How We Were Almost Arrested in France

The holidays are over.  The doctors want to do a second round of chemo only this time they are adding a new drug - Fluorouracil (5FU).  This is an old chemo and has been very successful in the treatment for non-small cell cancers.  The doctors were so very pleased with Joe’s condition and his continued improvement from the chemo and radiation in the fall.  They felt they had gotten it all with the very aggressive treatment but this was maintenance.  Like I said, make sure none of those little cells had escaped.

The one thing different this time was Joe had an extreme allergic reaction to the drugs.  I am going to share in this blog parts (parts that are not included have no impact on the “story”) of the emails sent the end of January thru February.  I will let them tell the story. 

Please note – this is very long because it covers 21 days of sharing  information.  Twenty-one days in which Joe traveled the complete circle of life.  Parts are intense.  Parts are sad.  Parts are medical but they were our life for 21 days. 

January 19, 2007

The week that started out with Joe feeling great has ended with him feeling not so good.  There is this word - blicky - bad, sick and yucky.  That is what he uses to describe how he feels.  He is experiencing mouth dryness and sore throat (after FINALLY getting over all of that from the radiation), achy joints and some mild skin irritations.  Basically flu like symptoms.  Remember - he is receiving 3 chemicals, doubling the amounts, in his treatment this time PLUS the Neulasta shot which has as many side affects as the chemo does!  He has not indicated this, but I am sure that this also is depressing him because he was feeling so good having recovered from the last go round. 

January 20, 2007

As I mentioned in my email this AM Joe was dealing with some sore throat and swelling issues.  After he was up for a while, he could hardly talk and he sounded as if his throat was swollen shut and his neck was itching very badly.  These are both side effects from the Neulasta and it says on the instruction sheet to call the Dr. immediately, so that's what I did.  He answer ====take him to the ER now.
 
So, five hours later, we are back home with Joe shot full of antihistamines, steroids and antibiotics with a neck much less swollen.  Apparently he had an allergic reaction to the drug.  The information said that is a sign that the white blood cells are multiplying faster than they should.  I don't know, I just read.  

January 23, 2007

Joe was admitted into Chandler Regional Hospital this afternoon.  His oncologist thought he would get better quicker if he was admitted and Joe agreed with him.  He still can't talk and he ranks his mouth, throat and neck pain as an 8.  

January 24, 2007

When I left the hospital last night Joe was ready to fall asleep in his room.  You gotta love those narcotic drugs!  He has not slept well since all of this started on Friday so hopefully he slept most of the night and remained pain free. 

Dr. S. (medical oncologist) told us yesterday that the x-rays of Joe's throat did not show any swelling so what he feels is going on is that the ulcerated sores in his mouth are going all the way through his system.  Down his throat, respitory system and into his digestive (causing the diarrhea).  No one has been able to actually look down Joe's throat because he can't open his mouth.  Dr. S. feels it's a breakout side affect from the 5FU.  The most serious thing going on right now is Joe's white blood count.  It is supposed to be a count between 4.0 and 11.0.  At 3 PM on Monday his count was 0.2. 

January 25, 2007

I am sorry to say that the update for Joe this afternoon is not a happy one.  His white blood count is still 0.1 but his platelets have dropped to 8.  (Should be between 110 - 450.)  His oncologist has ordered him to be started on platelet transfusions today.  He has been checked from one end to the other for infections and he is infection free so the extremely low counts are from the chemotherapy.  He is taking a drug that he has to swallow for all the ulcerated sores in his mouth and throat.  The pain problem with that is he can't swallow so when he takes this he is in excruciating pain because it burns.  His internist ordered some lydicaine that will take away some of that pain.  He is also now having to have insulin shots because the glucose they are giving him to hydrate him has raised his sugar levels too high.  He currently has hanging on his IV pole 6 different bags of drugs that range from the TPN, lipids, glucose, antibiotic, antacids and the platelets.  Except for the first night at the hospital, he has refused any pain medications.  He does not like the way he feels and it doesn't really do anything to stop the pain in his mouth.  He can not even swallow his own saliva so he is up and down a lot spitting and going to the bathroom because of all the fluids.  What a vicious cycle that is!!!!!

I am planning on spending the night at the hospital tonight with him because I honestly am afraid that he will fall with that IV pole when he has to go to the bathroom. 

He is so tired and in so much pain and I feel totally helpless.  I honestly can't see much, if any, improvement from the first day there.  His oncologist has said that it will take a few days for these meds to take affect.  He is just totally shocked at Joe's bodily reaction to this therapy after he was so successful with the first 7 weeks.  Joe is very comfortable with both the oncologist and his internist.  They really are doing everything they can to get him over this.

January 26, 2007

I left the hospital this morning around 6:30 to come home and Joe was feeling much much improved from yesterday afternoon.  Apparently while I was sitting here writing to you all about the pain he was in, he was having a conversation with his oncologist and just that.  Dr. S. walked in and was outraged to see him in so much pain.  He had ordered 24/7 pain management and that included other drug than the one Joe did not want to take.  Apparently the nurse indicated that Joe had refused pain medicine (not necessarily true, he (we) asked about 20 times for the lydicaine for his mouth).  Dr. S. then brought the doctor into the case and the room who is head of pain management for the hospital.  Let's just say that after a lengthy conversation, Joe is no longer in pain.  He is talking much better and sitting up and trying to swallow water. 

They did his first platelet transfusion last night around 11 PM.  Since I was there, I got to watch him to make sure he did not have any reaction to the platelets, and he didn't.  I am not sure how many of those he will need but Dr. S. did say yesterday that he will be there at a minimum of 4 more days.  That is IF he can swallow and IF his blood counts are back in the acceptable range.  He was given a shot of Neulasta last night also to stimulate the white blood cell growth.

January 27, 2007

Not a lot of "new" news today.  Joe's platelet count went up to 33 yesterday following the platelet transfusion Wednesday night.  Dr. S. is going to wait a couple of days to see if it continues to rise, and if not, another transfusion.  No change in the white blood count.  He did have his 2nd injection of neulasta.  We THINK that they finally have the right combination of pain medications so that he doesn't have such a reaction swing.  Yesterday morning Joe was up in a chair, reading the paper and talking as best he can but by 2 PM he was crashed in the bed in discomfort and was there the rest of the day. 

January 27, 2007 (PM)

Joe has not had a good day today.  The doctors are really struggling to get his pain under control.  The medication for pain relief dries his mouth out and that causes a lot of the pain, so he is trying to cut the amount of pain relief way down and use a topical rinse on his mouth.  So far, it's not working too well, but it could be too early to tell.  White blood count is up from 0.1 to 0.2 but his platelets have fallen (again) from 33 to 19.  The internist is trying a different combination of insulin in his TPN so he won't have to have insulin shots.  I think we are back on that roller coaster ride.

January 28, 2007

Platelet count was down to 8 so they transfused again this afternoon.  White blood count is still 0.1.  He's had 3 shots of the neulasta so still waiting on those to kick in.  It appears that the doctors have gotten the pain levels leveled out somewhat.  When they took Joe of the one oral medication that he had to swish and swallow, it really improved his pain in his mouth and throat.  With the new one he is already noticed a decrease in the swelling on his tongue and throat.   I feel that right now, he is just tired of fighting this.  He did request a shot last night to help him sleep and it did.  He did ask me to buy him a white board tonight so he can quit writing on paper.  Hmmmmmm Joe and a white board.............do I see an improvement there???????? 

January 29, 2007

Joe had a not so good today.  He started running a low grade fever (99.1) this morning and it spiked to 102 late afternoon.  They quickly drew blood to run cultures, chest X-ray upgraded his antibiotics and gave him fever medication.  Around 7:30, he threw back the covers and asked me to turn on the air conditioner.  Sounded to me like his fever broke and shortly after that the CNA came in to take his temp and it was back down to 99.  

We had a long talk to Dr. S today and he told us that actually Joe is right on schedule with this level of toxicity he is experiencing and by day 12 - 14 it should all be out of his system.  (today was day 11.)  He also said that as soon as his blood count starts up, the mouth sores will heal and he will be on the upswing.  Hurry up day 14!!!!!!!!!!

January 30, 2007

Today was day 12 so the healing process is beginning.  He and Dr. H both said that the fever was "probably" because the white blood cells are starting their recreating process and that a high fever usually peaks right before.  They both had a longer more scientific explanation, but, that was the highlight (the only one that matters!).  Joe took a walk around the floor 2 times today.  That was the 1st time he's done that since the day after he was admitted (last Tuesday).  He's got a way to go but, again, Dr. S. says that once those cells start reproducing the healing quickly happens and the energy comes back and his platelets will go up and his mouth and throat will heal. 

January 31, 2007

Joe had to have his 3rd blood transfusion last night.  White blood count is still only 0.2.  I knew that Joe had lost weight but did not realize how much until he was weighed this morning.  He weighed in at 140.2 pounds.  Last Tuesday when he was admitted, he weighed 160.  They are giving him 2,000 calories a day with his TPN and lipids, but obviously that's not enough so they are increasing the lipids.  Dr. H. said today that when his blood counts are in range if Joe still cannot eat because of his throat irritations, they will put the feeding tube back in.  Joe was not happy to hear that but he understands.

I did ask him today if he was OK with the care he was receiving or did he want me to try to get another (different) doctors and he said(wrote) no.  He trusted both his internist and his oncologist very much.

And on top of all of this, as if this wasn't enough, he has broken out in a rash all over his back and chest and stomach.  The infectious diseases Dr. thinks if might be a reaction to the 5 different antibiotics he is currently taking.

February 1, 2007

Not a whole lot of changes today, but that also means he's not worse.  When I came in this morning he asked me to go buy him a razor and shaving cream when the store opened.  I took that as a real positive sign.  He was sitting up in bed during the morning time after his shower and visited with a couple of friends who stopped by but by lunch time, he was dozing and on the still and quiet side.  Blood levels are still the same but his mouth sores are a "tad" bit better.  Dr. S. explains that the white cells are reproducing but his sores are using up the cells to heal quicker than his blood can get them. 

February 2, 2007

I can't believe that today marks 10 days that Joe has been in the hospital.  It is possible that he might have made a change toward getting better today.  His white blood counts have gone up to 0.5 and his platelets have gone up to 32 (from 18 yesterday) without a transfusion.  His drs. keep saying his mouth looks better - an opinion that Joe DOES NOT share with them.  Again, Dr S. emphasized that the creation of the white blood cells are being used up quickly in the healing of his mouth and throat so the fact that that area is getting better AND his count is going up is a positive sign.  I am trying hard to not be over optimistic about these numbers today, but it does fall in line with the time line Dr. S. drew on the first day.  Today is the 14th day since his last chemo, so, with that said.............I guess maybe we can be a little relieved.  Dr. S. told me today usually once the numbers start on the upswing, it is very quick (48 hours or so) until the counts are back in the normal range.  Of course, that will depend on how much of those cells Joe uses in the healing of his mouth. 

He still feels very tired and is trying to take the walks but it really does take a lot out of him when he does.   The white board is working out beautifully.  I have to smile when I walk in walk in his room every morning and he has drawn me a flow chart or a calendar or a time line of the past night. 

February 3, 2007

Well, it was bound to happen.  Joe has pneumonia.  When they were checking his vital signs this morning, his pulse oxygen level was 83 and he was having irregular heart beats.  They did a chest x-ray and discovered the pneumonia.  They did catch it very early and are treating him with oxygen, albuterol treatments and ANOTHER antibiotic. 

On the good side, his white blood count went up to 0.9, which is a 80% increase.  His platelet count is at 44 which is a 28% increase.  So it would seem that he is on the mend there.  He is also using much less of the lidocaine and the medicated mouth rinse which indicates that the sores in his mouth and throat are healing.

We will get through this, we will get through this, we will get through this.

February 4, 2007

Today - good news and bad news.  The good news is Joe's blood counts went way up.  His white blood count is 2.9 (should be between 6.5 and 10.0) and platelets went up to 88 (should be between 110 and 450).  The bad news, his pneumonia got worse overnight.  His oxygen level was down to 83 and he was running a temperature of 101 so they moved him to ICU. On another good note, the sores in his mouth and throat seem to have improved and the rashes he had are all gone.  I hate to think what he might weigh now but I am guessing in the 135 range. 

February 5, 2007

Joe's White Blood Cell Count this morning was 6.0 and his platelet count was 108.  Those numbers sure look good to me.  He is having a blood transfusion later today because his hemoglobin was low.  His lungs are clearing up according to the X-rays but every time he removes his ventilator to cough his oxygen level starts dropping immediately.  The drs. are still working on that one with the albuterol and medication.  He is in a bed that has a messaging unit in it so every 60 minutes he gets his lungs pounded.  It sounds horrible when it does it but he seems to like it, and it's working on his lungs so that's all that matters.

February 6, 2007

Let's have a drum rollllllllllllllllllllllllllllllllllllllllllllll

white blood count - 9.6  (6.5 - 10.0 normal range)

platelets - 148  (110 -450 normal range)

Now,  even after 2 units of blood last night, the infection just won't go away.  They are now thinking that something in his portacath is harboring an infection.  They did some testing on it this afternoon to make sure it was seated correctly.  It's not, but that's not what is causing the infection.  They were concerned (again with the concerned) that maybe an infection was not allowing blood to be drawn through the cath.  Joe and I both explained that no one has EVER been able to draw blood, but, they needed to verify that.  Dr. S. is pretty insistent that Joe start trying to eat and drink bland liquidy foods.  He feels that since Joe has not actually eaten in 18 days his intestines don't have anything to allow normal bacteria growth in his digestive system and that "could" be causing the infection in his system.  I think it's a safe statement to make at this point that "THEY DON'T KNOW"!

February 7, 2007

Today I was met at the door to ICU by the hospital clergy asking if we had pastoral support because it did not look good for his outcome today. When I walked into his room this morning I felt so helpless just looking at him.  Today was the first day that he's been in the hospital (15 of them so far) that I just felt like sitting down and crying.  I just thought he looked so much worse than last night when I saw him.  Please don't feel bad for me, my feeling are NOTHING compared to what he is going through. 

After lunch I came back and all of his doctors were there (except Dr. S.) and this is the latest update and procedures.  All of his blood cultures came back normal.  There is no infection in or around his heart.  By the time I get back today he will have had a feeding tube inserted into his nose going into his stomach and a pic line inserted into his arm.  Sometime between today and Friday his portacath will be removed and a feeding tube will be re-inserted into his stomach.  The Drs. think that once he starts eating and creating "good bacteria" the "bad bacteria" will not be able to create as easily. 

One good thing - he is no longer neutropenic!!!!!!  His white blood count was over 10 and his platelets were 280.  But he is still in ICU and only immediate family (and clergy) are allowed in.  Hopefully by the end of the week he will be back in a regular bed and up to seeing his visitors.  They are keeping him pretty sedated and he is still very tired and sleeps most of the time.  Not much of a conversationalist these days!  So totally NOT Joe.

February 8, 2007

Day 4 in the ICU - I think that Joe has his days and nights confused now.  He's still sleeping away when I get there at 8:30 and around 1 - 2:00 he starts waking up and ready to go.  The doctors are also weaning him off the dilaudid so that is causing some discomfort and irritability. 

They did remove the portacath last evening around 6 and his pic-line is up and running.  In hindsight - on the first day there when they asked him if he wanted one of those (pic-line) inserted and a pain med pump, we would have gladly said yes instead of no, but who would have thought - 17 days later he would still be there. 

As I was leaving the hospital they were taking Joe to surgery to reinsert his g-peg (feeding tube).  That is the one thing that he did not want to happen but there was no way he could leave the hospital without it.  His throat and mouth are almost all healed except for a tiny spot on the right side.  (The same place that he had a hard time healing when doing the radiation.)  They will remove the feeding tube from his nose, I assume today as soon as they have the g-peg in place and know that it's working.  Tomorrow they expect him to return to the 3rd floor medical for a couple of days, until he is walking around on his own.  He is begging for a shower!

February 9, 2007

What a Difference a Day Makes

Never before has that song had the significance as it does to us right now.  Joe is still getting his day sand nights mixed up, but in ICU they never turn "out" the lights and they are in and out and in and out all the time.  He woke up today around 10 AM and he looked great.  His coloring is good and because he was pumped with so much liquid he looks filled out quite nicely.  He is talking much clearer than he has since before he went in the hospital.  He still can't talk on the phone or talk a lot, but it's easy to understand him if you listen. 

When I left to get the girls he was still in ICU.  There are no beds on the 3rd floor where he needs to go.  That's kinda a mixed blessing - he is getting fabulous care in the ICU but he can't get up and walk around and all that there.  The nurses tell him he can't cause there are sick people there!

February 10, 2007

Well, today is day 19.  Who would have thought that 19 days ago, Joe would still be in the hospital?  Joe was finally moved to a bed in Telemetry (used for patients (biotelemetry) who are at risk of abnormal heart activity, generally in a coronary care unit. Such patients are outfitted with measuring, recording and transmitting devices. It's not the same type of room he had before - not as book and not as many Marriott Rewards, but IT'S NOT ICU. 

Joe got up and sat in his recliner chair from 10:30 until they moved him upstairs around 2.  He was one tired person after that, but the sitting up made him lungs much more lose and we was able to cough a lot.

February 11, 2007

Joe sat up again today from around 10 until almost 6 PM.  They did remove the catheter and he is no longer receiving any antibiotics.  The nurses promised him a shower first thing in the morning (that's about all he is asking for right now).  They want to make sure he has a little more energy to stand up in the shower before they let him go.  Tomorrow - we start walking.  He is talking better and is trying hard to eat the wonderful meals of jello, popsicles, broth and juice.  Yum Yum!  He asked me to get him a smoothie today but the want him to be on the clear liquids for a few days first.  Party Poopers!

February 12, 2007

Joe started out the day on kinda funky side.  His doctors met me at the door when I got there and informed me that his hemoglobin was down and he had schedule Joe for 2 blood transfusion.  It appears he lost some blood "somewhere"!  Dr. S. is also a hematologist so I gotta trust him and what he says.  Apparently, having blood counts all over the place is very common after a chemo toxicity reaction.  It has something to do with the low white blood cells and the rebuilding them back along with the pneumonia.  The doctors did say that Joe could have to eat whatever he wants so no more Popsicles, juices and broth.  I believe his dinner was going to be mashed potatoes, gravy and applesauce.  YUM YUM Of course, he can't CHEW anything right now cause his jaw muscles haven't been used in over 25 days.  He really wanted a smoothie from Jamba Juice yesterday and after he got the all clear, I went out and got him a blueberry energy boost smoothie.  He drank (ate) quite a bit of it.  He is still on the feeding tube and being fed that way for all of his nutrition so anything else he can get down is just icing on the cake. 

When I picked up the girlies after school we went to a grocery here that has to die for pastries (AJs) and got Joe his favorite cheesecake but it was too thick for him to get down more than a couple of bites.  When we left him he was lying down and looking pretty tired.

30 minutes later I went back in and he was sitting up in his bed, one leg on the floor, wearing glasses, watching TV and looks up at me and says "Hi" when i walked in.  He then asked for the nurse to get him up and sitting in his chair.  The change after 1/2 of his first transfusion was incredible.  I can't wait to go back at 8:30 and see him after he receives the 2nd one.

They did remove all of this telemetry devices today and he was cleared to go back to a regular medical unit - let's say this all together - as soon as there is a bed available.

Sorry to say - still now shower. 

February 13, 2007

Greetings All:

All is well with the world - Joe took a shower today!  They moved him back to the unit he was in originally (22 days ago) around 10:30 last night.  Seems to me that Las Vegas and hospitals have a lot in common - there are no clocks. 

Dr. S. spoke with me and the hospital case worker (every patient has one to ensure safety) about Joe coming home.  He did say that he had no doubt about the support coming from our large network of friends and family. 

All counts are normal and now it's just a wait, eat, walk, walk and walk routine.  His respiratory people say that the pneumonia is 99% all gone with just a little rattle in the left side so they are continuing the breathing treatments and the pounding.  

His voice is coming back a little stronger each day and he is attempting to eat "something" at every meal. 

February 14, 2007

The Sun Will Come Up Tomorrow

My Husband's Coming Home Tomorrow

Well, the day is finally here.  After several meetings today with the doctors, home health care providers, physical therapy people and occupation therapy people, they are releasing Joe tomorrow.  He will be coming home with a lot of the appliances he has been using at the hospital (oxygen, nebulizer (for albuterol treatments), a walker, feeding tube stuff and my favorite a YAENKER).  I love the younker.   All of Joe's number are fine and they feel he can recover at home quicker than he can at the hospital. 

February 15, 2007

WE ARE HOME