Last night

Karen had back pain last night and had trouble sleeping. Her back spasms are from prolonged sitting and bed rest. Please pray for relief from back pain and increased appetite.

Say Goodbye to JP

Today Karen’s JP tubes were removed! Her telemetry is also gone. This will make walking easier as she no longer has to tape the tubes down. Now that she is unencumbered her lap times will decrease; the floor lap record may fall. Watch out Captain Underwear! Her remaining PICC line administers medication and food. Today she’ll get an appetite stimulant. Please continue to pray for relief from nausea and for her appetite to return.

White blood count

Ann arrived safely at the hospital and she’s already watched a movie with Karen and was giving foot rubs when I called. I didn’t know she knew how to give foot rubs. I know this isn’t about me, but …

Karen’s white blood count is back up. Her catheter is out. Her fever hasn’t spiked again which surprised her doctor. Her energy is high and she just finished doing 'laps' in the room (not walking the halls due to lower energy and infection concerns). “She is doing great” and is surprising the doctors.

Cracks me up, two swimmers talking about doing 'laps' in a hotel room. Finished a 150 today but didn't do any flip turns. The last 25 was a no breather. Wonder if they would wear those funny caps for morning workouts?

Cooling Blanket

Last night Karen received a cooling blanket and Tylenol suppository which reduced her fever to 99. She also received a muscle relaxant and more wires. She is now hooked up to a pulse monitor (the finger) and a blood pressure cuff.

Ann heads to D.C. this morning and is leaving early to beat the I-95 holiday traffic. Overheard Karen last night saying she is looking forward to Ann's visit but she could be hallucinating again. She’ll be the first advocate to arrive with a pad and pencil rather than a laptop. Might be rough.

Fever

Karen has a 102 degree fever. They don’t know the cause and are taking urine samples, blood cultures, and chest x-rays.

Additionally, her white blood count is low. This occurred two days ago and she received Neupogen. She responded well to that drug and her counts were back up so they took her off it this morning. She'll return to this therapy.

They diagnosed this condition as Febrile Neutropenia which can occur after chemotherapy.

In addition to being treated with Neupogen, she will be getting three antibiotics for the next three days along with Tylenol.

Her hallucinations are still occurring due to the pain medications. They are going to continue to administer the same pain medicines until her temperature and white blood counts return.

Karen’s red blood cell count is also down. They are going to give her Darbepoetin.

Good news.

She hocked a luggie yesterday and another one today. Her distance wasn’t very impressive but that’s another goal to shoot for. She is also passing gas – painful but relief at the end.

While talking with Kathryn, they had the 3rd fire drill. This means Kathryn and Karen can’t leave the their penthouse. Like Karen is going to leave the room anyway.

This posting has lots of long words that mean gobble-de-gook to most of the readership. However, her prayer requests are simple - lower pain and fever.

Kathryn's on her way

We managed to get the kids off to school and Kathryn to the airport on time. She's in mid flight as I write. She should land in DC (Dulles) around 3:30 (United #902 for those who want to track it) and expect she'll be at the hospital between 5:00 and 6:00pm depending on baggage claim and traffic.

Traveling with several books, DVD, iPod and a PC, she actually looks like her technologist brother (or husband) traipsing through the airport. She'll get the real fun when she goes through security with all that equipment.

I know she's looking to this trip with an odd combination of anticipation and trepidation, but is looking forward to being able to give Tom a break now that Mark has left.

Tom, on behalf of the outlaws, just let me wish you luck with the twin language thing. I think it will be in hyper-drive this week. You may never understand what they're saying. In fact, I imagine that Kathryn will quickly determine that there are seventeen meanings of smack smack, much like the Eskimos and words for snow.

God bless you, and thanks for all of your postings keeping us up to date.

Mike

Message from Karen (1)

During today’s chemo treatment, I asked Karen if she wanted to send a message to the blog.

“Dear Friends,

I can feel your support every time I get relief. I’m getting sleepy now. I don’t know if anything I’m saying is making sense. Mark, maybe we should do this another time.”

Patient Advocacy

My attempt to capture some lessons learned.

Watch what the nurses do so you can do it when they aren’t around. Learn how to adjust central lines, unclog NG tubes, drain chest tubes, find supplies (blankets, gloves, plastic bags), and anything else to make life better.

Learn what all the wires and tubes are connected to and why. When something runs out, you don’t have to say “something is blinking again” but can say “we need more TPN - stat” … and with authority.

Don’t wait for the intercom to bring someone running. Go to the station and ask for help. Try being nice about it too.

Stay overnight (see previous post)

Write down what happens so you remember later. Like where you put your parking ticket. And if you have time, jot down what was administered when.

Ask a lot of dumb questions. Like “Can we get a light bulb?”

Know what is next. Like “when do the dreaded chest tubes come out?”

Don’t whisper with the nurse while glancing nervously at the one in the bed.

Don’t touch the JPs without gloves (wasn’t told this until the third day) – ask more dumb questions sooner. Like “Why do you wear gloves to do that? Should we?”

Don't stop praying.

Know what she needs. Make her smile, but don’t go so far as to make her laugh.

Ask for what you need. Like “We need gloves larger than mediums. We also need a light bulb.”

Stay in touch. Loved ones want to know what is going on.

Bring a friend. Tom is great.

Say you’re 1/3 done, not 4 more hours.

Cover their behind when they can’t.

Be patient. It may take more than 4 days to get a light bulb.

Do it better next time. Improve when you can. By the time we’re done with this chemo thing, we’ll be experts.

Simple things are appreciated like ice chips and back scratches.

Take it seriously but don’t make it too serious.

Anticipate the next request. After the turn, have the spoon and ice ready before she opens her mouth.

Holding hands is one of those simple things.

Night Shift

For the past two nights, Karen’s schedule hasn’t varied very much. They start with sleep, awakened by a nurse to “check” on her, sleep, awakened by an IV monitor that beeps very loudly, sleep, repeat beeping, nurse, sleep, wake up at 3:00 and stay awake for a while until she a) increases her level of Fenadryl b) gets Zofran or c) both of the above. This is followed by a brief conversation while holding hands. This treatment causes a deep sleep until early morning. Then we start with the nurse, sleep, beep, sleep routine. The drugs do the trick, not the dialogue.

Her strength continues to diminish which we were told to expect. She rests frequently to recuperate from the previous day’s chemo and night routine, and she also dozes in preparation for the next chemo treatment.

This morning she was introduced to her new nurse, Mindy, who does it by the book. She is very detailed and added an instrument that attaches to Karen’s finger and beeps every heartbeat. Darn, more beeping and more wires from Karen’s body. I offered to wear the silly thing for Karen and Mindy wasn’t amused. I bet Mindy’s glad I’m leaving tomorrow.

We started the last day of chemo later than normal - at 2:00. Rats, she'll be so tired when it ends.

Proud

Karen continues to amaze me. Not only is she tackling this week with determination and strength, but she is doing it with grace.

She

- compliments the nurses on their great care,
- says please and thank you for the simple things like ice chips,
- acknowledges her great friends, kind husband, etc.,
- laughs despite being in pain,
- complains infrequently but with gusto “This sucks”,
- is curious at all times about her care,
- isn't afraid to ask for what she needs,
- knows what to watch for and why “temperate : infection”,
- stronger than snot – muscles her way through the 30 minute chemo turns,
- understands the big picture – “I’m very glad I did this”,
- follows orders (i.e., use the breathing tube at 3:00 in the morning to avoid pneumonia)
- show compassion “You need to get some sleep”,
- and lastly, her display of gratitude overwhelms me - “I’m so glad you’re here”

She's incredible.

Love,
Mark

New Room

Karen is out of ICU and in a wonderful room. Her penthouse is equipped with a coach (with rollout bed), DVD player, veranda (ok, small porch), and is at the end of the hall. It is a quiet room and has a lounge nearby. This is where I spend my time upon nurse imposed banishment. They get testy after too many questions and suggestions.

Last night Karen struggled with pain because her dosage was reduced. Once she was asleep she was fine but she was frequently wakened and the pain would start up again. Despite pleas to increase her dosage, she didn’t get relief until she saw Dr. Sugarbaker this morning. Now her Fentanyl dosage has been increased to about the same level as last night (40/30 as opposed to 40/40). The pain continues to be where the chest tubes are inserted.

This morning her nausea was quieted by a dose of Zofran.

She is disciplined to use the inhalation tube on prescribed intervals. Go figure, Karen is following through on her exercise routines. This workout helps to decrease the risk of pneumonia. It occasionally causes coughing which hurts but helps with her diaphragm recovery.

Her liquid diet (IV) has progressed from Potassium Chloride to a white substance which has sugars, vitamins, fats and other yummy stuff.

This morning’s highlight was that she was transitioned to a chair and was sitting comfortably (see note about medicine above). Her voice is stronger, her swelling reduced, and her hair nicely combed. She had a sponge bath which was “wonderful.”

Karen was surprised by a visit from Steve who flew in from California last night. Both Karen and Tom are very pleased by their friends visit. Steve was amazed at how good she looked. I’m pretty sure he was sincere.

Her 3^rd (of 5) day of chemotherapy starts at noon and lasts 6 hours. She’ll be turned every 30 minutes by the trained medical team of Tom and Mark. This process is painful as she has to lay on her side which messes with the chest tubes. We are all looking forward to positive lung x-rays returns and less discharge from the chest cavity (already decreasing). Both signs will permit the removal of the dreaded tubes.

Heading back

Mark

Big Day

I spent last night cramming for the test – studied the PMP web sites to re-familiarize myself with the surgery, potential complications, vocabulary, abdominal organs, and equipment and procedures. You know, just in case I get called up and need to help in the O.R.

Praise God that today went about as well as possible. My assistance wasn't needed.

First words of encouragement were that she would get a full cyto-reduction, next came the news she was getting her first of five chemotherapies today, third was that she wouldn’t have a Ostomy bag, and lastly, when she squeezed my finger tonight I was about as happy as I could be. She nodded her head at my dumb jokes - just to make me smile.

I've appreciated your prayers, thoughts, calls, emails, and words of encouragement. (Ann has passed them on).

Good night.

Mark

Donation Information

Several fund raisers are being planned to help with the cost of Karen's surgery.

Tax deductable checks can be written to : Palm Desert / La Quinta North MOMS Club

The memo line should read : Karen Pendleton Fund Raising

Please send checks to: Sean Roberts, 78590 Bradford Circle, La Quinta, California 92253

FYI: Tax ID Number is 51-0533532