13 Feb - New Orleans Trip

We just got back from a family trip to New Orleans where we visited Sarah's brother Thomas and his wife Kerry. They took us to see six Mardi Gras parades (the more "tame" ones) and everyone had a great time! Ben and Sam caught quite a few beads, stuffed animals and other toys. In these pics you can see a staging warehouse for the floats, called a "den" - see the huge pile of bead bags? Also some pics of Ben and Sarah along the parade route.

8 Feb - Winter Campout

Ben and I went to the Indian Guides Winter camp-out this weekend. You can see a sunrise over the cabin, Ben on horseback and a group of us playing broom-ball on an ice-covered lake. We had a great time! Sam can't wait until the Fall when he'll be old enough to join the program, too.
Sarah is doing well - her blood tests continue to be very low and she's enjoying the less frequent doctor visits and more frequent gym visits. :)

King For A Day

Uncle Thomas and Aunt Kerry sent us a King Cake from New Orleans and by tradition, a little baby figure is baked in to the cake. The kids decided that whoever got the piece with the baby in it would be "king for a day." Well, Sam got the baby and we made him a crown today with the baby stuck to the front. :)
We also went sledding since the weather finally warmed up a bit (it was 22F, up from -10F in the past few days!). As you can see, Sam had a great time!

15 Jan

Last weekend was busy - on Saturday, Ben took part in a cello workshop that took up most of the day and he really enjoyed it. The boys and I had just enough time after that to get out to the sledding hill - played in the snow until after dark. :)
On Sunday, we all went to a local indoor water park and spent all day playing in the water. The whole family was exhausted after that!
Sarah is doing great - got another round of tumor markers this week and the numbers are staying low, and she's keeping up with her trips to the gym, as well.
This week, we'll just focus on staying warm since we've got wind-chills going way below zero degrees F in Chicago tomorrow and snow everywhere. Brrr!

Christmas

Santa was good to us this year -- lots of presents under the tree, although 7am felt pretty early on Christmas morning!  It was barely getting light out.  You can see Ben and Sam here checking out their stockings.  They both have their matching Christmas pajamas on, which they always look forward to getting each year on Christmas Eve.

Shortly after Christmas, we were also happy to get a visit from Elizabeth.  And then we just celebrated the New Year here in Chicago.  Best wishes for the New Year to all!

Advent

We had a really busy time leading up to Christmas!  Alan's parents were with us for the second half of Advent and celebrated Christmas with us, which was very nice.  Since they live in Texas, the snowy white xmas was a big treat this year! 

The first pic shows Sam in his pre-school holiday music show cracking-up at something.  After that you can see our little shepherds, dressed up for the children's Christmas pageant at our church.  Then there's a pic of us decorating the tree, with Oma helping out.  Finally a quick pic that hints at how hard it was to get the picture we ended up using for our photo xmas card!  (all you parents out there know exactly what I'm talking about!)  Getting both boys to smile at the same time & not make a face or poke each other is always a feat...

But, we got everything done and had a great Advent time. :)

Snow Time Like The Present

Well, we got more snow than I expected and I had to shovel. Good thing I had help! Sam and Ben love to get out there with me and clear the snow from our driveway. They get a big kick out of standing in way of the snowblower's chute as it spits out a continuous stream of snow on to them. Since it's super cold right now (7F when I got up), I think we'll have the snow around for a bit. We also got bundled up and went sledding yesterday, which the kids really enjoyed!

Thanksgiving

Elizabeth came to spend T-day with us and everyone had a great time. We had a huge and delicious meal which you can see here, and of course we have much to be thankful for!
We also got another set of tumor markers back for Sarah. The doc said they are not good, the are "very good!" They were the lowest they've ever been so far. (CA27-29 = 6.7)

20 Nov - Some Good News

Here's a new family picture that we had to take for one of Sam's pre-school projects that came out nice. Also, you can see Sam as an indian when he had a pow wow at school.

Now for the good news! Sarah just got a PET scan and the results came back showing no new metastases and notably no liver lesions. Those SIR spheres really did the trick and we're so glad we kept fighting to get the insurance approval instead of going the easier route and getting the chemo-embolization done. The scan did show numerous bone mets in her spine but those have been there since the beginning and are categorized as "sclerotic" lesions, which means they are growing slowly enough that the bone has time to regrow at the boundaries of the spots. That, together with Sarah's very low tumor markers, puts us in a pretty good place right now and Sarah is really enjoying not being on constant chemotherapy.

We also went to Houston for homecoming and Sarah's 15yr college reunion. After catching up with old friends, Sarah went up to Dallas to greet Nicole at the finish line of the 3-day Walk For Breast Cancer. Thank you so much to all who have given generously in sponsoring Nicole's walk -- she has raised almost $6,000!

Halloween

Quite a crew, huh? Halloween was fairly warm this year and everyone seemed to be trick-or-treating early, so we joined in. Ben might as well have been dressed as a pirate -- there was a lot of candy loot. I just hope we finish it (or "lose" it) before Christmas rolls in. :)

The Indian Guides Fall Campout

Ben and I went to the Indian Guides Fall campout again this year just before Halloween and it was a great trip. He loves the activities, hanging out by the camp fire and staying up late... Who wouldn't? The weather was perfect and we even had a "haunted cabin" event in the evening where the kids dress up in costume and trick-or-treat to the cabins which are decorated for Halloween.

3-Day Walk for Breast Cancer

My best friend, Nicole, is walking in the Susan G. Komen 3-Day Walk for Breast Cancer this weekend in my honor. She has been a huge moral support to me over the last two and a half years, and now she has committed herself to raise funds for a cure by walking in this event. I'm writing to ask you to consider supporting her efforts by making a donation. She has set a goal of raising $4000*, and with your help, I know she will surpass that goal!

Please visit her fundraising page:
http://www.the3day.org/goto/Nicole.Smith
to make a donation of any size to help find a cure for breast cancer!

*EDITED: She has raised her goal to $5000, and she's almost there! Thank you so much to everyone who has donated!!

Results are in ...

I got the results from my brain MRI and blood tests today. The pituitary tumor is stable, and the rest of my brain "remains unremarkable". I love that wording! My tumor markers were both normal, which means ... I get to take a break from chemo! They checked my estradiol levels (estradiol is a form of estrogen) and I am not in menopause yet, despite monthly shots to shut down my ovaries. I suspect that I will have to start taking Tamoxifen again. And I will probably have my ovaries surgically removed sometime in the near future. But right now, I'm not worried about that ... just so happy to not have to get chemo for a while. Hopefully it'll be a good, LONG while!

Time for an update!

Things have been busy around here since we got back from our vacation. Ben started 2nd grade, and Sam started his last year of preschool. The pictures above are First Day of School pictures (unfortunately I didn't get them in for haircuts before school started!). Cello lessons have started up again, and Ben already had his first concert last week. He's also taking a basketball class in preparation for playing on a basketball team next month. Sam resumed swimming lessons and started playing Pre-K soccer. He had his first game this past weekend:

Needless to say, we spend a lot of time driving to and from school and the various activities!

I had a liver MRI last Friday and got the results today. The large tumor on the left lobe of my liver is still seen on the MRI, but according to the PET it is inactive and therefore not a cause for concern. The smaller satellite tumor is no longer seen. There is a lesion on the right lobe of my liver, but the radiologist thinks it is likely a hemangioma, which is a benign tumor made of blood vessels. I will have another MRI next month to check on it, but I just checked my MRI report from March and there was a lesion that was likely a hemangioma back then. So I am fairly confident that we are looking at a benign tumor. The overall impression of this current MRI is that there is "no evidence of progressive metastatic involvement". Yay!

Tomorrow I have a brain MRI to check on the pituitary tumor. If that is stable and my tumor markers (which they drew blood for today) haven't risen, I will finally get to take a break from chemo. I should get a call from my doctor on Thursday with all of those results, so I am holding my breath until then!

Back from Vacation

As you can see in these pictures, we had a great time on our family vacation to Florida! Spent lots of time swimming and collecting sea shells. I took a picture of Sam's foot standing on the beach where there are so many shells in some spots that you can't even see sand. Also, there's a picture of the sunrise viewed from our balcony which overlooked the resort's beach and pool area.

Tropical storm Fay did make us evacuate Sanibel island on Monday night (stayed in a Ft Myers hotel on higher ground), but we were right back on the beach the next day after the storm made landfall to the South and had passed on its way up to the Florida panhandle. Overall, we had great weather except for a few rain showers and the stormy day.

Sarah is feeling fairly well -- she started another 2 week Xeloda cycle on Friday and hasn't had any significant nausea or fatigue so far. The main side effect is that the skin on her feet is continuously peeling off (like after a very bad sunburn) and it makes them tender and uncomfortable to walk on. We're in a relatively good place right now. We're continuing to monitor tumor markers and Sarah will get another set of MRIs (brain and liver) near the end of Sept. If those are clear then we hope she can take a break from chemo -- what a relief that will be after this marathon of over 1.5 yrs of nearly continuous chemo!

Although we can't ignore that progression almost certainly lies somewhere in the future, we are very thankful that Sarah's many treatments have bought us precious time - time for cancer research to continue advancing towards a cure, and time for us to spend together. As always, we are focusing on living life to its fullest today and only worrying about the future when we need to in order to make the best decisions about what to do next. Let's pray for a looooong "quiet" period for Sarah!

More good news!

Today I was in for treatment, and my oncologist handed me a copy of my blood work from last week .... My tumor markers have dropped down into the normal range!! CA 27.29, which topped out at 172.6 at the beginning of June, has dropped down to 14.9. Normal range for CA 27.29 is 0 - 38.6. Just two weeks prior, it was 53.9, so it has taken quite a nose dive! This correlates with the clean PET scan ... the numbers were just lagging behind a little. It's starting to sink in that, for the time being at least, I am NED (No Evidence of Disease). Wow!

I also tried to get a better understanding of the chemo plan from my doctor, and when I asked about taking a break to save the chemo for future use, he agreed that if the MRI next month looks good, I could take some time off of chemo and just continue on Herceptin (targeted therapy ... no side effects like chemo), Zolodex (ovarian suppression ... tolerable side effects) and Zometa (bone strengthener ... also no side effects for me). So 21 months after I got on this mets roller coaster, I might get to step off for at least a little while and take a breather. I *still* can't quite believe it!

The docs have weighed in

I talked to both my oncologist and my interventional radiologist this week about the PET scan results. The interventional radiologist called it a "complete response" to the treatment. He said the reason the report says that I had a resection is because they didn't see anything in the area where there was uptake in the last PET scan, so they assumed I must have had it cut out (they obviously didn't read the form I filled out detailing all my previous surgeries and the SIR Spheres procedure!). He wants me to have a follow-up MRI in another two months, and it sounded like after that I'd only need to see him if I needed another SIR Spheres treatment!

My oncologist called the PET results a 'pleasant surprise', but he is not planning on changing my treatment at all. I have finally recovered from the horrible Xeloda side effects, so I got to start my next round of Xeloda today. We have reduced the dose again (it's now half of the dose I started on originally) and we're hoping that I will be able to tolerate this lower dose. I was really disappointed to hear that I will continue on with chemo indefinitely, so much so that I didn't ask the right questions to understand *why* nothing will change despite a clean PET. I plan on asking the right questions on Monday so that I can understand the reasons. Perhaps then I will feel more like celebrating ...

PET results are in ....

I finally got a copy of my PET report this morning. I *think* it sounds really good, but it almost seems too good, if that makes sense, so I'm waiting to hear what the doc's interpretation is before I really celebrate.

Here's the wording:

The patient has undergone resection of the previously demonstrated lateral left hepatic lobe metastasis since the prior outside study. There is physiologic accumulation of tracer within the remaining liver tissue, with no suspicious hepatic uptake identified at present.

Tracer distribution throughout the remainder of the imaged body is also physiologic, with particular normal concentration noted within brain, myocardium, gastrointestinal tract and genitourinary tract. No areas of abnormal uptake are identified.

The lungs are clear. The heart is normal in size. The bowel is normal in caliber. There is no pleural effusion, pericardial effusion or ascites. Allowing for the lack of intravenous CT contrast, no focal visceral organ lesions are seen. There is no hydronephrosis, and no abnormal gynecologic findings are seen. .... No lymphadenopathy is identified.

IMPRESSION: Interval hepatic metastasis resection. No malignant findings at present.


There were a few other random observations in there that I took out, but that's everything relating to possible cancer.

The previous PET showed uptake in the left hepatic lobe (obviously) and also in the left supraclavicular lymph node and 2-3 lymph nodes in the right upper retroperitoneum. It also showed a solitary site of bone metastasis in the mid thoracic region.

And now, there's nothing ... hard to believe. The nurse I talked to about the report said the doctor (interventional radiologist who did the SIR-Spheres procedure) was very pleased, but that they didn't have the disc yet, so he was waiting to get the disc and look at it himself. So, I'm feeling like maybe they missed something that they'll find on a second look ... I'm just not used to getting *all* good news.

I probably won't hear from the docs until next week, so I think we'll spend the weekend feeling cautiously optimistic. Can't celebrate too much yet anyway because I'm still suffering with tummy troubles. Going in for more IV fluids today ...

PET scan done ... results tomorrow?

I got my PET scan done today. They said my doc should have the results tomorrow ... we'll see.

It's been an eventful week in cancerland. Mostly not good, unfortunately. Tomorrow morning I will attend the funeral of my friend, Candie Jaeger, who died last week at the age of 32. Candie befriended me at the doctor's office on the day I was diagnosed with liver mets. As Alan and I sat shell-shocked in the treatment room, while my first dose of chemo for mets poured into my veins, Candie introduced herself - at the time, she was a nearly 7 year survivor - and gave us a pep talk. She talked about how she had beaten liver mets and how you have to keep fighting - never give up. And that's what she did, until last week, when she finally let go on her terms. She was a real inspiration to me and many others, and I will miss her very much.

I've had my own challenges this past week. Just as I finished up my second round of Xeloda and was looking forward to spending the weekend with my friends Shelby and Nicole, I was hit hard with another fun side effect. Let's just call it "tummy trouble". Along with tummy trouble came the inevitable nausea, so I spent most of my weekend in Birmingham not eating and near a bathroom. By the time I got home on Monday, I was pretty severely dehydrated, so Alan had to take me in for some IV fluids and a couple of shots to help with the tummy trouble. I was feeling better today, although still a bit dehydrated, so I went in for another liter of fluids. This evening, however, tummy troubles have returned with a vengeance, so I guess I'll spend my third day in a row tomorrow getting IV fluids at the doctor's office. It's what I need to do to avoid being hospitalized (yikes!). I did have a nice time with Shelby and Nicole, despite all the tummy troubles.

One bit of good news amid the bad is that my tumor markers have taken a huge nose dive! CA 27.29 is down to 53.9 from a high of 172.6 six weeks prior. We are hoping that this means that the SIR Spheres are doing their job. Tomorrow, hopefully, the PET results will support this theory. Stay tuned ...

Sam's First T-Ball Game and an update

Here are some pictures from Sam's very first T-Ball game this morning. I took them with my phone, so the quality isn't great, but I am so impressed with myself that I figured out how to send them via Bluetooth from my phone to my computer ... all by myself! Sam batted twice and ran to first base (not third as he had done in practice) both times. He played third base and short stop, but he had more fun kicking the dirt than paying attention to the batters (as did most of the other kids on the field)! Ben has been playing Rookie ball (coach pitch), and he's done very well. I will take some pictures at his next game and post them soon.

I scheduled my PET scan for next Tuesday, after I get back from a second annual girls' weekend with my two best friends from high school, Nicole and Shelby. Last summer, they came up to Chicago for a weekend in the city. This summer, we are going to Shelby's neck of the woods, Birmingham. We plan to stay in a nice resort there and just hang out and visit. Our plans to venture further out to Atlanta, Chattanooga or Asheville had to be canceled due to the side effects I'm having on my current chemo. I've developed hand-foot syndrome, leaving my hands and especially my feet red, hot and painful. It often feels like I'm walking on shards of glass, so I need to stay off my feet as much as I can.

The high tumor markers aren't worrisome to my doctor yet. They're checking my tumor markers again this week, and hopefully, they'll be on their way down now that I'm back on chemo. The PET scan will also give us a look at what's going on, so next week we should have good idea of how things are going in my liver and elsewhere.

MRI Results

Good news! The pituitary tumor has decreased in size to 2mm x 5mm x 6mm. That's down from 4mm x 7mm x 9mm 3 months ago and 1.3 x 1.2 x 1.2 cm at the beginning of March. The rest of my brain is "unremarkable", which is good in MRI-speak! I haven't spoken to the neurosurgeon yet, but I suspect I'll get another MRI in 3-6 months to check on it again. Considering I wasn't on any chemo for 2 1/2 out of the last 3 months, I'm starting to think this tumor may not be a met after all. As long as it stays small, I won't have to have the surgery to find out for sure!

I also got a call from my SIR-Spheres doctor yesterday. He wants me to get the follow-up PET/CT scan at 2 months rather than 3 months. I'm not sure why he changed his mind, but I'm glad I'll get a chance to see what's going on sooner - especially with the higher tumor markers. I don't have any aches & pains (aside from chemo side effects) or other symptoms of cancer elsewhere, so I hope the PET/CT won't show that it has spread anywhere else. I'll schedule it for sometime in the next couple of weeks, so we'll know for sure pretty soon!

30 June

Here's a smiling Sam pic. He's as cute as ever... and he sure keeps us on our toes.

Sarah's not feeling too bad - the sensitivity on her hands and feet is getting a bit better. Quick update on tests: she had tumor markers measured just before starting Xeloda three weeks ago and her numbers were the highest we've seen come back on tests, but we think they could actually be down from their peak while she was off chemo and before the SIR treatment. CA-27.29 = 172 and CEA = 133. We're not sure what to make of this but these may not be bad or unexpected given how quickly the liver lesion was growing just before the procedure. Our hope is that the next round of markers will be down significantly if the liver met was the primary contributor.
Sarah also got a brain MRI today to check up on her pituitary lesion. We'll get results either tomorrow or Wed -- she hasn't had any pain or symptoms so we hope that nothing adverse shows up. But, Sarah's approach is always to be braced for any news good or bad - sort of an emotional survival tactic after past hard knocks. Ok, more to follow when we get those MRI results.

14 June Update

High time for an update! After my trip to Singapore I went on an Indian Guides camping trip with Ben and Sam to Starved Rock State Park, which is around 2hrs SW of Chicago. It is known for its hikes into canyons off of the Illinois river - you can see Ben and Sam walking in to one. Got a pic of Sarah and Elizabeth, who was up for a visit as well. The 3rd pic shows Ben and his 1st grade teacher on his last day of school. Can't believe he's already going in to 2nd grade next year! Time sure flies... Sarah's brother Thomas is also here for a visit this weekend. Sarah's birthday was this past Wednesday and she got lots of birthday well-wishes from everyone + we went out for a nice dinner to celebrate that as well as her 2-year "cancerversary" - approx. 2 yrs since her diagnosis on 11 May 06.
Sarah finally started Xeloda again last Sunday and she's feeling "ok" so far. Some nausea and fatigue, but nothing that is stopping her in her tracks. We think it may have a cumulative effect so we'll see what next week looks like. We've got two more months until we can do another PET scan to see how effective the SIR-sphere treatment was. Hard to wait... in the mean time Sarah got a tumor marker check and we're waiting to hear the results. They should be down from the last time. We're kind of in wait-and-see mode and keeping very busy as the school year ends.

So, although I was cleared to start chemo again on Monday, my insurance company had other plans. I was unable to get my prescription for the Xeloda pills filled at my local Walgreens. I'm required to have it filled by the specialty mail-order pharmacy. My request for an override so that I could get the first 30 day supply at my Walgreens and get started right away ... was denied. They assured me that they would put a rush on my order, but first they had to verify my benefits and co-pays ($0 at this point since we long ago met our deductible and out of pocket maximum). I finally got a call from them at 6pm tonight, at which point they sent a fax to my doctor for a prescription. So, of course they won't get that until tomorrow, and I won't get my pills until Friday (at the earliest), which means I won't start my chemo until Saturday morning. Some rush!

In other exciting news, some people moved in across the street from us with *five* pit bulls. Earlier tonight one of them got out and was following a guy down the street, barking and growling at him in a very menacing way. This happened right in front of our house, just one hour after Ben and Sam had been riding their bikes up and down our driveway. The owner did come and get his dog, but I called 911 anyway. A squad car came out and the officer went in and talked to the owner(s), but I don't know what was said. Our village doesn't have anything in the municipal code about pit bulls, so I'm told there is nothing they can do until something happens. I am sick to my stomach at the thought that *something* could happen to my kids or my neighbors' kids. I don't think I'll be sleeping much tonight ...

Quick Update

I had my 2 weeks post-treatment blood draw on Wednesday, and my liver function tests came back normal! So I am cleared to start chemo again on Monday. This new chemo will be an oral chemo called Xeloda. I'll have to take 6 pills a day (3 in the morning and 3 in the afternoon), and I will be on a two weeks on, one week off schedule. Side effects are hand/foot syndrome and stomach issues, but we will reduce the dose if I have any problems. I will still go in every three weeks for my Herceptin infusion and every four weeks for the Zometa infusion (bone strengthener) and Zolodex implant (ovarian suppression). I've heard of many people who have had success with Xeloda, and my doctor is very optimistic that the SIR Spheres will effectively reduce the size of the liver mets. So we are hopeful that the August PET scan will bring us good news. At the end of June, I will get another brain MRI, which I hope will show a stable pituitary tumor. I haven't had any headaches or vision problems, and with all the hoopla surrounding the SIR Spheres treatment and insurance issues, I had almost forgotten about it!

Alan leaves in the morning for a week-long trip to Singapore and Kuala Lumpur, Malaysia. I'm sure he'll have some pictures to post when he gets back. For now, I'll post a couple of pictures of the four of us at the Memorial Day parade on Monday (you can see my hair has finally filled in, though it is grayer than before!):

15 May - Back from SIR sphere treatment

Everything went great yesterday with Sarah's SIR sphere treatment. We got to the University of Illinois at Chicago hospital at 6am and Sarah was done and back in the recovery room by 11am. She had pretty bad nausea afterwards but that is likely due to the anesthesia - the nausea has mostly subsided now that she's back home. There doesn't seem to be any lasting pain at this point -- just some pain when they initially delivered the treatment to her liver. We ended up leaving the hospital at around 9pm. While we were out, Sam made Sarah a little wood sign which you can see in the pic above -- "I love my Mom." It was very sweet!
Sarah is taking it easy today to make sure her stomach gets back to normal, plus she needs to go easy on her right leg where the incision for the angio catheter is. Otherwise, she's doing well. Now we need to pray that the treatment is effective. She'll get a blood test in 2 weeks to verify her liver is functioning fine and then we hope to get her back on Herceptin and chemo so the rest of her body is "covered." We have to wait 3 months to do a follow-up PET scan on her liver to see how effective this SIR sphere treatment was in killing off her large liver tumor (they said it was pretty much taking up all of her liver's left lobe now) - the doc said doing a test earlier could be inconclusive.

9 May Update - SIR next Wednesday

Sarah and I celebrated our 13 yr anniversary on 6 May! We had a nice romantic dinner at a great local French restaurant and this is a picture of one of our dessert plates. The waiter had written "Happy Anniversary" in chocolate on the plate!

It was also a great anniversary gift that Sarah was approved for the SIR sphere treatment. We went in yesterday to have her prelim. angiogram, CAT scan and test run completed. Everything went fine and we were on our way back home by 3pm. The actual SIR sphere treatment will be done next Wednesday. The doctor told us that Sarah could have some pain and nausea after the treatment since her tumor now takes up a fairly large part of the left lobe of her liver, but there's is still a good chance that she will be able to come home on the same day of the treatment. We're not going to push it -- will have to see how it goes.

We are both so relieved to finally be moving forward again and getting back in the fight. It was a frustrating and helpless feeling to be in a forced chemo treatment break as we waited for this SIR treatment to be approved. The goal is to get this done and quickly get back on chemo and Herceptin (have to take a 2 week Herceptin break as well after SIR treatment).

Finally approved - getting started tomorrow!

Alan talked to his contact at the insurance company late yesterday and was told that I had been approved for the SIR Spheres procedure! We need to have this in writing, though, before we can get started with anything, and we waited ALL DAY today to get the letter in hand. I had talked to the nurse coordinator at the hospital earlier in the day, and she said that I could come in tomorrow for the angiogram if we faxed her a copy of the letter before she went home at 4pm. The letter, of course, didn't come through until after 5pm. So I called and left her a voice mail, figuring we'd have to put it off another day. She called me back at 9:30 tonight, and we are on for tomorrow! I have to be there at 6am to check in. They will do some blood work and a CT scan before the angiogram, which will take 2 1/2 to 3 hrs. I should be home sometime in the afternoon or evening tomorrow. Wow, after all the waiting, things are moving fast! Assuming all goes well with the angiogram tomorrow, I should be able to get the SIR Spheres next week. I am so glad to finally get started, and I'm very thankful that my in-laws stuck it out with us so that we can get started on such short notice. After a thoroughly frustrating day (including me hitting a pothole and needing to get new tires for the van), I can breathe a big sigh of relief. Whew!

And we wait ...

We submitted the appeal to our insurance company last Wednesday afternoon. Despite the fact that their procedure for appeal states that they will make a decision within 72 hours of receiving a request, we *still* have not received an answer. When Alan called on Friday to speak to someone about the case, the appeal had just been scanned in and entered into their system, and the person he spoke to seemed to have no knowledge of the 72 hour turnaround time! We think it may have gone before the medical appeals board yesterday, so maybe we'll hear something today or tomorrow. It's so incredibly frustrating! My in-laws arrived three weeks ago to help out, and I still don't know if or when this treatment will happen. If it gets denied again, we have the option to file a second level appeal. I hope it doesn't come to that because who knows how long that will take!

On a brighter note, today is our 13th anniversary! It's hard to believe it's been 13 years since we got married and almost 18 years since we started dating - that's nearly half of my life! We have experienced so much and made a lot of memories over those 18 years. Tonight we plan to celebrate quietly at a nice French restaurant and look forward to our 14th year together. Happy Anniversary to us!

Well, we got an answer ...

Not the one we wanted, though. I got a letter in the mail today with a denial for the SIR Sphere procedure with the reason given that the procedure is "unproven". So now we have to submit an appeal, and once we submit the paperwork for the appeal, they have 72 hrs. to answer. So tonight we are putting together a comprehensive history of all treatments and scans related to the liver tumor(s) to support our request for treatment. Seems like the doctors would have done that already, but if you want something done right, you have to do it yourself. We hope that the appeal will be submitted tomorrow so that we'll have an answer by Friday. I think I will go crazy if I have to wait over another weekend to hear if I can get this treatment! It's been seven weeks since my last chemo (I was due for my next treatment four weeks ago), so I don't feel like I can wait around too much longer. We may have to give up on this and just get the chemoembolization so that I can get started on systemic treatment again. It's just so frustrating that some nameless person at an insurance company, who has never seen me, gets to decide whether I can try this treatment that three of my doctors are recommending as the best course for me to take!

Aaarrgh ...

We didn't get an answer today, so now we have to wait until Monday, at the earliest, to find out if I am approved for the SIR Spheres treatment. We've been assured that things are moving very quickly (as far as these things go), but it sure doesn't feel like it! It's hard being in limbo ... if I had done the chemoembolization, I'd likely have recovered from it by now. I really hope that I'm able to do this treatment, and that it's worth it after all this waiting!!

Still waiting ....

We thought we might get an answer from the insurance people today, but we didn't. We heard from the person who is handling it that they were asking questions and going back to consider it, which is good news. They didn't automatically deny it, so she thinks we may get an approval tomorrow. It sounds like UIC would get me in for the angiogram right away once we get insurance approval, so we are hopeful that we could get the ball rolling early next week.

I've been off of chemo for almost four weeks now, and while I am enjoying a "chemo break", I'm worried the cancer is too. I got a copy of the final PET scan report, and there were 2-3 abdominal lymph nodes that also showed up on the PET. Systemic chemo is the way to treat them, and I can't start that again until a few weeks after the SIR Spheres procedure. Hopefully the Herceptin is keeping them under control for now.

My hair is starting to grow back now that I'm off the Taxol/Carbo. I have tiny little stubby eyelashes and patchy hair on my head. My eyebrows are still MIA, and until the hair on my head fills in, I'm still wearing hats, but I'm making progress!

Fingers crossed ... I'll have good news to report tomorrow!

The Latest Plan (subject to change ... )

We went down to UIC and met with the interventional radiologist there to find out about and be evaluated for treatment with SIR-Spheres. The treatment is similar to the chemoembolization in that it involves threading a catheter in through the femoral artery up to my liver, but instead of injecting chemo directly into the tumor, tiny resin microspheres (8 times the size of a red blood cell) infused with Yttrium-90 would be injected. They would lodge themselves in the capillaries inside the tumor, blocking off blood flow and access to oxygen and nutrients, and they give off radiation for about two weeks, killing the tumor from the inside. The doctor said that the side effects are less than the chemoembolization and that he has seen better results with this procedure. We were convinced that this would be the best option to try and are excited to get started, but first it has to be approved by our insurance. This could be a problem because the procedure is FDA approved for primary liver cancer and metastatic colorectal cancer only. It could take about a week to hear whether it is approved by our insurance. After it is approved (I'm being optimistic and assuming it will be!), I will have to have an angiogram first to map out the blood vessels in the liver and have a "test run" with a protein of a similar size to the microspheres to be sure that they will go where we want them to go and not anywhere else! Then a week later, I will have the procedure with the SIR-Spheres.

So now we are waiting as patiently as possible to hear back from our insurance. I'm still a little concerned about side effects (doctors always seem to minimize side effects ... I think so as not to put the idea into your head and have it be self-fulfilling), but I'm willing to suffer through some pain and nausea for something that holds some promise of reducing the size of this tumor. They said that if the tumor shrinks enough, we could then zap it with radio-frequency ablation, which *could* then get rid of the cancer in my liver. Wow!

16 April - Latest Plans

Well... we had set up the chemoembolization procedure for today, but the plan changed yesterday afternoon! The interventional radiologist that was going to do the chemoemb. talked to a fellow doctor from University of Illinois and ended up recommending that we first consider an alternate form of this treatment which uses radioactive beads instead of chemo. So, instead of doing the chemoemb. today Sarah and I will go discuss the radio-bead embolization with the doctor at U of I and we'll shoot to schedule either that one or the chemoemb. early next week.

PET results and New Treatment Plan

We went in on Monday for the results of the PET scan. I think we were both nervous because there was the possibility that the PET could show that I had mets that we didn't know about, for instance in my lungs. Usually I think it's better to know than not know, but it would have been quite a blow to find out that the disease is more extensive than we thought. Fortunately, the PET did not show anything in my lungs. It did show the one large tumor in my liver, the spots on my spine and one lymph node just above my collarbone. The lymph node is "new" (maybe not new, but it's the first time we've seen it), but it looks small on the scan and my doctor could not feel it when he examined me. So for now, we're not going to worry too much about it. We need to work on this big tumor in my liver.

My doctor recommended a procedure called chemoembolization. It is performed by an interventional radiologist, who threads a catheter up the femoral artery from the groin to the liver, then into the arteries feeding the tumor. Once he determines the catheter is positioned correctly, he'll inject three different chemo drugs mixed with an oil directly into the tumor. This mixture will essentially soak the tumor in a high concentration of chemo, while sparing the rest of the body from the effects of the chemo. Hopefully, this will at least "stun" the tumor and stop it from growing. It could also shrink the tumor, though they are careful to say that they don't expect to eradicate the whole tumor. Just getting it to stop growing would be considered a success.

We met with the interventional radiologist today, and after he explained the procedure to us and answered all of our questions, we scheduled it for next Wednesday. I will stay in the hospital overnight Wednesday night and hopefully come home on Thursday. Alan's parents are coming up on Tuesday to help us out while I'm in the hospital and recovering. I can expect to feel "under the weather" for 2-7 days after the procedure. I have read about side effects including pain, nausea, vomiting and fever, but the doctor didn't think I would have too much trouble with it (they are always so optimistic about side effects!).

One good thing about this procedure is that it can be repeated over and over again, as long as the artery feeding the tumor stays open. So if it is successful and shrinks the tumor, we could repeat it again in a few months and try to shrink it more. For now, though, the plan is to start a new chemo in a few weeks after I've recovered. The new chemo is an oral chemo called Xeloda. I'll have to take several pills every day, but I won't have to sit for hours getting an infusion. I have read of many people having success with Xeloda, so I'm hopeful the chemoembolization and Xeloda will work well for me.

Although I am a little worried about the possibility of pain and nausea from the chemoembolization, I am eager to get moving on a new treatment that could stop the growth of this stubborn liver tumor. And I'll take this over brain surgery any day!

Scan results are in ... good news and bad news

We went in today to get the results of the two scans I had on Friday. The results were mixed. First, the good news ... the pituitary tumor has markedly decreased in size in the 3 1/2 weeks since the last scan. It has shrunk from 1.3 x 1.2 x 1.2 cm down to .7 x .9 x .4 cm! This means that I won't be having surgery on my pituitary, at least not right now. I had resigned myself to the idea that surgery was my best option for treating the tumor, but it appears that surgery is no longer necessary at this time. We will continue to monitor the tumor with MRI and if it should start to grow again, the surgery option will be revisited. I am relieved to be able to put it off for now, though!

Now, the bad news ... the liver tumor has grown significantly over the last three months, and a new 1.8 cm tumor has appeared as well. The large tumor has grown from 4.1 x 4.4 cm to 4.8 x 6.9 cm. Yikes, it is getting big! Too big, according to my oncologist, for radiofrequency ablation and for surgical resection. There was some good news in the report, however. They are now saying that one subcentimeter tumor appears to be a hemangioma (a benign tumor) and that the several small lesions now appear to be cysts. That means that of the two dozen lesions that were on my liver when the mets were diagnosed in Dec. 2006, only two are now considered metastatic tumors.

My oncologist said that while the tumor is large, it is only taking up 5-10% of my liver. The liver doesn't start to lose it's ability to function until 70% is overtaken by tumor, so I am still a long way off from that. My liver function tests all continue to be normal, and I am feeling fine. On Friday, I will have my first whole body PET scan, which uses radioactive glucose to pinpoint the cancer throughout the body. Cancer cells eat up glucose much more rapidly than normal cells, and the PET scanner measures the "uptake" of the radioactive glucose and highlights the hot spots, presumably the areas where there is cancer. My doctor thinks there is a chance the large tumor on my liver could be partly necrotic (dead tissue), and the PET scan can show how active the tumor is. We will meet with my oncologist on Monday to go over the results of the PET scan.

Alan and I were talking today about how, a year ago, news of a 7 cm tumor on my liver would have really freaked us out! But, while I am not happy to hear that the chemo is not working on this tumor, I am really not too worried about it at this point. There are still several options available to treat it, and like I said above, my liver is functioning normally and I'm feeling fine. It's funny how much my (our) perspective has changed over the last year. I used to be such a pessimist, but now I try to look for the positive side to things and count my blessings where I can find them. Life is much less stressful this way :)

Kid Pics and Sarah Update - 28 March

Sam and Elizabeth during our visit to the New Orleans wildlife preserve. We got to see & feed giraffes, antelope, camels and long-horn cows.
Mmmm... chocolate Easter bunny is the best!
Sam looks very happy about this birthday gift! I can almost hear him say "cool!"
Ben's first cello recital! He played Twinkle Twinkle Little Star with his first-year group.

Just before our New Orleans trip, we talked to quite a few doctors to discuss Sarah's pituitary growth: her neurosurgeon & radio-onc at Univ. of Chicago, her oncologist and a radio-onc doctor at Northwest Community hospital where she received radiation treatment. After learning that all of them recommended conventional surgery vs. stereotactic radio-surgery (when it is required due to continued growth or symptoms), Sarah has come around to this point of view now.

The plan is to get another brain MRI and also a liver MRI to see how the Taxol-Carboplatin is working and then go from there. She gets the MRIs tomorrow (Friday) and we should have results on Monday when she goes in for Taxol-Carbo treatment #5. If her liver tumor is larger (no please no), we may very well end up switching her to a different chemo -- so, Monday is a bit of an unknown. If her pituitary growth has growth some more, then she may also end up getting the pituitary surgery as soon as we can schedule it. Otherwise, she'll likely wait until there is either significant growth or there are further symptoms (not all the docs agree that her headache two weeks ago was caused by the pituitary growth) . We don't know what else could have caused it, but it has not come back even after coming off the Decadron. It is still possible that the growth is a benign "adenoma" - in that case the surgery could be all that is needed to reduce the growth's size with no follow-on treatment required except potentially hormone replacement drugs (if any pituitary function is lost)

We're hoping that Taxol-Carbo has done some good for her liver mets. That will be answered Monday, and we know that these things are very unpredictable, so we aren't going in with any expectations one way or the other.

Ski Trip and Update

We went on a ski trip with friends this weekend (to Wisconsin) and had a blast! Sarah and I hadn't been skiing for eight years and of course it was the first time for the boys. They learned quickly and Ben even went down some black slopes -- although that really scared us since he just went as fast as he could, without turning until the bottom. Sam liked skiing so much that he was inconsolable when I told him it was time to go home. :) But, we are all exhausted and I'm sure our muscles will be sore for days...
Sarah gets Taxol-Carbo treatment #4 tomorrow. It's been a tough week in Cancerland: Sarah developed a headache last Tuesday that pretty much stopped her in her tracks. At first we were worried that she had a brain hemorrhage since we'd been warned about it (related to the pituitary met) so she went in to get it checked. A rapid CT showed it wasn't a hemorrhage but she also got results from a more detailed brain MRI which was done last Monday and it showed that the pituitary met had grown slightly (not good - we were hoping to see size reduction due to the chemo). Since there is not much room near the pituitary gland, the docs believe that this small size increase is probably causing the headaches. She's now taking the steroid Decadron to control any swelling/inflammation and it made the headaches go away for now, but we've got to decide what to do about the pituitary met now. Options are radiation surgery or conventional surgery. We'll be talking to the neurosurgeon at University of Chicago cancer center over the next week to discuss it.
It feels like we're back in limbo again, unfortunately a familiar feeling now: we hope that Taxol-Carbo is pushing back Sarah's cancer, but all we know today is that her tumor markers are not down yet and her brain met didn't get smaller. We won't really know how effective this stuff is until we get a liver MRI done which is planned for around 2.5 weeks from now. That's a long wait, but these days Sarah and I both try to avoid worrying too much until we actually have test results or other new information.