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Category Archives: avoidance

Calgon take me away

Preface: This blog is about me and my experience/feelings with regards to medications. It is not a judgement on or valuation of what anyone else does/feels with regards to their anxiety, depression, pain, insomnia, allergies…etc.


Monday morning I went to physical therapy for my shoulder. I’ve been going for close on to six weeks I think, but only once a week because they are so booked they can’t usually fit me in twice a week. This past Monday, I actually cried during the appointment because the pain was a) so bad and b) so frustrating. For the first three weeks or so, I was doing my exercises religiously at home. Then the therapist started adding in more and more exercises–without giving them to me in written or picture form–and I got overwhelmed and lost. I still try to do stuff daily, but it’s not everything I should be doing. Even so, I’m continuing to progress with my flexibility, but the pain continues. And I guess because the therapist is trying to push my range, the pain is…bad.

I am extremely sensitive to medications, and have been for most of my adult life. I don’t even take OTC pain killers like ibuprofin or acetaminophen or tylenol because they either screw up my stomach or they don’t work. I will take anti-biotics when prescribed, but I hate the experience and it’s mentally very challenging for me.

So last night I was in the shower and thinking about how much my shoulder still hurt, how sore it was, and I was under the hot spray of water and thinking…if I only took pain killers this would be a lot easier. And I knew…I KNEW part of the reason I don’t take pain killers or cold medication or antihistamines or sleeping pills or any other medication is that I would cause a bigger issue for myself. It’s NO LIE that I have medication sensitivities…I very much do have them. But maybe if I searched hard enough I could find things that work for me. I don’t do this…and here’s why.

About fifteen years ago I had a bad cold…a sore throat that was horrendously painful. I started using these OTC throat drops that had some kind of liquid medication in the middle. It was probably Haul’s brand, probably cherry flavored. I used them constantly in the beginning and they seemed to help. Then my throat started getting better but I literally got addicted to them and was continuing to suck on them like they were candy. I had to use them. I was addicted and I had to have one in my mouth almost all the time. It was vaguely terrifying when I finally realized what was happening (maybe like 3-4 weeks later). I quit them cold turkey and made Hub take the bag to work with him to throw away. I knew if they were in the trash in my house, I would dig them out and eat them. I don’t buy those kind of lozenges anymore, though in the last two or three years I have started buying honey-drops for sore throats.

I don’t do drugs and I don’t drink any alcohol and I don’t smoke. I never did any of those things. I feel like if I did or if I started using something like pain killers or anti-anxiety medication or sleeping pills, I would be using them constantly and for the wrong reason. I’d be in less pain, I’d probably have less anxiety, I might sleep more, but I’d also be zoned out and not living. I would just figure out the best way to shut myself off from everything and everyone in life by doping myself up on OTC or prescription medication. I would be gone, in every sense of the word. I’m not sure I’ve ever admitted this fear to anyone out loud, but in my heart I know that I’d use the medications to hide away. I’m not sure I’d be doing anything illegal or overdosing on the meds–or even overusing in any significant way–but I’d be using them in a way that would excuse me from life.

I feel like my anxiety over medications keeps me safe from all of this. Yes, I DID use some pain medication after my first surgery, but it was only a day or so (and so regimented!) and then I used tylenol. And then after a day or so I used nothing. The second surgery I didn’t use pain meds because I didn’t like the way they made me feel the first time, so I used tylenol as needed and I suffered through. I suffer through pain on a daily basis because I’m afraid of who I would become if I muted all the pain in my life…physical and mental.

Before I first got sick in 2001 (at 29yo), I’m not sure I ever really needed medications. Sure, I probably took cold meds on and off over the years, and never gave it another thought. Yes I did use Advil every month for cramps (which is how I ended up with stomach issues!) and probably occasionally for headaches. But after I got sick, everything changed, including who I really was. Who I really am.

The physical therapist said that I could go back to my Ortho doctor and ask to get a steroid injection to help with the pain as we continue with rehab, but I declined. I hate the pain I live with daily, and I hate the pain that reduces me to tears during PT, but the pain reminds me that I’m alive. I’m alive and I’m experiencing life.

This all sounds very fucked up. I guess I’m not surprised at that revelation.

 

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Birthdays and grief

My mother’s birthday was a few days before the holidays. As one of my brothers said to me, “I’m sure it’s not creeping up on you, either…” And it wasn’t. T thinks that a lot of my pain and anxiety were around the colonoscopy without my mother being there, and because of my mother’s birthday, and because of the holidays without her.

Yeah, I knew her birthday was coming. I knew it was going to be bad. I also knew I had somewhat of a plan for the day. Before Mom got sick, when she was still crocheting, she hooked up a bunch of preemie hats for our local hospital’s NICU. At the time, it wasn’t a lot of hats, so we kept saying we were holding off before taking them in. After Mom passed, I took all of the small amounts of yarn I had and crocheted more tiny hats. Then I put them all into a bag and left them in my library. Because I knew what I wanted to do.

On Mom’s birthday, I woke up and got dressed. And I called my father to see how he was. He said he was just going to call me because he was going to the cemetery and he wanted to know if I wanted to go. I didn’t really, but I didn’t want him to go alone. So instead of answering him directly, I said if he would take me up to the hospital to drop off the preemie hats, I would go with him to the cemetery. He said okay, so we left about ten minutes later.

At the hospital–where my father’s sister (my aunt) was admitted and stayed for several days, and where my mother went for her lymphedema wraps–I left Dad in the parking lot and I went inside. At the main desk, they checked me in and directed me to the NICU. As I made my way down the hall, I saw someone walk into the elevator, so I hurried to join her so I could save some time waiting for another elevator. Inside, the woman standing across from me smiled, then looked at the bag in my arms and her smile got wider. She asked me if I was bringing hats to the NICU. I said yes, and her eyes seemed to sparkle. She was heading for the NICU herself…she had twin girls who had been born before Thanksgiving–when they were due after Christmas. I said congratulations and I hoped they were doing well, which she said they were. And she told me, “They brought me to see the girls for the first time, and there they were in hand-knitted hats, and it just made my heart skip a beat. That someone out there did that for me and for them, complete strangers!” Her smile was so big.

When the elevator doors opened, I walked with her down the hall and into the NICU waiting area. I wished her luck and she disappeared behind a door that the nurse unlocked for her. I approached the nurse, who was behind a glass windowed reception area, and I put my bag of 40 hats on the counter in between us. And I announced that I was there to drop off crocheted hats for the babies. In all sizes, all colors, all different types of yarns. The nurse smiled and took the bag, then started going through the hats. She oohed and ahhed over some of them, and even rubbed a few on her cheek and said how soft they were. She told me how wonderful if it was to have them, and wanted to know “how many women are there in your group that made these?” I laughed and said it was just my mom and me. The sweet woman said, “oh my goodness, please give your mom a hug for me!”

I basically nodded and smiled, gave a wave, and left the unit for the safety of the hallway. It was hard. I tried not to cry as I made my way back through the hospital and out to the car where my father was waiting. Fortunately, he was busy navigating the parking lot and trying to figure out the best way to get to the cemetery, so our conversation was pretty sparse.

When we were done and I was home, I cried. I cried because those were the last hats I had from her. I cried because I missed her. I cried because I hated where I was in my life without her.

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When my mom was going through chemo, I made her a bunch of hats for her to wear after she lost her hair. Years ago, probably six or seven years, before I was crocheting, she was supposed to crochet me an open-weave sweater to wear over a tank top. She never got to it, for various reasons. I don’t even know what happened to the yarn we picked out. She crocheted me a shawl for my brother’s wedding, and added crocheted sleeves to an evening gown for my cousin’s black-tie wedding. So I really have nothing I can wear that she made for me. I wish I did. The last thing she crocheted was a lap blanket that she was expecting to donate, but a few days after she died, I took it. I wrapped it up in tissue paper and put it into a plastic bag that a set of sheets came in, and I put it away in my guest room. It’s in a drawer in my grandparents’ dresser. It’s ugly as sin color-wise, but I can’t bear to part with it. I also have a ruffled ball that was supposed to be for a baby that was a test-project. It’s on a shelf in my bookcase hidden behind some doors with the perfume that I took from her bathroom drawers a few months after she died.

I honored my  mom as best I could on her birthday. My birthday is coming up soon. Hub usually cooks me a special dinner and he’s been asking me what I want to eat. I kept putting him off, because I honestly do not want to celebrate my birthday. I finally told him I didn’t want anything special on my birthday because I didn’t want to have my birthday. I don’t even want it to be acknowledged, because it’s just another reminder to me that she isn’t here with me. Last year she was in brain radiation on my birthday…she was just getting over the symptoms of the brain mets. We were dealing with the lawyer trying to get my parents’ trusts all finalized and stuff.

Last year, five days before my birthday, I had to call an ambulance at 11pm for Hub because he had an episode of paroxysmal supraventricular tachycardia (PSVT) where his heart rate was sustained up around 225 or 250bpm. They had to stop his heart twice with medication to get it reset. We went to his follow-up appointment with his cardiologist on my birthday.

Right now, I’m in pain. My arms and back and neck and shoulders hurt. I have headaches on an almost daily basis for multiple hours at a time. My hips hurt when I try to sleep. I still have nausea. I still have jaw pain. I still have anxiety over the jaw pain, though it’s not as persistent as it was in the past few weeks. I’m not sleeping much and I’m not crocheting because I hurt too much.

I don’t want to celebrate. Right now I just want the days to be days, so I don’t have to be so sad.

 

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I don’t wanna (stomps foot)

This morning my brother and sister-in-law flew in. Tonight we had dinner at our house, with Hub and I cooking breakfast for dinner. My father came over, one of my brothers who lives locally came over, and the my SIL and brother from out of town. It was kind of a last minute get-together, but that’s fine. I didn’t want to go out to dinner again (Hub and I took Dad out last night), so we volunteered to cook for everyone tonight.

Tomorrow, we go to the cemetery to have a very small and short ceremony to reveal Mom’s headstone.

Everyone left an hour ago and since then, I’ve been feeling…not ready for tomorrow. There’s absolutely nothing I have to do for the ceremony. We’ve already bought and prepared some food for afterward at my parents’ house, and there’s nothing left to do tonight. I don’t even know if the phrase “not ready” is appropriate.

I don’t wanna go tomorrow. I just don’t wanna.

I’ve known for weeks this was coming up. And as this last week has approached, I’ve felt more and more pain in my body. And more and more angry. And more and more upset. And amazingly enough, I’ve been sleeping even less. No matter how I try to fall asleep, or stay asleep, or get comfortable, or turn out the lights early, or try to linger in bed longer…I’m even more tired.

I’ve talked to T about some of this. She gave me some insights on William Worden’s “grief tasks” which are a slightly different theory from the five stages of grief (1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance). The four grief tasks are:
1. Accept the reality of the loss
2. Work through the pain of grief
3. Adjust to an environment in which the deceased is missing
4. Find an enduring connection with the deceased while embarking on a new life

These tasks are supposed to be wrapped up in each other, so that even while you are working one, you are likely working others at the same time.

Right now, all I know is that I don’t want to go tomorrow. I don’t want to be wrapped up in sadness. I want to talk about Mom and about the good parts of her life. I don’t want to stand there and focus on the grief of it all.

No one really wants to talk about her. I want to remember her life, not languish in her sickness and her death. There was so much more to her than her last two  years. So much more to her than cancer. So much more to her than metastases. So much more to her than her death. She had a life! A long and amazing life. A life full of love and travel and learning and joy and … life.

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Tomorrow will come and go. Another day marked off our calendar, another task completed (the installation of the headstone and the “reveal”)…and still she is gone.

I used to write poetry, just like I used to write fiction books. I tried to write a poem for tomorrow but came up empty. The words don’t come anymore. There’s just this emptiness and the fervent wish to express myself somehow. And then the inability to do so.

 

 

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Silent

I have been silent. Sad and silent.

In my head, I have written about five blogs. I compose them, I edit them, I reconsider what I want to say, I think about it some more…and then I don’t actually write them. They might still happen, but they might not.

I have been dealing with more pain recently, which hasn’t improved my daily outlook. My husband had been dealing with work issues. My brother is just starting a (contentious) divorce. My father has been to and from some of his doctors to make sure he doesn’t have any kind of advancing dementia (which he does not, thankfully).

I am the (supposed) steady in the family. Despite my issues, my family still comes to me for support, reassurance, an ear…etc. No matter how I’m feeling, I still seem to be the one they all gravitate toward. Even my few (and far away) friends seem to feel that way.

I feel sad, ya’ll.

I’ve been dreaming about my mom. I had a long dream about her, then I thought I woke up (and I really believe I was awake) and I had a vision of my mom standing next to my bed looking down at me. It was so vivid and so real I could have reached out to touch her. But it was extremely upsetting for me because she was looking sickly, with her post-chemo peach-fuzzy kind of hair, and she said to me, “I’m tired and aching…”

I emailed T that very morning and although she helped me make sense of the dream, the vision still bothers me. I don’t know why she came to me that way, in that manner, and with that particular message. It’s been over a week and I still can’t get past it.

I still hope to write the blogs that need to be written. I want to think that what I’m dealing with is only grief, but I feel like I’m having some mild depression. I don’t want to do much of anything. I do what needs to be done. I fake what that world expects to see. But in the end, I just feel sad.

I know I feel overwhelmed, and so some of that might be the cause for feeling kind of shut down. Hub has been sick, on top of everything else, and my pain has been escalating. So that all makes for harder days and nights, especially since the pain interrupts my ability to get as much sleep as I normally do–which isn’t even that much.

For no reason, some pictures I took one evening last week.

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Motherless Day

I know, it’s dramatic and sad. But it’s also true for me.

I still can’t believe that I wrote (and read) a eulogy for my mother.

I still can’t believe that I can’t walk to my mother’s house to see her.

I still can’t believe that I won’t ever see her again. Or hug her. Or hear her laugh. Or see her smile.

I still can’t believe that I can’t pick up the phone to give her news. Or just say hi. Or ask how she is. Or see if she wants company.

I got invited to a mother’s day barbeque by my aunt–the one who tries to help but does a terrible job. She sent an invitation by email saying she was inviting us, and then told us how hard it was when HER mother died. Then when she called me on the phone (she’s calling weekly–prior to this I generally saw her 3-4 times a year and never spoke on the phone) she asked again if I would join them. Both times I said no thank you.

The barbeque was at her daughter’s house (my cousin). My cousin then sent out an email inviting us to the barbeque. After a lot of tears and ranting to Hub, I sent her an email saying thank you for the invitation, but no thank you. Seriously, it made me feel like they weren’t just pushing the knife in, but twisting it around. My mother died five weeks ago, what makes you think I would want to come to your mother’s day barbeque to celebrate how you have a mother and I don’t? And beyond that, what makes you think that asking me not once, not twice, but THREE TIMES helps me? You’re reminding me repeatedly that I have nothing to celebrate…and you do. Good for you, now leave me alone.

I know, I sound nasty. I felt nasty. I wanted to be left alone. I wanted them to stop bringing it up, stop talking about it, stop REMINDING ME. I wanted mother’s day to go by just like any other Sunday. I wanted it to be OVER.

I sent Hub to his mother’s house to be with her. I stayed home. I had hoped to be alone to pass the time as best as possible. Instead I sort of got corralled into spending several hours with my brother and his wife. We’d been talking about this on and off for several days this week. I didn’t particularly want to entertain them, but I was worried that my brother needed to be with me. He’s feeling like he needs to be with family, so I hated to turn him away. Getting the details together for the evening was difficult, and as it turns out we really only had dinner and hung out for a while. Hub came home and joined us for a an hour or so, then they left. I hope it was helpful for my brother to be with me. I don’t know that it was helpful for me. Either way, it passed the time I guess.

I made a gift for my cousin’s baby–due in a few months–including a baby blanket, matching hat, and a doll. Once I made the doll, I realized it was kind of cute, so I made another for my massage therapist, who is also due in a few months. As I was finishing that one, I decided that I was going to try to make some of these dolls to give to our local police or fire department as comfort dolls they could give to children at accidents or fires or in domestic violence situations.

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The thing is, I really hated sewing the doll together. The hat, head, body, and arms are made separately, then have to be sewed together. So I went back to the pattern I had for the doll and started trying to rework it so I could make it in one piece, minus the arms. The arms I still have to make separately and sew on, but it’s a lot easier than sewing all of it. I redid the pattern and made another doll, but it turned out too big and the proportion was a little off. I worked on the pattern again and finally came up with a good result in basically one piece.

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I’m going to put out a call on facebook, I think, about seeing if anyone else wants to make some of these dolls for local donation, or even if they want to make them for their own community. I’ve never reworked a pattern like this before. I’m not the greatest at this amigurumi stuff, but this is a pretty easy pattern in the end. Sewing the arms on is still a pain, but it’s doable (even though I can’t seem to get them even on both sides!).

The doll has given me something to concentrate on. But oddly enough, I didn’t do any crocheting today. I cleaned up the house a little, did laundry and washed dishes and put dishes away. And I binge watched Grace and Frankie on Netflix. Now I’m trying to wind down the day and get myself together to see T tomorrow.

I’m tired. Weary. Even though I saw my massage therapist on Friday (and also BECAUSE I saw her), my body hurts. My heart hurts. My soul hurts.

Hub told me last night how much he misses my mother. I cried and he apologized for upsetting me. I told him that I wanted him to tell me, that he shouldn’t keep it to himself. He’s a good man. I’m very lucky. He loved my mother like she was his own. She loved him like he was her child. How often does that happen? I have good people in my life–those gone and those still with me. I guess that’s something to celebrate.

 

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Too much or too little?

I had a session with T today, which was kind of all over the map. Part of what I wanted to talk to her about was V (pt 1 and p2). I haven’t written much about my sessions with V because I haven’t felt like we’ve done what I wanted to do. Very specifically, I approached and began seeing V so that I could attempt to do hypnosis with a therapist who specialized in it, versus seeing a hypnotist who had no therapeutic training. I was looking to get assistance with my insomnia type symptoms (I say “insomnia-type” because I don’t feel I have true insomnia, I just have shitty sleep), which was something V said initially she could help me with. In the end, she preferred not to use “hypnosis” and instead went with “breathing and relaxation” techniques to work with me. As well as EMDR.

I’ve had seven or eight sessions with V, and while I did discover where my “not enough” feeling came from, I haven’t had any progress with my sleeping. And I haven’t felt any other progress, nor has V seemed interested in pursuing hypnosis. I also feel very uncomfortable that at least once a session, she’ll say she’s not sure if X will work, or that she also struggles with sleep but I shouldn’t be concerned it will always be that way for me. I just feel like I’m talking to a therapeutically trained ME. And I don’t want to talk to me… It sounds weird, but that’s how I feel. So I pretty much had decided to discontinue sessions with V, but I’ve never…fired a therapist before. I didn’t want to make V feel badly because I didn’t want to continue. I know it isn’t my issue and she is a professional, but honestly she feels so insecure to me that I hate to feed that feeling by firing her. But I’m not getting what I want from her and I don’t want to continue if that’s the case. I already have T–who works well for my on-going needs–I don’t need another regular therapist.

So when I sat down after dinner, I crafted a short but complimentary email, and after re-reading it a couple of times, I sent it. Now I wait to hear back. Unh.

My plan, at this point, is to give acupuncture a go. I’ve had it before and although it didn’t help at that point (for horrendous menstrual cramps about 16 years ago), I know it does work for a lot of things for a lot of people. I just need to work appointments into my schedule, because I know acupuncture is an on-going treatment that often works better with multiple appointments per week, or at least one every week for a lot of weeks. But I definitely want to give it a try, for the fatigue/insomnia as well as chronic pain. T approved of the plan I had set out, and reminded me that I need to keep myself balanced or I was liable to break down.

That was the other conversation I had with her. I wanted to really find out how I know if I’m just avoiding everything by trying to stay busy and/or zen/zone out. I know in my heart that I’m feeling the emotions relating to my mother’s illness and the situation we are in. But I am concerned that maybe I’m not giving my emotions ENOUGH attention. How do I know? How do I know that I’m not mis-using my coping skills for avoidance purposes? She said there’s no answer that suits everyone. To try to pay attention to whether I’m avoiding things that need to be done or dealt with by using my coping skills, or if I’m still addressing things while fitting my coping skills into my life. And that if I spend more time coping/avoiding some hours/days/weeks, that I shouldn’t be too concerned.

I’m not well known for allowing myself to be emotional, so I worry about me avoiding or repressing the emotions surrounding what is happening daily. I just can’t decide what feels right and balanced. T tells me to quit worrying about it. Seriously, has she met me? 🙂

 

 

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Shave and a haircut…

…two bits.

Mom finished her radiation treatments today. The nurses at the radiation center are beyond amazing women. I can’t tell you how phenomenal it is that these women go in to work every day and help people who are battling life-threatening diseases. How they go in every day, knowing that they’re seeing people who are so sick…who might not make it in for the next treatment. Some who can’t get out of chairs because they are so weak and frail. And yet these nurses smile and hug and encourage…and they love.

This was the second round of radiation for Mom. The first was pelvic radiation, this time it was brain radiation. When Mom came back in for this second round–the first was last summer–the nurses recognized her. They hugged her. They carried her puke bucket for her. They showed her pictures of their lives–weddings, children–and they remembered that she crocheted special hats for them. They greeted me and they greeted Dad like we were friends.

So Mom rang the bell at the radiation center for a second time. The nurses gave her a certificate–that they each signed after they wrote very sweet things–as well as a cover for her puke bucket that re-assigned as her “crochet bucket”. I took pictures of Mom ringing the bell, but it was harder to feel excitement. This was the second time she’s rung the bell for treatment completion at the radiation center. Adding in the chemo center, she’s rung a bell three times…and yet I know that the cancer is continuing to grow. There’s no question in my mind. This cancer is so aggressive, there’s not going to be any stopping it.

I smiled and cheered Mom on as she rang the bell. Afterward, we went out for lunch with Hub and my oldest brother, and my other brother and his wife surprised Mom by showing up as well. After we all stuffed our faces, I went back to my parents’ house with them to get Mom settled. We talked about cutting her hair as we drove back to the house because the radiation was causing Mom to lose her hair again (due to the location of the radiation beams). She had pulled out some clumps already and we’ve seen her shedding hair at home. It was clear she was irritated, so I offered to cut her hair really short. She usually wears her hair short-ish, but I’d say it was about 4″ long at the longest area. I started cutting and then my brother brought down his hair clippers, so I proceeded to shave her hair (with a guard) really carefully so I didn’t irritate her scalp. I left her with about half an inch of hair. Enough to keep her head from freezing, but not long enough to irritate her when it continued falling out. She thanked me and then we got her settled onto the couch so she could rest. Dad and I cleaned up the hair from the floor, then we ordered pizza and calzones and strombolis from the local pizza place. Mom wanted the food for the weekend (she had a hankering for it), in case the restaurant wouldn’t be open after the snow. I rubbed Mom’s fuzzy head, kissed her cheek, and I came home.

I never expected to have that memory with me. I’m glad I was able to help her feel more comfortable by shaving her hair, but I don’t know how to cut hair. I do a terrible job trimming the dogs–even though I do it when it’s needed so they don’t have to sit in a cage at the groomers waiting to get trimmed–so I wasn’t looking forward to cutting Mom’s hair. I did it because she needed it, but I hated doing it. I hated that it needed to be done. I hated it.

I walked home in the lightly falling snow. We’re expecting an actual “official” blizzard here (it’s going to meet real criteria for a blizzard, they’re not just saying it’s a blizzard…who knew?). 20-30″ of snow when all is said and done. It was that eerie quiet outside as I walked home. I let my mind stay blank and felt the snow touch my face, wet my hair, linger on the scarf I was wearing that my grandmother crocheted for me a million years ago. Inside my house, I took off my coat and hung it on the back of chair, then went to throw something away in the trashcan in our mudroom. The can has this latch thingy that requires you push the lid down to latch and unlatch. I pushed it to unlatch it, threw out the paper in my hand, then pushed it to latch it again. Only there was a towel on top of it (that we use to dry the dogs from the snow) that got caught under the lid. So I yanked on the towel while simultaneously trying to push the lid down to release the latch again. It didn’t work, and I swear I stood there and pounded my fist on the lid repeatedly as I yanked on the towel. BANG BANG BANG BANG. Hard. Loud enough that Hub stuck his head in the doorway to see what was going on. I finally got the lid to pop open, pulled the towel out and closed the lid again. I shrugged at Hub and said, “Guess I had some rage to get out.”

Poor guy did the right thing and scurried away without comment.

Last night when Mom texted me (she’s getting into this texting thing now that she has a stylus…she’s texting her grandkids and my non-local brother) “Alarm! Hair is falling out! Just thought you’d want to know.” she also told me she was eating some store-bought ice cream leftover from a recent visit from my nieces. So after the rage incident, I mixed up her favorite ice cream–chocolate peanut butter–and dumped it into the ice cream machine to churn. When it was done, I put it into a blue freezer container, then called Mom to say I was coming over and I was bringing the snow with me. She said, “Only if it’s chocolate covered snow.” The steroids have really cranked up her appetite for everything, including her beloved chocolate. She’s eating a lot of food now, and we make it into a joke…that no one should stand still too long in her house or they might get chewed on. So I suited up in my coat and scarf, and walked back to her house to deliver the freshly made ice cream. Again, the quietness of the snow, the gentle touch of the icy flakes, it was all so serene and so…engulfing is the only word I can come up with. I’m not sure how it really made me feel, it just was so noticeable.

I showed Mom the container of ice cream and promised that by her snack time later that evening it would be firm enough to eat, then I stuffed it into her freezer. She told me she talked to her good friend on the phone, she talked to my brother who lives in another state, and she thanked me again for cutting her hair. I told her I loved her. I told her to text me later to say good night. And I was outside for the walk home. Crunch crunch crunch. The snow was sticking the ground by now–maybe two or three inches-and I tried to duck-walk my way back home, following my footsteps only now I was leaving prints that were backward to the original. I know it sounds confusing, but at the time it seemed important to make those marks in the snow in just the right way.

When I got home, I realized how tired I was. I realized how much my body hurt. I cleaned up the stuff from the ice cream machine (it cleans easier if you do it right away) and got myself a big glass of water. I sat down and nearly couldn’t get back up when it was time for dinner.

If it really does snow as much as they say, I won’t be able to get over to Mom’s tomorrow. That’s why I ran back over tonight with the ice cream, so she had it for the weekend. If it really does snow as much as they say, I’ll have nothing to concentrate on. Mom’s doing well enough that they don’t need me over there if Dad and my brother are there (my brother lives with them). I don’t have to worry about figuring out how to get over there in 2+ feet of snow. I can stay home and do my best not to think.

Maybe I’ll be able to get outside with the dogs. I might not be able to get off the deck as my knees are really unhappy and walking through the snow in the back yard would be too painful. But maybe I’ll get some pictures. Maybe I’ll see the dogs romp. Maybe I’ll be okay.

 

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The bad news continues

It has been too long. I know it. I’m struggling hard on this roller coaster. I spent today’s session with T crying.

Mom just hasn’t recovered from being in the wheelchair…from the pelvic fracture and the deep muscle spasm. For a few weeks she was moving around better, walking more but still sitting to take breaks. But she was still pressing on, doing what she could. We tried a new medication, but it gave her problems with her fingers and toes. Numbness and tingling. That started with her first chemo, but the recent medication made it worse. The doctor stopped the medication because it was a high likelihood that the numbness and tingling would progress to painful neuropathy.

The nurses at the oncology center noticed that both Mom’s legs were swelling. It was decided that she lymphedema–swelling from water and “stuff” that wasn’t being filtered from her body by her damaged lymph system–and that she needed to go to physical therapy to get manual massage and compression wraps to help move the water up her body to parts of her lymph system that was working. That took some time to get set up, but we finally got it scheduled to start after Christmas.

We were expecting to go to a local research hospital to see if they had a trial, but with the holidays coming their response was a bit slow. Then they said they had no room for her in the trial until the end of January, so we decided to pursue the next option with her regular oncologist. Only…something happened and we’re not sure what.

Christmas day she wasn’t feeling so great. Then the weekend, she continued to feel “yucky.” She was starting to feel lethargic, tired, not really interested in eating. But she was forcing herself to eat to keep her energy up. The Monday following she was due to go to the physical therapist for the lymphedema evaluation. When I went to meet them at their house, I could see she wasn’t feeling well. She was exhausted and hardly interested in moving. She was using the wheelchair again. But she persisted and made it to the appointment. The physical therapist did the evaluation but only wrapped one of her legs, so as not to tax her body too much. We made it home and just inside the house, Mom threw up. And that’s where the downhill slide really began. We had another appointment the next day to go back to the physical therapist, but just minutes inside the offices, I had to race her wheelchair into the restroom so she could throw up again. I could see she was getting more dehydrated and weak, but she wanted to go through with the second appointment. They wrapped her again and instead of leaving it on for six or seven hours like the day before, this time she was supposed to leave the wrap on for two days. We got Mom home and she just kind of collapsed into her recliner.

The next morning my father called to say she wouldn’t get out of bed. She was too exhausted and weak. They’d spent the night getting up every ninety minutes to get her into the bathroom to pee…a result of her leg being wrapped and the fluid being expelled from her system. We called the physical therapist who told us to immediately remove the wraps and consider going to the ER for dehydration. We ended up taking her to the urgent care for her HMO (where she threw up again in the car), where they kind of pushed us around. She wasn’t really dehydrated, but her blood work said she was malnourished (from throwing up and not eating for fear of throwing up). It also came back with an elevated liver enzyme called Bilirubin. They did an ultrasound of her liver then basically said they saw nothing “remarkable” and sent her home.

The next day was New Years eve day. She wouldn’t get out of bed. She didn’t want to eat. She didn’t want to drink. She barely sat up. She didn’t open her eyes. We called the oncologist’s office but he was out for the day and the on-call oncologist only said to put her on the BRAT (bananas, rice, applesauce, toast) diet and keep hydrating. If it got critical, to go back to the urgent care again. So we pushed Mom to eat. We got her anti-nausea medication (different from the stuff the urgent care gave her because that didn’t work) and antacid for what we thought might be acid reflux. We encouraged her to get out of bed. To try to eat. To keep her eyes open. She would do so for a little bit, then revert back into sitting slumped in her recliner in her robe, eyes closed. No energy, just looking like she was suffering from so much discomfort and distress.

I’ve been spending as much time at their house as possible, trying to keep her going, trying to give my dad and brother a break. Finding foods for her to try to eat, distracting her, encouraging her. She’s tired, I can see it. She doesn’t want to feel this way. It’s not pain, but she feels like she wants to throw up every time she moves. It was a very long weekend. I spent much of my days there, leaving my husband at home with the dogs.

This morning we took her to her oncologist’s office to get her port flushed (it was put in when she was first going for chemo and they left it in just in case she needed to use it again). While we were in the waiting room, I was trying to chat with her, but she just waved her hand and said, “I’m not talking.” So I stopped. When we got into the exam room, we saw the oncologist and I asked him to come speak with us if he could. When he saw mom in the chair, head resting on her hand, eyes closed, he nodded.

A few minutes later, he came in to ask what was happening, and we filled him in. His first step was to get repeat blood work, especially for the high liver enzyme from the urgent care visit–a liver issue could cause the nausea. Then he ordered an MRI for her brain to see if there was spread of the cancer, which could also possibly explain the nausea. Tomorrow is the MRI. If the liver enzyme is still elevated, he’ll want a CT to see if the cancer has grown in her liver, causing a blockage or possibly shut down.

I helped my parents get settled in at home after the appointment, where my mother threw up shortly thereafter. They’ve got her going on steroids to help the nausea and stimulate appetite, and zantac for the acid reflux. After I confirmed the medications with my dad, and their schedule, I left to go see T because that appointment was previously scheduled. I made the drive there, got through the front desk check-in and the wait to get into T’s office. By the time she walked in from her bathroom break between clients, I was already crying. And I cried through the whole appointment. I’m not ready for this…whatever it is. I’m not ready to see her suffer like this. I’m not ready to see her go downhill. I hope this is a blip, something weird, and she’ll perk back up again. I hope. Goddammit I hope. I want to hope.

My brother (who lives with my parents) and I are trying to handle her business. Bills, insurance issues, investment issues, a few business issues. I’m trying to help handle the medical appointments, like canceling the upcoming physical therapy appointment that she can’t get to tomorrow. I’m afraid I can’t keep up with everything.

Butthead started limping again last week, for no reason. We put her on pain medication, but it doesn’t seem to be doing much. We’re supposed to leave her on it for 7 days, which would be tomorrow. I can’t even take her to my parents’ house when I go over because she’ll want to play with their dog and that could cause problems with Butthead’s already bad recovery. So I’m pulled in the different directions. My husband, my parents, the dogs. And I feel guilty for thinking about the dogs when my mother is suffering and struggling.

My husband understands. He has told me multiple times over the last week that he understand that I need to be with my mom and help them. That doesn’t mean it isn’t on my mind that I’ve been leaving him to fend for himself day after day. He’s leaving work at lunch to come home and take care of the dogs while I’m running around with my parents and my own appointments. The dogs are getting left home alone more and more as I’m running in and out to my parents and all the appointments. I’m constantly sending out emails to update my uncle and brother. I’m constantly answering their questions via email. I’m responding to queries from relatives. I’m taking notes at the doctor’s.

It’s not that I resent any of this. I don’t. I just feel pulled. I feel strained. And this is only the beginning of the terrible journey. And I know I won’t be able to keep this pace up for any length of time. I don’t know when to find help. If this is some kind of virus or something “minor” and not the cancer, then I don’t want to rush out to find help/caregivers for my mom. If it IS time to find assistance, I’m not even sure where to start.

I’m both exhausted and frozen. I’m both terrified and overwhelmed. I keep trying to push away the emotions to stay on task, with T’s voice in my head telling me to take time to feel the emotions. To let them come, to nurture them and let the “child” feel the pain of this situation. I told her I’m afraid if I do that, I won’t be able to pull it back together to do the things that need to be done.

It’s too much. It’s so much.

I keep trying to stay in the moment. I can’t control what is happening. Every plan I make will be blown away by whatever is coming next. Why waste my time planning?

My own six month post-cancer diagnosis checkup is in two weeks. I can’t even…there’s no room for it in my head. I also have an abnormal blood work follow-up for high calcium in February. I’m also seeing second therapist specializing in EMDR and hypnotherapy, to try to work on some other issues. That’s another post.

I’m sorry, after all that babble and blather, I feel I’m leaving this post incomplete. A long sentence without a period. I just have nothing.

 

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I haven’t posted

mostly because I wasn’t sure I was ready to really share. Sometimes I need time to process before I know what to say. Often when I’m in session with T, she’ll say things and I’ll just sit there for a minute before I say, “Oh-kay” even. And then I’ll need to take home what she’s said and really process it.

I’ve been processing the hell out of some stuff.

We went to see my mother’s new radiation oncologist, who was not upbeat about the situation. He, in fact, was very gloom and doom about my mother’s prognosis. She hadn’t had her PET scan yet, but he seemed to indicate that they weren’t likely to be able to “cure” my mother. We spoke with him for about 45 minutes, maybe an hour, and he tried to explain what was going on. The phrase that still eats at me is, “Chance of cure is not high.” It took me a while to think on the fact that just because she can’t be “cured” doesn’t mean she can’t live WITH the cancer. But at that point, we still had no results of the PET scan, so we had no decisions to make. She has since had her PET scan, but the radiation oncologist did not call her to talk to her about his suggested path as he was supposed to. She ended up calling his office three days after the test, talked to the receptionist and left a message (the receptionist said, “oh, it’s always good that the patient calls to remind the doctor he was supposed to call” and she was SERIOUS not snarky!) but didn’t get a call back. So she called her chemo oncologist and left a voice mail and HE called back right away. He said he was going to call the other doctor first thing this morning to talk to him. Then he sent her the written report. But reading those damn things is…hard. So we still have no set path, and at this point Mom has decided she wants a second opinion, no matter what.

The appointment was hard. The doctor put his hand on my shoulder as we were walking out of his office and said, “I’m sorry to give you such bad news.” It made my heart skip a beat. It’s like you aren’t sure what is exactly being said, but when a doctor says that to you point blank, you really get it. On the way home in the car, we were only mildly discussing the appointment, but also trying to talk about other things. I knew my mother was upset–this whole episode has been much worse than the original diagnosis, the hysterectomy, the chemo–so I was trying to do something to help her. I finally wrote on my notepad (I always take notes for her during appointments), “Today you are okay.” I ripped the page off and handed it to her, and I told her to just keep it in her pocket. Every time I see her she shows me that she has it with her. The truth is, today she IS okay. The recurring spots are small and localized (at least from the CAT scan that found them), and she’s not having symptoms. (The unfortunate part is that they are concerned it has made its way into her lymph system…and also that it recurred so quickly after chemo ended.) So my brother and my uncles (her brothers) are all researching and inundating her with information, but I’ve been staying out of it. I’ve been doing what I can do, which is talking about other things with her. Doing other things. Planning other things. When she brings something up about the cancer or the research, I talk with her. But otherwise, I don’t bring it up. She has enough of that from everyone else.

The same day my mom was getting her PET scan, I was in with the gyno CRNP talking about MY fantastic upcoming procedure. Apparently the next step for me is something called a hysteroscopy. Where they put you in stirrups and shove a camera and a tube past your cervix into your uterus–which they fill up like a water balloon with some liquid–and poke around. They also take “material” for biopsy to see what’s going on. This is done in their women’s procedure center, attached to their office, which fortunately is attached to a hospital. So I get to be awake, but I’ll be having all kinds of medication. Now I’ve had a biopsy before, but no camera. This is supposed to take a little longer and likely be more uncomfortable than just a biopsy because the camera is larger and there’s more that needs to be done. In preparation for this fantastic voyage, I get to start my week by taking 800mg ibuprofen today, 2x a day, for two days. That’s today, by the way, and I’m home alone. So I have no Hub to be my safety person as I take my pills. I know it sounds weird because we’re talking about ibuprofen, but I haven’t taken ibuprofen in 15 years. I take nothing, other than the occasional antibiotics and only recently that stupid progesterone. I don’t even take tylenol or aspirin. So I get to take that ibuprofen with lunch, then again with dinner. Then 2x tomorrow, as well. AND I get to take something weird tomorrow night to “soften” my cervix in preparation for the camera. And then morning of the procedure, I get more ibuprofen AND a beta-blocker (which the doctor says is FINE with my PVCs) in preparation for counter-acting the epinephrine I’ll be getting directly into my cervix during the procedure (which causes people to be “jittery” and anxious!). I’m so unhappy about all these medications, I can’t even explain. I’ve been blocking this whole thing out until this morning so I wouldn’t have to think about it. I asked if they were going to be monitoring me, and the CNRP said they’d do my blood pressure ahead of the procedure, but during they basically just visually monitor me…and depend on ME to tell them if something is wrong. I wanted to laugh and cry, because those of you who are anxiety sufferers KNOW that we don’t interpret things–like pain, breathing, heart rate–properly when we’re anxious. Now the doctor DID prescribe me a couple of ativan pills in case I needed (or wanted) to take it the night before or morning of the procedure. I’ve had ativan ONCE in the hospital ER when they were putting me into the MRI. I don’t remember much about it, but I’m worried if I take the ativan (0.5mg) the morning of, I won’t be alert enough to tell them if something is wrong. I’m open to opinions on that from those of you who have experience with ativan.

I’m also concerned about being in that kind of horrible position for an extended period of time, due to my muscle issues. The CRNP keeps telling me that recovery shouldn’t be bad–lots of women go back to work the next day, some even go “shopping” the same day she told me–but I have muscle pain after going to an annual exam because of having to keep my legs open without any kind of support. So the CRNP offered me “candy cane” stirrups, which I found out later will sort of hang my feet in the air rather than me putting them into stirrups and having to keep them balanced. No idea if the candy cane stirrups will be better.

On top of all of that, I am trying to ignore the potential result of the biopsies they might get. This part has been really really hard, because it scares me the most.

I’m feeling overwhelmed between what’s happening with me and what’s happening with my mom. The potential scheduling of my procedure caused me so much stress because I KNOW it’s going to take me a couple of days to recover, and I was worried that my mother was going to have an appointment during the time I was unable to get around to go with her. I tried to work things out, but we had no idea what timing was going to be with her scan and her results and etc. As it turns out, because she’s considering a second opinion, I should be okay by then to go with her. And if not, my uncle (her brother) has really stepped in to attend appointments…he has some medical background, so he understands things differently than we do.

So just the length alone of this post should indicate my mental state, eh? If you’ve read all of it, thank you. If not, no worries. I just needed to be able to vent AND put this all done for posterity.

(and for record’s sake, my PVCs have been milder and less often in the past two or three days. I have no idea why.)

 

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Spread ’em

Seriously, I spent time thinking about what to title this blog. And I spent even more time trying to decide how much ERCK I could get specific about. So I went “haha” with the title and am going to be polite in the blog.

I have my appointment with the new gynecologist tomorrow (this post will be scheduled, so I will likely be completely done with the appointment by the time it publishes). I’m not looking forward to it. I’ve had crappy experiences with gynecologists in the past. Fortunately, not crappy like most women have to deal with…but I’ve gone through multiple doctors as we moved houses and my cycle went cray-cray. I’ve been through many sides of the cycle experience, and I’ve been on and off pills to try to get things regulated. At some point, I just gave up and pretty much went with the flow. No pun intended. I have been told my weight has screwed up my cycle, but after losing a lot of weight it changed nothing. I was told I have fibroids (years ago) that shouldn’t bother me. Then I was told I have a thick uterine lining. Then I was told I had fibroids that were big (without symptoms) and that I should have a hysterectomy immediately. That doctor (who always acted so arrogant) freaked me out, and I ended up running off to a very highly regarded oncologist, who told me it was entirely appropriate to “wait and see”, especially since I wasn’t having symptoms (or problems). That was over two years ago. And since then, I’ve gone through the uterine cancer with my mother. I have no idea if there is a heredity component to uterine cancer (I’ve not googled it AT ALL), but when I was talking to T about it, she asked if I knew there was, what would I do? And I said I would pay much better attention to my gynecological health. So she told  me that I should consider following that path. So I’m trying…

I have the three lab reports from my three internal ultrasounds (aren’t THOSE just party-time fun?) so I can show it to the nurse practitioner I’m seeing tomorrow. (I would have had to wait another month see the doctor, and T told me the NP was actually much nicer.) I would assume she’s going to do an internal exam, probably a breast exam, and then we’ll jabber about my cycle issues and the fibroids. She’ll probably give me a referral for a mammogram (I’m past THAT AGE), and maybe I’ll end up with another internal ultrasound. I’ve put off worrying about this appointment until today. I’ve been trying to distract myself all day, and until the last couple of hours, it has worked. Now I’m thinking about it…and worrying over what’s going to come of it.

I have absolutely no need for my female organs. I’m not planning to have kids. I’m not attached to them emotionally. I’d probably be happier without them because they do cause me aggravation just thinking about the issues involved. I am also terrified of having surgery, with all that it entails. I do not have experience personally with surgery. I’ve been under anesthesia for a endoscopy…”twilight” they told me. I did not enjoy it. I woke up as they were pulling the tube from my throat and it was frightening and uncomfortable. Going “under” was also frightening and uncomfortable (although I had an awesome nurse who talked to me for as long as I could remember while I was going under). Clearly I survived the ordeal, and I would guess I’d be okay after a hysterectomy. My mother did really well with hers. 90% of the women I know personally have had the surgery and they all made it through. I always feel like I’m “special” and that if there is going to be a problem, then I’m going to have it. It seems to be a pattern for me. T tells me I’m not special in this manner. I disagree. We argue. It never resolves.

It’s time for me to close down for the night. Tomorrow is a new day. The appointment is late in the afternoon, so I get plenty of time to think about it again tomorrow. Cross your legs…errr, fingers for me.

eta:
It’s the day of and I’m nervous. Sitting around all day sucks. I slept really horribly last night, was up early, and my stomach has been unhappy all morning. Part of why I don’t like going to doctors is the anxiety of waiting for the appointment. The unknown…what’s going to happen, what’s going to be said, what’s going to be diagnosed. What bad thing is going to happen or be found. So anxious, ya’ll. Hub is at work so I’m here alone. He’s coming home to take me to the appointment, and I’m definitely going to tell the CRNP that I have an anxiety disorder. I hope she’ll be sympathetic and gentle in speaking with me. I really don’t like feeling this way. I want to distract myself, but it’s not really happening. Urg.

 

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