An Experiment

Matthew's platelet count was low Monday.  It was around 70 (remember 100 is the goal).  Another factor is Matthew's platelet clumping, which causes his counts to be a bit off.  The doctor decided to try something different.  They decided that if they kept up with this pattern Matthew's chemo would never finish, and not do any good.  They decided to try him on the chemo in combination with the medication to help increase the platelet count (which is actually a steroid).  So far, he is doing OK.  He said he has had no major reactions, which is a good thing.  He did sound really tired though.  On the upside, he won't have to have chemo next week, so hopefully he will feel pretty good for his Christmas visit. 


Matthew has appointments at MD Anderson later this week.  I will keep you posted when I know more. 

Here's hoping the Christmas season is treating you well!  

Another Low

Matthew's platelet count was too low for chemo again yesterday.  All of his blood counts were on the low side, but his platelet count was 40.  They have put him back on the medication that is supposed to help bone marrow production of platelets.  He will go back and try again next Monday.  These little platelets have got to stay up so he can do his chemo!

Thanks for the prayers.

Round 1 Take 2

Matthew's platelet count was 100 (which was the bottom limit) for chemo, so he started this morning.  It went well as far as chemo is concerned.  His other blood counts were up too, which is good.  He took his nausea meds, so hopefully that won't hit him too hard yet. 

He finishes this round on Wednesday...traditionally, Wednesday and Thursday have been the hardest days for him.  Hopefully this round will be relatively easy.

Thanks for the prayers.

Rising to the occasion

So, its been a couple of weeks since I have posted.  The last post said Matthew was starting chemo.  Well...he went in on that Monday, and his platelet count was too low.  I think everybody was surprised because it had been high enough just two weeks earlier.  Apparently this can be caused by a couple of things.  Chemo can, and frequently does, short term damage to the bone marrow.  Damaged bone marrow does not produce platelets as well. Surgery, even without a lot of bleeding, can also cause low platelet counts.  In addition, Matthew has a condition referred to as "platelet clumping."  This means that his platelets clump together, and while it does not affect how well they work, it does make his counts inaccurate (usually lower).  Matthew has been on a drug that helps increase the bone marrow production.  He was checked last week, and it had increased, but not enough.  Hopefully, it is high enough when he goes in tomorrow.

Because of the chance of starting chemo tomorrow, Mom cooked a Thanksgivingish dinner today so that Matthew can enjoy it.  (We have heard that chemo is worse when your platelets are low).  Matthew is not looking forward to chemo, but at the same time, he needs to get through it. 

I will try to make sure I update with the results tomorrow.

More Chemo

Yes, more chemo starts tomorrow following the same schedule as before (in-office treatment on Monday, and he goes home on a pump for two more days.  That's the not so fun part.  Starting tomorrow also means that he has to take chemo the week of Thanksgiving.  :-(  His platelet counts were a bit lower than they would like, but they have decided that they would prefer he start and take a break if his platelet counts get too low. 

However, there is a good news.  Matthew saw the doctor at MD Anderson today.  The doctor came in smiling.  The blood test that checks for cancer markers came back at .9--the doctor said that is usually a really good sign. 

Mom reported that Matthew seems to be doing better.  He has been going to the gym, and the doctor is allowing him to do more, but gave him some strict limits.  Matthew has been up and about more as well.  Here's hoping for minimal side effects from the chemo this go round. 

Cancer Humor: 

What do you call a doctor who is always on the telephone?

An ON-CALLogist.

Surgery Notes

Matthew visited with the Oncologist last Friday.  We got a bit more information from his surgery, partly due to getting a copy of all the surgical notes. Here is some of the information.  Some of it might be a recap.
1)The liver tumor was removed with clean margins.  40% of the cancer cells were dead.
2) They removed several lymph nodes, all of which, were clean
3) They found a nodule on his diaphragm that came back as cancerous.  The type of cancer was adenocarcinoma and was a metastasis of the colon cancer.  They removed this nodule.  I found that the difference between a tumor and a nodule is the size (this was pretty small). 
4) His gall bladder was clean, but they removed it (maybe it was in the way?).

He is starting to gain a bit more energy, but still tires very easily.  He actually went out on Saturday evening and spent some time with friends for the first time since the surgery.  Jeffrey and Stephen spent 4 days there last week (and then stopped to visit us), which Matthew seemed to enjoy. This also seemed to lift his spirits a bit.  

The doctor said that he should be ready to start chemo in just another week or so, however, he told Matthew he could wait a couple more weeks if he didn't feel ready yet.Right now, he is probably going to start chemo the week before Thanksgiving.  His chemo will follow the same pattern as last time.  He will do a large dose in the office on one day, and then go home with a pump for two more days.  This will repeat every other week for 4 months. 

Next week is our Dad's birthday!  He has a Halloween birthday (fitting right?) .  In honor of his upcoming birthday, and all the fun that is Halloween, I thought I would share this bit of fun.

Taking a Beating

Matthew has taken a beating today....but not from cancer.  This is a picture of Matthew with our friend Cindy's daughter (on the right--and her friend).  

He continues to improve.  He is still tired, but is improving.  Once he is completely healed he will have to have 6 more rounds of chemo.  

Emily has been visiting this weekend, and Jeffrey and Stephen are on their way into town.  Matthew has been enjoying the visits.  I will update when we know something new.

Chopped Liver?

Chopped liver?  I think not.  Matthew's liver is a Rockstar!  Tests show that it has already regenerated to 80% of full size.  This is in less than 3 weeks, and they were expecting it to take more like 6 weeks.  The biopsy of the liver tumor also showed that 40% of the cancer cells were dead.  This means that the chemo being used to treat the cancer is working really well.  

The one downside of his tests showed that his liver cavity is still not fully drained.  Furthermore, it has not drained evenly, so he had to go in today to have the drain repositioned.  This was a minor procedure, but still took most of their day.  However, when I talked to Matthew he was in pretty good spirits.  He said he was a bit sore, but nothing too bad.  

We are really pleased with is progress at this point.  Hopefully there will be even more good news to come soon.

Still Healing

Matthew has been home for several days now.  He is doing OK.  He is off of pain medication, which was tough.  He still has a drain in, which is draining about an ounce a day (yuck!).  He has also been giving is own heparin shot on daily basis.  Apparently this is very uncomfortable, and causes a burning sensation.  Before he left the hospital , they removed a couple of staples from his incision.  This is an open wound that he has to pack on a daily basis.  He has been very tired, and has spent very little time up and around.

He actually returned to MD Anderson today for a CT scan and more tests.  These are to check how the drains are doing, and to check other progress.  I am guessing we will get some results tomorrow.

I will post as soon as I have some more information.

This little piggy

This little piggy cried, wee, wee, wee all the way home!  Matthew is home.  I spoke with him in the car, and he sounded tired, but glad to be headed home. He has to go back in a couple of days for scans/tests/ etc.  He will have to have his tube removed, and his journey isn't over.  However, I believe this is a good place to stop, give thanks, and celebrate a bit!

There were definitely some Angels involved....knowing Matthew, what other kind would they be?

No need for a plumber!

 Dr. R. came about noon and did a leakage test on his drains. Basically she pumped fluid into the bottom drain to create a positive pressure there and pulled a vacuum on the top drain. It was important that there was no leakage between the two and if there was the pressure/vacuum would create a flow out of the upper tube. Good news – no leakage. His bowels have also shown some small signs of waking up, GROSS, but important. So, it looks like Matthew may get to go home tomorrow!

 

She then took out his staples and then the upper tube. Despite a pain shot just before starting all this, the tube removal was a pain level 10. Matthew will go home with the bottom tube still in place.  The remaining light has to be flushed once a day (squirt a syringe full of saline back up the tube).  He will have to come back in a week to get it removed. He will also need to have a heparin (blood thinner) shot once a day.

Here is a picture of his MD Anderson approved birthday cake....he looks thrilled doesn't he?

 

Mixed News

We had a video chat yesterday with Matthew for his birthday.  He actually seemed to be in pretty good spirits.  He was making jokes and trading silly faces with the kids.  That was really good to see.  He said he even got some MD Anderson approved cake.  I shared each of the birthday wishes for them, and he was very grateful and appreciative of them all. 

The CT scan results were not the best.  They scanned the two "pools" that were being drained.  The lower pool still showed a "residual blob" of old blood from the first surgery.  This will not drain very well.  The doctor may decide to try to flush the area by pushing saline through the drain into the cavity.  However, that is still undecided.

His bowel is not quite functioning yet, but the scan suggested that they may just need to try a larger dose of milk of magnesia.

The chest x-ray was not completely clear either. The bottom of one side did not look fully inflated or clear.  They want Matthew to use his Spirometer (this little tube thing you have to blow into) more frequently to exercise his lungs.

On the plus side, they were concerned about his bladder being enlarged, but the scan on that came back fine. His morning vitals were good.  His oxygen levels were running around 90% but they were up to 97%.  His pulse, which had been in the 120s, was down to about 86. 

He also attended Mass in the chapter this morning.  He walked down to the chapel on his own, which is probably as far as his usual walk around the 5th floor. However, he also was able to make it back about 45 minutes later. He was able to do this without having to take a pain pill right before the trip.

His overall pain levels seem to be down, and his spirits are better overall.  Mom reports that other than the walk, today was also the first day that he felt "up to" watching TV.  

Hopefully, tomorrow will bring some more good news.  

Will it be happy?

Today, we don't have any major news.  However, over all, things seem to be moving in the right direction.

First, Matthew got to lose his catheter today.  One less tube!

Second, although he is not fever free, it does seem to be trending down.  His temperature is not stable, but was 98.4 around 1pm, 100.5 at 3pm, and 98.4 at 8pm.  At least it seems be trying to move down.  None of his cultures (and they culture everything), is growing anything.  So the temperature is a bit of a puzzle. His pain also seems to be down a bit.  He was on the maximum dose of his pain pill every two hours and a pain shot every four hours. Today at 1:00 he had only had 1 pain pill and 1 shot since 4:30 in the morning.  He is still having some spikes of pain in the 8 to 10 level on the pain scale, but overall it seems better.

His chest x-ray today looked good.  He is scheduled for a CT scan tomorrow.  The drains have slowed to a trickle, so it is possible they may decide to pull one after the scan tomorrow.

They are losing one of the doctor's on the case, as she is rotating to a different unit.  Hope that her replacement is just as good!

Although Matthew seems to be improving, his mood is not.  He seems to be running low on emotional reserves.  Tomorrow will be his 33rd birthday.  I will be more than happy to share any wishes, forward any emails, etc.... from anyone that has birthday wishes for him.  I am sure that his main wish is to feel better and get out of that joint!!

Emily sent this to me yesterday, and since then, I have seen it on several people's Facebook pages.  So forgive me if you have seen it, but it seems kind of appropriate right now.  Today's improvement makes us hopeful that tomorrow will be better (and Happy!)!

Afternoon Update

I got most of this information from my Dad earlier this afternoon.

Dr. A came by at 1:00 PM.  Dad wouldn't accept a simple “We have to wait and see” answer.So he got him to be explicit about the decision criteria associated with the tubes.  This is the information from that conversation.

First, the two tubes are in different places, one above and one below the diaphragm. The tubes did what they were supposed to do – a big initial gush followed by a slow trickle.

One of the tubes is in the liver cavity. What we have to watch for on that one is for a greenish fluid – bile. The bile watch will go on for about 3 days.  The bile complication rate is low, 1 in 20. And even if he gets a bile leak it can usually be fixed endoscopically, no need for another slice and dice.

His fever went down to 98.6, but now has returned to 101.1 and  his heart rate had decreased as well.  His heart rate had come down to 95 while resting, but currently is still sitting around 125.  This is my nonprofessional input, but I am sure the stress to his body, pain, fever, etc...is driving his heartrate up.

I thought a little humor might be helpful...this what all the nurses say...

Yuck!

Matthew came out of his procedure with not one, but two drains.  Some of the update below is from earlier today...

Mom talked to Dr. A (the chief surgeon) a little before Mom and Dad swapped at 5pm, and Dad talked to Dr. R (his other surgeon) earlier this evening.

The drainage tube team did a complete CT scan before starting and then did the procedure while he was in a CT machine. The second drain tube was a surprise. I asked Dr. R. about it and even she didn’t know for sure exactly why the second was inserted because the drainage team (a drainage team...yuck!)  hadn't entered their case notes yet. It could have been because they spotted some additional fluid accumulation outside his lungs, or it could have been because the fluid accumulation was so big that they wanted to drain it from both the top and bottom. Dr. R. did say that neither of the drainages looked like what you usually get from around the lungs. And right now the upper drain bag is way ahead of the lower drain bag – 400 ccs to 200 ccs.

Matt is still uncomfortable but is still doing a lot  better than on Monday. His biggest pain issue at the moment

is hic-ups. And this afternoon he finally got a therapist to do a back massage. I had been pushing for that since

Monday. His back muscles were cramping  up so badly that his back hurt as much as his front. But the setup for this is a little weird. The therapists that can do this are actually on the MDA staff, but treating surgery patients is outside their official duties and they do the surgery patients voluntarily when time is available.  I guess we can’t complain to much about that since back massages aren’t routinely part of post-surgical care (or even needed i n most cases).

For the procedure, Matthew was sedated to the max you can be and still be conscious. The relatively high sedation level was necessary in case they had to add a breathing tube (he didn’t need one). Matthew reports that  he had a pretty vivid dream/hallucination  as he was coming out of the procedure. He was in the car and we were driving up here to MDA – but we had some parrots with us! And they were eating worms (or maybe grubs).

The discharge time line depends on how quickly the drainage dries up. They will probably not pull both tubes on the same day, though.

I spoke with my Dad a little while again.  He reported that overall, Matthew seemed to be a bit more comfortable.  However, he was having spikes of pain.  The drainage (I know yuck!) had slowed quite a bit.  My dad said that they pretty much all feel about like the cartoon below.