Marge's Status - 04/04

Wed. - Fri. - 4/28/04- 4/30/04

The last few days have been very trying and full of stress.  Wednesday Marge was still having the problem with her nose and felt so lousy that she hardly moved out of the recliner chair.  Not only was the nose still bleeding but the packing put in was giving her a tremendous headache.  The chemo lab nurse called and Marge was scheduled to resume the treatments beginning May 6th for 5 weeks.  They are going to watch her blood levels more closely and have labs scheduled the day prior to each chemo treatment.

Thursday started out bad and got progressively worse.  Early in the morning we received a call from the chemo doctor and he gave us some more bad news.  The results of the CT scan of Marge's head indicated a new mass behind her nose and could be causing the nose bleeding.  He wanted us to come in immediately to discuss radiation treatments of the tumor location.  We were scheduled to see the ENT doctor to have the packing removed at 10:30 and told him we be there immediately afterwards.

We met with the ENT doctor and he removed the nose packing,  Then he and Marge's friend Kathy, retired neurosurgeon,  reviewed the film copies of the CT scan I got when they did the scan on Friday.  He thought before we went through with the new radiation he should get a biopsy of the area and arranged it for later that day.  He then sent us to get an EKG and blood lab on Marge before the surgery.  The blood work was to check everything and to make sure that her platelets were up. 

We then met with the radiation doctor and tentatively scheduled the treatments to begin next Wednesday, with the simulation tests scheduled for Monday at 3:30 at the Los Angeles facility.  The chemo treatments were also postponed until after the radiation treatments. 

We checked Marge into Same Day Surgery at 3 PM and got back home around 9 PM after the biopsy procedure.  Just prior to procedure the doctor told us the results of blood work was good.  The really good news of the day was that her platelets were up to 94.  That meant that her system was making platelets again.  The doctor met with us right after the procedure and said that the biopsy of the mass indicated a malignant growth and we should go ahead with the planned radiation treatments.  He said that during the procedure he tried to cotterize some of the places that most of the bleeding was coming from but that she might still have a little oozing.

Friday was a quiet day because the post-surgery instructions was that she was to do nothing strenuous.  Marge's throat was still sore from the biopsy but she was able to eat a little watermelon. The ENT doctor also ordered a suction unit to help remove some of the oozing blood and it arrived in the late afternoon.  Also good news is that she hasn't had to use the oxygen very much.

Tue. - 4/27/04- 4/27/04

Yet another frustrating day dealing with the medical folks.  Marge got up feeling really lousy and still had the nose bleed.  So at 9:30, since we hadn't heard from her chemo doctor, I called the emergency nurse number and was told to take Marge to ER.  We arrived and then spent the next 4 hours twiddling our thumbs for the most part.  They took some blood and the results came back indicating the platelet level was a little higher (52) than the Sunday test results (32).  And although still low, were reluctant to give her a transfusion after they contacted her chemo doctor.

About this time I was beginning to go crazy because, as I understand it the platelet level should be over 100 and they only last about 5 days, and just a week ago we were in the same ER and she was admitted to the hospital and received receive 4 units of packed red blood cells and 2 units of platelets because her platelet level was 30. 

Anyway, the ER doctor wasn't going to do anything else and sent us to the ENT doctor to have the packing checked.   The ENT doctor did a brief exam and couldn't find anything wrong with the packing and said to return on Thursday to have the packing removed.  When we brought up the previous days visit and the statement about needing a platelet transfusion, the medical profession CYA kicked in and he said that maybe the Sunday or latest test results were in error but nothing said about running another test.

So we came home the hospital without anything being done and Marge was still feeling the same and we still had the nose problem.  Shortly afterwards her chemo doctor called and again said there wasn't a reason for a transfusion because her platelet level was coming up.  He also said he'd issued new chemo orders and we should be hearing from the chemo scheduling nurse.

Mon. - 4/26/04- 4/26/04

Another frustrating day dealing with the medical folks where felt like we didn't accomplish much.  The first thing we did is call the ENT doctor because of the nose problem and was told to come in immediately.  The ENT doctor did a thorough exam and could not find the missing packing and thinks it might have been swallowed while Marge was sleeping.  He repacked her nose but said that her latest blood work showed that her platelets were low and that the nose would not completely stop bleeding until she got her clotting level back up with a transfusion.  Assuming that would be done at the chemo clinic, a return appointment was scheduled for Thursday to remove the packing.

We left the ENT doctor's office and went directly downstairs to the basement chemo lab is to talk to discuss the needed transfusion and if they would have to reschedule the chemo treatment.  That's where it really got frustrating.  We were told that yes her blood levels were low but not low enough to require a transfusion.  The scheduling nurse then said she was awaiting new orders from the chemo doctor and that Marge wouldn't have another chemo treatment until she met with the doctor on May 4th.

So we came home and Marge rested to give the new packing job a chance.  We've left a message with her chemo doctor's service and are awaiting a call to discuss the transfusion needed according to her ENT doctor.

Sun. - 4/25/04- 4/25/04

The first thing we did today was make a run to the hospital to do the lab blood work prior to her chemo treatment Monday afternoon.

The rest of the day was relatively quiet day because Marge continued to have the bloody nose problem.  The new nose packing seemed to work and the bleeding slowed down until the afternoon when suddenly the packing disappeared.  Marge didn't think she swallowed it so that means it's probably gone into her sinus cavity.  With the nose still bleeding I wanted to take her to ER but she refused and said she thought she could hold out until she her appointment with the ENT doctor Monday morning.  So she spent time in the recliner chair pinching her nose to see if she could get the bleeding stopped.

Sat. - 4/24/04- 4/24/04

It was a quiet day and Marge continued to have the bloody nose problem.  But the new packing seems to be working and the bleeding appears to be slowing down.  However, the bleeding impacts her appetite because the blood drainage down her throat upsets her stomach and she can't eat.  It also caused her to loose her voice again.  Her friend Kathy came for a visit and looked at the packing and advised scheduling an appointment with the ENT doctor on Monday. 

It was also another medication reaction day.  Early in the morning she took a Benadryl for her sinuses and almost immediately got a rash on her stomach and arms.  She's taken them before without reaction so we investigated what the difference was to avoid the problem in the future.  She had been taking the regular strength Benadryl sinus and headache (green/yellow) gelcaps but the new stuff I picked up was the maximum strength (blue) caplets.

One good piece of news.  Since she had the transfusion and came home from he hospital, she has felt the need to use the oxygen.

Fri. - 4/23/04- 4/23/04

The bloody nose problem is still with us even with the new packing.  Marge stayed relatively immobile most of the day and the bleeding seemed to slow down so with the transfusion her clotting system seems to be trying to recover.

At 7 PM we drove to the Santa Ana facility for the scheduled CT scan of her head.  The scan was completed and we already have copies of the films for her friend Kathy (neurosurgeon) to look at.  However, just prior to the scan procedure when Marge laid down on the table, the nose packing dislodged and she briefly choked on it before coughing it up.  So as soon as the scan procedure was completed we went to the other side of the clinic to the Urgent Care for some new packing to be put back in.  They didn't have the same type as used by the ENT doctor used so we'll probably have to see the ENT doctor early next week or back to Emergency again if the bleeding gets worse.

Thu. - 4/22/04- 4/22/04

The bloody nose problem was still with us when we came home from the hospital and it seemed to get worse with a lot of leakage around the packing they put in.  So back on the phone first thing in the morning trying to get appointment with the ENT doctor.  The one we saw in the hospital was in surgery all day but his office said to come in as soon as possible and the other doctor in his office would look at the packing.  Made it back to the clinic by 9 AM and the ENT doctor removed the packing put in while Marge was in ER, put in another type and said to come back next week or immediately if the problem persisted.  He gave us an explanation of why she was having the problem and is was basically related the chemo drugs, it's impact on the blood system, and the oxygen drying and irritating the tissue in the nose.

As of this evening the new packing seems to be working.  Although she still is having a little bleeding, it's not nearly as bad as this morning and seems to be tapering off. 

An observation from when we were in the ER -- never take for granted the fantastic medical machines are always right and question the medical people if you think there's something wrong.  Just after they started Marge on the first unit of platelets, the took her temperature using one of those units that they stick in your ear.  It read 103.8 and the nurse said they were going to stop the transfusion and do a blood culture because she was having a reaction.  Marge said she didn't feel like her temperature was up and found it little hard to believe that it had gone up that much in just an hour since they first took it when she was admitted.  So she insisted they recheck it again using the old fashioned type of thermometer.  Surprise, her temperature was normal and they continued the transfusion.

Another observation, since all her transfusions and leaving the hospital, she's been able to go without her oxygen.

Wed - 4/21/04- 4/21/04

This update actually covers the period from 9 PM Tuesday to 1 AM Thursday.

The bloody nose problem worsened and could not be stopped doing all the things the doctor said to try.  So, following his instructions, we arrived at the Emergency Room at 9 PM Tuesday.  We expected they would cotterize the problem area and we'd be on our way home in a couple of hours.  Not!  The ENT doctor was called in and he just packed her nose because of other things happening.

When she was admitted to ER they drew blood and the lab results stirred them up.  First, the said she needed blood and would be admitted to the hospital.  Second, the ENT doctor could not do anything because she was not clotting.  Third, there wasn't a bed immediately available in the hospital so they would start the transfusion in the ER. They said she would be getting 4 units of blood - 2 platelets and 2 packed red blood cells, and they started with the platelets around midnight.

After they had just started her first unit of packed red blood cells (around 3 AM) a bed became available in the hospital and she was moved there.  At 6 AM they started her second unit of packed red blood cells and then around 11 AM she was given her second unit of platelets.  We expected she would be released in the early afternoon as soon as she had received the 4 units and they had run another blood work to see that everything was ok.  Not again! 

They still didn't like the results of the blood work and decided she needed another 2 units of packed red blood cells.  After those two units and the blood checked again, she could go home.  Then we waited until 4 PM when the first unit was started.  At 8 PM the second unit was started and when that was finished the lab folks came in around 11 PM to draw blood.  Then we held out breath until the nurse came in shortly after midnight and said the results were ok and Marge could go home.  We left the hospital at 1 AM on Thursday.

Through the day while all the above was going on, I was on the phone calling the various doctors and the chemo clinic to cancel or reschedule.  The chemo treatment was changed to next Monday and she first has to have another blood lab on Sunday at the hospital.  He chemo doctor said that because of the blood problem, they might change the chemo drugs or reduce the amounts given.  The ENT doctor appointment was scheduled for Friday to have the packing removed and possibly cotterize the area in her nose.  The CT scan of her head is still on for Friday evening.

Mon. - Tue. - 4/19/04- 4/20/04

Marge continues to experience most of the symptoms (nausea, vomiting, dizziness and lack of energy) associated with the new chemo drugs.  On the good side, the nausea and vomiting have diminished.  Also on the good side, with the new drugs she's regaining the feeling in her hands and the "burning" in her feet is gone. 

However, an old problem has gotten worse in the last few days.  She's been having bloody noses and in the past they believed it was associated with a sinus infection.  In the last week the problem has worsened and the last few days is was almost constant.  Last night she barely slept because of the drainage into her throat and that resulted in coughing.  We called and made an appointment with her chemo doctor this morning after when it would not stop and she had lost her voice due to the irritation.  After the doctor examined her nose he said he believed condition was due to the dry air from the oxygen machine and ordered a humidifier attachment.  He also said if it got worse to immediately go to the emergency room.

We also talked to him her lack of energy and about the transfusion or resuming the Procrit.  Again he said the blood work indicated it was not doing as they had hoped and the only alternative was a blood transfusion.  Surprisingly, he said it was scheduled and we should have been notified.  So after we left his office we went to the chemo lab to talk to the scheduling lady.  She said she had called and talked to someone our house (news to both of us), the transfusion was scheduled on Friday at noon, and it would take 4-6 hours.  Since Marge also has a CT scan scheduled at another of their facilities about 20 miles away at 7 PM, it's still not clear if we should try and reschedule that appointment.

Fri. - Sun. - 4/16/04- 4/18/04

I spoke too soon about Marge not having any problems with the new chemo program. Since the Thursday update she's experienced all the symptoms (nausea, vomiting, dizziness and lack of energy) associated with the chemo drugs they're giving her.  She tried working on one of her quilts but that only lasted about half an hour.  With the exception of making it out to lunch one day with one of her friends, she hasn't been able to do much of anything else. 

Tue. - Thu. - 4/13/04- 4/15/04

Tuesday was a nice day for Marge because she and four of her quilting gal friends went our to lunch and then to a quilt shop looking at fabric.  She came home tired but relaxed because the outing took her mind off the news of the previous week.  Wednesday was a relaxing day except for the trip to the lab for blood work.

Thursday was the chemo treatment #1 of the new program.  She went through it without any problems but we had some disturbing news as a result of the lab work.  First they discontinued giving her weekly Procrit injections because they said it didn't seem to be doing any good and her platelet count was low.  That means we'll probably be looking forward to transfusions but we're awaiting to hear from her chemo doctor.  Also disturbing was her white count was up but that may be because of the steroids in the meds she's getting.

Sat. - Mon. - 4/10/04- 4/12/04

It was a rough weekend after the news on Friday.  But we're not giving up and this morning I called and got the schedule for the new chemo treatments.  They will begin this week and we'll be using her scheduled appoint time on Thursday for the next 6 weeks.  They are also scheduling weekly blood lab work the day prior to the treatments.  On the 23rd they've scheduled a CT scan of her head to see if they can determine the cause of the severe headaches and bloody noses.

Tue. - Fri. - 4/06/04- 4/09/04

Marge continued to improve after her last chemo treatment.  She still has some pains but they've now given her something for the "burning" in her feet.  The oxygen situation is the same and she can still only go without it for a couple of hours.  

Friday morning we met with the doctor to go over the results of the Monday CT scans of her lungs, abdomen and pelvis area.  The news was not good.  The scans indicated the radiation and chemo hasn't seemed to have done much good and also found three new additional tumors.  After reviewing the treatment options, next week or the following, she'll start a new chemo treatment program of treatments every week for six weeks and then two off.  

We're not giving up but with the way the cancer has spread in such a short time and the way it hasn't been responding to the treatments, the possible cure does not look as positive as in December.

Sat. - Mon. - 4/03/04- 4/05/04

Not too much to report.  Marge continued to improve after her last chemo treatment.  She still has some pains where she had them before but the latest addition is a feeling of "burning" in her feet.  The oxygen situation is the same and she can only go without it for 1-2 hours.  

Monday morning she had CT scans of her lungs, abdomen and pelvis area.  We'll be going over the results of these scans with her doctor on Friday.

Thu. - Fri. - 4/01/04- 4/02/04

Marge continued to have pains in her back, big muscles, knees, ankles and hands but it seems to be decreasing.  She also still has the sinus infection but that's also getting better.  The oxygen situation is about the same and she can only go without it for 1-2 hours.  Her attitude was helped by making a fabric stash run with one of her girlfriends.

Friday was supposed to be the day of the CT scan to check the progress of the treatments.  But a couple of events happened that resulted in our not getting this information until the end of next week.  First, the scan was scheduled at the Anaheim hospital instead of the Los Angeles hospital where it was done before.  This means that the results scans would be sent to the specialist in LA to be read and then his report sent back to the Marge's chemo doctor for him to go over with us the end next week.  Second, at the last minute the CT was rescheduled for next Monday.  We had arrived early for the scan but after waiting 45 minutes past our scheduled appointment time, they told us the CT scanner had just gone down and we'd have to reschedule.  It was then we got another surprise.  Those that had to drink the special stuff for scans were being sent to another hospital for their scans that day.  Our surprise was that Marge was in this group.  However, she had not been given any of the stuff to drink and it was not required for scans of the lungs.  Some time in the last month since we scheduled the CT scan of her lungs, the orders had been changed for a much more extensive scan.  But that information was not passed to us and we were not given the stuff for Marge to drink.  So even if the scanner had not gone down they wouldn't have been able to do everything that day.  Anyway, the CT scan was rescheduled for next Monday morning and we were given the special stuff for Marge to drink before the tests.