Fingers and Toes

I am starting to question my sanity.  My fingers and toes are more numb now then they were when I was on treatment.  The pain, clumsiness, uncomfortableness has gotten worse.  It is now continuous.  Opening plastic bags, trying to pick little things up, tying shoes.  All of this has gotten so much more difficult.

After doing some research, I found that some side effects don’t show till after chemo is done.  I did not think this was a possibility.  I have noticed my fatigue is worse then before as well, which is evidently common.  I wonder now what else will be struggled through in the next few months of recovery.

Honestly, the fingers and toes bother me the most.  They are constant since everything I do involves them.  Everything is just a little harder and hurts or is awkward.  I am curious as to what others have done for this.  I have heard good things about acupuncture, but my dr told me to wait a bit before I try it.

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The Ending is Just the Beginning

Wednesday was the end of my last chemo treatment.  Thursday my family had a toast for me to celebrate the mixture of Thanksgiving and me being done chemo.  It was a touching and surreal moment.

Finally I have crossed over that mystical line of being done chemo and now I am into the recovery stage.  Now my body needs to recover from the surgery and recover from the damage the chemo has done.  For 6 months I have had chemicals induced into my body that literally destroy cells, good and bad cells.  And now my body is suddenly allowed to heal and repair.

Some of the repairs will take time.  The heartburn should go away quickly.  The chemo brain will take a few months.  The peripheral neuropathy will take up to a year, if it isn’t permenant. The numbness/sensitivity in my fingers and toes drives me batty, but at least I won’t be compounding the damage.

It is daunting being on the other side of that line though.  I have lived so long on the chemo side, that not going to treatment in approximately a week.  Working with my oncology crew has become a part of my life.  They have become family and loved.  And now I won’t see them as frequently.

But now for the new beginning.  Now is the time to celebrate life.  Now is the time to enjoy things before returning to work.

Sneak Attack By PTSD

With all that has been going on in my life, I have been partially distracted from the emerging emotions.  The PTSD is still there and is still a battle, but with everything going on I just compartimentalize until I have time and energy to deal with it.

That all changed on Monday.  Monday my grandmother needed to go the hospital.  I got to wear the lovely and attractive face mask so I could hopefully eliminate any germs that might be in an ER.  Let me tell you, it is very stylish, especially with fogging glasses!  The admitted her and started the usual rig-a-marole, blood pressure, temperature, blood work, etc.

The blood work is what got me.  Now remember, I have seen a needle go into my chest via my chemo port every other week.  I wear that needle for 3 days straight every other week.  But when that needle went into her arm I was instantly teleported back to the admittance for my abdominal surgery.  I was instantly back in that hospital bed, dehydrated due to the colon cleanse the night before, the vomiting resulting from the colon cleanse, and of course not being able to drink anything that morning.  The nurse asks my parents and darling knight to step back and let them pull the curtain as they get my IV in.  The nurse apologizes but tells me that the DR has asked for an 18 gauge needle for the IV so that all the stuff can go through that one IV.  Being ignorant I shrug thinking nothing of it until I see the needle.  Evidently 18 gauge is a BIG wide needle.  So I buck up not wanting my family and darling knight to have anything to worry about and lay there waiting for the inevitable prick.

This needle is what gives people nightmares.  The pain of when she tried to get my dehydrated vein was so sudden and so bad I screamed.  She missed the vein and needed to try again, and yet again she apologized.  This time I knew what was come and only whimpered with tears streaming down my face.  I was literally crying due to how much that blasted needle hurt.  She couldn’t successfully get that arm and apologized as she needed to try for my right arm.  Now I am starting to make jokes to make the situation manageable as tears are streaming down my face.  She still couldn’t get it and refused to try again.  She said the nurses at the operating room would have to try.

Now the back flash wasn’t limited to just that horrible thing.  My mind in seconds raced through all the tortures that awaited me after I had the 8 inches of colon removed from my body.  The tubes coming out of me, the drainage ports, the pain, the tube that went up my nose and down into my stomach for a day.  The shear pain of having to move so the nurses could check different things on the front and back of me.  The pain of moving only by pulling myself via arm power as my abdomen couldn’t do anything.  My darling little child seeing me with all those tubes and trying to crack jokes and make her laugh.  Seeing the pain and confusion in her eyes as she sees her mom in this horrible state.  Seeing my Knight’s hand as he slept in a chair next to me so I could have someone with me as I slept.  Seeing my parents trying to hold back tears as they see their daughter in this horrible condition.

In a matter of moments all of this and all the pain I had ignored and put in a metal sealed box rushed to the forefront.  I didn’t even know I had these emotions and was suddenly overwhelmed with them at the worst possible time.  My grandmother is in a hospital bed, scared, confused and suddenly I want to run screaming from the room.  Suddenly I wanted to crawl under a desk in a corner and cry my eyes out.  But none of that was an option.

As I did during my surgery, I shoved those emotions (this time knowingly) into a box for later exploration and started cracking jokes.  During my stay at the hospital pre and post surgery, the nurses commented on my good attitude, on my willingness to find jokes in everything.  I would do funny shuffle dances while doing the loop around the ward once I was able to walk.  I would make jokes about everything and have a smile on my face. I made everyone laugh and by doing so I could ignore what was actually going on with me.  I was in survival mode at its finest.  Only the Knight saw the tears, but again I had unknowingly shoved most of the pain to a dark hidden place and that pain was not allowed out.  My brain and body was trying to protect me without me knowing it.

So I did this for my grandmother.  I had her smiling and laughing.  I had others finding humor.  I did what I needed to do to survive the circumstance.

When I got home however, I knew I needed to open the box of dark feelings.  I needed to let whatever was in there come out.  So like Pandora, when I was alone, home in my bed, I opened the lid.  Was it easy to process through it all?  Oh my word no!  Tears and sobs poured forth.  But they needed to get out and I knew it.  They needed to be processed so I could move forward.  There are still some tears that need to come forth and I know they will for this topic and for probably a lot of my treatment’s emotions that I have hidden away.  Right now I can’t even remember much of the past 6 months.  Part of that is probably the chemo, but I suspect a large part of it was my body defending me against all the angst involved in this path.  I will need to deal with them over time.  Hopefully they won’t be such a sneak attack as this one, but my hope level isn’t too high.

So why do I write this?  I write all of this so hopefully when others go through something similar, they will have been made aware to expect this onrush of emotions.  If anything I hope that others can find hope in the grieving process knowing it won’t be forever.  Also I write it as a way to remind myself this isn’t forever.  This is a year that has been taxing and trying.  But it has been a year with gems, even if right now it is hard to see.  Maybe someday, I will be able to view the pain, suffering, and gems and hold them for the Glory of God.  But right now, I will stay in my survival mode and let things progress as they need.

A Summary Of The Times – Well For Me At Least

The world has been a hurricane of late.  Last week saw my second to last treatment from my 12 treatment set.  But also my grandparents have been requiring constant supervision just due to age and other such things.  My parents are there more then me, but I am there about 12-14 hours a day.  We are just completing our third week of this.

But for me this blog is not about things pertaining to their health.  Mainly for the path I am currently finding myself on.

This last treatment I had to report to my Oncologist that I had lost sensation in the finger tips of my entire left hand and the toes of the left foot.  She encouraged me to drop the Oxaliplatinum, which has the cold sensitivity side-effect.  Being stubborn me, I said “If I can do these two last treatments, I want to try.  I do not want to come back in 6 years and wish I had done those treatments.”  This is when I found out that most people only last 8 treatments on this drug.  There is always the concern of the numbness being permanent.  But I was persistent and got a 50% treatment.

However, with the accumulation of all my 11 treatments on that drug and the stress going on in my life, this past treatment has now spread to my right side.  My right hand has had numbness off and on, but my right foot’s toes are numb almost all the time.  The numbness makes coordination difficult sometimes.  The same could be said for opening things with my hands.  I definitely will not be doing my last dose of the Oxali.  I will still have the 5FU, for my final treatment.  But at least the cold sensitivity can start going away.

I am looking forward to being able to have a glass of cold water, to be able to eat/drink something right out of the fridge with no heating required.  Ice Cream!  Martinis!  There is much I am looking forward to, after 6 months of abstaining from anything cold.  I look forward to being able to touch something in the freezer without pain, to drive my car in cold months without extreme pain.  There is much I am looking forward to.

But there is one more treatment to go.  Poetically, my last treatment falls on Thanksgiving week.  I will be done before Thanksgiving.  Definitely a poetic thing.  Also a lot of the side effects should be gone by Christmas.  This year, these holidays will take on new and grand meanings.  Now to just get there.  🙂

PTSD… it affects most cancer patients

I write this after a few interesting weeks.  The previous two treatments were cake.  How nice to feel like a human again and full of energy.  Why did I feel like that?  No clue, but I definitely appreciated and enjoyed it!  My house saw some much needed attention, I talked with friends, I was a busy bee.

But, as I was feeling better and not fighting the chemo side effects, my emotions had time to catch up with me.  The emotions that had been put on the back burner since April all started surfacing in a matter of days.  When surgery, chemo treatments and just trying to survive day-to-day, the emotions were shoved away.  My concentration was on surviving.  But when I was feeling good, my mind started processing what had happened.  I started seeing what was put in my path.

To say it was a rough series of days would be an understatement.  Emotions rollercoasted back and forth in a cyclical nature.  I was tough to be around and it was tough being in my own head.  Thankfully, after 4 days of suffering I had the ability to step back and realize I needed to talk to someone about it.

After talking to my loving cancer nurse, she explained that this is normal.  Typically it happens after treatment stopped, but my 4 weeks of feeling good was a similar situation.

Most cancer survivors go through something similar after the end of treatments.  After months if not years of battling to live day-to-day with medications and side-effects, suddenly there isn’t anything more to do.   It is time to wait.  It is time to ponder what happened and that is when the emotions start bubbling forth.  And for some it is a huge rush of emotions.  All the emotions of “why me”, of sadness, of anger, of depression surface.  And with that comes the need to deal with them and process them.

My cancer group pairs with Cancer Cares out of Delaware and with them are cancer counselors that are used to dealing with this.  It is a tough thing to deal with.  It is something that is hard to deal with alone.  I am grateful for my team.  They have been there supporting me and loving me even during my 4 days of struggles.

Realizing what was going was the life saver for me.  It was the one thing that let me put a handle on it and help me deal with it.  It is normal, no I am not losing my mind.  It is a necessary step for healing.  It is something I can conquer with time and energy, just like cancer.  And with that realization, I can hope.  It may be a small ray of hope but it is hope none-the-less.