Wednesday, December 30, 2009
This cold weather outside makes it very difficult for me to breathe when I go outside. I am figuring out some "tricks" to make me more comfortable. I do have oxygen at home and portable canisters for when we go out. Depending on the amount of walking, I don't always need them. David said, "I have seen grandmas with those tubes."
The swelling has returned to my face which may suggest more fluid issues. I see my oncologist next week and will see what the pictures show.
Two dear friends have reported that their cancer has returned this past week. Someone said that hearing you have cancer has to be one of the worst things you could be told. I said the second time was worse than the first because I knew what I was in for. My prayer for these friends has been sweet rest at night. The nighttime is the worst for me and I prayed that they and their families would be able to rest snuggly in their beds at night, even though they are facing these trials again.
Tuesday, December 22, 2009
Well, I am PLANNING on not having anyone stick me for the next 2 weeks. I hope to continue to recover and feel better before the next round of chemo begins.
Saturday, December 19, 2009
Friday, December 18, 2009
Wednesday, December 16, 2009
Tuesday, December 15, 2009
Sunday, December 13, 2009
I now have a private room because I need so much equipment! I am managing the pain well with a pump and feel a little better each day. No talk of going home yet. Need to wait until the fluid has drained. So far, I have drained about 4 L of fluid! No wonder I had trouble breathing!
Wednesday, December 9, 2009
Monday, December 7, 2009
Needless to say, my head is spinning with all of the logistical details. With this new development, the hospital stay is longer than we expected. Please pray that the surgery goes smoothly, no complications, and for a quick and easy recovery. Please pray for my men at home, too.
Friday, December 4, 2009
I haven't had a chance to speak directly with my oncologist but it seems that the cancer is not the cause of my discomfort. I need to speak with him to know the specific plan but I am assuming chemo will not be happening this week.
When I spoke with our families about this, they asked if I had good news and I told them it was more of a curveball. I am still trying to wrap my head around this one. The links to the information about pericardial effusion and the surgery are very informative, if you are interested in reading more about it.
Thursday, December 3, 2009
I cried today like I haven't done in a long time. All I wanted was to get through December with no chemo - to feel good and be able to attend my boys' Christmas happenings. I am thankful for the very short time I had off but it is never long enough.
Monday, November 30, 2009
It has been almost 3 weeks since my last chemo and each day, I feel better. I see my doctor on Thursday of this week. We will then schedule some scans. Hope you had a great Thanksgiving! It was hard for the boys and me to adjust to school life this morning.
Monday, November 23, 2009
Saturday, November 21, 2009
Thursday, November 19, 2009
Random story - David has been coughing his head off for the past week and we were trying everything to get rid of it - orapred, nebulizer, inhaler, elevated pillows, humidifier - everything! He was still coughing a lot at night and it didn't seem to be getting better. So, we had an appointment at the pedicatrician yesterday afternoon (3rd time in 2 weeks) and I had to get him from school early. His class was lining to go to one of his specials when I arrived. After we left, I asked him what special were they going to.
David - "Music class"
Mom - "Oh, I'm sorry you missed music class."
David - "It's okay. I don't really like it."
Mom - "Really? You like singing and dancing at home and at our church's contemporary service."
David - "Mom, we rock out at home and we don't sing that kind of stuff in music class."
I guess I will have to introduce him to more classical instead of classics.
Wednesday, November 11, 2009
I attended Toni's funeral service on Monday morning and then went to the support group last night. We laughed and we cried as we talked about Toni and the memories we each have. One of the members brought flowers and placed them in her chair. She even joined us in our group hug at the end of the meeting. It makes me sad to think of her family's loss but I am also happy she is no longer in so much pain.
Wednesday, November 4, 2009
The boys walked in as I was reading the email and crying and I shared with them what happened. All 3 of us were crying and Dawson is saying, "I don't want you to die!" and I'm saying, "I don't want to either!" I explained that the medicine I get that makes my hair fall out also gets rid of the cancer. He was happy with that.
Sunday, November 1, 2009
Thursday, October 22, 2009
Sunday, October 18, 2009
Tuesday, October 13, 2009
We have signed up for the Making Strides walk in Wilmington this weekend. It is also the weekend of the 3-day walk in Philly and it looks like it will be cold and rainy. I will miss the experience of the 3-day but not the freezing tent. I'm not sure I will be able to walk in Wilmington because of my chemo on Thursday, but I can be a cheerleader!
The News Journal had a good article today about my particular kind of cancer. It does a good job of explaining how my cancer progresses.
Wednesday, September 30, 2009
The passing out episode is now blamed on hypotension, which is basically low blood pressure. My BP has always been on the lower end but the chemo has my body reacting slower so I have to increase fluids and salt and slow down when I get up. I think I can handle that.
It was so nice to receive good news without a side of bad news attached. Thank you so much for your prayers and watch out because I am back on the road!
Wednesday, September 23, 2009
Thursday, September 17, 2009
Wednesday, September 9, 2009
Thursday, September 3, 2009
When I have these appointments where I am expecting test results, I usually start worrying about a week before. My mood changes because I have this visit in the back of my mind. But, by the time I was in the exam room today, I was okay. I have learned by now that no matter what the news is, He is faithful to get our family through it.
Friday, August 28, 2009
I had an MRI yesterday and will find out late next week the status of the brain tumors. We are praying that they are gone and never to be seen again. In the meantime, we are gearing up for David's first day of school on Monday. His teacher is the one he wanted and he is very excited.
Saturday, August 22, 2009
Friday, August 21, 2009
I had my third round of chemo yesterday and am really feeling green today. I had to go to Christiana for the Neulasta shot which will boost my white blood cells, but also comes with some bone pain. As I was putting the kids to bed tonight, Dawson asked if I would sit in there for a minute. My reply - "No, I have to go puke." Dawson's reply - "Well, when you're done, can you sit in here for a minute?" It made me laugh.
Monday, August 17, 2009
The other funny one was when I asked him if he had any problems with anyone at camp and he told me about one of his bunkmates, Jake. He said, "Jake has an aversion to making friends." (Obviously not something David came up with on his own.) He told me that is what Jake says about himself. But, by the end of the week, Jake signed David's shirt, "Best Friends." Some hard life lessons are learned at camp. First grade should be fun!
Sunday, August 16, 2009
Someone on Facebook asked me about the post camp laundry. Robin gave him a dirty laundry bag so he wasn't putting on the same clothes each day and some clothes ended up in the bag but so did wet bathing suits that sat in a dark, humid, tent -like structure. Robin is sparing me the smell of that bag and is on a mission to remove that lovely smell from the clothes.
Monday, August 10, 2009
Wednesday, August 5, 2009
The only things he asked me to buy for him all day were a soft pretzel (shaped like Elmo's head, of course) and an ice cream cone.
Saturday, August 1, 2009
I am ready to get back on this chemo. Sounds funny, right? I have started experiencing symptoms again - coughing, shortness of breath and lower back pain. The chemo might wipe me out but at least I feel better.
David went to visit his Aunt Robin in North Carolina last week. He will be gone for another 2 weeks. The last week in NC, he will be attending Camp Kesem, a camp for kids whose families are coping with cancer. He is very excited about it and I know he will be okay there - it's me who isn't okay! Dawson and I have enjoyed our time this past week, just the 2 of us. Today, we were listening to a CD David brought home from a VBS he attended. I really started missing him today because he was always singing with the CD and dancing with it. Right after I started thinking about him, his aunt sent me a photo of him in a pirate costume. He is with her at Bald Head Island, NC for a pirate weekend. I miss my baby.
Some have asked how Dawson is doing without David. He asks where he is everyday, even though he already knows the answer. One morning, I saw Dawson climbing the ladder on their bunk beds and I asked him what he was doing. "Just checking." He was making sure David hadn't snuck in during the middle of the night. We talk to David every night on the phone and Dawson always wants to talk to him, too. One day, they were just making silly noises at each other. We had a good laugh. Some things never change.
Sunday, July 19, 2009
Saturday, July 18, 2009
Thursday, July 16, 2009
The nurse last night told me how cute I was and I had to laugh. She said she could see it on my good side and I told her I feel like a monster. A friend joked about getting me a Phantom of the Opera mask. It really does look bad and Dave hasn't even seen the worst of it yet. He has never had chicken pox so I told him to stay home while I'm here.
A discharge tonight is possible but I would be okay with another day. It isn't fun here but I am glad this is being treated in the hospital. I am on the oncology floor so I am not allowed out of my room since I could spread this loveliness to other cancer patients. I understand, but pacing the room isn't quite the same as walking the halls.
Tuesday, July 14, 2009
After being in treatment off and on for 2 years, this is the first time I have been hospitalized and it wasn't planned. David really was shaken by this today. He said as I was leaving tonight - "This family just doesn't seem right when you aren't here." He will be so busy tomorrow with swim lessons and playing with friends, I hope he forgets where I am.
I was scheduled for chemo this Thursday but the doctor said we have to get this taken care of first. We have seen good progress with the chemo so I am hoping it isn't delayed too long.
On a personal note - just about the time we are getting into a rhythm, a wrench gets thrown into the works. When the doctor first told me the plan, I just had a sinking feeling in my stomach. I couldn't wrap my head around the details and what I needed to do to prepare for this. I did get it together and I had time to spend with the boys before the hospital called. Fortunately, Dave's boss is very understanding and flexible with his schedule. It has been very helpful to be able to call him and he can help me whenever. This is our lives.
Thursday, July 9, 2009
I have (very, very few and tiny) hair! I frequently examine my head for something and there is a little bit. I feel like a preteen boy carefully looking for a few dark chin hairs. It isn't evenly distributed but it is still hair. We'll see how this chemo affects it. It might take the few microstrands I have in a couple weeks.
Saturday, July 4, 2009
Sunday, June 28, 2009
We went to San Antonio, Texas last week to attend my younger brother, Frank's wedding. We had a great, relaxing trip. It was the boys' first wedding and they did pretty good.
We got home from the airport around 1 a.m. Friday night and then attended another wedding Saturday afternoon. The boys came with us to the ceremony because the bride is a friend to our whole family. She lives in our neighborhood and whenever we took walks around the neighborhood, the boys always wanted to stop by her house. She would then chase them around the yard.
I started not feeling too hot on Friday. I have been coughing for a month or so now but Friday seemed to be worse. Today, I just felt bad - not any one particular thing but everything was uncomfortable. I start chemo on Thursday and hope it will make this uncomfortable feeling go away (but the chemo does come with its own set of problems.)
Sunday, June 21, 2009
This is moments before the other kids joined us . . .
Eventually, there were 10 kids in the middle of this mess . . . but, they had fun!
Thursday, June 18, 2009
I am enjoying this summer vacation, not the rain and cold weather, but no alarm clocks and no clock-watching in the afternoon for the bus stop. The boys and I haven't hurried much.
Tuesday, June 16, 2009
This isn't good or bad news. But, I sure could have used better news than this.
Friday, June 12, 2009
Now we wait to find out about my brain. But before that, I have 2 little boys who are very excited that we are about to fill water balloons. I might get wet.
Thursday, June 11, 2009
I see my doctor tomorrow to find out the results of the CT scan and then I have an MRI of the brain scheduled for Monday. I guess my vacation is over.
Thursday, June 4, 2009
I can not express the sadness and fear I feel before going into these tests. It overwhelms me as the test approaches. I hate living my life from one scan to the next, knowing that the report will determine my fate for the next however long.
Please pray that within the next couple weeks, I will get the news that there is no cancer and to enjoy my summer.
Monday, June 1, 2009
Today, I got an email about signing up and it had a video attached where the group was singing, "The Greatest American Hero" after the first day of walking. That was in San Diego, but we did it too. It brought back all of the memories of the walk (good - like finishing it! and bad - like the sleeping arrangements.) Not sure what I am waiting for.
Friday, May 29, 2009
We were given the wonderful opportunity last weekend to go to Avalon, NJ. Both boys had off on Tuesday and Dave was able to work from the beachhouse on Tuesday so we had an extra day down there. The weather was great throughout the weekend (little cool on the beach) but Tuesday was a mess - cold, windy and rainy. That had been the day we were planning on visiting the OC boardwalk but had to come up with plan B. What to do with 2 boys when I am not familiar with the area and outside is not an option? I pulled out the phone book. This will sound like a public service announcement but we ended up at the local library. The boys had a good time - the children's room was empty and had some computer games they really enjoyed. We later drove into Stone Harbor and visited some stores and got some fudge. When they came home, they told me how much fun they had. I guess mom did okay.
Friday, May 22, 2009
Today, I woke up feeling very refreshed - like a new person! The nausea was gone and the headaches are gone (for today) too! I had lots of people tell me today that I looked like I was feeling better. It's amazing how happy and alert you can be when your head isn't throbbing!
I just had an all-around good day. I went to the DMV (that wasn't so good) but everything went smoothly. I had a nice visit with a friend who is recovering from surgery. I surprised David at his school and he took me out to lunch (at the cafeteria). I had a good nap and then spent the evening with our neighbors for an impromptu cookout. I also made my first pitcher of margaritas tonight (for the cookout). Considering the pitcher I brought home was empty, I guess they were a hit! Some of the children almost sampled them as well because the pitcher was commonly mistaken for lemonade.
Friday, May 15, 2009
I am still not feeling great. By the end of the day (even with a nap), I am pretty wiped. The doctor said it is normal considering the radiation and the steroids. But, each day is a little better than yesterday.
Tuesday, May 12, 2009
We had a great dinner with both of our parents. My parents are now on their way back to Arkansas. I have been doing okay on my own. I even started exercising again. I have been sleeping better at night, too.
I had my MRI of the brain yesterday and have an appointment with the radiation oncologist on Thursday. I don't expect to hear anything before then.
Wednesday, May 6, 2009
We will be celebrating tonight by attending David's baseball game. Oh, but we will go out to dinner over the weekend.
Thursday, April 30, 2009
Then, I had an appointment with my oncologist this afternoon and was also scheduled for Herceptin following the appointment. My visit went well. I am cleared to drive!! I was very excited to hear it and then a little nervous since I haven't driven for almost 7 weeks! An MRI of my brain is scheduled for the middle of May to see what progress has been made and then we will do a follow-up CT scan to check the rest of my body the beginning of June.
By the time I got home from everything, I was so exhausted. I usually rest after lunch and didn't get a chance to today. I did get some rest late this afternoon and was able to enjoy dinner with everyone. Oh, I drove earlier this evening. Dave announced to the neighbors as we walked out the door that everyone should stand back because Barbara has the car keys. I also appreciated another neighbor directing me as I backed out of the driveway. We arrived to our destination safely and with no events along the way . . . and it felt so good!
Monday, April 27, 2009
Today, was a little easier too and I know each day will start to feel that way. I meet with my doctor this Thursday and then the MRI will be scheduled for the next week or so. I have had no symptoms for weeks now. My memory is certainly not what it was but that is why I have lots of lists around the house! I also did a field test at my ophthalmologist's office last week to see how my glaucoma was doing since I had been on the steroids and he called today and said there were no signs of it. The steroids could have put additional pressure on my eye and actually made my glaucoma worse. But they didn't and that was great news to us!!
We also found out today that Dave's class for the summer can be taken in New Castle instead of Dover. We are just getting lots of good news today and we sure you can use it!
Monday, April 20, 2009
Only 4 days left on the steroid! The problem is that my ability to handle stress is difficult right now and "life" things that I would normally be able to handle are not for me. So, Dawson decided now would be a good time to become a difficult 3 year old. Nice timing, kid.
Wednesday, April 15, 2009
I have been tapering down on the steroids this week and have not yet had any of my original flashes/pressure come back. I pray that this continues as the week goes on and I can get off these things and quick!
I was helping Dawson get dressed for bed last night and had a baseball cap on my head that kept getting in the way. I asked him if I should take it off and he said he didn't want to see my weird hair. We have done bald around here before but I think the swollen face along with the head is a little harder on them this time. Even David has asked me to not go baldy because it makes him sad to see me without any hair. Nothing like kids to give it you straight.
Friday, April 10, 2009
"There are treasures in the storms, opportunities in the interruptions. They issue mandates to uncover what we really believe in the marrow of our bones. They wrest from us our schedules and plans, and lead us to a place of surrender. When the storm is spent, our brokenness stands tall, like the old oaks and hickories and maples. We bend and bow and shed our excess layers, but we do not lose heart. We are not unlike Paul who wrote in 2 Corinthians 4:8, We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.
Even in our brokenness we see more clearly who He is; that even as we wrestle in turmoil, we discover a steely resolve that we are not alone; that, even as the storm rages, we discover what we suspected all along: That He is in the storm, in the turmoil, in the brokenness. And we declare , "Oh Yes, I am sure. Thou art the Christ."
Wednesday, April 8, 2009
I am also having trouble with coordination issues these days. Sometimes my legs don't want to go in the direction I want them to. I almost knocked Dawson over outside the other day when we were walking!! He goes, "Whoa, Mommy!" I joked with my mom that I am not drinking but I probably look like it when I am stumbling around. Just trying to tie my headband in my wig became challenging. I am having trouble with short-term memory right now too. I can balance my checkbook but I have no idea what happened to the piece of paper that was just in my hand!!
It is very frustrating to not be myself. I pray that this all comes back. I went to my cancer support group last night and one of the folks didn't recognize me. She said, "Is that Barbara?" I thought - I don't recognize me either.
Sunday, April 5, 2009
Saturday, April 4, 2009
So, I have my new wig and some new hats and will go buy some accessories today. We are laughing because we wanted to take the boys to Linvilla Orchards later today for a bunny hayride and it happens to be a CRAZY WINDY day. I will NOT be wearing the new wig. Seeing it fly across an orchard and chasing it down is not how I want to spend my time. I have some hats with adjustable bands and it will be on tight!
Thursday, April 2, 2009
We tried decreasing my steroids earlier this week (not a good thing to stay on for a long period of time) and found out today it was too soon. The flashes and pressure came back with a vengeance. So, the dosage went back up again. When you see me, my face is getting a chipmunk look to it which will go beautifully with the bald head I will have in the next week or so.
Here are boys, so excited with the Easter bunny.
Saturday, March 28, 2009
I need to sleep a lot but am able to still enjoy my wake up times with the boys.
Wednesday, March 25, 2009
Monday, March 23, 2009
I was encouraged by a story of a woman around my age, diagnosed with breast cancer 1 month after her 5th child was born and then found out it had metastasized to her brain when the baby was 5 months old. That baby is now 5 years old and she has been on a preventive drug ever since with minimal difficulties.
Friday, March 20, 2009
Sunday, March 15, 2009
We have just returned from a whirlwind of information from my oncologist and now know there are 4 tumors, 2 of which are near the occipital nerve which may explain the vision issues. I had another episode of flashing this morning while out on a walk with Dawson. We now have a week full of tests ahead of us to see if the cancer is somewhere else also. I started taking a steroid on Friday to reduce swelling in the brain and received a dose through IV today. The treatment plan for this is whole brain radiation. We meet with the radiation oncologist tomorrow and it appears that the radiation will begin in the next week or so. I also meet with my ophthalmologist tomorrow to look further into the vision problems to see if I am having optic seizures.
Now that I have all of the technical stuff off my fake chest, let's make it personal. I have been feeling fantastic! The best I have felt in the past 2 years!! How can this be? I drove to Williamsburg last weekend and had no problems. I sat in my boys' room for hours last night and just wept. We had to have an open conversation with my oncologist today about how this is going to affect my mental capacities. Whole brain radiation can cause "early aging" of the brain and I may qualify for a clinical trial to try and reduce the short term memory loss. I just keep thinking about my children and the fear of becoming someone they don't recognize. The oncologist showed us the scan and doesn't feel that any of the tumors are pressing on areas that could cause this. But this is my brain we are talking about !!!!!
I have thought about so many things - my 3rd hair loss, my brain getting cooked, my inability to drive until all of this gets under control, the side effects of the steriods - including weight gain (which really makes me angry because I just worked my tail off to look good again) the time and energy that is taken away from my family so I can go to treatments and recover from them and my head is spinning. We have asked God a lot of questions. But, I can see His grace in the handling of all of this - the timing of the vision loss, our trip to Disney, the return of my Ipod (I lost it late last summer and we just found it again and it was my sanity through radiation the last time).
I know this may seem like rambling but it is only a few of the thoughts raging through this cancer-infested brain of mind. I received Herceptin today and the male nurse was making a joke and said he didn't want my head to get too big - now that was bad timing! We will update as we know more info.
Please pray for no more cancer. Please pray for a complete and miraculous healing of the cancer that is present.
Monday, February 23, 2009
We surprised our kids with a trip to Disneyworld on February 11. This was not an easy secret to keep! We had an amazing time and returned on February 17 to cold winter weather. We are all daydreaming of that Florida sunshine. Dawson has asked almost every day, "When we go back?"
Thursday, January 29, 2009
Friday, January 16, 2009
Within the last week or so, I really was at peace with whatever was going to come. I talked openly about my thoughts, whether the news was good or bad. I looked to these verses in Psalms daily to comfort me:
Psalm 139: 13-18, 23-24
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you. Search me, O God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.
I ran into our pastor on Wednesday and told him I was pretty calm and didn't know why. He put it simply - grace. I really felt prepared for whatever was going to happen. But, I am so happy it turned out great!
Thursday, January 15, 2009
Saturday, January 10, 2009
Monday, January 5, 2009
Friday, January 2, 2009
In about 2 weeks, we will know if I am really done for now. I have a CT scan scheduled for next week to see the progress that has been made. When the scan comes back clear, then I feel like I can really celebrate.