Monthly Archives: September 2012
People continue to ask me how the kids are doing with all of this. They are actually doing fine. Aside from the 5 year old attitude and drama we get from Amira and the typical Xander wackiness they are doing great. Better than us. Maybe we make it too easy on them but we’ve tried to keep everything as consistent as possible. There is no doubt they pick up on our stress and anxiety but so far they seem to handle it well. Amira loves kindergarten and has 24 new best friends. Xander is adjusting to the new level of homework expected for 4th grade and is doing quite well on his soccer team. We have explained what is going on to them on their level. Xander wanted more information and details than Amira so I gave him the literature from the doctor to read. He probably understands about as much as I do.
The difference with the kids is they are immediately accepting of my diagnosis. While I question the diagnosis and ask why and wrestle with the unknowns and go back and forth between hope and despair the children steadily believe that mom is sick and is getting medicine to make her better. They just accept that I am sick and sometimes can’t do things. There are no fears and there is no questioning of the unfairness of it all. Mom is sick and will someday be better. I don’t think I’ve sheltered them from the truth. I have a couple children’s books on cancer that they have read and Xander has read everything I have about the disease. They have experience with the ugliness of cancer from my mom and their great grandma. Xander understands more than Sister. When we were first telling them that I have cancer again he asked where it was and I told him it was cancer in my blood and bone marrow. He said, “Yeah, that’s bad because your blood goes everywhere”. But not once has either of them asked why does mommy have cancer or why does our mommy have to be sick and other mommies are healthy. They just accept.
I told Xander before school started that I was sorry that I was sick this summer again after last summer being ruined by breast cancer. He said, “That’s just how summers go”. And I think they had a great summer. While we didn’t get to go on summer vacation they had friends and relatives that took them places and they had a nanny at our house so Xander could have his days at home on the computer and Amira had someone to bake with her. I am letting go of my sadness of not spending the summer with them. They probably would have just annoyed the hell out of me anyway. I am also finding peace in their resilience and faith. They do not even know how strong this will make them.
I wish I could say that I’ve been too busy to keep up with my blog but the truth is that I’ve been in bed since Wednesday evening following my chemo and lumbar puncture. The LP went fine. My spinal fluid was clear and the chemo injected. I didn’t get an immediate spinal headache but I had back, neck and head ache that radiates down my arms and legs. And I’ve been really really tired with shortness of breath when I move around. I would force myself to get up but all I could think about was going back to bed. Not much to blog about there. I’ve been reading and watching TV and practicing spanish on duolingo.com. I’ve had awesome friends come to visit and we lay in our pajamas in bed and watch TV. I love my friends!
I woke up Monday morning still fatigued and with a bit of a headache. I managed to get the kids ready for school. Xander is independent now just needs reminders to move from one step to the next. I got Amira dressed and her hair pulled up into pigtails and checked their lunches. Then I was exhausted and ready to go back to bed at 8:30am. I decided to go ahead and call the hospital clinic to see if how I’ve been feeling is normal for this chemo. They wanted me to come in for blood work so we make an unscheduled trip to the James. They determined that I was dehydrated so I got a liter of fluids while waiting on blood work. I also got a lovely James nap. Blood work showed I was low in all areas I was supposed to be low in but nothing low enough to require a transfusion. Before going home they sent me for a chest x-ray and we still don’t have the results of that.
It’s so very frustrating to suffer this set back since I had been doing better. I felt like I had made progress. I was driving and getting stronger with physical therapy. I may be starting over again with my rehab. I’ve already had my morning nap today so I’m considering proceeding with my plans. I feel like I have to take advantage of the times when I feel well.
Today was my one year follow up breast cancer appointment with Dr Lilly. Everything checked out fine but it seems a little anticlimactic. I miss the days when breast cancer was our biggest worry. Dr Lilly is only seeing new patients and follow-ups see a physician’s assistant but after a call from Dr Vasu he worked us into the schedule. We were scheduled for chemo at the James later I. The morning.
I walked into Dr Lilly’s tranquil spa-like waiting room that was already filled with people. The calming rush of the lobby fountain mixed with the chatter of patients waiting. On long chemo days I just wear a bandana on my head and yoga pants for comfort. I was wearing a full surgical mask in anticipation of a full waiting room. Since this is just a breast surgeon’s office many people are there just for follow-ups and have already been through their journey. Or they have a suspicious lump that needs to be checked but overall the patients are healthy. It’s a very different atmosphere compared to the hematology floor where we all look sick. So, I walk into the lighthearted room looking super cancery and all chatter ceases as they look at me. These patient are all a good 20 years older than me but they are afraid of me. They are afraid of being sick like me. I sit down where there was once conversation and no one spoke for 10 minutes. I make people uncomfortable. They are nervous about their own checkup and in comes their worst nightmare.
We were there to talk to Dr. Lilly about my breast cancer risks as would be associated with total body radiation. A full intensity bone marrow transplant requires several rounds of whole body radiation which increases the risk of other cancers developing. A history of cancer would disqualify me as a candidate for full intensity transplant. However, since my breast cancer was non invasive and my breasts were removed the doctors have determined that I’m at no greater risk and I’m a candidate for transplant.
For now we are continuing with the chemo on phase 3 – the first of the maintenance phase. I get 4 different chemo drugs given over two days with each set being 10 days apart. I still feel queasy most of the time but eating small amounts frequently and avoiding the foods I find most offensive has helped me maintain my weight.
They are starting October early this year at Kroger. It must be a very profitable month for them. Now begins the time that I avoid shopping at Kroger for a month. I’ve written on this topic before as have many, many other breast cancer bloggers who have already said it all and better than I can. If you missed my original post “Breast Cancer is Now Accepting Donations” you can find it here.
Kroger has their pink light bulbs on and their display of useless pink crap you can buy. They prominently display brands that have incorporated a pink logo onto their products packaging. It seems like an agreement between companies that is mutually exploitative. Kroger promotes breast cancer at the store and if a yogurt company (for example) also promotes breast cancer they will get a big pretty display from which they will sell more product. This is how it appears to me. A promotion or celebration of breast cancer. They make it pink and pretty and use the word breast because it is profitable for them. Kroger would not be doing this if they didn’t get something out of it. How about colon cancer month? Would that be as popular? Nope, because it’s not as fun or pretty. The degrading of the seriousness of the disease by covering it in pink tulle is what I find annoying. What I find offensive are the profits that companies make off of using the breast cancer ribbon.
At the check out you are asked if you would like to donate $1 to “help” breast cancer. Jeffrey politely says, “No, thank you” then as an aside to me, “We’ve already donated at least $60,000 to breast cancer”. I ask the cashier what organization the money was going to. She said she didn’t know, just to breast cancer. She asked the manager on duty who was close by and he looked around for a second then said, “uhh, Spielman” He was referring to the Stephanie Spielman Comprehensive Breast Cancer Center which is a part of the OSU James network. He said it with such uncertainty that I had to look it up at home. Nothing on the website mentioned Spielman. I followed up on Monday with a call to the general manager at my Kroger. He was able to explain that nationwide all the money is collected and then divided among the various charities they support including Komen, Speilman and ACS. I told the manager that I felt it was important to display where the money is going and the cashiers should be able to answer that question. I know I’m not going to get them to cancel their pink party but talking about the funding destination is vital.
I could go on and on about the damage Komen has done but so many writers have said it better than me before. I’ll leave you with a few links. Readers, if you have any good blog posts on this subject please post in the comments.
Websites to check out for more information:
This is a pink ribbon under a pink light bulb and the football balloons have pink O’s on them.
This weekend Amira was sick with a fever so I was quarantined away from her. Xander had an appointment that he needed to get to on Friday afternoon so I decided to drive him. I’ve been driving for the last couple weeks or so but not really hauling kids around. I’ve been feeling okay so went ahead and took him. He was a little concerned but I promised him I would not throw up. I swore to him that I would not throw up. Should not have done that. I’ve been feeling queasy but took meds so I thought I’d be fine.
Then I started getting the sweats. I could feel my stomach rejecting the sandwich I ate hours earlier for lunch. Thankfully I made it to a public restroom and away from my poor child before dry heaving. Vincristine sucks and I only had a 50% dose. Xander’s only requests are that he doesn’t want to see my bald head and he doesn’t want to see me throw up. He just wants everything to be normal so I try to give him normal when I can. He asked today how long would I be sick. I really wish I knew what to tell him.
We are all watching and waiting for the possible severe side effect from this drug. So far I am doing okay. My heart rate is normalish although it does spike when I stand and I’m on medication to keep it down. I do feel a little tickle in my larynx area but it’s probably just my imagination.
If the symptoms hold off we will be officially starting the Phase 3 of chemo on Tuesday. This is the beginning of the maintenance phase. I finished induction chemo at the hospital and consolidation chemo last week. The last phase is maintenance and it lasts the longest. This is to keep the leukemia from coming back. We continue this for years because of the high risk of relapse. Phase 3 looks suspiciously like phase 1 in that it uses a lot of the same drugs just spread out 10 days apart instead of 7 days. The transplant is still an option if we decide it is necessary at some point but for now we are continuing with chemo.
I thought maybe I would get a little break. It would be nice to have a couple days where I didn’t feel sick and tired. Of course, I don’t know what I would do with myself. I’m already going crazy at home with the kids at school and nothing to do. I need to get my strength up before starting some small projects that I want to do. Like dump the entire contents of the kids rooms in the trash while they are at school. Or weed the flower beds. The doctors showed horror that I would consider gardening because of the risk of infection from fungus and bacteria in the soil. I’m doing Spanish lessons on Duolingo.com and thinking of other ways to keep busy on the days I don’t go to the hospital.
I broke out the fall wardrobe this week since the evenings are cool. Here I am at Xander’s soccer game.
I attended a class today sponsored by the American Cancer Society called Look Good, Feel Better. It’s designed to help women undergoing chemo learn make-up tips for the changes in our skin and learn how to handle scarves and wigs. The class was located at the James Breast health center and run by volunteers. One volunteer was a licensed hair stylist and make-up artist and the other two volunteers were essentially cheerleaders. I was really just there for the swag as I hear they have major companies donating to these events. I was not disappointed.
Walking in they had the room set up with tables facing each other and set with flowers and cupcakes and make-up. What could be better than that? The volunteers nearly attacked me with their kindness since they all want to be my new best friend since I have cancer and need their help. I accepted a drink but the thought of a cupcake turns my stomach. I haven’t been eating sweets at all since I can’t stomach them. It’s expanded beyond the aversion to chocolate to include all desserts. Anyway, back to the
pep rally makeup party. There were 4 women in attendance. Since it was at the breast center I expected more breast cancer. There was one older woman finishing chemo for breast cancer, a woman in her forties dealing with her second bout of ovarian cancer and a woman my age sitting next to me with Leukemia. This was a surprise to me and I was thankful to meet someone my age. She is a few months ahead in diagnosis and is getting her bone marrow tested to see if she will have a transplant or continue on to maintenance chemo. She also has two children. It was nice to not feel so alone in this.
We watched a short, cheesy video about looking good and feeling better and then we were guided through the stages of applying the various make-up. This kit has everything and it’s mostly good stuff. Brands include Chanel, Clinique, Arden, Estee Lauder etc. The stylist volunteer showed us how to put on eyebrows and the other two ooohed and aaahed from the sidelines. Next came the wigs. Horrible, scary wigs from a big box. I decided to play along and I got put in a short, red Reba McEntire do. The older ladies just loved it on me. I couldn’t stop laughing from the absurdity. I took a picture but don’t dare share it because then people might think I like country music.
Overall it was a positive experience because of the free stuff and the people I met. Well done, ACS.
They put me in some dark lipstick that I’m not quite sure about:
I know I promised answers from the doctor on Thursday but I’m afraid we left with more questions again. Dr. Vasu is brilliant and conservative and patiently explains everything to us. She also tends to focus on the negatives when talking to us. She is not the type to pat your head and tell you everything will be okay. She tells us that we are smart people and she knows we can handle it so that’s why she shares so much. Her words bring reality and it is scary. I need to hear the truth but I also need to hear something positive from her. Like I might have a chance of long-term survival with minimal complications. I know it’s a slim chance for me to finish this and live a normal, healthy life but if there is a chance I need to hear it. It’s what keeps me going.
On Thursday we did receive some good news but it is unclear how we will proceed. The anonymous bone marrow donor who was tested for me is a 100% match. He meets 12 out of 12 criteria. An allogeneic stem cell transplant using cells from this matched donor is an option for my treatment. This is a risky procedure with scary side effects and possible long-term damage to my body. It would require a 6 week hospital stay and a year for recovery.
The other option right now is continuing with chemo. However, phase 3 of chemo relies heavily on on the drug Vincristine. This is the drug that possibly caused my dysphonia, dysphagia and autonomic neuropathy that I am still dealing with. After consulting with top doctors it was decided to challenge the earlier problems with chemo and try a 50% dose of Vincristine and monitor closely for side effects. A decision on the transplant will occur only after observing how I tolerate the Vincristine. Phase 3 of chemo starts Tuesday
Today I started physical therapy and I even drove myself to the appointment. The unlucky PT to have drawn my name turned out to be a cute 27 year old 2010 graduate. To his credit going over my medical history he didn’t flinch once. He kept a straight face even though his eyes were saying “Holy Hell!”. He seemed nervous with me so started off slow with him checking my heart rate frequently. My legs and arms are still weak from muscle atrophy from bed rest in the hospital. Now, I know that I may be checking in for another long hospital stay but I want to get as much strength back as I can while I’m on the outside. The PT asked me what my goals for therapy were. I told him that in March I was wearing 4 inch stilettos to work and running 3 miles in the evenings so I’d like to get back to that. He asked me how to spell stilettos.
We did leg lifts and arm exercises using a green band. Because of my shakiness he asked if I would consider aquatic therapy. I joked that he was just trying to get me in a bathing suit but he grinned surprised that the old cancer lady was flirting with him. Swimming is out for me because of the central line but I never miss an opportunity to be inappropriate.
I have a long way to go to get better and I may not get very far before I’m knocked down again but I have to keep moving forward, despite the unknowns.
Does anyone want to guess my platelet count yesterday? I won’t make you do a poll. 🙂 A normal person have a platelet count of between 150-450. The nurses will not give me a shot unless my platelets are at 50. The hospital anesthesiologist prefers (but never gets) a count of 100.
I was down to 8 platelets. My hemoglobin was also crazy low so I got a large transfusion of platelets and a separate transfusion of red blood cells. Donate blood, y’all! I think I might be a vampire because I feel really good tonight. I have had shortness of breath because the hemoglobin is what carries the oxygen to cells. My breathing has been inefficient. I feel like I can take a deep breath now. Nothing was wrong with my lungs there just wasn’t anything to carry the oxygen.
Since I’m non-symptomatic right now I have been given permission to drive. Tomorrow, I will be driving myself to the store for the first time since late May, I think. This is a long time for me to be dependent and I’m looking forward to some freedom! I feel 16 again.
Friendship quote of the day by B, “”A little more suckyness for more betterness later.” She is right. While trying to stay in the moment I can also look forward and believe that this will be over someday.
I got dressed for our Labor Day celebration and I kept clothes on a for a few hours before changing back into my pajamas. Jeffrey took a picture. My face is still puffy from the roids and no one told me that my “stripper tassels” were sticking out but I think the shot came out nice
Even chemo patients get a day off for Labor Day. So far, I’ve spent it in bed. Yesterday was a good day but today is rough. We are going ahead with our cook out anyway because friends cheer me up and they don’t expect a whole lot out of me anymore. I managed to make a delicious broccoli and provolone quiche for our lunch.
The doctors gave me three days of steroids last week to try to help me through the worst of the nausea and fatigue. It was like a miracle drug and I felt good most of the week. I also felt very hungry. I think I put on 10 lbs this week and it is probably mostly from sour cream. I sat around thinking of things I could put sour cream on. Steroid cravings are like nothing else. I don’t mind the extra pounds. I’ll need some in reserve in case of another long hospital stay. The roids have worn off now but a friend made me some delicious oatmeal peanut butter cookies that I eat one at a time from the freezer like medicine.
Tomorrow we are back at The James for a dose of apegaspargase. This chemo drug has a high chance of allergic reaction so they give lots of pre-meds that knock me out. I’ve got in the habit of taking a nap daily at the hospital anyway. I took my last oral chemo pills last night so this dose will conclude the consolidation phase. I will have phases one and two done with how many to go? We hopefully get those answers on Thursday. Phase 3 of my trial focuses mostly on multiple doses of Vincristine. This is the chemo that caused the autonomic neuropathy and peripheral nerve damage resulting in my tachycardia, voice, swallowing and hearing problems. The voice and swallowing have drastically improved (Thanks Kate!) but I’m still on meds for my heart. More doses could result in permanent damage so I will likely skip those doses. The question becomes what will be given instead?
Picture of my daily pill sorter.