Just another WordPress.com site

Posts tagged ‘Medicine’

More tears…..

More tears today….came out of the blue to be honest. Paul and I were talking about the physical effects his treatment has been having on his body and he says, “not to mention the psychological aspects. I’ll confess, I’m a little worried about Friday” ….Friday? What’s Friday?……his first PET scan. This is where we find out if the new treatment is working.

Paul and I were both surprised when he didn’t have regular scans with his first treatment but his doctor insisted it was ok not to. I’m sure they take everything like his age, health into consideration when making these decisions…..but it did seem strange not to get regular updates on how this was going. Sadly it took a medical complication like a bowel obstruction to show us it wasn’t working.

Anyway, this” before church conversation” of course set the wheels in motion…..almost like pre test jitters……is all this working? Are they even going to really be able to tell from this scan? and of course the one question that weighs the heaviest….what if it isn’t working?

That question alone is enough to send me spinning out of control into this incredibly vivid scene of life without my husband. The awfulness of it is unbearable. And let’s face facts…..it’s a distinct possibility.  Looking at him, standing at the podium at church reading the opening prayer with the congregation…..I am overcome with emotion. Eyes keep welling up and spilling over. It got embarrassing after a while since I sit in front of our entire church in the choir loft. My friend’s hand me tissues but I just can’t seem to get myself under control. Wave after wave of grief, fear, uncertainty…….sigh…..it was a rough service. But I made it through, gathering myself together when Paul went up to sing a jazzy little number about Jesus being the rock in the storm……

But even after a nice lunch with Paul and Daniel and my traditional retreat to the bedroom for my Sunday nap….I still can’t shake it. A little more crying then finally…sleep…..where I wake up with a little more perspective on things. I look around my home, noticeably empty after a successful pre-moving yard sale, and there is no time for tears. There is much to do and time is running short to do them. Packing, organizing children before they leave for summer adventures, more packing, more selling of unnecessary things, home hunting and of course, cancer fighting……always fighting……

 

Advertisements

Thunderstorm Thoughts

We were able to get our son Daniel a Nook for his 14th birthday. He is an avid reader, so much so we have caught him reading under the bed covers on several occasions. How do you punish a kid for that??!!?? Paul was a voracious reader as a youth so it’s nice to see them share that love of reading together ❤ The kids have really made a lot of sacrifices over the years and very rarely complained about it. I was so happy we were able to get them each one special gift.

A few things since my last post. Paul gave some thought and decided it was time to ask the doctor for a handicap tag for the cars. He had an appointment at a hospital and had to park 2 blocks away and it about killed him, especially lugging his briefcase and information packets. He spoke to his oncologist and of course, he was happy to write him the prescription to get them. Paul told him he wanted a temporary one but he wrote the prescription for a permanent one………..

……we discussed it the next day and we both confessed to thinking “does that mean something?”……..

but we decided he writes everyone a permanent one…..right?…yea….let’s just go with that.

 

And Paul bought himself a cane. It’s beautiful carved wood but I can’t help but think “Holy shit! My 45 year old healthy husband needs a CANE?” ….and sadly, the answer is yes…..my husband isn’t healthy….and he needs a cane…..but I keep praying and hoping that a day will come when this is all a distant bad memory. We just keep looking down that road….easily another year long…..to the light at the end of the tunnel. When we will look back and say “wow! That was really hard but we made it!”

 

 

Here we go…..

well, it’s started….I can already see this new chemo treatment is going to brutal. 9 bags of poison, things to combat the side effects of the poison and drugs to help the other drugs stop the side effects….it goes on and on….6+ hours of this at the Cancer Center….he looks wiped…it’s an exhausting day for both of us….him from treatment and me from worry….

he just looks so damn skinny. Anyone who hasn’t seen him in a few months would be shocked. The fact is he is just a shade under 200 lbs. but he looks about 170 to me. Lost a total of almost 100 lbs. He was pretty heavy to start, that is true, but still…..that’s a huge weight loss and my fear is it will continue.

4- 6 months of this. His last chemo treatment was a walk in the park compared to what this is…..4 different chemo drugs…. diarrhea, nausea, weight loss, neropathy (loss of feeling in fingers and toes) not to mention exhaustion…all normal for this kind of chemo.

I keep thinking to myself is “how is he going to do this? He has been battling for over a year already! How is he going to do another 6 months of THIS?” but he will….I have no doubt…..but seeing him suffer kills me…..I remember life before cancer…I look back at those people and I hardly recognize myself…..how different I am today.

I memorize every move he makes. My entire life revolves around his comfort and care. I look for changes in his facial expressions or how he is moving to see if there is any pain or discomfort. I live to take care of him, I worry about him every second of the day and I dread every moment I am away from him. And every now and again, like the last week or so, I forget he’s even sick….then it all comes crashing back. And there will be no forgetting for a long, long time…..

The worry and the fretting is the worst…the constant monitoring I do…listening, watching…..is he sick? is he going to be sick? Is he hungry? thirsty? nauseated? tired?       and if so, how do I fix it? I try not to smother him. It seems to come in waves and he allows me to baby him and he answers my hundreds of questions half of which are “Are you ok?” . Never getting aggravated with me…..never complaining….just his quiet strength.

I know one thing….this has to work…..if this treatment doesn’t work I am pretty sure I will lose my mind. I can tell his doctors have a vested interest here….you can tell they really are pulling for him. He is receiving great care and I just have to believe it is going to work out. There are just too many people praying for us and sending good thoughts to us and believing in us for this not to work…..it has to….and that’s all there is to it.

 

Last time, this round!

Today is treatment day.  It’s an odd feeling that’s hard to describe.  On one hand I’m excited that I’m receiving treatment and doing something proactive to get better.  On the other hand, it’s kind of hard to get excited about receiving Chemo.  The good news here, of course, is that we don’t have to go to San Antonio any more!

Today I want to talk about something that we haven’t really brought up.  The survivability of this cancer.

Practically everyone we’ve talked to has had a different opinion on the survivability of this cancer.  When the doctors lump me in with the patients that have Pancreatic Cancer, it’s pretty grim.  Odds are close to 90% that a patient with Pancreatic Cancer will, even after surgery and treatment, have a cancer come back within 5 years.  When it does it is particularly aggressive.

Here’s the key; I don’t have Pancreatic Cancer.  My cancer is Ampullary.  The Ampulla of Vater is the duct that runs from the pancreas to the small intestine.  In a study I ready by the School of Medicine at UCLA (I may have that wrong, it might have been USC, I don’t remember) only 0.02% of the cancers diagnosed each year are Ampullary.  So what does that mean.  Frankly, it means nobody knows!

Because so few patients are diagnosed with this type of cancer, there is no research done on it.  Not only is it too hard to research because it’s so hard to find test subjects, but even if you do, there’s not enough money to be made in finding adequate treatment.  Cancers like, Breast, Colon, Prostate which are much more common are the ones that get the research dollars.  Don’t get me wrong, I completely understand.  I would direct the monies in the same way.  But the bottom line is that they just have no idea what the real prognosis is going to be so they just lump it in with Pancreatic Cancer.

When I was disqualified for the research study, the doctor running the study told me that patients with Pancreatic Cancer have close to a 90% chance of reoccurrence.  His hope was that with the vaccine he was developing that he might be able to reduce that to only 30%.  I was disqualified because, according to him, my cancer only had a 30% chance of recurrence anyway.  I could completely skew the results of the study.  The bottom line is that they have no idea what’s going to happen.  Nobody has ever taken the time, money or energy to find out.

The other day I was talking to Lisa about this.  I told her that truthfully, I may have 6 months left, or I could have 50 years left.  I believe that’s true for everyone.  There is very little doubt in my mind that I will still be here for close to another 50 years.  Lisa says that’s because I’m the most stubborn person she’s ever met.  Maybe that it.  Maybe it’s just that I have faith that God’s not done with me yet.

…and the adventure continues.

It’s Tuesday morning and today is supposed to be the second dose of my first round of Chemo.  That means that about 9:00 this morning Lisa and I will drive to San Antonio.  Except that it makes for a long day, it’s really not that big of a deal anymore.  I’m a little unsure about how today’s going to work though.  I have a cold.

When I check in to CTRC the first thing they do are blood tests.  The want to check everything and make sure that my blood counts are where they should be before they give me drugs that are going to totally knock them out of whack.  The problem is the Chemo drugs knock down your body’s resistance to infections.  Since I already have a cold, what are they going to do?

A cold is a virus, not an infection.  Maybe they proceed anyway?  Maybe they just pump me full of IV antibiotics to try and kill off all the germs.  Maybe they admit me to the hospital until they can safely give me chemo.  I just don’t know what the answer is.  I guess I’ll know in a few hours.

Some good news!

I know that last week Lisa posted about our delay in treatment.  I got an update on that as well as some very welcome news along with it!

The reason that we had the delay in the first part was because of the clinical trial that I agreed to participate in.  In this trial they are developing a vaccine for Pancreatic Cancer.  I won’t go into the specifics now, but the whole thing is fascinating. Apparently though this vaccine needs to be administered one week before Chemo starts.  So that pushed us back a little.  In addition to that this is phase 3 (of 3) of the study.  This is the one that is presented to the FDA for approval before commercialization of the drug. Because the FDA strictly scrutinizes this particular aspect of the study, they are very particular about whom the allow as a subject.

Yesterday I received a call from my Oncologist (He’s also the one leading this study).  He old me that they had done a thorough review of my medical records and have determined that I’m not a candidate for this study.  You see, they are developing a vaccine for pancreatic cancer.  I don’t have pancreatic cancer.  I have Ampullary Cancer.  Although they are similar, they are different.

The Ampulla is somewhat similar to your body’s bile duct.  Bile ducts come from the Gall Bladder and the Liver, the Ampulla comes from the Pancreas.  Because this particular type of cancer is so rare, it doesn’t get its own classification.  It simply just gets lumped in with the pancreatic type.  Biologically though the two type of tumors are very different.  The Ampullary tumor is far less aggressive than the Pancreatic tumor.

According to Devalingam Mahalingam, M.D., Ph.D, my new oncologist, the rate of recurrence for Amullary Cancer, without Chemo and Radiation is only about 30%.  In fact, there are no clinical studies on Ampullary Cancer to even suggest that Chemo and Radiation reduce the chance of reoccurrence.  In my mind, that all very good news.  I have to be honest, the odds the doctors were giving us prior to yesterday were not anywhere as good as this.

Dr. Mahalingam did say that the treatment for both Pancreatic and Apullary tumors are identical.  He went on to say that in his clinical opinion I should go ahead and submit to Chemo and Radiation.  I am in total agreement.  So I will begin on Monday afternoon.

From my perspective this is simply affirming what I’ve believed all along.  Once this treatment is over, I get to return to my regular life again!  There is definitely a light at the end of the tunnel.

I have said many times, “God isn’t done with me yet.  I’ve got way too much to do!”

Day 6 – Pathology Results

One of Paul’s surgeons stopped by with his pathology report and it’s very GOOD! It looks like the tumor was about 2 cm wide and they got reports of clean margins (That means they removed ALL cancerous tissue!) They removed 21 lymph nodes for biopsy and all but 2 came back clear so Paul WILL be having chemotherapy.

Truth be told, we were having chemo regardless of the pathology reports because Paul is determined to hit this thing with all we got so this is no surprise. We will have a short meeting with the oncologist tomorrow to discuss his treatment and to see when we can get started.

We anticipate being able to start in another 3-4 weeks. Paul is healing very well and should be strong enough to start in about that time frame. We will make arrangements with the doctors here for Paul to receive his chemo in Corpus Christi. They have already indicated that wouldn’t be a problem. That way we won’t have to drive to San Antonio 3 times a week.

the worst part is…….

………………..PAUL IS GOING TO LOSE HIS HAIR!…………………………..

Devastating news I tell you 😀

As far as prognosis, you know, this is one of those types of cancers that really can’t be predicted. His doc said he has seen HOSPICE patients come in here, get treated and 10 years later are still going strong…..another patient  younger than Paul was back in 3 years with issues again……you just can’t tell….

Diligence is going to be our best bet. Paul will go for checkups in 3, 6, 12 and 18 mos. so only time will tell…….we will just have to stay on top of it and continue to live a good clean life and make sure he has the BEST SHOT POSSIBLE to beat this thing once and for all!

Besides the pathology results I am also happy to report (no farting or peeing reports…I’ll save those for Paul!) that Paul is starting on liquids and doing very well. He has had some broth and ice chips and juice and is tolerating it just fine. They are also starting him on some oral medication and tomorrow the epidural will be coming out along with 2 of his drain lines! That will leave him with only an IV in the arm for the duration of his stay and one “bile bag”. That will stay in for about 2 more weeks. They need to continue to drain the pancreas a little while longer. Really, Paul hardly notices it it’s such a small tube…..so that won’t be such a big deal…..

So we spent our day working on my music for “The Full Monty” and we took a nice afternoon siesta like we have done almost every day! 😀 I LOVE my afternoon nap! ha ha! We also took several walks around the floor with “Let It Go” and “Big Black Man” playing on my phone so we could sing and do some grooving down the halls! We had fun with it and he is making rounds on this floor pretty regularly! Oh course, the nurses love him!

I will be checking out of the hotel tomorrow morning and will be leaving for home around noon or 1pm. We both agreed I shouldn’t stay any longer. Really, he is getting along so well it’s not like he NEEDS me here…..but there is no one else he would rather hang out with than “his girl” so it will be a little lonely here for a couple of days……GOOD!….get you out of here all the faster!!

So I will go home so Grandma can go back home and I will just zip back up here to drive the get away car!! That way I can go home and care for the children, make sure the household is moving along as usual and I can start attending rehearsals for “Full Monty”.  I can’t even imagine how crazy my dogs are going to go tomorrow when I come home….I plan on just laying on the floor and letting them get it all out of their system! There is sure to be lots of jumping and happy puppies when Mom gets home tomorrow! I imagine there will also be a couple of happy and jumping children too 🙂

Tag Cloud