Monthly Archives: August 2013
In the last week Ive seen several doctors. My primary hematologist/oncologist examined me head to toe for GVHD and then agreed to take me off of the last steroid that I have been taking after telling her that I was planning on going non-compliant with my meds. I went into the appointment frustrated because I finally read the possible side effects of a drug that I have been on since my last hospitalization. It’s a steroid that is supposed to stay and work just in the gut and therefore cause significantly less side effects than prednisone. I’ve been tapering off the pred since June but I have continued to gain weight especially in my face and abdomen. I am round and puffy and feel pregnant. I read that rarely this gut steroid, typically used to treat Crohn’s disease, can have side effects very similar to prednisone. Uncomfortable and waddling I went in ready to tell the doctor that I was going off the med whether she agreed or not. She would have to have a very compelling reason for me to stay on. She didn’t need much convincing and now I am off of ALL steroids. Losing weight might take awhile. The problem is that I’ve been on high doses for a long time. I have significant muscle atrophy. These are not the kind of steroids that body builders take. These make your muscle die and turn them into a gelatinous watery fat. I have to build muscle to lose the fat which is hard since I have a fractured sacral bone and AVN in my hips with limitations put on me for physical activity. I’m waiting for the gym’s swimming pool to open back up so I can get back to exercise. In spite of the evidence showing tissue damage on the MRI I continue to believe that my pain will subside as I get back to a normal weight since there will be less pressure on my joints.
My primary doc panicked a little bit about my hips and called the orthopedic surgeon to let him know how special I am and get his opinion on the MRI. He (ortho) looked at my MRI results and told her (primary) that I would definitely need a hip replacement. I don’t actually have pain in my hips. All he knew was the description of my pain level and how much my walking and activity has been affected. My pain is from the sacral stress fracture and I also have significant pain in my feet and ankles. The joint pain in my ankles is likely from the swelling. That should go down soon. The ortho wants another MRI anyway. I’m also getting a bone density scan. Both of these happen Friday morning super early before work. Because I’ve had 2 fractures, 3 actually because my sacral fracture is bilateral, there is concern about the condition of my bones. Radiation and chemo can cause weakening of the bones.
This picture shows my sacral stress fractures. There are two of them. I only know anatomy and physiology from the chest up so forgive my lack of vocabulary. Right above and on either side of the dark circle in the middle are two lines that extend vertically through the bone. Those aren’t supposed to be there. Those are fractures.
This one is darker and shows the Avascular Necrosis. You can probably locate the ball and socket of the hip joint. The white squiggly lines going through the ball part are the cut off of the blood supply causing dead tissue. At some point I’ll probably need to get new hip joints put in.
This morning I saw a nephrologist about my kidneys. Because of the edema that has gotten worse instead of better, the doctor worries that there is some GVHD of the kidneys. Some of the numbers in my blood are a little off but my 24 hour urine test came back normal so there is not significant concern about kidney damage. However, they never just watch and wait with me. They test obsessively until they know for sure. The nephrologist says based on blood and urine tests it is highly unlikely that I have GVHD of the kidneys. Yay! He also ruled out nephrotic syndrome which was the other looming possibility. There is not going to be a kidney biopsy at this time. The question to be answered is why do my creatine levels continue to be high? They have been trending upwards since July. The Nephrologist thinks that a medication I started to help with the water weight gain is causing it. He is running blood and urine tests again to be sure but he may want to reduce or change my medication. This is such great news that I almost wasn’t even annoyed by the 2.5 hours I spent at the medical center today. Just for the doctor and labs. That’s called hospital time.
In less boring news we all had a great time at the Be The Match Walk and Run! It was a beautiful day and I enjoyed my view from my wheelchair as the amazing Emily pushed me for 3.1 miles up and down hills. There was a big group walking with me and that made it so much fun. Most of the kids ran the 1K and then stayed with the high school babysitter while the adults finished. Jeffrey didn’t take long to get back to the start/finish but we had 2 stars in our group this year. Kerry won the 40-49 age group and one of Jeffrey’s co-workers won 1st place in the female Master’s category. Many of us set personal best records. We should all be proud of attending and raising money for the cause. Be The Match uses the funds for patient support and also to cover the costs associated with entering individuals in the donor registry. Becoming part of the registry requires just a cheek swab. If you would be willing to donate bone marrow or stem cells then request a kit here.
Pictures from the race:
Emily pushing while Amy laughs at my obviously super funny joke. Katie and Amira keep up.
Amira holds baby Sophia who got to ride in her stroller for her first 5 K
Orange for Leukemia
Xander and Nate post race.
I am running for Mommy
Our personalized wristbands are in! These are custom design for me and the Be The Match running team. However, they are cheaper in bulk so I got 200. The orange is for leukemia, the green is for Be The Match and the slogan is for me. Cause Live For Today. $1 each to help cover costs.
Don’t forget to register for the event and get your donations in to be counted!
Remember how I keep mentioning that sometimes we wait for the next bad news? It’s not intentional but there are so many things that could go wrong. The doctor thought long and hard before deciding on transplant because it can be like trading one disease for another. The number of possible complications is overwhelming. Our Doctor visit on Thursday included bad news. Not the worst news. I still don’t have cancer. I got the results back from my MRI. I have AVN (Avascular Necrosis) in both hips. I was told before that this was a possibility and the MRI confirmed it. I’ve written on the subject previously but essentially there is death to the tissue around my hip joints. And dead tissue doesn’t grow back. The ultimate treatment for AVN is hip replacement but we are not necessarily there yet. We are all waiting for what the orthopedic surgeon says. I also have a sacral stress fracture. I’m not sure how or when it happened but I’ve been having lower back pain. I had pain spasms in the dentist chair. Maybe the dentist broke my sacrum. The stress fracture is bilateral so it goes across both sides somehow. My physical therapist looked at the report and told me to use a walker when I can. I hate using a walker and a cane but they actually help me get around better and with less pain. I guess I have to use it.
Image of patterns of sacral fractures.
This blog post offers more questions than answers but that’s all we have too. I am taking this weekend to rest my back and leg, ankle and feet pain and see if it helps. I actually haven’t tried resting. After seeing my MRI the doctor asked how I’ve been able to walk and move around at all. Jeffrey volunteers that I’m stubborn and have a high pain tolerance. The nurse agreed on the stubborn part. I actually build in resting time but since I’ve haven’t been told otherwise I have continued to exercise in the pool and go to the store and walk outside when I can.
The other news from the doctor has to do with the prednisone and the 27 lbs Ive gained in a few weeks. My doctor is concerned because this is very uncharacteristic of me. As I’ve gone down on the steroids my weight has come up. There is a possibility that it’s just the accumulation of steroids in my body that has caused the fluid retention and “moonface”. I remember when Ashley Judd had to defend her puffy face because media is crap and accused her of too much filler. My face is more severe than that now but I’m going with the too much restylane claim. But she wrote a kickass feminist essay about her puffy face and I am empowered by her words.
Besides the physical appearance which means very little to my doctors and my friends and family. They are just happy that I’m not in the hospital and that I no longer have cancer in my body. To everyone’s credit no one has flinched to see me although my appearance is suddenly altered. Friends and co-workers have been incredibly respectful of my privacy. I’ve been here before with sudden weight gain and it goes away but the worst part is during. I’m so uncomfortable.
Back to why my doctors are concerned. Based on blood tests and protein levels in my blood (low) there could be GVHD in my kidneys that is causing protein to be released and allowing the fluid weight to accumulate on my body. I have been taking Lasix (water pill) to keep some of the fluid off but it’s become less effective and the doctor took me off for the weekend so that I can do a 24 hour urine test. This starts on Sunday and I collect ALL of my urine for a 24 hour period to be taken to 11th floor James and to the lab for analysis. I also am scheduled to see a nephrologist. There is a possibility of a kidney biopsy if there are indicators of GVHD of the kidney. My main hemotology doctor has determined that my body cannot tolerate the use of steroids for treatment of GVHD so we need to look at alternative therapies. I hate prednisone but the other therapies don’t sound great either.
My goal at the beginning of the summer was to be able to walk the Be The Match. That’s not going to happen. I’m going to be in a wheelchair but I will participate. Also, as a reminder, our team is large this year so far but we still have some fundraising to go to meet our goal. Last year our donations came in too late for our team to be recognized so if you are going to donate do it soon! I did not get team t-shirts printed in time cause I’ve kinda had a lot going on but I will have 200 wristbands for our team and everyone who wants one! I designed them myself and they include leukemia and Be The Match colors and the phrase “Live For Today”. As soon as they are here I will show them off. I am going to ask $1 each to help cover the printing costs of the wristbands.
Don’t forget to sign up if you are running or walking and make sure you get your donations in. August 17th is almost here and I’m excited to show our support for this organization and to see all my amazing friends who are coming out to support. Here is the link to our Team Perfect Match website:
I have reached another milestone of 180 days since my bone marrow transplant. That is 6 months. It’s hard for me to believe. I still have issues but I’m doing relatively well. My most recent biospy showed no signs of leukemia and my platelet count is magically coming back up and hopefully will continue to trend upwards. Not Robin Roberts well but I might be getting there. My prednisone dose was lowered to 10 today so I can start getting off this extra 20 lbs that is weighing me down and making me so uncomfortable this summer. With the lowering of steroids there is also the hope that my hip joints will get better and maybe I’ll be able to walk normally and there won’t be permanent damage requiring surgery. I go for a MRI this week to see. I use my cane when I need and I use my handicap parking tag. It saves my energy and joint impact.
Now that I’m 6 months old I get to start all my childhood vaccinations. When they wiped out my immune system they took everything out including any shots or boosters I’ve ever received. This week I got 5 shots. Polio, Hep B, Dtap, Hib and pneumonia. I remember watching my babies get their shots at this age and no wonder they cry! The shots sting and then your arms hurts for days. Unfortunately, 11th floor James clinic did not have super hero bandages.
How do I feel after 6 months?
I’m okay. I still get tired easily. I still have to schedule rest breaks. My body doesn’t do what i want it to do yet but i try everyday. The medications have caused muscle atrophy that I am trying to build back up but it’s hard when I’m still on the medications. We took a little family weekend trip to Dayton because Alexander really wanted to spend two full days at the Airforce museum. Amira and I went in for a little small tour but we mostly spent time around town swimming and going to the park and watching movies in the hotel. It was fun and the family had a great time. I got home and was completely exhausted. I could not move for Sunday and most of Monday. I felt like I was back at those days when I could not get out of bed before 2:00 pm. Tuesday was better and I was able to get back to my normal activities.
I seem to get every single side effect from this drug. I am exercising mostly in the water and I take small walks. I had made a goal at the beginning of the summer that I would be able to walk our 5K for Be The Match. I’m not going to be able to walk a 5K I don’t think. I may have to do the 1K or push a wheelchair for the 5K in case my legs give out. It really depends on what the MRI says. As of today we have raised 50% of our goal money for the run. It costs approximately $100 to add a person to the bone marrow donation registry and our team would like to help off-set that cost because we know how important it is for everyone willing to donate bone marrow or stem cells to be able to register.
Emotionally I’m up and down but it’s mostly from the prednisone. I feel angry over the last year. Where did it go? A year of my life is gone and I only have foggy passive memories of it. I regret missing out on that time with my children and I’m both honored and saddened my what my husband has gone through. He takes care of everything and just keeps going. I am sad and affronted by the injustice, the infraction that cancer has put on our life. Yes, I get pissed and i think that’s okay. I am here now but is it enough? I am limited. I still have so many restrictions. I am getting better but its up and down. And we are always aware of how sick I can get suddenly.
I also feel incredible joy to do the things that I wasn’t able to do last year. Or even 3 months ago. I can drive, most of the time. I can do laundry, watch the kids, make simple meals and take a weekend trip with the family. I’m so excited to start work soon. I will be working as SLP two days a week at one school. We are finding our normal and it feels great.
The most recent album I purchased on iTunes is Emeli Sande. This video and song are empowering: