Pain Clinic and Cardiology Check Up – Good News!

On November 22nd, I had an appointment with the Spine Pain Clinic at the hospital and my 4-month cardiology check up with my oncology cardiologist.

The spine doctor I saw talked about my back pain flares:
-how it feels (achy and burning),
-where I feel pain (T6 vertebrae where I had cement put in with burning that extends into my ribs, like wings),
-what works to ease it (ibuprofen which upsets my stomach, including the new 24-hour one, oxycodone in small doses, daily Cymbalta, lying down, listening to a meditation),
-what makes it worse (sitting or standing for long periods, activity),
-what doesn’t work (Tylenol, sometimes oxycodone).

I told him that I feel like a lot of my pain results from a lack of strength. Activities that require me to support myself and my back make it hurt the most. I’ve gotten stronger since surgery and feel more stable, and I have more progress to make in order to gain strength to keep up with daily activities, like cooking dinner and sitting at work. I’ve also learned to let my chair at work support me fully by sitting all the way back in it. If I spend too much time leaning forward, it’s a recipe for tired muscles and pain, then a smidge of painkiller to get through the rest of the day.

He recommended a spinal nerve block in my back and physical therapy. I have reservations about the spinal nerve block. Most days, I feel like I don’t need it. Other days, like Thanksgiving morning, I wake up and wish I had it right then! We had gone tubing the day before, which was really fun and didn’t bother my back while doing it. I was so happy that I could do it and felt like it was harder on my leg than anything. It always catches up with me later. With all of the cooking to do on Thanksgiving, I stayed on small doses of painkiller most of the day. I’ve also learned that when I stay on top of the pain or nip it first thing, I do a lot better for the rest of the day.

Anyway, a nerve block seems like maybe too much, too extreme. The doctor had trained with one of the top oncological spine doctors in the country. He said that he would have recommended this route in cases like mine. The optimist in me wants to try the physical therapy first. Maybe mix in some acupuncture. I just feel like I keep having procedures done without knowing if it will help or harm me more. Did kyphoplasty help me? Yes and no. I don’t worry about my vertebrae collapsing. On the flip side, recovering has been awful when the procedure’s intent is to bring near-immediate and lasting pain relief. Okay, so I’m a one-off on that. I’ll get there. It’s definitely gotten better. I can do so much more now than I could in August! I know physical therapy will hurt at first. That’s where the nerve block could help and allow me to heal faster.

After this appointment, I had to get some coffee! It had started snowing a lot in the middle of the night, so I didn’t have time to make myself a latte that morning. It took an hour and a half to get to the hospital in the nasty weather. The hospital serves Dazbog, a local roaster, and hooked me up with some foamy goodness before I went to the Cardiac department for my echocardiogram.

I saw a different technician this time. She brought me a warm gown. I didn’t know they existed. I will get one from now on when I visit on cold days. The echo went well and didn’t take too long (always a good sign). It’s an ultrasound of the heart and leaves lots of lubricating jelly to wipe off after the exam and wipe and wipe and wipe.

I got done so quickly that I had time to run down to the cafeteria for pancakes. I love the hospital’s pancakes. I know it’s weird. I got the last one! To up the protein in my meal, I also got a Greek yogurt. I still had over an hour before my appointment with the oncology cardiologist. I went and sat in the very full waiting room at the cancer center. To drown out the noise of a room at full capacity, I listened to a Freakonomics podcast. So grateful that I had remembered my earbuds that day! I had forgotten them the week prior when I had my oncology check up.

I saw my cardiologist right on time. She reported that my Echo looked good. It looked so good that she was going to give me a longer leash and have me come back in six months, not four. EEEEeeeee! We talked about chest pain that comes and goes and how it’s improved with time, as well as, arrhythmia. She asked me about leg swelling and if that had gotten better. It had. My feet still swell when I’m on them, nothing abnormal. I have no excess fluid around my heart, or pericardial effusion. 😀

My next oncology appointment is on Friday, December 13th. It’s scan day, so it will be a long one. Brain MRI first to check on the tumors there that had shrunk to itty bitty in September. CT scans of my chest and abdomen follow. I’m not expecting anything drastic. I’m hoping to see that my main lung tumor has decreased a little more and my bones have made more progress regenerating. My long shot is to see less cancer in my bones. Like I said, it’s a long shot. Regrowing and healing bones takes a lot of time and bone shots and calcium supplements. Haha. Getting cancer out of them? Even harder. I will be happy with whatever progress is reported.

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7-month Check up Nov 15th

I had my 7-month check up on Friday, November 15th. My appointments that day were efficiently scheduled. Labs at 7:50. Palliative Care at 8. Doctor visit at 9. Bone shot at 10:40.

I looked forward to my palliative care visit the most. The last month had been tough emotionally for me. I found it confusing to have reached normal blood levels, to celebrate that, and at the same time to grieve the unfairness of cancer, mostly for my son. My nurse and the social worker who facilitated the appointment that day said that because I am feeling so much better and have normal blood levels, I finally have the space to deal with some of the emotions that go along with my condition because I’m not in survival mode anymore. I feel like I’ve been in survival mode for a long time, not just from cancer.

My palliative care team also helps me with pain management. My back still flares up a few days a week from surgery. Also, ibuprofen had started to upset my stomach, and I take it every day to manage pain. Everything had started to upset my stomach. Waffles, greens, sandwiches, nothing was safe, and all induced a run for the bathroom. Earlier that week, I had uttered the words, “I never want to eat a salad again.” I’m not a huge fan of salad. I know I need to eat greens. It seemed like everything would set off my stomach, and the semi-processed greens were gross.

My nurse prescribed me a different ibuprofen that would work for 24 hours and break down in my intestine rather than stomach and hopefully help with pain and stomach issues. She also prescribed Cymbalta to treat nerve pain (and depression). It takes a couple of weeks for the Cymbalta to work. I swear it’s already helping though! I’ve been taking both these medicines for a week and have had no bathroom issues! That’s a win!

I saw the oncology doctor after palliative care. She reviewed my labs and reported normal blood levels again!!! I couldn’t believe it. My cancer antigen marker stayed at 1.9. Just like a normal person! I had an appointment with the pain clinic scheduled for Friday, November 22nd. I asked her if I needed to go, since my back had been doing better. She said they’re hard to get in to and to do it. I’m glad I did, since my pain changes from day to day. I also asked about getting my nails done. A few of us gals from work had an appointment later that afternoon for mani-pedis, and I was really looking forward to it. She gave me the green light! Woohoo!

My bone shot was my bone shot. The infusion center got me in a little early for it. I discovered that the lounge chairs go all the way back. I’m usually waiting for a bit, so I thought I’d try to nap. The nurse showed up with my shot two minutes later, so no nap for me! After that, I had to go to work until it was manicure time.

The gals and I enjoyed our mani-pedis. We looked at each other during the pedicures with happy faces and we all agreed that we needed some relaxing, self-care time. I have promised my husband that I will take him with me next time I go for a pedicure. I think he’d enjoy it.

COMMENTS

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Six Month Check Up :D

I had my 6-month check up on Friday, October 18th. I expected to be in and out that day, and I was! The school district near the hospital was on Fall Break, and I think that helped. Very few people were in the waiting room of the Cancer Center. It looked like only 4 doctors were on staff that day. Everything ran early.

I left work an hour before my Noon appointment. Not much traffic. I got to the center early. The medical assistants called my name 10 minutes before my scheduled lab time for blood work. I went and ate lunch in the cafeteria which was fullll of people. I got back to the center about 15 minutes before my appointment time, and they called my name almost immediately!

The appointment went well. My blood levels came back like a normal person’s! DID YOU HEAR THAT? Like a normal person’s! I almost cried. I didn’t really have anything to discuss with my doc, other than the podiatrist thinks my foot pain is related to my back, and my back still hurts, and no, I haven’t heard from the Spine Clinic. We chitchatted the rest of the time. I got to see my nurse for a quick minute.

I went off to the Infusion Center for my bone shot twenty minutes before my appointment time, and again, I was called back early! OMG! Best hospital day ever! I got a bay to myself. I had magazines, earphones, my phone and a warm blanket like I was going to stay an hour.

Nope! My nurse was on top of it, and had my shot ready.

I left the hospital at my scheduled bone shot time of 1:50/2, and I was home by 2:45.

On the way home, I called my dad. I had to tell him the news about my blood levels. We talked for almost the whole ride home, a good 45 minutes. He told me about a friend who has used a treatment pill for almost 20 years (or was it 10? my memory…think he and his sister were both diagnosed the same year) for ovarian cancer. His sister had been diagnosed with ovarian cancer in 1997. Since she had already been through Leukemia treatment in the early 80s when they basically microwaved all of you for radiation treatment, she didn’t heal from ovarian cancer and died in 1999. I remember visiting her in the hospital in the 80s. She was never the same after getting treated for Leukemia. Always too hot. We focused on the friend still living.

I got to pick up my son from school and take him to his haircut. I told him about my blood levels. He got a little excited. (He’s 14, so excitement can be subdued.)

“Does that mean you don’t have cancer anymore?”

“No,” I told him. “There’s no cure for my cancer…yet, only treatment. I still have cancer, and treatment is working!” Yeah, it sucks to have to deliver a reality check.

The good news is that my levels are normal, and I’m feeling pretty darn good! I’m hoping to increase my activity level and start strengthening my back and leg again soon, leg at least!

I was referred to the Pain Clinic today by my doc. I don’t know what that means exactly. I couldn’t get a hold of them today on my lunch. I assume it means that I have pain and no one can explain it, so I get to meet more people at the hospital. 😀

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Back Healing Progress!

A week ago, I expected to wake up in horrific bain pain. On Sunday, I had painted interior doors, vacuumed the whole upstairs, mopped, and danced a little while making dinner. All of these things had previously caused me so much pain. Dinner gets made with the power of a painkiller. I took one that evening. And that morning too. I had done everything lefty that day because the right side of my back hurt so intensely that I didn’t want to aggravate it.

Monday morning rolled around, and I got out of bed expecting to have burning pain radiating out from my spine into my ribs. I expected every movement to hurt, even breathing. I expected to reach straight for a painkiller on my way to the bathroom.

I didn’t.

I woke up and I felt fine. It was so weird and a welcome breakthrough in my pain and healing. I didn’t need anything for pain Monday, Tuesday, or Wednesday. Thursdays I have a longer commute to work, and my back doesn’t like it, so I started rotating Tylenol and Ibuprofen that day and on Friday too. Friday I added a lidocaine patch to the mix.

The Thursday the week before, I had started listening to a meditation on healing on my Insight app. It’s really soothing before bed and only about 20 minutes long. I think it’s helping to focus some energy on healing.

Last Tuesday was the 10-week mark. I don’t know why it took me so long to start feeling relief from back pain. The standard recovery period after kyphoplasty is 6 weeks. I know my body is healing from more than just back surgery. I had ablation too, and that really upsets the bone. Plus the hip healing and cancer in general probably slowed healing down. I feel encouraged to have made progress and not hurt constantly! Managing pain 24/7 makes it hard to feel hopeful sometimes. I’m grateful for painkillers, over-the-counter and prescription.

Husband and I went for a walk tonight before making dinner. I like feeling like I can go for walks again! I did a little yoga, too, and held a plank for a few seconds. Also, I’ve noticed that I feel more compassionate when I see someone else walking really slowly in the neighborhood. Maybe that person is recovering from surgery too. Never know. I’m just glad to be out and moving and celebrate others doing the same thing!

One last thing, my back MRI results read as ‘unremarkable.’ So terrible pain happens for no apparent reason. My oncologist forwarded it to the Spine Clinic on Sept 23rd. I still haven’t heard from them. I kept saying that I knew it would get better, and it did.

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Horror Movies & Me? I tried!

My husband looooves good horror films! I’ve seen more scary movies during the time we’ve been together than I ever have in my whole life. This summer, we saw Midsommer. While parts of it were funny, and super creepy, or disturbing, I felt emotionally drained at the end of it. C was impressed I made it through the whole thing. I think I kept my eyes open during most of it.

Then we saw It: Chapter 2 last month. I couldn’t watch a lot of it. I’m jumpy as it is, and the movie did a good job at making me jump.

Anyway, I’ve decided that after watching scary movies, I feel drained and tense all at the same time. My jaw gets tired from clenching for however much time. My muscles, yeah they’re still coming back, feel sore. My brain gets overloaded with all the emotions a scary movie makes you feel. I don’t like it. It’s too much to process. Maybe it would have been better to watch at home where the screen isn’t so big.

I tried. I may try another. I enjoy movie dates with my husband, which is why I go in the first place. The horror movies, though? They’re not my fave. I really enjoyed Ad Astra! And Once Upon a Time in Hollywood! Can anyone else relate?

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10th Anniversary of the Most Horrible Day of the Year!

September 21st used to be the most horrible day of the year for me. Ex died 10 years ago. I have always said every year it gets easier. It’s still true. This year just wasn’t a big deal.

Little Guy and I went through a family grief support group this summer. He has been to a several weekend camps for kids who have lost an immediate family member. I had never experienced a group therapy setting. I went to counseling during the year after Ex died. It was by myself and infrequent.

With the help of a trained professional, I was able to tell Little Guy his dad died by suicide. Finally! We were both relieved. I had evaded the question and left things vague until the end of May this year. When Ex died, the counselor I saw said that I didn’t need to tell him then. He was only 4. She advised that I give him little bits of information over the years. Since he was so young, he ran the chance of forgetting all about his dad, too. That didn’t happen.

I had always intended to tell him with a counselor present who could help us both through it. She prompted Little Guy about the feelings that came up for him with every new detail and encouraged his questions. We had a really good talk, and it’s still hard for me to talk about the day it happened and what I believe led to it.

Little Guy’s first question was “Why?” Sorry buddy, the note Ex left was not helpful. I shared my theories. The second question was, “Did he do it with the chainsaw?” I thought this was hilarious! He asked it seriously. But no, he didn’t. He didn’t ask that day how his dad killed himself. That came up later in the summer during therapy.

Little Guy and I had some great discussions, often late at night, in the dark on the couch or in his room. And some heartbreak for him too. At first he didn’t want to believe that his dad died by suicide and that it was an accident. I had to reassure him that no, it wasn’t an accident. That sounds weird to reassure Little Guy of the truth in this case. It was one of the hardest things I’ve ever done.

The first few weeks after I told Little Guy brought up the most questions and feelings It got better after that. We were a couple weeks into the group counseling, so I had some tools to help him through it this time! Yes! And myself! Double yes!

Little Guy also told me that he had blamed me for the divorce. I still need to talk more with him about this. I’ve gone the route of it was a mutual break, and it was. Of course, there’s more to it, and I want to explain little bits at a time. Be honest, gently honest.

Anyway, Little Guy had a pretty easy time through his counseling sessions. The kids were separated into small groups by age, and all the adults (all moms this session) went together in a room for counseling weekly for ten weeks. He related to a lot of the other kids, who had gone through much more recent losses by suicide. Since it wasn’t as fresh, he didn’t remember a whole lot from when his dad died. I still remembered a lot and cried at some point during every week’s meeting. Sessions stirred up memories in a healthy way and let me release some of the burden by sharing parts of my story with the group.

I dreaded this year’s anniversary. I didn’t know what to expect. Would it be harder after going through group counseling? Easier? I also knew that I had a high chance of having to work that day, a Saturday this year. I was right. Since I was still dealing with extreme back pain, I was tracking my medication and remembered the anniversary when I wrote down the date that morning. If I hadn’t done that, I don’t know how long it would have taken me to notice and remember. Probably would have been at work filling out a form. Woof! I’m glad I remembered at home before I had to face the public. I had my whole drive to face grief and put it to the side when I got to work. I kind of forgot about it the rest of the day. Snippets here and there. It was pretty easy.

I hope that I gave hope to the other moms in my group that it does get better and being a full-time single mom becomes normal and less hard as time goes by. I struggle more with physical pain now than emotional. That’s also getting better.

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Podiatrist visit

I’ve had pain in my left foot where the third and fourth toes connect to my foot ever since I trained and ran two half marathons three years ago. It aches constantly, but not so much now that I’m not working out or running. If I stand too long or walk too far or my foot gets stepped on, it doesn’t like that.

Since I now freak out about bone pain because I think it’s fractured and will therefore get a tumor, I had it checked out with a CT scan. Nothing. It was clear. My oncologist sent me to the podiatrist with a guess of a Morton’s neuroma.

I saw the podiatrist on Friday, and she did a bunch of tests, like squeezing my foot from the sides, and pushing on the pain point with her fingers. Then she started tapping on my ankles and legs, which didn’t feel very good on both legs. Her diagnosis: not a Morton’s neuroma. She thinks the pain is related to nerves in my back.

It makes sense. My feet feel numb when I’m standing and I look down. I can feel it shoot all the way down my back, back of my legs, and to my feet. My back is still healing from surgery, and I swear something is sitting on a nerve, even if the preliminary MRI read otherwise. She also told me to wait to hear from the Spine Clinic for a better MRI interpretation because sometimes they subcontract those out to people all over the world and get less-than-accurate results.

I expected to get an injection in my foot for the pain, but she said it would probably make it worse. She and I talked patient-to-patient about pain and anxiety, and how the two can feed each other because it can remind us of when we weren’t well and what it meant then, and the tension increases, then the pain, then more tension, etc. She recommended a few things I already do, like meditations to address anxiety, and some new ones, like aromatherapy and acupuncture, which I haven’t tried yet but have wanted to. I have always heard it’s amazing for back pain. The hospital has an integrative medicine clinic that offers acupuncture. I will call next week.

We talked about shoes, and she gave me a shoe guide. The good ones cost money that I don’t mind spending to keep my feet happier. She pointed out what to look for in a work shoe that would support my feet and let them relax better in the shoe. I need shoes with sturdy shanks that support the mid-foot when walking, and a shoe with a strap, so if my shoes are loose, I’m not gripping the shoe with my toes to keep it on. She recommended two orthotic insoles and said her husband swears they cleared up his back pain. I’m already wearing good, supportive work shoes, but I don’t have a strap on them. They used to fit a little loose, but my feet have some minor swelling post-surgery that have filled the gaps.

Ok. My painkiller is kicking in, and my brain is feeling numb, so I’m going to go back to bed. I’ll keep healing! Pain will get better!

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