Machine Down Again

Treatments 9-13

Last week's treatments were uneventful. Ma was supposed to get an additional treatment on Sunday to make up for Christmas Day, but the machine broke again. It was still broken yesterday. This is the 3rd time it's gone down since Thanksgiving.

Ma gets Christmas Day off, but she's scheduled for treatment on Friday and Saturday. The schedule will probably be similar next week to make up for New Year's Day.

Kit is here. She arrived Friday and is staying till the 28th.

Another Short Week

Treatments 4-8

I've been lazy about posting updates. Sorry about that.

On Monday, the machine was still broken. The cancer center said to show up at 5:30pm instead of Ma's usual time of 1:45pm. When we got to the center, they said we were supposed to come at 8:30pm, not 5:30. So we left. But Ma didn't want to go that late for her treatment. Pa called at 8pm to cancel. No one answered, and he left a message. The next day the center said they were expecting Ma at 7pm.

Ma managed to get her treatments Tuesday-Friday. Because she had missed 3 treatments -- Thursday and Friday last week, and Monday this week, 3 additional days will be tacked on to her original last day of treatment to make up for it. Dr. Shank, who we saw on Tuesday, said that Ma got a slightly increased dose this week to make up for Monday. So she only has to make up for 2 days instead of 3.

I've been keeping up the walks with Ma. It gets expensive though because I usually end up buying something. Yesterday I got some Christmas shopping done at Barnes & Noble.

Radiation Machine Down

Ma's radiation treatments for today and tomorrow were cancelled because the radiation machine broke down. When we got Ma's treatment schedule, we were told that the last day of treatment could change depending on whether there's a machine breakdown. So this is not unexpected. I think the last breakdown was the day before Thanksgiving. That's only a week ago. I hope this doesn't happen too often. It's an old machine, about 16 years old. Not exactly state-of-the-art.

Ma agreed to go for a walk today at Big Lots. I think she's more motivated when there's stuff she can look at. We were at the store for half an hour. She spent more time standing than walking, but she didn't sit down. Towards the end, she complained about pain behind both her knees. They hurt only when she walks, not when she stands or sits.

Radiation - Session 2

Ma's day started off with a follow-up with her surgeon. The hole in her breast is much smaller, and Dr. Cogen is happy with the healing progress.

Afterwards we went to Andrea's for lunch. We had paksiw na lechon, pinakbet, and pancit palabok. My friend Joji stopped by for a chat, and she sent us home with desserts and more pinakbet.

Back at the cancer center, Ma had a short visit with Dr. Shank, the radiation oncologist, before her treatment. From now on she'll see Dr. Shank every Tuesday after her radiation. The treatment itself was uneventful, and I didn't even bother staying in the control room to watch. I'll have to ask if I can take photos of the room where Ma gets her treatment.

Radiation - Session 1

Ma had her first radiation treatment today. It went well. The actual radiation took only about 10 minutes. Dressing and undressing took a lot longer.

With Tito Luming on vacation, Ma has been cooking the last two days. She was complaining about her knee hurting from standing too long in the kitchen. But she consented to a stop at Home Depot where we had a short walk.

Radiation - Trial Run

Today Ma went for her radiation trial run. I don't know exactly what was done to her because I was kicked out of the room. Some x-rays were taken though. Tomorrow the real radiation session starts.

On the way home I had to stop at Home Depot to check out something and asked Ma if she's willing to walk around inside. She did for about 5 minutes. I told her I'll stop at Home Depot every day after her radiation treatment so that she'll get some exercise. She'll have no choice since I'm driving. Exercise will also help with the inevitable fatigue she'll get from her treatments.

Radiation Planning Phase

Ma went to the cancer center today to prep for her radiation. They marked her chest with tattoo dots. I thought the dots would  be temporary tattoos, but no, they're permanent and blue. She also has some black marks, but I think those are from a permanent marker. In addition, she had a CT scan.

Afterwards we went to Dr. Cogen for a follow-up visit. I'm still worried about radiation starting before Ma's wound has completely healed, but neither Dr. Cogen nor Dr. Shank (the onco) is concerned.

After the appointment with Dr. Cogen, we went back to the cancer center to have Ma's port-a-cath flushed. I had put Lidocaine on her skin so that it wouldn't hurt when she gets poked with the needle. Despite the cream, sometimes it hurts, and sometimes it doesn't. It didn't hurt this time.

Ma starts her radiation therapy on Monday, Dec. 1st. She goes 5 days a week for 7 weeks. The sessions are only about 15 minutes long.   

Consult with Dr. Shank

We saw Ma's radiation oncologist today, Dr. Shank. She thinks Ma can start radiation treatments even though her wound is not completely healed. I think we should wait. We'll see her surgeon again next Wednesday. Ma will also return to Dr. Shank's office that day for prep work. It'll take another week to get everything ready, so she won't start treatments right away. Maybe her wound will be almost completely healed by then.

Tumor Markers

Ma had a blood test done the other day to check for tumor markers -- CA 15-3 and CEA. Her CA 15-3 is in the normal range. But her CEA is high -- 5.1. Normal is under 2.5. That could be a sign that her cancer is returning or has metastasized.

We have an appointment on Tuesday with the radiation oncologist. Pa will show her the test results. But I'd rather see Dr. Irwin, Ma's regular oncologist. According to this, Dr. Irwin may order additional tests such as a chest x-ray and CT scan. Maybe I'll stop by his office on Tuesday after seeing the radiation oncologist. He's in the same building.

At least the numbers are nowhere as high as in this study with CEAs of 15+ and 25+. Maybe Ma's CEA just needs to be monitored more often to see if it's heading up or down.

Wound is Smaller

Ma had a follow-up yesterday with her surgeon, Dr. Cogen. Her wound is getting smaller. Dr. Cogen told Pa to change the gauze in her wound twice a day instead of just once a day. Apparently that will make it heal faster.

Dr. Cogen hasn't had a chance to talk to the radiation oncologist about when Ma can start her radiation. Personally I'd rather wait till she's completely healed. Ma has another follow-up in two weeks.

No More Snoring

Ma doesn't snore anymore. Okay, that's not true. She used to snore so loudly. Not it's just light snoring. What changed? I think it's the hospital bed she sleeps in. She leaves the head elevated slightly, and that probably clears her airway. Just a tip for those of you who snore loudly -- elevate your head.

Going to Church

Nothing's been going on lately. The only thing new is I found out Ma has been going to church on Sundays. She hadn't been going because she thought she'd have a hard time. But she does fine as long as she stays in her wheelchair.

Shopping

Even though Ma has lost a lot of weight, her belly is huge due to gas. Physical inactivity doesn't help. Her pants are all too tight. So we went to Mervyns to buy some clothes. I wheeled her around in a wheelchair.Thank goodness they have dressing rooms for the handicapped. She tried on several pairs of pants and a few shirts. Trying on all those clothes must have tired her out because she slept for 3.5 hours afterward. At least she had some physical activity. She even agreed to walk from the store entrance back to the car. Usually she would insist on using the wheelchair even for very short distances.

Wound Healing Slowly

Ma saw her surgeon today. The abscess in her breast is healing, but it's going slowly due to her diabetes. Dr. Cogen wants Ma to hold off on her radiation. She will consult with the radiation oncologist as to when Ma can start. I'd prefer to wait till she's completely healed. She has another follow-up with Dr. Cogen in two weeks.

Orchids, Orchids Everywhere

Food isn't the only thing friends have been giving Ma in abundance. She also has been getting lots of flowers, especially orchids. She got two last week alone. We're running out of space for them!

Speaking of food, Joy sent fruits & cheese from Harry & David. And a friend stopped by this afternoon with a pot of turkey soup. Yum!

Trip to Airport

Kit flew back to Switzerland today. Ma went with us the airport to see Kit off. As usual, she didn't want to walk, so we had to use the wheelchair while at the terminal. At least we're getting our money's worth out of it. She did walk around the house when we got home. And she prepared herself a snack instead of just sitting down and waiting for someone to serve her. I told her she should do that more often so that she's a bit more active.

Trip to Oakdale

Ma, Pa, Kit & I drove to Oakdale to visit a family friend who was injured in a head-on collision. She's had four surgeries and is in rehab now, but is still unable to walk. Today is her birthday, so we brought presents and a cake.

Oakdale is two hours away. I figured the trip wouldn't be too tiring for Ma since she'll just be sitting in the car (vs. sitting at home). The problem was she refused to walk once we got to Oakdale and had to be wheeled around in her wheelchair. I don't think she walked at all the whole afternoon.

Port Flush

We went to the Cancer Center today to have Ma's port flushed. They don't usually remove the port-a-cath right after the chemo treatments are done in case the cancer comes back and additional chemo is needed. But the port has to be flushed with Heparin every 4-6 weeks to keep it from clogging.

After the port flush, we saw Dr. Irwin, Ma's oncologist, for a follow-up visit. He thinks Ma is doing well although he didn't know about the infection in her breast. Ma had a blood test done yesterday, and the numbers look okay. One thing we forgot to have tested are her tumor markers. Ma will have another blood test done in a couple of weeks to make sure she's tested for tumor markers.

Happy Birthday, Ma

Today is Ma's actual birthday. She started off the day by going to Mass for the first time since she got sick. They sang happy birthday to her in church. Then we attended the funeral of a family friend. The reception was at a Chinese buffet. That was Ma's birthday meal. :)

For dinner, the neighbors across the street cooked several dishes for Ma -- chicken with rosemary, rice, veggies, cornbread, and candied yam. They were all good. Oh, and cake! They baked a small cake.

Pearly Shells

More Party Photos

Ma & Pa with friend Emily Delane. Another friend Auring gave Ma her wig and put on her make-up.
Ma & Pa with friend Let Cueva.


Tita Belen, Ma, Let Cueva & Tito Pepe

(L-R) Foreground: Dorothy & Melissa. Background: Lizza Mae (Ate Beth's daughter), Kit, Maia with baby, her husband Raymond Siu and Raymond Mendoza.

Fr. Rene & Ryan

Richard's fiancée Tricia (Trisha?) and Richard


Tita Belen, Ate Eva (background), Ma, Tito Pepe and Ate Vicky.

Ma & Pa with friends (from left) Litz Quintong, Emily Delane and Bien Quintong.

Long line at the buffet. There's lechon hidden somewhere in there.

Kuya George, Dorothy & Melissa with Ma.

Ma cutting the cake with help from Emily.

Guest Jenny dancing the Hawaiian Wedding Song for Ma & Pa.

They really did dance the hula. I heard they practiced for days.

Pa joined in on the dancing.

Party Time!

Well, I think the party was a success. So many friends and relatives pitched in to help before, during and after the party. Other friends provided entertainment without being asked. I couldn't have done it without them. Thank you so much to everyone.

I don't know how many guests showed up, but the only thing we ran out of was dessert. Friends of Ma made extra dessert to supplement the ones I ordered, and we still ran out. We had leftovers of most of the dishes. Because they thought we might run out of food, Pa ordered pansit malabon, and Ate Vicky brought some Arroz Valenciana.

I didn't have time to take many photos, so I'll have to get copies from other relatives who did. In the meantime, there's this:


That's the parish priest second from the left.

More photos tomorrow.

Missing Lashes

I just noticed today that Ma doesn't have any eyelashes left. Most of her eyebrows are also gone. It seems that with chemo, patients don't lose their eyelashes & eyebrows till after the chemo treatments are gone.

One of Ma's friends bought her a wig. I think she plans on wearing it tomorrow to the party. The friend will also help her with make-up.

Kit's Here

Kit arrived today. She brought lots of cookies and crackers and Ma's favorite -- roasted chestnuts. Ma's happy.

Radiation Oncologist

Ma had her first appointment today with her radiation oncologist, Dr. Shank. She went over what Ma can expect when she undergoes radiation. She also agreed that we should hold off on radiation till the abscess in Ma's breast stops draining. I think it's pretty much dried up. I'd prefer that we wait till it's completely healed. We have a follow-up appointment with her surgeon, Dr. Cogen, in two weeks and will assess the situation at that time. It's possible that Ma can proceed with radiation by the end of the month.

I've lost track of how many guests are coming to the party. It's definitely over 100. I hope I ordered enough food.

Not MRSA

We saw Ma's surgeon, Dr. Cogen, today for a follow-up visit. She thinks Ma's wound is healing nicely.

The lab screwed up and will have to redo Ma's culture test. But it did show that her infection is not MRSA, so that's good.

Afterwards we went to the dentist to see why Ma's gum is so sore. Dr. Mora didn't see anything obviously wrong. All of Ma's teeth are equally sensitive. If it gets worse, she may need a root canal and/or crown. We'll have to clear it with the oncologist first.

Painful Gums

Poor Ma. Her gums have been painful lately. I don't know what's causing it. She's been applying lidocaine to them, but they still hurt. So I gave her Tylenol, and the pain went away. She now knows to take painkillers when her mouth is in pain.

Kit is coming. I didn't think she would come, but she emailed me last week saying she's arriving on Thursday. She's staying for 9 days.

Fr. Rene drove up today from LA. I didn't think to even invite him, but here he is. He's staying till Sunday.

Although not everyone has RSVP'd yet for the party, my guest count is already at 98. I'm expecting 120.

A Houseful of Guests

When I arrived at the house, there were 10 guests visiting Ma. Maring (Kuya Dan's wife) and her daughter Cherry had been wanting to visit Ma. They drove up from LA along with Cherry's husband and kids and Cherry's brother and his wife. Bitoy and Beta came along, too. Ma enjoys having company, so I'm sure she was glad they visited. She gets tired easily though and had to lie down after a while. Everyone left soon after.

Ma's open wound was draining a lot yesterday. It looks like it stopped draining today. I stopped at a medical supply store for some gauze. That stuff is expensive. I also got some draw sheets so that her bedding doesn't get stained from the fluid draining, but she doesn't need it now.

Infected Wound

Ma's lumpectomy site is infected. Dr. Cogen said it's unusual for a surgical site to get infected so many months after the surgery. She's having tests done to see what's causing the infection. I hope it's not MRSA. In the meantime, Pa has already started Ma on antibiotics.

Dr. Cogen had to clean up Ma's wound. She injected the site with painkillers and sliced it open. Lots of fluid drained out. There's a cavity inside Ma's breast where the lumpectomy was done. Dr. Cogen dug her fingers in there and cleaned it out. It was gross, and I watched the whole thing.

She's treating it as an open wound and proceeded to pack the wound. I've heard of the terms before but never knew what they meant. Now I know. The incision wasn't stitched up, and you can stick your fingers into the cavity in the breast. That's an open wound. Packing the wound means you literally stuff wet gauze into the cavity. Ewww! It didn't hurt though. The gauze is there to absorb fluids. The idea is that the wound will heal from the inside out with the skin being the last to heal. I'm not sure if Ma will even need stitches. Pa will have to repack the wound twice a day. Ma has a follow-up on Tuesday.

It could take several weeks for the wound to heal. In the meantime, she can't start her radiation. Apparently, radiation will keep her wound from healing. I hope her diabetes doesn't complicate matters.

Lots of Goodies

Cousin Bitoy just got back from the Philippines and brought back lots of food from Tito Vesting and Tita Med. There were two kinds of suman, cookies, turon de casoy, hopia and duman! Ma's happy. Too bad her blood sugar is so high. It was over 400 tonight.

Grace, please pass on our thanks to Tita Med and Tito Vesting.

More Origami

There's nothing new to report regarding Ma. She's neither better nor worse. Her appetite is good, but her blood sugar is almost always too high. This morning she weighed 115 lbs. Pa has been draining one liter of fluid from her lung every morning.

Pa managed to get a lot of origami fish done. I don't know how many Ma made, but she had three guests yesterday who decided to join in on the fun. I tried to make a seahorse, but it's too difficult. I'm making turtles (honu) and starfish instead. They'll be used as wall decorations at Ma's birthday party. It's Hawaiian-themed; that's why we're doing sea creatures.

Big Fish

I spent the whole day yesterday working on the invitations and mailed them out today. If you don't get one soon, you're not invited. :)

(Kuya Jess, I didn't send you one. But let me know if you want to come).

Now I have to work on the catering. I showed Ma the menu choices, and she helped pick out the dishes. She asked about dinuguan, but it's not listed as a choice.

I want some origami fish to decorate the hall and thought it would be a good idea to have Ma make them. I don't know if she's bored now that she's no longer working. Doing some origami gives her something to do. She can follow along if you do the origami with her, but reading the directions and illustrations makes her very confused. I don't think it's chemo-related though. Even Pa couldn't follow the directions. And it's supposed to be a simple fish! Maybe I should do the more complicated seahorses myself.

Big H

Not much to report except that Ma's hemorrhoids are really bothering her. She has some pretty big ones, and they seem to be permanent.

Ma's first consultation with the radiation oncologist isn't till Oct. 8. Her radiation treatments will probably start a week or so after that. This means she won't have started her radiation treatments before the party on Oct. 11. That's good because radiation will make her fatigued.

Party's On

Chemo #4 Day 20

I was able to book a hall at a nearby retirement home. The party is on October 11, less than 3 weeks away. I've started working on the invitations and will try to send them out by the end of the week.

I went ahead and told Ma about the party. At first she said she's too weak. When I reminded her she won't have to do anything except sit in her wheelchair, she stopped protesting. Then she said I'm unemployed and have no money. I told her the EDD is financing the party. :)

So the party's on. I'll be calling each and everyone of you, and force you to volunteer to help.

Oh, and it's Hawaiian theme. Wear your loudest Hawaiian shirts.

Should We Have a Party?

Chemo #4 Day 19

Ma's birthday is coming up -- Oct. 15. I think we should throw a party -- either Sat, Oct. 11 or Sun, Oct. 12. I'll see if I can rent a hall. But I'll need help with setup and with cleanup after the party.

Can you help? Oh, good. I knew I could count on you!

We don't know yet when Ma will start her radiation treatments. She has an appointment with the radiation oncologist either Oct. 1 or 8. I'm hoping she'll be feeling a lot stronger when her birthday comes around.

Gaining Weight

Chemo #4 Day 16

At the doctor's office yesterday, Ma's weight registered as 122 lbs. At home it's more like 118. That's up from 111 at the beginning of the month. I'm sure some of the weight gain is just fluid retention, but surely not all of it. Also, her appetite is very good. She's been eating a lot.

Follow-up Visit

Chemo #4 Day 15

My cousins Nancy, Lorna & Maggie and their mother Tita Daling (Pa's 2nd cousin) drove up to visit Ma. We went to Andrea Foods in Vallejo for lunch. My classmate Joji saw me while I was in line. We got tons of food, but she charged only $40. Plus she gave us extras like desserts and drinks. The food was good, and we all ate too much. Ma seemed energized with all the food and attention.

Later that afternoon, we went to the oncologist for a follow-up visit. I told Dr. Irwin that Ma didn't have her usual side effects after the last round of chemo -- no mouth sores, no leg pain, and no loss of appetite. It's almost like she didn't get any chemo at all. Her platelet count is up from when she was in the hospital last week.

The next step is to see the radiation oncologist next week. We're still waiting to hear from the gynecologist about Ma's biopsy results.

Ditto

Chemo #4 Day 13

For today's news, see yesterday's post. Yeah, nothing new today. Ma drank slightly more, maybe 1.4 liters. But over 1 liter was drained from her lung today.

Drink More Water

Chemo #4 Day 12

No change in Ma. She needs to drink put effort into drinking more water though. So far she's had only 1.25 liters of water, and she's already asleep. Pa drains anywhere from .5 to >1 liter of water from her lung daily. At this rate she's going to get dehydrated again.

Food from Goldilocks

Chemo #4 Day 10

I got lunch for Ma at Goldilocks and went a little overboard. I got the following: fresh lumpia,
pork inihaw, pinakbet, sotanghon, chicharon bulaklak, daing, sago't gulaman, and taho. Not bad for
$40. We managed to eat them all in two meals except for a little daing and one taho.

Ma is feeling better and stronger today. She was able to walk around the house. However, she's out of breath at the end of it, and the walk is only 70 feet long! Her voice is also hoarse. I don't know if she's caught a cold or what.

I asked Pa to check Ma's lung because she's so out of breath. He decided to drain her lung again tonight and got 550 ml of fluid. This morning he got 650 ml.

Visit with Gynecologist

Chemo #4 Day 9

Ma saw a gynecologist today for the first time in 31 years. Dr. Tracy Phillips thinks the vaginal bleeding is due to Ma's low platelet count. But just in case, she also did a biopsy to check for uterine cancer. It will take a week to get the results.

Ma is still feeling weak. She lies down all the time because she feels dizzy, but we think she feels dizzy because she's lying down all the time.

Ma's Home

Chemo #4 Day 8

Ma was sent home today. I'm not clear on why she was even admitted to the hospital. The gynecologist never did show up. Ma will see a different gynecologist on an outpatient basis.

Pa slept in Ma's room last night. I didn't think he'd be able to because Ma had a roommate, but the nurses managed to squeeze in a recliner for him.

Ma is still feeling weak. She didn't do any walking around the house today, and she spent most of the day sleeping. Her appetite is still good though, and she's eating a lot.

Bleeding

Chemo #4 Day 7

Pa took Ma to the emergency room this morning because she had vaginal bleeding. Her hemorrhoids have also been bleeding. Blood tests show a low platelet count, but they're holding off on giving her platelets till she really needs it.

More troublesome is the ultrasound. They found something in her vaginal canal. The hospital doesn't have a resident gynecologist, so someone has been called in to see Ma. The doctor didn't come today though.

In the meantime, Ma was admitted to the hospital. The hospital is full, and Ma has to share a room. Bummer.

Oh, and I found out today that Ma hasn't had a gynecological exam since she lived in Michigan. She left MI in 1982.

Lip Sores

Chemo #4 Day 6

Ma still doesn't have leg pain or canker sores. I'm amazed. She does have sores on her lips, but the pain doesn't stop her from eating. Her appetite is still good. She was complaining of feeling weak yesterday though. And her blood sugar is too high.

So Far, So Good

Chemo #4 Day 5

Usually by now, Ma would have leg pain and mouth sores. But she hasn't had either one yet. She's been using her special mouthwash every day though, so maybe that's keeping the mouth sores at bay. I hope I haven't jinxed it by even mentioning the absence of side effects so far.

She does have one unpleasant side effect. Yesterday she insisted on taking an enema. That was a bad, bad thing for her to do. Poor Pa had to do the clean-up. Now she's taking Lomotil.

Need a Commode

Chemo #4 Day 2

Ma was supposed to receive a commode at the same time her hospital bed was delivered in July. For some reason, she never got the commode. I won't go into the gross details, but she needs one now. I will say that she's being good about drinking a lot of water. I told Pa to follow up on the commode tomorrow. He'd been told before that it'll take 4-6 weeks. That doesn't make sense. I'm hoping that if he calls tomorrow morning, that one can be delivered by late afternoon.

Ma wanted to go out for dim sum today, but I told her it wasn't a good idea because she just had chemo. So I got her some items to go -- shrimp siu mai, chives dumplings, shrimps wrapped in tofu, another shrimp dish wrapped in noodles (I think I got too much shrimp) and sesame balls. Ma tried one of each. I think she likes having a variety. Next time I'll get something that doesn't have shrimp.

Last Chemo

Chemo #4 Day 1

Ma had what I hope is her very last chemo ever. We arrived at 9am and were at the infusion center till 3:30pm. They serve the patients lunch. However, they always serve the same menu -- soup, three dry-looking meatballs (no sauce), rice, sliced steamed carrots, a roll and juice. Ma eats the soup; the rest she won't touch. Pa and I went across the street to the Filipino restaurant and got her bistig and monggo soup. I like having tiny fish eyes staring at me while I'm eating, so I ordered dilis for myself. Those things sure are salty.

Ma is doing a good job today of drinking lots of water. She's on her 5th bottle (500 ml each). It helps that it's warm today.

Prunes

Not much to report today except that Ma asked for prunes. She has her last chemo tomorrow. The chemo gives her diarrhea, so she won't need those prunes for a while.

Lunch at Andrea's

We went out today to Andrea Foods in Vallejo (my classmate Joji's restaurant). We had the usual lechon (Andrea's specialty) plus ukoy and fresh lumpia. I didn't let Joji know we were there until we were almost done eating. Nevertheless, she sent us home with some food -- kalabasa and four kinds of desserts.

After lunch we got more balut for Ma. Then we went back to Andrea's because she forgot that she wanted dinuguan. Afterwards we went to Red Ribbon for sago at gulaman for Isa. As long as we were in the area, we also got chicken skin chicharon and siopao (chicken and pork).

Tito Lum cooked the balut for Ma. He said he used to sell balut when he was in college. He'd buy 1000 eggs and cook them in a barrel. Then the neighborhood kids would sell them for him at 3 for 1 peso. Half of that was his profit. The eggs would be gone in 3 days.

Later that day, Ma had two visitors. I think they were people she met at church. After they left, she fell asleep in her rocking chair. I finally woke her up at 8pm for dinner. Her appetite is very good, but she's down to 112 lbs.

High Blood Sugar

Ma's blood sugar has been pretty high lately, over 200. Pa has been giving Ma insulin every morning (she didn't need insulin before) and doubling her glipizide. Ideally, her blood sugar should be checked before every meal, but Pa has been checking it only once a day.

If Ma walked around the house a little bit more often, I think it would help lower her blood sugar. But she's so sedentary and always has lots of excuses as to why she can't move around more often.

Oh well, at least she's eating a lot.

Wasted Trip

We went to Dr. Khan today to have Ma's catheter changed. But Dr. Khan said there was no need unless it causes an infection. Pa was misinformed by Dr. Majid at Doctor's Medical. (Dr. Khan is with Summit/Alta Bates).

Ma didn't think she could walk that far, so we used the wheelchair when we went for her appointment. It's very easy to maneuver and doesn't take much room in the elevator.

Pa drained just over one liter of fluid from Ma's lung today.

Over One Liter of Fluid

Chemo #3 Day 21

Pa drained Ma's lung just once yesterday. He got 950ml. The bottle holds 1000ml. Today he got 700 in the morning and 600 in the evening. That's 1300ml in just one day.

Tomorrow Ma is going to the doctor to have her Pleurx catheter changed. Apparently it's supposed to be changed every month or so. It's been closer to two months for her.

Ma's appetite has been pretty good. She's been wanting some balut though, so Pa got her a dozen or so the other day. She had two visitors today who brought fresh vegetables from their garden. Another friend dropped off some arroz caldo for her.

I forgot to mention that Ate Eva, Raymond and their guest (Raymond's cousin, I think) came to visit on Sunday. They brought lots of Filipino goodies to eat.

Increased Pleural Effusion

Chemo #3 Day 19

Pa usually drains about 500 ml of fluid from Ma's lung every morning. For the past week, he's been having to drain her twice a day for an average of 900 ml/day. Her oncologist had hoped that the chemo would help dry up her effusion, but it doesn't seem to have had any effect. I don't know if this is something to worry about.

Chemo Postponed

Chemo #3 Day 17

Ma had a follow-up appointment today with her oncologist, Dr. Irwin. He suggested, and we agreed, that instead of Ma having her next chemo next Wednesday, that we postpone it for another week. That'll give her more time to recover from her recent hospital stay and to enjoy feeling better a little bit longer. She had actually gained several pounds since coming home from the hospital just three days ago. How much of that weight gain is due to fluid retention, I don't know. But Ma said her appetite is back. Food still doesn't have much flavor though.

Pa followed up on the physical therapy and found out that Ma is not eligible. The problem is due to the catheter in the chest. They don't want to be liable if anything happens during physical therapy. I told Ma to just keep walking and move her legs even while sitting down. She's out of breath walking just 100 feet, then doesn't want to try anymore. She almost fell again this afternoon.

I didn't know that the hospital left the needle in Ma's port. Not sure why they did that when her chemo wouldn't have been for at least another week. Now that it's been postponed, it made even less sense to leave the needle in. So we stopped at the infusion center to have it taken out.

We stopped at the mall on the way home just for a change of scene and to have Ma's glasses adjusted. I pushed Ma all around the mall in her new wheelchair. It was easy to push her around, and I love how lightweight it is.

A Fall

Chemo #3 Day 15

Ma fell tonight in the bathroom. She said her walker got a bit too far from her, and she fell slowly but didn't seem to have hurt herself. I heard the loud clatter as she was falling. She couldn't get up by herself though.

One improvements is that, unlike yesterday, she can now get up from her rocker by herself.

On a sad note, Isa had her cat Tiger put to sleep this afternoon. The poor kitty had been sick with liver cancer and was in pain. Isa had been injecting her with painkillers, but it was time to put her down.

Back Home

Chemo #3 Day 14

Ma was released this morning. I was bad and didn't get to the hospital early enough. Pa had to leave the office to take Ma home. It took over two hours for her to get discharged.

Ma's leg muscles are too weak, and she can't get up by herself from her rocking chair. She can get up from the dining room chair though. And she can walk to the bathroom with her walker. I didn't make her walk through the living room for exercise. Ma said the hospital will arrange for in-home physical therapy for her.

Low Hemoglobin

Chemo #3 Day 13

Ma was dehydrated when she was admitted on Saturday so her blood test showed an inaccurate number. Once she was rehydrated, her hemoglobin count turned out to be low. She's receiving two units of blood. She may be discharged tomorrow if she feels better. Before she got the blood, she was complaining about feeling very weak. Sitting up made her feel bad. A couple of hours after she started getting blood, she felt much better.

The nurse gave Ma Megace this afternoon to stimulate her appetite. It seems to have helped. She ate very little at lunch but ate quite a bit more at dinner. She said the food also tasted better.

Her white blood cell count is down to 19, much better than the 33 on Saturday. Normal is closer to 10. Ma's oncologist said the high number is likely due to the Neulasta.

I hope the nurse doesn't forget to give her Lomotil. She needs it again.

She Does Have an Infection

Chemo #3 Day 12

Ma's still in the hospital. No word on whether she can go home tomorrow. Pa said she has a urinary infection, but the nurse said it's not a UTI, so I'm not sure what she has. She's on Zosyn and Vancomycin.

Ma got annoyed with me because I keep telling her to go for a walk. She finally went, after many excuses, but the walk lasted less than 3 minutes. She decided she was tired after going barely halfway down the short hall.

Ma still has mouth sores, but they don't hurt anymore when she eats. She can't taste her food though and didn't eat much for dinner.

Back in the Hospital

Chemo #3 Day 11

Ma has been feeling weak and had been asking Pa since yesterday to take her to the emergency room. She insisted again this morning, and Pa finally took her. Her white blood cell count (WBC) was 33.2. Normal range is 10.8 max. The doctor thinks Ma has a bad infection and decided to admit her.

It took several hours to get Ma to a room. She was still in the emergency room when I arrived even though I took my time getting to the hospital. She ended up in her old room on the telemetry floor. That's the floor where the patients are put on a wireless device that monitors their heart.

Dr. Reis, one of the pulmunologists, stopped by soon after Ma arrived in her room. He thinks there's nothing wrong with her. The weakness she feels is a side effect of the chemo. The high WBC could be due to the Neulasta shot she got on August 7, nine days ago. Also, she has no fever. She'll continue her antibiotic (Zosyn), and if she does well tomorrow, she can go home on Monday.

At the emergency room, Ma's nurse knew how to access her port, so he didn't have to use her arm to give her IV. They still used her arm to draw blood though. When I arrived in the emergency room, her antibiotic drip was done, but she was not given Heparin to ensure her port stays clear, nor was she on a saline drip to keep her line open (TKO). I insisted that Pa ask her nurse to put her on saline TKO, and the nurse had no problem doing so.

Kuya Jess, Helen, and their youngest son Jerel drove up from LA to visit Ma. That was really nice of them. Of course they expected to visit her at the house, not at the hospital. They arrived in the late afternoon with Kuya Richard and brought a box of mamons. Yum! I forgot to take photos, darn it. By the way, Monday is Kuya Jess' birthday. He turns 30 x 2. Happy birthday!

Ma had other visitors. One of the nurses upstairs was expecting Ma on her floor before they decided to change her room. She came down anyway to see how Ma's doing. The security guard downstairs, who's a patient of Pa's, also stopped by to say hello.

I left the hospital around 8:30pm after Pa came back from the house. He is staying overnight in Ma's room. There's a second bed in the room that he can use.

Cold Sores Almost Healed

Chemo #3 Day 9

Ma put antibiotic ointment on the cold sores on her lips yesterday, and the sores are almost completely healed. Amazing. Her mouth sores are still there though.

She still has leg pain. She took Darvocet for it, but I told her to try Tylenol next time.

Ma says she's losing her appetite, but at least she's making an effort to eat. She says she can't taste the lasagna her friend brought over but insists she can taste the almost flavorless protein powder I added to her milk.

Cold Sore

Chemo #3 Day 8

I didn't see Ma today, but she said she has a sore on her lip. That's a new development and something she hasn't had before.

Ice chips help with the pain in her mouth, and she was able to eat solid food today.

Both her ankles hurt, and she needed Darvocet for the pain.

Painful Mouth Sores

Chemo #3 Day 7

Ma's mouth sores are really bothering her. The lidocaine provides a little relief but not enough. She asked for soup tonight because she has difficulty chewing. The cocktail prescribed for her (Nystatin, lidocaine, Benadryl & Maalox) is not a miracle drug and doesn't make the sores heal.

A quick internet search said to try something called CankerMelts. It's a disc made from licorice extract that you put directly on the sore. I bought some tonight along with L-Lysine tablets. Ma wants to wait till tomorrow to try them.

At least she didn't get much pain in her leg today. Her ankle hurt for a while, but it went away on its own. No Darvocet required.

Pain is Right on Schedule

Chemo #3 Day 5

Ma has muscle pain in her left leg. It started yesterday, as I expected. She's taking Darvocet for the pain.

Her mouth sores are back. She used lidocaine before eating to take away the pain. She also rinses with the cocktail of Nystatin, lidocaine, Benadryl, and Maalox that Dr. Irwin prescribed a couple of weeks ago.

I gave Ma a printout on cystitis. If she's not going to drink enough water, she should at least know what symptoms to expect when her bladder gets affected. Blood in the urine and painful urination just don't sound good to me.

I ordered the lightweight wheelchair. It's about 8 lbs. lighter than the one Tita Belen has. The main difference is that Tita Belen's chair has 12" wheels in the back, nice for rough terrain. But the one Ma has is fine for light use. I wanted something really light. It's about 19 lbs. with the footrests and 15 lbs. without. The back folds down in addition to the seat, so it doesn't take up that much room in the trunk. Ate Eva lent me Kuya Rey's wheelchair (probably from Kaiser), but it's about 43 lbs. with the footrests and 35 lbs. without. Plus it's too bulky.

Here's Ma in the wheelchair.


She also likes the rocking chair we got last week at Costco.

Water

Chemo #3 Day 2

It is impossible to get Ma to drink 4 bottles of water a day.

Chemo Almost Canceled

Chemo #3 Day 1

Ma's chemo almost got canceled today. She's supposed to have a blood test done two days before her chemo. Because she just had one done last Wednesday, we thought that was good enough. It's not. The cancer center wants more recent numbers for her white blood cell and platelet counts. So Ma had her blood drawn yesterday afternoon, but it could take 24 hours to get the results back. The cancer center had actually called this morning to cancel her chemo today, but they called back half an hour later to say the test results came in this morning after all.

It was almost noon when we arrived at the cancer center. First thing they did was give Ma a warm blanket fresh out of the oven. Then they gave her lunch. But Ma doesn't like their lunch, and she ate before leaving the house. She had their soup though.

The nurse gave Ma the usual pre-meds -- Benadryl, Pepcid, Decadron and Zofran. It usually takes a while for the pharmacy to have the meds ready. As a result, the Taxotere wasn't started till 1:30pm. They started it off slowly and checked her vitals every 5 minutes to make sure she doesn't have any bad reactions. After 20 minutes, they bumped up the drip to the normal rate. It took 1.5 hours to finish the Taxotere. The Cytoxan was started around 3:10pm and also took 1.5 hours. We were out of there by 5pm.

I tried an experiment today and had Ma chew on ice while getting her chemo. Some say it might keep her from getting mouth sores. We'll see.

Ma's red blood cell count is too low, so Pa has started her on iron pills. Those pills cause constipation. We're hoping it'll help counteract Ma's diarrhea.

Here's Ma getting her Taxotere.













This is the infusion room at the cancer center after almost all the patients had left. There are 6 recliners. You can see Ma's blanket in the lower left. There's another recliner behind the curtain at the end. As you can see, it's a bit cramped. Thank goodness there usually aren't many guests accompanying the patients. Today I seemed to be the only one, and I was seated beside Ma.

Drink More Water

Chemo #2 Day 21

Ma is having her third chemo tomorrow. One of the drugs can cause bladder problems, so she'll have to drink at least four 16 oz. bottles of water a day for several days to flush out the drug. She's been drinking only 2 bottles a day. I tried to make her drink three, but it seems the best she can manage is 2.5 bottles.

Food, Food, and More Food

Chemo #2 Day 19

Ma felt well enough to go out to lunch, so we went to Andrea's in Vallejo. The restaurant is co-owned by my high school classmate Joji. Joji had visited Ma when she was still in the hospital and brought lots of food.

I was hoping to pay for our meal before Joji saw us, but no such luck. She let me pay for the dinuguan, puto, daing na bangus and rice, but she wouldn't let me pay for the double order of lechon. Then she brought over ampalaya, pinakbet (kalabasa), a plate of desserts (banana-Q, turon, kariyoka), and melon coolers. Ma ate a lot of food, but we still had lots of leftovers. She really liked the pinakbet, so Joji gave us more to go. She also wouldn't let me pay for the okoy that Ma wanted for later.

Afterwards we stopped at Seafood City for more food. Ma was able to walk a short distance inside the mall although she spent most of the time sitting while we shopped for goodies.

In the afternoon, friends stopped by to visit. They brought nectarines, giant peaches and corn. Another friend stopped by with paksiw na lechon and more corn. And then another friend stopped by with arroz caldo.

Ma was so full from her lunch that she didn't eat much dinner. If she keeps eating as much as she did today, maybe she can put on a couple of pounds by her next chemo on Wednesday.

A Trip to Costco

Chemo #2 Day 17

Tita Belen, Tito Pepe, and Ate Vicky stopped by today, just in time for lunch. They brought dim sum and bangus. We also had pusit, bistig and monggo soup. Ate Vicky commented that Ma ate a lot. They stayed for about 2 hours.

Afterwards we went to the oncologist (Dr. Irwin) for Ma's follow-up appointment. Her triglycerides and uric acid levels are way too high. Pa will give her the appropriate medications. She must be taking about 20 pills a day now. Most of those she was already taking before she got cancer.

I asked Dr. Irwin if I can give Ma acidophilus for her diarrhea/soft stools. He said it was okay, so I got her a bottle of pills today. Acidophilus is the stuff you find in yogurt. It restores the good bacteria in your stomach.

After the appointment, we went to Costco to find a comfortable chair for Ma. We had borrowed Tita Belen's wheelchair. It worked quite well, and Ma found it comfortable. At Costco, Ma didn't like the recliner, but she liked the rocking chair. When Pa tried to pay for it, he discovered he didn't bring his checkbook. They wouldn't take my check. We didn't have enough cash. Neither one of us had a debit card, and they don't take credit cards. Fortunately we ran into a patient of Pa's, Rafael, and he kindly lent us $100. I wrote him a check to cover it. Whew! Pa will borrow a truck from friends and pick up the rocking chair tomorrow morning.

After we paid for our other purchases at Costco, we followed Rafael to his house because he had some peaches he wanted to give us. He has a big house in the hills of El Cerrito. His garden has lots of fruit trees. He also has a pet hen that lays lots of eggs. Yep, it was a free-range chicken. I even got to pet it without getting pecked. We went home with peaches and lemons from Rafael's trees and brown eggs from his chicken.

Another Two Pounds Lost

Chemo #2 Day 16

Ma seems a lot better. Her appetite is good, and she's not sleeping all the time. She even watered her orchids today. However, she has lost more weight and is down to 111 lbs. Every time I try to have her eat or drink something with protein powder, she always has an excuse. She's the same way when I ask her to walk more often around the house even though it only takes her a couple of minutes.

Should I Get a Wheelchair?

Chemo #2 Day 14

Didn't visit Ma today, but she says she ate a lot of small meals, including a whole corn-on-a-cob. Her appetite is good. Her doctor prescribed Megace to help with her appetite, but she's taken it only once. That was two days ago. It helped, but she said it made her food taste mediciney (is that a word?).

I want to get Ma a comfortable chair for use at home -- either a recliner or a rocking chair. She wants to try it out first before purchasing, but we don't think she can manage the walk from the Costco entrance to the cashier area. So now I'm thinking of getting her a wheelchair. Medicare will provide a chair, but I understand it's heavy (40 lbs.). I want to get a lightweight chair. This one has good reviews and is only 15 lbs.

I've added a poll to the right. Please vote. Can you recommend a wheelchair? Should I even get one?

More Alert

Chemo #2 Day 13

Ma seemed so much better today. I think it's simply because she didn't take Darvocet and therefore wasn't sleeping all the time. The catheter in her chest still gives her occasional pain. I told her to try Tylenol next time it hurts so that she's not so drowsy during the day. That'll also take away her excuse for not walking around the house more often.

Massage

Chemo #2 Day 12

Yeah, I know. I skipped a day.

We've switched Ma to eating several small meals a day. Her stomach seems to be handling it better. Her diarrhea is still bad though. I'm not sure if Ensure makes it worse. At the hospital, drinking Ensure guaranteed an immediate trip to the bathroom.

Ma's friend and hairdresser Auring came over. She did Ma's nails and massaged her legs and feet. Then she massaged her head. Ma really liked that part. Auring said she'll come over every other day to give Ma a massage. They also spent a lot of time chatting. Ma seemed to enjoy her visit. Auring is so nice. She's the one who brought lots of home-cooked food to the hospital including some fried bangus for me because I said I liked it.

More Drugs

Chemo #2 Day 10

Ma had a follow-up appointment today with her oncologist Dr. Irwin. I told him about the side effects she was having, and we went home with three prescriptions:

• A mouthwash cocktail of Lidocaine, Nystatin, Benadryl and Maalox for mouth sores
• Lomotil for diarrhea (stronger than Imodium)
• Megace to enhance appetite
  

Dr. Irwin told Ma she has to drink at least two bottles of Ensure a day. Maybe she'll listen to him. Each bottle is only 8 oz., and she can't even finish one.

Dr. Irwin will be on vacation when Ma has her next chemo, so he wants to see her again next Friday instead of waiting till he gets back. She'll have a blood test done before her next appointment.

On the way home, we got some food -- fried quail, pusit, lechon kawali and ginatan. Ma went straight to bed though.

When she got up after 6pm, she complained about not feeling well. Pa listened to her lung and decided to drain her through her catheter again. Only 250 ml came out though. She usually gets drained just once a day, and typically 500-700 ml of fluid comes out.

Soon after getting drained, Ma threw up. I'm not sure if the vomiting was due to her chemo or indigestion. She went back to bed afterwards. When I left the house after 9:30pm, she was still asleep and hadn't had dinner yet.

More Weight Loss

Chemo #2 Day 9

Ma's weight is down to 113. It was 120 when she left the hospital three weeks ago. Even though she's eating, it's just not enough. We keep telling her to eat more protein, but she prefers carbs. She can barely finish a small bottle of Ensure per day.

She still has pain but not due to the chemo. The catheter in her chest is what's giving her pain.

No more nausea. Diarrhea's still there. So are the mouth sores -- three of them, one under the tongue. No fever.

Body Pain

Chemo #2 Day 8

I didn't see Ma again today. But according to her,

• Her whole body was very painful. Tito Lum couldn't find her Darvocet, and they had to call Pa to come home and find it. The bottle is now well-marked.
• Pa relented and got her lidocaine gel for her mouth. I don't know if this is over-the-counter. The kind I wanted him to get is prescription-strength liquid xylocaine that you can mix equal parts with Maalox or Mylanta and swish around your mouth.
• She no longer gets nausea.
• Her appetite still isn't good, but she can manage small amounts of food.
  

I have to remember not to say "OK" to Ma on the phone. She equates "OK" with "goodbye" and hangs up on me every time, usually before I'm done talking to her. Pa and Tito Lum do the same thing. I don't get it.

Mouth Sores

Chemo #2 Day 7

I didn't see her today, but Ma said she doesnt have any appetite. Her mouth sores are also bothering her. Pa refuses to get her liquid lidocaine to swish around her mouth and relieve the pain.

Drowsy

Chemo #2 Day 6

Drowsiness is a side effect of Compazine (for nausea) and Darvocet (for pain). Ma took both today, so she spent most of the day sleeping. Her mouth sores are bothering her, but she was able to eat.

Lots of Side Effects

Chemo #2 Day 5

Ma slept most of the day today. But she experienced a lot of side effects.

• Mouth pain. It went away after rinsing with Biotene, a mouthwash for dry mouth.
• Slight fever in the morning. It was gone by afternoon.
• Leg pain & chest pain. Controlled by Darvocet.
• Headache. Controlled by Aleve.
  
• Nausea and vomiting. Controlled by Compazine.
• Diarrhea. Controlled by Imodium.

The nausea and vomiting happened this evening after dinner and didn't last long. She went to bed after taking Compazine, and it looks like she's feeling better now. She had been taking Zofran to control the nausea, but she's supposed to take it for only 3 days, and it's now the 4th day.

Leg Pain

Chemo #2 Day 4

The only new development today is some pain in Ma's lower thigh. She had similar pain after her first chemo. She took Darvocet this time, and it's enough to keep the pain under control.

Ma has been coughing occasionally. I'm guessing it's due to the pleural effusion.

Losing Appetite

Chemo #2 Day 3

Ma is starting to lose her appetite. She'll eat a few bites of food, then stop. She won't even force herself to drink a small bottle of Ensure.

One thing she has to do is drink 2-3 quarts of water a day for several days after each chemo treatment to flush the drugs out. I have to keep reminding her to drink. She drank less than 2 quarts of water today, but she did have some soup and some Ensure. I suppose those can be included in her fluid intake.

Another thing she needs to keep doing is light exercise. The extent of her exercise is to walk a loop from the kitchen to the living room to the front entry and back to the kitchen. Yes, it's a very short walk, but at least she's moving.

Add Another $273K

The hospital bill from Doctors Medical (DMC) is $273K. Add that to the $222K from Summit, and the total so far is $495K. Neither amount includes doctors' fees.

Of the $273K charged by DMC, $224K was disallowed. Only $49K was paid by insurance, and Pa has to pay about $800.

Neulasta Shot

Chemo #2 Day 2

Ma went back to the cancer center today to get a shot of Neulasta. While she was there, Pa and a nurse removed some of her old stitches. Apparently, most of them are not absorbable. Also, some of the incisions are infected.

Chemo Resumes

Chemo #2 Day 1

Ma resumed her chemo today. She had the usual stuff. Everything was given through her IV except for the Benadryl pill:

1. Saline IV
2. Benadryl for allergy to the chemo drugs
3. Pepcid for heartburn (side effect of chemo)
4. Decadron for nausea and allergy
5. Taxotere (chemo)
   
6. Cytoxan (chemo)
   

Ma has lost more weight (she's down to 117), so her meds had to be adjusted down, and we had to wait for the pharmacy to deliver the drugs. The Taxotere didn't get started till 11:25 and took 2 hours to infuse. The Cytoxan took maybe 1.5 hours. We were at the cancer center for 7 hours. This session actually took longer than the first one (6 hours).

I forgot to remind Ma to put some Lidocaine cream over her port. It hurt when the nurse inserted the needle.

The infusion center is rather small. It has two private rooms and 6 recliners. Only first-timers get a private room. Ma had to settle for a recliner. The recliners are very close together, maybe 2-2.5' apart. It's a bit cramped.

Ma has a little pus where her catheter enters her buddy. I don't know if I should be worried. Pa says it's starting to clear up.

Summary of Hospital Stay

For those of you who missed it and don't want to read a month's worth of posts, this is what happened during Ma's hospital stay.

1. Ma went to the emergency room with shortness of breath on June 1st. Her pleural effusion (fluid in the lung) had returned. She was admitted to the hospital for treatment.
2. The pulmonologist inserted a chest tube to drain her lung and did a pleurodesis to keep the pleural effusion from coming back.
3. Ma's lung collapsed. It was reinflated, but she was sedated and kept on a ventilator in the ICU for several days.
4. The pleurodesis did not work. Her lung kept producting fluid.
5. She was transferred to another hospital for surgery. The surgery was for a video-assisted pleurodesis. It didn't work. She had two large chest tubes draining her lung, and they kept draining a liter a day.
6. The surgeon did the same surgery a second time hoping it would work. It didn't.
7. The large chest tubes were removed and a smaller catheter inserted so that Ma can go home.
   
8. Ma went home on July 4th after 33 days in the hospital. Pa has to drain her chest through the catheter every day.
9. The consensus is that the fluid build-up is caused by the breast cancer, and the doctors hope that chemotherapy will make the pleural effusion stop.
10. Ma resumes her chemo tomorrow.

$222,228.60

That's what Summit says it cost for Ma's hospital stay. The figure doesn't include doctors' fees. It also doesn't include the stay at Doctors Medical Center. My guess is the final tally will be over $500K. Thank goodness for Medicare and supplemental insurance. Pa said he doesn't have to pay a deductible or even a co-pay.

Cancer vs. Cirrhosis

Ma has visited her oncologist (Dr. Irwin) and pulmonologist (Dr. Majid) back at Doctors Medical Center. In addition, Pa has consulted with a GI doctor at the same hospital. They all think the pleural effusion is due to the cancer, not the cirrhosis. The only treatment they can suggest is to continue with the chemo. Ma resumes her chemo on Wednesday, July 16.

Home on the 4th of July

Ma went home yesterday. Her catheter had to be drained twice. Although I believe she produces 2L of fluid a day, only 650 ml came out the first time she was drained and 500 ml the second time. Draining is a painful process for her despite the Darvocet. The pain is supposed to subside in a few days.

Kuya Richard and Ryan stopped by with pancit malabon. Ma couldn't resist eating some right away. She really should eat more protein though. Ensure & Boost & Glucerna drinks give her diarrhea. I got her some Glucerna bars, and those she can tolerate.

Some stats:

33 days in the hospital
2 hospital admissions
8 hospital rooms occupied
3 pleurodeses (none of them worked)
2 surgeries
7 chest incisions
11 days in ICU
5 days on ventilator
1 bed sore
12 lbs. lost

This will be my last post for a while. Thanks for reading.

Second Chest Tube Out

The Pleurx was installed yesterday. We asked the nurse to make sure Ma doesn't feel any pain from the procedure, and she didn't. Afterwards, the PA removed Ma's second chest tube. She felt some pain despite the morphine, but Darvocet took care of it.

This morning the nurses showed Pa how to drain Ma's catheter. They did it too early, before I arrived at the hospital, but I have a DVD and instruction manual on how to do it.

Ma is going home today. We've started packing and are just waiting for the discharge papers.

Pleurx Pleural Catheter

As I mentioned the previous night, Ma's fluid output wasn't as bad as last week's. However, that changed overnight. In the 12-hour period from 8pm-8am, 1100 ml of fluid was drained from her. She must have put out 2L yesterday.

Today she will have a Pleurx catheter installed in her so that she can go home. A nurse or PA (physician's assistant) will teach us how to drain the catheter. At the rate she's going, we may have to drain it twice a day. No official word yet on when she can go home, but maybe in a day or two.

One Month Anniversary

Ma was first admitted to the hospital on June 1st. Today is her one month anniversary. It's not a happy milestone, but the end is in sight. One of her chest tubes was taken out today. Good thing, too, because I had accidentally knocked over the canister that the tube drains into. Oops! The nurses reassured me they had all done the same thing at one time or another.

I had misgivings about the PA (physician's assistant) removing the tube instead of the surgeon, but she did it quickly and painlessly. I had asked her to give Ma morphine before the procedure, and she agreed to it. With just one tube left in her, Ma's pain should lessen.

With the other tube gone, the remaining tube has started draining more than usual. It's nothing compared to last week though. If the second tube is removed tomorrow, Ma could be discharged by Thursday. But don't listen to me. I had also predicted that Ma would be home before Kit arrived.

Ma's friend and hairdresser Auring and her husband visited two days in a row. Yesterday they brought lots of fresh fruits -- plums and apricots from their trees and two mangoes. Today they brought more plums plus some food they promised Ma - sinigang bangus, rice and eggplant. I told Auring I prefer my bangus fried, and she cooked that, too. :) Tonight Ma asked Pa to get her some fried quail from the Thai restaurant. All this food is interfering with my weight loss plans. And the nurses are probably wondering why Ma's blood sugar is so high.

Slowing Down

Not much happened yesterday. Ma had nausea in the morning, but Zofran and a nap took care of it. She managed to walk just once around the unit. In the afternoon she had more pain and took a long nap.

No surgeon stopped by to check on her. But the fluids draining out of her chest are definitely diminishing. After her first surgery, the fluids coming out of one chest tube slowed down, but the other just kept going and going. This time it looks like both chest tubes are slowing down.

The pulmonologist stopped by. He didn't really have much to say. I thought we'd be seeing a liver specialist while in the hospital, but it looks like that can wait till Ma is discharged.

In the meantime, a hospital bed for Ma has been delivered to the house. We just need to find some extra long bed sheets for it. Isa's cat has been checking out the bed and has approved it.

Private Room

Ma was transferred to a regular room yesterday. The nurses had set aside a private room for her. All her previous rooms had been private (or semi-private but no roommate), but her new room is the biggest room in the unit. The bathroom is large enough for wheelchair users. It's nice to have connections. Did I mention I'm glad Dorothy's back? :)

Ma's pain is under control. Around breakfast time she had bad pain despite both the Toradol and Dilaudid, but Darvocet brought it under control. The rest of the day, Toradol kept her comfortable enough that she hardly used the Dilaudid (on PCA). I don't know why her doctor didn't do this kind of pain control for her after her first surgery. It would have kept her more comfortable.

Some friends visited with Ma early in the afternoon. Then Ate Vicky & Ate Beth arrived with Tita Belen and Tito Pepe. They brought dim sum. Yum! I mean, Ma said they were delicious. I wouldn't know.

Cirrhosis

Ma was in surgery from 7:50-9:30 Saturday morning. That's twice as long as her first surgery. The surgeon, Dr. Stanten, said that Ma's CT scan showed she has liver cirrhosis, and that's probably what's causing the fluid build-up. The fluid is pushing through her diaphram and into the lung area.

For now, Ma is in the CPU (Cardio-Pulmonary Unit), similar to the ICU. She has two tubes coming out of her chest again. This time she has a PCA (Patient-Controlled Analgesia), a device that lets Ma self-administer her own pain medication with a push of a button. She is getting Dilaudid through the PCA. She was given Zofran for nausea just once, so I told her to tell the nurse immediately if she starts feeling nausea after the Zofran wears off. In addition, she gets shots of another painkiller called Toradol every few hours. Between the PCA and Toradol, maybe she'll have better pain control this time.

Ate Eva & Raymond stopped by with some food -- lugaw, okoy and pancit palabok. Ma is on a liquid diet though and was really disappointed she couldn't eat the food.

Kit flew home yesterday. Since we knew Ma would spend most of the time sleeping right after surgery, Pa & I took went ahead and took Kit to the airport ourselves and kept her company till it was time to go through security. The food at the International Terminal is actually pretty good. We had lunch over there -- noodle soup with BBQ duck, unagi bowl, and sushi (soft-shell crab, unagi rolls and salmon skin rolls).

I failed to mention before that Ma's previous CT scans and PET scans showed cirrhosis. No one ever suggested doing anything about it, maybe because her breast cancer is more important. Ma has tested negative for hepatitis, so I don't know how she ended up with cirrhosis. Hmm, is Ma a closet drinker??? The only symptom she seems to have is edema. Maybe she can see a liver specialist on Monday.

Here's where I get confused. Ma's breast cancer did not cause the cirrhosis. The cirrhosis caused the pleural effusion. Her pleural effusion is probably not malignant then, just as her tests always indicate. Does this mean all these problems she's been having have nothing to do with breast cancer?

Photos 6/27/08

Ma & Kit. You can see the Pleur-evac (the canister connected to Ma's chest tube) in the left foreground.















Ma & Pa














(Clockwise) Isa, Kit, Ma & Lou

Repeat Surgery Tomorrow

Ma is scheduled for surgery at 7:30am tomorrow. She had a CT scan of her chest this afternoon. The ultrasound yesterday didn't show anything abnormal. The surgeon was concerned that Ma might have ascites due to the amount of fluid she's producing, but the ultrasound was negative.

The fluid has been draining into a canister that holds 2.5L. It took 4.5 days to fill the first canister, 29 hours to fill the second canister, and 27 hours to fill the third. She's on her fourth canister. The surgeon said he's never seen anyone with so much fluid. I hope tomorrow's surgery works because I don't think the surgeon knows what else to do. There is something called a Pleurx Pleural Catheter that allows you to drain the fluids from home, but the amount of fluid Ma produces would overwhelm the system.

Possibly More Surgery

One of the thoracic surgeons stopped by. He said if Ma's fluids don't clear up by tomorrow, she will need surgery again. It's going to be the same procedures as before -- VATS and pleurodesis. This afternoon she had an ultrasound done on her abdomen. I don't know what the doctor expects to find.

I don't like Ma's new day shift nurse. Maybe she was just too busy today, but she seems easily flustered. This morning, it took her almost two hours to give Ma her pain medication. Then she gave Ma the antibiotic IV for another patient. As Ma pointed out to her, she should have checked the name on the IV bag against Ma's ID bracelet. I know she was busy, but isn't that why they have these cross-checking procedures -- so that they don't make mistakes like this especially when they're busy? Fortunately, the other patient's medicine is the same as Ma's. Nevertheless, if they assign her to Ma again tomorrow, I will ask for another nurse.

There was a little excitement today. As I was walking down the hall, the fire alarms started ringing, and the intercom announced, "Code Red, Code Red!" Doors everywhere started closing automatically. I thought I was trapped in the hallway, but the doors were actually unlocked, and I managed to get back to Ma's room. Ten to fifteen minutes later, the All Clear was given. It turned out the alarm was triggered by someone smoking on the first floor.

Breathing Exercises

I just found out that wi-fi is available at the hospital. Woohoo! The other hospital didn't have it, and neither did the other hospitals I've visited in the area, so I assumed Summit would be the same way. I'm happy to find out otherwise.

The physical therapist made Ma walk without a walker. She was able to do it with a little help. Hopefully she'll be able to walk unassisted by the time she goes home.

The amount of fluid draining from Ma's lung is worrisome. Her surgeon is on vacation. Maybe we can catch his backup tomorrow and ask him about it.

Her nurse ordered an incentive spirometer so that Ma can exercise her lungs. I thought they usually give you one right after surgery. I don't know why it took so long to get one. Ma is having trouble getting the hang of it. I run out of breath myself just watching her try to use it. She breathes too fast and seems unable to hold her breath. Kit told her to pinch her nostrils when inhaling, and that seems to help.

Still Draining

Ma's remaining chest tube is still draining her lung. Unfortunately, it shows no signs of letting up. There has been no further estimate on when Ma can go home. I'm afraid her doctor is going to say that the pleurodesis failed again, and she'll need more surgery.

Other than the fluid, Ma is doing well. They're making her walk around the cardio unit 4x a day. She's able to use the toilet instead of the commode, and she brushes her teeth at the sink. And her appetite is good. Kit sneaked in some fried quail and boiled peanuts for her today.

Down To One Chest Tube

Ma is still in the hospital. One chest tube had stopped draining, but the other one is still draining fluid. The doctor stopped by and removed the first chest tube. She turned off suction on the other one to see if it will stop draining. If it does, it can be removed today. The nurse removed Ma's catheter in the afternoon. She's now down to just one tube coming out of her. That should make walking easier.

The surgeon gave Ma a shot of morphine before removing the tube. I was afraid morphine would give her nausea, but it didn't. Maybe because it was only 1 mg. She also had Darvocet in the morning, and that didn't make her sick either. With Fentanyl, that makes three drugs that don't make her throw up.

Dorothy & Kuya George are back. They stopped by along with Anjelica. I don't know what it was I wanted Dorothy to help us with. I can't really complain much about the standard of care. The only thing that bugs me is the different protocols that each nurse follows when using the Port-a-Cath. I have to ask them each time if they used Heparin when disconnecting her IV. But I'm glad Dorothy's back.

Anyway, Dorothy, Kuya George & Angelica brought a big pot of hydrangeas. Dorothy also brought parking passes and lunch passes. The cafeteria prices are actually reasonable, but parking is $18/day. We've been buying 3-day passes for $20. At Doctors, parking was free. Dorothy stayed with Ma while the rest of us had lunch. She said she'll be back to work on Wednesday.

It's amazing how many people Pa knows at the hospital. He knows Ma's surgeon, Dr. Khan, because he used to work at Doctors. He knows the dietitian because she works at both hospitals. Someone at the lab stopped by. She also works at both hospitals and had seen Ma at both ICUs. Her mother is a patient of Pa. Ma's swing shift nurse yesterday also knows both Ma & Pa. She's a neighbor in Hercules, and her in-laws are also patients of Pa.

Tita Belen Visits

Ma was transferred out of the ICU around noon yesterday. She still has her chest tubes and catheter. They're supposed to be removed today. She walked twice yesterday, about 100 feet each time, and was out of breath at the end. But her doctor said she may be able to go home this afternoon.

Ate Vicky finally told Tita Belen about Ma, and they came for a visit along with Tito Pepe, Dennis & Ate Beth. Tita Belen had been crying but was okay during the visit. At least Ma is looking much better compared to last week. They brought pad thai, watermelon, a pot of cyclamen, and a get well balloon. After the visit, Ma ate some of the pad thai. It was good. I had to do a taste test to make sure there was nothing wrong with it. :) Ma's blood sugar was 347. I hope it gets under control once she's home and is more mobile.

Clogged PORT-A-CATH

Ma's PORT-A-CATH got clogged last Wednesday while she was still at Doctors Medical Center. The nurses had been flushing her port with 3 ml saline after every use. It turns out that was not nearly enough. A nurse from the Cancer Center came over and injected TPA into the port to clear it. TPA is supposedly stronger than Heparin for dissolving blood clots. It took 2 hours to unclog the port. This is the procedure the oncology nurse recommends each time the port is used:

1. Flush with 20-30 ml saline.
2. Follow-up with 5 ml (100 units) Heparin

I wrote down the instructions for the nurses at Summit. They have a better protocol that they follow compared to Doctors Medical, but I nag them anyway, just in case. I also remind every new nurse not to use Ma's left arm and that she has a port. I don't know if they do it at Summit, but at Doctors they rotate the nurses. Ma would always end up with a new nurse who's not familiar with her requirements. Even though there's a sheet in the room saying not to use her left arm, the nurse doesn't always notice the sign. I've had to stop more than one person from using her left arm.

Update 07/20/08: I added clarification that 5ml Heparin = 100 units. Also, if the patient is on a saline drip, the Heparin can be skipped till the saline is discontinued. The saline drip should be at 30 ml/hr.

Pain

Well, I was right to worry. Ma woke up with really bad pain last night. She pressed the button to call the nurse but didn't press hard enough. It took an hour for the nurse to get to her. And when she got her painkiller, it took a while for it to take effect. Also, she needed the max dose of 50 mcg. We'll see if she fares better tonight. I asked about staying overnight at the ICU, but they don't allow it. Too bad Dorothy isn't around to pull strings.

Other than that, Ma seems to be doing well. Her appetite is good, and she went for a very short walk today complete with a walker, two chest tubes and the containers they drain into, a catheter, an oxygen tank, and a portable monitor for her vital signs. It took way longer to prepare her for her walk than to do the actual walk.

No Ventilator

The surgeon, Dr. Khan, was running late. Ma wasn't wheeled into surgery till around 17:20. By 18:20, she was done. The surgeon said it took him only 5 minutes to do the procedure instead of the 30 minutes he estimated. I assume he did a VATS or he wouldn't have been done so quickly.

Ma was in the recovery room for a long time before being transferred to the ICU. We didn't see her till almost 21:00. She has two new chest tubes coming out of her; the old one was removed. The good news is she's not on a ventilator! She was alert and talking when we saw her. She also didn't have any nausea from the anesthesia.

Originally the surgeon prescribed morphine for the pain. But we pointed out that Ma gets nausea from morphine and asked if she can have Fentanyl instead. The nurse got approval for up to 50 mcg. But it will be given to her as needed. She's not on a continuous drip. I'm worried that they won't be able to control her pain as well if they have to wait for Ma to complain about pain before giving her more Fentanyl. But at least she can communicate since she's not on a ventilator. I told her to make sure to tell her nurse as soon as she feels any pain.

Pa didn't stay overnight today. We didn't bother asking if he could. And Ma didn't complain about Pa going home. Maybe she really is getting better.

Thoracotomy

Ma is having a video-assisted thoracoscopic surgery (VATS) and another pleurodesis done tomorrow. If there is too much scar tissue from her first chest tube, the surgeon will have to do a thoracotomy. He will also scrape her lung and pleural lining. The surgery is supposed to take only 30 minutes. Ma will end up with 2-4 chest tubes. She will have to be put back on a ventilator again. She will be in the ICU for 3-5 days. That's if everything goes well. Nothing has gone well for her so far. Pa approved the surgery. I think if Ma could remember how much she suffered the last time, she wouldn't agree to it. She thinks the surgery will make her better.

Transfer to Summit Medical Center

I just got home. Ma got transferred to Summit Medical Center. We will meet with a thoracic surgeon tomorrow. She is supposed to have surgery on Friday -- something called VATS. It's supposedly "minimally invasive," but it sounds too risky to me. I'll know more tomorrow and will ask about other options, but there doesn't seem to be many.

Summit is where Dorothy, Kuya George's wife, works as a nurse. Unfortunately, she's on vacation in Europe, so we can't call on her for help.

Chemo #1 Day 21 - Good Appetite

Ma got half a dose of Ativan last night. She slept well overnight and also slept quite a bit during the day, but nowhere as much as yesterday, thank goodness. She ate a lot today. For lunch, Kit brought Filipino food that Tito Lum cooked. In the evening we had Thai food -- fried quail, pad thai and fried rice. Ma also had boiled saba banana and corn on the cob. The physical therapist made her walk down to the nurses' station using a walker. She had to rest on a chair twice along the way but was able to walk back without stopping. She still has loose stools, possibly due to her antibiotics, and is taking Imodium for it.

The hallucinations seem to be gone. Ma seemed clearer yesterday, but I wasn't sure because she was asleep most of the day. But today her mind is totally clear, although she still sometimes speaks to me in Kapampangan.

Dr. Majid, the first pulmonologist who treated Ma, stopped by today. He ordered suction (aka negative pressure) added back to the canister that her pleural fluid drains into. This will suck all the remaining fluid out of her chest. If her x-ray looks good tomorrow, he will remove her chest drain. Then maybe she'll be able to go home soon after. This is the first time that going home has been mentioned. Unlike Dr. Raees, the other pulmonologist who treated Ma, he doesn't recommend another pleurodesis. If the pleural effusion comes back, he recommends that a tap (drain) be implanted in Ma's chest. I'll have to find out the proper name for it.

A couple of days ago, Ma's pleural fluid was tested again. For the third time, it came out negative for cancer. But as I mentioned before, Dr. Majid thinks either her pleural lining or her lung is malignant. All the signs point to one of them being malignant.

Chemo #1 Day 20 - Zzzzzzzzzz

Not much happened today. Ma was given Ativan last night. It was too strong for her, and she spent most of the day sleeping. Her voice is hoarse. Must be due to all the talking she'd been doing the last few days.

Ma's hairdresser and friend Auring came to visit along with her husband. They brought a flowering plant and a big bag of sweet cherries. The lady across the hall from Ma & Pa's office sent a large and beautiful flower arrangement.

Chemo #1 Day 19 - Lots of Visitors

Pa left the hospital before I arrived. When I got to Ma's room about 20 minutes after he left, Ma was sitting up on the edge of her bed. She was able to sit up by herself. I'm glad she didn't try to actually stand up by herself or she would have fallen. Now we know for sure she shouldn't be left alone at all.

She said she was in pain, rating it a 5/10. But I told the nurse to try Tylenol first instead of something much stronger, and that did the trick.

Pa didn't get much sleep again. Ma had a panic attack last night. She was crying and kept saying she was going to die. Tonight she'll be given Ativan to calm her anxiety and maybe help her sleep. I don't think she's been sleeping well at all. When she tries to nap during the day, she's really restless. I don't think she's fully asleep at all.

Ma's been getting Colace (a stool softener) the last few days. They had to stop it though because it worked too well. Now she has to take Imodium. I wonder though if it's the Boost protein drink (similar to Ensure) that's been giving her problems. It contains milk, and Ma is lactose-intolerant.

Ma was able to sit up most of the afternoon. She seems to be a little stronger in that she can get up with minimal help. We haven't tried to make her walk yet though. There's no word on when she can go home because her chest tube is still draining fluid.

There were lots of visitors today. Ate Eva & Raymond arrived with tons of Filipino food -- buro, chicharon bituka, talong, ampalaya, puting keso, rice, ginatan and puto. Ma ate a lot of food. She was really happy. Buro is one of her favorites. Later Isa arrived with BBQ & arroz caldo for Ma. She was followed soon after by Pa (who got some much-needed sleep and brought corn requested by Ma), Tito Lum, Kuya Richard and daughter Marianne. After they left, Ma & Pa's friends Tito Bien & Tita Litz came for a visit.

It was a long day for Ma. I hope she sleeps well tonight.