Thursday, May 24 th 2007

Services.
Visitation will be held on Friday, May 25th from 5 to 8 pm.
Baldwin Fairchild, Oakland Chapel
5000 CR 46A Sanford. (corner 46A and Rinhart)
Robin loves flowers. We spoke in advance about it and that is what she wants.

The Funeral Service will be held Saturday morning, 11 AM at Annunciation. Then we will return to Baldwin Fairchild (the cemetery).
Annunciation Catholic Church
1020 Montgomery Road
Altamonte Springs, Florida 32714
407-869-9472

Wednesday, May 23 2007

It is over.
Robin fought hard. She didn't want to give in but the cancer was too much. She passed away peacefully and when she was ready. We played music for her at the end. She was with the people she loved and the people that loved her. Pray for Katelyn, Alyssa and Anthony as they come to grips with this. The funeral will be held on Saturday.

Sunday, May 20 2007

Robin is heavily sedated to ward off pain. Her heart continues to go on because she is a strong women who refuses to give in . She would endure anything to be with her children again. Robin did not have the luxury of growing up in a typical family. She so much wanted her children to have what she did not.
Thank you Ives for last night and Lourdes for staying tonight.

Saturday, May 19

The doctor who examined her said that Robin could possibly only last a few hours this afternoon. As usual, Robin proved him wrong. Her vitals were stable at 10PM tonight. Special thanks and love to Eives for staying the night so that I could get rest. Thanks to my friends who I haven't heard from in years. Robin is strong, not in pain, and could prove the doctors wrong again. We continue to be grateful for all the prayers, love and support from family and friends. I know that I wouldn't be able to do this without each and everyone of you.

Friday May 18th 2007

It is not going well. I don't know if she has a rally left in her. Please pray that she no longer suffers and that she can find some peace.

Thursday May 17th, 2007 (morning)

When they went to draw fluid from her lungs they discovered that there was not enough fluid to make it worthwhile. I guess that's a good thing. They didn't have to put her through a procedure that could have caused other problems.
Unfortunately, allthough they loaded her with platelets last night she was low again this morning. Last week I had a conversation with Nurse R about the possibility that the edema dilutes the platelet reading. She has been going up in fluid volume so that may have an effect. Dr. F informed us that the CAT scan from the other day showed possibly tumors in her lungs. I'm going to choose to believe that he read it wrong.

Night update

Robin has a procedure to remove fluid from her lungs tomorrow at 8:00 am. The risks are bleeding and a collapsed lung. They are loading her with platelets overnight to prepare her. She was nervous about it tonight. But when it is done it will make breathing easier. They've started diuretic again to help the edema. That should also help breathing and relieve pain in her legs.

I called my sister and put her on speaker using the cell phone. That worked well because we both could hear. She even wrote out questions. We watched a movie and she seemed to enjoy it.

Wednesday May16 (morning)

Robin had a problem last night after they repositioned her. It made her short of breath and she went into a panic respiration. It took about an hour to settle her down. We need to get fluid (edema) out of her (but not too fast). Also the Dr will drain fluid from her lungs as soon as her platelet count gets high enough.
We are trying to learn actual sign language.

Visitors

I don't know if anybody has been holding off but I think Robin is okay to have visitors.

Tuesday May 8th, 2007 (Morning)

KT reports that Robin is chipper again this morning. Dr. F reports that her liver is doing better.

We got platelets again last night but no tag came with it so we can't thank the responsible party. Keep up the good work. Yesterday they brought a bag of platelets (Scott S) in the morning. They asked for 2 but the blood center wouldn't give them up because they didn't have spares. When we have the directed donations waiting for her we won't have that problem. So your pain and time is helping so much.

Night update

Robin survived surgery and is recuperating. They found that the g tube had pulled out of her stomach. I suspect that all the jostling caused by moving her when the power went out might have caused it. They removed the tube. Now she has a nasal g tube to drain her stomach and perhaps later feed her. This is more uncomfortable but in the long run the tube had to come out of her stomach anyway. They discovered that her surgical wound ( about a 7" opening) is not healing well. Also tomorrow they will stick a big needle in her back to drain fluid out of her lungs.

Another update - Surgery needed.

Robin was doing well but Xrays show a leak from her stomach. She will have to have surgery today to repair it. All the usually concerns apply. Hopefully she will not be in so much pain when she comes out of surgery. Best case is that they decide to remove the G-tube entirely and use a nasal tube to drain and feed her directly to her stomach.

We got our first directed donation for plateletes. Scott S. was the donor. She is in constant need of platelets - in fact right now we are waiting for platelets to arrive so that they can start surgery. Try to stagger the donations because the platelates don't last long.

Monday May14 (morning)

Quick Update.
Robin is doing better this morning. According to KT she is awake and smiling and asking about what is going on around her. They are moving her to ICU #6 which is a little larger and brighter. They are also taking her down this morning to xray her to see if they can start feeding her through her G tube.

Mother's Day

Not much change today. Mostly she "rested". She acknowledges visitors but does not interact. She asked to see the kids so we brought them on. But she was too tired. But they got to kiss their mother on Mother's day and she got to see her children. Hopefully she'll start to gain some strength again.

May 12th, Saturday

Robin was a little better today. More awake but miserable. Hopefully she will be well enough tomorrow that we can bring the kids to see her for the first time in 3 weeks.

May 11

Robin is not having a good day. Low HR and BP, leg cramps and a clot in her leg. You may want to consider that when making visitation plans.

May 10

Trach surgery went well today. Robin had the tubes removed from her nose and mouth. Although she is still on a respirator and can not talk or eat she can at least smile and mouth words.

Wed May 9th

Afternoon -
KT called me this morning and said Robin was doing well, like yesterday. Trach surgery is tomorrow (no time yet) and the PICC will be done then. Her platelets were over 50 (which they need it to be +50 for surgery) and they will be giving her more today.

Night update

She is the most communicative today than any other day - writing lots of notes. She wrote a note that said "I want to go home". She even said she wants to see the kids. We'll wait until she gets the trach put in then hide her neck under the blanket. She is watching TV for the first time. Scratching and moving her feet around.

Platelets were low today even though they gave her some yesterday. She had been doing a good job of maintaining them. They are giving her more today.

They put on a diuretic yesterday and she lost 5950 ml of fluid (they put 2690ml in). The doctor decided to give her half the amount of diuretic today.

Trach surgery is scheduled for Thursday and she should get her PICC line tomorrow. If she has strong days like this she'll be strong enough to ween off the respirator. She hasn't been asking for the anti-anxiety med. Her HR has been low (50's) with a good BP.

Tuesday May 8th, 2007

So far this morning she is resting okay. Kathy may get to talk to the doctors this mornming and then I will have another update.
Platelet donations are now set up for friends. The account # is 290982. Make an appointment.
There are many Florida Blood Center locations throughout the state. I don't know for sure that if you are in a non-local county that they can transfer the blood. You will have to ask when you make the appointment.
http://www.floridasbloodcenters.org/

Seminole County
Florida's Blood Centers—Altamonte661 E. Altamonte Dr. #327 • Altamonte Springs, FL 32701(407) 831-6373 FAX 407-303-2680 Hours: Tue, Wed 11:00 AM - 7:00 PM Fri 7:00 AM - 3:00 PM

Florida's Blood Centers—Oviedo1954 W. St. Rd. 426 • Suite 1100 • Oviedo, FL 32765 (407) 588-1291 l FAX (407) 365-9982 Hours: Wed, Fri 9:00 AM - 5:00 PM Thu 11:00 AM - 7:00 PM Sat, Sun 8:00 AM - 4:00 PM

Florida's Blood Centers—Sanford1302 E. Second Street • Sanford, FL 32771(407) 322-0822 l FAX (407) 328-1119Hours: Mon, Thu 11:00 AM - 7:00 PM

Florida's Blood Centers—Winter Springs268 East SR 434 • Winter Springs, FL 32708(407) 327-3336 l FAX (407) 327-4347Hours: Mon, Wed 9:00 AM - 5:00 PM Tue, Thu 11:00 AM - 7:00 PM Fri 7 AM - 3:00 PM

Local Hospitals We Serve ( Hospitales Locales Que Suministramos):
Florida Hospital Altamonte
Central Florida Regional Hospital
South Seminole Hospital

Orange County

Florida's Blood Centers—Headquarters Campus8669 Commodity Circle • Orlando, FL 32819(407) 248-5000 l Toll Free (888) 9-DONATEHours: Mon 9:00 AM - 7:00 PM Tue, Wed, Thu 9:00 AM - 5:00 PM Fri 6:30 AM - 5:00 PM Sat 9:00 AM - 3:00 PM

Florida's Blood Centers—Downtown Orlando345 W. Michigan St., Suite 106 • Orlando, FL 32806(407) 835-5500 l Fax (407) 835-5505 Hours: Mon 9:00 AM - 5:00 PM Tue 11:00 AM - 7:00 PM Wed 6:30 AM - 8:00 PM Thu 9:00 AM - 5:00 PM Fri 6:30 AM - 5:00 PM Sun 8:00 AM - 4:00 PM

Florida's Blood Centers—Apopka131 N. Park Ave. • Apopka, FL 32703(407) 884-7471 l Fax: 407-884-7475Hours: Tue 11:00 AM - 7:00 PM Wed 7:00 AM - 3:00 PM Fri 9:00 AM - 5:00 PM

Florida's Blood Centers—Florida Orlando2311 North Orange Ave • Orlando, FL 32803(407) 898-6446 l FAX (407) 898-6447Hours: Mon, Tue 9:00 AM - 5:00 PM Wed, Thu 11:00 AM - 7:00 PM Fri 7:00 AM - 3:00 PM

Florida's Blood Centers—Valencia Community College1800 S. Kirkman Road, HSB Bldg. • Orlando, FL 32811 (407) 522-3779 FAX 407-522-3797Hours: Mon, Wed 9:00 AM - 5:00 PM Tue, Thu 10:00 AM - 6:00PM Fri 9:00 AM - 3:00 PM

Florida's Blood Centers—Winter Park5201 Raymond St., Bldg. 3126 • Orlando, FL 32803(407) 644-8927 l 407-644-7609Hours: Mon, Tue, Fri. 9:00 AM - 5:00 PM Wed, Thu 11:00 AM - 7:00 PM

Local Hospitals We Serve ( Hospitales Locales Que Suministramos):
Arnold Palmer Hospital
Florida Hospital Apopka
Florida Hospital East Orlando
Florida Hospital Orlando
Health Central Hospital
M.D. Anderson Cancer Center
Orlando Regional Lucerne Hospital
Orlando Regional Medical Cent
Sand Lake Hospital
Winter Park Memorial Hospital

Night visitors

I can't be there for the night shift so I like to know someone else will be. Let me know if you are going to be there after 8pm. (just got off the phone with Debbie K and she is on her way up.)

Orders to allow friends to donate platelets were faxed over after hours today. The surgeon is trying to fit Robin in for the trach surgery. She really is needing to get that done before the tube causes a problem. They are giving her benydral for itching. That coupled with the sedative makes her sleepy. But sleepy is a lot better than how she was Sunday. The nurse said being on the respirator makes patients nervous so that adds to her wanting sedative. She has to ask for the sedative and she can have it once every 6 hours.

I charted the #s for her fluid gain/loss each day. She lost 50% of her fluid in 3 days. They have put her back on a different diuretic at a lower dose.

Platelet donation update

Good news is that we have a donation account #290982. So you can make an appointment. At the moment though the orders are written for family only. I've asked the nurse to get the orders rewritten to include friends.

Monday, May 7, 2007

Quick morning update:
Thankfully, Kathy T. is back after having to be in a wedding over the weekend. It sounds like Robin is more relaxed and interactive this morning. (I'm sure just having Kathy around relaxes her). They are scheduling a trach and PIIC line for Wednesday. They have to get her blood clotting level just right before they can do that. They'll give her the complete package of blood, platelets, plasma etc.

And that reminds me. We may actually be able to donate platelets soon. The Dr. did write the orders to allow friends and family to donate (per Kathy R's request) but it was never sent for whatever reason. Might be because it was unreadable. Mara, yesterday and today's nurse said she will type the orders, have the dr sign them and fax them to the # the blood center gave me.

I'll have at least one more update before the end of the day.

Honestly, there are so many of you to thank that I can't thank all of you enough. But, again to everybody that has helped you are Robin's angels. (Just visiting and talking to her helps too). I don't know what I would do with out all of you.

Sunday May 6 2007

Rough day.
Which I suppose I could have predicted after having such a good day yesterday. Her BP dropped early in the morning. They gave her BP medicine but then her HR jumped to 160 and her respiration was in the 30’s. She was very critical. Even the Nurse was nervous. It took a few hours but she finally got stabilized somewhat. The nurse attributted it to the rapid fluid loss of the last few days and took her off the diurectic.

The weekend kidney doctor came by and wanted to put her back on the diurectic but I told him I didn’t want her to have another episode. He argued but in the end he left w/o writing the orders so the nurse said she would wait until morning for the regular doctor to get it claified. We checked the volume #s (BTW I have the red notebook with me). And it showed that she was getting more liquid than giving at first but for the last 3 days she was losing more than gaining. The nurse and I think that was a shock to her system. The doctor on the other hand was just looking at her overall #s and just wants her back to admitting weight.

I imagine she will have to get a trach tomorrow. I don't see her being taken off a respirator with what happened today. She might get the PICC at that time too.

There was a whole issue with her getting anti-anxiety meds. She had asked for them yesterday and I thought she got them but apparently not. When I got there I had to make the nurse get orders for them which she finally did. May have contributed to the problem this morning.
On a positive note her bowels are working. If she didn't have the other setback today we'd be in good shape.

Lets pray for a better night.

Cinco do Mayo,

Post OP Day14 - Robin wants a Margerita.


Robin is doing quite well and has a renewed positive attitude. She is feeling so good that she rescinded the DNR that she had wanted at the time of the surgery. She is writing on the white board w/o any problems. Most of her requests are to scratch an itch on her head. She has told me things to do regarding the children. When I told her Katelyn was going to Steak-n-Shake after her competition she asked if I gave her money.

The last time she had surgery it took a long time (a month) to rid herself of the fluid that had accumulated in her tissue (edema). In the last 2-3 days she has lost most of the fluid she has gained. This is wonderful progress.

The edema is painful and causes lots of complications. They have to be careful giving her diuretics because of its effects on the kidneys. It also causes problems with BP and heart rate. But Robin has had none of the problems. Her vital signs have held and her kidneys are functioning well. She can bend and move her legs and she is just more comfortable. (We did some PT on her legs today). Also because the edema is gone they can take the central line out of her neck and use her leg instead (if they don't do a PICC in her arm). The fluid tended to leak out of wherever it could - like her surgical scar. So now that can heal better. Also because she has less fluid in her the platelet count is better although the # may be the same. It's a higher %. So a count of 24 today is a lot better than a count of 24 a week ago. In fact, I think they are skipping a platelet infusion. Not having the edema makes it easier to sit up which is better for respiration. Also she needs to be sitting up to be fed.

Everything today was positive. When they changed the dressing on her surgical scar it was dry. The biliary bag was changed and was draining properly. Kidneys are fine and she doesn't have any new infections. She is healing and getting stronger.

Unfortunately, they don't wean off the respirator on the weekends in case of problems so we'll have to wait until Monday. But I'm pretty sure she is close to not needing it.

Thank you again to everybody for the help and prayers.

I met the infection Dr. who said she was doing good in that she didn't have any new infections. Due to her "liver failure" they have her on a series of 3 antibiotics that they rotate through out the day.
She was very responsive today. They took her off the sedative. She is still off the BP medicine. They gave her lasic to make her eliminate all the fluid they put into her. It worked and they were very happy that she was able to keep her BP up. She lost at least 6 liters.
She did well over night breathing on her own but she wasn't getting enough oxygen in her blood so they had to turn that up. Either she'll work her way off the respirator now or she'll get a trach and do it later. A trach is better than having the tube down her throat.
They are worried about her getting an infection in the central line in her neck so that is why they want to put a PICC line in her arm. The Dr. they need to do the arm procedure isn't on this weekend so they'll have to wait until Monday.
I think of much more to write while I'm there but I'm too tired by the time I get home. Thank you to everybody that has been helping.
Oh. Tomorrow she has RN Ruel who we like. Sarah, our other favorite, is also working tomorrow. She checked in on Robin this afternoon. Susan has had her all week and is also very nice. They have a pretty good crew of nurses up there.
Sometimes Robin points down at her bed with both hands. That usually means "what day is it?"
So she is still a bit confused.

Thursday, May 3 2007

They need to try to change her IV line in her neck so that it doesn't get infected. They couldn't get a vein to put a PICC in her arm. I don't know what they're going to do. The more she stays in ICU the more likely she is to get infections etc. Kathy said she was more lively during the day. She looked tired tonight. They had to give her benatral for itching probably because her bellarubin is going up. Lets hope she gets off the respirator. They turned down the settings while I was there and she did good. I talked the doctor out of giving her a trach for now. They are going to try to wean her off the respirator. Platelets were up (for her) to 42. Highest they've been while in the hospital.

Wednesday May 2 2007

Seemed like a good day today. Dr.s Curan and Kiley from Annunciation stopped by yesterday to visit and pray the Rosary for Robin and she was much more settled today. They cleaned her all up and got rid of one of the bags hanging off her. Surgeon said she was healing good. They took her of the BP med. We'll see how that does. She has a button that she can press to administer extra morphine when she needs it. ( They keep changing the pain med). She was awake and aware much of the day. Communicating by using the white board. She asked me if she was going home and I told her eventually. We have a different day nurse, Susan, that we like. Greg said the night nurse was one we had before to so I'm sure she's nice. Ethel bought a guest book to leave in the room. You can sign it and leave a note when you visit if you want. I'll check it for notes. Sometimes people come by and I don't even know it. Sorry if I left anybody out. We have been using the red folder to note any medical stuff (changes in meds, BP, etc).

Tuesday, May 1, 2007

They did a CAT scan over night because she was having stomach pain. They saw something in the spleen. The surgeon didn't see anything when he was in there, though. She was awake during the day but in pain so we told the nurse. I don't know if they upped the pain med or sedation. I hate to say it but her current day nurse has not been as attentive as the other nurses. I wrote the names of the drs, nurses and meds on the back of the red folder. If we take a note of which nurses we like we can request them. I've also started to keep some notes in the folder. Feel free to update them.

It appears to be so hard to donate the platelets for Robin that we may have given up on that. They seem to have enough so we can leave that on hold for now.

Monday April 30th, 2007

Robin is back at South Seminole. My favorite nurse was taking care of her today. But they've all been good so far. I talked to her surgeon. He was talking again about wanting to feed her through her stomach tube - we'll see. She's also on about the lowest respirator setting, so they said she may come off of that soon. She's heavily sedated, which is probably good right now because she is having stomach pain when she's awake. She's gained about 40lbs of liquid weight. Her right arm was more swollen than her left.
Apparently, any one of 3 doctors can order platelets for her. Dr. Alonso is the Attending Physician so I would use him. You have to make an appointment to give platelets and it takes 1.5 - 2 hours from what I've heard.

Sunday April 29 2007

Post op Day 8
Just as we are getting settled in to ORMC they tell me that they might transfer her back to South Seminole. We pleaded with the nurse to tell the powers that be to leave her at ORMC where she wants to be. Finally it was up to the attending physician at ORMC who isn't there on a Sunday. But his backup was ok with it. So she'll be staying as far as we know.
She was under sedation today so no communication. They talked about taking her off the respirator. The did take her off the BP med. SHe might have started to run a temperature which would nmean a n infection and would be bad.
The blood donation thing is all messed up so don't worry about that for now.

As I'm writing this the nurse called me to tell me they are moving her back to South Seminole when a bed opens up. Call before you go to visit:
ORMC CCU (321) 841-5200
South Seminole ICU (321) 842-5260

Late late sAT NIGHT UPDATE

due to a powe failure at south seminole robin has been moved to CCU #9 at ORMC. iT HAppens to be where she wanted to be so that all her regular dr.s can see her.

Saturday, April 28, 2007

Post op day 7
They let up on her sedation and she was very awake tonight. Writing lots of notes on the tablet that Ethel and Jackie D. got for her. Very good idea. She asked about the kids. And her medications. She seems to be breathing good to me, but they don't have any immediate plans to take her off the respirator. They wanted to feed her through the stomach tube today but still no bowel sounds. Maybe tomorrow. You can donate blood/platelets for her at any Florida blood Center. It's called a directed donation and they said you'll need her SS# (?) so you'll have to call me for that information. She's at South Seminole Hospital. Different offices are open at different hours. Only a couple are open tomorrow. (Oviedo and downtown).

http://www.floridasbloodcenters.org/Content/fbcDonorCenters.htm

Florida's Blood Centers—Oviedo
1954 W. St. Rd. 426 • Suite 1100 • Oviedo, FL 32765
(407) 588-1291 l FAX (407) 365-9982
Hours: Wed, Fri 9:00 AM - 5:00 PM | Thu 11:00 AM - 7:00 PM |

Sat, Sun 8:00 AM - 4:00 PM

Florida's Blood Centers—Downtown Orlando
345 W. Michigan St., Suite 106 • Orlando, FL 32806
(407) 835-5500 l Fax (407) 835-5505
Hours: Mon 9:00 AM - 5:00 PM | Tue 11:00 AM - 7:00 PM | Wed 6:30 AM - 8:00 PM | Thu 9:00 AM - 5:00 PM | Fri 6:30 AM - 5:00 PM | Sun 8:00 AM - 4:00 PM

Friday, April 27, 2007

Post op day 6
Better today. More awake and aware. Asking for water every chance she gets. So if you see her and she looks like she's trying to tell you something it is probably that she wants water. She also is hungry. They have a tablet that she can point at to tell us what she wants. What she really wants is the damn tube out of her mouth. Platelets were higher this morning (36). They gave her more - we will see what it is tomorrow. They also gave her some hemoglobin (blood). No big deal. They've almost had her completely off the BP med. I hate to see her like this but hopefully she is getting better.

Thursday, April 26, 2007

Post Op - Day 5
They gave her platelets again today. Her # is still low (in the teens - 130 is normal). Most likely the infection in her abdomen caused by the perforated ulcer is using up the platelets. She can't make them fast enough to keep up. Her bowels are still not active - it's one more thing that should start to recover after a surgery.
They are trying to get her to breath on her own so they've lowered the amount of breaths forced by the respirator to 6 from 12 breaths/minute. She makes up the other breaths on her own. They've also lowered her pain med causing her to be easier to wake. It also should help with her blood pressure so that they can take her off that med.
Biggest news is that I talked to her oncologist, Dr. Shah who has been treating her since she was diagnosed. She said she is checking Robin's blood results every morning and that we have to take it day to day. But she also suggested we need to think about the worst case scenario. She has talked to the oncologist at S. Seminole. I talked to him also. He had nothing to add other than they are doing everything they can for her.

Wednesday, April 25 2007

Unfortunately her platelet count went down over night. So they gave her platelets again during the day. I didn't ask tonight what her count was. The important thing will be if she maintains the count over night. I got a call from her oncologist's nurse today. She told me the Dr. will call me tomorrow. Not much else to report. She hasn't made any new improvements. It's really up to Robin now - whether or not she wants to fight.

Late update

Just returned from the hospital. Robin's platelets were up to 94. This is very good for her and if she can maintain that level it will be a good sign.

Tuesday, April 24 2007

Post op, Day 3
Bad news first. Her platelet count is still very low (12) and that makes the attending physician very pessimistic about her chances. He blames the count on the trauma and not chemo treatments. Despite the low platelet count she has clotted okay and doesn't have any internal bleeding. They continue to give her platelets through the IV.
She has gained 12 lbs of fluid as of yesterday (she gained 70 last time). She is still urinating - her kidneys are working. They pump all that fluid into her and it has only one way out. Otherwise, it gets absorbed by her tissue. Her temperature was low in the morning but seemed to get better by the afternoon. Still on BP meds. There is a bit of fluid in her lungs but they suction that out. When I hold her hand and talk to her she moves and opens her eyes so she is aware - of course she will not remember any of it. I think it's good for her to hear familiar voices. The nurses are more positive sounding about her condition.
Much love and thanks to anyone that comes and sits with her. It takes much weight off of my shoulders. I just don't have the strength I had last time. Let's hope and pray Robin does.

Monday, April 23 2007

Post Op Day 2.
Emergency surgery Saturday night for a ruptured stomach ulcer. She is in ICU at South Seminole. As we learned from her last major surgery recovery in ICU cam sometimes go backward before it goes forward. She is on a respirator and is completely sedated. She gets nutrients, pain medicine, antibiotic, platelets and something that controls her blood pressure via the IV. They occasionally lighten the sedative to check her responsiveness. Her body temperature is good. Her blood is coagulating properly. She has passed the first hurdle to recovery by urinating on her own (via a catheter). It means her kidneys our working and provides a means for eliminating all the fluids that are pumped in to her. Last time she blew up like a balloon and it was painful. Her color is good and she generally looks okay considering. In addition to the respirator in her mouth she has a stomach drain through her nose. She has another stomach drain through a hole in her stomach. Eventually she can be fed through that. They will one by one wean her off of each thing. I'm not sure what order. Maybe
- BP medicine
- respirator
- stomach drain in her nose.
I don't think they will wake her until they get the tubes out of her mouth and nose.
They're are many complications yet to worry about but we'll take them one at a time. I will try to update this everyday.

Wed, April 11 - Go Go on Topotecan and Avastin

Good day. Good News. Plateletes and Hemoglobin are up so I was able to get the Topotecan. Protein count was a 1+ so I was able to get Avastin, which I should have had last week but cannot cry over spilled milk.

the GREAT news is that my bilirubin level is within normal range. That means that it is functioning well. Shah still wants to keep the stint to avoid having to go through this process again, but she is going to check with Radiation to see if there is someway to clamp off the external stent even if only temporary moments.

It was a long visit today, but she will be getting back to me with more treatment dates. She said nothing about scans. I guess she feels that all the signs are looking good and this is still the best course of continued treatment. I've only had 7 or 15 scheduled Topotecans.

Thanking you all for your continued support, thoughts and prayers. I always feels these carry each day.

Wed, April 4 - Chemo Day Update - NOGO

Last Friday I had a platelet transfusion because they were so low on Wednesday (26). Today they were 64. Still too low for Topotecan. The protein in the urine was 1+ which is out of the normal range; however, Dr. Shah had been giving Avastin at that value. Unfortunately whe was not in the office today and the on call dr would not write the orders. Naturally, I am very upset about this but nothing I can do. So, I got nothing except the nausea medicine and changing of the needle. I also had to go in this week to have my tubing of the bilirium tube check because it had not been draining in several days. It turns out this is not only ok but maybe a good thing in that the liver is starting to process on its own and may be removed soon.

Wed 3-28-2007 - Chemo Day

Well, actually, it's "Let's spend the week at MD Anderson". I had to go in on Monday to get my blood typed and matched for a blood transfusion Dr. Shah ordered based on last weeks hemoglobin. Tuesday this week was the first time they could get me in for that. Jackie took me, but it was deceivingly a short visit as the week gets longer.

Tuesday Kathi takes me in for the supposed 2 hour blood transfusion. Appt 12:00pm, completed at 5:30pm. CBC indicates platelets are 40 (which is very low, 70 is the lowest margin Shah will use for me (anything lower than 100 is not good). So I know I won't get Topotecan on Wednesday, should be short day. Aranesp shot received.

Wednesday platelets are 26 (oooooh that's low) Needless to say, No Topo today. I did get Avastin, however. Appt time was 1:30pm, we managed to be out by 3:30, but now I need to go back on Friday for a Platelet transfusion. Never had one of those, but it sounds like I've reached a low.

Wed, Mar 21 - Chemo Week - Success

Scheduled and received Topotecan this week. Platelet counts were 70K, a little low, but they tend to push the envelope for me. That is all that I was scheduled for, so that was all I got. My sister-in-law Colleen took me. I ate pretty good today, considering. I had somewhat of a Panara's soup and sandwich. Not much by most people's standard, but I got some real food in me.

What is a Liver Stent? Biliary Obstruction?

I often get asked these questions, so, for those of you that want to know, here is a Q&A

BILIARY OBSTRUCTION - A blockage of the bile ducts can occur by a stone, tumor, pancreas (pancreatic tumor or swelling), bile duct inflammation, bile duct cysts, trauma, bile duct stricture, or enlarged lymph nodes in the area. When bile duct obstruction occurs, bile accumulates in the liver and jaundice develops due to the accumulation of bilirubin in the bloodstream.

how this was resolved 2/08/07 - or attempt at resolving obstruction via
Intervention Radiology Liver Stent

http://www.radiology.uiowa.edu/iowaendovascular/site/StentPlacement.html

Wed, March 14, 2007 - Chemo Week

Numbers were pretty good today. Platelet count = 133. Was able to have Topetecan and Avastin (although protein is still found in urine, it is 2+ rather than 4+ last week. Also received anti nausea medicine that should last 5 days. Still trew up 3+ times today. Trying desperate to hold some food down and put some weight one (believe it or not). Still experiencing pain at wound; had new ostomy applied today at ORMC. Thank you Debbie King for accompanying me today!!

Wed March 7 Chemo Week/Visit wtih Dr. Shah

platetes too low for Topetecan (38K)
too much protein in urine for Avastin so both are held
given Aranesp for low RBC
PT/INR=1.7, need to be taking coumadin 1mg nightly
Potasium low - take 40mg twice today

Dr. Shah -- still on wait an see; don't yet if treatment is working but we are handling each issue as it comes along. Given nasea med that is good for 5 days and have finally for the first day it what seems like week, able to hold on to some food and liquid.

still lots of pain around stent area making it very difficult to walk.

A Basic Recap of this 2007 Journey to catch yall up

Lots of folks know different levels details. I'm doing a high level recap and then slow but surely may go back to other specific entries which may require a history for myself (like when is the last time I took Topotecan vs Avastin Vs Aranesp.

Thank you for all your thoughts, prayers and concerns. It's been rough. Finally I got online today to try to get the blog site going again. In summary, I had found out that the 6 weeks of RAD to the pera aorta that ended in August 2006 did not quite do the trick as I had mets to the liver (3 nodules) and some lymp node involvement around the pancreas found in Nov 2006 scans. I went for a 2nd opinion to MDA Houston. Nothing came out of that. Decided to stay home with MD in Orlando starting a 6 month Topotecan/Avastin therapy. The Topetecan dosage has had to reduced at least twice, and I am rarely ever to get the three in a row they would like to see, before taking a one week break. My hemoglobin is quite low hanging around 92. My platelettes tends to plummet with the Topetecan which causes them to hold the treatment off. I also had several blood transfusions in January. Actually, I have spent a lot of time in the hospital this year. The most significant event that has occurred however is that my liver began to fail drastically (bilirubin = 19 should be between 0.2-2.0). They found an obstruction and built me an external stent. Very uncomfortably in many ways. Have had to have it changed twice due to excess leaking at the skin. Added an ostomy to that twice this week. Still on trial and error to find what works best. I'm immobile. I've been vomiting and have lost 20 bolds in 3 weeks. Finally today however I have actually put some food in my tummy and feeling a little bit better. Still a whole new life in which I feel I am riding backwards, as I do not have any idea as to what is next. I've got through end of April for the treatments, then I guess we will take it from there!!!

Sunday - Feb 11 Welcome Home

Well I missed my kids party but they had a nice welcoming for me. showed me all the videos, pictures, and presents. The fam was still all here. Trying to get used to living with this new external stent. It had been quite painful. Still nauseas and unable to eat much.

Sat - Feb 10 - It's A Party

I sit recovering in MD Anderson as my children celebrate the 7th and 9th birthdays at the skating. They had a great turn out. I was feeling too week to go home that day though.Kathi Thomas stayed until 9am, then had to get home to get Cory to the party. Jean came to spend a couple of hours. Finally, Colleen and Alice stayed with me while everyone else enjoyed the party. Greg came after the party to bring me video and photos of the party. It seems as though it all went very well and the kids were very happy with the outcome. That made me feel good. Debbie King spent the night at MD with me as I continued to have nausea and lots of pain getting in and out of bed to go to the bathroom.

Fri Feb 9 - Alyssa's birthday - I get a liver stent

Not only do I not get to see, kiss or hug my 9 year old on her birthday, but I spent pretty much the whole day in misery. What I though was going to be a quickie non-invasive procedure turned out to be something entirely. The good news, however, is that the stint has significantly improved the condition of my liver which was going down hill quickly. I had been yellowing in the eyes and skin little by little over the past couple of weeks, but this week's bilirubin revealed a value of 19 (very high considering normal is 0-2.

After 4 hours, they returned me to my room. I was starving, so I gobbled up some soup -- the threw up for the next 48 hours straight. I was pretty miserable. My friend Kathi Thomas stayed with me at MD Anderson that night. She said that she could not see me that way and leave alone for the night. She tended to me all through the night as I continued to through up. Lourdes and Mayra stayed until about 5pm that evening, as they needed to get back to their family in Miami. Magda came from Melbourne, and stayed pretty late too, but needed to get back home for the kids as they were coming to the party the next day.

Thursday, Feb 8th - Liver Obstruction

Thursday I got MD Anderson for a regular month PAP smear which turns out normal as usual. However, I have a message waiting for me from Dr. Shah regarding my liver enzymes from the day before. It turns out that my bilirubin is extremely high (0.4-2.0 )is normal. Mine was 19. My eyes were yellow, and again they give me the Hospice talk. Dr. Shah wants me to have an ultra sound to see if I have a liver obstruction to explain the high bilirubin. If not, they are not sure what is next for me. I have the sona gram but it is inconclusive. So they schedule me to be admitted to have Radiology take a look. If they find the obstruction, they will need to plant a stent to redirect the bile to the right place. That afternoon I went to the mall for the first time this calendar year to buy Alyssa birthday present and myself an outfit for the party. I had lunch at Harvey with Lourdes and Mayra. I'm the best I have felt in a long time. However, once I get home reality sets in and it's time to go to the hospital. Lourdes and Mayra take me. we get there after 6:30pm, so naturally radiology has home and there is nothing they can do for me this evening. They claim to have been waiting for me since 1pm, yet we didn't get the call at home until almost 5pm.

Dr. Sunshine greets me and tell me all the things that could go wrong and wants me to have another CT scan. The can takes place around 11pm and of course does not go smooth at all that day. They couldn't get an IV in me for nothing. Finally they realize that I have a power port which can be uses for CT scans. Not that easy though because that requires changing the port needle 3 times. The same port needle which had already been changed twice that day. Nothing was going good for me that day. To this day no one has even given me the results of that CT scan, so it must not have been that vital.

My friend Lourdes and Mayra spend a night at a bed and breakfast for friends and family of hospital patients. They say it was very descent for $40. The only hotel in downtown Orlando that night was $260.

Tomorrow is a long long day for me.

Feb 7 - My baby boy's 7th birthday

Unfortunately Anthony's birthday falls on a Wednesday, but he was in school. He got his cup cakes thanks to Nanny and hugs and kisses and gifts this morning. Party scheduled for Saturday at Deltona Skating Rink.

My dear friend Lourdes Hanimian is visiting me from Miami this week and I am so glad she was here to hold my hand through what comes next. Wednesday went off with out a hitch actually. I had my Topetecan, but I was really out of it. I was talking gibberish and not really making a lot of sense.

JAN 31 - I'M BAAAACK

Sorry to have been away sooo loong. Not only have I been extremely ill but forgot how to log into my blog account and finally figured it out today (2/22/07). I'm going to do my best to recall all the events in the appropriate order. I cannot remember Jan 31st right now except that it was a Wednesday and I must have gone in for something -- so this is a place holder for now until I figure it out.

Anyone out there that does remember please feel free to comment

January 24 - Topotecan Dose #3 Success

Although the plateletes are still a little low, we go for it. The does had to be lowered once again. We are hoping that this lower dose will keep my platelettes from going down too low, but it also means the chemo is less potent and less effective. This is the second time the dose is being lowered. We'll try again next week.

January 24 - Topotecan Dose #3 Success

Although the platelettes are still a little low, we go for it. The does had to be lowered once again. We are hoping that this lower dose will keep my platelettes from going down too low, but it also means the chemo is less potent and less effective. This is the second time the dose is being lowered. We'll try again next week.

January 21 -Two Nights Stay at MD Anderson

Over the past several weeks I had developed a subacious cycst that became painful and infected. I went in to see the Internal Practitioner at MD Anderson that assist with cancer related side effects. I had not been eating or drinking anything for several days, and became severely dehydrated. Dr. Mary felt that the side effects from chemo were becoming severe and that I needed to checked in for more imaging to see if the cancer was spreading more than expected. The pain had also become severe and out of control. Finally, after several days Dr. Kollas was able to find the right level of medication to control my pain. After nearly 6 weeks I am now able to sleep more comfortably. I still have a lot of pain associated with basic daily tasks and require assistance with basic daily task, but can at least control the pain. We are going to continue on the Topotecan and Avastin for at least a few more weeks in the hopes that we are able to slow down the growth of the tumors, as they do continue to spread. I needs lots of hopes, prayers and blessings.

January 10 - Topetecan Dose #2 is a SUCCESS

After my 2nd blood transfusion last week, my RBCs and my platelette counts are finally high enough to have the 2nd dose of Topetecan. My main oncologist is also finally back from vacation, so I feel in much better hands. She always makes me feel positive about the approach we are taking.

She suggests that we lower the Topetecan dosages a little bit because it appeared to bring my platelettes counts down so low (I know I cannot spell that word). She suggests that at this rate I would only be getting one dose of Topetecan a month which is not going to be effect enough to fight the beast before me.

I also received an Aranesp shot to keep my RBCs up. Since my port had already been accessed for the CBC reading earlier in the day, I only spent one hour in the chemo room. My friend, and former Nannny Jean took me to the hospital initially and kept me company until 1pm. Then my friend Jackie Pepe accompanied me for the chemo. It is always nice to have company. It makes the time go so much quicker and allows you to catch up with the real world.

This coming Wednesday I will have my first infusion of Avastin which I am anxiously waiting for, as this is the new anti-angiogenesis drug shown to have had success with recurrent cervical cancer. Please keep me in your prayers on these days especially.

Although this entry appears positive, I am still in a lot of pain. I am on very strong narcotics just to get through the day. Nights are very hard. Today, however, has been my best day yet, nevertheless. Either the meds are starting to work, or better yet, maybe the Topetecan is shrinking the tumor. Either way, I will accept this pain relief. Hopefully this will continue until the can function a bit on my own.

That's all for now. Thanks for checkin' on me.

January 3rd - Chemo Dose #2 Is a No Go Once Again

I could not get chemo again this week because again my red blood cell counts were too low. Something is obviously wrong, but we don't know what yet. Apparently my bone marrow is not functioning as it should. i had to spend the night in the hospital to get another blood transfusion. The transfusion was finished at 4am this morning, so naturally I just decided that I would spend the night. Chris was with me until 10pm, and at that point we knew it would be at least 4 more hours. Originally i was supposed to be out of there by 11pm, but nothing has gone per schedule yet, so why should this be any different.

My RBC was 9.2 today which is acceptable for chemo, so I should be able to get the chemo FOR SURE next week (or so I am told).

On a lighter note, we had a wonderful New Year's Eve Celebration at the Orlando Ritz Carlton. I am exhausted and need some time to recover from the New Year's celebration as well as the number of sleepless and painful hours that I spent in the hospital.