Today is a snow day. I’m home with the kids who are kinda getting along for now (5 mins later, okay, I lied) and playing lego wars. My goals for the day are to get caught up on laundry, keep on top of the mess that the kids will inevitably make and if I have enough energy left I’ll try to maybe make something for dinner. Although this list seems modest for a normal mom who has an unexpected day off work but it’s an accomplishment for me because I am in recovery.
The thing about recovery is that it is indefinite. In many ways recovery is more difficult than being sick. When I was a sick person all I had to do was be sick. It was my full time job and I did it well. I perfected the art of doing nothing. I think back to when my mom was sick in her last months and I worried that she could spend hours just staring outside. But now I understand. When you are a sick person it’s difficult to read, TV was sensory overload, memory was in and out from medication. When the body is fighting to stay alive the mind must rest.
Now in recovery I feel ready to do more than my body will allow. I am frustrated by all the things that I can’t do. I haven’t been able to do them for over a year but now I bothered by the things that my body can’t do. In this way recovery is harder mentally than physically. I have to give my body time to heal but I’m also trying to establish myself back into the world of well people. I’m moving from Cancertown to Wellville and it’s not easy. Now that I’m part time sick person part time well person I have to balance between family, work, rehab and appointments at the hospital. I have two days a week at work and the other days are filled with doctor appointments, physical therapy, attempts at cooking and cleaning for the family and resting. I’m realizing all the things that I haven’t been able to do and it’s painful to think back on the events and activities that I’ve missed.
Recovery is also difficult because a significant portion of the time I still feel pretty fucking awful. It’s not unusual for me to fall into a deep sleep at 6:00 pm. Even now I’m fighting the urge to go back to bed and I’m verging on puking. After an illness like mine you are never again fully well. As we found out recently when I went to Urgent Care for a strep swab non-oncologist doctors are afraid of me. I’m too much of a liability. This particular doc called the squad and I earned my first ever ambulance ride to the hospital and a night’s stay under observation. My heart rate was high and blood pressure low and they were concerned but that’s really just a response to a virus. The good news is that Xander got to ride up front in the ambulance and the driver turned on the siren for him. Amira is jealous and asked if she could ride up front in the ambulance next time.
Friday I was NPO for my MRI with contrast at OSU Morehouse for my left ankle. Since I wasn’t supposed to eat or drink I just stuck to my two cups of coffee in the morning. Since I broke the rules I took my nausea meds before the appointment. Also warned them that I like to vomit from contrast and that my last MRI was extremely painful because of positioning. This earned me the VIP treatment.
I tried to meditate during the exam but the Beyonce pandora station was less than conducive to a meditative state. I did have an epiphany. I decided that I should go to school for my doctorate. I came out asking Jeff if we could move to Florida. He said no. Cause hurricanes.
Back to the point of this post. Immediately following my MRI we went to OSU James to see the doc for the results. I barely had time to sip my free cancer waiting room mocha latte when we were brought back. The doc jokingly said, “Long time no see” and pulled up the images on the computer while he held my foot in his hand. As suspected I do have AVN in my left ankle the same as my right. I also have inflamation in the bone. He palpated the affected areas trying to elicit a yelp to gauge just how much pain I’m in. They never just take my word for it.
The good news is that he doesn’t see a fracture on the left side and I can stop wearing the boot for now on the right. I don’t immediately need surgery but I will eventually. This condition doesn’t fix or get better so treatment is based on my pain and functional activity levels. I hope to preserve my joints until someone invents a decent ankle replacement.
Right now treatment consists of bone building supplements, swimming for exercise and “taking it easy”. I’m supposed to stay off my feet as much as possible. At least until the spring when we will get another look at the joints.
This week on Thursday I go to the hospital, my home away from home, for my one year post transplant bone marrow biopsy. Next week we meet with the doc to go over results and current side effects and plan next steps.
Today we took a family trip out to eat and to Target. At big stores I use the scooters or wheelchair. Jeffrey though it would be hilarious to let Amira push me. Here Im saying, “No, go straight!”
I’ve been getting quite a few messages and phone calls since my last post since apparently it was too much of a downer. I’d like to assure people that I am, like, okay using one of my favorite Girls memes. Today was a good day and I took the kids swimming while I did my water pilates and then we went out to lunch as a family. Not bad!
Last year I watched the premiere of Girls season 2 in my hospital bed with Victoria. This year I’m putting on clean sheets and we will watch the premiere of Girls 3 from my bed at home. Recovery is relative. Can’t wait.
Also, I’ll update here on Friday following my MRI and appointment.
Here’s a few good things from the last week:
New Alexander McQueen necklace cause I love it:
Cupcakes from my orthopedic surgeon’s office cause they love me:
New Years Eve 2013. This is the year I got new blood cells. I could do a year in review summary but it would read like a horror movie. There are good things too but good things always seemed to be overshadowed by the horrifying. I know all about positive thinking and trust me that I do it every day. This isn’t going to be a feel good year end review. Because, well, I’m not feeling it. I try to be honest in my blog because I have readers far outside just my friends and family and people need to know what happens. It doesn’t help other people struggling to gloss over things just so I can save face. And recently I haven’t been able to blog because I fear being thought incompetent. If I share too much some wonder how I’m even able to function let alone work and take care of my children. How can a person go through what I’ve been through and then be able to go on and be normal? The answer to that is just that I am here. My mind is fresh. My body will take longer.
At almost a year after transplant I am seemingly better in a lot of ways but the coming tests and appointments over the next few weeks will tell for sure. I will have a bone marrow biopsy to check for leukemia. Blood tests of all kinds to check levels of white blood cells, red blood cells, platelets, electrolytes, minerals, neutrophils, hemocrits, hemoglobin, lymphocytes and so on. This information will guide my medication and continued treatment. They search the bone marrow superficially and then use computerized scanning machines that can find the tiniest little mutated cell in a sea of a thousand. Initially I had almost all mutated cells in my blood. After two weeks of chemotherapy not a single one was found. They have not seen a cancer cell in my bone marrow since. I don’t expect that to change.
I was told before transplant that a person usually trades one disease for another. Going in they can’t predict what will occur but patients usually end up with other life long afflictions even if the cancer is cured. It will be a long time until I am considered cured but it turns out that so far I’ve traded leukemia for bone disease. It won’t kill me but its a disease to be treated carefully. It’s dehumanizing and crippling. From my perspective I never thought that I was dying. My head just never went there. I know that I could die from this and that there is a very real possibility that I will die from cancer at some point. And yes, I will say it because no one else will. I know that most people had doubts that I would make it this far. People didn’t expect that I would get to come home or return to work or do any of the things I’ve been able to do.
But what I’m dealing with today is not something I expected. The thing with cancer is its not all or nothing. Its not as simple as dying or not dying. In spite of all the amazing success stories you’ve seen on TV or read about in human interest stories in the paper, cancer isn’t something that either kills you or you then go on and do great and fabulous things like running a marathon. Sometimes you stay alive but at a cost. The price and the worth is subjective. And the pressure to go on to do great things and live life to the fullest is too much. I just want normal.
I have osteoporosis and Avascular necrosis in both hips and ankles. I suspect that I have it other places as well but they only scan one place at a time and its guided by my pain. The pain that I had in my hips is AVN and my current pain in my ankles and the cause for the right fracture is AVN. Yesterday I had a X-ray that showed my fracture healing but AVN still apparent in both ankles. He said that the location of the death of tissue is “challenging”. He kept using that word until I asked him to stop using subjective modifiers and just tell me what it means. He said that maybe 20% of the time my condition will heal. That means that 80% of the time it won’t. When I was diagnosed with AVN in my hips I was told that the treatment is a hip replacement. There is such a thing as an ankle replacement but they suck. Doctors won’t replace ankles in a person younger than 60 because the synthetic replacements won’t last very long. Depending on what the MRI says my options will be to
1. Live with the pain and hope maybe it will get better.
2. Core decompression surgery. The doctor drills holes in the bone to stimulate vascularization.
3. Ankle fusion surgery. The doctor screws my ankle to the foot. This permanently locks the foot at a 90 degree angle. There is no up and down movement possible but some side to side range of motion preserved.
4. Cadaver bone graft to replace my ankles with one from a “dead guy”. Quote is from my doc.
These options aren’t great and I don’t know what the best option is yet but I have to start to recognize my limitations and do what I can do instead of focusing on what I can’t. I will probably never run again. But I never really liked running anyway. That crossfit stuff that hot people do at the gym? Not possible. I can swim. I’ll probably be able to do yoga. I was whining to my dad on the phone because I wasn’t seeing the positives and how to remain functionally independent with my physical condition. He had some very decent ideas on remaining active and utilizing what I have left. Sometimes just a change in perspective is all you need. Sometimes even though you can’t do everything you have wanted its okay because the alternative really isn’t that bad. It hurts my pride in a lot of ways because I want to be super woman and do it all on my own but I can’t. I think this year will be about accepting these things and finding contentment in what I have. And I think it’s this way for everyone. Not just cancer people. It’s not settling to adjust your goals. This time last year my goals were to shower, brush my teeth and walk around the transplant floor everyday. Today, those goals are easily met. I know I push too hard and too fast and it does more harm than good. I am here and that’s enough. It’s not a wasted life.
Surgery went well. My doctor screwed me twice although I was under the influence so I don’t remember much. I let my pair of beautiful (women) anesthesiologists know that I always throw up after surgery. I think it was their daily mission to keep me from doing so and it worked! I had to agree to being more sleepy in exchange for not puking but that’s a no brainer right there.
It’s hard to tell but I did paint my toenails white with the words “Screw me” written in black marker. Harassing my medical staff if one of my only forms of entertainment.
Bad news doesn’t even faze us in this family any longer. This morning I went for my check-up on my ankle fracture and the X-ray says its still cracked. I am having surgery in the morning (Tuesday) to put a couple screws in to secure the bone so it doesn’t get worse. He likened it to putting rebar in cement to keep it from cracking.
I told the kids I would be having surgery and they said, “okay, what’s for dinner?”
So, I’m going in to get a little cut and a couple screws. Doc thinks I’ll be able to go home the same day. I know surgery is a big deal but I’m thinking of it in a different way. I’m well enough that a surgeon agreed to cut me. I’ve needed procedures before but no one would touch me because I was so sick. This guy said my best chance is a surgery and I agreed to it to attempt to solve my ankle pain.
I call Jeffrey and said, hey, so Im having surgery tomorrow. He says, “okay, I’ll get work covered.” It takes a lot more than an ankle surgery to knock us down.
I’m sitting in the livingroom wrapped with my electric blanket, a fleece vest borrowed from Jeffrey, my sleepy pup burrowed under my legs and fingerless gloves holding a Grande Skinny Peppermint Mocha from Starbucks. My body can’t seen to regulate it’s temperature and I’ve been on a constant fluctuation between chills and sweats for days. It might be hormonal. Or, it might be my body saying “WTF!” since I spent most of the winter last year in my temperature controlled hospital room where I kept the thermostat at a toasty 80 degrees so that I could lay around with no pants and tolerate the tile floors when I was forced to move from my bed to the toilet. I think almost wistfully of those months spent looking out the 3rd floor James window to my view of the valet parking and a tiny corner of OSU campus that was so pretty covered in snow. I never had to leave and I could listen to online radio in my underwear when I wasn’t sleeping or being poked and prodded by the constant barrage of doctors and nurses. The passivity and lack of personal responsibility during this time is enviable. This is also my first winter without a garage. I have a remote car starter, heated leather seats and automatic heat sensors in my car but I still squint my eyes under my red organic wool hat and run from the house to the car as fast as my crippled legs will take me.
And yes, My legs are kinda crippled. The fracture in my ankle has healed but the MRI revealed that in addition to the avascular necrosis in my hips I also have this condition in my feet/ankle joints. This is the pain that I have had in that area for months. I was fairly depressed about having this condition in my hips but the ankle situation is worse. It’s more difficult to prevent impact on my ankles and there is no “ankle replacement” surgery option. So, what do we do about it? The solution is for my bones to strengthen and repair themselves. I have joint pain most of the time and it’s because of the disintegration of my bones. I have been prescribed calcium, vitamin D and bisphosphonates. The IV treatment of Zometa that last landed me in the hospital is probably going to be given again. It gave me a high fever, flu-like symptoms and severe pain for a day and a half but then I was pain-free for 3-4 weeks. Worth it? I’m not sure. To be honest I’d probably try it again. I’ve been told that only the first dose has severe side effects because of the activation of t-cells. Some of the people I’ve talked to are shocked that I would do it again considering the poor reaction I had last time. I think I must hide my symptoms well. I’m in pain ALL THE TIME. I also refuse to take the proper dosage of pain meds to cover it cause I don’t like opiates and I’m still not allowed to take OTC pain meds.
The cold is making it more difficult but I have an arthritis/injury class at the YMCA. I’m the youngest in the class by 30 (40?) years. That also makes me the most attractive by default. The silicone doesn’t hurt. I go to work, the Y, the hospital and home. That’s about it for me but I’m happy. My hair is growing. My face is thinning and I feel more normal. It also helps when I try to eat closer to my goal of 1500 calories a day instead of the 700-800 calories on which I was subsisting. I still don’t want to eat. I eat because I have to. I’m considering starting a diet of just Soylent to avoid the need to eat at all. I’ve tried other dietary supplements but the sugar content gives me migraines. The place where I feel most normal and healthy is at work.
To me, my job has been easy to get back into. I still easily prepare for and provide therapy but dread the paperwork. For those who don’t know I’m a speech therapist for special needs middle school children. I love it and wouldn’t trade it for anything. I wore a wig for a few days when my hair was being obnoxious and I didn’t want to take the time to style it. Some of my students were terribly confused. “Ms. Tadlock, did you get your hair cut?” I answered yes. A half hour later the same student says, “Wait, was your hair used to be longer?”. And this is coming from one of my students with the least amount of disability. I’m now locked in to wearing the wig since I can’t stand to confuse them even more. It’s okay. I seem to be taken more seriously with a “normal” haircut.
A summary of my days in a picture:
Tonight was pill sorting night. I hate pill sorting night. I’m glad I’m not a pharmacist because the one day a week I have to count and sort and refill meds make me groan with boredom and annoyance. It’s a necessary part of my routine as a sick person. I take pills three times a day for currently a total of 22 pills daily. If I make a mistake I can end up sick and in the hospital.
Hence, my trip to the ER this week on Monday.
I had a poor and unexpected reaction to one of my first chemo meds (Vincristine) from when I first started treatment. It caused an autonomic neuropathy that cause my heart rate to be tachycardic and my blood pressure to drop so low that I would black out. Since then I have been taking two heart medications. My heart is actually fine but the nerve disorder prevents it from doing what it’s capable of doing.
Back to this week, Monday. My nurturing and hilarious friend Jon took me to the OSU medical center to see the orthopedic surgeon to check on my fractured ankle. I’ve been feeling well with no ankle pain so I decided to walk from the parking garage to the office on first floor James hall. I remember walking. I’m pretty sure Jon cracked a joke about how I need to walk faster and how I’m such an old lady. And then the hallway got longer and narrow. I saw people walking in front of me but they were far away. I had no peripheral vision and I could not focus my eyes. I was told that next Jon got me to stop and I leaned on the wall. Then I leaned on the wall and on him. I got heavier while he tried to get my attention. I could not see him and he laughs now that I asked him “when did they put a river in here?”. At this point I remember nothing but I was obviously fainting or passing out. Jon, who’s heart is sometimes bigger than his head, knew that I did not want to go to the ER because I always get sucked up into the hospital vortex and it takes days if not weeks to disentangle and get back to the world. Re-admittance has been frequent and unavoidable so he gave me a chance to snap out of whatever was happening to my body.
At this point a nice blonde nurse stopped to help. It was the nurse from my orthopedic surgeon’s office who came down the hall to get his coffee. I don’t remember much at all except a lot of blonde hair and a handsome doctor behind her but apparently she did an assessment and I failed. She said we needed to go to the ER and I argued and said I was fine. I was just needed to get my ankle checked. Thankfully, Jon and the nurse and probably everyone in that hallway at the time knew better and I was wheelchaired to the ER. Again, I got a direct pass and didn’t even have to go through triage. They must see my name pop up and start making my bed. Although, this time there were no pillows to be found so Jon did his best with a rolled up sheet to lay my head on.
The cause of this episode at the hospital was a mistake I made with my meds. Those two heart meds that I’ve been taking? Yeah, I was supposed to have weaned off of one of them months ago. It is this medication that along with my empty stomach and possible dehydration caused me to become the crazy hallway lady refusing to admit that she was passing out.
I got out of there relatively easily and the end result is actually positive. I don’t need as much medication and my heart nerve disorder may be repairing itself. Getting home I slept for about 24 hours straight and since then I’ve been feeling great.
I’m happy that October is over and I can go back to white caps on my Walgreens instead of pink.
For the past two weeks I’ve been wearing my orthopedic boot all hours of the day except for sleeping (which is a lot of my hours, BTW) but finally now I’m off the crutches. Jeffrey borrowed a set from work for me to use because it was terribly painful for me to put any weight at all on my right foot. This has been me for the last two weeks. Click the link for the video:
This evening after work my best blonde friend took me to OSU for a X-ray of my pelvic lower back type area and a MRI of my ankle. I’ve had many MRIs done over the last two years and today’s may have been the most uncomfortable. Really, it’s a deadlock between what went down this evening and the MRI I had immediately following my breast cancer diagnosis. That one is done face-down with your boobs hanging between two round cut-outs in the table. It was also my first one so just as terrifying as it was uncomfortable. For the ankle MRI my weak and atrophied leg and ankle were strapped into the compartment while I was flat on my back with my other leg out straight. This position pulled my legs tight and stretched my hamstrings to the point where my muscles started cramping. It wasn’t charlie horse bad but it was enough to cause tears to stream from the outside edges of my eyes down to the headphones covering my ears. I swear the tears had nothing to do with Sarah Bareilles playing on the streaming radio.
It will be just a couple days until hear the status of my bone situation. I’ve been feeling less pain for the last few days and now I’m hoping I will have a chance to get stronger again without fractures.
Second video of the day: