Monthly Archives: July 2012
Saturday morning we got to downtown Columbus by 8:30 am for the Be The One Run to benefit the Be The Match foundation that coordinates bone marrow donors and transplants for patients. Jeffrey found the parking garage and put me in the wheelchair. I had no idea that the wheelchair he borrowed from work was teal green and I was wearing a teal green dress. What kind of crazy person matches her dress to her wheelchair? I also wore a big floppy hat that looked out of place until the sun came out from behind the clouds. Some of our group parked with us and we walked (wheeled) the city streets to the race registration. It’s slightly horrifying to be at a leukemia/lymphoma event in a wheelchair and wearing a mask. I tried to avoid eye contact with people because I didn’t want to see the sympathy or encouraging smiles on their faces. We have not been to Bicentennial Park yet and it is beautiful. The race organizers recognized us from the website and gave instructions for when Xander and Amira would be announcing the start of the race. The kids ran around while we waited. In all our team had 16 members. Some of Amira’s friends from dance and her BFF ran the tot trot with her. Xander had a friend from school and 4H join him in the 1K and a few of my dearest friends did the 5K with Jeffrey.
Our team, named Breaking Blood, raised a total of $1,125 and finished the race with 3 1st place finishes. This was Jeffrey’s first race in the Master’s category and he somehow managed to pull in a a 1st place finish in his age category even though he hasn’t trained in months. We also had the 1st place for 12 and under and age 13-19 on our team. Our speedy young 14 year old placed 7th overall.
It felt great to be outside and this was my first public appearance (other than the hospital) since before diagnosis. I can go out if I have the strength and if I wear a mask but I haven’t really had time or felt up to it yet. I had energy and felt good all day yesterday and today I rested. The race photographer has published a preview of pics that I plan on ordering as soon as they are available. Photo credits to Yarrington Studio
Things are getting way too serious around here so I’m throwing in a fun post. I special ordered my breakfast in the hospital because the off the menu items were awful. I ordered a toasted bagel with a turkey sausage patty and a slice of cheese.
Toasting a bagel and cooking a sausage patty in the morning at home is more than I can do right now so Jeffrey got some pre-made frozen breakfast sandwiches from the store. First up was Bob Evans sausage and cheese sandwiches. These are pork sausage not turkey and two tiny sandwiches (1 serving) are a surprising 310 calories. All you do it take them out of the package and put them in the microwave. You’d think the bun would get either hard or soggy but they have perfected the chemical composition of this bread to withstand a freezer and a microwave. I’m sure that there are carcinogenic ingredients but I’ve eaten “clean” most of my adult life and got cancer. Twice. I’m not afraid of GMO and preservatives.
These tasted good but they are tiny and the bun is boring and they are high calorie. Xander says they are chewy.
The last one I tried was the Jimmy Dean turkey sausage croissants. These sandwiches are the same size as the hospital bagel sandwiches. They have turkey sausage, cheese, egg whites and are on a croissant! Delicious! The directions have you defrost in the microwave and then cook on high for 50 seconds. Again, these have been chemically engineered to exit the microwave in perfect constitution. The croissant is soft. The cheese melted and the meat and egg cooked through but not hard. They also taste really good. Even with chemo stomach. I don’t know how much Jeffrey paid for these at the grocery but until I’m strong enough to make my own breakfast these are the winner.
It’s nice to be home and I’m enjoying my 3 day break from the hospital. We are due back Monday but I have the weekend off. I’m feeling the effects of the chemo but nothing too severe. I’m super tired. Like haven’t slept in days tired. And I’m queasy most of the time. I have good drugs for the queasy stomach that help me eat. I fight the tired just enough to get some exercise in. Today I did a load of laundry start to finish all by myself and walked to the end of the driveway twice. Don’t laugh at me. I have a long driveway.
I’ve posted about this on facebook but for those who just follow my blog I will post about it here. Jeffrey, Alexander and Amira will be running in the Be The One Run in Columbus on Saturday. They have a team of friends who are joining them. The team name is Breaking Blood and includes several children running. The goal of this organization is to raise money for blood and bone marrow matching services and raise awareness of the need for bone marrow donors. It costs $100 to process each new bone marrow registrant and so far we have raised $575 as a team. I am currently being matched with potential donors in case a bone marrow transplant becomes the best option for me.
Our website: LINK
In addition to this the Be The One Run Columbus organization have asked Xander and Amira to do the countdown to the start of the race on Saturday. They came across our team website and said they like to involve as many patient participants as possible. With chemo all this week I don’t know how I will be feeling Saturday but I’m planning on attending with a wheelchair, a mask and a pocket full of pills. The doctor approved my attendance under these stipulations. Xander is running the 1K and he is practicing by running at home and at the park. He ran one mile one day this week. Amira is running the tot trot and since she is constantly running around we consider that her practice.
My Monday trip to OSU for chemo and doctor visit turned into a 2 night stay at the James. My central line sprung a leak during chemo infusion which sent nurses scurrying and doctors running. I then developed a low grade fever that they feared was related to the open central line. We were in the clinic until about 10:30 when we were moved back to our beloved 10th floor. Different room since our old one was taken but same staff. Everyone was both happy and sad to see us. We were only home for 4 days before coming back. I had to wait all day Tuesday to get my line replaced so Jeffrey worked while I watched HBO and slept. By the time I got my line in and received the chemo that I missed the day before it was 10:30 pm so they just decided to keep me over since I was supposed to be back by 9:30 in the morning. Today I got my chemo and saw the doctors and was out of there by 12:30. We go back in tomorrow for another bag of chemo and hopefully that will complete our week of treatments.
I came home to my hair in the mail! This totally makes my week. I love my Hat With Hair. I’m so thankful for the family and friends who made this possible. I wasn’t going to spend the money on my own since it’s a splurge to use my own hair but I’m so happy for the contributions that made it possible. It’s the perfect length and color and texture because it is MY hair. It’s also very comfortable compared to a full wig. Jon is going to need to trim the bangs and style it a little but it’s not bad even now!
We got to The James this morning at 9:30. The waiting room was full of people just like me. Sick people with masks and wristbands. I think we should make the well people all wear masks and let us get oxygen. It’s hard to breathe with those things on. We are on the same floor that we visited to watch fireworks. The view of downtown is great. This is my day: Bloodwork, wait, nurse, wait, nurse practitioner, wait, Wendy’s for lunch, wait, Doctor, wait, switch rooms, wait, LP and chemo, lay flat for 1 hour.
Dr. Vasu is really smart. She talked to us for a long time and gave some answers to a lot of questions and some information that we hadn’t even thought about. She gave us homework to read about bone marrow transplant. I know we’ve talked about it but I haven’t researched what all is involved and what the risks are. The team of doctors has not decided if transplant is the best option for me. There are no statistics on my clinical trial chemo regimen vs transplant in adults for long term survival. My risk factors are my age and my high white blood cell count at admission. But I responded well to chemo and had early remission. Chemo might be enough. Might.
While reading I accidentally read my statistic. I’m sure most of you have googled ALL and you all know my statistics but I didn’t want to know. I have not googled my disease. I have not googled my treatment. I’m not sure why the number bothers me. Statistics become meaningless after awhile. I had a .2% chance of getting breast cancer. I had a .7% chance of getting leukemia. I got both of them. In the same year. I had a math geek friend do some numbers for me. The odds of getting both in the same year are 18 in a Billion.
View of Downtown Cbus from 11 th floor James on a dreary day.
My amazing husband working while taking care of me on chemo day. Someone should give him an award. I’m not being sarcastic. For real.
I’m still hiding out at home since I don’t have the strength to go anywhere. I take most of my fluids in the form of popsicles and I wrap myself in a blanket in between hot flashes while I watch HBO Go on my ipad. I’m looking super cancery these days and I feel like isolating myself because of it. I know that would not be good for me. Jeffrey and the kids run circles around me while I move in slow motion attempting to complete small activities. My incapacities are more apparent at home where there are fewer people taking care of me and more that I want to do independently. My muscles are weak and I am tired from the chemo. I’ve had some new side effects start including numbness in my hands and feet. They asked me about this in the hospital but I didn’t feel it until today. I still have persistent pain in my neck and shoulders. I don’t know if it’s from the spinal or the intrathecal chemo but it’s difficult to get comfortable. The most disturbing side effect right now and the reason my appearance is so altered is the facial swelling from the prednisone. I’m so puffy that I’m unrecognizable to myself in the mirror. The bald head doesn’t bother me as much as the round face. I don’t feel like myself and my appearance contributes to that feeling. Sometimes it feels like I’m living someone else’s life. Suddenly I am consumed by cancer. Again. It would be nice if I could take a little break. Like maybe one weekend day a month I could be “normal” and go shopping and out to lunch. I’m being fairly reasonable in my requests here. Too bad that cancer does not listen to reason.
Since being home I’ve had more time to think. I’ve been able to be off pain meds enough to clear my head. This does not go well with my usual plan of avoiding reality. The truth is that this disease sucks. I’m starting to process that I’m going to be sick for a very long time. Possibly years. And the cure for my disease quite possibly could cause other long term damage to my body. This is where the emotional part comes in. Everything I had planned. Anything that I wanted or needed to do is on hold and it’s out of my control. It is heartbreaking to watch your goals and desires be taken from you. When we were dealing with the breast cancer I never felt sorry for myself. I had my breasts removed and I just went with it and I didn’t feel ugly or sad and I never even grieved the loss like they said I would. I’m feeling it this time. I’m feeling the loss of choice and independence and control over my own life.
Jeffrey grilled some chicken outside for dinner tonight. Of course, he made it in mass quantities because if he cooks he plans on eating it for a week. It was good though and we sat down to dinner together. We didn’t have sister because she went to a sleepover so dinner was quiet and peaceful for a change and we were able to listen to Xander a bit. He noted that it has been a long time since we have sat down as a family for dinner. We usually do our evening meal as a family everyday even if it’s just 20 minutes. When I was in the hospital I think it was fend for yourself or they ate with the grandparents and since I’ve been home it’s been too uncomfortable to sit at the table. But, I’m going to try like hell to get our family dinner time back together. Even if we aren’t all eating the same meal and Amira spends most of the time complaining about something I think that 20 minutes of togetherness is important to the kids. I want to protect them from feeling the same changes I have felt. I want to keep things as consistent as possible for them. It sucks for them that they have to have a sick mom. But the important thing is that for now I get to see them every day. Amira told me that me being home is her favorite thing.
Dr. Vasu called yesterday afternoon with news from my bone marrow biopsy. There were no leukemia cells present in the sample. This means my induction phase of chemo was successful that I am able to move past the induction phase and into the consolidation phase. The goal of consolidation is to destroy any remaining leukemia cells to prevent relapse. In my course of treatment the consolidation seems just as intense as the induction but I’ll be doing it outpatient instead of inpatient. Phase 2 starts Monday morning at OSU and will include a lumbar puncture with intrathecal (injected into the spine) meds and two other chemo meds given by IV. They will probably also run labs and I’ll see the doctor. It will likely be a long day. On Tuesday, Wednesday and Thursday I also go in for shorter appointments just to get a shot. I don’t know what the shot is but I’m hoping for something fruity with vodka.
I’ve been home a couple days now and I’ve been doing okay with lots of assistance. I move around between my bed, the recliner and the couch. I make it to the kitchen for snacks frequently also. My appetite has been good and my mother-in-law has been checking in on me and bringing me food. My weight is still down but it’s mostly muscle loss so I hope to get it back when I start physical therapy. I’ve always been an athletic person so it is disturbing to me to look down and see chicken legs. Jeffrey actually said I look scrawny.
It hasn’t been quite as bad this time but I’ve had the ache and stiffness from the last spinal. I was sent home with the same prescriptions I had in the hospital and similar to with the nurses I have to ask for pain and nausea meds. Jeffrey has complete control of the meds. He’s got them coded and organized and has a spreadsheet for tracking use. He even has an ipad app with reminders set. I probably need it with my chemo brain but I feel pretty helpless.
It’s hard to be excited for the good news for long because it always seems to be followed up by something bad. I got a call today from the transplant coordinator at the hospital. My brothers are both only half matches and will not be able to donate bone marrow to me for transplant. I must have sounded pitiful because just a little bit later she called back after scanning the registry for potential donors. She told me that there are several potential donors already present on the registry and they will pursue those as matches for me. My cure is in the bones of a stranger.
These people deserve a medal or at least some donuts. LOVE them all!
This is just to celebrate the last projected induction chemo dose. If bone marrow comes back with disease on Friday then I will be re-admitted for 2 more weeks of induction. If no disease is found then I continue with the consolidation phase of chemo which will start Monday or Tuesday. But, you have to celebrate the small stuff!
Monday mornings are always busy times in the hospital. The doctors and nurses and specialists descend upon the room early and often to start making rounds and decisions and changes to treatments and medications. My old and most recent roomie, Bria, had the privilege of spending the last few nights in the hospital with me. We stayed up late talking and watching dumb movies until I inevitably fell asleep in the middle of a sentence. It was a blessing to have a friend here just for me although I feel guilt that all she saw of Columbus was my hospital, a friend’s house where she took showers and then came back to sit with me. She claims this is world’s most comfortable reclining bed and I’d have to trust her since she was always still passed out asleep while I was enjoying my now famous hospital breakfast that I’m already craving at 11:45 pm.
So, she made her way home today but the joy brought with her will stay. I was still on bedrest when she got here but before she left today she walked me down the hall to a bank of windows that I have not seen out without being in a bed. My Dad is headed back to to Tucson bright and early tomorrow morning too. He has been a fantastic help here not just for me but for Jeffrey and the kids and has given the other grandparents reprieve from the caregiving. Grandpa Carter has done his best to get those kids into shape with organizing a cleaning of the basement and my car and insisting that they do things like put their dishes away when they are done. It’s like I’ve been raising cave children! They love him for the football on the trampoline game and the air hockey and the snuggles on the couch with movies. I feel immensely troubled that my children have to have a sick mom but these bonding experiences with other caregivers have proven to be very valuable. I dare say that they might do a better job than myself. My dad and Jeffrey took me outside today for the first time in close to 2 weeks to the front entrance by the fountains. I was less chained to lines but still covered by a mask. I wore a fashionable scarf and fedora with my gold Sperry’s. I keep trying.
I am now fully unhooked from hospital equipment. My IV was unhooked yesterday since I am receiving adequate fluids orally and they are discontinuing the IV antibiotics. I was hooked to the IV briefly this afternoon to receive a transfusion of cryoprecipitate in preparation for tomorrows procedures. I’m trying not to think about it but I am getting a lumbar puncture with chemo injected into the CNS followed by a bone marrow aspiration and biopsy. I’m asking for extra drugs this time. The spinal headache from the last LP was miserable and lasted more than a week and I don’t know if people ever get used to big ass needles coring into their hipbones. It was originally suggested that I go home Tuesday but with all this going on we want to make sure I don’t get another headache and we’d also like to hear preliminary results from the bone marrow. This is the only way to test and get an answer on progress. They are looking for B-cell blasts (cancer) in the bone marrow. This tells them if I am in remission or not. If you all remember, I was clean according to the second bone marrow biopsy but that was after a dose of vincristine. They have not been able to continue that chemo med because of my autonomic neuropathy that has resulted in a severe orthostatic heart rate and caused all kinds of trouble. The results of the bone marrow biopsy tomorrow will determine if I continue the induction (intense) phase of chemo or if I move onto the consolidation phase. Just waiting.
The plan is to go home Wednesday now if everything goes well. They guys started cleaning out my room since it’s become very home like. Once I go home the intense schedule continues. Even though I can’t drive I will need to be at the hospital 3-5 days a week for the first couple of weeks for labs and chemo and appointments. I have follow ups with the audiologist and with the voice and dysphagia clinic for a FEES. Maybe after that it will settle into a once or twice a week routine. I will still be highly dependent on childcare and Jeffrey to drive me.
Pic outside with my dad. Paranoid Jeffrey wouldn’t let me take off my mask. It’s okay though, I have a massive moonface from the prednisone.
There is an African proverb referring to childbirth that I remember from my times of fear surrounding bringing my children into the world. It says, “Being pregnant and giving birth are like crossing a narrow bridge. People can accompany you to the bridge. They can greet you on the other side. But you walk that bridge alone.” This applies also to my current health situation. So much of this i have to do alone. There is no one to take the burden from me as much as they can hold my hand and stand next to me I still have to do this. At first this thought is frightening and isolating. This task is mine but how much is actually in my control? I suspect not much. The passivity of being a patient with a serious illness can be frustrating and confusing if you let it or you can let it ride. This time I am choosing to look at each day because there are too many variables and unknowns to worry about everything. I’m not going online and researching. I’m reading only the information that is given to me by my doctors. And since I see the team daily I just ask questions directly instead of trying to Wiki.
Since the cardiologists and endocrinologists and nephrologist and oncologists have agreed that my orthostatic tachycardia is a result of the autonomic neuropathy due to the chemo side effects we have started medications called beta-blockers to lower my heart rate. Of course, they started several med changes at once so now they are narrowing down dosages to find the best combination. Progress so far is that my standing heart rate has gone from averaging in the 170s to now its in the 150s. I was able to take a walk around the “unit” yesterday and today. Jeffrey kept a death grip on my arm the whole time for fear of me falling but I stayed upright on my legs for two laps around. We followed this adventure with a wheelchair ride off the floor to the cafeteria. It still requires a huge production to get me mobile but once the chair is located and IV pumps moved and wires secured we were off. Bria was a nervous wreck driving the chair so my dad took it over like a pro. Since I’m on a tele monitor I’m not technically allowed to leave the floor but most nurses agree that they just don’t want to see me leave and we always come back in a reasonable amount of time. It cannot be underestimated how good it is to get away from looking at these 4 walls. To help with the “sick person” vibe I have been giving off I have worn my purple wig and neon striped knee high socks for our adventures. Somehow standing out makes me feel more like a person.
This paragraph may get a little nerdy here but it’s a part where my personal and professional life intersect. This autonomic neuropathy seems to be affecting my Vagus nerve CN X. Please weigh in speechies if you have thoughts but my phonation has been breathy and hoarse and progressively worse since the chemo. An ENT stopped by to scope as I mentioned before and he did put incomplete vocal fold closure in his notes and referred to speech therapy again. She stopped by and we talked about vocal exercises and visiting the voice clinic upon discharge. She asked about the swallowing but I was still in denial. But today, After difficulty swallowing pills, coughing on thin liquids, wet vocal quality and difficulty clearing pharyngeal status we had speech come back. She spared me the modified barium swallowing study but did say if I was older or a different person she would have my diet changed to thickened liquids and would want to see more of the physiology of the swallow. So, it’s really up to me now to follow my own rules and use a double swallow after solids alternating with small sips of liquids. I can try pills in pudding, tapioca pudding just to make me feel even older, but I really hope I don’t have to crush them BLEH!
I really am feeling contented this evening and I feel at peace. These moments are not frequent but they happen. The 3 hour pedicure that Bria gave me this morning was also a contributing factor!
Don’t forget our Driving Ms Daisy moment. Not sure what kind of trouble we could get into at a hospital but I sure was going to try to with purple hair and shameless t-shirt.