in the hospital, we have no idea how she will react to the anesthesia and/or any of the pain medications she’ll be on. And, of course, considering her age.

I’m so so so thankful for my husband, who is taking time off of work to make sure all our animals are taken care of while the rest of us are at the hospital. I am so so so thankful that he understands how important it is that I be with my dad while my mother is in surgery. I am thankful for my aunt and uncle, who are going to be with us during the surgery tomorrow, and be with us as we wait for Mom to make it through recovery. I am thankful for my brothers, who will be there in person and/or in spirit as they are able. I am thankful for all the people who are praying for and thinking of my mother as she goes through this. I am thankful for the experience of the surgeons performing the surgery, and for the nurses who will be attending her during and after the surgery. I am thankful for the people who run and take care of the hospital, so that it is there and operational when she needs it. I am thankful there is a higher power that my mother can feel connected to during this time, so that she feels that spirit and that support as she goes through this. I am thankful that she is not alone in this (and that *I* am not alone, as well).

I am thankful for my mind and my body and my spirit, all of which propel me forward every day, and allow me to be with my parents tomorrow (and after). I am even thankful for the aches and pains that I feel every day, because it reminds me that I am here, and that I am living. I am thankful for the fear and the helplessness that I am (and have been) feeling, because it reminds me how much I love the people in my life and how much I cherish the time I have with them.

 

Tags: , , , , , , , , , , , , , , ,

Control and choice

My mom was diagnosed with uterine cancer. She is 73 years old. Her experiences with doctors and tests and surgeries and anesthesiologists and diagnostics are limited. She dealt with some of this with my grandfather when he got cancer, and then some when my grandmother became ill. She dealt with it when I got sick, too. But always as an outsider, as the support system. Now, it’s a first-person experience for her, and she hates it. I can’t blame her, I know how it sucks…to a point, of course. I know the on-going tests, the waiting, the appointments, the waiting, the doctor’s offices, the waiting, the results. The questions, the lack of answers, the run-around. The lack of information.

Mom told my brothers what was going on a couple of hours after she told me, mostly because they all work and she didn’t want to call them while they were at work. I’ve since spoken to one of my brothers, who is really the one who questions everything. The one who challenges everything. The other two have not spoken to me yet, but I’m sure we’ll talk at some point. But the one brother, he’s already asking questions, challenging things, doing research. And I’m not.

I’ve asked my mother questions, but when she answers them I accept what she says. I don’t challenge her, I don’t challenge her doctor. And I am not doing research. I feel like I’m doing something wrong by not doing research. Every hour I try to remind myself that I’m not a doctor and I’m not G-d. I cannot affect the outcome of this situation, I can only try to affect the journey. I can support, I can listen, I can do the laundry and cook dinner, I can grocery shop, I can drive to appointments and/or go with them to appointments. I can pick up medications, I can help clean, I can take care of Cray-cray Lab. I cannot affect the cancer, I cannot affect the surgery, I cannot affect the doctors and how they perform. I can pray, I can hope, I can do the things I can do. I can make the choice to be in the current space with myself (and/or my mother), and not spend that amount of time wondering, researching, worrying, being anxious, feigning control.

I am in the moment. And the moments feel helpless. I feel helpless. The other things I am not doing–the illusion of control–at least made me feel like I was doing something. This not doing, it’s hard. This accepting that I cannot affect change in the cancer, it’s hard. And it hurts to accept that I cannot affect change in the cancer for my mom. This is not to say I am not able to help (see above) in other ways, but I want to do more.

My mother is a woman of faith. A woman of no regrets. A woman of strength. In the good days, in the bad days. It’s easy to have faith, no regrets, and strength in the good days. It is the measure of a person to have that same faith, lack of regret, and strength in the bad days. I choose to follow in her footsteps as best I can. I am awed by her every day.

I choose to be in these moments of helplessness. I choose to be in these moments of fear. I choose to be in these moments of faith. I choose to be in these moments of strength. I choose to be in these moments of no regrets. I choose to be in these moments of love. I choose to be in these moments with my mom. I choose them all now because I may not have these opportunities again.

 

 

Tags: , , , , , , , , , , , , , , ,