Tuesday, June 28, 2005

Happy on the beach inSanta Barbara! Posted by Hello

PET scan results

Greetings all! I am coming out of my best round yet (#4). It was not as easy as my “plan”, but it was definitely better than normal. And, as an added bonus, I did not end up in the hospital as I have on my last two rounds. Right now, I am feeling pretty good. Jake has mentioned this before, but the middle ground is hard. I feel good enough to come home, but have to deal with a nagging, upset stomach that is more irritating than painful for several more days.

But, my point of this entry is not to tell you about my symptoms in the game of chemo. I got a call from my oncologist’s nurse, Terre, yesterday with my PET/CT scan results. Our conversation started like this; Terre: “Hi Jessica, are you at a point where I can read you results and you can write them down?” Me: (happy for the call, but worrying about all the stuff I was about to have to write down!) “Sure”, I say. Terre: “It’s all good news.”

And it was. It was the kind of news that just creates more questions, but it was great news. The scan showed no new growth! But better news was the many “spots” that showed up last time, were now showing up as “treated disease”. Terre explained to me that it would be like seeing scar tissue on a scan. It is not scar tissue, but it is evidence that I once had tumor spots and they have been treated , and are essentially not there any more.

In case you are new to my story, I had “spots” showing up on my last PET scan on my breast, auxiliary, nodes in my lungs, kidney, liver, abdomen, spine, and clavicle.

The scan still shows spots on my right breast and auxiliary area (… that’s my arm pit!).

I started asking Terre all these questions that I really just needed to wait until my appointment with Dr. Haley and ask her (on July 14th). Like, what does this mean for my treatment; can I just have surgery now; how many more rounds; will I always see evidence of treated disease or will that go away too…….

Terre kindly directed me to Dr. Haley, and then said that they like to take a scan like this after several rounds to see if they are on the right path with my treatment and on the right cancer drug mix. I think, quite loudly, that answer was yes.

Thank you for praying with me. We can celebrate together this one victory. I am excited about what is to come.

Monday, June 27, 2005

Feeling Better

Jess is feeling much better, and in fact I am too. I think how worn out I have been this last week must have been evident in my recent postings because my mom (my actual mom, not my mother-in-love who is just as much my mom) called me up and asked how I was doing. Then she asked when she could fly down. It doesn't matter that I am turning 29 next month, my mom is still just as much my mom as when I was nine.

Last night Jadyn had her first ever soccer game and she played great (being three years old we weren't sure what to expect). She ran after every ball and scored her first goal. Her big sister Katelyn has been an inspiration to her and she was very excited that she was actually getting to play.

Saturday, June 25, 2005

Jessica is Home Early

Jess came home earlier than I thought she would (last night). The new matress pad and pillow didn't go over as well as I thought. At MeeMaws house the beds are extremely soft. In fact her husband, Popo, knows someone who makes mattresses and so their beds feel really, really good. I should have waited until the next night to put the pad on. Then the conversation could have gone like this: First night, "This bed feels terrible; like a board" Second night, "This bed feels like a board with a mattress pad on it. It's not so terrible." The pillow went worse. In addition to getting a temperpedic pillow, I had gotten an allergy-barrier pillowcase to help with Jessa's year round allergies. I didn't take into account Jessa's hypersensitive nose. "It smelled" she announced (it's now in the garage airing out. As for the pillowcase, it crinkled too much. Needless to say, she did not sleep very well (did I mention the CD I got to help her sleep has a scratch on it). However, I am OK with failing. Through this whole process, there will be even more failures because I am not going to stop trying to make Jessa's life more comfortable. Do you think she would like a water bed?

Friday, June 24, 2005

Rest for the Weary

Yesterday marked the end of Jess going out and doing stuff. She was trying to will her mind over her body, but it ended up being the other way around. If she stays a little longer at MeeMaw's this time as I suspect she might, I may need to take her place over there when she comes back. Yesterday I spend most of the night cleaning up a diaper that had disintegrated in the wash. Do you think that would work? "Hi, honey I'm so glad you're back; I'll be gone for a couple of days recooperating..." Seriously, Jess needs just as much rest when she comes home (it's pretty much culture shock). I'm hoping this time Jess will sleep better-- I bought a thick pad that goes on top of our mattress and one of those pillows that conform to your head.

Tuesday, June 21, 2005

Jessica is Digging It

Normally, the day after chemo Jess could be mistaken for a lumberjack for all of the logs she saws. Instead of snoring the day away today however she was digging balls on the volleyball court tonight. As for me my reaction is half, “What are you thinking—get some rest!” and half “Wow, I so admire my wife.” Not only was it the day after chemo, but she got two shots today one to up her white blood count and one to up her red and she had a combined PET and CT scan. She spent the night here last night, but the next few nights will be spent at the MeMaw Spa and Pampering in Mansfield.

Monday, June 20, 2005

4 cycles down... and a new plan coming

I had a fun time at chemo today with my Aunt Sandy, although I think I slept through half of it! They give me benadryl drip to help me sleep and steriods in each drug that make me relax. It is supposed to make the chemo drugs work better. But, it doesn't make me such great company.

Okay, a lot of family is thinking I'm wierd, but I am going to try a new think with this chemo round and I need your prayers. It usually goes like this: Day 1 (fine) Day 2 (fine during the day; get real tired after 5:00) Day 3 (I am tired and sleep all day and pretty sick to my stomach much of the day, too) Day 4 (little things exhaust me; feeling a little less sick to my stomach) Day 5 (feeling better...on the upswing) Okay, I do not want to do this every three weeks. When I did not have cancer and I felt a little tired, and my stomach hurt, I did not lay down all day. I did what I was planning to do. So sniffles, shmiffles... forge on, I'm a mother! Cancer, shmancer, let's get going!

Even as I write this, I can hear my Aunt Diane, mother, grandmother, husband...cringe. But it is just an experiment. If it does not work, I will go back to my rough 5 days.

So, that is my plan. I am going to rest for a normal amount of time and then I am going to get up, read, go work out, walk, eat small meals, or write thank you notes to all the precious people who help us! It's just an experiment. It's really for day 4 and 5: this time it means Wednesday and Thursday. Please be praying for me these days. I am still doing to take my medicines, just not the ones that knock me out. (Mom, I will still take naps :) I promise)

Thanks guys!

Keeping up with Chemo

Jess went in for her 4th round of chemo today. The chemo is taking its toll on her (although she looks great) because her blood counts were down. Dr. Haley is considering giving her smaller doses every week instead of every three. If she decides to do that, it would mean three weeks of chemo and then a week off. Jess seemed to like that because smaller doses probably mean she won't get as sick. I'm pretty excited about tomorrow because Jess is going to get her second PET scan. If you want you can pick a part of Jess to pray over that it would be cancer-free! Both Jess and I are very optimistic that the scan will be show good results, but you will have to wait along with us for at least a week to get the results back.

As Jess mentioned earlier, we found out she is Her2 negative. After meeting with Dr. Haley, we found out she is going to stay with Herceptin because it is helping as the tumors are shrinking, and she does have a little elevated protien on her cells (something that determines Her2 + or-). Also, Herceptin has very little side effects, and there is no harm in keeping her on it.

Thursday, June 16, 2005

The new port is in

Well, after so much up and down about my port, I finally have a new one in! Dr. Euhus sucessfully put in the new port this afternoon. It is in the same place, just running up a different path (into the jugular vien). I feel sore, but I am feeling even better than I did the first go-round.

When I got my first port in, I did not remember a thing. So, I thought it would be the same for this time. I should have known a little differently when the nurse anesthetist and several doctors came in and said I would feel drowsy and very comfortable, but would probably be awake. I told at least 4 different people that they could just knock me out--no problem--I did not want to feel a thing! However, I was awake for most of it. It was not too bad. I did feel a little pain and after telling them nicely (not really) that it hurt, they gave me more drugs. It was actually pretty interesting to hear the operating room banter. I am also amazed at the number of people in the operating room. No wonder it costs so much; I'm paying for a dozen people's hourly wages!

Well, that's the update! Have a great weekend :)

Wednesday, June 15, 2005

Good news...and we really needed some good news!

I recieved a call from my genetic counselor today concerning my BRACA 1 and 2 test. This is the genetic test that will see if I have a genetic mutation that pre-disposes me to breast cancer. This is also the test that my insurance carrier told me is billed as an "out of network" lab and would require my out of network deductible to be met before they would pay anything. And even after my deductible was met, they said they would pay 50%. Basically this meant I would have to pay for the $3,000 test on my own. The genetic counselor filed an appeal with my insurance explaining to them that this lab in Salt Lake City owned the patent on the gene mapping for the BRACA 1 and 2 genes and are the only lab in the country that can do this test.

So, my insurance changed the lab from out of network to IN!! And, since I have met my deductible, they will pay 100% of the testing!! This is wonderful and a huge answer to prayer because after looking at my policy, I did not see an easy way for them to approve this test. In fact, I read an easy way for them to deny coverage.

This test will help my doctors down the road with my treatment; give me knowledge and forsight to help my sisters and daughers; and it helps to either cancel out the idea or discover why I have breast cancer. It is just an extra piece of good information to have, and I am so excited to not have to make the decision about whether or not to pay the $3000 out of pocket!

The test takes three weeks as the lab will spend a lot of time counting tiny bits of DNA three times over. I amazed at scientific breakthroughs!

Speaking of breakthroughs, I was talking to my surgeon in preparation for this port procedure tomorrow and he mentioned I was Her2 negative. This means I might not keep taking Herceptin like I have been. I was a little sad because this drug Herceptin has been in the news so often in the last few months as being a "wonder drug" for Her2 positive cancer patients. I asked Dr. Euhus if there was as good of drug for people that are Her2 negative. He said there was not one as good as Herceptin yet, but within 2 years, they will have 10 drugs available that will help people as precicely and with few side effects (like Herceptin) that will target every breast cancer cell. This is huge, and 2 years is so short a time to wait. More good news! I could hear this stuff all day!

I will let you know how the port exchange goes late tomorrow evening...

Tuesday, June 14, 2005

Report on the Port

Hi there!

Well for the second time, I went into to Dr. Euhus' office for him to remove my port and it was feeling fine (of course!) So, he decided not to remove it today. He felt it and now feels with certainty that it is not infected. Therefore, he is going to remove it Thursday afternoon in surgery and put a new one in right away.

Before, he wanted to remove the port and let the "infection" heal, then put a new one in. Now that there is no infection, he can remove and replace at one time.

I was kind of wondering why it has to be removed at all without an infection, but Dr. Euhus said there is something wrong, maybe a small hole that makes the drugs leak a little, a block in the line, etc... because it swells up, hurts, then feels fine, swells up, hurts...

So, in the long run this is a good thing. I was a little nervous getting my port out just in the doctor's office with a just a local anesthetic. Now, he'll put me under and do it all at the same time. Also, I will not have to have my chemo round 4 in my arm, they will be able to use my new port Monday.

The port procedure will be this Thursday at 3:30. Thanks for your prayers.

Sunday, June 12, 2005

Fun in the Sun

Jessa and I left Thursday to go her brother Alex's graduation in Santa Barbara, California. Her dad Mike here in Arlington gave us some Southwest passes and her dad Bob in Portland paid for us to upgrade to a Mustang Convertible. Consequently, the two hour drive from LAX to Santa Barbara was made a pleasant one with the top down with temperatures in the 70s. When we left Arlington it was a typical Texas summer in the 90s. Jess and I went to the beach, moped riding (Jessica like it so much she now wants a motorcycle), and to a fabulous dinner after Alex's outdoor graduation. It was great because Jess got to see her brother graduate and we got some much needed time together. I really appreciate Jessa's mom Judy for loving on our kids all weekend while we were gone.

On another note, Jessa's port is infected again. Surgery is tentatively scheduled for Tuesday. I'm having to give Jess shots again, but just once a day. It's just a day surgery so Jess should still be able to do arts and crafts all week at Vacation Bible School.

I got a letter from a pastor and his wife pointing out something I didn't realize in the Meshack story (they even spelled the names correctly). It seems that they were sure that God would save them. What they were unsure about was if the king would change his mind about throwing them in the furnace. Their faith amazes me because in the moment they stepped into the furnace they were able to trust God whole-heartedly.

Wednesday, June 8, 2005

Wonderful friends from our church, Lake Arlington Baptist Church, reminded be that shaving your head is cool by presenting me with this picture and a card reading "We shave for You!" Thank you for your awesome support for a girl who is losing it all (hair that is!) You are all great!! Posted by Hello

Tuesday, June 7, 2005

Busy as a Bee

It has already been a busy week for us. Jadyn started "Nature School" at River Legacy Park. This weeks theme is winged bugs (which makes me glad that Katelyn is not enrolled in it). Although she loves going the mini-camp itself I think the neatest thing for her is that she is the only one doing it. Since the Yikes (Jadyn and Bryn) are so close in age (2 and 3), they do almost everything together. I'm glad Bryn is so easy going because Jadyn frequently says something to Bryn like " I get to go to nature school, and you don't. You have to stay home with mommy and daddy." Bryn doesn't even seem to hear her and keeps right on playing. Katelyn is playing summer basketball, so we signed her up for basketball camp this week because she has never played organized basketball before. She is also playing indoor soccer and Jadyn is playing t-ball for the first half of summer and soccer for the second. I don't think that Bryn will be as easy going when Jadyn starts playing soccer because she loves kick and dribble the ball. In fact, she sometimes wants to go on the field when Katelyn is playing. I like staying busy because it keeps my mind off Jessa's cancer, but for Jess time is going to quickly-- she feels like the next round of chemo is going to be here before she knows it.

About a month before Jessa was diagnosed with cancer, I remember telling a good friend of mine that for me God doesn't speak through other people-- if He wants to tell me something He'll just tell it to me. Well not only does God have a sense of humor, but he also knows I am a lot happier when I am humble (for that matter those around me are a lot happier when I am humble too). For this reason I think He has remained silent in our private conversations with regard to Jessa's future. However, He has told a few other people what her future holds. I remember specifically telling my friend, "No way is God going to tell someone else when he can just tell me." Well, within a few weeks of Jessa's diagnosis, God told a teacher at my school, our pastor's daughter, and a woman in my mother-in-love's and Aunt Sandy's BSF (Bible Study Fellowship) group that it would be hard, but Jess would be OK in a year. For that reason, we have been praying ever since that Jess would be OK in a year. It has already been a hard year, but Jess and I both have hope. There is a story in the Bible where three men are asked by their king to reject their god and worship himself instead. When the three men, Shadrack, Meshack, and Abendego (spelling?) refuse to do that they are thrown into the fiery furnace. Right before they go, they are given one more chance. Their unanimous reply is that God will save them. I believe that God is choosing in this instance to heal Jessica completely.

Saturday, June 4, 2005

Getting From Point A to Point C

I think Jess and I are both struggling with being at point "B." Point "A" are the first few days after chemo when we know she is going to be sick; point "C" is when she is feeling better. The problem is there is over a week in between. We prepare for point "A" and we look forward to point "C" but point "B" just might be the hardest because all we can do is wait it out. For Jess it is hard being able to go out but then having to take time out to rest (or sleep). For me it is hard giving up control and letting her decide when it would be a good time to do that (rest). We definitely made progress toward point "C" today. We went and worked out at the YMCA today and went to a carnival at Katelyn's school put on by the church that meets there on Sunday. One of the neatest things about the carnival was that we had several people we had never met before come up and ask if my wife was "Jessica Kaylor." This church has a heart for asking God to heal Jess and they "knew" her because they had been praying for her. Actually Jess meets people all the time that have already been praying for her which is pretty cool becayse praying for Jess's healing and us coping with her treatments is the most important thing people can do for us.

Friday, June 3, 2005

New Prayer Calendar

Here's the prayer calendar for June:

1st Pray for God to heal completely 2nd Pray God’s word will comfort and revive them Psalm 119:50 3rd Pray God’s Word will light their paths Psalm 119:105 4th Pray they will draw near to God 5th Pray they will find God’s grace sufficient II Cor 12:9 6th Pray for rest Is 40:28-31 7th Pray they will trust God’s hand Is 49:16 8th Pray they will know the Lord is near Psalm 34:18 9th Pray they will thirst for God and be satisfied Psalm 42:1 10th Pray they will seek the Lord and call on Him Is 55:16 11th Pray they will believe God John 14:1 12th Pray they will abide in Him and bear fruit John 15:7-9 13th Pray for contentment Phil 4:11 14th Pray they will trust God to carry them Is 46:4 15th Pray they will cast all their worries on God II Peter 5:7 16th Pray for healing Jer 32:27 17th Pray they will stand in his His strength with joy Jude 24 18th Pray for rest Mat 11:28 19th Pray they will wait for the Lord Prov 20:22b 20th Pray they will be filled with praise (Jess has chemo today) 40:3 Pray for healing Jer 17:14 22nd Pray for God to go before them Deut 31:8 Pray for family harmony Col 3:13 24th Pray for God’s care Ezek 34:11-12a 25th Pray they will trust the Lord Jer 17:7-8 26th Pray God will work all things for their good Rom 8:28 27th Pray God will remove all fear Is 41:13 Pray they will know God’s care Job 10:12 29th Pray they will fix their eyes on Jesus Heb 12:2 30th Pray for joy and peace Is 55:13

Thursday, June 2, 2005

Great joy!

Yesterday I had a pretty busy day. Not out of the ordinary, just busy. When I am recuperating at my grandmother's house after chemo its all about relaxing and resting...basically all about me. I have to make myself leave when I am feeling better because I could plant my permanent residence there! When I get home, there is no slow fazing-in of mommy; I am home, and things are steamrolling along like normal. My saving grace is that it is summer and Jake has decided to stay home this summer to help me instead of teaching summer school. He has been true to his word, helping in every way.

Last night, I had gotten home pretty late and Jake told me he was going to take a shower. That alone was pretty unusual for him, but I said okay and went to tuck in Katelyn. I heard the water running and running...and running. When I walked in the living room and Jake was reading the paper, I asked him if I could turn off the water until he was ready! Jake probably would not admit this, but he is pretty notorious for starting his shower in the morning and then remembering he has to do several things before getting in, all the while water is a running! So, this was not quite an unusual question for us. He said no, but led me into the bathroom where he had drawn a bubble bath for not himself, but me. It was so relaxing at the end of a long day, and just a reminder of the many blessings I have pouring out all around me!

I was reading my friend Amy’s blog about her cancer journey, amysayegh.blogspot.com, and I realized she was running around doing tons of stuff in between chemo rounds too. I think it makes me feel better to do normal mom things too. Yes, I get tired after accomplishing simple tasks I probably used to be able to do with one hand (while doing something else with the other hand!) But it still feels good to do them. Now, I am slower, but I was probably doing them too fast before anyway. Sometimes slowing down was like the long bath I had last night; it lets you remember the joy in what you do. And trust me, the normal mom things like brushing hair, reading books, coloring, listening to "ideas" and stories, all bring me great joy! (In case your kids don't do this, "ideas" are when you suggest something to do with your child, and she says with gleaming eyes "I have an even better idea!”)

Take care!