Aug. 17: I don’t feel this way very often, but I must say that for the most part, today pretty much sucked. A major exception was waking up and having Andrew tell me, “I missed you last night, Mommy. I really missed you.”
Maretta came over early this morning to tell me that when Mom met with her doctor yesterday, he gave her a referral to hospice. This wasn’t totally shocking to me, but it was certainly hard news to swallow. She also told me that Duncan, the family dog, was in a lot of pain and had yipped through the night and probably needed to be put down this morning. So we cried together for a while.
Andrew saw the tears on my cheeks and said, “Mommy is sad.” Then he tried to wipe them away. What a wonderful boy.
So I took Andrew to Karen’s for the day (I’m normally at home with him on Fridays). I made an appointment with the vet to have him put to sleep, and I headed over to Mom and Dad’s house.
After spending a little while up in Mom’s room, I came back downstairs to find that Duncan had died on his own, at the foot of the stairs, in the home he loves. Duncan was Joe and Mom’s dog, and poor Joe…this is really too much for a person to have to deal with. We all cried over Duncan for quite a while, and Joe and Dad and Maretta went out back to dig him a grave. Joe’s girlfriend Becky came over and helped me in the house. It was just a sad, sad day.
Duncan had been unable to walk up the stairs for the last few days, and we knew he wasn’t doing well, but it wasn’t clear that he was dying until last night. With Mom’s health failing so much recently, it’s really hard to be dealing with the death of our family pooch. I kept having the title of one of my books, Animals as Teachers and Healers running through my mind. And I found myself wondering if Duncan isn’t helping us somehow. Teaching us, giving us an outlet and an opportunity to experience feelings about life ending. He was a good dog. And he made our family’s life richer and fuller because he was a part of us. Some pictures of Duncan over the last 12 years are in the gallery.
Mom’s suspected Sister Joseph’s Nodule is not Cancer
August 11: I got a welcome phone call from my mom last night. The radiologist was finally able to compare four of Mom’s cat scans from over the last year, and they determined that the area that was suspected as a Sister Joseph’s Nodule has not changed or grown at all. That lead them to decide that it is not cancerous. What happy news!
After waiting for the last couple weeks to find out if Mom should have a biopsy of this nodule (which was just under the skin above her belly button), I’m relieved to have the doctor’s opinion. Apparently, Mom’s cat scans got sent to someone who was on vacation and then got stuck in transit, so that’s why it took so long for them to review them.
A radiologist reviewed them last night, and Mom’s oncologist called her at 8 pm to give her the results. This doesn’t mean that the clot in Mom’s portal vein isn’t cancerous, but it is a good sign. Here’s one thing I read about Sister Joseph’s Nodules:
Umbilical metastasis is one of many characteristic signs of extensive neoplastic disease. It suggests advanced distant metastasis and is associated with poor prognosis.
So I’m happy to think that this isn’t what we’re dealing with!
Mom’s brother, Kirk, is in town from Texas this week. He took Mom out to breakfast yesterday morning, so that was one of her first public outings in the past couple weeks. Her blood pressure continues to be very low, which means that when she walks around she feels really dizzy.
We’re going to talk over the next couple days about whether to try a blood thinner or chemotherapy, and I think Mom will be interested in starting whichever treatments she decides next week.
That’s the news for now!
~Althea
Rainy weather, but Mom’s feeling better
August 7: Still not much to report, but I figured that an update on Mom’s health may be appreciated. We all had a wonderful trip to Jack’s house on the Wisconsin River last weekend. Mom masterminded the menu, created the shopping list, and then she directed some of the cooking, but in general, she didn’t have to do much. It was a great little vacation.
To her great relief, the catheter Mom has in her belly to drain the fluid that’s been building up in her abdomen has stopped leaking. So four the last four days, she can stand up and move around without the threat of getting suddenly drenched without warning. Thank goodness. We’re still speaking about this quietly, though, and hoping it doesn’t start up again.
The next step medically are to try to get a biopsy of the suspected Sister Joseph Nodule. Doctors are conferring about this, and we should know in the next couple days whether they can get something scheduled.
We’d also really like to see if we can’t get Mom’s fluids stabilized. Her blood pressure has been low, she’s been weak and tired, and losing quite a bit of weight. If we can’t cure the situation causing those symptoms, we’d at least like to look at ways to treat them. Mom has been going in to the clinic every few days for infusions of saline, but that hasn’t done much to help her. So I think we’ll be looking at other treatments in the near future.
We all had a lot of fun spending the weekend together. When I talked to her yesterday, Mom was thinking about taking a solo trip out this week. It would be her first time out alone in several weeks.
So that’s the news for now!
~Althea
Mom’s making progress?
August 1: I’ve been pretty wrapped up at work and with evening activities, so I’ve only talked to my mom on the phone the last few days. Not much to report, but I thought that folks might like an update none-the-less.
Mom said that the leaking catheter seems to have slowed somewhat. Yesterday (Tuesday), she went into the oncology clinic for a long time. She had an appointment with Dr. Frontiera, and he said that he had talked with Dr. Matzke about scheduling a biopsy of the suspected Sister Joseph’s Nodule. It was Dr. Frontiera‘s opinion, though, that the suspected nodule was just an old umbilical hernia. Differing opinions can be hopeful! I don’t think we have a date for the biopsy yet, but that’s in the works.
Mom was at the oncology clinic for about six hours, getting two bags of saline infused through IV. She’s been drinking loads of liquids, but so much of it is leaking out of her liver as ascites that her blood pressure is getting pretty low, and she’s feeling fuzzy and tired, and generally dehydrated. Mom’s brother Peter and his wife Marci came up from Iowa and visited Mom during her time at the clinic.
I talked to Mom briefly this morning, and she said that the leaking of catheter seemed to have maybe diminished, so that was hopeful. She was discouraged that after getting all that fluid yesterday that her blood pressure was still low (99), and she is still feeling really light-headed. Throughout the day today, she’s been feeling really wiped out.
We’re getting geared up for our annual trip out to Jack’s house this weekend. Mom’s thinking about the shopping list (we have 15 attendees this year!), and Joe and I are going to acquire the food.
That’s about all I have to report today.
~Althea
Mom’s health update for June and July 2007
July 29: I’ve been holding off on posting anything about my Mom’s health for the last month because, while she has been having health complications, it hasn’t been clear what was going on, and she didn’t want to get people worried while we were waiting to find out answers from her wide team of health experts. At this point, though, it is looking very likely that Mom’s cancer has returned.
Here’s the back story.
I haven’t posted about Mom’s health in many months because there hasn’t been much to say. Here’s a link to past posts I’ve done on Mom’s health. She was diagnosed with pancreatic cancer in May 2005. She then did chemo and chemoradiation throughout the summer with the hope of shrinking the tumor so it could be removed. We met with several surgeons in the fall of 2005 who said they could not operate, but when Mom met with Dr. Farnell at Mayo clinic in December, he said he could operate.
Mom had the major Whipple Procedure done on January 11, 2006 to remove the tumor, most of her pancreas, and sections of intestine and stomach. The surgery was very successful with the one blemish being that there was a positive margin on the Superior Mesenteric Vein. That means that some tumor cells were left in Mom’s body, and given the fierceness with which they regrow, it made her more susceptible for recurrence. We were told that follow-up chemotherapy would help prevent it from coming back.
Mom recovered well from the surgery. She underwent several weeks of follow-up chemo, and over the summer and fall of 2006, she took part in a clinical trial for an immunization to help a person’s immune system fight off pancreatic cancer recurrence.
By fall 2006, Mom was feeling mostly back to normal…more easily fatigued, but generally good. In April 2007, she started back up at work 30 hours/week at American Girl. Every few months she has had a CT scan has happily showed no sign of recurrence.
Summer 2007
In late June, Mom’s abdomen started filling up with fluid. By the end of June, she felt like she was eight months pregnant. She had a CT scan on June 28.
On June 29, we met with Dr. Frontiera, her oncologist. He said that she had a clot in the Portal Vein which drains the liver and spleen. The Portal Vein is is formed by the superior mesenteric vein and splenic vein. Looking at the CT scan, he said that he saw a thickening or fullness in the vein, and said that the cause of the clot may or may not be tumor. Having a clot in the Portal Vein puts stress on the liver and causes fluid, called ascites, to weep from the liver. This fluid is what was causing Mom’s abdomen to swell. Dr. Frontiera said that the main way of dealing with a clot in the Portal Vein is to put Mom on a blood thinner like Cumaden. Unfortunately, Mom has had two episodes of internal bleeding from taking very weak blood thinners, so putting her on a heavy-duty blood thinner carries with it some really serious risks. Dr. Frontiera drained Mom of almost eight liters of fluid (a big relief for her), and tested the fluid to see if it contained cancer cells.
On July 3, we met with Dr. Frontiera again. The results of the fluid (as well as repeat tests) showed suspicious cells, but did not confirm the presence of cancer. Frontiera said that we should regard this as a recurrence. He said that if she wanted to treat it, she could go on Gemzar weekly, but the problem is that response rates to Gemzar, the main pancreatic cancer chemo drug, are just depressingly low.
He said that in a best-case scenario, that the clot in the portal vein is being caused by scaring. He said that Mom come in to the clinic every few days to be drained, or she could have an external catheter so she could drain the fluid herself.
On July 11, we met with Dr. Matzke, Dean Care’s pancreatic surgeon. He said (all doctors do) that he was really impressed with how good Mom looks. I think in reading over her chart that they are expecting someone quite a bit sicker. Dr. Matzke said that he thought that the clot was the cancer coming back. He said that not finding confirmation of cancer in the drained fluid in not uncommon. My main thought at this time is, “Man, this guy is just really trying to burst my bubble of denial that this could be recurrence, isn’t he!” Matzke thought that Mom should be on some type of blood thinner to try to free up the portal vein so her liver could drain properly, and was worried about how her liver will do longer-term as it is not able to drain except though some little veins that have developed to compensate for the clot.
We asked lots of questions about surgical options, and again, this nice, young doctor kept bursting our bubble. He told us that no one would try to remove a tumor in this vein or to try to reconstruct the vein. Matzke had worked for our magic Dr. Farnell at Mayo, and we asked him to give us a referral to see him. Matzke helped make that referral possible.
Mid-July: After going in to the clinic to get drained every few days, Mom decided to have a permanent catheter installed so she could drain the astices herself. She has been draining one-to-two liters each day.
This was kind of a rough time. Mom was still working 30 hours per week, wasn’t feeling very good, and was trying really hard to visit and help her mom in Janesville, deal with the fluid issue, and make doctors appointments. Her sick and vacation time at American Girl were down to just a few days, and poor Mom was more discouraged by this whole situation than I have often seen her. To complicate the situation further, about a week after getting the catheter installed, it started leaking. Actually, I think a better description is probably gushing. Mom would be on her way to work, she’d stand up to get out of the car, and she would find herself soaked. Dr. Frontiera tried several times to tighten up the stitches around the drain. He suggested she try bed rest and drain frequently to help keep the pressure down and help it heal. To our great displeasure, though, several weeks later, it is still leaking, flowing, whatever, and it’s keeping mom housebound.
July 25 – Trip to Mayo: Mom, Dad, Maretta, Kyle, Maretta’s friend Josh, and myself all met in Rochester, Minnesota to meet with the oncologist, Dr. Quevedo and with the surgeon Dr. Farnell. Given the difficulty of making a diagnosis from the CT scans, and given how few people are in Mom’s situation, we wanted to talk with some of the world’s experts before we made any decisions about how to proceed.
Mom’s weight has dropped quite a bit the last couple weeks, and she was feeling pretty light headed, but again, the doctors were all impressed with how good she looks.
Dr. Quevedo was very compassionate and gave us a lot of his time. Unfortunately, his diagnosis was not what we wanted to hear. He said that it looks very much like the cancer is back. He did say that occasionally there is no cancer and that blood thinners can deal with a clot in the portal vein, but that it would be unprofessional of him to say that the cancer wasn’t back. Quevedo said that he didn’t know the right answer about using blood thinners. He said, “Do you cause harm by doing or not doing? We can’t know.” Quevedo talked about the pros and cons of going on a weekly infusion of Gemzar, and talked about the possibility of trying a Phase I clinical trial. Dr. Quevedo said that it’s Mom’s decision about which of these treatments she wants to try. When we pressed him about what he would do, he said that if it was his wife, he would suggest she do no treatments because he felt like the possible benefits of the treatments were outweighed by the side effects and the constant medical appointments. Again, nice doctors giving us information we didn’t want to be hearing.
Dr. Quevedo was impressed with how calmly Mom was receiving all this information, the questions she was asking, and the fact that we were joking and occasionally laughing throughout these dire conversations. That’s my mom!
Dr. Farnell didn’t have good information for us either. He felt pretty certain that the portal vein is blocked by tumor. Above that, he had carefully reviewed Mom’s CT scans and actually identified a few other places where he thinks he might be seeing tumor recurrence. One is called a Sister Joseph nodule, and it’s located outside of the abdominal cavity a little above her belly button. The other two spots he showed us are thickenings (a grey fuzzy area on the CT) around the Superior Mesenteric Vein (the good old SMV) and the Common Iliac Artery. Farnell thought that the clot in the Portal Vein should be treated with blood thinners, because he was worried that the clot could propagate and cause complications.
Unfortunately, he took the rug out from under us by saying that surgery is just not an option. He suggested that we get a biopsy of the Sister Joseph nodule. He also took a look at Mom’s catheter can said that drains often will leak when there is a buildup of fluid in the abdomen. He mentioned a “Denver Shunt” as the only other option for dealing with the fluid (astices) buildup, but didn’t recommend it because of concerns of complications.
So from our trip to Mayo, we learned the following:
- This problem really most likely is cancer recurrence. Hearing it from the doctors at Mayo made this seem a lot more real. I feel like I need to still say though, that despite what the doctors think, the clot could just be scarring.
- Surgery isn’t an option. Not even at Mayo.
- We should get the Sister Joseph nodule biopsied. While we don’t want to have proof that we’re dealing with cancer again, we do want to know what we’re dealing with.
- Using a blood thinner like Cumadin or Heparin has a lot of pros and cons. We may want to see a vascular specialist to help us make this decision.
- Going on Gemzar (aka Gemcitabine) for cancer recurrence has pros and cons. The pros aren’t great. The cons aren’t too bad either.
- Trying out a clinical trial is an option (there are about 27 listed right now). The purpose of a phase I is to determine dosage, so there’s a good likelihood of getting sick. Also, there aren’t any trials available now that look like cures. But this is an option if we want to do something.
Hey, that’s a pretty depressing list. No wonder I’ve been feeling kind of down the last few days. Mom is home now, continuing to deal with the leaking issue, and we’re all starting to try to figure out what all this means and where we go from here. If in reading through this, you have questions, please let me know.
We’ve gotten through the last couple years through a combination of a positive attitude, a blissful state of denial when things were going well, and generally just being very appreciative of each other. I hope that before too long, we can feel like we’re all moving forward with this new situation together. For now, I’ll borrow a line of Anne of Green Gables, “Isn’t it nice to think that tomorrow is a new day, with no mistakes in it yet.”
Carpe Diem – year two!
May 28: Yesterday was a perfect day. It started with Andrew sleeping until nearly 8 am. Andrew normally wakes up at 6:15, and I think he has slept past 7:15 a handful of times in his life. That meant that I got to read Cricket in bed (one of my favorite activities ever) for 45 blissful minutes. When Andrew woke up, he was as sunny as the day, and the two of us made hash browns as a breakfast surprise for Daddy. After our slow and cheerful morning, we headed outdoors to plant the rest of our vegetable garden (summer squash, butternut squash, cucumbers, herbs, and beets in addition to the tomatoes and peas we planted last month). We weeded and gardened, and Andrew did a great job helping us dig and water the plants.
After Andrew’s nap, we headed over to Michael’s house for a Memorial Day bash. This time two years ago, mom was diagnosed with pancreatic cancer, and we are all so happy and relieved beyond belief to be able to celebrate this milestone together. Last year we had a Carpe Diem party for mom (see pictures here). Next year on this weekend, Maretta and Kyle will be getting married!
Michael and his two roommates, Lisa and Alice, each got a kitten in the last couple weeks. Alice has Portia, Lisa has Small Horse, and Michael has Xaxxon. Pictures of the party and of the sweet kitties are in the gallery. Carpe Diem!
Mom’s latest cat scan was clear!
April 25: What good news! I haven’t posted updates on my mom’s pancreatic cancer lately…mostly because there hasn’t been much news to report. Since her surgery at Mayo in January 2006, she has been cancer-free. She did follow-up chemotherapy treatments and a clinical trial for a cancer vaccine at Northwestern University last summer. Her cat scan in January did not show any cancer, and now the scan she had today also did not show any cancer. What a relief!! Mom is scheduled to have quarterly cat scans and appointments with her oncologist (they also check-up on her at Northwestern), so the next one will probably be in July. That means that we can all returned to our favorite state of blissful denial that anything was ever wrong with our sweet mommy. Thank heavens:)
Waiting
On January 11 – exactly one year after Mom’s wonderfully successful surgery, she received word that her blood counts indicate that the pancreatic cancer is reasserting itself. CA 19.9 is a
Mom has a CT scan scheduled for Wednesday, and she has a doctor’s appointment with her oncologist, Dr. Michael Frontiera on Thursday.
** NOTE: I did not publish this note until after my mom’s passing. The tumor marker CA 19.9 is not really a diagnostic tool, and Mom chose not to share with almost everyone that the number was going up.
She told me while the two of us were shopping the after Christmas sales at JC Penny’s. After telling me, she asked if I wanted to go to the JC Penny’s photo studio to get a photo of the two of us. My heart broke. And I declined the photo offer. And hugged I her and told her it would be alright. And then we continued shopping.
Mom’s catscan is clear
Aug. 2: Mom is down in Chicago getting another round of her anti-pancreatic cancer vaccine. She just gave me a call to let me know that her catscan shows that she is free of cancer. Yay! She says she wasn’t worried and didn’t think too much about the results ahead of time, but it’s always a relief to know that her body is keeping cancer at bay.
Mom’s vaccines got done early today. Now she and Maretta are on North Michigan Blvd. in Chicago with a whole afternoon ahead of them. Whatever will they do…
Mom’s recent test shows no cancer
July 16: On Friday, July 14, Mom had a cool-sounding procedure done to break up some kidney stones. While doctors were doing that procedure, they also scoped her bladder to look for cancer. And they didn’t find anything! Mom also met with a new oncologist at her clinic here in Madison last week, and he was really happy with her progress. He said that the main symptom they look for to indicate a re-occuerence of the cancer is weight loss. Mom’s been holding steady for quite some time, now, so that’s good news too. And her new doctor sounds happy to coordinate with her doctor down at Northwestern who is doing the vaccine clinical trial.
I think Mom’s about half-way through the trial. She continues to go down to Chicago every couple weeks for her vaccines. There hasn’t been much to report on Mom’s health recently, and I think of that as very good news.