A Sad But Happy Ending

On Thursday (yesterday) at 5 p.m. she (for the first time in a long time) wanted to lay on her side. Jenn suspected this was because her left lung may have collapsed which relieved some pressure the tumors were causing on that side, so she was able to comfortably lay on that side. After Aunt Jeanne rolled her, she pretty much fell asleep and didn't wake up. She opened her eyes when I got home from the grocery store at 7:00 and looked at me and Jenn. She continued to do it a few more times over the next couple hours when we would talk to her, but it was just this wide eyed glance, but I know she was just trying to see us for a second. By about 9 she hadn't moved or opened her eyes and was pretty much comatose. Around midnight we moved her over in the bed a bit so she wasn't so close to the edge. Then I put some moisturizing gel on the surfaces in her mouth because she had severe xerostomia this last week. Then I put chapstick on her. Then about 20-30 minutes later she tried to leave us... I noticed her lips and chin looked really gray. I called Jenn and Jeanne's attention to it then her whole face started to turn really gray and had a tiny bit of gurgling and then she started to stop breathing. But about a minute later she started to breathe again and gained her color back. We kinda think that maybe moving her around caused her to do what happened, but we were definitely expecting her to pass some time today after our night last night. Me, Jenn and Jeanne slept in the living room with her. We woke up at about 7:45 and told mom good morning, that we were glad she was here, told her how much we loved her, how important she was to us and that she didn't need to keep hanging on. We let her know what we were doing... Jenn fixed coffee, I took a shower, etc. One of us was always with her. Around 10:30, Jenn said she was going to shower. I said, "Okay" (as I was sitting with mom), then I said, "Actually, maybe you should wait a minute." I could see she had kind of swallowed a bit, but Jenn didn't see it. Then she did it a couple more times and started making gurgling/snoring sounds. It happened a couple minutes later at about 10:30 when she took her last two breaths. Her carotid pulse felt like ripples in water about 30 minutes after her last breath. She obviously had a VERY strong heart and acted like the strong willed lady she always was. I'm really glad she's in a better place with our heavenly father and doesn't have to suffer any longer. This didn't start out to be this long of a post and I apologize if it ended up with a few more details than you expected.

The disease is definitely taking over her body. She is so weak, hardly eats and sleeps a great deal, but is very uncomfortable, so wakes up often, but isn't in pain. The difference between yesterday and today is huge. This morning started at 4:00 with anxiety and her feeling shaky. She had a fever and her legs were ice cold. The morning involved a lot of confusion about why she felt the way she did. She wanted to know where John was and when he woke up she demanded that he 'hold her.' We massaged her legs, held her hand and tried to help her relax. After giving her another half dose of lorazepam (for anxiety) she relaxed and fell back asleep. This morning around 8:30, she asked Jenn if she was sick. Jenn told her she had cancer and it was very fast moving. She was comparing how she felt (with being so sleepy/drugged) with the fact that she really is sick and she was coming to the understanding that the cancer is making her fell the way she does, and that it's not the drugs we gave her. It was really sad to say the least. Unfortunately, the 'signs of approaching death' are surfacing. I just pray that it's a quick process from here on out!

A Turn For The Worse

Unfortunately, my mom has taken a turn for the worse. She had a visit with the oncologist on Tuesday and they decided it was best if she quit the Tarceva all together. It's a little too much, a little too late. Mom complains that it's making her very sick, she's having trouble sleeping (getting 2-4hrs/night) and not eating. Between her, John (my step-dad) and the oncologist, they've decided that this is the best decision for them at this time. When mom asked how much time the oncologist thought she had left, Dr. Regante stated... 2 weeks, maybe 3, maybe 4.

I know, it's heart breaking, but mom is so out of energy. She's down to 121 lbs. She doesn't sleep well at all, coughing robs her of all her energy and she has no appetite. Having a simple phone conversation seems to be almost too much for her. So I'm simply and graciously putting my life on hold here in Japan to spend all the remaining time I have with my mom. We're still praying for a miracle!

Update

So there's a lot that's gone on since the last post.....

Things have gotten worse and my mom is realizing the severity of this illness. She went to an alternative cancer doctor  (Dr. Forsythe) who prescribed a regimen of infusions and supplements and recommended taking Tarceva concurrently with the alternative regimen. 

She started with the infusions which after a few days caused her to retain fluid in her legs and on the outside of her lungs. This time it was her right lung, which has overall been healthy, but she found out (right when she sought out Dr. Forsythe because she had just had a CT Scan) that the tumors have drastically increased in size and have metastasized to the pleural lining of the right lung as well. She immediately stopped the daily infusions and went to the hospital a couple days later for a scheduled thorocentesis. They informed her that there was no longer an adequate amount of fluid that would require getting the procedure done, so spirits were high and she was sent home.

She has gone from 2ml of O2 to 4ml of O2 in the last couple of weeks, as well. Her breathing has become very shallow and she is out of breath after walking from one end of her house to the other.

Mom consented to taking the Tarceva, but was VERY nervous about it and ended up going back into the Oncologist's office to have her clarify exactly when and how to take the drug. "Once a day either 1 hour before you eat or 2 hours after you eat." This threw mom for a loop and she stressed, "When am I going to eat then, I can't go all day without eating." Again, she reiterated exactly when to take it and mom understood. So she went home and started it a couple day slater.

I think she's been on it for about a week and the only side effect so far is her face breaking out. She said it's like acne, but kind of itchy as well. My sister keeps telling me that mom is so negative and I can hear her on the phone being that way, too. It breaks my heart to hear my mom struggling and being uncomfortable and scared. Death is a crazy thing and I am seeing how unbelievably scary it can be.

Jenn is leaving tomorrow to move to North Carolina and mom is so depressed about this. She is always saying, "I hope I make it until your sister comes, and then I hope it I make it until you come back." I am showing up in 3 weeks and Jenn is coming back in 4. So Jenn sat down with mom yesterday (like she has many times before) and tried to shine some light on being positive... Telling yourself that you're going to get better, that you're going to see your daughters in 3 and 4 weeks and these are tough times right now, but you'll pull through. The Tarceva will work and make you better. Not just hoping it will work, but telling your body it WILL work and be healed.

Positive, positive, positive, that's all you can really do.

Sunny Day

I just wanted to share that mom was able to join us for church for the last 2 Sunday's and they've both been great. Mom is alive when she is at Church and I wanted her to have this same feeling during the week, outside of attending doctor's appointments.

So, this morning I was going to go to Jenn's for breakfast and I invited my mom (like I do almost every morning that I go to my sis's for breakfast) and she said YES! It took us an extra 30 minutes or so to get out of the house, but we made it! It was beautiful out, too. Sunny skies, warm weather, dogs playing together (and mauling my thumb), it was a great day!

Last Minute Thoughts

You know how it is when you're drifting off to sleep and you remember all those things you didn't get done or need to do tomorrow. Well, tonight was one of those nights for my mom. Right when she got in bed she remembered the 'tea' that had been steeping all day. It's this special brew she fixed this morning, it had to set for 12 hours, be boiled for another 10 minutes, strained and then put in amber bottles. Well, let's just say we're a makeshift kind of family.

No strainer

No amber bottles

Makeshift #1: Mom saves (almost) everything, so we used a combo of mason jars and old spaghetti jars.

Makeshift #2: We decided we would put foil around the jars to block out the light.

Makeshift #3: Strainer

Idea #1: Find the mysterious strainer

Idea #2: Use the regular pasta strainer with cheesecloth laid in it while dumping the hot tea over it and into another pot.

Idea #3: Use a pot with that grease spatter thing with the handle on it that you can put over pans when cooking something splattery.

Idea #3 Wins! This tea was more like a cauldron and in the last 4 minutes of boiling, it completely boils over onto the glass top stove with all the pieces of who knows what in tote. The smell is just downright lovely (if you lived in the trees). We get to the last bit of liquid (and chunk) that we're straining [my mom with a towel wrapped around her hand holding the makeshift strainer thing over the pot which was propped on an upside down measuring glass in the sink) and let me tell you this is not the last thing you want to see before you lay your sleepy eyes to rest for the evening.

We made it through, no burns, no mess, no broken jars, etc. A few laughs and hopefully some yummy tea (although that's up for decision tomorrow).

Non-small cell Adenocarcinoma

The results came back for the PET scan and the pulmonologist informed us that the scans showed that the cancer is localized to the pleural lining of the left lung and partially on the right lung and diaphragm. It has not metastasized anywhere else that they can see. Thank you GOD! Still inoperable and radiation treatment won't affect it.

Overall, I think mom's doing well. She is able to take care of herself and fix meals as long as she has catnaps. She has her bouts of dealing with the emotional aspect, but don''t we all?!? We've definitely shed some tears together and today was one of those afternoons. Between us rummaging through old I love you notes to her from when Jenn and I were small to me almost reaching my witts end (It was completely my fault and I did apologize, but still feel bad about it), to all the what ifs, it was an emotional day. I think everyone needed a nap.

So tonight she's complaining of her stomach hurting. She said it's because of the inhaler she used, but I was having my doubts. So she starts her 'evening coughing before she heads off to bed' ritual and what do ya know... she ends up throwing up and admits immediately that her stomach feels better. I was like, well, what did you eat?

(Silence) Then a quiet little, "A part of a plum."

"Like a slice?" I inquire.

"It was a leftover in a baggie."

I was like, hello?!?, "Don't you think it was probably bad?"

"Well," she replied, "It looked borderline, but I thought it would be okay."

Here I am being the mommy. I was like Mom! You can't be eating food that you're unsure of anymore. She was like, no doubt!

I love my mom!

So hopefully no more borderline plums and all tummies will be feeling well.

Everything's a Little Blurry

Funny story: Mom woke up this morning and sat up and thought, "Oh my gosh, everything's blurry." So she went to feel around to see what was the matter and found her cannula on the bridge of her nose blocking her morning view. Phew!

MRI, CT, PET

Today and yesterday were mostly spent at doctor''s offices so my mom could get scans done. On Monday we'll know more about the extent of the cancer and if it's localized or not. 

Dr. Visits

Mom got her sutures taken out today, which went well. We also saw the pulmonologist and she noted that the the most recent radiology report shows increased aeration in mom's left lung, so this was good news. Everything else has changed the same, so that can be good news as well.

Oncology Appointment

Nothing new so far, really. The oncologist said surgery wasn't an option and radiation therapy won't work. Chemo is an option, but he doubts it will work and said you just never know. He was really nonchalant about everything, which I thought was weird. I asked what the life expectancy was on chemo compared to no chemo. He said it's really hard to tell and left it at that. It was almost impossible to get him to answer my questions anyways. I would say, "Well, I have a question." And he'd start talking to my mom or he'd say, "Yes?" And I start to ask the question and he'd start talking again. It was so frustrating. I almost wonder if he read the surgeons notes that my mom was against chemo, so he basically gave her what she wanted to hear. Who knows. He said there's a drug called Tarceva that has been effective in younger women with lung cancer and that mom fits that profile. It is effective pretty fast, so you'll know right away if it's going to work or not. After talking to one of my other friends in California, she urged me to have mom see an alternative Dr. for cancer. I'm not sure why I didn't think of that, probably because I figured my mom already had. I suggested it and she said she's going to call around and find an alternative Dr. on Monday. Apparently Nevada is a great state for Dr's of alternative medicine because of the lax laws on the subject here. She has a PET scan and a brain scan on Friday. The oncologist wants to check to see if it's metastasized anywhere, specifically her brain.

Family Ties

I arrived in S.F. on Saturday and my Dad picked me up from the airport to drive to Reno. The drive was good. I could totally tell he was thinking, "God, this could be me in her shoes." He was reminiscing the entire way home and asking me if I remembered when... He's really sad about the whole thing, too. My sister and I are both hanging in and I just think every day that I am so lucky to have a great sister and best friend like Jenn. I know that not many people have as close of a relationship with someone as we do with each other.I did some research and found out that the surgeon just put an antibiotic in the chest tubes. It acts like an irritant the same as the talc powder. It seems like it's a different way of doing the same thing (pleurodesis). They didn't really ever tell her what kind of cancer she has. I have some ideas (definitely adenocarcinoma and possibly Mesothelioma), but we'll see what the oncologist says on Wednesday.

She came home late this afternoon. At about 8:00 she started coughing pretty often and had some fluid to cough up, which isn't really good. It lasted a couple of hours but she's doing better and napping on the couch.

The tumors are starting to collapse the top portion of her left lung. Basically when the seal the doc made stops holding, things will probably get pretty bad. He said it could be days, weeks or months. If the cancer isn't gone by that time, then it's not looking good. I can't WAIT for the appointment on Wed, but I have a feeling that Jenn and I aren't going to be very happy. Jenn politely reminded me that it's in God's hands (hopefully our interest is in his hands, too). We're prepared for the worst, but hoping for the best and just really sad that this is happening.

Day After the Pleurodesis

 

She was sent home a couple days later. To rest, be comfortable, hang out with her family and eat healthy food!

 mom's surgery didn't go as well as planned and it basically wasn't holding together as much as it was supposed to, so whe was leaking lots of fluid from her drainage tubes. The news was pretty hard on her, especially since the surgeon 'reiterated' that her cancer is very serious and he was embarrassed the procedure didn't work. As a last option, they did a procedure where they inject an antibiotic into the chest tubes (which irritates the linings the same as the talc). She had to lay on 6 different sides for 2 hours, switching every 20 minutes. It was a pain and uncomfortable, especially with the chest tubes in, but IT WORKED!

So good news this evening...the fluid from the drainage tubes was minimal and she's coming home Monday (tomorrow). We're really excited. So until Wednesday when she sees the oncologist, I'll be in one piece. 

Life Is Fragile

A little bit of history...

My mom has overall kept herself very healthy. She's very much into nutrition, against the use of antibiotics and anything else that destroys your body, especially on a cellular level. She's eaten organic the past few years, rarely gets a cold, has never smoked, has been married for 23 years, has two lovely daughters who are twins and is a Christian. I know these details may sound random, but I think they're important for the events that follow.

In November, 2008 mom had a cold that had been bothering her, especially the cough. I remember when I was in Reno in September that she had complained of a slight cough, but it wasn't remarkable. In November when I came down from Alaska to have Thanksgiving with my family, she was straight up sick. She resisted going to the doctor, even though my sister and I strongly urged her. She didn't want to go because she knew she wouldn't take antibiotics, so thought it was a waste of time.

Right before Christmas, she FINALLY went to her physician. I don't have exact details, but here is the gist of the situation:

Dr. Green prescribed her an antibiotic which didn't change my mom's symptoms of coughing consistently to the point it would make her vomit. She didn't have any other symptoms at the time. She followed up with Dr. Green at the end of January when she was still experiencing the same coughing. She took 2 rounds of the Z-pack and had an image completed that showed masses in her lungs and was then referred to the pulmonologist. 

The end of February, the pulmonologist went in orthoscopically, but found nothing. When my mom told me about this, I was floored and questioned why she left the office with that empty explanation. My mom didn't sound worried and I was upset and asked what exactly they meant by, "no findings." It's hard to get the entire picture, being clear across the Pacific, so I decided to let my mom handle it. If she was okay with the fact that there were masses in the picture, but they couldn't find anything, then there wasn't anything I could really do about it.

The Pulmonologist took a biopsy of the inside of her lung. They planned on culturing it for 30 days to see what kind of bacteria it was so they could give my mom something for it.

Two days after my mom's 62nd birthday, she went to her doctor because she was very short of breath. She was sent to the ER because her O2 saturation was 85% and pulse was 125.

The ER found that the pleural lining of the left lung was filled with fluid. They performed a thorocentesis and after 1L the standard is to reassess. They cultured the fluid and informed her the next morning that she had Stage IV cancer. At this moment, I realized the severity of the situation and bought a plane ticket home.

The surgeon recommended a procedure called pleurocentesis. They go in lathroscopically, irritate the lung lining with talc and this causes the linings to stick together, causing scarring on the lung so the fluid can not collect. Mom was against the surgery and was putting off getting it done. I urged her to follow through because it was better to have a planned surgery now rather than have her lung collapse and require emergency surgery which would then be a train wreck compared to now being a planned operation.  A couple of days later, after strong urging from family and physicians, mom gave her consent, her lung had collapsed and they brought her into surgery.

Thank You!

First of all, I want to thank Daniel and Kati for creating this page for my family. My mom absolutely LOVES flowers and is going to love this page. Thank you so much for your thoughtfulness, creativity, time and friendship!!! Love you!