So, I'm going to start this little section on my profile, so I can let people know what's going on with my mother Kim and her esophageal cancer without it being this public blog that people feel they have to read or respond to. The writing helps me to vent/process and please feel free to still drop me a note if you'd like. As things progress, I'm just not as comfortable sharing in a way which forces so many people to view it. It's a bit long, but its in descending chronological order so you can just see the updates if you've already checked this out.
***
7/5/06 - Mom is declining fast. She is alseep most of the time, very few moments of lucidity. We are close to the end and that is sad, but she is peaceful and comfortable. And that is good.
6/22/06 - So we are officially on hospice care now. For the past few weeks Mom has been vomitting a lot and it often includes blood, so chemo was no longer a possibility. It was more psychologically unsettlinging than anything else to make the move since hospice is only available to you when your doctor says you have 6 months or less to live. She has adjusted well though, really likes our hospice nurse, and is enjoying the perks of being on hospice (like prescriptions delivered to the door with no co-pays). Hospice is really aimed at comfort and they are doing a good job with that. The pain and the nauseau are the 2 biggest battles, but we fight it with meds pretty much round the clock. Mom is in good spirits and is still fairly strong, so I am able to leave her a couple times a week to go out (to take care of me!) and she is able to set up her feeding and give herself the meds I set up for her (through her feeding tube). She is weaker than she was, but still feeling okay and we're having a fun time.
6/1/06 - It's been a rough few weeks. Mom is feeling better and getting stronger, but it's definitely a 2 steps forward, 1 step back deal. Two days ago, Mom had a CT scan, then later that night her feeding tube got blocked, so she spent all day yesterday at Mass General getting it unblocked while I was at home coordinating the bed swap (they took the rented hospoital bed away and we got a new Craftmatic type adjustable bed delivered ($2000, but well worth it, I think, for her comfort). The blockage in her tube was caused by the pills we were dissolving into it, so we had to stop that and switch to all liquid meds we could administer via the feeding tube (since any liquid taken orally makes her vomit). So today we came in to see the doc about the pain meds and she threw up a bunch of blood. We talked them out of admitting her, but it's something we need to watch.
She is feeling better, and she still wants to do chemo. The doctor was so-so on the idea as it only has a 1in 10 chance of supressing the cancer which is growing rapidly. He basically laid out the facts and said we need to be prepared that she could die at any time. He was alright with the decision to try chemo, but he is not terribly optimistic. The chemo, if it works, will show results in 4 weeks though, so the plan is to try chemo starting next week and assess every week. It won't be worth the discomfort if it's not working. So it's been a long day...
5/15/06 - So things have been up and down and down and up. Right now we are up. After 10 days in the hospital and 2 operations, Mom is home again. She had a stent put in, but it is still too tight for her to eat or swallow much. She also now has a feeding tube and is getting nutrition that way. I am also grinding up her pills for now that way. This is much better than the 2 hours it was taking her to swallow 3 miniscule pills an 2 normal sized gel caps. Iit's also amazing to see how fast medicine works when dissolved! From articulate to slurring in 3.5 minutes, or so it seems. But seriously, Mom is on the mend and the visiting nurse assures me she should be able to handle the tube feeds herself.
5/6/06 - Mom had a rough time in Curacao, for the 1st time nothing was able to be kept down. Food and drink alike would come right back up. She spent 2 days in the hospital there being hydrated. When she returned to Boston on Wednesday, she was admitted to Mass General so they could put the stent in. Thursday they got the stent in. As of today, Saturday, she is still in the hospital because she has a low grade fever and is still eating very little (says it hurts to swallow). The key to letting her out is her being able to consume enough nutrients on her own. If this doesn't happen by Monday, they want to discuss putting a feeding tube directly into her stomach. :(
4/27/06 - No stent this week. Apparently you can sometimes have internal bleeding afterwards so they talked Mom out of having it put in and then leaving the country for a week. It will go in on May 5th instead which only gives us 2 full days after she flies back from Curacao to figure out what to do about her bed. Eek! I think she's going to rent a hospital bed for a bit while she adjusts and decides whether to spend the 5-6K on a Craftmatic or other adjustable bed. Can you imagine not being able to ever sleep flat again?!
4/20/06 - This has been the hardest week since we found out in January that surgery was no longer an option. Mom has been having a lot of trouble getting food down and sometimes it's not just the nausea. Last week she was throwing up water one day and it was still cold (meaning it never actually made it down to her stomach). This is bad. They did an endoscopy and saw that the tumor is tight on her esophagus and that her stomach is "more tumor than stomach". Why they couldn't see this on the CT scan they did the week before is beyond me. Anyway, they took her off her chemo regimen because the stomach tumor mass is growing despite being on chemo for 10 weeks. She will either start a new chemo regimen with a known drug or she may be placed on a Phase I clinical trial. They stopped her chemo immediately because the clinical trial would require a 4 week chemo-free period before starting.
The other event is the she is definitely getting a stent implanted into her esophagus. The stent (I called it a feeding tube before, but have more info now) will essentially hold open her esophagus so food can get down. This is good as food, drink, and sleep and the 3 main ingredients to keeping her healthy during all of this. The downside of this is that since her tumor is at the bottom of her esophagus it will also be holding things open for all those nasty stomach acids to come up and make life miserable. The doctor said she will never sleep lying flat again and will even have trouble when bending over to tie her shoes. Not fun, not fun at all.
In all of this though, my mother is still fighting, stil making the best of the hand she's got. She is in Washington, DC right now for a mystery book lover's conference called Malice Domestic. An author she has come to know (Kathryn Neville - "The Eight") has invited her to a cocktail party in her swanky flat. Show not only has invited her, but asked her to review the list of other authors attending the conference and tell her who else she would like invited.
So she flies back on Sunday, sees the doctor on Monday. She leaves for Curacao on Tuesday on what was to be her last scuba diving trip. SHe has been so exhausted though from not being able to get enough nutrients that she has decided not to dive and is going to just snorkel instead. She even managed to wangle an appointment to get the stent put in for Monday (the day between her 2 trips). When her main doctor found out (she's got a main doctor, but also the endoscpy doctor, etc.), he was alarmed. Even though my mother cleared the fact that she was flying the next day with the doctor doing the procedure, her main doctor did not like the idea of it being put in and her then being away for a week. So, on Monday they will decide whether they let her move forward with it. I think it might be better to wait as the stent will likely take some getting used to. I'm not even sure if snorkeling will be comfortable if bending over and lying down are not.
The good side of this is that since they stopped the chemo, she will be much more comfortable on this trip than she would have been. Although, as this experience has shown me, you can get comfortable with a lot of things. My mother, for instance, is comfortable with heaving at the start of every eating experience. She doesn't actually throw up, but it's like riding a bronco bull some days. You and I think that would be horrible, but that's the human spirit right there. Yes it sucks and its uncomfortable, but the alternative is to give up. If the food comes up, no nutrients are gained and more weight will be lost. My mother now weighs 190 pounds. She weighed 255-260 last summer. I shudder to think how little she would weigh if she gave in to her body every time it heaved.
If I've learned anything from this (and I'm sure I've learned lots of things), it's that we all have the strength to endure. Things sometimes feel tough and hard, but we keep going, we keep learning, we keep reaching.
Whoo...sorry this was so long. I guess I had a lot to say this week.
