Surgery Update

Surgery #4 is in the books!  The two spots were both removed and did not need skin grafts.  What a huge present!!  Jim said he only narrowly missed grafts as both locations were difficult to close.  He will need to be extra vigilant and baby that hand for a while.  The nurse told him he absolutely should not use it at all.  I am very impressed with my own personal restraint for not throwing something or screaming when I caught him holding the phone with it.  Jimmy.....  (Insert exasperated sigh and eye roll here.)

The two spots that were operated on were located on the top of his middle finger and on the side of his pinky on his left hand.  At this point, Jim is in the blissful place where the meds from surgery are still in effect.  Typically the night is harder, so hopefully his prescription will help hold him this evening.  Of course, should the need arise, we do have a new bottle of fireball, too.  

Jim's Left Hand - location "A" 12/15/14

Jim's Left Hand 12/15/14

Jim's Left Hand - Location B 12/15/14

To keep life interesting, Quentin came down with a fever yesterday.  Seriously???  He and I dropped Jim off at the dermatologist with only one tricky coughing fit in the car.  Q seems to be doing ok now with a low fever, a wicked sore throat, and cough.  How those boys like to keep me on my toes!!

I was a little bummed that I couldn't speak to the doctor with Jim.  I had a few questions about how this journey seems to be never ending and wanted to ask if there is anything else we should be looking into or trying.  The doctor told Jim there isn't anything else we should be doing to help.  This isn't a condition that can be remedied with diet, supplements, or homeopathic types of treatments, nor is it a situation that we can afford to waste any time on at all.  The doctor shared that his fear is Jim is going to grow weary enough of everything and give up.  Squamous cell carcinoma can be aggressive - spreading deeper and covering a larger area in a short amount of time.  Obviously, that would cause a much bigger problem for Jim!  In addition, there are no other treatments besides surgery and topical chemo cream that would be beneficial.  His doctor explained that radiation or other forms of chemotherapy would not be effective with this type of cancer.  So, while frustrated and exhausted, we cannot quit or get complacent with the process.  When his hand heals from this surgery, the plan is to begin topical chemo.  

So, in the spirit of taking things off of my plate, I think I am skipping Christmas cards this year.  All things considered... I'm running out of time and have no spare time anyway.  Maybe next year!  Hopefully, we will not be blogging about skin cancer then. Wouldn't that be awesome?!  We do hope all of our friends and family have a very Merry Christmas.  We will be keeping things low key and relaxing at the Leighty home.  Sounds delightful!

Bummer

Two of the three spots biopsied last week are indeed squamous cell carcinoma.  (The one on Jim's wrist is not.)  So, Jim's next surgery is scheduled for Monday, December 15th.  We are both bummed, but doing well.... (Cabernet franc and a little whiskey are having medicinal effects tonight.)  Hopefully, Jim will avoid a skin graft this time, but given the locations, this is a possibility we are mentally preparing for.  I'll post again after the next surgery.  

Thankful...ish

Jim, the boys, and I have blissfully been enjoying a little downtime this past month.  Jim loves life without the chemo wrap and gloves.  I am celebrating a happy hubby who can actually get both hands wet and help out like he used to.  And, our two crazy boys are loving our "normal" little life.  While we are so grateful for the downtime, we knew it was only temporary.

A little over a week ago, Jim came home with a bright red rash all the way around his middle and back.  Fiery and red, Jim said it felt like thorns under the skin, painful and itchy.  Certain it was from the acitretin medicine, Jim quit taking it immediately.  That medication causes the precancerous spots to peel or slough off, helping the doctors identify the cancerous spots. Thus far, it had only effected his hands and feet.  Well, Jim just happens to be married to an extremely pushy woman who insisted he see one of his dermatologists to confirm the acitretin was causing the rash and make sure it was safe to stop taking it.  He saw his VA doc right away, who did confirm Jim's hunch as to the medication being the cause and agreed that stopping it was the best plan while still being a safe option.  She also sided with the overbearing spouse and informed Jim that his medical team must be involved when making a medication change.  So, the best of both worlds... both of us stubborn mules were correct.  Since stopping the meds, the skin on his midsection is looking much better and feeling a heck of a lot more comfortable.  Whew.

Unfortunately, Jim had also noticed some dark spots on his left hand - NOT the hand that was treated with the chemo wrap.  He made an appointment with his civilian dermatologist to check these out.  In the meantime, his VA doc peeked at the spots, too.  She felt biopsies were in order, but would defer to the civilian doctor who has handled the past surgeries and the chemo treatment.  Today, Jim saw the civilian doc who agreed with the need for more biopsies.  He took three from Jim's left hand - one from the outside of his pinky finger, one from his middle finger near his hand, and the third from his wrist.  When the results come in, a plan will be made on the best course of treatment.  Right now, it sounds very likely that if any of the spots are cancerous, surgery will be the next step.  If not, Jim will probably be ready to face the chemo wrap for that hand.  Hopefully, we will get biopsy results early next week. 

Jim's left hand, 11/24/14.  Three biopsy sites.

In addition to the biopsies, the doctor also froze 6 spots on his right hand.  Thankfully, it appears like the chemo cream worked effectively in isolating those spots.  Hopefully, they will respond well to the freezing.  

Jim is doing pretty well tonight.  The biopsy sites are very tender and the spots the doctor froze are uncomfortable and burning.  Fortunately, this usually doesn't last too long.

We both are very weary and frustrated with all of this, but doing well overall.  I figure if we are still getting up each day, facing work with a smile (or some semblance of a smile), the wine hasn't run out, our children are fed and relatively clean, then we must be doing alright.  Right??  We'll keep counting our blessings and remembering all the things to be thankful for this Thanksgiving week .... like good doctors, modern medicine, our two little guys, one sweet puppy, supportive family, wonderful friends, fireball for the stubborn man and good red wine for his pushy wife.

A Quiet November

We're taking a break!  Whew!!  After carefully examining Jim's right hand, the dermatologist decided the chemo treatment was complete.... for that hand. Thank goodness.  Jim is so, so glad to be glove free! The doctor felt that the chemo did what it was supposed to do and will watch his hand as it heals.  We will start again with a chemo wrap on his left hand in early December.

As of now, Jim's chemo hand is very tender and feels like a bad sunburn.  He said it hurts if it gets rubbed or bumped at all.  Even putting his hand in his pocket is painful.  Apparently, puppy nips and handshakes can bring Jim to his knees in an instant, too.  Hopefully, he will be getting some relief in the month to come.

Jim's Right Hand - Post Chemo 10/28/14

Jim's Right Hand - Post Chemo 10/28/14 

Right hand - 10/28/14

  

Wrap and Rewrap

Yesterday, Jim visited the dermatologist to have his wrap redone.  So far, the experts feel this process is working as hoped.   Jim now has three weeks of topical chemo treatment under his belt... or glove, as the case may be.  Next Tuesday, the dermatologist will examine his skin and decide if four weeks will suffice or if a few more weeks of treatment are needed.  When this hand is finished, we will get a brief reprieve while his hand heals.  Then we will begin again with the left hand.  

Jim said he is doing ok.  This process has been completely exhausting, but not unbearable.  Itching tends to be his major complain right now.  He said it isn't burning, just horribly itchy.

10/21/14 Jim's right hand.

10/21/14 Jim's right hand

  

Two Men, Two Good Hands

Well, I guess Jim had been receiving a little too much attention lately.  Last Friday, our Morgan decided to ante up and enter the hand wars.  I really wish he would have let Jim have all the medical glory in this family!  While riding his scooter, Morgan took a tumble and caught himself hard on his left hand.  As the luck of the Leighty family would have it, (sorry to pass that down to you, son!) Morgan broke his wrist.  The first night was rough for him, but thankfully he has been doing quite well ever since.  He and I played hooky on Monday and headed off to visit a good friend who is also an orthopedic.  With x-rays in hand, Mo walked out the door with some serious plaster.  Just like with Jim, we are so, so, so grateful to be in good hands for this journey - thanks Bob!!  

Morgan 10/13/14

In the meantime, Morgan has been cheering about skipping out on his daily chore of washing dishes while I begrudgingly add another task to my list.  Having two guys in the house who can only use one hand is seriously lame.  Good thing my lawn mowing days are numbered!  And, thank you to the sweet neighbor who mowed it for me last week.  After an evening in the Urgent Care with Morgan, I didn't have the energy to refuse the help. 

Jim and Morgan 10/13/14

Well, the star of our blog probably needs a little spotlight time, too.  Jim saw the dermatologist today and had his chemo wrap changed again.  The doc thought his skin looked like the chemo was working as hoped.  In the pictures, the dark blackish spots are cancer.  When I asked for info for the update, Jim said he is completely sick of all of it - the endless appointments, the gloves, the itching and burning, and the seemingly constant need to explain his one glove.  Amen.  I feel the exact same way - so, so sick of it.   Wasn't this journey supposed to be over this summer???  

Jim's Right Hand - 10/14/14.
Two weeks of chemo cream.

Jim's Right Hand - 10/14/14.
Two weeks of chemo cream.

I am inspired, however, by all the ways my one-handed men are adapting to their world.  I overheard a couple of little tips pass between father and son regarding how to open jars or how to take a shower.  We can do this.  

 Meanwhile, Quentin and I will be doing a double high-five and hanging out in the hot tub sans arm baggies. 

Round Two and a Therapy Dog

Chemo Wrap Round Two!!  

Today, Jim saw the nurse to have his chemo wrap removed and reapplied.  According to him, the best part was being able to finally scrub his hand after a very long week.  The nurse said his hand responded well to the chemo and looked good for this part of the process.  

Over the week, Jim had taken off the outer medical wrap (the part that looked like an ace bandage mitten), leaving the plaster type wrapping underneath.  The mitten limited Jim's movement, causing his hand to ache and his knuckles to hurt.  He found being able to move more greatly helped with that discomfort.  

Unfortunately, the bare plaster needed something to protect it once the wrap was removed. So, Jim got creative!  He covered the plaster in 3-4 white cotton gloves to protect the plaster.  The stark white hand really drew a lot of attention and unfortunately wasn't able to contain all of the leaks from the cream.  Jim added a black sport glove over the other gloves to address the problem.  The black glove blends way better with life and also contains the drips.  With 4-5 gloves on his hand, it is surprising all the things he can still do - write, work, carry things, flip off a mouthy spouse :) .... just don't ask him to snap his fingers.   Luckily, the multiple glove approach received the nurse's seal of approval and was reapplied over the fresh layer of cream and plaster.

Jim's right hand after one week of chemo cream 10/8/14.

Jim's right hand after one week of chemo cream 10/8/14.
The blue marks on Jim's index finger were from the circle the doctor drew around a cancerous spot.

So, with his big, fat gloved hand, Jim is enduring a lot of teasing!  We are trying to figure out if he is more Chubbs or more Darth Vader.  He does do a mean re-enactment of Darth's force choke: 

https://www.youtube.com/watch?v=T-NvFIK_beQ  

I have heard him grumble, "You have failed me for the last time," more times than I care to count.  Well, at least there is a little levity with all of this!

As for side effects, earlier this week, Jim experienced some itching and burning sensations.  Those feelings quickly intensified after the new chemo wrap was applied to the raw skin today.  He seems to be handling it well, but we are nervous for the weeks to come as his hand will probably be more tender each time.  The spots the doctor considered operating on last week are definitely sore and noticeable.  Jim also has had a mild bout of nausea.  Nothing earth shattering, but a little uncomfortable.  We were told that can happen with topical chemo.  As luck (or fate or whatever!) would have it, we have the inside track to some great tips for dealing with chemo belly.  Thank you to our dear friend, Erin, for the care package and tips!  

On the happy side of life, our family grew by one four legged critter.  We now have a darling golden doodle puppy sharing our little home.  After months of planning, we were finally able to bring home our sweet girl, Alice, last Saturday.  She has brought so many smiles and so much joy to all of us already.   She really is the best therapy out there!  

Alice Leighty 10/8/14.  Almost 8 weeks old.

Jim and Alice.

Hey Chubbs!!

Jim's Fortune!  

So, just like his fortune, today was humorous, surprising, and kind of crummy, without being horrible...yet.  I am learning that this journey with Jim is completely unpredictable.  Completely.  

This morning, we headed to the dermatologist ready for surgery on Jim's right hand.  The doctor looked at both hands and started talking us through options.  We covered everything from operating on the right ..... or maybe the left, chemo on the right ..... or maybe on the left, and even the thought of surgery on one hand and chemo on the other.  YIKES!  Factoring in the number of spots on Jim's right hand (2 known cancer and 4-5 probable spots) and the obvious need to have one functional hand in day to day life (no, we don't have a bidet and there are some tasks that just don't fit within those "sickness and health" vows), the doctor concluded that topical chemo on his right hand and waiting to address the spots on his left was the best option for now.  We asked about how strange this journey has been and the doctor confirmed Jim is a very atypical case.  He hasn't seen skin cancer like this very often before, but definitely not in a guy who isn't elderly.  He also thought it was interesting how the cancer has come up in sections of lesions and not just individual spots.  How fun for us!!!  

The spots aren't really visible in today's picture, but the new questionable locations are between his thumb and pointer finger, on his fingers, and on the sides of his hands. 

Jim's hands - 10/1/14

Now, Jim is getting the "5- FU" treatment...sounds about right!  5-FU is officially called "fluorouracil."  It is a type of topical chemotherapy.  Today, the nurse applied a "chemo wrap."  (Not tasty like a club wrap or relaxing like a mud wrap.)  She applied a liberal layer of chemo cream, covered it in a plaster type wrapping, then covered it all with a layer of medical wrapping.  Jim kind of looks like he is wearing an ace bandage mitten.  He will keep this on for a week, then return to the nurse to remove the wrapping, apply a new dose of the 5-FU cream, and wrap it up again.  This will continue for about a month or so.  The doctor will keep a close eye on the process and make changes as needed.  When the chemo treatment is finished on Jim's right hand, it will be continued on his left.  Merry Christmas!

Chemo Wrap 10/1/14

While we were quite relieved to avoid surgery and the possibility of a skin graft, we are both very wary about the side effects of the chemo.  Our nurse is really awesome and was very candid with us.  She said it will burn, itch, and get scabby.  She shared that when we feel frustrated or ready to quit, to keep in mind that this cream only burns cancerous spots.  If applied to healthy skin, it wouldn't cause any sensations.  So, when we feel like throwing in the towel, she said to remember the burning means that it is actively attacking cancer.  By all accounts, this will probably be a difficult treatment for Jim to endure, but given the number of spots and how this keeps creeping up, this is probably his best option.  It definitely sounds like it is worth a shot.  

Sitting back and reflecting on Jim's new club hand... I have started referring to Jim as Chubbs from Happy Gilmore.  (Nothing short of supportive spouse in this house!)  This says it all:  (hey... Pop.... lots of swearing in this video, not parental appropriate at all.  Consider this fair warning!)

https://www.youtube.com/watch?v=qDR_yTik_xo

Let's just hope Jim's hand doesn't get run over.  Although, hook hand(s) would make Halloween extra special!  And, according to Jim, Halloween should be a year long celebration!!  He should be careful what he wishes for!

Surgery and the Stats

Jim received a call today from the nurse at Dr. Sear's office.  Unfortunately, this latest biopsy was also positive for squamous cell carcinoma.  Mohs surgery is scheduled for October 1st.  We're not really sure why the docs feel surgery is a better option than the chemo cream, but our hunch is that it has to do with the location, tenderness/discomfort Jim had been experiencing, and how quickly it popped up.  

Jim and I were talking stats today.... so here they are:
*This will be surgery #4.  (This will be the first for his right hand.)
*All total, Jim has had 8 confirmed spots of SCC.
*Jim has endured 10 biopsies thus far.
*I have said the "f-word" 14,783 times with reference to cancer.

While I have been mumbling some of my very finest profanity and sulking a bit, Jim is amazingly positive... so annoying!!!  To pull me out of my slump, we also counted some blessings.
*We both know that he is going to get through all of this.  
*Jim has an amazing team of medical professionals working with him.  
*Between the VA and his private insurance, this has not presented a financial problem for us.
*We have an incredible network of supportive family, friends, and coworkers.
*Throughout this entire journey, Jim's work has been completely supportive and understanding of his appointments, surgeries, and post surgical limitations.
*We have two amazing boys who are doing great.
*Vicodin and Fireball..... that is all.      

What's up with Jim?

The answer?  Jim is ok.  His left hand has healed well and is gaining in strength.  He still has some limited ability in movement and won't be lifting weights anytime soon, but otherwise he is ok.  

As for his right hand, Jim is scheduled to start using the chemo cream in October.  Due to the huge need to keep his hand out of any type of sunlight during treatment, both of his dermatologists felt waiting until the sun is a little less intense and the days are shorter was a good plan.  BUT.... Jim never really follows plans.  This past week, a new lump came up on the index finger of his right hand.  Due to the size, tenderness, and quickness of it emerging, we both were obviously concerned.  Today, he met with the PA in his dermatologist's office to have it evaluated.  She shared our concerns and biopsied this latest spot.  If the biopsy comes back positive, she felt another surgery would be likely.  So, for now, we wait for the results which should come in about a week.  Crossing our fingers! 

Jim's right hand 9/5/14

The new lump isn't really visible in the picture, but the state of his skin is.  As expected, the skin on Jim's hands is peeling quite a bit.  In addition to the extensive peeling on the backs of his hands, Jim's palms are extremely soft.  It isn't just Jim's hands that are involved, however.  The soles of his feet feel like he has spent many hours in a world class spa with a very skilled, perhaps overzealous pedicurist.  This peeling occasionally makes standing for extended periods of time somewhat uncomfortable.  He said the peeling seems to have slowed down some, but walking barefoot on smooth surfaces feels oddly tacky and unusual.  Jim has also noticed some small spots on his face peeling.  All of this is to be expected while on acitretin.  

So, how is Jim?  I would say, all in all, he is doing well.  Let's hope today's biopsy is not cancer....but after the summer we have experienced, he and I both have our doubts.  I will post when we know more.... keep those fingers crossed!    

Healing and Peeling

It has been about two and a half weeks since surgery and Jim's hand is healing well.  His skin graft came off last weekend, which did cause a little anxiety for both of us.  As we talked about it, though, we agreed not to freak out until we heard from the doctor on Monday.  His doc reassured us that as long as the site didn't appear infected, this would be ok.  The graft kind of worked liked a bandage, and would eventually come off just like the last one.  So far, to our amateur eyes, it appears that there is no infection and healing is progressing as expected.

Jim's left hand 8/14/14.
The healing graft site is at the base of his middle finger.

Jim's left hand 8/14/14.
A closer view of graft site.

 Jim's hands have started to peel more, too.  That is a result of the oral retinoid medication, acitretin, that he has been taking all summer.  The idea is it will help slough off the precancerous cells, helping the doctors determine which spots to address.  This week, some of the peeling has extended to his palms.  According to Jim, the peeling isn't painful at all, but some of the precancerous or cancerous spots are slightly painful, feeling like the exposed part of a blister when the outer layer comes off.  There are only a few spots like that, so it is not too bad.  In all, his hands do look better than they did a few months ago.

Jim is noticing some limited movement in his left hand, which we are hoping will be relieved in time.  He can't make a fist with that hand and has trouble grasping and holding things, especially things that have even a little weight to them.  He has enough swelling and tight areas that wearing his wedding ring has been uncomfortable.  For his birthday this year, he asked for a chain to wear his ring around his neck.  I told him he could put it away for awhile and it wouldn't bug me at all, but he said he wanted it with him.  So, he got a chain for his birthday.  He is so lucky that the fat gold, Mr. T chains were way out of my price range.  

Left hand 8/14/14.  The best fist Jim can make.
Some palm peeling is visible, too.

Left hand 8/14/14.
Jim's tightest fist and a little peeling.

Both of Jim's dermatologists, (the civilian doctor who has been doing the surgeries and his VA dermatologist) believe a good next step is chemo cream.  We're not really clear on the timeline yet, but will be moving forward after the left hand heals completely from surgery.  When the possibility of chemo cream was discussed earlier in this process, the plan was to use it for about 6 weeks per hand, one hand at a time.  We do have the cream and many pairs of gloves to cover the hand being treated.  When he starts using the cream, it will be essential that the treated area receive no sun exposure.  So, instead of Mr. T, he will be headed into the world of Michael Jackson!

Our little family is doing well.  The boys are enjoying summertime and bemoaning the inevitable approach of school.  They both seem to be handling the emotions of watching their dad's journey very well.  Quentin has moments of exasperation with how long this is taking, but generally is doing much better than at the beginning.  I have been slowly getting my own classroom ready to go and actually feeling excited to head back to work.  (I know, my teacher friends are all groaning at me right now!)  Maybe I just need the laughter, smiles, and excitement of first graders?  In any case, remind me of that feeling at the end of the first week when I am heading to bed before the sun, rubbing my feet and my head, while complaining about needing to build up my sore "teacher voice."  Jim has been really enjoying his job, feeling completely supported throughout this medical journey and his many appointments.  That has been a huge blessing for us.  He has also been working tirelessly on completing his latest audiobook, which is due by the end of August.  So, all in all, things are going well.  

Third Time's a Charm!

Guess what????

Jim ended up having his third surgery on his left hand today.  Let's hope that is all for that poor hand!  He had a new spot come up quickly between his ring and middle fingers.  The nurse had noted it when Jim was in last and the dermatologist shared her concern.  The cancerous spot on Jim's right hand, the one we thought he was having surgery on today, was similar in size and shape as the last time the doctor examined it.  Since it hadn't grown and the spot on his left hand came up so quickly, it looked like operating on the left hand again was the best choice.

Third Surgery 7/28/14

Third Surgical Location - 7/28/14

This new little bugger was indeed cancer, damn it!!!  In all, that makes five known cancerous spots on his left hand and one on his right.  Fortunately, the doctor was able to get clean margins with just one scoop.  As Jim's awesome luck would have it, closing up the surgical site did require another skin graft.  Can I throw out another damn it???!!!  The doctor again took skin from inside Jim's left bicep, using the exact same location as before, leaving him with just one scar there.

In addition to the surgery, the doctor froze two curious spots on Jim's left hand and four on his right, including the known cancer by his thumb.  At this point, another surgery has not been scheduled to address that cancer.  His doctor is going to see how it responds to the freezing and then decide the best course of treatment.  

Jim's right hand after freezing. 7/28/14

The cancerous spot on Jim's right hand after freezing.  7/28/14

Right now, Jim is in the good zone... the time when his hand and arm are both still numb and he can relax.  Just like the last two times, Jim left surgery tired and starving.  So, the boys and I treated him to a little lunch.  For now, he is doing great.... we'll see what the next few hours bring.  Typically, the evening of his surgery is the very hardest, but we are ready to go and he is staying ahead on his pain management.  

Post Surgery Pain Management - 7/28/14 

So.... Any News??

Thank you, thank you, thank you to all of our friends and family who are following our journey.  Jim and I both have received a few inquiries about how things are going.  We so appreciate your caring and concern, thank you.  Truthfully, we have been enjoying some summertime fun (with the hats, long sleeves, gloves, sunscreen, and as much shade as we can find) while enjoying a little reprieve from the dermatologist's office.  Jim's last surgery has been healing well, including his worrisome graft site.  Such great news!

So, right now, there isn't a lot to tell.  As much as he can, Jim has been babying his hands and keeping them out of the sun.  His next surgery is scheduled for Monday, July 28th.  We anticipate that surgery will be on his right hand.  As of now, there is only one confirmed spot of cancer at the base of his right thumb.  That being said, there are a few spots on both hands that are concerning to us.  When Jim had his stitches removed almost two weeks ago, the nurse indicated there are a few new spots on his left hand that will probably need to be addressed at some point, too.  Our hunch is that Dr. Sears will go ahead with operating on the known cancer on Jim's right hand, biopsy any concerns on his right, and schedule a later time to look at any further spots on his left.  This will be the first surgery on his right hand.  Jim is still taking the oral medication that is kind of causing his skin to peel or shed.  This process is supposed to help him slough off the precancerous spots, so the doctor can find the cancer easier. 

Thank you for checking up on us and wishing us well.  It has definitely been an interesting summer, but overall we are doing great.  I anticipate posting a surgery update early next week. 

Jim's Hands 7/20/14

Jim's Left Hand 7/20/14

Don't Reach into the Alligator Cage

Today, Jim saw his dermatologist to remove his wrapping and splint.  The skin graft came off, which is ok.  (I was shocked, too!) The doctor said it was like when a scab comes off a skinned knee, but the skin underneath still heals - something called "granulation."  According to the professionals, it looks like it is healing well.  The stitches also look good and his incisions are healing.  All good news.  I'm including some pictures.... again, they aren't so pretty.  Take care while scrolling.  The skin graft site and the stitches are visible.  Also, the swelling is going down, but his left hand and fingers are still a little bigger than the right.

Jim's hands 6/30/14

Left hand 6/30/14

We were brainstorming stories to answer the inevitable questions Jim will face regarding the appearance of his hand.  We thought games of mumbley peg or a wicked bar fight (...should have seen the "other guy") were decent, but Erin's suggestion of, "This is what happens when you drop a penny in the alligator cage," was our favorite.  Meanwhile, Jim thinks his resemblance to Sally from "The Nightmare Before Christmas" is uncanny!  

The stitches will come out next week, with surgery for Jim's right hand still scheduled for the end of July.  The doctor is keeping a close eye on the confirmed cancerous spot at the base of his right thumb.  That particular spot has grown some and actually split the skin.  At this point, it can wait a while longer while Jim's left hand heals, but it is definitely on the doctor's radar.  

Things in our neck of the woods are going well.  We have been careful with Jim in the sun - much to his chagrin at times, but as careful as we can be.  It is kind of amazing how often our hands are in the sun without even thinking about it.  Poor Jim got an earful when he rested his hand on the door of the car when the window was down.  He's lucky he got it out of the way as I rolled it up. 

Aside from being the sunscreen and shade police, I'm also earning my keep as the lawn boy, although the "K" I mowed in the backyard isn't as obvious as I had hoped.  I guess I need more practice!  

The boys are doing well.  Neither one of them objects to sunscreen anymore and both are helping out with more chores around the house.  Our sensitive Quentin has had his fair share of emotions lately.  After the last surgery, he started crying and asked me, "When are they going to stop cutting pieces out of my daddy?"  Seriously, that just breaks my heart.  We talked through it as best we could.  It was good to remind all of us that Jim has an amazing doctor, whom we trust completely.  We are completely confident that Jim is receiving the best care possible and that the doctor is doing what is absolutely necessary.

Thank you to the friends and family supporting us along the way.  This isn't an impossible journey, but the kindness and caring of others definitely makes it easier.  We greatly appreciate all the love that has come our way, in all its many forms - meals, cards, messages, phone calls, thoughts and prayers.  From the bottom of our hearts, thank you so much.  

Update from Surgery #2

When I dropped Jim off this morning, the plan was to operate on his right hand, saving the newest confirmed biopsy (the one on his left hand, biopsied during the last surgery) to be addressed next month.  The doctor carefully examined both hands and felt like it was best to make a change of plans.  Consequently, today's surgery was again on his left hand.  Factoring into the change was that Jim's skin graft is not healing as well as the doc had hoped.  He felt that Jim has been using his hand and moving it too much, causing some of the edges of the graft to separate.  Regardless of which hand was operated on, he was going to splint his left hand to help the graft site heal.  Obviously, having both hands unusable could pose a problem for daily life.  In addition to those considerations, Jim had two new suspicious spots pop up on his left hand since his last surgery.  The doctor decided to operate on the known spot and biopsy the other two, all on his left hand.  This time, the team would read the biopsy immediately.  If the biopsies came back positive, he would operate on all three spots on his left hand today.  In the following picture, the location marked "A" is the spot that was biopsied last time and known to be cancer, "B" and "C" are the new biopsies.

Pre-Surgery 6/25/14 - Left Hand

Unfortunately, both of today's biopsies came back cancerous and all three spots were surgically removed.  On the upside, we are so grateful they biopsied and operated on the same day.  That is a huge, huge blessing, saving us an additional surgery to Jim's busy dance card.  Luckily, the doctor was able to stitch up each new surgical site without needing another graft.  That is also a huge blessing.    

Post-surgery 6/24/14 - Left Hand

 The following picture shows his hands now.  His left hand is splinted and well wrapped.  The stitches will come out in about two weeks.  The pen marks on his right hand are around one confirmed cancerous spot and another concerning spot.  We are very grateful that they are keeping a close eye on all of these spots - marking them and keeping a detailed medical photo journal.

Post Surgery 6/24/14 

So, for now we are doing very well.  Jim is under strict orders to seriously baby his hand and take it easy.  We will be watching lots of movies and relaxing quite a bit in the days to come.  Thank you for the concern, thoughts and prayers.  We will just keep taking each day as it comes.

Skin Graft Update

The wrapping finally was removed from Jim's left hand.  Whew!  We were so thankful to learn the skin graft took.  I don't know exactly what the plan would have been if it hadn't, but I can't imagine it would be super enjoyable.  Little by little, the swelling is starting to go down in Jim's fingers and hand, too.  The stitches also came out of his donor site.  It looks pretty angry right now, but is healing well.  So, by all accounts, things are going according to planned.  Our next step will be surgery on Wednesday.  I am including recent pictures as Jim really wants to chronicle as much as he can.  If you're a little squeamish.... skip these :)  

Jim's hands 6/18/14  The skin graft is between his last two fingers.

The donor site

Biopsy Results :(

Yesterday, Jim received a call from his dermatologist regarding his biopsy that was taken during surgery last week.  With a scowl of frustration, he looked at me while still on the phone, and shook his head.  Damn it!  I heard him murmur a couple of responses and then said, "Yes, July 28th would be fine."  So, Jim will be facing another Moh's surgery, (#3 for those counting), on the 28th of July, the day before his birthday.  The biopsy was squamous cell carcinoma and the margins were not clear.  It is another spot on his left hand.  His second surgery is coming up next Wednesday, June 25th for his right hand, with this newest scheduled surgery following about a month later.  LAME!

We have had an interesting life since Jim's surgery.  Jim has been reading different websites regarding how to go about daily life with just one hand.  He has learned a few tricks, but still finds tying his shoes to be a little difficult.  Driving has been ok, thank goodness he has an automatic.  And, showering requires a special plastic bag that covers his hand.  He taped gallon ziplocs over his hand for awhile, but we found a thick plastic bag in the medical supply section at the drug store.  That has been working well thus far and will easily transfer to his right hand when the time comes.

The spot where the donor skin sample was taken from his upper arm is sore and tender, but healing well.  I was surprised at the length of it, probably about 2-2.5 inches.  Jim will see his dermatologist tomorrow and get his stitches out of his donor site and finally unwrap the bandages from his left hand to see if the donor sample "took."  His fingers, his hand, and his wrist have all been swollen and sensitive.  We are hoping that when the wrapping comes off and some of the compression is released, that the swelling will be relieved, too.

Jim's hands 6/16/14.
The dark spot visible above his wrapping is the latest in his cancer family.

As for life around here, I think we are doing pretty well.  Quentin, our 7 year old, had a rocky road at first.  We picked him up at the bus stop the day of the surgery, and the boy crumpled into a soggy ball of tears when he saw Jim's arm in a sling.  He really didn't understand the aftermath of surgery.  Unfortunately, we didn't realize that he thought "surgery" meant "Daddy will be all better."  I talked to him and calmed him down, but on the two block walk to our home, he grabbed onto Jim's legs and broke down again.  He recovered ok and clung a little more than usual to Jim's side.  The next day, he set off to school seeming just a little out of sorts.  Thankfully, when his sadness and tears persisted at school, his sweet teacher took his frustrating work away and had him write a card to Dad.  I get tears in my eyes every time I peek at his words.  We are so thankful our little man was in such kind, caring hands while at school and struggling with knowing Daddy isn't really invincible.  

Dear Dad,
I'm not feeling good at school.
I'm getting frustrated thinking it is something, 
but actually I'm scared for you.  
Sincerely, Quentin

Morgan is handling things fairly well.  He told me that the day of Dad's surgery, they were writing things that made them grateful on the board in class.  He wrote he was grateful his dad would have normal hands again.  I think of the things he could have written that would have been pretty typical for an 11 year old boy - his new video game, a lego set, his bike, summer vacation just a breath away - and am touched that his heart was with his father on that day, too.  I know they both can drive us crazy and test our patience, in fact they are quite skilled at that, but it is nice to see this side, too.  We have good boys.

As for me, I am learning to tie shoes without asking, "Did you ask three friends to tie it first?" and am not minding being the chauffeur at all.  I also make a pretty decent errand runner, but am hoping my days of late evening narcotics runs to Walgreens are a thing of the past!  We did make a recent trip to Costco that taught me a lesson about reserving my teasing jabs for private locations, too.  After pushing our overloaded cart through a very crowded Costco on a Saturday afternoon (never again!), I started hassling Jim while I loaded our things into the car.  I *might* have said something about my "one armed husband using 'cancer-lite' as some viable excuse to not load the car."   Oops, yeah, I saw the stares of the disturbed couple as they scurried past.  I don't think most people get our dry, crass humor.  Of course, it didn't help that Jim put on the perfect look of total dejected emasculation and only laughed when they were completely out of earshot.  Jerk!

In any case, we have coined the term "cancer-lite" in talking with our kids.  They really know quite a bit about breast cancer and we were trying to help them understand that while this is serious, it is different.  Daddy is going to live, it won't be easy or pain-free, but he will definitely be ok.  So, as we were talking with the boys one evening, I said, "What Dad has is like 'cancer-lite.'"  Well, the term has stuck.  BUT, teasing Jim using that phrase in front of strangers was a huge faux pas, my bad!

Jim is handling things very well.  Of course, we both had a moment or two of being completely pissed about the latest cancerous spot and another surgery, but we were distracted last night with some good company, pizza, and wine.  That seemed to help!!  Erin and her boys came over and I think talking to a cancer survivor was good for both of us.  It at least helped me keep things in perspective.  This really is "cancer-lite" in comparison.  Frustrating, annoying, painful, life changing, and total B.S., but he will be fine in the end.

Surgery #1 is in the books!

Jim's hands - 6/9/14, pre-surgery.

Jim had his first surgery this morning.  Thankfully, it was successful!  Today, they addressed the spot between his pinky and ring fingers on his left hand.  The doctor was able to get clean margins (i.e. all of the cancer in that location) with one sample. Whew.  Jim and I were both worried about how far they would have to go. He did have another concerning spot on the same hand, so the doctor took a biopsy from that location.  

In order to successfully close up the surgical site, a skin graft was needed.  The doctor took a donor sample of skin from Jim's left bicep area.  He had told us that was a possibility when we met with him in May, one we were hoping to avoid, but on we go!  So, for now, Jim's left bicep is healing from his donor site, his left hand has one biopsy and the surgical location.  Jim will need to really baby his left hand for awhile to ensure the grafting takes and his incision heals successfully.  His post-op visit and stitches removal will be next Wednesday.  Surgery for his right hand is scheduled for June 25th.

Q is in charge of the healing snuggles at the moment.

Surgery Dates Scheduled

After some careful consideration regarding how to continue treatment for Jim, we decided the best fit option for our family was to pursue a civilian doctor.  We are quite grateful to the dermatologist at the VA hospital who finally figured out what was going on with Jim's hands, but had to make the choice between traveling for surgery or checking out our civilian Spokane options.  

Today, we saw Dr. Sears (thank you for the many recommendations!!) and have two surgeries scheduled for June - 9th and 25th.  Dr. Sears recommended proceeding with the "Mohs" surgery.  We had been researching that procedure, as Jim's VA doctor had mentioned it as well.  If you are really curious, the site http://www.mohscollege.org/about/ has good information.  His first surgery will be on the spot on his left hand, between his pinky and ring fingers.  In addition to the surgeries for the two confirmed SCC spots, Jim will be starting a medication (acitretin) to hopefully slow the growth of the SCC cells and clear up some or all of the precancerous cells. 

It was interesting (and relieving!) to learn that Dr. Sears has seen this type of thing before - mix of cancer cells and actinic keratosis covering a larger area.  He agreed with the G.I. that the immunosuppressant drug (imuran/azathioprine) is probably the culprit.  He said it happens sometimes when patients have been on immunosuppressants for an extended time period and also agreed that stopping that medication was a good call.  So, overall, we both are feeling very relieved to be in the right hands moving forward and to have a plan in place.  Thank you for the well wishes and positive thoughts.  We both are feeling very positive.    

Some Good, Some Bad

Finally, the biopsy results are back.  Jim learned that the biopsy at the base of his thumb is squamous cell carcinoma (SCC).  The other biopsy is "hyperkeratotic hypertrophic severe actinic keratosis" - which I believe is like a precancerous spot/condition, often found with squamous cell carcinoma.  So, the good news is that this is still SCC and NOT melanoma, and only one of the two new biopsies was cancerous.  Whew.  The bad news is that there is another positive SCC biopsy (one on each hand now) and that the margins were again not clear.  Jim's dermatologist did cauterize the biopsy location fairly aggressively and is hopeful there are no longer SCC cells present there.

At this point, we have some questions to address with the dermatologist and then need to explore Jim's treatment options, including requesting a referral to a civilian doctor.  Jim will need surgery on his previous biopsy site and possibly this current spot by his thumb as well.  Our only VA surgical options would require traveling to Seattle.  Both of us would much prefer to work with a physician in Spokane.  Jim does have medical insurance, so this option is looking promising for us.  Thank you for your referrals, we have a couple of names of doctors we will look into contacting.

Jim's sores from his latest biopsies are healing well.  He has finally shed his daily hand wrapping, as the skin is finally not as sensitive as it had been.  We both are doing very well.  I think our biggest frustrations stem from things moving slowly, but we are hopeful and positive regarding our next steps and how this will continue.  Thanks for your support and well wishes.  We will definitely get through all of this.

Some Interesting News

We might have figured out a major factor that has led to Jim's skin cancer.  Last week, his dermatologist requested that Jim visit his G.I. doctor to discuss discontinuing his Crohn's medication.  This med comes with a strong warning about increased sensitivity to the sun and much higher risk of sunburns, even after just a short amount of time in the sun.  Thankfully, Jim's G.I. doc was able to work him into his busy schedule today.  

Jim has been with this doctor for well over a decade.  He has always been a blessing to us - from helping me understand this disease that had sent my new hubby to the hospital, to overseeing his resection 9 years ago, to the continued care in the years since that surgery.  We have always felt extremely confident that Jim has received the best possible care for his Crohn's.  True to form, his G.I. began researching Jim's situation, medication, and history, as soon as his latest medical files crossed his desk.  He believes, beyond a shadow of a doubt, that the medication Jim has been on for quite some time is the cause of the skin cancer.  The research he did concluded that long-term use of this medication can lead to skin cancer.  Starting today, Jim is discontinuing that medication.  It will stay in his system for about three months, so hopefully his Crohn's disease will handle the change well.  In addition to monitoring his Crohn's symptoms carefully during this time, Jim will also have to be extremely vigilant about sun exposure as those side effects will also take time to wear off.  I suppose his wife's extra nagging has been appropriate!  And, that sun hat he bought years ago is suddenly no longer hideously unattractive. :)

We have not heard from Jim's dermatologist regarding the latest two biopsies.  While it absolutely stinks to wait, it doesn't necessarily mean bad news.  Jim did learn his dermatologist is out of the office this week, so we cannot read anything into the length of time for results.  She is scheduled to return Monday.  Hopefully we will hear something soon.  In the meantime, his biopsy sites are healing well. 

The spot near the base of Jim's thumb is one of his most recent biopsy locations.

Jim's hands 5/1/14