The “C” Word – Day 84 First Surgical follow up

We did lab work yesterday in preparation for today’s appointment.  While some of the chem levels were high or low, they were just .1 - .3 off the “norm” so nothing worrisome.  The surprising thing was to see the potassium levels were high – that is a first since we started all of this.  The doctor said he ordered the labs to see how George was tolerating the Lasix (to relieve the edema).

When George got up this morning he had another part of the stitch line that had opened up and had a good deal of bloody fluid on his clothing.  After his shower I carefully covered that and was glad that we had an appointment today.

Upon weigh in, George is now under 200 pounds.  He probably has not seen that weight in nearly two decades.  It was also a significant drop from just 10 days ago when we were at the oncologists office. 

The doctor came in and discussed how things are going.  He did say that the recovery is going a bit slower than expected…. He expected slow but this is a little bit more.  We talked about the breathing issue and he said we should get an xray by Sunday or Monday in order for the oncologist to look at the scan on Tuesday and determine if there is fluid around the lungs again.  He said to wait a couple of days before doing so to see if the Lasix will release fluid or not.  It is not unusual for fluid to build up after having it pulled off once (which George had done on the day we were released from the hospital). 

He looked at the now-open wound and stuck a q-tip deep inside and said that the wound was clean.  He showed me what I was going to have to do in order to ensure that the wound stays open long enough to heal from the inside out.  Kind of gross.  I had to stop and buy a ton of gauze on the way home in order to do this procedure.  I hope my stomach can handle it.  Otherwise I might call my nurse-neighbor over to give me a hand!!  [I can remember when Mike had a large sunburn boil on his shoulder that he wanted me to ‘pop’ and got nauseous just thinking about it – fortunately in that case it broke on his own so I did not have to do it.]

The doctor asked George how often he ate and George said, “three times a day”.  He told him he needs to eat six times a day and that he should always have some sort of high protein snack or similar thing with him at all times.  He said George should set a timer to go off every two hours to remind him it is time to eat something.

After our appointment we went over to CancerCare Point, a non-profit that supports cancer patients, survivors and caregivers.  We need to “plug in” there for some support.  As we spoke with the social worker there it was evident to me that I am not dealing as well as I think I am.  Like George, I am very independent and do not like to acknowledge the fact that this whole ordeal has been more difficult than we both realize.  I don’t like to admit that I am not as strong as I look. It has taken its’ toll on us physically and emotionally.  Our feelings are just beneath the surface. 

It is also evident that I need to take better care of me. While work is my daily “escape” from the doldrums at home, it is work.  I have pledged to get back to starting my work outs next week.  I am signed up for the monthly caregiver support meeting next Wednesday night, and the social worker signed me up for a free hour long massage next Friday afternoon at the center.  Being with other caregivers will be an outlet for me and will give me an opportunity to meet other people dealing with cancers.  Ours is a bit more unique but there will be some similarities.  When George is ready, he too will do some of the activities that the center has to offer.  It may be awhile for him – he will not be driving for a bit still.  He has a journey to travel still in order to get his strength again – but he will need the support of other “survivors” for his emotional well-being also. 

Tonight is Halloween.  Normally we would sit outside with some props and hand out candy.  But today we got some rain and it is dismal and cold out, so I will be popping out of my chair handing out candy while George sits and watches TV.  We may call it a night early and try to get a decent night sleep.  George was able to “dial down” his CPAP last night and that helped – and the doctor told him he can dial it back even further.  We will see how he does with that. 

Last night, at 2AM, our fire alarm started to beep that it had a low battery…. The beeping continued even after I pulled the battery out so I put it in the garage to let it die down.  That meant that I was awake for a bit last night so I am a little tired today.  Hopefully sleep will not evade me and I won’t be awoken in the middle of the night again!!

The “C” Word – Day 82 New Meds do the job

The main “complaints” I have had recently were that George was still having signs of edema – mainly in his feet.  He also was having continued problems with his breathing.  The other major complaint was getting enough calories in his system to help him build energy.  I was lucky if he ate 400-500 calories a day.  Most days I would estimate it to be under 400!

I contacted the oncologist via George’s online messaging system and told him about the eating issue.  He recommended an appetite stimulant which we finally got prescribed yesterday. 

For the edema I made George contact his surgeon to discuss the issue and, on the surgeon’s request, called their office to get a medication to help with that.  s

So we have added two medications in the past day and a half… and they appear to be working.  The edema in George’s feet appears to be lessening (not only from the medication but from the “physical therapy” I have him doing).  His breathing is still labored – and he tires just walking from one room to the next.  We see the surgeon on Friday and will get that checked out a little further. 

The medication for the appetite is working as George did spend some time “scrounging” for food.  He snacked on crackers in between meals.  He ate a rather good dinner tonight.  Every little bit helps.

I asked George about how much time he spent out of his chair today and he replied “five minutes”.  I told him he should be doing more than that in a day.  I encouraged him to walk around outside tomorrow as the weather has been very nice (and it is supposed to rain on Friday).  He needs to get on his feet and get his muscles working!!  I know he had a big surgery but it has been a month now (can you believe it) – and feel that five minutes of getting up and moving around is not very much for this point in recovery.  I wonder if the surgeon will agree.

Tomorrow evening we get labs done for the Friday appointment.  It will be interesting to see how different they are from last week’s.  We should see some good improvement.

The “C” Word – Day 80 Many roles of a spousal caregiver

I have discovered that when going through a long and difficult disease that spouses must take on many roles.  Each of these in and of themselves is a stressor – so when you have to be all of these in combination it is no wonder that we have “break downs” on a somewhat regular basis.

Cheerleader (aka encourager):   “Come on honey, you can do this!”, “Just one more bite!”, “Yeah!  You did it!”, “Just walk around the room one more time!”  From the initial discovery when we are trying to get them to remain hopeful to post surgery “atta boy” when you get them to do that one extra step to help them recover, our spouses need constant encouraging and reinforcing that they are moving forward.

Advocate (aka decision maker): I learned early on that I was going to have to take the reins on a lot of decision making.  That was evident when he was not sure about making an appointment with a surgeon that he had never heard of because he was sure there were no experts in our area.  Since then I have had to make or help to make many decisions.  I had to learn how the systems work in the medical industry in order to know what to do next.  In the hospital I had to maneuver my way around the medical personnel and help him get the care he not only needed but deserved.  This was probably the hardest thing to do as each shift brought different staff with them and that changed constantly.  George was too tired and too confused to make any decisions on his own and being with him 24/7 was the only way I could ensure that I knew exactly what was going on with his care every moment of every day in order to understand where he was in his recovery.  Now, nearly four weeks post-surgery, I am trying to get him to take over some of the advocacy.  While it is sometimes easier for me because I do not have a problem contacting his doctors, he needs to be urged and prodded to take those steps because he is still uncertain as to what he needs to do or should do. 

Educator : Arming myself with enough knowledge to know what the choices are.  Does he need more medicine or a follow up appointment?  What are signs and symptoms I should be watching for?

Nurse:  In the hospital I became the nurse, helping him to and from the bathroom… bathing… changing beds and pads and gowns… adjusting pillows… The only thing I could not do was administer most of his medications.  There were a couple of them that they allowed me to help him “get down” as they required mixing and giving to him with his meals which he received irregularly.  Once home I needed to keep an eye on the stitch line and when a few areas appeared to separate I had to dress them and keep an eye on them regularly.  I have to keep an eye on the edema and remind him to move his TED stocking periodically to make sure he doesn’t cause more damage. 

Pill organizer and pill pusher:  I have had to learn how to maximize his pill taking on a daily basis.  Trying to figure out how to get them in during waking hours if possible.  But, sometimes that is not possible so I have had to set my clock to wake me up at 2AM in order to give him a medication.  Setting my phone clock to go off up to five times a day in order to remind him it is time to take pills…. And then ensuring that he takes the right ones.  He has no idea what I am giving him or for what most of the time.  He blindly relies on me to make sure he is taking his medications and needs them set up so when he is on his own during the day he knows what he needs to do.

Master calendar keeper: Beyond the pill keeping is the need to keep the calendar for all appointments.  I have done this since the initial diagnosis as his brain cannot keep track of any of that.  “Just tell me where I need to be and when.”  He has no desire to keep track of his calendar.  I just need to go over it every few days and remind him of any upcoming appointments.  However, he often does not remember exactly when they are.  Today, for instance, he knew we had an appointment this coming Friday but he does not remember what time it is even though I have probably mentioned it a few times.   Oh, by the way, I do not keep track of calendar events via a smart phone or electronic method.  I am strictly an “old fashioned” gal who keeps a small calendar in my purse and transfers that to a desktop one at home from time to time. 

Physical Therapist (aka creative engineer and massage therapist):  The only PT he got at the hospital was to make sure he could walk enough to be able to get around at home and to climb a flight of stairs.  Once that was accomplished they signed off and said “he’s good to go!”  Once we arrived home the harsh reality sets in and he barely walks around and, though he can climb stairs, after two weeks at home that is still a taxing event.  He needs continual reminding to use his Spirometer, to move his joints and legs around so that blood keeps flowing.  I have given leg massages to try to move the fluids in his feet and ankles around.   I realized that there were things he could do with a “yoga strap” or flex band to help keep his ankles and feet moving more while he sits in his chair.  I am continually looking for ways to ensure that he still gets some activity and that there are things he can do while being sedentary to help in his recovery. 

Suffice it to say, with all of those things going on it is difficult to find the time to just “be me” or to just “be a wife”.  I know in a prior posting after one of my rants that I said “I just want to be a wife” – and that is so true.  I am sure I am not alone in this.  And this is something that happens in all marriages – that there are periods of time when you are constantly in demand for things other than that of “wife”… when you have young children you have demands that make it hard to have “couple time”.  This feels sort of the same… for now I have a “child” in the house that needs a lot of attention, requires a lot of time to care for as cheerleader, advocate, educator, nurse, calendar keeper, physical therapist, etc.  I am sure there are things I am leaving out (like chief cook and bottle washer) – and there are the normal day to day things to take care of (bills, household chores, laundry, yard work) which get pushed aside to some degree.   The scales of balance are tipped so far off it is no wonder I fall off the edge now and then. When something happens that throws me off course just that “little bit more” it is no wonder I rant and rave.  I guess that is my prerogative.   Most of the time I do okay – aside from being a bit tired it has become somewhat routine.  But it is also why I am trying to get George to start re-focusing and learning how to do some things for himself again.  Again, I have to be creative – or I have to create workable “lists” for him to work from so he is reminded about doing those things that are important for the day.  But each little thing I can get him to do for himself allows me to get back an extra few seconds in my day.  I need him to be proactive, not reactive – because having to react when things get bad totally throws off my balance.

My goal for next week is to start getting back more into MY routine which means getting in at last two small workouts a week until I am back to regular workout schedule.  This week I am still catching up on all the sleep that I lost!!

The “C” Word – Day 78 Turning around

I am hoping that we have started to turn the corner.  Things have been improving ever so slightly.

It took a full day or two for the Benadryl to wear out of George’s system.  Although the transfusion may have given some energy because it raised his blood count and helped with the anemia, the Benadryl gave him less energy to use. 

On the plus side, the mouthwash and pills for the mouth sores has had very good results.  The lips and tongue are nice and clear.  It will take a while for his taste buds to grow back but every once so often he gets a sliver of taste.  He is still not eating a lot – under 500 calories a day is my guess.  He is getting cravings – but can only eat small amounts of whatever it is. Today it was a bagel with shmear from Noahs’ Bagels.   I told him he needs to promise that he will have at least one nutritional drink a day whether it is Ensure, Ensure Clear or Muscle Milk.  Or maybe his mouth will be up for a good Jamba Juice soon.  That will help!!

He still is getting edema, mainly in his feet – and usually one foot or the other, not consistently the same.  He keeps them somewhat elevated all day but a sitting position does not allow them to be higher than his heart.  And he still cannot lay flat so that the feet can be elevated.  However, at night it helps that he is more reclined than during the day.  I have given a few foot massages in hopes of moving some of the fluid around.  It would help if he got up and walked around a bit more during the day and got the blood pumping on its own.  Hopefully as he gets more strength that will happen more. 

Yesterday he treated me and Sara to pedicures and lunch out [he did not go – he helped pay for it].  Something “fun” for me to do as there has not been a whole lot of fun in my life of late.  He recognizes that. We have had some discussions especially when I get very frustrated.  He knows I am trying to help when I nag yet he finds it physically and mentally impossible to sometimes do what I am asking.  I try to back off some but have a hard time finding the balance between nagging and reminding.  He says I did a better job today. 

Today we spent doing a lot of nothing.  Although I slept pretty well last night I am still quite tired.  And he was not able to sleep much at all last night yet he hasn’t done too much sleeping today either.  He catnapped here and there but not really very well.  He is having some difficulty breathing, not all the time but in certain positions.  I told him he needs to be proactive and contact the doctor about any concerns he might have and not wait until whenever the next appointment happens to be.

I find that I am missing sleeping in my bed but with his problems he spends the night moving the head of the bed up and down (we have an adjustable bed) and also has problems with leakage from his mouth when his CPAP is on so it is best for me not to share a bed with him right now.  Until he can roll over and sleep on his side we will be “separate sleepers”.  This, of course, does nothing to appease the fact that we need to experience some “together” time… so every once in a while we might actually sit side by side on one of our couches – it might involve hand holding – and sometimes it might also involve putting soft music on and just sitting with or without conversation.  That’s about the extent of what intimacy will look like in our house for the time being. 

Where we are now is ahead of where we were a week ago.  We still have a long way to go – but we have to accept the small strides.  We wish it would go faster, we are not where we thought we would be by this point in time.  I guess we need to remember to be grateful that we are here at all because certainly, 2 ½ months ago we did not think we would have a chance of surviving this “c” word.  Yet, here we are – and we will come through this. 

The “C” Word – Day 75 Blood Transfusions

Today George spent the better part of the day at Good Samaritan Hospital – but this time as an outpatient.  Thanks to Sara who was able to block out her time to spend getting him checked in and settled in for the afternoon.

He had to be at registration around 11:30 in order to get his blood cross checked at noon.  While they had hoped to be able to start a little ahead of his 2PM transfusion, it took several nurses multiple attempts to find a good vein between his limbs being swollen still and his dehydration.  I think it sounded like 7 or 8 attempts were made to find the final location.  By the time they were able to start it was around 2:45.  Each bag takes about 2.5 hours so he was going to be there awhile. 

Sara helped order up some food for him and said he did quite well at eating.  I arrived around 3:45 to take over.  It was a long quiet afternoon and evening and we managed to get out at 8:30PM. 

I have to say that the outpatient treatment we received on the 5^th floor was far better than our two week stay.  The nurses stayed on top of the process and there was no wasted time waiting for things to be switched over. 

George was more alert when we were done this evening.  Were it not for the Benadryl they gave him at the onset he would probably be even more alert.  The anemia and vitamin deficiency has caused memory loss for George.  He has not been able to remember things well at all unless they are written down.  Fortunately this is “reversible memory loss” if we can get his body to function at a more even keel!  I don’t think I could have two people in this house with Alzheimer’s/Memory Loss!

I hope that a good night of rest will enable him to feel better and stronger tomorrow.  The magic mouthwash is enabling him to start eating more now.  That is a good sign and gives us hope that things will start turning a corner.

The “C” Word – Day 74 Update on oncology appointment

This morning we had our first oncology appointment since the surgery.  George has lost about 5 lbs. since we left the hospital (I deducted a few pounds for shoes since he did not wear them at the 7AM weigh in time at the hospital on the 15^th).  This is largely due to the fact that we are lucky if he eats 400 calories in a day due to the mouth sores.

We covered the questions we needed to ask the doctor and he subsequently ordered prescriptions for “magic mouthwash” containing lidocaine to ease the pain in George’s mouth and also has some antibiotic component I think.  He also order some meds to control what is viewed as herpes of the mouth.  Most of us may have a herpes bug running around in our bodies that remains inactive until something stresses the body out (i.e. surgery, chemo, etc) at which point it decides to rear its’ ugly head.  We hope that within a day or two that these will help ease the symptoms and within 4 or 5 days that it is nearly gone.  Keeping our fingers crossed.

We talked about the fact that this also could have been induced due to a vitamin deficiency given that whatever George does manage to drink has no nutritional value to it.  So he was told to take a multivitamin. 

Because some of George’s blood counts and other things are quite low, doctor ordered up to have 2 units of blood transfused tomorrow.  I called upon my Sara to see if she can drive him over there and get him situated allowing me time to spend with clients as Wednesdays are quite busy.  I will then go over mid-afternoon to check on him and pick him up.  Hopefully that will give him back some energy as well.  Once he starts being able to eat again I hope that his blood levels return to normal so we do not have to keep doing transfusions. 

Stitches are healing okay – even the ones that are somewhat “open” as they are clean drains at this point in time (thanks to advice from our neighbor about how to get them to stay that way). 

The only “down” side of the new meds is that they have to be taken 5 times a day at fairly equal times so I will need to wake George at 2AM to take one of them AND to drink a lot of water.  It is only for 5 days – so hopefully we will both be able to fall back quickly to sleep.  I am still sleeping on the airbed in the other bedroom as George is not able to sleep with his mouth closed since he cannot sleep on his side yet. . . and the CPAP air blowing out of his mouth can be quite annoying.  So I at least am getting decent sleep when given the chance.

Today was pretty non-productive at work since I did not even get in until nearly 11AM. My boss wanted to take me to lunch today so that was a nice long lunch break as well.  We both needed to reconnect as between my time out of the office which was on the heels of her being out of the office for a few weeks has meant that we have barely seen each other for well over a month.  It is so nice to work for understanding people who have become friends over the course of time.  Since we are a small business we all rely heavily on one another to run everything as smoothly as possible.  We are a great team of people.

Praying that between new mouth meds and medications to get rid of the virus, the transfusion, and good rest that things start proceeding forward at a better rate than they have been.  It would be nice for them all to come together so that George can feel human again and thus motivated to start moving around more and more.  

The “C” Word – Day 73 Getting things sorted out

I have struggled the past few days with my own emotions.  I feel as though they are all over the place but they keep ending up in the “down” position.  I have grown weary of trying to get things of nutritional value into George.  I know the canker sores hurt but I feel as though he still should try to get something besides popsicles and slurpees into his system because they won’t help him energy-wise.  I am tired of reminding him that he needs to move a little more.  I told him that he should be able to walk a full circle around the house.  He said “I think I can do it.”  My response, “Thinking and actually doing are two different things.  We can THINK we can do things all day long.” That applies to all thing things he needs to do – using the spirometer, eating healthy choices, walking, etc.  The only positive thing I saw today was that he and his mom walked around the patio for five or ten minutes.  Reminding and prodding throughout the day is exhausting especially when it just pisses George off.   Finally I just put my hands up in surrender and said “I give up!”  I told George that what happens next is up to him.  He knows what he needs to do.  I am not happy with “giving up”, in fact it made me miserable.  But I am it my wits end with the myriad of delays over the past few weeks.  Just as it looks we are moving forward there is another step backward.  It is like an endless roller coaster and all I want to do now is get off.

Last night as I was trying to sort out whatever it is that is bothering me.  It occurred to me that I miss my husband.  My husband has physically been here since early August but emotionally he has been totally absent.  From the two months where fear and anxiety enveloped his entire being to now being incapacitated by various traumas and complications it has been a daily struggle for me to try to keep upbeat, keep him focused, moving forward.  That, coupled with the lack of sleep for a few weeks has left me emotionally drained.  I am exhausted.

George is confused and scared by my 180 degree turn.  I just stopped “doing”.  I went back to work and when asked if I was looking forward to it, my response was “yes, at least there I feel like I am doing some good.”  At home, it does not feel like I am doing good.  At home it feels like I am spending my entire day watching George who is just sleeping, sitting, not talking.  It is lonely.  It has been lonely for a few months. 

My going back to work will force George to get up and do things for himself.  While it may be difficult, I know that he can at least get up and feed and water himself, get himself to the bathroom, etc.  Very basic stuff.  He does not need me to wait on him as much.  The only one that can motivate him at this point is him.  He needs to figure out how to make it all work.  It is time to “sink or swim” – and though I am fearful that he might sink first there is nothing else I can do.

I do not want to be a caregiver – a nurse… I want to be a wife.  And I don’t know how to get that back.  I am having a hard time finding some middle ground where I can exist peacefully. I want my husband back – the one that “sees hill, takes hill”, the one that likes to tinker in the garage, the one that enjoys sitting in the back yard watching the birds and the squirrels, the one that I can make laugh by my silliness.  Smiles are hard to come by.  Creativity has flown out the door.  I know I will not get these back anytime soon by sheer nature of this beast.  But I long for it – I crave it. 

I spoke with George about my concerns and feelings last night.  I am angry with myself for being frustrated and letting things get to me.  I had my pity party for a few hours last night.  I am tired of having weekly meltdowns.  That is just not in my nature as a rule. 

Today we see the oncologist for our first post-surgery follow up.  It is preceded by lab work so we will see how George is faring on his non-nutritional diet.  We will see if we can find out how to get relief from the mouth sores so he can eat again.  We will try to cross this hurdle and hope that it is the last big one we have to endure for a while.  Somehow we have to be able to find our new normal.  We aren’t there yet.  I pray it is just around the corner.