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I'm feeling quite well, both physically and emotionally. The chemo is pretty easy to take: the side effects are minimal and the infusion time is much shorter than before. I'm only at the clinic for 1-2 hours (based on how long the queue is of other patients receiving treatment that day). And the loving care and support I receive each time makes the process enjoyable. Not too many places you can walk into these days where people call out your name when they see you! (I feel a bit like Norm at "Cheers"...) It really becomes like a family: we have cried and laughed and told jokes and puns, prayed together quietly and out loud, thrown food, held discussions on everything from Hollywood to politics to faith, and cheered and clapped for the accomplishments and news of others. Ya really oughta join us, sometime! (Although I hope you never have to. :-)
Emotionally, I find ways to rejoice every day. It's easy, actually: just pick up the paper or turn on the news and you can find other folks in situations you can be grateful you’re not experiencing. On a more intimate level, so many of you have sent cards and email, popped by for a visit and called that I'm feeling supported and loved on a daily (sometimes hourly) basis. And, in turn, I have a collection of cards and photos that I see and pray for often, in return. A pretty cool arrangement, if you ask me. Throughout this journey, I credit God for minimizing my pain and maximizing my pleasure! What's not to like? —J
This weekend was the American Cancer Society 24-hour "Relay For Life,” held at various tracks around the southland (and across the nation, I believe). Saturday morning, Steve and I went to the opening ceremony and walked the "Survivors' Lap" together. Well, actually, the survivors went one way on the track and the caregivers went the other way, and we met up on the opposite side of the track where the survivor was to give their caregiver a yellow ribbon sash (kinda like Miss America wears). I wrote on Steve's "28 years and counting," because Saturday was our wedding anniversary! Then, we continued the lap together to the finish line. It was more emotional than we thought it would be, so both of us were "leaking" like crazy! But it was very special and something we'll always remember.
That evening, Holly went up to the track to walk from 6 - 7 p.m. with her ASB buddies from Rancho Cucamonga High. Then, Wendy and I took our turn from 2 - 4 a.m. Sunday morning. It had been a beastly hot day, so we were very glad for the coolness. And although you think it would have been very quiet, it was (as Wendy so aptly put it) like the biggest slumber party you could imagine, with teens running around and having a ball in the middle of the night under the bright lights of the stadium, both on the field and on the track. Their parents/guardians were trying to get some sleep in tents and campers, and some groups were quietly watching movies or playing games, but overall, it certainly wasn't a sober crowd (meaning serious, not drunk). But despite the high jinks of some of the participants, Wendy and I managed to walk about 5 miles that night (well, SHE did; I had to take one lap off for a potty break and another for my sore feet...). And we had some time to talk about life and love and faith; ya know, the kind of conversations you have at 2 - 4 a.m.!! I was very, very proud of her for her compassion for me and her commitment to see her promise (and her wobbly mother) through. After trying to pick up an early breakfast when it was over (McDonald’s doesn’t serve bagel sandwiches, any more!), we headed home for some much-deserved snooze time.
All-in-all, our family hopes we can be part of this again next year. And thanks to some of you, we helped raise about $150 for the cause! —J
Julie went into the weekend feeling pretty good. A few chemo effects started showing up on Saturday. Her legs felt a bit rubbery and she was a little unsteady on her feet at times. We had dinner with friends on Saturday (great fun!), but she was pretty worn out by the end of the evening. On Sunday morning, the symptoms were more pronounced. She took about three mini-naps during the course of the day as her energy level hit some low ebbs.
There were also some emotional ups and downs for all of us as we had some long and difficult conversations about some family issues that just seem to be magnified by what's going on. —S
Julie got her infusion of Navelbine last Thursday. We expected side effects to kick in after a couple of days, but they never showed up. She went through the weekend feeling strong and energetic, which made for a fun Mother's Day. Aside from the fact that her hair is a bit thin, you'd never know anything was wrong. —S
We got the CT scan results today and the news wasn’t as good as we hoped. While Julie’s original liver tumor shrank slightly (from 4.7 to 4.5 cm), two new tumors in the liver have grown while she’s been on her current course of chemo. Because the disease has progressed, she can no longer receive the clinical trial drug.
The doctor gave us a list of five or six remaining drugs available for treatment of metastatic breast cancer. She said that none of them is necessarily any more effective than the others, and each one has only a 5%-10% chance of slowing the progression of the disease.
Based on her recommendation, we have decided to try Navelbine. We submitted the insurance authorization today in the hope that treatment can begin on Thursday. It’ll be another 8 weeks before we test again to see if the drug is doing any good.
If Navelbine fails to work, the list of options gets shorter. The obvious next step is to work our way through the remaining available drugs. However, the doctor began talking to us today about the eventual option of discontinuing treatment altogether. Neither of us is ready to go there yet.
I asked the doctor how long it will take for the liver disease to become serious if the tumors do not respond to treatment. She foresees a timeline of 3-6 months.
Julie is doing very well as she processes all of this. She has been much better at maintaining a positive, hopeful attitude than I have. I was about to say “I don’t know how she does it,” but the truth is, I do. She has an unmistakable gift of faith. She is trusting God for whatever lies ahead.
I know I don’t have to ask, but please continue to pray. God told the Apostle Paul that His power is made perfect in our weakness. We’re trusting in that promise. —S
The last week has been refreshing. Julie has been feeling quite good; only a few nagging chemo effects linger. The most prominent is an occasional lack of energy. There are also some aches and pains. She has feeling some uncomfortable twinges in her liver as well. We mentioned that to the doctor who told us that there is some anecdotal evidence that pain in the tumor area is an indication that the chemo is working. We'll see.
Julie had her CT Scan last week. We'll get the results on Tuesday morning, just before she receives her next chemo treatment. Pray with us that the tumor is shrinking! —S
We got up on time this morning (amazing!), planning to head to church. Even though Julie has been uncomfortable these past few days, she thought she'd be up to it. Unfortunately, during the days after chemo, her body behaves like a burned-out cell phone battery. You can leave it on the charger all night, and it'll start out the day appearing fully charged. Then it goes from four bars to no bars in a matter of minutes. During breakfast, her food seemed tasteless and her energy level crashed. She felt sore, achy and listless. (I felt thankful that we had turned down a request to help lead worship this morning.) So we decided to have our own worship service at home. We sang some great worship songs, and heard a great lesson on prayer. Afterwards, we spent some time putting the lesson into practice. A very sweet time with the Lord! When we were done, Julie felt good enough for a short walk. It helped loosen her up. She came back winded, though, and curled up for a nap. Later in the evening, she had the energy to attend a dinner gathering with some great friends. We got home just in time for the battery to wear down. Lights out on a good day. It looks like the worst is over for this round. —S
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Julie got her chemo last Tuesday as scheduled. Her white count bounced up well within the normal range. The Neupogen sure did the trick. Julie went back on Wednesday and got her Neulasta shot. By Thursday, the side effects began to kick in. (emphasis on the "kick"). Her muscles were achy, her lungs felt compressed and she had the energy of a wet noodle. Today, which typically would be her worst day, she spent time preparing the house for Holly's birthday party. When I got home, she was just finishing a batch of cupcakes (see photo). While about 15 hyperactive teenagers fill our living room, Julie and I are sequestered in our bedroom. I've been running the electric massager over her legs, and it seems to help for a few minutes. My wife is an amazing, caring, incredible lady. Her positive spirit is undaunted even when her energy is spent. —S
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Julie is a champ. She spent last night celebrating the success of her first self-administered injection. She remarked about how easy and painless it turned out to be while Wendy, Holly and I winced at the mere thought of sticking a needle into our own stomachs. She woke up this morning with the achiness that so often comes along with such drugs. An interesting side note: as I was looking through the info on Neupogen, I noticed that it is made from E-coli bacteria. Oh well, penicillin came from bread mold, right? —S
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Goodbye hair. The new chemo has lived up to its advertising. Julie is beginning to lose her hair again. Lucky thing she's so cute as a bald person. It'll probably take a week or two until it's all gone. But, not liking the Gollum look, she'll probably shave it off when it gets to the straggly stage.
Next Tuesday is chemo... or at least it is supposed to be. They can't give the treatment when her white count is so low. But she can't get Neulasta (which boosts the white count) unless she gets the treatment. Can you say "catch-22"? So, she has to give herself daily injections of Neupogen to boost the count in advance of her blood test on Monday. Pray that she hits the threshhold! —S
Results from Julie's weekly blood tests came back today. Her white blood cell count has fallen dramatically as a result of the chemo. (Low white counts leave her open to potential infections.) She's taking her temperature twice each day looking out for signs of fever. She's also taking precautions to keep hands clean and stay away from sick people. Starting with her next chemo treatment and with each treatment following, she'll be taking a shot of Neulasta. (See my note from 3/25.) This drug really works, but it leaves Julie feeling like somebody beat her with a stick. —S
Julie's aches are settling down today, so it seems like this wave of side effects is settling down... at least for now. Praise God for His tender care, and thank you for your prayers. —S
On Saturday morning, it looked like the aches were starting to subside, but they came back this morning. Julie felt pretty sore and had a hard time getting warm. Still, she shook it off and (with a little help from a couple of Tylenol) made it to Easter service and then a fun afternoon gathering eith extended family. We're waiting for her to make it past the post-chemo hump. Hopefully, tonight will provide some rest and relief. —S
Last night was a bit restless for Julie. The body aches have begun. She describes it as about half the intensity of the discomfort caused by a drug she took during her last chemo called Neulasta, which left her feeling like someone sneaked in during the night and beat her with a stick. (BTW, the purpose of Neulasta was to jump-start the bone marrow into producing white blood cells which are destroyed by chemo. If her white count falls this time around, she may find herself getting Neulasta again.)
Her spirits are great, and she's reluctant to take Tylenol or Advil because she wants to guage what the chemo is actually doing. —S
The first infusion of BMS-247550 went well. The process took nearly 5 1/2 hours. It takes three hours for the study drug to be infused, even with Julie's catheter. The rest of the time includes the preliminary drugs she is given to inhibit allergic reactions and prevent some of the side effects. Some of these can be taken orally, so next time she won't have to sit there quite as long.
Julie is feeling really well so far, and is keeping up with her daily routine... which would wear out just about any normal mortal! The only perceivable side effect so far is that she has a bright red flush to her skin. —S
Julie had her Groshong Venous Catheter put in today. We got to the hospital at 7:30 this morning, and we were home by noon. Even though the procedure was done under local anesthetic, Julie fell asleep. After we got home, she napped for a few hours in the afternoon. She woke up refreshed and told me that she’s feeling a lot less discomfort than she had with her last catheter. She gets the weekend to rest before beginning chemo on Tuesday. —S
The tumor actually doubled in size since the last test in January (from about 1” to 2”). That means we’ve pretty much reached the end of conventional treatments available. (There are a few other drugs that can be tried, but they’re in the same class to which Julie has already demonstrated resistance, and Dr. Bosserman doesn’t think there’s any more than a 5% chance that any of them will have an effect.)
The new chemo Julie mentioned is a clinical trial of a drug being considered for approval by the FDA. It doesn’t even really have a name at this point—just a number: BMS-247550. It is made by Bristol-Meyers Squibb. It is designed specifically for people whose cancers have proven resistant to drugs in the taxane family (which Julie has already taken). It works by blocking cell division and causing cancer cell death. To read the entire info sheet they gave us in order to sign on for this study, click here.
Starting March 22, Julie will receive a three-hour infusion of the drug, followed by 20 days of rest. Each of these 21-day periods is called a “treatment cycle.” After her third cycle (in early May), she’ll have another set of CT scans to see how the liver tumor is responding and to check for other possible tumor sites.
The list of possible side effects covers 1½ typewritten pages, along with a disclaimer that reads “since BMS-247550 is investigational, there may be side effects that are not yet known that may occur.” So, we’re just proceeding by faith and we’ll deal with anything that happens when it happens. —S
My liver tumor has grown so, unfortunately, the current chemo isn’t working as they’d hoped. So, I begin a new chemo in a couple of weeks, this time by infusion every 3 weeks, so I’m going in next week to have my chest catheter put back in. It sure makes the meds process a lot faster and easier! And we’ll do testing again a couple of months after that to see how it’s impacting the tumor. On the good side, all my other organs are still clear and my blood counts are excellent. I am encouraged that we can move ahead to something else so quickly. I’m in good medical hands…and, of course, the perfect plan of God! —J
Next Tuesday, I'll get the results of my latest tests to see if the oral chemo I'm taking is affecting my liver tumor. I'm feeling extremely well, but a bit tired in the afternoons and evenings sometimes. And the only other side effect I'm really experiencing is my hand-and-foot syndrome in which my fingers and palms and soles of the feet sometimes swell, turn red and peel. It's not pretty -- unless you like the color red -- but if that's as bad as it gets, bring it on!! I've finished my third two-week round of chemo and will begin the fourth next week, depending on the results. If it's making a positive difference, we'll probably continue these meds; if not, we'll try something else after I finish this next round. —J
Dr. Bosserman really is amazing. You can find out more about her by visiting www.womgi.com. She’s connected with just about every innovation in cancer treatment and is networked with UCLA Medical Center, City of Hope, Loma Linda and so on. Several friends have mentioned drugs and other therapies for us to investigate. I appreciate that Dr. Bosserman will sit with us patiently as I ask her about every one. But what really impresses me is how often she says, “Oh yes, I’m on the clinical trial board for that one.” Or “we use that all the time, but it isn’t right for this kind of cancer.” Her responses make it clear that she’s way ahead of us at all times, which gives us great confidence. After all, wouldn’t you be a little worried if your cancer doctor said, “Great suggestion! That one never occurred to me, but if you think we ought to give it a try, what the heck!” —S
We did a battery of tests at the beginning of December to see how I was doing post-treatments. A few days before Christmas we met with the doctor to hear a bunch of good news: my bone scan is clear, my lungs are clear and my blood counts continue to be excellent. But she also wanted to do a biopsy of my liver to see if the tumor which had sprung up there was malignant. We did that test at the hospital a couple days before New Year's Day.
The first week of January we got the confirmation that the cancer has metastasized in my liver. But it’s metastasized breast cancer, not liver cancer. I guess there’s a big diff in treatment and outlook. We've also done an MRI to see if the brain is involved (no results yet). But in setting that up, our doctor said, “We’re hoping to find there’s no activity in the brain…” Because she was typing in her notes on the computer at the time, I don’t think she realized what she had said but when we got outside, Steve and I had a good laugh over that.
My current treatment is taking Xeloda tablets twice a day. Even though the published side effects of this chemo are very similar to what I had by infusion, I really haven’t battled with them as of yet…except for nausea, which is something I hadn’t really experienced before. The nausea hasn’t been debilitating at all, it just slows me down a bit and makes me uncomfortable (no vomiting). Even though it’s kind of been a constant thing for the past week, the last couple of days I’m doing better, probably because I’m adapting to it and trying some new tactics in food and pill-taking timing. I’m feeling quite encouraged.
We’ve had time to adjust to this new development, mentally, too. We’ve all cried together and prayed a lot…and as before, we’re heavily into praise and humor. The girls are back into the school routine and doing quite well, and Steve and I are reshaping after the “sledgehammer” blow. We’ve got a supportive and loving circle of friends and family that are committed to walking through this with us, however long it takes. We are sooo blessed!!
So, life isn’t necessarily easy…but life is good. Because our God is good. And because there’s everything to look forward to! —J