Friday, February 27, 2015

Update #2

Feb. 27, 2015
Today is day 22 of the drainage tube and fat free diet.  We are pretty much over 'baked cod'.

Yesterday the surgeon called from a conference in San Diego (I am SO impressed with him) to check on Rodg.  When I told the surgeon that Rodg was finally down to 30cc of fluid, and Rodg was hoping the same for this morning so he could get the tube out, the surgeon said "no, we will modify his diet"  Rodg is now supposed to eat anything he wants (back to his normal diet) so last night we went and had pizza and beer!

I don't know how long it takes for the body to process fat you eat, so I am a little apprehensive.  Rodg is being cautious about what he is eating because he doesn't want the numbers to spike back up (HE WANTS THE TUBE OUT) but tonight we are going out for fish and chips!   We are to continue monitoring the output, and Rodg has an appointment with the surgeon on Wednesday.  If the numbers stay down, the tube will come out...if the numbers go up, Rodg will be back to a fat free diet for a couple of weeks.

Rodg would really like this all done with as he goes to the NCAA College Wrestling Championships on March 18th (10 yrs in a row).

Sunday, February 8, 2015

Surgery Update

Rodg and I arrived at the hospital at 5:30 and they took Rodg back to Pre-surgery. AT 7:30 I left pre-op to go to the surgical waiting lounge. My sisters, Nancy and Cathy were waiting for me.
Surgery started about 8 a.m.   About 9:00, daughters, Rusti and Kelsi got there. Shorty after that my B-I-L, Mark, got there.   At 10:15 Nurse Katie called and gave an update.  Rodg is doing well and everything is going well.     Noon was the next update with Rodg doing well still.  At 2:00 Dr. McLeod met us in the surgical waiting room to discuss the surgery.  Things went well.  A large section of neck tissue was removed on the left side.  Pathology will dissect the lymph nodes.  A leak to the Thoracic Duct would be a concern, along with nerve damage to his left arm (he is a self-employed silk-screen printer that uses both arms to pull the sqeegee all day) and injury to the voicebox.

The Surgeon said Rodg would be in recovery about two hours, then put in a room.  About 2:30, S-I-L Kristi arrived.  At 4:00 we got the call that Rodg was in his room.  I went up to his room first and seeing him was the  BEST thing!

Rodger is talking well and able to move both arms.  he has swelling on the left side and a LOT of steri-strips.  There is an 8" incision on his neck.

Wednesday - due to fluid retention, the Dr drained 35cc of  fluid from Rodg's neck.  Other than that, Rodg is doing good and having wonderful care.

Thursday - Rodg is still doing well.  Fluid retention is a concern.  The Dr came in and (in brief) said the fluids (from a Chyle leak) shoud self-absorb and if we were comfortable going home, we could. He told us what to look for.  We got home about 3p.m.    At 7pm Rodg called the attending physician and after a chat, decided to stay home.  (I was taking pictures of his neck every two hours to compare) At 9:30 p.m. Rodg said he would feel more comfortable to go get it looked at.  We called ahead and when we got to the hospital at 10:30 we were whisked thru the emergency entrance to a WAITING Dr. who didn't want us to sit through hours in the emergency system !  (How great is that)

Within 15 minutes, Rodg was in a room.  the Drs conferred and said nothing would be done until morning, so Rodg was tucked in and I went home.

Friday~ The Surgeon said he was working Rodg into the schedule and surgery should be about 1:00.  Rodg finally went to surgery about 7pm.    250cc of fluid was drained off and a drainage tube installed.

Sat~ The Surgeon came in with the Pathology report back.  50 lymph nodes were removed, and only 15 of them were 'involved' (meaning cancerous). The Pathology report also states there were no findings in the surrounding skeletal muscles either.  We are hoping that surgery #3 removed the rest of the cancer in Rodg's body, but future bloodtesting, in a couple of months will tell.
After instructions on a Fat-Free diet from the Dietician, and instructions on how to drain is fluid bulb, and a chart to log his output, Rodg was discharged to go home at 4:00.  The Dr. prescribed MCT Oil for Rodg to take with this diet, and after 2.5 hours arguing with the hospital Pharmacy, we finally went home.

We could not have gotten through these 5 days without the love, prayers and support of family and friends.  THANK YOU !!!!

Monday, February 2, 2015

2014 Was A Shit Storm

It has been forever since I have blogged.  Partly because I am lazy, partly because I am a private person, and partly because I was brought up that you don't air your dirty laundry.

Well, it's laundry day in a big way.

IT has been a horrible year....... Jan. 28, 2014, our house was broken into.  We were vandalized.  Not only did the crooks steal physical items (heirloom jewelry, guns, bows, money), they also stole my sense of security.  Even with purchasing a home security system [thanks crooks :( ], I sometimes do not feel safe in my own home.  Our living room sits to the back of the house so when I think I hear something/someone  in the driveway, I run to the window to see.  I always have my loaded handgun (Yes, I have a CCD permit) in the house.  Especially when my husband is not home. 

Then in Feb. 2014 Rodg started having problems.

2-27 -14 Rodg started getting at tingling feeling on his left side: lip, tongue, left cheek, left fingertips and left side of his head.  At 9:30 am. He walked to the ambulance barn and asked them to check him over. They checked blood pressure, pulse, heart rate and asked all sorts of questions.  Everything read as normal, so they suggested he contact his primary physician.  Rodg thinks he is having a reaction to the Lyrica he is taking for the pain from the shingles he got in September.
He mentioned all this to me at 9 p.m.

At 11;30 a.m. I got to the Shop and asked if he had called the Dr yet.  At noon, I called the Dr's office and told Stacey his symptoms.  At 12:10 the Dr. called Rodg and told him to go to emergency because they could not get him in and would just send him to emergency anyway.  Rodg got to Sparrow Hospital about 12:30 p.m.   He was talked to by neurologists, and has had CAT scan, chest xray, and a EKG, blood work, urine sample. They did a brain MRI, CT Angiogram and echocardiogram.  They cannot find anything wrong.......
10 PM - CTA

3-1-14  Did an EKG, an injection of lovinox (a blood thinner

3-3  Dr. Larkin's office for a follow-up

3-6  Dr. Safdar, MSU Neurology - Cannot find anything wrong with him.  Ordering a spinal tap to see if maybe the shingles got in his brain.

3-14 MSU Radiology dept for spinal tap.
3-16 Rodg got light-headed, nauseous, called Dr.
3-17 Rodg went to Sparrow for a blood plug to seal the hole from the spinal tap.
3-28 Dr Safdar is sending Rodg to Beals Institute to see if the tingling is anything to do with the autoimmune system.   grasping at straws......

4-4 Beals Institute. Asked 100 questions and drew 11 vials of blood.  Come back in three weeks.

4-8 Dr. Larkin's for blood work....cholesterol is high, B12 is low, d3 is low.  Lipitor, B12 supplement, 50,000 mg of D3 once a week for 12 weeks. Saw something from the CT angiogram in Feb. sending for a thyroid test.

4-25 Beals Institute - all tests are negative.

4-30 and 5-1. Thyroid testing at Sparrow. Dr called.  Sending for an ultrasound.
5-2 had to get an ultrasound of thyroid....nodules on the left side.

5-6. Dr. Hanses (General surgeon) - consultation for nodules.  Rodg opted for a needle biopsy.
5-20 needle biopsy at Sparrow
5-30 follow up with Dr. Hanses, biopsy shows A-typical cells.  

July 1, met with Dr. Carella, Endocrinologist for a second opinion.  The DVD from Sparrow was not good quality, so he will consult with a pathologist he works with.
Dr. Carella will schedule a consult with Dr. McLeod, Endocrinology surgeon, to contact us for a surgical consult.

July 14 -met with Dr. McLeod.  Surgery for a left thyroid lobectomy and isthmusectomy with recurrent laryngeal nerve monitoring is scheduled for Sept. 30th.

Sept. 22 - pre-op history and physical.
Sept. 24 - EKG, chest X-ray and blood work.  Phone interview with nurse.

Sept. 30th Surgery #1~ took 2.5 hours.   (outpatient)   Will go for a followup on Oct. 13th.

Oct. 13th - met with Dr. McLeod.  Results of the thyroid removal proved medullary thyroid carcinoma.  
     SIDENOTE: Of the four types of Thyroid cancer, only 4% of the people get this rare type.....
The right thyroid will need to be surgically removed, along with some lymph nodes. Rodg needs to have an ultrasound of the neck area, and have the adreenal glands checked to see how many lymph nodes need to be removed.  Surgery is scheduled for Dec. 23rd for a complete thyroidectomy with central neck lymph node dissection. Calcitonin, 905 (a normal range is 40)

Oct. 16th, Rodg had ultrasound and blood work done.  Total metanephrines 633

Oct. 20th. Rodg's surgery has been moved up to Oct. 31st.

Oct. 21st. Met with Dr. Carella (Endocronologist) today.  He said the type of MTC Rodg has is a "rare" type.   Starting Rodg on thyroid replacement today.  Will need to be on a calcium supplement (with citrate) after surgery.  Did blood work today to see if the cancer is genetic.  If genetic, girls will need to be tested right away and if they have the gene, will need their thyroid removed ASAP.

Oct. 22 - needle biopsy at MSU Women's Imaging Center, Suite 600, Eyde Bldg.  Rodg got four shots to numb it,and took about 12 samples.

Oct. 23 ~ I called Dr. Carella's office today and talked to Marilyn to see when we might get the results back from Tuesdays bloodwork. Vitamin D is low and the parathyroid levels are elevated.  She will check with the Dr.   I asked what was so 'rare' about this type of cancer and she could not explain it, but she said with all the reports she has seen over the years, it is very few like this......

Oct. 31 – Surgeryb #2 ~ Arrived at Sparrow at 6:15 am. Rodg was taken to surgery at 9:15.  11:15 Nurse Michelle called to tell me things were going good and they had removed one sample, getting ready to do another.  If Dr was not done by 1:15, she would call me back.  Met with the Dr at 1:20. Dr. McLeod did a central neck dissection,  went to review things. had to clean out neck, he has involvement (it has spread). got things pretty cleaned out, R thyroid looked benign. took big block of nodes out, won’t know if it has spread past the nodes until Dr. Carella does bloodwork and imaging.
involvement - how many nodes, gross involvement means spread to the regional lymph nodes.  
He worries about his his voice - might sound difference. Also concerned about calcium. parathyroid glands get buried in lymph nodes -Rodg has one healthy parathyroid on R side.  The one on the left was damaged. He was very aggressive cleaning out his neck. 
Will take levothyroid, Vit D and calcium supplements. May have numbness in fingers, neck, face due to low calcium.  If gets too low, it’s like an engine seizes.  Needs to follow up immediately, may need a calcium injection. 
Dr. Carella will do images & studies in December.  Medullary Thyroid Carcinoma can metastises to the liver, lungs, bones.  Not a cancer that kills quickly.
No chemo or radiation, radioactive iodine as this type of cancer does not respond to those

Nov. 7 ~ Met with Dr. Carella (Endocrinnologist) ~ all 11 lymph nodes removed tested positive for cancer.  Will need an extensive neck surgery to remove the rest of the lymph nodes.  Right thyroid was benign.

Nov. 10 ~ Met with Dr. McLeod ~(Surgeon)  We will need to wait for three months (for tissue to calm down) then do another ultrasound and biopsy to plan the next step. This cancer has been there for a long time, so waiting for the tissue to calm down is not a concern of the surgeon.  Did more blood work today. Calcitonin, 169.  CEA 15.3H

Nov. 17th - had a telephone interview with Best Doctors.  They are gathering paperwork. Best Doctors is a free service from MSU. A team of doctors from around the US looks at all reports to see if we shoud be doing anything more/different.  They concurred with the treatment path we are one. 

Nov. 21 - Breslin Cancer Center at Ingham Med.  Met with head of department. Dr. Al-Janadi and Fellow Dr. Kurniali.  517-975-9500      
Rodg's records will be presented to a tumor board for review to see if there any additional actions to take. IE: radiate the neck area.  

December 11th Rodg had a CT scan done for Dr. Al-Janadi (Oncologist).

December 29, 2014  Met with Dr. McLeod (surgeon) to discuss if we want to change our course of action and go to U of M? (the Onoclogist did not know IF U of M would do other tests) Rodg decided he will follow Dr. McLeod.  Dr told us all the risks of the next surgery (scheduled for March 31st) Ronda will see if the surgery can be moved up.  


Jan. 2, 2015  Went to court today as crook #1 got sentenced.  76-276 months.

Jan. 7, 2015  Ronda called and said surgery has been moved up to February 3rd. J

Jan. 9th ~ Rodg met with Dr. Carella to have levels checked. Thyroid meds have been lowered to 112mg.  Calcitonin down to 152 from 905.  

Jan. 14th  8:00 Ultrasound,  9:15 PET scan.

Jan. 19th  3:00 Chest x-ray;  
3:30 health history with PA;
4:00 appt with Dr. McLeod for PET results and surgical procedures. Rusti and Kelsi  attended to hear for themselves and ask their own questions.
 *PET scan showed no cancer....Bad because we know some is in there, good because he didn't light up like a Christmas tree.

Jan. 26-30 Bloodwork, CBC, 24-hr Urinalysis

Jan. 30 - Went to court for sentencing of crook #2.   Because it was his first offence, he only got 90 days in county jail.  The worst part about this is the crook went to school with my girls, and lived next door while in JR/sr high school.  Doesn't that make you feel safe when he only gets 90 days.

Feb.  1st ~ woke up to the house being 64 degrees.  Rodg got the furnace started (motor seized up) and it ran all day.   Got a snowstorm today, at least 7.5" as of 9 p.m.

Feb. 2 ~ again, woke up at 5:15 to the house being 65 degrees.  I have had to try to start the furnace every 1.5 hours with sticking a screwdriver in to push on the fan blades to get them to start spinning. 

Rodg's truck scrapped bottom when he went out the driveway this morning.  I have the walks shoveled (again).  We got a total of 9” (more where it drifted)

Rodg just came home from work to plow the driveway and the plow won’t start.   

Time to go spin the furnace blade again.....

AND SO, here we are, the day before surgery #3.  This surgery will be very involved.  There is so much that goes on in the neck area, taking things to and from the body to the brain.  I can't lie and say I am not concerned, because I am.  I am trying to keep a positive attitude and keep my emotions in check.  We do have the Patient Advocate paperwork filled out....that stirred many emotions.

Time to spin the furnace blade again…house is 64 degrees……

I am pushing all negative thoughts from my mind....pushing....pushing...... Everything  will be fine !!!