Fever Free for Two Days, Goodbye Hospital, Hello Bed!

Dad's going home: they're packing and getting discharge instructions now.  Pneuminua is clearing, and white cell count getting back to normal levels.  He'll soon be hibernating to catch up on his sleep for the next few days :)

Prayers, Needed, Please!

Dad was supposed to start his last chemo treatment today; but he was admitted to the hospital on Monday for a little pneumonia.   He's had a cough for almost a month.  First they said he had a cold, but the cold caused post-nasal drip and a cough that's been hanging on for weeks.  A chest x-ray revealed pneumonia in the top and bottom lobes of the lungs.  The doctor acts as if this is a minor bump in the road.   A low-grade fever started Saturday, but by Monday morning, it reached the 101.4 limit.   Like a tide, the fever seems to go up and down throughout the day.  I was able to chat with him for a little while tonight, but we had to hang up when he started coughing and feeling bad. Tylenol is due, and the nursing staff is slowly making rounds.   An infectious disease doc arrives tomorrow to assess what's going on.  Hope he's able to make things better.  Prayers are always welcome and appreciate. 

Progress in the Right Direction!

          Dad had a follow-up appointment with his oncologist today and everything is looking very optimistic:  his blood numbers are good, he's not in pain, and he's gained (drum roll please): 

 *** 16 POUNDS ***

 in the past three months

          Chemo is set to end in November, which will be followed up by a PETscan.  Dad is guarded in his acceptance of the good news.  We keep him positive by talking about our daily happenings and planning for the future.  Chemo, however, sucks, and he tends to get depressed often because his days/nights are consumed with managing his side effects.  Taste buds change, vision changes, body temp  & blood pressure fluctuates (he's cold most of the time), fevers must be monitored, bouts of constipation & diarrhea become the norm, his mouth goes into "convulsions" if he eats/drinks something cold, and touching cold objects causes the sensation of being cut by glass.  On top of that, his nephrostomy tube becomes painful at times, along with the hassle of carrying around a bag of urine and have to monitor/empty that throughout the day.   

   

        Talking with others helps him think about other things rather than dwell on the situation and play the "what if" games that human brain sometimes chooses to dwell upon.  So if you're reading this and wonder what you can do to help or make a difference, a phone call is always deeply appreciated.   And all you have to say is,  "I just called to say "Hi" and let you know you I'm thinking about you;" after that, I'm almost certain he'll ask what's going on in YOUR life.  At least, that's how my daily phone calls usually turn out.

       Dad was particularly happy after his chemo treatment last week.  Another older, lonely gentlemen, who had a track record of sitting alone quietly during his treatments, crossed paths with my dad.  And my dad being the greatest talker of all time, kept the other patient (and gathered a few other patients) engaged for hours.  The staff and the other patient thanked my dad for helping making the guy's day at chemo more bearable.    The power of the human spirit is amazing.   And personally, that's what I think our maker calls us to do:  help and love one another. 

      Thanks to everyone who has helped and supported dad in this journey.   And a very special thanks to Mike's Aunt for sending dad him Omaha steak burgers this week.   On his "off " week of chemo, Dad has a serious craving for hamburgers; he attributes his 16 lb gain to the burgers.   When we talk in the evenings, he'll say, "Guess what I had for dinner?"   And then he goes on to tell me (in great detail) how fabulous the burgers taste.   I'd also like to thank those who have sent cards, fruit treats, apple pies, lotto tickets, and care packages; your kindness and love helps keep him going :)    

Until next time,

   Terri

A Much Needed Break

Dad is doing pretty well, and we're celebrating the half-way point of his chemo treatments.  (Ok, I'm celebrating silently inside my head; he, on the other hand, has a good deal of trepidation about making a big deal about being at the half-way point.)

After a week of feeling absolutely terrible, having no appetite, diarrhea, and low platelets, the oncologist decided Dad could have a one week break from the regimen.  He loved having that week off.  He ate and enjoyed hamburgers almost 5 days in a row!   That metal taste from the chemo subsided, allowing him to enjoy eating again... and eat he did.

Yesterday, he started another chemo treatment, and although his spaghetti dinner was well tolerated, he said he can tell the side effects of the chemo are ramping up again.  Good news is that his platelets were back up to a healthy number - another reason to be happy. 

I was teasing him tonight suggesting that perhaps he'll grow a full head of hair when this is over!  He liked that idea very much and we shared a good laugh.

Happy 4th of July!

Hard to believe it's been almost an entire month since providing an update.   Dad is tolerating chemo treatments pretty well.  He's had lost of odd side effects: sensitive to eating and touching cold things, food tastes funny, he's always cold, nosebleeds, sensation of air blowing up into the nostrils, and a list almost as long as my arm -- all of which (the doctor tells him) is normal.  He's getting used to anticipating when his "real bad" days are gonna be, usually Thursday-Friday-Saturday after getting the pump removed, which happens every other week.

As of last week, his platelets were a little low.   More blood work will be done Monday, and next Tuesday will begin round 3 (of  6).  Looking forward to celebrating the half-way mark!

Other than occasional depression, Dad looks real good to me.

Thanks, as always, for your love, support and cards.

Feeling Yucky

Last week began round 2 (of 12) on chemo.  One round = two weeks, one week on the medicine; one week off.   Round 1 wasn't too bad; round 2, however, was miserable.   Lots of side effects are surfacing now:   hiccups, being cold and cold sensitivity (touching something cold results in feeling a stabbing pain), some food tastes bad, lack of appetite,  pain in certain parts of the body, wide-ranging bowel habits, and stomach aches, and nausea. 

Boredom has set it in, big time, too.  Mom tells me phone calls and cards really brighten his day.  I call daily, (sometimes several times a day).  I wish I could think of a project Dad could work on at home.  Our boat, and all off the fish tales and maintenance issues we encounter with it, has been a good distraction for him.  Brandon caught a 34" Rock fish Friday evening,
and Dad was tickled pink -- Brandon beat Dad's record by 2".   Our first year with a bigger boat and the kid knocks it out of the park.  

And the Sickness Begins

The nurses told my dad the steroids would wear off and he'd start feeling pretty sick on Saturday.  We'll see what tomorrow brings, but my dad tells me he started feeling crummy today.   He said he didn't have much of an appetite, but he's eating. 

First Day of Chemo Down!

Dad showed up for chemo bright & early (8:30) and was prepared for a long day, but they were finished by 1:00 p.m. The nurses did a fabulous job of keeping dad calm, cool, and collected (a little Lorazapam always helps too!).    I talked with him for a while as he was resting in his easy chair at the clinic, overlooking the beautiful Chesapeake Bay and a beautifully landscaped garden.   Later this evening, we talked again and he mentioned already starting to feel outta sorts, but he also hasn't slept for two days, stressing about today, so that might have a little something to do with it, too.   The nurse said he can expect to feel the effects by Saturday.    He goes back Thursday to get more meds, and he's "off" next week.

My prayers for today were answered:  no allergic reactions and a non-complicated start to chemo!

Chemo Starts Tomorrow!

Dad's visiting nurse said today would be her last visit; she left him with lots of cautionary advise (she is a cancer survivor), which has him feeling as if he'll be a hermit for the next six months.  Please keep your prayers and cards of support for him--it's a comfort to know others are pulling for ya. 

On the positive side, my dad came out to the boat yesterday and went for a ride, which totally made my Mother's Day :)

Skinny as a Rail

  Visited with my folks today to deliver Mother's Day gifts to my Mom--she already declared she wanted to spend Mother's Day planting flowers in their yard (her therapy).  Dad is being cautious to go out in public for fear of getting sick before he starts his first round of chemo on Tuesday.   And he's declared he's planning on being house bound for the next six months.  He said he's had diarrhea for 30 hours straight since Friday  and almost went to the hospital last night (it was the absence of a fever that kept him at home).   Mom thinks his diarrhea struck after he started reading the 15-page cancer booklet the doctor gave him earlier in the week, chocked full of precautionary statements, side effects, and what to expect during chemo.   Understandably, that would scare the stuffing out of me too.  My poor dad is down to 150 lbs.   I'm feeling helpless.   I spend as much time a I can talking with him and trying to accompany him to doctor's appointments.  Talking about the boat, the garden, the kids, and politics, gets his mind off his problems, but that only works for a little while.   Tried to take my mom out to lunch for Mother's Day, but she wanted to stay home with my dad.    Lots of friends and family ask, "What can I do?"  Cards and prayers lift him up.  This is a big week:  the start of chemo.  He'll have to stay at the hospital for 4-6 hours after they start injecting the drugs in him to see if he's allergic to anything.   He already has a list of medicine allergies as long as his arm.  Praying for the best. 

Here We Go - Chemo Starts Tuesday

Doctors did not want to delay in starting the chemo, so they moved it up to Tuesday. 

Dear God,

Please send your healing Spirit and allow these chemo drugs to work!

Port-a-cath Thursday.... Chemo Begins May 14

Dad's getting ready for chemo:  visiting his dentist, heart, and eye doctors to get some of his maintenance appointments out of the way.   The day after tomorrow, the port-a-cath gets surgically implanted in his chest.  He'll start chemo May 14.     

Today was a good day.   My parents tackled several doctors appointments and did some shopping!  

Optimistic News from the Doctor!

Dad had his first appointment with his oncologist today.   The doctor said he was very optimistic about dad's situation, and he encouraged him to do whatever he wants to do. 

Next steps:  1.  meet with the oncology nutritionist, Monday
                    2.  get the port-a-cath surgically implanted in the chest next week
                    3.  start the chemo, mid-May
                    4.  have another mini-surgery to replace the kidney tube; from what I understand,
                         they only last for about three months.  That will take place in a few weeks.

My dad has a good outlook, he's getting his appetite back, and he seems strong!   The kidney tube is a hassle, but he's seems to be getting used to it.   Thanks to everyone for prayers, cards, treats, and support, it all means so very much to him. 

First PETScan Scheduled for Monday

      On Monday, Dad will get his first PETScan.   Please pray for a good result on the PETScan, strength and good health as he progresses through his chemotherapy treatments.    Don't have an exact start date for chemo yet, but I'm sure we will get one very soon.

     We had a nice Easter with my parents.  Holly wanted to do an Easter egg hunt at grandma's house, and there was my dad, limping along in the front yard, looking for eggs along with her.... love my dad.   I think my dad felt sorry for her because her BROTHERS found most of the eggs.   Next year, she'll get a 10 minute head start.

       Dad seems to be getting used to the nephrectomy  tube (kidney tube).... not hearing too many complaints about it, other than it's difficult to sleep and shower.   The kidney still seems to be working nicely, but I don't know what the magic numbers are the doctors are looking for in terms of urine output.   At this point, dad is recording number - the doctors will assess the functionality of the kidney, based on the numbers, in a few weeks.

     

 

There's No Place Like Home

The hospital took forever to release Dad today.  He had two IV iron treatments before he went home. Doctors are all still very pleased.  Next week:  PETScan and soon after that, insertion of the port-a-cath (a catheter inserted in the chest for easier delivery of drugs).  He has his down days.  Cards and calls lift him up.  Once again, we are all exhausted after a few days at the hospital. The crummy food, noise, uncomfortable beds/chairs, constant interruptions, and random screaming patients wear on the nerves after a while.  A good night's rest and maybe a glass of wine is in order!

Dad is Progressing Nicely, Coming Home Tomorrow

The weak kidney appears to have jumpstarted itself and the other good kidney is doing its thing too.  Lots of aches and pains today, three iv sites shut down at the same time, but a new iv was just put in. My dad has been up walking today, and at the moment, chowing down on a fresh fruit cup I brought up from the snack bar.  The urologist and vascular docs have been by--they are pleased and say everything went great yesterday and he's doing fantastic. They call him their star patient who had an impressive gathering of top docs working on him yesterday (eight in all).

After dinner, the oncology doctor came by.  Chemo will begin around the end of April/early May, and will last for 6 months minimum.  (Two weeks on, two weeks off.)   Iron treatments begin tomorrow to build up Dad's strength.  PETScan next week.

Phase 2 Complete!

Kidney was saved; Dad did great!  Waiting to go back and see him.

Phase 1 of the surgery went well!

First part of Dad's surgery went perfect!  Dad was in a $20M OR specifically designed for risky vein procedures.  Both docs came out with huge grins. Stent came out without complications.  Phase  2 is underway:  inserting a drain tube from the weak kidney.  They tell us this is the easy part of the surgery...stay tuned.

Got My Dad to the Garden Today!

What a beautiful day!  Dad managed a trip to the garden.  While he stayed in the car, he enjoyed the spring breeze with windows rolled down and the car door open, chatting the whole time to Mike and I as we were gardening.   We're getting a boat tomorrow... not that I need a boat right now, but dad loves boating, and so do my boys.  In anticipation of tomorrow's test drive with the boat, dad made us a checklist of things for us to inspect.  His mind is still cranking, and his attitude is good.  He received several cards in the mail, a care package from Alaska, an Edible Arrangement, and a visit from a neighbor, all of which lifted his spirits and made him feel special.    Overhearing my mom talk on the phone to people about the crap going on with him now brings him down... can't blame him.  Every time I tell Dad's story, I get a little down too.   "Significant chance of recovery," has been my mantra since yesterday morning.  

Post Nuclear Scan Follow-Up on Friday 4/11/2014 Another Bump in the Road, a Surgery Planned for Tuesday @ Noon

We met with Dr. Chang and an outstanding, well spoken associate, Dr. Skylar who blew us away with all of the thoughtful consideration they had been putting into dad's situation.  All good news to us.  They still feel that Dad has plenty of skin in the game:  the prognosis with colon cancer is pretty good (a "significant cure rate" was the term used).   He just needs for the chemo/radiation to zap any rogue cancer cells.  Dr. Skylar said they did an excellent job of removing the cancer cells during the surgery.  As I'm writing this, I'm now realizing that Dr. Skylar was probably present during the 7-hour mega surgery too; after all, they told us two urologists performed that surgery.

Here are the options, all of which revolve around  removing that shifting J stent and the addressing what to do with the weak kidney.

1) save the kidney
2) remove the kidney
3) get rid of the ureter and leave the kidney alone in the body (no harm done they tell us)

Benefit of keeping the kidney:  the intensity of the chemotherapy is based upon the strength of the kidney since the chemotherapy is excreted through the kidneys.   In layman's terms, your body gets rid of the unwanted/unused/unneeded chemo drugs through urinating.   More kidney function means more chemo  drug can get in and do it's job of killing the cancer.

At present, dad's good kidney operates @ 79%, the bad kidney operates @ 21%, which is pretty good by their account; at 15% function, they recommend removing the kidney.

Here's the game plan:

Dad reports for surgery on Tuesday.  This is what they're going to do:

1) they're going to look at ways to remove the J stent.  It's shifting and could cause blood clots or a puncture in a major vessel if left unattended or gets damaged during chemo/radiation.  Dad is on blood thinners now to prevent blood clots.   He's been instructed to walk to minimize the clots as well.

2) they're going to do some type of fluoroscopic test in the OR to test once again the viability of the weak kidney, and if they decide to keep it,  they will insert a drain tube from that kidney. The drain tube will come out of his back, it will be thinner than a coffee stirrer/straw, and it will collect urine in some type of colostomy bag.   The bag will be either attached to his hip or on his upper thigh, and this will stay in place until after the chemo.   Although the kidney is weak, it can still benefit dad through the chemo.  They will perform reconstructive surgery after the chemo to fix that ureter tube.  

At present, there are no blood clots, more good news, but they need to be very careful during the removal of the J stent at the top of the kidney, it comes close to major arteries.   Five very skilled surgeons will work on Dad Tuesday.   There are some risks with bleeding, infection, clotting, and creating a hernia, but they explained how they work carefully to minimize and control all of those risks. 

Best case, dad will be in & out within 90 minutes with a small incision in the the groin and another in the lower belly.   Worst case, they'll re-open about 4" of his upper abdominal incision to stop bleeding, if necessary, and he may possibly have another large incision on his side if they remove the kidney.    We left the appointment feeling grateful for the many excellent doctors who are doing so much work to help dad through this "bullshit" (doctor's term)  which by their accounts, has a good success rate.   We are hopeful.  

We went to breakfast after the consult and covered many topics of discussion:  acceptance of what is, what will be, faith, salvation, boating, the military, and how impressed we were that the doctors are doing so much for Dad.   Mom & I reassured him repeatedly he is worth it and the doctors obviously think so too.   We are all tired from sleepless nights and vowed to spend the next few days catching up on much needed rest as we gear up for the Tuesday's surgery.   They expect dad to stay overnight for observation.

Post-Op Updates

Monday, April 7, 2014 - Post-op appointment with his general surgeon went fine.    His cancer, by definition, is classified as "advanced," since it invaded multiple organs and was found in one lymph node.   But one lymph node is better than multiple lymphnodes, so we'll take it.  Doctor said they got all of the cancer, but they'd need to do chemo/radiation.   He also alerted us that the cancer, being cancer, could come back, but they are hopeful the chemo/radiation will kill off rogue cells. We were instructed to move forward with scheduling an appointment with his oncologist - that first meeting is scheduled for the first week of May. 

Tuesday, April 8 - Follow-up appointment with Dr. Chang, the urologist who worked on Dad during his 7-hour mega procedure, was more involved.  Dr. Chang hinted to concern about the movement of the stent and the function of the remaining kidney that was being supported by the J stent.   That was the tip of the iceberg....  After we left the appointment, Dr. Chang was busy behind the scenes consulting with his team to re-assess my dad's situation.   After several phone calls dad received during the evening, he was instructed to have a nuclear study done on Thursday morning, April 11, to evaluate the function of the kidney.  Chemo/radiation has the potential of dissolving the J-stent, so they needed to assess whether all of the trouble with the J stent was worth it:   a non-functioning kidney would have made the J-stent work useless.

Background

On March 21st, dad (aka Hambone) underwent a major, 7-hour surgery to remove cancer growing around his colon and blocking one of his kidneys.    He's recovered remarkably well, the doctors are positive and have not given up on my dad yet, which gives us hope.  Before Dad was released from the hospital on a Sunday evening, March 29, he had a catscan to check the placement of what's called a "J-stent" which was temporarily put in place to encourage tissue growth around the ureter tube which stems from kidney to the bladder.  The attending doctor who read that report said the stent did indeed move a little, but the stent was fine.   Dad continued to recover well at home and had a visiting nurse and physical therapist a few times a week which gave him peace of mind and helped him recover with appropriate exercises to make him stronger.


Why Hambone?   All of my dad's friends call him Hambone.   Makes for a better blog name than "Go Daddy"  or  "Bill's Adventure."