Journal

Journal entry by Jacob Hampton

A celebration of Linda's life is scheduled to be held at the St. Margaret's Chapel at the lower school campus of Rowland Hall-St. Mark's (RHSM) School at 1:00pm on Saturday, January 5th, 2019. All those wishing to join in celebrating Linda's life are welcome.

The chapel is located on the RHSM Lower School campus
720 Guardsman Way
Salt Lake City, UT 84108
 

In lieu of flowers, please consider a donation to one of the following organizations, in honor of Linda:



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Journal entry by Jacob Hampton

Mom died yesterday evening while we sat with her here at home. 

About 10 days ago we took a Christmas/Chiefs photo. Mom originally wanted to post it online w/ a Christmas message, but she declined so fast that she never really got the chance. I'll post it today and just let everyone know how much she loved and appreciated you.

We're planning on having a memorial service in the relatively near future. I'll post details here as they come. 

Journal entry by Linda Hampton

It's been over a week since my last update and I realize that a lot of people are probably curious about how mom is doing. In a lot of ways, nothing has changed. She continues to be mostly comfortable; certainly there have been some issues with pain, but we've mostly been able to control it. She does get weaker over time, but there's not much we can do about that. She wants to want to eat, but nothing really tastes good for more than a bite for two, unfortunately. She sleeps a lot and has had no trouble sleeping a solid 8-9 hours at night.

She's been good about letting us help her; it's never been something she's comfortable with, but she's getting better with it. 

A lot of texts, letters, and emails are coming our way. We are relaying everything to her at the right time. I know no one expects a response, but I thought I'd let everyone know your notes are seen and appreciated. It's been harder and harder for her to have the energy to see people, so it's a nice way for her to have time w/ people, in a way. And thank you to those of you who have been a part of the food train (and those of you who didn't have a chance to sign up); we've wanted for nothing!

Love to you all.

Journal entry by Jacob Hampton

I've been staying with mom at her house since she discharged home Tuesday; Zach is taking over today, and we'll continue to switch off week-to-week to take care of her.

So far mom's doing ok. Her appetite isn't very good, and she remains extremely weak, but she's able to get up from bed a few times a day using a walker. She's tired most of the time and dozes off and on. She has been sleeping really well at night.

She and I both agreed that our evenings after dinner have been---considering the circumstances---very pleasant. We usually have a fire going and can just relax, and talk about anything other than cancer. We fall asleep to random football games or nature documentaries and generally just enjoy each other's company. 

As I can't say it enough, thank you again to the dozens of you who have helped out or reached out during all of this.

Journal entry by Jacob Hampton

We got mom home tonight. She had some reservations about leaving the hospital as she was safe and as comfortable as she could be there, but she seems to be doing well so far. She'll get a short daily nursing visit and otherwise we'll be here to do what she needs. 

She has a hospital bed we've set up in the family room so we can hang out, make fires, and hopefully keep things homey.

Journal entry by Jacob Hampton

I apologize for the day's delay in updating, but we wanted to be sure what we were doing before letting everyone know.

Mom is still in the hospital; she's most likely going home tomorrow, or possibly Wednesday. She decided she wants hospice, as it's simply too much to go on with everything she's been dealing with. She, and we, are sad, to put it mildly. That said, we all agree it's the best thing for her, and that's all that really matters. We now want nothing more than to give her the best while we still have her around.

Right now the plan is to (hopefully) do two things to help her be more comfortable: 1) add a drain that will allow us to remove abdominal fluid frequently and stop the build-up that has so often been the bain of her existence in recent months; and 2) do another nerve plexus block to help ease her back pain (this will be the same block she received back in August when her biopsy was done). 

Once these procedures are done, she'll be discharged to her home where hospice care will be initiated. She'll have equipment, such as a hospital bed, as well as a hospice team to help manage her care. The majority of her care, however, will come from 24/7 live-in care from family. Zach, Emily and I will take point on this, mostly because we want to be there for and with her. We promise to reach out to those who are willing and able to spell us whenever needed.

After going over details and getting a good idea of what to expect, mom seemed to be in relatively good spirits this afternoon, all things considered. It's hard for her to accept help, even in her current weakened condition (she cannot stand without assistance), but she does acknowledge that we help out of love and do not feel the burden she certainly feels she is. There's no way for her to completely rid herself of those thoughts (understandably), but I do think she's accepted what will be and will make of it what she can. The timeline is unknowable, but the best guess is that her life can be measured in weeks. 

For everyone else, please know that we'll need to be settled before she can determine whether or not she can take visitors. It's unknowable at this point whether or not she'll ever take visitors again. Regardless, please know that she says multiple times daily how GRATEFUL she is to every single one of you. She has never felt more loved in her life. She truly can't believe the response she's gotten; she loves you all so, so, so much. 

From Zach, Emily, and me: we also are so grateful for everything you've been for her and for us.

I will, of course, continue to update everyone on how she's doing.

Journal entry by Jacob Hampton

We visited mom for a long while today. She's tired and weak, but comfortable. She had an endoscopy around noon to look for a source of bleeding. Nothing active was found; just old blood. The theory is that the bleed occurred due to some inflammation around the stomach/intestine, possibly due to the tumor or even the bile duct stent placed a couple of weeks ago. Her blood counts have stabilized, so they won't plan any additional tranfusions. She'll need to start eating (had some soup that tasted really good tonight) and get to the point where she's eating well before she discharges. It'll possibly be tomorrow, but we don't really know for sure yet. They'll also have to make a decision about whether or not to continue her blood thinners. She now has had multiple bleeds and clots, so there's a significant amount of risk with either decision.

With complications piling up, she's tired of dealing with everything. We talked for a long time today and she's not getting much quality time in life. Assuming she's out of the hospital early this week, we're planning to have the oncology team at the clinic lay out all of her options on Wednesday at her next appointment to decide what she wants to do next.

Journal entry by Jacob Hampton

I apologize for the dearth of updates lately, but unfortunately, mom is admitted to the hospital again.

Briefly, since the last update, she has not yet been able to have her new chemo regimen due to problems with labs (specifically liver function tests) not yet dropping back to normal after her bile duct stent placement. This past Monday she had another paracentesis to remove fluid from her abdomen (7.5 liters this time) with an infusion of albumin, a major blood protein that she had been low on. 

Today I was talking to her and realized based on some symptoms she was discussing that she likely had another GI bleed. Zach and I went over there immediately to take her to the hospital, but she was unable to stand on her own or even with our help, so we called the paramedics. She was worked up in the ER tonight and it was, in fact, a bleed. They admitted her to Huntsman Cancer Institute (where she remarked multiple times how much nicer the room was compared to her last hospital stay) where she'll await a plan in the morning, most likely an endoscopy to determine the source of the bleed and try to fix the problem. 

When we left her she was doing ok. Extremely tired, but well-cared-for and relatively comfortable. We'll be back to see her in the morning. I'll update as we go.

Journal entry by Jacob Hampton

We met with the nurse practitioner yesterday to discuss treatment plans. It was pretty straightforward; just moving on to 2nd-line treatment of abraxane/gemcitabine. It's 2nd-line for a reason; the success rate is lower than the FOLFIRINOX they started with. It'll also be weekly rather than ever 2 weeks. However, the upside is that the infusion only takes an hour (vs the 6-7 hours of the previous regimen) and the number and severity of potential side effects is lower (though there are no guarantees this will pan out in reality; it can vary person-to-person). They did say it's likely mom will lose her hair, which she was honestly kind of happy about since her hair has been thinning recently and has been driving her nuts.

Her labs all looked good, but we'll be waiting until next week to start the new regimen to allow a couple of her liver function tests to make their way back to baseline/normal.

As always, the ascites seems to be the worst of everything. It's made it hard to eat even though mom is hungry most days. She's lost quite a bit of weight as a result, but we're doing our best to get as many calories into her as we reasonably can.

Journal entry by Jacob Hampton

Since I'm starting this journal more than 3 weeks after Linda's diagnosis, I've summarized the events relating to her diagnosis below, ending with our most recent update.

  • On August 1st, a CT scan at the ER showed a mass on her pancreas that had been causing her pain/discomfort for multiple months. It was almost certainly a malignant mass.
  • On August 3rd she met with a medical oncologist who confirmed that the chances of malignant disease were high. The plan would be to biopsy the mass to confirm malignancy (and subsequently start chemo) and do a scan to look for metastases to determine if surgery should be a goal (if metastatic, surgery would be unlikely)
  • On August 10th a biopsy and ultrasound of the mass were done which confirmed malignancy. A permanent block of the nerve plexus was also done at this time to relieve the pain she had been fighting. While the major pain related to the mass was mitigated, she did continue to have other lower back and abdominal pains for the next 2 weeks.
  • On August 20th she had a port-a-cath placed to give easy access for chemotherapy infusions
  • On August 21st she had her first round of chemotherapy (to be scheduled every 2 weeks for 6 months). It was a long day (especially as she was experiencing some lower back discomfort at the time), but overall uneventful. The next day she was fatigued, but actually feeling quite good overall---the best she had in a while. Part of the chemotherapy is wearing a pump for one drug that needs to be infused over 46 hours.
  • On August 23rd I (Jacob) picked her up around noon to take her to have her pump discontinued and a CT scan of her chest done (to look for metastases). She was in extreme pain in her lower back radiating into her right shoulder blade. We got her to the clinic where her pump was removed and her port access replaced; from there we were sent to the ER to find the reason for the pain.
  • At the ER a CT of the chest and abdomen were done. A large mass of fluid in the retroperitoneal space was found in the posterior abdomen below the diaphragm, as well as a large mass of fluid in the pleural space around the right lung. Her vital signs and labs were all within normal limits, which was surprising as such a mass of fluid would almost certainly be a sign of infection.
  • On August 24th a thoracotomy was performed by a cardiothoracic surgeon to remove fluid around the lung and place a drain. We visited her post-op and she was feeling better than she had in 2 weeks. The pain and discomfort had subsided greatly and she was in good spirits.  
As of today, the plan is for interventional radiology to (carefully) place a drain in the abdomen to remove the fluid there. The fluid is believed to have originated from the pancreatic biopsy site done on 8/10, which may explain a lot of the discomfort she's felt since that time.

She will be in the hospital several days as they need to continue treating her with antibiotics and stimulate her white blood cells to fight whatever infection is present, as the chemotherapy she received early in the week will knock those counts down and reduce her ability to fight it off.

We'll visit her this morning for a bit and then again after the surgery. For now, we're optimistic that this will make her feel better and give her a chance to enjoy herself as much as she can while she goes through treatment (she's very much been herself in the hospital). Chemo will likely be pushed off schedule while she heals from all of this, but it's hard to say for how long.

I'll finish this first post by saying thank you to everyone who has shown their support. I'm simply not able to describe how incredible people have been. Please know that we know you're there and it's been more help than you can imagine.
Linda’s Story

Site created on August 24, 2018

Welcome to Linda's page! Linda was diagnosed with pancreatic cancer on August 2nd, 2018. You can check here for regular updates regarding her health and her care. 

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