Monthly Archives: May 2013
This week was an attempt to do some normal things. I’ve been on prednisone for a few weeks now to try to treat my GVHD that flaired up in my GI tract and a bit on my skin. So far my reaction to GVHD has been very mild. I could have easily ignored the symptoms and not reported to the doctor but they have drilled into my head to not ignore anything and the smallest sign of infection or grafting reaction has to be treated immediately. It’s so much easier to treat it early rather than try to catch up later. Our stand-in doc while the main doc is on maternity leave explained it at our visit yesterday but I wasn’t really listening. Ask my endlessly supportive husband who could be a hematologist by now. Essentially the graft vs host disease reaction grows exponentially if allowed to proliferate. They don’t want to over-treat because the medications that I have been taking have significant side effects and possible long-term consequences. An attempt to lower my dosages resulted in my current GI outbreak so they are going slow on reducing my Prednisone. It’s a balance. I have been eating really well since starting steroids and I just have a small amount of edema in my feet, ankles, belly and cheeks. Appointments are once a week for check-ups and testing. This week we spent just 6 hours at the hospital with a break for lunch with a friend. I had to do a pulmonary function test first to measure possible lung damage from radiation. Results are still pending.
In celebration of life and family and bourgeois weekend things to do we drove to Easton today to do a little shopping. We are on a limited budget since cancer costs a shitton but the kids wanted to go to the bookstore and I wanted to look at shoes. To be able to do this activity shows extreme progress on my healing from even a few weeks ago. Simply going to a store is an exertion but an important part of my rehab. Some of my mom friends generously contributed to a 100 day present of a $100 gift card to DSW. They also gifted me snacks and spending cards to Target, Starbucks and Chipotle. I splurged this week on make-up and skincare at Target already. We have indefinitely delayed our German bone marrow theme party because of my setbacks and my desire to celebrate when I’ve actually made progress.
Jeffrey is somehow into taking me shopping so the whole family went to look for shoes. This trip is so close to things we used to do that I wasn’t even annoyed by them joining. They pop along behind me at the store tripping me up and suggesting I try on ugly shoes. They hover and tangle underfoot and then wander off when I finally wave them away with no communication of where they are going. I had no specific idea of shoes I wanted but I started with dress shoes and wandered through casual and sneakers. I’ve had an eye out for a good pair of nude patent leather wedges with a covered heel. I don’t want a wood or cork or espadrilles heel. I have a great pair of nude heels but I’m at an in-between stage right now where I can wear a more stable heel but I’m not quite strong enough for stilettos. The truth is that all I do these days is take the kids for a walk around the neighborhood, go to the hospital and go to the gym. Practicality would say that I pick up a new pair of sneakers with my money since that is what I could use daily. Of course, with me and shoe shopping, I’m not that practical. Jeffrey encouraged me to consider it gift money and buy something I wanted but don’t “need”.
I ended up purchasing the first shoes I tried on. They caught my eye and fit like a dream. They are good quality and comfortable for my current footwear needs while still being somewhat tacky and over-the-top enough to be fun. Introducing the Taryn Rose wedge:
They are coral AND snakeskin WITH a gold shimmer pattern. Jeff says this comfortable brand is one step closer to geriatric shoes but I’m ignoring his comments.
Amira was a great shoe shopper. She found my size in the rows of boxes and packed shoes up when I was done trying. I forgot how small she is because at the end of our trip Daddy picked her up and her face brightened into surprise when she saw over the racks to the mass square footage of just shoes. She desperately wanted a neon pink purse but we told her to save her allowance.
Epic shoe shoppers
The gifts keep on giving this week when I got a surprise drop-by with a box of cupcakes from a friend. I accepted them gladly. I know people see us struggling just to try to maintain normal and they desperately want to help in some way but don’t know how. There are large gestures such as the aunts who pay for housekeeping, friends and relatives who flew out to help even though I was barely able to function and communicate appropriately, friends who gave us a place to live. There are amazing meals that people cook with so much food that I freeze for lunches and people who drive me here and there without a word. I will tell you all now that the little things make a difference. A card on my wall, a kind word or note, cookies on my doorstep, a foot massage or visit at the hospital, a lunch out, these things make me feel loved and supported. We are not alone all the time. If you want to support cancer research that is good too but to make a difference for someone you know remember these things. We won’t ask for help because that is so hard to do but I have learned to accept .
Some of you may know that I participated in the Komen Race for the Cure yesterday in downtown Columbus. It is a big event with 40,000 people in attendance. Most of you know that I am not a fan of the Komen organization for many reasons. It mostly has to do with the allocation of funds for “awareness” instead of research into cures for disease and especially breast cancer that has spread and will kill, metastatic disease. The commercialization of a non-profit organization and distribution of “pink” merchandise is also offensive to me. I don’t like the pink, cheerful, celebration of a disease that can be devastatingly horrible and life changing but may just be a slow threat that needs to be treated. I have written on this subject before. Here
Be sure to check out think before you pink. Pinkwasher: (pink’-wah-sher) noun. A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease.
Since doctors don’t know how to predict which cancers will kill yet they just treat all with the assumption that all will kill. My question then becomes what are we celebrating when we laud the survivors? Great job getting the kind of breast cancer that doesn’t kill you? For now? Cause its all a big question without a good answer. Sometimes people get cancer and it goes undetected and untreated for years. Sometimes people get cancer and it goes away with treatment. Sometimes the cancer spreads and the treatment holds it off for awhile but it’s too much and the person dies. We have very little control over this. So what makes a “survivor”? Is it enough to just not die from cancer? Going through something scary and physically taxing and then being able to run 3.1 miles? What do we do with the woman who has stage IV metastatic breast cancer? She’s not going to survive and this party is not for her. She hopes to have a few years left but it’s uncertain.
Komen’s goal is to raise awareness and detect these diseases before they get to this point. Some talk about early detection or “feel the boobies” and it’s cousin “save the tatas” but the fact is that early detection doesn’t save your precious twin girls. If the cancer is enough to be seen on a mammogram or felt during an exam then you still have cancer and you will be losing a good part of that boob or even a whole tata or two. The point is that maybe early detection could save your life. However, in spite of increased awareness and increased screening breast cancer deaths have not decreased. Read Here
Early detection and treatment is not an accurate measurement who will go on to have metastatic breast disease. Your survival attitude and will to live do not guarantee remission. Not all cancers are terrible though. Some are easy. My breast cancer was relatively easy and as it turned out I was not facing a real threat of death especially since I aggressively and possibly over-treated it. I don’t understand these survival celebrations for that reason. What are we celebrating? It’s like an exclusive club of smiling pink teary-eyed cheerleaders. We are the survivors! But some of us won’t survive and I don’t believe it has anything to do with our character or how much we prayed or didn’t pray or how hard we worked. “Fighting” cancer has been one of the most passive activities for me. Things happen to me and around me but all I could do was try to get up, try to eat and keep moving forward doing the next thing. I no longer worry about what ifs. There are too many to manage. I just do each day.
I know I’m in the minority with my anti-establishment attitude but I’ve never liked being inscribed into any kind of organization to which I do not fully identify. I do not glean empowerment from the affirmation and attention of crowds. People go to Komen for different reasons. I was in it for the walk downtown with friends and the swag. I truly do have an amazing support system of friends and family for whom I am extremely grateful. The friend that took me has been going through her own issues but has been a wonderful support. She encouraged me to allow her to push me in the wheelchair for the 5K run/walk and then once we got to the survivor lane another friend ran out to meet me and we walked to end together. It was sweet and I had a good day. I’ll just leave it at that.
I have been documenting with pictures all along but here is one side by side showing progress. The picture on the left is me at home but I remember how difficult it was to stand long enough to take my picture. I usually keep my “ugly” pictures hidden but I’m being brave enough today.
I’ve had more adventure and fun this week already. I was admitted to the hospital for a GI work-up. I’ve been having some belly issues like cramping, bloating and nausea. It could be from all the meds I’ve been on. It could be irritation from radiation or just eating like crap. But there is also the possibility of recurrence of c.diff and scary things like GVHD. Of course I’m in denial about GVHD but I went along with their game. But keep in mind that I still suspected I just had Mono even after being admitted and examined by multiple highly trained hemotology and leukemia specialists. It’s not that I’m a positive person. I’m really not. I’m just always positive that I’m fine. Even when I’m not fine.
My doctors let me out in time last night to make it to Amira’s kindergarten musical. It’s like High School Musical except the girls wear big flowery dresses and sing about the three little pigs. It was thrilling to be there even though I was wearing a mask and hospital bracelets that I forgot to take off and I had track marks up my arm from the PCA in training. Seriously, why do they let them practice on the cancer patients at 5:00 am?
Here is my Madonna “Like a Virgin” glove. My 27 year old nurse did not get my reference.
When I was admitted I informed the staff that I wanted to make it out for Tuesday evening. I never make requests like that. I always just go along with hospital time. They furrowed their brow, looked doubtful but then did everything they could. I was admitted because my doctors have suspected possible GVHD of the gut for months and they wanted to rule it out. Outpatients have to wait weeks for endoscopy so I was admitted to get bumped in line. Unfortunately (this is one of those words I spell differently every single time), according to hospital code scheduled outpatient appointments bump inpatient requests so sometimes inpatients have to wait days for tests. But not me this time. My doctors said in all seriousness to the other departments that I had a kindergarten program to get to because my daughter had a speaking part. I got to cut in line for my procedures. A nurse and secretary in endo came in to tell the doctor before my procedure that there were outpatients ahead of me and he said, “No, She has somewhere important to be tonight so she goes first.” I’m so glad such a great doctor advocated for me. I also got to be home last night and this morning for Xander to bring me his favorite teddy bear and my sewing kit so that I can stitch up a hole in its back. He has way more confidence in my mom skills than I do.
So, while I was still waiting for my procedure to be scheduled my nurse came in to tell me the “good news and bad news”. Good news is I was getting in quickly for my colonoscopy. Bad news is that “WE have to do an enema.” I said, “We?”. I wasn’t sure if he would be joining me on the pot or what. But by we he meant he did the enema part and I did the pooping part. At least he was cute. And young. You all know there were MANY anal jokes including both kinds of dirty, if you know what I mean. I didn’t even get to see my main doctor yesterday because every time he came in I was on the pot. Cute boy nurse gave me a hospital gown to cover myself after he removed my leopard print lacie cheeky undies. I’m so sad that I left that pair in my linens at the hospital. I called and they said they would check the lost and found. Even more than I want those undies back I would love for someone to collect them in a ziplock and deliver them to the 11th floor. That would just be funny.
This is a bathroom paper towel dispenser reflection selfie taken to show my morning after smeared eyeliner and sad eyes.
I got visits from some of my favorite nurses including my beloved 10th floor lady who had to break the news to us back in June that I would be in the hospital for a long time. I love them all. There is a new kind of intimacy and affection for people who take care of you in your worst state for 12 hour shifts at a time. I feel like it’s friendship although I’m not sure they would join me for wings.
To share today here is a funny video that makes me happy my husband has no audio-visual skills.
There are so many new and exciting things happening around here that I haven’t taken the time to post. I actually have plenty of time but I’m too busy watching Let’s Make a Deal and resting my super painful fractured rib. I also still have a slight cough but I’m trying to get out to the gym and out walking anyway.
One of the big events is the discovery of a new cookie. It’s the Oreo Triple Double. I’ve put on 2 lbs but the doctor would still like me closer to my baseline weight so I’m trying to eat. Unfortunately, I still have a small stomach and don’t always make the best food choices.
It’s a triple decker cookie with chocolate AND vanilla filling.
Second big event is that I had my central line removed on Thursday. The line removal required two doctors. I was not offered premeds so I premedded myself. The only part that hurt was the local anesthesia that burns like fire going into my skin. I chatted with the supervising physician while the dude that looked like a first year dug around in my chest. There is a small piece of cotton type material that anchors the line in place in my skin so that it doesn’t come out easily. For removal they have to loosen it. He had a type of fulcrum device similar to the curette that I use to remove ear wax. Once free of surrounding tissue he began to pull. The line went from the right side of my chest, up over my collar bone and across and down to my heart. He pulled on the line and it came out of my body similar to a clown pulling a line of colorful scarves from his sleeve. They held up the blood covered used trifecta line for me to see. They said no way could I keep it. I asked if I could take a picture at least and they said no because its a liability. These losers are no fun. I didn’t tell them that I have a video of a bone marrow biopsy.
The removal left me with a hole in my chest that looks like I was shot with a .22. It’s gross but I’m still considering posting the picture because its good gross like the cyst popping videos on YouTube. I could watch those for hours. A small, square bandaid is enough to cover it.
Other exciting news is that I fractured a rib during a coughing fit from my bronchitis. For those who have had this you know how incredibly painful it is. It’s a stabbing pain in my upper right rib. I thought it was just a pulled muscle but upon examination my PT became nervous it was a fracture. He was very happy with himself when he heard that his diagnosis was correct.
Because of my progress my doctor has started lowering some of my meds including the anti-rejection drug. With this my risks of developing GVHD are increased. I’ve had a couple skin flair ups that are controlled with steroid cream but there is a good chance I’ll need to go into the hospital for an endoscopy to rule out GVHD of the GI tract. It’s likely I’ll be checking in tomorrow to the James. Hopefully it won’t be more than a couple days.
Jeffrey has been wanting to get us a dog since we lost the Arizona born mutt that we inherited from my mom. We filled out an application that was significantly more intensive than anything necessary to bring home a baby. One visit to the shelter later and we brought home a big baby named Griffon who seems to be a confiscated coon hunting dog from the mountains of West Virginia. This sweet boy already brings Xander his leash to go outside and has apologized to Amira for accidentally knocking her over by bringing her the fetch ball since that’s what she likes to do best of all. He’s my sleeping buddy during the day and the only trouble he has caused is that he may think our old grumpy cat is a raccoon. We are working on breaking him of that.
Playing Tug of War with the boy
At the shelter picking him up.