The C Word – R is for Rest – Recovery – Respite – Resolve

It has been four weeks since George’s last treatment. 

R is for Rest – George still has very little energy and spends much time resting in his recliner or relaxing in bed.  It’s not quite the same fatigue he had during chemo, but it is still there.  Some days he literally opens his eyes for only about 5 hours.  And other days, like today, he has been awake and watching TV and reading on his iPad and even enjoying dinner out with some friends this evening.

R is for Recovery – His body is in need of recuperating from the poison injected in his system for eight weeks.  I am happy to report that his appetite has increased some, though is still on the low side as has been the case for the past year or so.  His mouth sores are gone.  His taste buds are reawakening.  He is gaining back a little bit of the weight he lost. Although his blood counts were low at his last doctor appointment, those numbers should now be recovering as well since we are past the 3 week mark.  This means that he is able to go out more and he is looking forward to going back to church in another week.  We do not know how long it will take to get to pre-chemo status but are hoping it is less than the 3 months people tell us about since he did not get a full six month regimen of chemo.

R is for Respite – Sort of going back to more normal.  And, for me, feeling that I can take time away from home and enjoy doing things with others.  Having George’s immune system on the mend means that I can also be out amidst larger groups of people.  I even plan on going overnight to visit my daughter in Roseville.  It’s been over two months since I’ve been away from home for an overnight anywhere.

R is for Resolve – We have resolved that we want to improve George’s quality of life in order to enjoy whatever time he has left here.  Again, we don’t know exactly how to make that happen, but it is a goal.  Life beyond the recliner!  Due to the pulmonary embolism (PE) and blood clot, we can’t fly anywhere for six months – but hopefully will get to a point where we can do day trips or two to three day trips. 

We likely won’t have any additional news for the next few months – unless something happens to warrant our undivided attention.  For now we relish the fact that there are fewer doctor appointments, fewer days of exhaustion and more time to be together.

The C Word – Round 4 done and so are we

I can hardly describe what the past eight weeks has been like.  Chemo has been one horrific experience for George with side effects that took him by surprise.  As each chemo round came and went, some known side effects got worse while others ebbed and flowed depending on where he was in the cycle.

The knowns: 

Neuropathy:  This was somewhat mild and, on the occasions he felt them, appeared mostly at night in bed. 

Peeling fingers:  His finger started peeling at the tips and worked their way down the entire length over time.  This didn’t start until about week five or six which is apparently about the time they would do so.

Mouth sores:  He’s had a few but not ever as bad as ones he had after his surgery and HIPEC back in 2014. 

Loss of taste:  This changes from day to day.  Some days he can taste certain things and other days he can’t.  We never know what it will be.

Loss of appetite:  This has gotten very bad over the past few days.  He has no appetite and is eating very little.  He eats because he knows he has to but would be content to not eat a thing.

Loss of hair:  This has been minimal – mostly some thinning but he does still have hair.  I noticed that it is whiter now than it was.

Loss of energy/stamina:  This is one of the biggest hits to him.  He has gotten very weak over the past two months.  Standing for longer than a few minutes is difficult.  Walks are fairly short ones these days. 

Diarrhea:  Been there, done that. Has had this issue for the past few years. However, the difference is that he started taking Imodium for the first time in a few years.  Even with eight Imodium a day (which, by the way, he can actually take more of if needed)… he still is having issues!

The unknown:

Anal fissure:  We had never heard of these.  They were not on the “list of side effects” and never mentioned by anyone else.  This particular side effect has been so brutal!  They can and did make a grown man cry in agony.  We have tried just about everything to relieve them and at one point had it almost under control - - only to have the next chemo treatment and back the pain came!  This was the absolute crushing side effect ever.

Emotional turmoil:  A cancer diagnosis put us on a roller coaster of emotions.  But chemo has brought a whole different set of emotions.  George finds himself no in control of his emotions anymore.  A touching commercial or a scene in a show will bring tears.  This past week has been especially difficult as we struggle with “what’s next” in our journey.  The fear that exists can be daunting.  Fear of the future.  Fear of being alone.  Fear of change. 

Yet here we found ourselves on the precipice of more change.

On Monday there was a CT scan to find out if the chemo is working.  We wouldn’t find out the results until today.

During the week George did a lot of thinking about his treatment.  He is so tired of being tired – more like exhausted – even after sleeping.  He doesn’t like the fact that he’s not hungry.  He’s lost about 7 or 8 pounds this past week.  He is tired of the pain he experiences every time he needs to use the bathroom.  Given these issues, he decided even before the appointment that he wants to discontinue chemotherapy treatments.  The side effects are not something he thinks he can tolerate for another four months. 

This is a catch-22 decision as one the one hand he feels relieved and hopes to get back to where he was pre-chemo yet on the other hand wonders if he’s giving up too soon.

Going back on “watch and wait” means that we will be fully engaged with palliative care to help treat symptoms as they arise.  Hopefully we can find the right solutions so that George is not only comfortable but wants to do more than sit in his chair. 

It also means that there is no other treatment unless or until something happens to warrant a procedure or a surgery.  This means that should he get a full bowel obstruction, he would likely by hospitalized and treated and further surgery could be involved.  We acknowledge that any new surgeries will result in more lifestyle changes because he is “running out of spare parts”. 

And me?  While I acknowledged that I knew this day was coming, I found myself restless, anxious.  Although the first half of my night was spent in peaceful slumber, I woke to “hearing songs” replaying over and over, something that hasn’t happened since I started taking antipressants and sleep medication.  I finally fell back to sleep but kept having dreams that would wake me up.  I was tempted to stay in bed this morning but knew that the best thing I could do for myself was to get up and do my early morning walk.  I noticed that the pep in my step was just not there today.  A lot on my mind as I thought about the doctor appointment that was coming up.  I was anticipating the surge of emotions as we verbally declared “No more treatments”.  

It turns out that was the least of our worries today. 

The scans showed some stability in two small tumors on the lungs, but nearly all the others had slight growth from the scan a few months ago.  George telling the doctor he wanted to stop treatment was easy.

THEN…. We found out that the scan also showed a “subsegment pulmonary emboli” in one of the lobes of his lung.  As we sat chatting with him about that, his assistant was scheduling an ultrasound for today as soon as possible.  In fact, my phone buzzed with an alert for an appointment in just one hour!  We found out that cancer actually puts one at risk for clots!  Another unknown that we had not anticipated.

We quickly ran home so I could at least pick up my crocheting and have something to do.  Rushing back to the center, I grabbed a sandwich at the café. 

After the ultrasound, George came out and said that they found a blood clot in his left leg. So…… back upstairs we went to meet with our oncologist’s nurse.  We then spent the next hour or so waiting for a few things.  Waiting for one of the nurses to find Xarelto at a local pharmacy and check on costs.  Waiting as they talked to the doctor and discuss alternatives after we found out the cost would be nearly $500 for a 6 week supply of starter meds! Apparently, George’s insurance is in the “donut hole” of Medicare where he has to pay out of pocket for a while.  The nurses did an excellent job of sorting everything out and finding a solution that worked for George to get started on meds tonight.

While we are grateful for the scan because it caught the PE before it did damage, we are frustrated that there is another glitch for George.  Not only does he have to deal with untreatable cancer, but now will likely be on blood thinners and hope they do their job of dissolving the clots. As he says, “the hits keep on coming”.  Right now, the clot and the PE are more critical than the cancer! 

This was not at all what we anticipated for the day!  We thought we’d be home by around noon but instead spent nearly 5 hours at Stanford.  Long day for both of us.  Long day of emotional waves, anger and frustration. 

We feel as though the universe just did another flip flop on us.  Not as bad as the one that occurred just 4 years ago (8/9/2014) which started me on this blogging path, but a flip flop none-the-less. 

It is time to take a deep breath and navigate the twists and turns that we both chose this week and also for the ones we didn’t choose.  No more chemo – back to watch and wait and treat symptoms.  Acknowledging that it will take awhile for him to get back to where he was before we started chemo – and hoping he can get there.  And now we also need to be watchful for symptoms in case the clot or PE makes a move.  And, much to George’s chagrin, add more pills into those wonderful containers!  It feels like a pharmacy here sometimes!

For those reading this blog, we appreciate your prayers that the clot/PE issue clears up with no complications.  While we are feeling a little more peace about the decision to stop chemo (I guess it helps to have something else to divert your attention), we pray that things move slowly and that we are able to manage symptoms in order to have some quality of life while we can. 

If you want to support our cancer cause, you can head over to my Etsy site (CAREAngelsCreations) and see what’s there.  I will be adding over 40 bowl cozies by the end of the weekend – I hope!  I had planned on sewing today but we all know where that time went!

If you’ve sent cards or made phone calls to us, we appreciate it so much.  If you’ve visited, thank you thank you!  Anything that brings a smile to George’s face or takes away the boredom of sitting all day long is wonderful!  Keep it up!!