An encouraging verse sent by a friend...Psalm 73:26 "My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

Friday, December 18, 2009

Catching Up


OK. It's been way too long since I have blogged. Here goes...
We're all doing really while, in spite of Ethan and Anderson having colds. We're hoping the rest of us don't catch it! We are enjoying the Holiday season in spite of its busyness and trying not to pack too much in. We've enjoyed a Christmas party at Bob's work (photo attached) and a potluck with friends. The month has also been exciting with Dawn's baby shower, Ethan learning to crawl and pull up on things, Lyndsey's enjoyment of the Christmas music (you should see her dance!), snow, Anderson getting ready to lose his 4th tooth, and the kids experiencing ice skating for the first time.
Last weekend, Bob and I went to Boston for a set of CT scans, doctor's appointments, and the removal of my port. All went very well. It was great to see some of my nurses again (quick visit) as well as my doctors, and the results of the CT scans were good. We stayed overnight in Boston at a friend's place and enjoyed dinner in the North end. (I'm sure we were quite the sight, walking in the rain while I caned and Bob held the umbrella for both of us. How romantic!) Getting the port out was the last thing on the "to do" list, and although it took longer than expected (they used me to teach a resident...a little disconcerting since I was awake for the whole thing!), I was amazed at how good I felt afterwards. I was expecially surprised at how I felt emotionally - I felt "whole" again. I hadn't thought that the port bothered me too much, but it sure was nice not having it in my body anymore, nothing extra (besides the steel femur that I'm happy to keep).
After all the appointments on Monday, we WALKED from MGH to the Cheesecake Factory (at least a mile) and had a DELICIOUS dinner. It was the first meal in its entirety where I could taste (and fully enjoy) everything! Woohoo!!! My tastebuds aren't all the way back, but this is huge progress. What a blessing to have such a great meal with Bob!
OK, enough for now. I'll write more later.

Tuesday, December 1, 2009

November "highs"

Well, the last half of the month has been fabulous. My energy is improving, and it is so good to not have to be going back to the hospital for overnights anymore. I don't really know what daily life will look like yet, but we are getting that much closer. The Holidays are always so crazy anyway that I don't think we'll really begin to adapt until we begin 2010. I guess that it's nice in that it might be more gradual, perhaps a bit easier for us.
The Thanks Giving Celebration was wonderful. Thank you to the many of you who have sent me notes about it. I really appreciate them.
Thanksgiving was just as good as I dreamed it would be. We kicked it off with going to Dave, Jill, and Aiden's for dinner (Bob's brother and family). Mom and Gerry were there as well as Jill's parents. It was a very comfortable evening with lots of entertainment thanks to Aiden, Ethan, and Lyndsey. The food was yummy and I could actually taste it! I think my favorite part was Jill's cinnamin rolls...Mmmmm! We headed for Pittsburg at 9:00 and got there by midnight. The next few days were filled with family and fun. It was so good to be back; it felt so normal and familiar. We got a lot of snow and had an adventure with losing the electricity for 19 hours. It was a visit we won't forget! The kids made snowmen with Daddy, Grammie, and Aunt Dawn. Ethan crawled for the first time on Saturday. (Now he's a little man on the move.) The only thing that kept me from crying over leaving was knowing that we'll be back up North in a few weeks for Christmas. Eleven full months being away was way too long.
I started physical therapy a few weeks ago and am already seeing progress. It will be a long process as there is so much to do, but I'm encouraged to know that I'm headed in the direction of walking without a limp (maybe by my birthday?). Right now, the biggest challenge is making the time to do my exercises. We've got to develop a family routine that will help me fit it in. God will help us figure it out.

Sunday, November 22, 2009

Thanks Giving Celebration Update

My body is so sore from all the standing, but my heart is so full. It was a wonderful evening, in spite of technical difficulties. 8) My reaction to all of this made me realize one area where God has changed me through this experience. My "type A" side of me would have been disappointed, and maybe a little bit stressed, that everything didn't flow seamlessly. However, it did not bother me at all. Praise God! (Less stress is always a good thing - for myself and those who are around me, especially Bob.) The trials of the flexibility required for chemo treatment gave me lots of practice letting go. It's not like I have control over many things anyway, but I think that sometimes there is an illusion of having control. Not so much during the last 11 months! So, I will pray about not reverting back to old ways as I know that can happen as the trial is more a part of the past.
We will try to post pictures some time soon. Also, we have a copy of the slide show, and Luke/Tris videotaped the celebration. If any of that is something you'd like to see, just let me know. Of course, I'd be happy to share it. Tris and Luke and also going to put together a "final project" that documents our journey in a more complete way. (Thank you so much, guys!) It won't be ready for a while, but I know that it will be worth the wait. So, I won't put people on the spot by asking if they want to see these things. (OK, I'll probably put a few people on the spot, like my brother Dan, but I'll try not to!) You can talk to me about it. 8)
Time to bust the boys out of bed so we can get to church. (Of course, Ethan is already up.) I'm amazed at how richly blessed I am from the celebration when all I was trying to do was give back as a token of thanks. God is like that. 8)

Saturday, November 14, 2009

Update

Well, I was feeling totally exhausted Thurs. and Fri., like I'd been run over by a truck. It was very hard to go back to that place, but I am so thankful that God kept reminding me that He is in control. He also reminded me that this is so close to the end, to have patience.
I was so wiped out that I went to the Dover hospital thinking I needed a blood transfusion. I was so sure of it. However, my "young" bone marrow is holding its own and bringing back the red blood cell count. Praise God! So basically, it was the chemo kicking my butt. Because this was a different treatment (all of 1 drug in 1 day instead of over 2 days), it was tough to know what was what. And, my doctor kept reminding me not to push too hard. What?! Me push too hard? I was relieved to know that I was doing what I should, having my blood checked, instead of wondering what my problem was. 8)
I noticed that even though I was only gone for part of the day, the time away from the kids (with me at the hospital) was hard on them. They're behaviors (Anderson's and Lyndsey's) were so different, but I think they were stressed out. After all, we had already celebrated the end of chemo. I'm sure it's hard to understand. We're back together again though, and there's lots of cuddles.

Wednesday, November 11, 2009

Last Chemo Session

The day went surprisingly quickly. I was very happy to be able to say good-bye to many of my nurses before I started in with my appointments. We got a nice photo too. Hopefully, some of them might be able to come to our celebration, but distance and work shifts might prove problematic. We'll see!
My appt. with Dr. Choy went well. We've worked out the details of the future plans. In Dec., I'll have a chest, abdominal, and a pelvic CAT scans as well as a bone scan. They'll also take my port out if everything looks good, which we're expecting. Part of the reason for the scans is so that there is a baseline for future scans (every 3 months for the first 2 years and then every 6 months through year 5). Some of the scans can happen in Dover, but December's appts. will be in Boston.
The chemo went well, much faster than normal since it was a full dose of only 1 drug (adriamycin, the one that gets hand-pushed in). We weren't sure how my body would be affected considering that it was twice as much adriamycin at one time (rather than being administered over 2 days). This drug will not impact my kidneys, which are still a little bit revved up but on the higher side of normal. They're coming back down to normal, slowly but surely. We did find out that my red blood cell count is quite low. This might mean a blood transfusion at the end of the week. Dr. Choy said to watch the symptoms.
Aunt Carol and I got back around 8 Monday night. Lyndsey was sound asleep, but the boys were still awake. Ethan greeted me by putting his hand on my cheek and leaving it there. It was so sweet. He just kept his hand there, and when I'd start to move, he'd hold on to keep me there. (All the while drinking his bottle while in Daddy's arms) Although Ethan has done things kind of similar in the past, this was a first. When I went up to kiss Anderson good-night, he was obviously excited to have me home. Lots of hugs and kisses and things to talk about. It was really cute.
So, I'm glad to be home. I'm trying to take it easy and not overdo it. I know that poor choices could lead to nausea, in spite of the anti-nausea drugs I'm taking for the first few days post-chemo. I'm praying that my hair won't fall out again. It's actually making progress! I know that if it does, it will be OK, but I also know that God cares about my wants as well as my needs. We'll see what happens!

Wednesday, November 4, 2009

Treatment Update

The scoop is that my kidneys are still a bit worked up, so I won't be having any more cisplatin either (that is 1 of the 2 drugs that I get an "A" and "B" dose 2 nights in a row for my "big guns" treatment, which is what I'm due for). Also, the methotrexate level is still detectable. So, the game plan is that I will go to Boston on Mon. for blood work and providing the methotrexate is out of my system, I will receive adriamycin "outpatient". I should be home by 6:00. And that's it for me and chemotherapy for 2009. (Routine scans will be scheduled for a month down the road.)
I'm so thankful to be getting this over with at the beginning of the week. I'm so thankful to have been able to do an art "class" with Lyndsey today. I'm so thankful to not have been in the hospital this week. I'm so thankful that I won't be staying overnight at MGH anymore. The unknowns are whether this treatment will knock out my hair again (which is starting to fuzzily grow in) and also what physical side effects I'll experience. Without the second drug and 2 nights of very interrupted sleep at the hospital, perhaps it won't be so bad. We'll see!

Monday, October 26, 2009

A Change in Plans

The game plan was that I would go back down to Boston tomorrow night with Melissa and receive my chemo in the wee hours of Wed. morning. Mom would stay with Melissa's and my kids while we were gone, with Melissa's husband taking over after work. We had "helpers" lined up to assist Mom with the 5 kids.
My blood work from today revealed that my kidneys are in high gear, which is a first for me. (Normally, it's my liver that keeps me in the hospital the extra night after methotrexate.) This is my body's way of screaming "UNCLE!" to the doctor, so he has decided that I will not be receiving ANY more methotrexate. This week's treatment is canceled, which as you can imagine left me cheering. I'll get my last treatment, the big guns, next week, as planned.
So for those of you who are concerned about the kidneys, my level should be 0.5-1.3 (with my personal numbers in the range of 0.7-1.0). Today's reading was 2.7. So, I go for blood work again tomorrow to make sure that the numbers are dropping. In the meantime, I need to hydrate more and keep taking the antidote for the methotrexate "until further notice".
I think the coolest part about all of this is how I can see God's hand in it (which I'm not always able to recognize). I was concerned about Mom having all 5 kids, given her fatigue lately and the kids just having got back from family vacation. I was concerned about my body handling the methotrexate as I don't feel ready - still quite fatigued and not quite right. I was bummed to have to tell Anderson's teacher "no" to helping with the pumpkin party on Thursday, due to treatment. Well, this "change in plans" took care of all of that in 1 swoop!

Friday, October 23, 2009

Chemo Update

Sorry no info. until now; Bob scrubbed the scrolling banner. 8) I'm home and exhausted...slept all day except maybe 2 hours. God keeps reminding me that tomorrow is a new day, and He still has me in His hands. At least I'm not sick, just feel crappy-tired, chilled, no appetite, thrush is back. Some of it might be due to getting a flu shot too. (H1N1 not avail. yet, so maybe I'll have that next week.)
Interesting trip to Boston, as always. Adventure started with the car drive; Aunt Carol and I missed our exit and didn't realize until we saw signs for Rte. 90. It was very dark, lots of trucks on the road (we passed), and we were gabbing. We're not used to traveling it at night either. Regardless, a phone call to Bob and a trip through the airport terminal got us back on track and we eventually made it at 9:08. The whole thing struck me as quite humorous, not sure why. The late time didn't really matter because they weren't going to give me chemo until the early morning (at my request - it's too tough on me in the middle of the night). The bed wasn't available until 7pm, which actually turned out to be a good thing as I was able to have Anderson's birthday breakfast for dinner with the family (thanks to Auntie and Dave).
I ended up getting chemo at 10:30am due to some craziness on the floor and the dr. not realizing that they won't mix the chemo until 9am (he had written the order for 10/22, which meant they couldn't mix it the night before). So, this was a very different experience, and my fatigue is usually what I would be experiencing Thurs. night. I'm just thankful that my liver settled down enough yesterday so I could get home mid-afternoon. (Also, it was great to see my nurse friends on Phillips 21 again as it had been about a month.)
It looks like I'll have the same schedule next week due to the minimum time required between treatments.

Wednesday, October 21, 2009

Off-time Fun

God really blessed us with providing a great deal of energy during these last 2 weeks. I still nap most afternoons, but I've actually taken care of the kids a little bit by myself and accomplished a few things on my wish list.

*Anderson and I went on a birthday date...lunch at Friendly's, 6 year photo, and shopping for party favors for his brithday party with 5 friends.

*God gave me the energy to prepare for the party - doing invitations, shopping for party favors and supplies, making Anderson's cake, getting a gift, and making birthday brownies for his class. (I was very surprised by the energy I was able to exert, as well as the fact that my hip retaliated. It seems to be a bit better now.)

*The kids and I, with the assistance of my friend, picked apples at an orchard, saw baby farm animals, and went through a maze. Ethan loved riding in the backpack on Melissa's back! We all had a good time in spite of the cold.

*We had some fun family time with another family at a different orchard, having a pizza picnic and getting drops. (Mom and Lyndsey spent all day making applesauce! Hard work!)

*I finished getting Lyndsey and Ethan's clothes settled - clothes that are too small packed/given away and clothes that fit put in the drawers. Anderson's clothes are half-way there.

*I've been able to go to women's Bible study regularly...so uplifting!

*I actually scrapbooked 1 night - not very productive but the chatting was great. I also hung out with friends at a girls' night out. It was great to be with the girls.

So, as you can see, God has been very gracious. I know that this last cycle will bring more challenges, and after that, even more challenges with not overdoing it and the transition within our family. But, God will continue to take care of things. I just need to keep my eyes on Him.

Yogi Visits

See Anderson's Blog!

Saturday, October 3, 2009

Update

This last trip to Boston went pretty smoothly once they finally found a bed for me (after calling a couple of times to change the status). Jason stayed the first night, and Nichole stayed the second night. I really appreciated the quality time, good conversations. I'm doing well considering that this week was the big gun's treatment and sleep was challenging. Once again, I was able to walk out of the hospital! The fatigue hit Friday (and today), but I won't complain. This could be SO much worse. The thrush is back but no mouth sores so far! The dr. cut both drugs in half this time, and I had a blood transfusion. So, these are good reasons for me to have better-than-normal energy. Good-bye Cycle 5!!!!
When I got home on Thursday, I took Ethan to the dr. The poor little guy has a double ear infection. My poor mother spent a lot of the previous night awake, trying to sooth him back to sleep, but at least the next night was much better, thanks to the antibiotic and Tylenol. He seems to be doing well now.

Monday, September 28, 2009

God is so good

So many things have happened recently, that I felt I could not just post the list in the "praises" column. I have to give you more details!

1. Last week was so interesting with the "different" accommodations when I went down to chemo. I was not familiar with this floor of the hospital at all, so it could have been quite stressful. However, God was so good in keeping me at peace. Maybe I've actually learned a little bit from His lessons when I had to be on Ellison 14 with Jason! Wouldn't that be cool?! I'm hoping it's long-term learning, and I'm thankful because I know the Source of all my peace, thoughts of looking to God's purposes in the change of plans, and ability to laugh instead of cry in frustration.
2. I wasn't sure what this week was going to hold as Aunt Carol needed to stay in NH. I had e-mailed Jason about going down with me, but I suspected that he had some scheduling conflict because of the youth group he leads on Wed. nights and the short notice. (Jason is the speaker.) Sat. AM, I went to a women's get-together, and my friend Nichole gingerly approached me about whether she could go to Boston with me (concerned that she not make me uncomfortable). It was an answer to a prayer before I even prayed it! So, Jason will stay with me Tues. night (as Nichole has work commitments on Tues.), and Nichole will stay with me Wed. night. Isn't that cool?
3. I avoided a blood transfusion last Monday, but I believe I'll need one this week. This is probably good timing in that I'll be at the hospital anyway and can have the transfusion between treatments (since it's not methotrexate this week). That sure beats spending an additional 4 hours away from the kids!
4. God sent me some encouragement last night through a conversation with a friend that I don't get to talk to all that often. It was such a pleasant surprise that she shared with me how God has used our situation to draw her closer to Him in prayer. This totally touched my heart, both what she said and that she shared it with me.
OK, gotta go get Anderson at kindergarten.

Tuesday, September 22, 2009

Boston Update

Well, it's 11 pm, and I've been struggling to maintain a good attitude. At this point, the situation is just ridiculously funny...to the point where if I start laughing about it, I might cry. So, here's the scoop.
I'm on a different floor than ever before because the other floors are all full. (Way to feel special, huh? I can't complain though; they're letting Aunt Carol stay here, which is not common practice.) My first nurse made me very nervous. I coached her through the pre-chemo steps and tried not to notice her apprehension or shaking hands, all the while praying. I ended up not being accessed until 3.5 hours after I got here, and at that point, the hydration was not the right solution (too low a percentage of sodium bicarb). So what does that mean? I'm just starting chemo now (2.5 hours later) because my pH hasn't been high enough (since my body had time for it to drop back down after the pretreatment I took at home). So in spite of my best efforts - like being assertive in making sure they activated me right after I got here - I'm still getting treatment in the middle of the night. Ugh. The good news is that I have a different nurse who I am more comfortable with.
OK. Now let's talk about the accommodations. The room is very small, which is fine except that we're supposed to fit a cot in here. You should have seen me and Aunt Carol trying to figure out how to rearrange the room - "interior design at Mass General" - so that we could fit a cot as well as have room for me and my IV pole to make it to the bathroom a million times during the night. We finally decided to move my bed over, after about 5 minutes of trying to figure out how to take the brakes off. Oh yeah, and we're still not sure how we released them, but the brakes are back on. Speaking of bathrooms, like the room, it's teeny. I can barely fit me and my IV pole in there at the same time. No shower either. It totally reminds me of a bathroom on an airplane, just slightly larger.
So, yet another adventure in chemotherapy. At this point, it doesn't really take me by surprise. God is still in control, regardless of how it feels. And who knows? Maybe the middle of the night treatment won't hit me so hard this time. If it does, God will pull me through. At the very least, these are good memories with Aunt Carol.

Monday, September 21, 2009

Medical Update

Last week, I had methotrexate and it looks like I will again tomorrow. Aunt Carol is my traveling companion. 8) I am so thankful to report that I have not gotten mouth sores...thank You, God! I also had a bit more energy on Sat. and Sun., enough to socialize a bit. It was like a breath of fresh air to be able to hang out with friends. The sunshine sure felt good too!
My dr. thought that I would need a blood transfusion today, but I didn't! My count was 27, which is reasonably good considering everything. So, that was a nice surprise, getting to spend the second half of the day with the kids instead of in the hospital.
I have been very encouraged to know that I can count my remaining treatments on 1 hand. Getting closer!

Tuesday, September 15, 2009

playing

Here is a photo from last Monday. My dear friend, Candy, spent the day with us and helped me bring the kids to the park after kindergarten. The kids love climbing on these wood structures at Roger Allen Park, and it was great spending some more active time with them before I went back for treatment. It was a beautiful, sunny day. Thank you, Candy! I could not have done it without you!

Ethan can sleep anywhere!

Ethan has fallen asleep while bouncing in the Johnny Jump-up, continuing to bounce periodically. He has fallen asleep while being held standing up in my lap. This is a time that I caught on video...so cute!

Wonderful Visits of Encouragement

I have been so blessed to be surrounded by such a great network of family and friends, and even strangers.
I don't think that I blogged about this already, but I could be wrong. Anyway, it's on my heart again. Around the half-way mark of chemo, I really wanted to do something to celebrate. My first thought was to go North to Pittsburg, but that just wasn't best. I ended up without an idea of what to do. Well, God took care of it; I didn't need to plan anything. I had some very special visits right around that time that really boosted my spirits - seeing Gram H., Aunt Paula, Jen, Aunt Carol; a visit from Aunt Deb, Uncle Denny, Grammie C.; another visit from Aunt Cheryl, Uncle David, and Whit; a day-long visit with Ryan (my cousin) and his family from Kentucky joined by Jason and Dawn; a visit from my cousin Karrie and her family; as well as the regular summer visits of Beth Anne and Dave, and Denise and other wonderful friends who live nearby. What better celebration could a person have?!!! It was great.
More recently, I had another very special visit. "The great aunts" took an excursion to come see us, and boy, did I feel special. The photo below shows the crew - (back row, left to right)Grammie, me, Aunt Norma, Aunt Geneva, (first row) Aunt Katherine, Lyndsey, Aunt Hilda, Aunt Betty, and Aunt Margaret. The set of older women are all sisters-in-law, married to the Covill brothers (except for Aunt Geneva who is Grampa's sister). How special that this group of ladies piled into the mini-van to spend a day on the road visiting us, and doing a little shopping. 8) I really enjoyed the visit (and, I got to see Grammie twice in 1 week!). Lastly, a quick story about a stranger. My friends Julie and Tim (from college days) have been faithfully praying for us. Tim's job puts him in contact with tons of people. He met a man, John M., who lives in Ireland and whose wife is fighting cancer. He and Tim talked about me back in March/April, and John said that he would be praying for me. His and Tim's paths crossed again more recently, and John remembered me, asking how I was doing and saying that he was still praying. Isn't that amazing how God is demonstrating such lovingkindness in that He continually reminds people, even strangers, to pray for little ol' me?! God is so good.

Sunday, September 13, 2009

Cycle 4 - Big Guns Treatment

I am so behind on blogging but am going to try to catch up. Two weeks ago, I went to Boston for my "big guns" treatment after a forced week off for my body to rest. My brother Jason drove me down and stayed, and God sent just the right person to accompany me. We knew when I headed out that I would not be staying on my normal hospital floor with the nurses that I've been working with over the last 4 cycles. However, I was told that the double room I would be staying in would not include a roommate so Jason could stay. I was still feeling kind of bad about this; I wasn't going to be in familiar surroundings with nurses who have become friends. I was wondering why God would allow this additional trial, and then He reminded me, "This isn't all about you." I realized that perhaps there was somebody new that I was going to meet that God would enable me to encourage...maybe a nurse. (Ironically enough, less than an hour later, Jason pointed out the same thing.)
So, when we arrived at Ellison 14, it was so different from what I am used to...much more hospital-like. Poor Jason didn't have anything but a chair to sit on; he used my bed for a footrest. My nurse was really nice and had been working oncology for 12 years (a blessing as I was comfortable with her administering my chemo...Thank You, Lord). And I also found out that I was going to have a roommate. Jason ended up sleeping in the lounge on a cot, and he was so gracious about this. My poor roommate was having a lot of cancer-related issues that they were trying to figure out and was in a lot of pain and very weak. We were able to talk some, and because I had such energy, I was even able to help her. Sharing a room with her also helped me take stock of my situation and realize how fortunate I am. She will be battling cancer for the rest of her life, off and on. I don't believe that will be the case for me.
The most amazing thing about the whole trip was that I took the chemo so well. I got out of the hospital 1 day early, and I was even able to walk out to the parking garage! This hasn't happened since my first big guns treatment. Praise God! I was exhausted the next 3 days, but I didn't have any nausea and was able to eat decently...truly amazing.
So why was Jason the perfect companion for this trip? Well, I certainly appreciated the great conversations that we had. How often do you get to spend lots of hours on end together, allowing for conversation beyond the "quick catch-up" to happen. This was a blessing. Also, he was so easy-going about us having to fly by the seat of our pants and not having comfortable accommodations. I knew that he really didn't care, so I didn't worry about it. So, this was a memorable chemo trip.

Friday, September 11, 2009

my friend, Laurie

I have been blessed. My cousin-in-love introduced me to a new friend last March, Laurie. We quickly became dear to each other as she shared with me in our experiences with cancer and more importantly, our love of God. God used her to encourage me, continually drawing my eyes to Him and giving me a prayer partner. She was/is such a treasure, radiating Christ's light and love. What I find amazing is that even after her death (about a month ago now), God is still using her to impact me. I still think of things we talked about, words of encouragement she shared, and the spiritual legacy that she has left behind. I pray for her husband, Greg, and their children as even though they know Laurie is now in the best place ever, they miss her terribly. I highly recommend that you read the blog entry that can be accessed by this link. It is BEAUTIFUL, not a bit morbid. What perspective.

http://upapaddle.blogspot.com/2009/08/most-beautiful-bride.html

Wednesday, September 2, 2009

Photos

The kids are getting big, and I thought you'd appreciate these photos. Lyndsey was thrilled to be able to hold Ethan (while not sitting on the couch). Her confidence about what she can do with him, e.g., standing up, scares us. In the bottom picture, she was helping Anderson hold Ethan. Note the outfit she is wearing, particularly the shoes; she has quite the sense of style! Anderson was a little worn out from his first real day of school, which explains the look on his face. It's been an exhausting week for many of us.




First Day of School

We went to Orientation for Kindergarden on Monday. Anderson was apprehensive but also excited. He said that he stopped feeling nervous once he realized (in the classroom) that he already knew who his teacher is. (He had talked with her at the screening.) He was very well-behaved and attentive. It was great to see the other kids he'll be in school with.
He also showed us a new trick. He went across the monkey bars many times...so strong and steady. I enjoyed watching him confidently figure it out. His repetitions reminded me of when he had just learned to walk and discovered the ramp at church. Back then, he practiced walking up and back down the ramp until he was satisfied that he could do it well...practice, practice, practice.Here is a picture of his first day of school without parents. He and Dakota waited for the bus at the end of our driveway. (See how big his tomato plant is that Uncle Jason gave him? We've enjoyed lots of tomatoes.)Anderson boarded the bus without even looking back. He's such a big boy! He learned that the bus ride to school can be VERY noisy. Day 2 on the bus wasn't as disorderly. We thought mornings might be rough for Anderson as he likes to sleep in. He has been doing a FABULOUS job getting up with the alarm and tending to business so that he can meet the bus. He's very tired this week, but we know this will all soon be old hat for him.
What do the rest of us think of all of this? I'm amazed that I haven't felt really sad. I can't believe I have a child in school, but I am really excited for Anderson's new adventure. The challenges of helping him process what socially goes on at school are interesting, but God is guiding me and Bob through it. We're thankful that Anderson is so open about what he's experiencing. (The poor kid has to tell his stories twice as Bob wants to know all the details after dinner.) I've really enjoyed time with Lyndsey one-on-one. This is a new and much-needed opportunity, particularly in light of all the chaos of the last few months. Tomorrow, we're going to the library, and Lyndsey keeps asking if Denise will come too. She can't imagine going to the library without Denise. 8)








Teeth


Anderson lost his second tooth while I was at chemo, the week before he started school. This one he was brave enough to pull out! He saved it on the windowsill until I got home (more because bed time can be so hectic than for my benefit). The tooth fairy rewarded him with $1!


Wednesday, August 26, 2009

Delayed Treatment

This is a bit late, but as many of you know, my treatment last week was delayed until this week due to the signs that my body was giving off that it needed a break. I wanted to share with you how this was so clearly an answer to prayer, even though it wasn't the answer that I really wanted. (The last thing I want is a longer schedule.)
1. The details of how it happened were so strange, making God's hand in it even more obvious. I ended up not hearing about my blood work Mon. night and as a last minute thought, called JudyAnn to double-check that there wasn't any miscommunication (even though it's very unlikely that the hospital would have notification that I was coming if the blood work hadn't passed). When she called me back after I found out that the bed was already ready (VERY rare), she asked how I was doing. I gave her my report, which led to a call to Dr. Choy and the decision for me not to take chemo. I was totally shocked by this.
2. Mom and I had been praying separately that God would give Dr. Choy wisdom. Until this incident, he has leaned more toward treating me in a manner that has proven to work for people with bone cancer. His decision moved me out of the regular group and into my own category. I hadn't even remembered to tell him that the kids and Bob were sick, which would have probably made his decision that much easier considering my immune system really drops with this treatment.
3. I had also started praying that God would help me to not fix my hope on the end of treatment but truly on Him. I know that it's OK to look forward to the end, but there is a line that I could easily cross where my hope would truly not be in God but rather in circumstances. What good is that? God can control the circumstances, and putting hope in circumstances just leads to disappointment, ultimately. There's no way we can know what is going to happen, but God is always consistent. I am thankful, though, that the end of chemo seems to be drawing closer and that we believe we'll be entering a time of healing for our family (my body, the family routine and time together, raising the kids together rather than so much being on Bob, family involvement in activities with other friends' families), maybe even a return to a somewhat more normal life but hopefully forever changed in good ways by what God has been teaching us. So anyway, along with putting off my treatment, my schedule will be really up in the air, taken week by week. How's that for not being able to hope in the end (being the last week of Oct.)? It might not seem like much difference, but not knowing whether I'm staying or going over the next month will really maintain my sights on God, I believe.
So, there you have it. Answered prayer as well as answered prayer that I didn't even think to pray - God helped me see the good in the delay and not get too discouraged.

Thursday, August 13, 2009

Medical Updates

The methotrexate hasn't hit me as hard this time, and I am so thankful. I'm exhausted as I was awakened frequently both nights. One of my awakenings was thanks to a doctor who woke me up to inform me that he was on the floor if I needed anything. "Besides my waking you up, is everything OK?" I was so out of it, I didn't even know how to respond. Mom heard the whole thing and was biting her tongue for all she was worth. After he left, I had fully awakened and then couldn't get back to sleep, so I had to take Adivan (anti-nausea drug that also helps with sleep). Adventures in chemotherapy.
I still have the thrush, so we're going to try another 5 days of anti-fungal medication. If it doesn't work, I'm stuck with keeping it at bay using the troche (like a lozenge) for the rest of my treatments. I'm hoping to get rid of it. It leaves a really gross taste in my mouth and makes eating that much more difficult 'cause things taste gross from it (especially water). So please pray that this will go away for good.
I have mouth sores again, but so far, they're not as bad as last time. They hurt, but I can still eat and swallow even though they are under my tongue again. I kept cold stuff in my mouth for 2 hours while the methotrexate was being administered, so maybe that helped some. Another prayer request - that these mouth sores will heal quickly, before the "big guns" treatment next week as that is when my immunities really drop and they could get much worse (like last time). (By the way, Lyndsey has a cold, so please pray that I won't catch it. She's very sneezy and has a runny nose...tough to stay away from those germs! God did keep the rest of us, perhaps with the exception of Ethan, from catching her flu bug she was battling last week.)
My eyes were wicked bloodshot this morning. They tend to get blood shot the first morning after treatment, but this was much worse and not fitting the same timeline. The dr. isn't concerned, and they aren't burning or dry. So, this is just a case of being unattractive. 8)
I do not need a blood transfusion at this point in time. My red blood cell count is still in the upper 20's, which will hold for a little while. Whew! Speaking of blood, I had a really weird experience with my port this time. The great thing about the port is that they take blood from it as well. I don't have to get stuck with a needle again; I barely even know it's going on. I guess that sometimes when I'm sleeping, the blood will go into the vile really slowly until I take a deeper breath, and then it gushes in. Well, this time when they were taking blood shortly after I arrived at the hospital, the blood just wouldn't come out. They tried having me take deep breaths, move my head (which affects the position of my neck where the tube goes through to the major vein), but it was just a trickle. At some point, I moved/relaxed just right, and the blood started flowing well. I was told not to move, and we got the viles filled no problem. It's kind of a weird feeling to know that blood is supposed to be coming out, but it isn't. As long as they stick me with a needle to retrieve it. You know how much I love needles.
Speaking of needles, I got my shot last week that shuts down my ovaries. (This is a HUGE needle, and I have to take it in the butt muscle. It's once every 3 months.) I was dreading getting it, but with God's help (and the EMLA cream), it was no problem. Thank You, Lord!
Dr. Choy and I had some lengthy discussion about the game plan from here on out. My body is indicating the toll of the chemo (frequent blood transfusions, mouth sores, ringing in ears), so they're going to ease up a bit. He's going to decrease the amount of 1 of the chemo drugs. Also, if my counts aren't right prior to an upcoming methotrexate treatment, we'll just skip it rather than putting it off a week and then resuming the regular schedule. I really feel like this is an answer to prayer in that I've been asking God to guide the doctor's decisions about my treatment.

Adventures for Aunt Dawn

The kids spent 2 nights at Uncle Jason and Aunt Dawn's house and were upset to leave today (to come home). It was great in that Lyndsey barely even knew I was gone to Boston, which was much easier on her. This also gave Bob a chance to recharge by having some down time and hanging out with friends. We really appreciate Dawn's sacrifice of taking on 3 kids while being pregnant, and boy, did they have some adventures (beyond just trying to get Lyndsey to eat her dinner).
Tuesday night, Anderson's first tooth fell out, but he didn't even know he had swallowed it. Dawn hadn't realized it was that loose or would not have given him an apple to eat; she felt bad! She quickly recognized Anderson's nervous response to her reaction and reassured him that other people have swallowed their teeth. Anderson thought it would be fun to not tell Mumma or Daddy and see if they noticed when they saw him. I even tried to trick him into telling me if he'd lost his tooth yet, but he was too smart for that.
Also Tuesday night, Ethan decided to roll over in the crib and sleep on his belly, little bugger. For those of you who might not be up on the latest theory, babies are supposed to sleep on their backs. We haven't had a problem with him rolling over in bed at home because he's still in the bassinet. We hope to have Lyndsey's princess bed ready soon so that she can move into that and Ethan can have the crib, giving him more space to move around when he's sleeping. So, Ethan's antics left Dawn trying to decide how important it was to keep him on his back and what she should do.
Wednesday, Dawn brought the kids to Cassie's house to play with her kids. They have a pool, and Lyndsey decided to go down the slide. (She had a life jacket on.) I don't think that she realized what would happen when she got to the bottom. She informed me that she did NOT like it, that it was scary. She survived her face going under the water (and being out of control) and followed Cassie's coaching to "swim" to the side of the pool, that she was OK.
Wednesday night, Jason built a campfire, and the kids roasted marshmallows. They saw a porcupine come out of the woods. (Lyndsey calls it a "pokeypine" because it has little pokies on its arms that can "get you and hurt".) Anderson told me that it smelled the marshmallows but then when it smelled the people, it decided to go back into the woods.
Today, on the way home, Dawn had a fender bender...yet more excitement for the kids. They got to see a fire truck, ambulance, and police! I was really amazed at Dawn's presence of mind in telling them to stay in their seat belts and locking them in the car while she talked to the police man. I'm not sure I would have thought of locking the doors, but I will remember it! (By the way, everybody was fine and hopefully the car won't be much to fix. The air bags didn't go off, which was good.)
So, the kids had a great time having a sleepover party at Aunt Dawn and Uncle Jason's house, and Aunt Dawn will certainly sleep well tonight! She is such a trooper.

Tuesday, August 11, 2009

More tidbits

OK. So we played bocci last night as a family. Anderson insisted on it since Mumma could play too. (That made me feel so good.) I lost, but as I was heading up the stairs, Anderson said, "Mumma, you played bocci pretty good for a cancer person." What an encourager!
We're going to try another round of antibiotics against the thrush...5 days. If it doesn't work, I just have to put up with it until this is over. The troche do help some; they just haven't cured it. In spite of my efforts to gain weight this week, I didn't. I didn't lose any either though.
I was talking with Melissa the other night on the phone (a rarity these days - boy, was it nice to have girlfriend time with her). Some of what we talked about was how God is probably using this trial in my life in much larger ways that I could even dream of. I had lost sight of this phenomena that is often true when we look back on hard times, and I really appreciated that Melissa was reminding me of this hope (as in a certainty that I'm looking forward to, not hope meaning something I wish for). I know that He can see the big picture and has awesome plans, but sometimes I forget to dream about it. I was telling Melissa that sometimes I wish I could know some of the specifics of how God is using this season as it would be so encouraging. It's nice to hear that others are encouraged by what we share or by what they see, but to know of specifics in people's lives touches my heart on a different level and gives my heart courage. Well, God provided some specifics through a very special letter from my Dad. Isn't that cool?

Monday, August 10, 2009

God's Provision

Well, we had a busy weekend, which meant that I've slept a bit better. Sat., we were able to go to Bob's grandmother's 90th birthday party up in Maine. I was amazed that I was able to do it, and thankful. "Gigi" looks great; we haven't seen her in a long time. I was also pleased that she got to meet Ethan. It was nice to see family and for the kids to be able to play with their second cousins. They had a lot of fun. Lyndsey fell in the lake but God protected her. Where she fell, it wasn't that deep, and Daddy was watching nearby. Talk about a heart attack though. Bob and I also had some quality time while driving in the car, something I've been craving.
I only ended up with 1 little mouth sore. Thank you, Lord! I know that this is a result of prayer. The thrush is pretty bad, but I'm trying to be tolerant and not let it get to me. I have 2 medications to try to keep it from getting worse.
Sunday, Bob and I got to go on a date while Mom and Dad stayed with the kids. We went to see the tall ships in Portsmouth. It was so nice to spend time with him. I've really missed that a lot and look forward to after chemo when things can be a bit more normal. We're getting closer to it.
Today, I miscommunicated and ended up with the kids all by myself, and God provided the energy I needed. I took all 3 to the library for the end of the summer reading celebration, and I was really surprised that I could manage it. Thankfully, God was giving me a day of decent energy (and the kids were well-behaved). I had help this afternoon and took a long nap; I was pretty tired by then!
So, I'm thankful for the ways that God has provided, especially in the area of my perspective and emotional health. It has been a rough few weeks, so the reprieve is much appreciated. Maybe the next few weeks will be easier. Regardless, I need to keep rehearsing what He has done, knowing that there will be more as well.

Thursday, August 6, 2009

Kids Update

Ethan is now 14 pounds, 5 ounces! He's in the 50th percentile on the average child chart, 25th percentile for length and head circumference. He continues to be a joy, full of smiles and babble.
Lyndsey has gone weeks with only 1 "accident". Woohoo! She even made it through my being gone for chemo (to my knowlege at least). This is great progress for her. We think the Strawberry Shortcake and Dora undies helped. She's under the weather right now, so please pray that she (and the rest of us) won't get sick.
Anderson has his first loose tooth! I can't believe that it's happening already! He's been listening to lots of stories this summer, encouraged by our weekly trips to the library and the reading competition. He's hoping he'll win a pop-up tent. Some time soon, we need to fit in school shopping as the first day of kindergarden is Sept. 1.

Sunday, August 2, 2009

Transfusion/Health Update

Thank you for praying about the mouth sores. They are nearly gone, and I am really appreciating being able to eat food that requires chewing (even if it doesn't taste right)! I get my methotrexate treatment this week, which is the one that causes mouth sores. So please pray that I won't get more. They hurt so badly! Also, I think that I lost weight from the days of not being able to eat much. Please pray that I'll be able to put it back on; I'll know Tues. when they weigh me in.

The transfusion was difficult. I had a reaction to the platelets which caused itchy throat and persistent cough (sort of like a mild asthma attack). They gave me Benadryl via IV to counteract the reaction, but I needed more to do the job. This led to too much, which put me into a stupor followed by 1/2 hour of flailing arms and such due to the adrenaline. God helped me cope, but it sure wasn't fun. I still don't feel like I've bounced back from it. The oncologist says it might also be "helped" by a steroid they probably gave me. (My transfusion was in Exeter.) So, I feel shaky, weak, emotional, and panicky at times. With each day, the shakiness and panic feelings in my chest seem to be lessening. Thank You, Lord. I am really struggling with all of it though. It's hard to tell my brain that my body is trying to trick me into thinking something is wrong. I have been doing a lot of reciting Scripture about not worrying and about God's love for me. He has plans to prosper me and not to harm me, and His "precious" thoughts toward me can't even be counted. God knew that this was coming and has me in a Bible study with Julie about loving God with all your mind (taking thoughts captive, meditating on things that are true, pure, lovely, etc.). This is good. I was really struggling this afternoon and had 3 hours of quality time with God. God used this prayer/reading time to minister to my soul. I do feel like I rested in Him. Please pray that I will be able to do this moment by moment, particularly as I near my treatment this week. I do not feel ready for it, and that's a tough way to go into things. God can turn things around though.

The thrush is still persisting. The dr. and I will need to have a talk about it on Tues. I'm still rinsing with the Nystatin and will try Deanna's spicy suggestion.

My eyelashes and eyebrows are nearly gone (the eyelashes more so). I haven't even cried about it, so to me, that's evidence that God is growing me. I am thankful for a number of things related to this loss.
*My eyelashes aren't poking me in the eyes anymore due to not having any structure to hold them in the right direction.
*My eyelashes and eyebrows are so light that most people don't even seem to notice.
*I can see baby eyelashes trying to grow in. This reassures me that when all this is over, they'll come back.

Well, I guess that's all for now. Lyndsey wants me to look at pictures with her.

Friday, July 24, 2009

Funny Kids

Ethan has started blowing raspberries today. The funniest thing is that when Ely (Christine's little 2 month old) burped an Ethan-sized burp, Ethan laughed out loud. Can you believe that it's starting this early?! Oh no!

Anderson woke up with a belly ache. I asked him if it was because he was hungry. He said it was. I remembered that he didn't eat a whole lot for dinner, and he reminded me that he didn't have dessert. He insisted that "no dessert" was the reason for him being hungry. "Actually, I didn't have dessert all week!" he remembered. Poor child...and no, don't believe him. His desserts were during the day rather than after supper.

Lyndsey told me she was going to comb my hair. I asked her how she would do that since I don't have any. She said, "I'll comb yours sparklies" very matter-of-factly. So, we sat on the couch, and she combed my head. She then proceeded to try to put barrettes in my hair! As she was working at it, I could hear her whispering to herself, "Put the barrette in the sparklies." Good luck, Lyndsey! She ended up giving up and putting them in her hair.

Monday, July 20, 2009

Wakeful Thoughts

Yep, it's the wee hours of the morning, and I should be asleep. Unfortunately, chemo can have that affect - sleeplessness. I've taken medication the last few nights but am trying to fight it tonight, especially since I didn't nap earlier today. Ah well, I guess this is the time for this blog entry. Good thing my snoring hubby sleeps soundly. 8)
I'm listening to my iShuffle (thanks to my cousin, Melissa!), and the song that came on (Casting Crowns, I believe) made me think of a blog entry that has been brewing in my mind for weeks now, basically since last methotrexate treatment. The song says, "...And all the tears I've cried, You hold in Your hand. You are Who You are, no matter where I am." These words about God's tears have new meaning to me, particularly in light of a sermon that my cousin-in-love, JeriLynn, shared with me. Her pastor is doing a sermon series on the beatitudes (blessed are the... for ..., in Matthew). The one she was sharing about was "Blessed are those who mourn, for they will be comforted". [JeriLynn, I won't do this justice, and I'm working on the memory held by chemo brain, so please feel free to add to the comment section for this post with more details.] Anyway, some "notes" on this truth from God. Blessed - a concept very familiar and common in the Jewish culture. They would "bless" people, food, perhaps as an expression a step beyond thankfulness? "Blessed" is a good thing, a recognition of God's demonstration of His goodness. Anyway, mourning leads to comfort. As I was thinking about this, the verse in 1 Cor. comes to mind where we comfort with the comfort we have received. I have definitely experienced this on both ends; receiving and giving. We will definitely have a new level of giving comfort through this whole experience. How much better is the comfort that, rather than from man, we receive from God Who knows us intimately - our truest needs, hopes, disappointments, the very core of our being for He lovingly and uniquely created each one of us. That leads to the last (and biggest, in my mind) thought...God mourning. When Jesus died on the cross, He was separated from God because of the sin that was yours and mine that He took upon Himself, bearing the consequences. When this happened, the thick curtain that separated the Holy of Holies in the tabernacle from the outer region was torn in two. This kind of tear didn't just "happen" because the material was worn; it was an expression of God's sorrow, His mourning. Think of King David and how he mourned (in step with Jewish tradition). He covered himself in ash, tore his clothes, put on sackcloth. Well, the curtain tearing was God "tearing His clothes" as He mourned (as well as symbolized the removal of the separation that our sin created from relationship with God, made possible by Jesus' sacrifice). This thought has been eye-opening for me as to the level of God's understanding of my human experiences with grief. Obviously, He's God; He understands. However, I think that there was a part of me that doubted His level of understanding...crazy me. And the good news, God's mourning over separation from His Son didn't stop there. Jesus conquered death and the weight of our sin! He rose from the dead and was reunited with His Father in heaven, preparing a place for you and me if we choose to recognize our need and Jesus' ability to free us from our sin. Thank God that He is not still mourning and that we can be in a relationship with Him.
Now back to sleep, I hope.

Wednesday, July 15, 2009

Chemo Escapades

We left the house Tuesday at 11:30 to have time to drop off kids in Maine and get to Boston for around 3:00. Upon arrival at 3:30 (after a yummy stop for ice-cream - first time I've wanted it since chemo started), we were informed that they had tried to reach me to tell me to go back home until tomorrow. The patient in "my room" had not been discharged. So, plan B was to have me use the room that was being serviced, except that the newly waxed floors were giving off a lot of odor. Plan C was to wait for a patient to be discharged at midnight and wait for his room to be cleaned (ready around 2 AM). The thought was that we would wait in the solarium (normally a waiting room for friends and family) for 2 hours. That turned to 3 hours, which turned to 4 hours. The solarium was closed off to others as my port had been accessed, and the view is great. The temperature wasn't though. Finally, at 9:00, they rolled a hospital bed into the solarium for me to rest in and so Mom could lie down on the couch. By that time, I was exhausted and had a headache (still no chemo). At 10:00, they decided to try plan B if I could stand the fumes. I checked it out and decided it would be fine. I started chemo at midnight, which ended at 4:00 or so. I did sleep off and on, but it was quite the crazy night. The nap today was much needed. (The staff felt awful and gave us some vouchers for parking and flowers.)

A death in the family

While Mom and I were in the hospital last week, Bob handled a death in the family. Lyndsey's precious baby (boy) doll "Abby baby" (named after her friend, Abby, who gave her the doll) lost his leg for the second time. (The stitching holding the plastic leg to the cloth body let go.) We had seen this was in the works and weren't sure how to remedy the situation. Aunt Paula tried resewing it, but it didn't work. So, Daddy told Lyndsey that it was time to throw Abby baby in the garbage. He didn't leave her any choice but compassionately helped her pray for Abby baby to have a safe trip to the dump. 8) Lyndsey did fine with it, even after Aunt Carol mistakenly put Abby baby's overalls on Ethan the next day. Lyndsey noticed but was more confused about it than upset.

Adventures in Babysitting

We have really enjoyed having my cousin, Denise, helping us on Mondays. Since Denise's "children" are her kitties, she's been having a lot of fun and learning a lot. Ethan has been initiating her in the ways of babies, particularly with regards to spitting up. The first week, Denise used the burp cloth sometimes and ended up with a shirt and lap doused in stinky spit-up. The next week, she laughingly pointed out that she now knows the importance of a burp cloth at all times. Well, Ethan managed to miss the burp cloth and land his spit up on her arm, butt, leg, and the floor. It was a magic trick we didn't figure out. The third week, Denise got smart and brought a change of clothes with her. (Nobody likes smelling like spit up all day, especially the kind with formula in it-stinky!) Well, she didn't even need them because she was prepared! Isn't that just like motherhood?! As she was leaving, I had Ethan on my lap and realized he had pooped out the diaper, onto his cloths, and leaked onto my cloths. So, it happens to me too! 8) At least Denise missed out on that one!

Sunday, July 12, 2009

Medical Updates

The blood transfusion went well and I'm still feeling the effects of it. I am thankful. I tire but haven't been napping every afternoon. My activity levels have been a bit higher than normal too. Dr. Choy says that we need to minimize the number of transfusions, for those of you who are wondering. Also, he said that I'm not supposed to rebound as quickly from treatments on this last stretch as my body has been beaten down so many times. Let's pray that God will prove him wrong. 8)
Weird things are happening with my hair. The hair on my legs STILL has not fallen out. Doesn't that seem like a cruel joke? (I guess it doesn't really matter since I'm too cold to wear shorts anyway, except today.) The hair on my head is all new stuff, evident by the lighter color and the soft texture. Apparently, it grew in while the older hair was falling out. Don't get me wrong; it's very sparse. However, it's encouraging to see my hair growing. (This next treatment will knock it out again.)
My body seems to still be battling thrush. I finished the medicine for it and even though it hasn't come back full-force, I believe I see/taste evidences of it. I'll talk to the dr. about it this week when I'm back in Boston.
I had a physical therapy appt. 2 trips to Boston ago. She gave me new exercises, which is good. They're definitely challenging. Please pray that I will be diligent doing them. This is very difficult. I have also given up the crutch for a cane. It's more challenging to use, but I think it will help me stop some bad walking habits. The problem is, I can't lean on the cane when I'm tired!
My appetite seems to be pretty good. The taste buds are a bit more normal. Last night, I ate a lasagna and ENJOYED EATING!! It was a mean lasagna. I actually had 2 large helpings and a lot of pieces of bread (and salad). This was very encouraging.
The ringing in my ear(s) is still there, so Dr. Choy has decided to reduce the amount of cisplatin (chemo drug) as it can cause hearing loss. I don't think I've lost any hearing capacity, but I'm glad the dr. is listening (can't say I care for the ringing in the ear either).
My shots are going well. Yep, the one a day isn't bothering me (with EMLA cream). Woohoo!

Monday, July 6, 2009

Ethan Wakes

Ethan loves to wake up very slowly. I finally got some footage of it. I think that the total wake-up time, with some prompting, was 15 minutes. I didn't tape every minute of it, but if you want to see some cute baby footage, check it out. Note that even though it had been over 10 hours since Ethan had last eaten, he didn't cry for his bottle. God has so blessed us with an easygoing baby.






Sunday, July 5, 2009

Blessings Abound

OK, the scoop on the transfusion is that it went well (took over 7 hours), but I didn't feel like a "new woman" until today. [Today I actually did some scrapbooking!!!! Woohoo!!!! This is the first time since chemo started and was very encouraging to me to have the energy to delve in.]This delayed energy surprised me, but God was so good about helping me maintain perspective and rest in Him. Holidays can be especially tough, especially when I don't have the energy to celebrate like I'd like. However, 4th of July was alright. We ended up going to a party with friends late in the day and saw some great fireworks. I forgot my crutch at home (how's that for chemo brain?) but managed without it. For a few minutes of the fireworks, I forgot that life isn't really normal right now. Thank You, Lord.
I was also really encouraged at the party, besides being with friends, in that I met somebody whose brother-in-law had the same rare cancer as me. Ten years ago, he found a dr. who would remove the bone with the tumor (which was encapsulated like mine) rather than amputating his leg, and he has been cancer-free ever since. This was really good to hear about and made me feel hope since most stories seem to be about people whose cancer comes back at least once. It also made me thankful that my cancer happened now rather than 10 years ago! My oncologist had told me that chemotherapy and such has come a long way, and this is a prime example.
On a different note, I thought that after my last treatment (last cycle), the cells on my tongue were dying and sloughing off. My tongue turned white and felt like it had been burned leaving little taste. Well, I "happened to" mention it to my nurse this last week, and she informed me that I had thrush and that it could have gotten really bad, going down my throat and into my digestive tract. Thankfully, God spared me from that. It has started to come back again, so I'm taking Nystatin. It's a disgusting mouth rinse that I'm really thankful I don't have to swallow. Hopefully it will truly kick the thrush as I suspect that last time, my body only got the upper hand for a while instead of truly overcoming it (due to the lowered fighting power of my immune system).
Lastly, my shots have been going better. The dr. changed the prescription so that I only need 1 shot per day. I'm not sure if Bob is getting better at giving them (he's been reading up on how to make them less painful) and/or God's been gracious in relieving me of the high stress of it. Regardless, I'll take it. I'm so thankful to not be struggling with that right now. Thank you for praying!

Thursday, July 2, 2009

hospital update

quick thoughts...so tired. Still in hospital for blood transfusion...scheduled for tomorrow 6 AM hopefully. A. Carol just left, Bob here soon. God is sustaining me.

Friday, June 26, 2009

Prayer

Have you ever felt like you've just run out of words for God, like you just don't know what to say even though your heart longs to communicate with Him? There definitely are times when we need to be still before God and listen (one of my weaknesses, for sure). There are also times when Satan tries to deceive us about the futility of trying to pray. He knows that it's part of putting on the armor of God (Eph. 6:18). So what do you do when the words of praise just aren't there, when all that is left is pleadings about the circumstances?
We pray. God wants to hear what is on each of our hearts, and when all that is there are the pleadings, we ask for more. More awareness of what God is doing and has done, more understanding of Who He is, more focus on Him rather than me. This has been the struggle of the last week or so. I have found myself lacking expressions of praise and fighting to not just think about myself. What's interesting about this whole thing is that I could list plenty of things to be thankful for, but my heart was yearning to just be in His presence and worship Him. So, I asked for more. Want to hear how God provided?
The first provision was a book written by the author of the poem "Footprints". The verses, poems, and thoughts in it have walked me on paths through His Word. The second was a CD of hymns given to me by a friend. The hymns tend to focus on God, not just my feelings about God, so they have been helpful in redirecting me. The third was a book recommended by a friend. "Praying Through Suffering" contains heartfelt prayers and verses that seem to be serving as a springboard during prayer. I just think it's kind of cool how God used prayer to create a desire in my heart to focus on Him and then also provided the means for me to focus while praying. This is not a done deal; I still have a long way to go. But I'm thankful for the baby steps that He has opened my eyes to see.
OK, now for something a bit lighter - I have to tell you about the kids praying. As many of you know, I've been having trouble getting my Lovenox shots. Last week, Lyndsey was sitting on my pillow while I was lying on my stomach getting ready for the dreaded shot. She reached over and, putting her hand on my head, she prayed, "Jesus, thank you for this great day. Please help Mumma's shot not hurt. All-men". This so touched my heart; I wish you could have heard it. The next day, Lyndsey came into my room as I was getting the EMLA cream "placed" (1 hour before the shot) and prayed again. Then she went downstairs. Later, Anderson informed me that while I was getting my shot, he and Lyndsey were sitting on the couch praying that my shot wouldn't hurt (this time, Anderson's idea). Can you picture that, them sitting side by side on the couch? How precious. This definitely warms a mother's heart.

Monday, June 15, 2009

What a lot has happened since the last time I posted, and I'm surprised at how quickly I can forget God's goodness. I know that my emotional state plays into it significantly.
So, yesterday was a horrendous day, but today was better. I'm struggling with being overwhelmed by this whole process, and my tolerance for things like shots is dwindling with each "blow". Getting the Lovenox shots this weekend was extremely painful and did me in, enough that I broke the rules and didn't take some of them. (Me? Not follow the rules?) The EMLA cream helps me not feel the stick (if it's given in the right spot), but the injection of the fluid stings like crazy and considers to sting afterwards. By Sunday morning, it had driven me to anger, which is not a common reaction for me to pain. I'm questioning whether the "rules" that I currently have are overkill or not, especially considering that there weren't any clots in my legs and the ones in my lungs were so small that if the CAT scan hadn't been so good, they wouldn't have even seen them. Now I certainly don't want to play with fire, but anybody who's been through long-term medical care can probably identify with there being a limit to what a person can take. I've been doing a lot of praying about it, so please pray with me that God will give wisdom and guidance through this part of the journey. I trust that He has my health in His hands, in addition to and regardless of the medications I'm on. I am just not sure how to get from Point A to Point B on this leg of the journey.
Another part of the struggle is knowing when to get the blood transfusion. The dr. said to let him know if I'm still really tired this next week, but how tired is too tired? I know that there are risks to the blood transfusion, and it's a bit more complicated with regards to the blood thinners. We also want to minimize the number of transfusions that I need to have. Another thing that is overwhelming me, another thing to turn over to my Lord and trust Him that He will reveal to me what I need to do and at the right time.
In the midst of all of this, I'm really trying to "count my blessings". God has kept me from being as sick this time, both in terms of nausea and the rate of bouncing back. 2 cycles down. My Lovenox shot didn't hurt this morning (God answered Mom, Lyndsey, and my independent prayers while Mom administered it - found out we were all praying afterwards). I still haven't had mouth sores or thrown up, which is uncommon for healthy, young women. Last night, when I awoke feeling stressed about the shot, God put a hymn in my heart and mind and helped me go back to sleep. God has sent blessings of encouragement (although I have to say that I'm having a hard time truly experiencing them, accepting them. Why? I don't know as I know in my head He is so good. This will pass as I know God will bring me beyond it, but it's another part of the struggle).
OK. Off to my shot and bed. I'm really wiped out.

Wednesday, June 10, 2009

Hospital Update

Well, there is a lot to report; I've had u/s on my heart and legs to cover the bloodclots found in my lungs over the weekend - all clear. I will be having shots 2 times/day for the next 6 months to prevent future bloodclots. The ones in my lungs are not a threat, just a nuisance to breathing (as the heart echocardiogram revealed a strong, healthy heart.) Also, I am not having a blood transfusion at this time.

I'm nauseated but not throwing up yet - thank You, Lord. There are times that I feel like I will but so far so good. I slept very poorly last night as my chemo didn't finish until midnight, and I had been given a steroid as part of my pre-chemo cocktail...not good for sleep. I had forgotten that last time, I had 2 nights of chemo (both drugs), so we go back at it tonight, probably until midnight. I did catch a nap today.

I'd like to share how God is answering prayer. I had been quite stressed out since Monday. As I reflected on "why", I think it was going to Boston for these crazy drugs without Bob and concern about who the nurse administering the adriamycin would be, concern about the bloodclots as well as the multiple shots, just not wanting to go as I've developed some hospital and hospital food aversions. Well, I kept praying about it, and crying, and was so relieved to find out that my nurse, although a new one, had helped with a treatment before and I really trusted her. ALSO, she wanted to hear about why I was stressed. She came up with a great solution for the shots. There is a cream (EMLA) that numbs the skin, which I had picked up for accessing my port as the last time bothered me quite a bit. So, we're now using that to administer the Lovenox shots, and what a difference! Tonight's administrator of the chemo will be Lindsey, one of my favorites. This really helps put me at ease. So, God has shown His faithfulness once again. Please continue to pray against the mouth sores, vommitting, and nausea. It's really hard feeling like this.

Sunday, June 7, 2009

Latest health development

This weekend was tough in that I was at the ER for 5 hours on Sat. to find out that I have "several" pulmonary embuli. Breathlessness was what brought on a call to my dr. and the directive to go to Frisbie for blood work, lung CAT scan (NOT fun), EKG. They're treating it with more Lovenox shots (3/day). I'm hoping that I'll be able to use Cumadin (sp?) instead since it's an oral medicine. We'll talk about it on Tues. when I go down for chemo. Whatever medication Dr. Choy puts me on, it will be for at least 6 months.

I have to say that the news on Sat. was really tough. Another struggle, another obstacle...yet I can also say another opportunity for God to show us Himself. Tough stuff though. I am thankful that they let me go home (since I'd been getting Lovenox shots from Bob after my hip surgery) and also that my breathing has improved. The ER dr. informed us that I could be in a lot worse shape (in a very nice way - I was glad that he told me how it could be). That is definitely something to be thankful for.

More things to be thankful for: We had a McD's picnic with the kids at the park today; it was good to do something sort of normal and just be around them. And, I ate my first Reese's peanut butter cup since chemo treatment started, and it actually tasted good. Until today, I had no desire for my favorite candy (nor ice-cream!), so it was a pleasant change, although temporary.

Are You Chicken?

My old roomie sent me a great care package. In it was a button a lot like the "easy button" but it says "Are you chicken?". When you push the button (which the kids LOVE to do!), it plays the chicken dance song. Yes, it served its purpose and made me laugh. (Video below - Yes, I'm wearing my wig.)





I also really appreciated her note about flapping her wings. It reminded me of our way back at UNH of encouraging each other to be courageous during trying times..."Let me hear you roar!" (taken from "I am woman. Hear me roar."). Back in those college days, a meow was just not an acceptable answer. Well, I'm trying to have courage and flap my wings, a tall order but oh so important. God gave me spunk for a reason; He knows my journey. He also gave me my college roomie for a reason...thanks, Julie!

Ethan Smiles




Sunday, May 31, 2009

Update

Well, a lot seems to be going on and at the same time, we're in the redundancy of "the cycle", trying to take care of myself so that I can get better and be ready to go back for more.

I've been struggling with perspective over the last week. It's been harder to focus on the positive and easier to be crabby and disillusioned. I know that there will be times of more and less discouragement, but I'm also wondering if cancer/chemo has stages kind of like the grieving process has stages. Does anybody have any knowledge about this? Maybe understanding how this tends to work and what might be coming would help me work with it better.

I'm reading "When I Lay My Isaac Down", and it's really challenging me. I've realized that one of the things I've needed to surrender was my dreams/expectations regarding Ethan's pregnancy and infancy. I think that God has just about brought me through that process, and it has been challenging with lots of tears. However, there definitely is more that I need to surrender to Him. Of course, giving up control (that truly is just an illusion anyway) has been ongoing...control of aspects of the kids' daily lives, my schedule, household decisions, how I walk, my health, etc. I hate to think of myself as a control freak, but when everything seems to be out of control, I'm realizing that a sense of control is more of a source of security than I realized. So, I see some hard changes on the horizon, and it won't be me that makes them. Only God can accomplish this, and that brings me to another area where I'm being stretched...trusting God. How absolutely crazy in that He is MOST trustworthy. However, I am human and this is where it's at. I want to trust Him with my days, not worrying about whether I'll have to do more chemo down the road or how I'm going to even make it through this one, but I am not. The book that I'm reading talked about Carol Kent having to work at trusting God with her son 1 minute at a time and then it turned to 5 minutes at a time. I think that's how it's going to be for me, asking Him to help me trust Him 1 minute at a time. This is a process, and it's not going to be in my timing.

On a lighter note, my hair has been short for over a week and buzzed (only 3 mm long) for a few days. Lyndsey touched it right after Bob buzzed it and told me that "it's sparkley", which I thought was very cute. Anderson seems to be doing fine with the change, handling it in his typical reserved way. The amazing thing to me is that my brother, Dan, was right about the no hair thing. He had told me weeks ago that the kids probably wouldn't even bat an eyelash at the change because people tend to see others as they've always known them (sort of by memory of what they have always looked like). Well, I wore my wig for the first time Sat. night, and my kids and Bob didn't even notice! Lyndsey walked into the bathroom, talked to me, and left without a comment about the hair. It wasn't until hours later that she started talking with me about my wig and asking questions like, "Where are yours sparkleys?" 8) Bob had a few minor interactions with me without any comment and then eventually commented in surprise, "Oh, you have the wig on! I didn't even notice!" Anderson wouldn't have commented right away anyway, so I'm not sure when he noticed, and of course, Ethan doesn't care about his Mumma's hair. So, Dan was right. The obstacles with the hair at this point are 1. getting the wig to fit right since it couldn't be done before and 2. learning how to sleep. I've found that my body can't seem to regulate its temperature now that I don't have insulation. I keep waking up, hot then cold. Last night was a bit better perhaps because I didn't sleep with a pillow and left the fan on. It's a work in progress.

Thursday, May 21, 2009

Hair yesterday, Gone today

So, it's been done. I no longer have long hair. It was coming out in massive amounts this morning, so I knew it was time. It was kind of good because I was actually getting mad about all these long hairs that I kept trying to pick off my arms and clothes. So in that sense, I was ready for it to go.
Do I like my short hair? No. But I'm sure I'll be less thrilled with no hair at all, so I'm not going to complain much. The kids don't really seem phased by it, so that is good. Bob said he liked it, to which I grouchily replied, "Don't like it too much." He's always had an eye for short haircuts as evidenced by his pre-Sarah days. 8)

Wednesday, May 20, 2009

Wig Party


Yep. We had a good time at the wig party, although I am EXHAUSTED. The day was a very full one, very emotionally charged even though my hair is still attached. Thank you to all of you who are supporting me through this tough challenge. I am so blessed.

Tuesday, May 19, 2009

Wigging me out

Sarah did not get her hair cut today. The stylist that created Sarah's wig (the one who was suppose to cut her hair), said that her hair was still holding strong. He should be able to pull at least ten hairs from the top of her head, but was only able to pluck two and Sarah felt each one. So, when Sarah is able to pull at least ten hairs then she will get it all cut off. The stylist thinks it is going to be a few more days.
She did bring home the wig today though. And let me tell you it is freaky looking. It looks just like Sarah (as it should). Sarah had put it on our hutch (on the bust) while we ate dinner and it kept catching my eye and freaking me out. She said we are going to keep it in our bedroom ... I don't think so... I am not going to wake up in the middle of the night to be freaked out by this head of hair looking at me. Call me weird but it just wigs me out.

Sunday, May 17, 2009

Tough Days

The last few days have been really tough. I'm still feeling pretty yucky, which doesn't help, but I'm also experiencing a lot of fears and doubts. The fears are that the chemo isn't what my body needs (based on proposed theories about cancer being a fungus and "fed" by what we eat - this might sound crazy, but the possibility that it could be true makes me at least have to look at it) and that I will have suffered through it and it not work. I am struggling with hearing AGAIN "you have cancer (or another tumor)". The doubts about whether I should even do the chemo have been drowning me in tears and constant battle to take my thoughts captive. (Keep in mind that mine is a unique cancer and therefore one that the doctors don't know a lot about. They are treating it like bone cancer, which they do know about, and say my prognosis is good if I do the chemo. Do I trust their judgment? - Notice that I did not say "trust them" as that would be relying on them knowing all, which they can't as they are human.)

OK. So that's the ugliness of my thoughts and feelings, what I'm struggling with. The truths are that God is sovereign (reigns over my body, as small on the universe scale as it is) and knows the outcome of all of this. He can (and maybe has) cure me, and Him only. Focusing on my circumstances is not going to help me get through this; focusing on my God, and Who He is, will help me get through this because that is where my confidence lies - in God and God alone. This is not always how I feel nor even sometimes what I think when I'm "stuck", but feelings do not always reveal the truth. I am praying that God will guide us on the path that He wants us to take, and I would so prefer it not to be chemo. However, the choice is not mine nor do I really want it to be.

In the midst of all of this, there are some weird puzzle pieces that I'm not sure where they fit. It's interesting that twice this past week, "people" had discussions with me that raise doubts about the chemo. As you can imagine, this rattled me. God, what is Your purpose in this? Is it to make me question and then come out more resolved than ever? Is it to change my course of treatment? Is it to make me pose certain questions to the dr.? Is it to make me come to a point where I relinquish more control that I'm not realizing I'm harboring? (I know that giving up control is a theme throughout all of this - "Be still and know that I am God." has been my theme verse since being pregnant.) I also have been reading "When I Lay My Isaac Down", and these verses in Genesis were again brought to my attention from a different direction this weekend. Is there something I need to surrender - my health, perhaps? By this I don't mean not want to be healthy but rather surrender good health to God's perfect plan, whatever that means. Yikes!

OK. So I've shared my personal thoughts, but I really don't want feedback. This request is for my mental health, so please be respectful of it. In general, I really value feedback, but in this case, I really can't work through all the opinions.

Kids Update

Ethan is now 9.5 pounds and in the 10% on the full-term baby growth chart! Dr. H was very pleased with his progress. He has also started smiling; his first one was for Anderson! He doesn't smile all that often, but when he does, we're thrilled. We have also found low-iron formula (supplement for the breastmilk), which is a huge blessing as the other was making his belly very upset. Jason had to drive to Hooksett for it and then we met him in Northwood at 10pm. It's precious stuff! Oh, and Ethan is sleeping through the night: 11-7 at least. He has also decided that he has preferences, so he no longer is the baby who doesn't cry. That's OK though!

Lyndsey is still working on the potty training. It's an uphill battle. She's very good at driving the Hot Wheels jeep, and she's back to unlimited use of her arm/shoulder. She is saying some really funny things, which makes me smile. She is a big helper with "Nefan" and loves him to pieces, literally. She also loves to laugh and fool around with Anderson.

Anderson will be finishing up daycare at the end of June. We went to a kindergarden informational meeting a week ago. I can't believe we'll have a child in school! He's very excited about it. In the meantime, he's been practicing casting (to fish with Daddy) on the back lawn and is very attentive to Ethan's physical and emotional needs. He's also attentive to Lyndsey's needs, although she doesn't always agree what they are. They have started the sibling fighting...great fun. Leader/Bossy oldest combined with Strong-willed second is a tough combo. Wait until Ethan joins the fray!

Birthday Blessings

Boy, did God show His love to me on my birthday; I am humbled and amazed.

The day started with me having a bad attitude. I woke up feeling bad that it was my birthday and I was feeling so crappy. Honestly, I wanted to just bypass the whole thing. However, God quickly convicted me that this was not a good attitude, and I confessed. I proceeded to get out of bed and drag myself to women's Bible study. My energy levels were so low, and I was still battling nausea, but I knew it would do wonders for my soul.

I won't give you the play-by-play, but the day was FILLED with people doing things to just make me feel so loved and special. From cards to well wishes to a birthday party brought to me (with party hats, noise makers, a balloon and flowers, cake, and best of all, family) to hearing my kids sing "Happy Birthday" to me TWICE to gifts including the doorbell ringing many times with somebody delivering plants, fruit, flowers. I was blown away. Perhaps the best part was the many expressions from people's hearts about their feelings of me being in their life. I do not deserve these birthday blessings, but I am so thankful. Who would have thought that my birthday would be so opposite of what I had expected? Isn't God gracious.