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.

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.

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)

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.

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!

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!

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!

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.

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!

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.

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.

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.

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!

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.

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.

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

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.