Necrosis and other news
I haven’t been blogging cause I’ve been busy enjoying life. In spite of all the complications (hold on, there are many) we have been happy and doing our thing as a family. Please don’t ask us what that is more than a day or so before the event occurs though because we may not know what you are talking about. And we change our minds all the time because we never really made up our minds in the first place. We know that in a second our well made plans can be gone. We all know that. We intellectualize it. But have you felt it? Always lurking. I try not to look for it or wait for it but sometimes it hits me and takes my breath away. The gravity of what has happened to me and what I have gone through makes me gasp for breath momentarily on the freeway or one tear will fall before I wipe it away and keep going.
There is a new Netflix series that with the addition of House of Cards may start to enter HBO land. Ok, maybe Showtime but I like this new show “Orange is the New Black”. The premise is a lady, engaged to be married to a nice guy with money but is connected with a crime that was committed 10 years prior. She turns herself in and goes to prison. She is made to sit with the small white group at lunch but is assured that it’s a tribal thing not a racist thing. I won’t spoil more than that but there is a notable reference from the resident Yogi. She begins talking about a Mandala. The Buddhist spiritual art piece created and used as an aid in meditation. Jones, the Yogi, says to the terrified new girl, Chapman, “The Tibetan monks make them out of dyed sand layed out into big beautiful designs and when they are done after days or weeks of work they wipe it all away. Try to look at your experience here as a Mandala. Work hard to make something as meaningful and beautiful as you can and when you are done pack it in and know that it was all temporary. You have to remember that. It’s all temporary. I’m telling you that surviving here, is all about perspective.”
Not that I spend a lot of time deriving meaning from pop culture but the parallels are obvious. Having a close friend whose sister is in prison also does not make me an expert on women’s incarceration either but I received a card from the ladies who are friends with this sister and who are in prison with her. This was early on and their words carried more meaning to me than most. They understood getting by and surviving. It didn’t matter to me if they “did it” or “didn’t do it”. Just like in cancer class we don’t sit around introducing ourselves by saying, “lung cancer, but I smoked for 30 years.” “Well, I ate organic all my life and this is my second cancer”. It doesn’t even matter. We take people as they are. There are no qualifications for life experience. That level of acceptance and encouragement is not missed by those who get it. I have that card and all the others. My friend B helped me sort them from one box to another but I’m not sure what to do with them. I don’t even have my wedding cards.
Back to the Necrosis and how I’m doing. As you all can tell I’ve been avoiding the subject. It kinda sucks. No, it really sucks but I’m trying to keep perspective. In my world it can always be worse. I’m not in the hospital. I am home with my family and I love it. I find joy in the everyday. I’m so happy to be able to make dinner and pack their lunches and play a game and snuggle and watch TV while doing our nails. I run errands when I can and it makes me happy to do the things that previously in my old life seemed like a chore or obligation. I take the kids to daycamp. I take myself to physical therapy and to cancer exercise class. My body is not getting stronger. I am still limited but I would be so much worse without these programs. I find joy in the mundane because I feel lucky to be able to be here. I am seeing friends and family and they don’t care that the steroids have turned my face unrecognizable. I get to see new babies and go to lunch and catch up with all my favorite people. Jeffrey and I attended a beautiful wedding in Cincinnati and got 24 hours to ourselves to see old and new friends. I wore a beautiful dress and jewelry and might have overdid it on the steps but it was worth it and I’d do it again. I want to talk about all these things because we are doing well. And I am getting better. If last summer hadn’t happened then I would say that the Prednisone that I’m taking now has ruined my summer. But I have the perspective of spending last summer inpatient in the hospital so I know that this summer is still good. I am home. I am back to needing rides and trialing new medications but I am doing things and I am happy and at peace most of the time.
Back to the necrosis. The meaning of this word is death of tissue. I may have that. Specifically, Avascular Necrosis. It will take an MRI and testing to know for sure but since I’m still on the taper down of the steroid and other medications there is no hurry to rush into a diagnosis. There is nothing to be done or change right now. I know some people want to get in there and know right away but I have become used to the not knowing. There are never definitive answers anyway. I have significant swelling, pain and stiffness in my hip joints. I also had it in my knees and ankles for a bit but it’s mostly in my hips now. I have an achy swollen soreness all the time and I’m now on scheduled pain medication. I also am using a cane for walking even though this is an intimidating experience that I avoided. I was finally convinced after we took the kids to the Doo Dah Parade and I used a big umbrella for walking. It gave me stability and took some of the weight off my hips and I walked the 3/4 mile with ease. I ordered a folding metallic purple cane and I use it when I go out. I’ve found that people are really nice to the young mom with two kids and a cane. I’m horrified by the attention but it allows me to do the things that I would hesitate to do otherwise and it makes it safer for me to get out and about. I may get a nicer one if I keep this up. Next up is handicap stickers for the car! I wish I were joking.
The doctors feel I have Avascular Necrosis of my hips as a result of radiation and long term steroid use. However, it is so important to treat the possible and confirmed GVHD in my body I have to continue with these drugs that are causing permanent however relatively superficial damage to my body. I need to go through some somewhat invasive viral testing to rule out hidden weirdness that I don’t really understand. I’ll get there when I get there. My doctor has a 15 page resume of awesomeness and I have learned not to argue with her. She has seen so much. She feels that there is some GVHD lurking somewhere. It’s hiding or waiting and the steroids are keeping it back. If you taper off the meds too fast that GVHD could flair up and present itself in all sorts of horrible and terrifying ways that could kill me. It is my biggest risk post transplant and we all take it very seriously. I have to stay out of the sun and heat. I wear physical sunblock in the form of lotion on my face and/or a cardigan daily on my arms. I get a rash from wearing pants so I wear skirts and dresses to be more comfortable. Much to Jeffrey’s credit card dismay I’ve been buying the cute long skirts and dresses I can find at Target and Forever 21 and Gap just so I can stay cool (literally). So far I have kept the skin GVHD away but I have to be careful everyday. And you all know I love the sun and heat so this is hard. You can google images of what can happen to the skin following transplant but I won’t post them here. I have darkening of the skin from radiation and I look like I have a slight burn or tan all the time. People compliment me on it since I normally have a very fair complexion.
Another perspective to take about the possible, obscure lurking GVHD is that it is actually clinically considered a GOOD thing to have a touch of GVHD coming out of transplant. I needed a logical BFF of remind me of this. She brought up that this hidden GVHD is eating all the possible indiscernible and clandestine rogue leukemia cells that could be in my body. There are actually more favorable outcomes for patients that have a mild, small and controllable amount of GVHD following transplant because the GVHD will attack those hidden leukemias if they are there. It’s a tight balance.
The treatment for Avascular Necrosis of the hips is hip replacement. Yeah, That’s what I said. It was shocking for me to hear and it hit me hard in the doctor’s office. The doctor felt bad immediately and apologized and said she shouldn’t have said anything because we don’t know yet. But she does feel like the hips will be a long term problem that we will need to deal with but it’s something that can be dealt with. It is still to be determined if the hips will improve once the steroids are eliminated and I get to go down on some of my other medications. I think there is still a possibility that it will get better. I currently have pain and stiffness bilaterally.
In other happy news We adopted a new Beagle named Molly. We had to take Griffin back to the shelter because he became wildly protective of our family and showed inappropriate signs of aggression and injured a dear friend. Molly has been just perfect. She is about 20 lbs, purebred Beagle with a mellow temperament yet energy for walks and playing. We got her from Beaglesrus rescue. I’ve been watching this rescue center for a couple years since I grew up with a Beagle and love them. She’s not sure what do to with playful puppy types but she is good with other dogs. We’ve witnessed a few full on Beagle howls and while I don’t want them to become a habit it is very cute to see her howl. Amira planned a 1 year birthday party for Molly and that silly little party turned out to be a lot of fun. We invited just a couple friends cause I was not going to make a big deal out of a dog birthday party.
After party nap but sneaky girl hopped up on the table and stole a piece of ham.
Any given moment you will find these two snuggling somewhere just like this.