Today ended up being the worst day of all.
Are you all sick of me yet?
I sure am.
I can't even look at myself anymore. A good friend that has been thru something similar told me to get up every day and put on lipstick. Do my hair.
I really don't care anymore.
Weekends are ok but week days are the worst.
Doctor appointments. Tests. Scan. Needles. Yada Yada
The mask we went to have fitted on Friday is done!
Whoop-de-Freakin-Ding Dong.
My husband has played football and basketball with pain so great it would bring a lesser man down. Not him. They'd throw some novocaine into a pulled hamstring or torn ligament in his knee and back into the game he'd go. Three broken noses his Senior Year in college ball. No big deal.
Claustrophobia is another matter all together. That mask freaks him out! The mask is fitted very tightly to your face then clamped down to the table while your arms are in chains to pull your shoulders away from your neck. Seriously, it looks like a Medieval Torture Chamber.
Today: 8:45 a.m. Home.
I give my husband who has never taken a drug in his life 2 mg of Xanax to relieve his anxiety of the mask.
9:15 a.m. The 4th CaT Scan is scheduled with the dreaded mask to calibrate exactly where the radiation beams will go on the neck. Thy say they will salvage what they can. One salivary gland and maybe a slim chance to salvage the taste buds and voice box and his bottom teeth. His throat will be blasted by radioactive beams 5 days a week for 15 minutes a day for 8 weeks.
9:30 a.m. An IV put into place. Time to put on the mask and get the CT Scan. He panics and refuses.
My heart drops. No mask= No treatment. He will have to wear this mask everyday of the week. 5 days a week for 8 weeks. The Xanax is useless. I coax and plead and cry and beg and bargain with him. He has dug in his heels and says No! OMG.
12:00 p.m. I am exhausted. Myself and three nurses have worn ourselves out but we finally, 2.5 hours later convince him to get the scan with the mask. Thank You Jesus! (How kind and amazing there are to take so much time and energy to CARE)
Claustrophobia sounds lame but it can be so debilitating.
3:00 p.m. First consult with the Chemotherapy Oncologist.
The Pathologist Report.
This damn report has dogged me all weekend and I almost want to burn it right there in the padded ugly purple chair and run like the wind while the ugly chair and the report ignite and are never seen again by mankind or the decorator that chose that ugly ass purple chair.
Chemo will begin after the G-Tube and Chest Port for Chemo are surgically installed. One will Feed and the other will fill my husband's veins with deadly chemicals to kill cells in it's path.
The report again. God, I don't even want to write to you what that ugly thing says.
The secretary of our family doctor was right.
(From this date forward, her name will not ever be mentioned in my house or while I breathe air. She seemed to enjoy telling me that news.) I want to poke her eyes out with a spoon.
The Report........................................
My wonderful kind and gentle husband has not ONE but TWO kinds of cancer.
Yes, ladies and gentlemen, he pulled the very short straw.
We went to tell his 95 year old Mom the bad bad news on Sunday. She at first thought he meant that SHE has cancer (Remember, she does. She has a mass on her lungs but we never told her. Her affairs are in order. At 95 what does it matter really?) It seems that every male in his family has died of cancer. HOW did we not know this before????
He has Stage 4 Squamous Cell Carcinoma of the Throat AND a very rare form of very aggressive Large Cell Neuroendrocrine Cancer. Survival rate is slim.
Now we know and now we fight but for what?
75% chance it will return after treatment.
My fight is dimming. His fight is all but gone. I don't even pretend not to cry anymore. I am so raw and scared and quite frankly I worry that he will suffer and then after 4 months of radiation and the chemo he will be seared and burned and poisoned and THEN he will die. I feel hollow. He talks about when he's dead and gone now. Instructing me on what to do when he is...
I once knew a woman in real life that hated my YouTube Channel so much. She told me I had weird and bizarre people that watched my videos and that it was all very revolting to her. She would post about me on gossip sites and called my own brother to get him to make me stop posting videos. She thought all of my viewers were freaks.
Not So. Not even close. I feel sorry for her closed up mind.
I have found that since being on YouTube, some of the most genuine, thoughtful, caring and most of all loving and giving men and women in the world has ever known!
Today, I have cried tears all day long.
Tonight I cry while typing this to all of YOU. You are so strong and steady and I have been sucking the very souls from all of you and your amazing strength and love you have shown to my husband and to me... perfect strangers. I have never been as blessed as I am right now, in a time of sorrow and fear as I am by each and every one of you.
Let me copy a Tweet for you...
savingsmallbiz
@LanaIndianax Here's today's
hug {{HUG}} The first beautiful flower you see on
your path today is from me ;)
That is just ONE example out of the thousands I have received since this began less than 3 weeks ago. Every day I get notes and comments and letters and messages and warm hugs and LOVE from you. You are all angels here on Earth and I love you more than you know. Thank You.
P. S. I saw her flower today as we walked out of the Oncology building. It had the most beautiful bee buzzing around it. Loving it.
I stood there on the green grass of the perfectly manicured lawn and hugged my husband and cried. See, I never ever took much time in a day to stop and LOOK and see the pretty flowers and what God has given me. Given Us. Maybe God needs a warm and gentle, sweet and caring man in Heaven.
Maybe he will let me keep him.
I need him and I need all of you too. xo
Monday, June 27, 2011
Sunday, June 26, 2011
Getting My Big Girl Panties Ready for Tuesday
It's Sunday.
Yesterday and today we seem to have a bit of respite. No tests or reports.
No appointments. These two days we are calling "Our Positive Days."
Saturday. Sunday.
No thinking talking or looking at negative allowed, only positive.
If we squint our eyes really tight, I mean REAL REAL tight, these two days we can almost forget this mess. Ha! Who am I kidding? I tried it and it isn't working.
On Friday around 4:00 our family doctor and friend's office secretary called.
The Biopsy Pathology report was in..... Breathe.
What will it say?
My husband left his cell phone with me in case she calls and told me to have the results sent to
1. Our Dr. at IU Med Center
2. A Dr. we were told is the BEST at MD Anderson, Huston
3. Here. Home.
He left to go sign papers at his office (which he has neglected.)
His cell phone rings. It's the Path report. I tell the secretary who and where to fax it and she begins by telling me...
"It's Bad, Lana. Really really BAD!" I am floored.
"How Bad?" I ask.
"What about it makes it bad? Tell me. I have to know. I have to be ready before he gets home!"
She just keeps repeating those words...
"It's Bad! It's not good. It's Bad. It's Bad."
By now I am like an animal. Feral and screaming. Sobbing. Begging.
I HAVE TO KNOW!
The faxes are coming in. Page after page after page. I can't read it thru the tears and begging her for information. Medical information that I am clueless about. I have the papers but feel like a 2 year and can not READ it. What does it mean? What does it say?
She repeats over and over that it's Bad finally telling me it's against the law to tell me any information over the phone!
By now I am hysterical. About to literally climb up a wall.
"Tell me now! What does it say and what makes it so much more BAD than what we already KNOW! PLEASE!"
She hangs up saying "I can't tell you."
I go into complete and utter despair. I finally gather myself enough to call my daughter in law who is an RN and she flies here leaving my 3 grandkids and my son with a rushed message "Watch the kids. I'm outta here."
We pore over these reports watching the clock like Russian Spy Double Agents going over secret documents at the Pentagon . We can't have this report in our hands and my husband walk in the door!
It would be horrible for him to see us in such a state. I text his office to tell them:
Keep Him THERE!
This is a Pathologists reports with stains and graphs and medical lingo we don't understand. I call my brother who is an anesthesiologist but is in Singapore.
27 pages of info and we only make out a few words that jump off the pages. The fear leaves us both ice cold.
Three words jump off the pages:
Metastatic
Lung
Endocrine Carcinoma
My daughter in law and I are clutched in absolute fear. She asked me if I want her to be there when my husband does get home to tell him what the report has circled and underlined? (Medical words and phrases that may as well be written in Chinese.)
God No!
To have my sweet DIL be the one to tell him anything bad would be horrific and unfair to her. What do we do?
Do I tell him? Do I hold this secret all weekend until we see the Biopsy Surgeon on TUESDAY???? Oh my God! I will never make it to Tuesday.
My DIL leaves.
2 minutes later, my dear husband comes home and dilemma I'm in is answered the second he sees me. "You look like you just got ran over. What's wrong. What does it say"?
We read it together but thankfully, he can't make sense of it either so we wait.....
Tuesday.
Yesterday and today we seem to have a bit of respite. No tests or reports.
No appointments. These two days we are calling "Our Positive Days."
Saturday. Sunday.
No thinking talking or looking at negative allowed, only positive.
If we squint our eyes really tight, I mean REAL REAL tight, these two days we can almost forget this mess. Ha! Who am I kidding? I tried it and it isn't working.
On Friday around 4:00 our family doctor and friend's office secretary called.
The Biopsy Pathology report was in..... Breathe.
What will it say?
My husband left his cell phone with me in case she calls and told me to have the results sent to
1. Our Dr. at IU Med Center
2. A Dr. we were told is the BEST at MD Anderson, Huston
3. Here. Home.
He left to go sign papers at his office (which he has neglected.)
His cell phone rings. It's the Path report. I tell the secretary who and where to fax it and she begins by telling me...
"It's Bad, Lana. Really really BAD!" I am floored.
"How Bad?" I ask.
"What about it makes it bad? Tell me. I have to know. I have to be ready before he gets home!"
She just keeps repeating those words...
"It's Bad! It's not good. It's Bad. It's Bad."
By now I am like an animal. Feral and screaming. Sobbing. Begging.
I HAVE TO KNOW!
The faxes are coming in. Page after page after page. I can't read it thru the tears and begging her for information. Medical information that I am clueless about. I have the papers but feel like a 2 year and can not READ it. What does it mean? What does it say?
She repeats over and over that it's Bad finally telling me it's against the law to tell me any information over the phone!
By now I am hysterical. About to literally climb up a wall.
"Tell me now! What does it say and what makes it so much more BAD than what we already KNOW! PLEASE!"
She hangs up saying "I can't tell you."
I go into complete and utter despair. I finally gather myself enough to call my daughter in law who is an RN and she flies here leaving my 3 grandkids and my son with a rushed message "Watch the kids. I'm outta here."
We pore over these reports watching the clock like Russian Spy Double Agents going over secret documents at the Pentagon . We can't have this report in our hands and my husband walk in the door!
It would be horrible for him to see us in such a state. I text his office to tell them:
Keep Him THERE!
This is a Pathologists reports with stains and graphs and medical lingo we don't understand. I call my brother who is an anesthesiologist but is in Singapore.
27 pages of info and we only make out a few words that jump off the pages. The fear leaves us both ice cold.
Three words jump off the pages:
Metastatic
Lung
Endocrine Carcinoma
My daughter in law and I are clutched in absolute fear. She asked me if I want her to be there when my husband does get home to tell him what the report has circled and underlined? (Medical words and phrases that may as well be written in Chinese.)
God No!
To have my sweet DIL be the one to tell him anything bad would be horrific and unfair to her. What do we do?
Do I tell him? Do I hold this secret all weekend until we see the Biopsy Surgeon on TUESDAY???? Oh my God! I will never make it to Tuesday.
My DIL leaves.
2 minutes later, my dear husband comes home and dilemma I'm in is answered the second he sees me. "You look like you just got ran over. What's wrong. What does it say"?
We read it together but thankfully, he can't make sense of it either so we wait.....
Tuesday.
Friday, June 24, 2011
The Word For Today: Bleak
Today is Friday.
I used to love Fridays. Fridays were days my husband and I would end our busy hectic week and have a "Date."
Date Night.
Fun dates for old farts?
We would get dressed up in our best.
Pretty dresses with sparkles and sequins.
High heeled stilettos.
My husband always in a suit. Two people in love doing a simple thing. Enjoying a lovely dinner together and connecting. Romance.
We found a quiet romantic French restaurant about 45 minute drive from our house or if we were both away, we would make the extra effort to save Friday for each other. Our favorite French waiter. Our very own special booth. Dark and cozy. Candlelight.
A romantic dinner. No discussing troubles of the week~ only absorbed in each other. It was like glue. It brought us back to us and our marriage and kept it exciting.
French Bread smothered in rich creamy butter. Baked Alaskan Salmon with a Lemon Mousseline Cream Sauce. Couscous. Grilled Asparagus. Shrimp Cocktail. Creme Brule.
(Date Night is highly recommended even to those just dating or those married for years.) It doesn't have to be a fancy restaurant just time spent together.)
Today is an average Friday except....
Now my husbands throat hurts like mad. The surgeon called me yesterday to check on him and told me he had to cut and used forceps during the biopsy to remove the equivalent of a shot glass full of cancerous tissue to allow him to breath until treatments start.
De-bulked.
Pudding, scrambled soft eggs and milk shakes. Nothing romantic about that menu.
Today. Friday. Right now. I am sitting in an Oncology Waiting Room while my beautiful husband is in a room away getting fitted for a Mask.
Wait! What? A mask?
After the Oncology Doctor told us untold horrors of what this radiation will do, he is set up with a mesh formfitting mask to mark where the beams will go and more importantly hold his head and neck still when they clamp it to the table so the beams only go to the affected neck tumors.
Naturally, this lousy support system, ME, broke down and I had to race out of the room to sob into a very ugly painted hospital wall wailing and once again be a complete basket case. I would never want me on my side in a crisis like this! Strong? Ha! I'm pathetic.
Some of the symptoms of radiation to your neck and throat:
Severe sore throat.
Loss of hair
Loss of taste
Loss of saliva
Loss of teeth
Get a feeding PEG tube placed next week in the stomach to "eat" six to eight cans of Boost or Ensure a day.
Loss of feeling in your mouth, tongue and throat.
No shaving. (I used to love to watch my husband shave. It is such a manly ritual.)
No After-Shave. (I love to see and smell his face with Old Spice or whatever the cologne of the day is. Real men smell good)
No lotions, sprays or any other products anywhere near the head or neck to avoid extreme skin reactions.
All of this five days a week for 7 to 8 weeks. Treatment to begin in a week or so after a trip to MD Anderson in Huston for a second opinion.
I don't paint a pretty picture, huh? The word for today is Bleak.
Well, this is just Radiation Oncology.... Monday is Chemotherapy Oncology.
That's where the bad really begins...
I need to get my Big Girl Panties on and be ready for Monday. Chemo is no joke either.
Watching someone you love and to see and know how bleak the future looks in regards to THEIR pain and suffering, is as difficult as it gets. My very heart is breaking.
If I could in ANY way take this cancer and it's difficult treatment and do all of this for him, I would jump at the chance.
Where ARE my Big Girl Panties anyway????
I used to love Fridays. Fridays were days my husband and I would end our busy hectic week and have a "Date."
Date Night.
Fun dates for old farts?
We would get dressed up in our best.
Pretty dresses with sparkles and sequins.
High heeled stilettos.
My husband always in a suit. Two people in love doing a simple thing. Enjoying a lovely dinner together and connecting. Romance.
We found a quiet romantic French restaurant about 45 minute drive from our house or if we were both away, we would make the extra effort to save Friday for each other. Our favorite French waiter. Our very own special booth. Dark and cozy. Candlelight.
A romantic dinner. No discussing troubles of the week~ only absorbed in each other. It was like glue. It brought us back to us and our marriage and kept it exciting.
French Bread smothered in rich creamy butter. Baked Alaskan Salmon with a Lemon Mousseline Cream Sauce. Couscous. Grilled Asparagus. Shrimp Cocktail. Creme Brule.
(Date Night is highly recommended even to those just dating or those married for years.) It doesn't have to be a fancy restaurant just time spent together.)
Today is an average Friday except....
Now my husbands throat hurts like mad. The surgeon called me yesterday to check on him and told me he had to cut and used forceps during the biopsy to remove the equivalent of a shot glass full of cancerous tissue to allow him to breath until treatments start.
De-bulked.
Pudding, scrambled soft eggs and milk shakes. Nothing romantic about that menu.
Today. Friday. Right now. I am sitting in an Oncology Waiting Room while my beautiful husband is in a room away getting fitted for a Mask.
Wait! What? A mask?
After the Oncology Doctor told us untold horrors of what this radiation will do, he is set up with a mesh formfitting mask to mark where the beams will go and more importantly hold his head and neck still when they clamp it to the table so the beams only go to the affected neck tumors.
Naturally, this lousy support system, ME, broke down and I had to race out of the room to sob into a very ugly painted hospital wall wailing and once again be a complete basket case. I would never want me on my side in a crisis like this! Strong? Ha! I'm pathetic.
Some of the symptoms of radiation to your neck and throat:
Severe sore throat.
Loss of hair
Loss of taste
Loss of saliva
Loss of teeth
Get a feeding PEG tube placed next week in the stomach to "eat" six to eight cans of Boost or Ensure a day.
Loss of feeling in your mouth, tongue and throat.
No shaving. (I used to love to watch my husband shave. It is such a manly ritual.)
No After-Shave. (I love to see and smell his face with Old Spice or whatever the cologne of the day is. Real men smell good)
No lotions, sprays or any other products anywhere near the head or neck to avoid extreme skin reactions.
All of this five days a week for 7 to 8 weeks. Treatment to begin in a week or so after a trip to MD Anderson in Huston for a second opinion.
I don't paint a pretty picture, huh? The word for today is Bleak.
Well, this is just Radiation Oncology.... Monday is Chemotherapy Oncology.
That's where the bad really begins...
I need to get my Big Girl Panties on and be ready for Monday. Chemo is no joke either.
Watching someone you love and to see and know how bleak the future looks in regards to THEIR pain and suffering, is as difficult as it gets. My very heart is breaking.
If I could in ANY way take this cancer and it's difficult treatment and do all of this for him, I would jump at the chance.
Where ARE my Big Girl Panties anyway????
Wednesday, June 22, 2011
One Bloody Bad Day
Today was misery.
We woke up at 3:30 to be at the hospital at 6:00 a.m.
Answer questions for charts and more records. Allergies, meds etc. Red Tape.
The RN who was so sweet began an IV but blew a vein straight away. 2nd try. She infiltrated the vein this time. I saw the Lactating Ringer solution well up into a huge bolus under the skin on his arm. All the fluids settled there. Call in a back-up 2nd RN since they have a 2 Stick Rule and this one got it. Whew.
Next, the surgeon and the anesthesiologist came in. One detail was discussed that if the tumor was too big for my husband to be intubated (The Dr. breathes for you thru a tube inserted in your airway) so that he would have to have a tracheotomy) A tracheostomy is a hole cut into your throat to be used for an airway, food, water and to talk. That also involves a week-long stay in the hospital and the trach would have to stay in place thru radiation and chemo treatments so that is over 2 months with a hole in your throat. All while getting the crap sizzled out of your neck with radioactive beams. Not Fun.
They take him to surgery at 7:30.
At 9:00 the RN comes to tell me that the surgeon still hasn't performed the surgery biopsy. The tumor is
6 inches across and pressing hard against the windpipe. 3 more weeks and it would have suffocated him. No air and you die.
You can live
3 weeks with no food
3 Days with no water
3 minutes with no air.
These two wonderful Doctors worked for well over an hour but they got that tube down his airway so NO TRACHEOSTOMY!!! Good News and I truly do think all of YOUR prayers helped with that one. Hey, I'll take one miracle at a time.
2 more hours... Both doctors come to find me in the surgery waiting room.
The tumors are growing at lightening speed. Radiation and chemo are imperative now or as in two months ago! His neck has many other tumors, some small and some large. One is 6 times the size the surgeon has ever seen.
They tell me he will have a very rough road ahead. You only get ONE shot at radiation in your lifetime, at least in your neck. Too much and it can kill YOU and not the cancer.
We won't even think about if the Radiation doesn't work....
Two nurses come to get me. He is in recovery but family is not allowed back there. My husband is very agitated and asking for his wife so they let me back there into those secret halls where family never enters.
OMG. When I see my wonderful football/basketball player husband lying there so vulnerable, I just about melt. I want to crawl into the next bed over and cover my head and his too.
His throat is a bloody mess where they took a biopsy from one of the tumors.
They "de-bulked" the largest one so he can breath. (I assume de-bulked means to cut part of it off.) Ouch.
His mouth. His mouth is so full of blood and pieces of tissue. His skin is ice cold as I put my lips on his face. I can see his pain but former athletes never whine. I do! His pain scale was a 10.
I told him he had to get the morphine offered and he finally does. I convince him that it's not being wimpy to take pain meds.
Oh, the rest of the day was more scans and pokes, prods, meds and procedures. So many wonderful nurses and doctors to help us. My husband has never been sick! No surgeries or broken bones, no ailments or treatments since he had his tonsils removed at 6 years old.
What causes this type of aggressive ugly cancer?
Smoking. My husband never smoked a day in his life.
Drinking. My husband has a few beers with the boys once a week, if that.
More men get this type than women.
I do know that I have never felt so helpless and incapable in all my life. We are like two children here and I am more lost than he is! I can evacuate a burning aircraft of 215 passengers in less than 90 seconds but I am a complete dolt when it comes to any of this.
I cried for 20 minutes when I couldn't find the thermometer but finally did when I found it clutched in my own hand. I didn't know I had it.
I need to learn to slow down and be calm. No longer one day at a time but one minute at a time.
He's home now and resting. He describes his throat as a Lawn Mower that had a party in his mouth.
Thank You all for everything from your advice and instructions to Prayers and support but mostly for being here for me. Being here for us both. You are all amazing!
I had my iPad in my bag with me in the Recovery room and the Tweet beeps and incoming email beeps were going off like fireworks. It gave us both so much comfort. You were right there with us!
My husband said that with each beep you let him know that he's still alive.
Right now, I want to go eat a medical dictionary.
WHY didn't I pay more attention to my First Aid courses? Why?
We woke up at 3:30 to be at the hospital at 6:00 a.m.
Answer questions for charts and more records. Allergies, meds etc. Red Tape.
The RN who was so sweet began an IV but blew a vein straight away. 2nd try. She infiltrated the vein this time. I saw the Lactating Ringer solution well up into a huge bolus under the skin on his arm. All the fluids settled there. Call in a back-up 2nd RN since they have a 2 Stick Rule and this one got it. Whew.
Next, the surgeon and the anesthesiologist came in. One detail was discussed that if the tumor was too big for my husband to be intubated (The Dr. breathes for you thru a tube inserted in your airway) so that he would have to have a tracheotomy) A tracheostomy is a hole cut into your throat to be used for an airway, food, water and to talk. That also involves a week-long stay in the hospital and the trach would have to stay in place thru radiation and chemo treatments so that is over 2 months with a hole in your throat. All while getting the crap sizzled out of your neck with radioactive beams. Not Fun.
They take him to surgery at 7:30.
At 9:00 the RN comes to tell me that the surgeon still hasn't performed the surgery biopsy. The tumor is
6 inches across and pressing hard against the windpipe. 3 more weeks and it would have suffocated him. No air and you die.
You can live
3 weeks with no food
3 Days with no water
3 minutes with no air.
These two wonderful Doctors worked for well over an hour but they got that tube down his airway so NO TRACHEOSTOMY!!! Good News and I truly do think all of YOUR prayers helped with that one. Hey, I'll take one miracle at a time.
2 more hours... Both doctors come to find me in the surgery waiting room.
The tumors are growing at lightening speed. Radiation and chemo are imperative now or as in two months ago! His neck has many other tumors, some small and some large. One is 6 times the size the surgeon has ever seen.
They tell me he will have a very rough road ahead. You only get ONE shot at radiation in your lifetime, at least in your neck. Too much and it can kill YOU and not the cancer.
We won't even think about if the Radiation doesn't work....
Two nurses come to get me. He is in recovery but family is not allowed back there. My husband is very agitated and asking for his wife so they let me back there into those secret halls where family never enters.
OMG. When I see my wonderful football/basketball player husband lying there so vulnerable, I just about melt. I want to crawl into the next bed over and cover my head and his too.
His throat is a bloody mess where they took a biopsy from one of the tumors.
They "de-bulked" the largest one so he can breath. (I assume de-bulked means to cut part of it off.) Ouch.
His mouth. His mouth is so full of blood and pieces of tissue. His skin is ice cold as I put my lips on his face. I can see his pain but former athletes never whine. I do! His pain scale was a 10.
I told him he had to get the morphine offered and he finally does. I convince him that it's not being wimpy to take pain meds.
Oh, the rest of the day was more scans and pokes, prods, meds and procedures. So many wonderful nurses and doctors to help us. My husband has never been sick! No surgeries or broken bones, no ailments or treatments since he had his tonsils removed at 6 years old.
What causes this type of aggressive ugly cancer?
Smoking. My husband never smoked a day in his life.
Drinking. My husband has a few beers with the boys once a week, if that.
More men get this type than women.
I do know that I have never felt so helpless and incapable in all my life. We are like two children here and I am more lost than he is! I can evacuate a burning aircraft of 215 passengers in less than 90 seconds but I am a complete dolt when it comes to any of this.
I cried for 20 minutes when I couldn't find the thermometer but finally did when I found it clutched in my own hand. I didn't know I had it.
I need to learn to slow down and be calm. No longer one day at a time but one minute at a time.
He's home now and resting. He describes his throat as a Lawn Mower that had a party in his mouth.
Thank You all for everything from your advice and instructions to Prayers and support but mostly for being here for me. Being here for us both. You are all amazing!
I had my iPad in my bag with me in the Recovery room and the Tweet beeps and incoming email beeps were going off like fireworks. It gave us both so much comfort. You were right there with us!
My husband said that with each beep you let him know that he's still alive.
Right now, I want to go eat a medical dictionary.
WHY didn't I pay more attention to my First Aid courses? Why?
Tuesday, June 21, 2011
Blue-Capped Vial of Blood :(
I apologize for not posting yesterday. Yesterday was brutal. I took a day off.
I wish Cancer would.
I can't stand that word. It makes me want to rage and pull my hair out and go kick someone right where it hurts. You see, we all go on living our lives in such a bubble of innocence. Sure, I have friends and heard stories of cancer and illness. Who hasn't? But when it comes to visit YOUR house like some unwanted filthy houseguest to wreak havoc and steal your life, then you're changed forever.
Yesterday our office trip to Inner Vision for the PET Scan began at 7:45 am.
Blood work, EKG, Chest xRay, another CT Scan ended at 3:00. 4:00 was the consult with the surgeon for the biopsy on Wed morning surgery.
It's funny, the nurses give YOU the blood to take to the lab be analyzed. They also give YOU a CD that holds your life on a disk. All of your scans, reports and results are on this disk. I wanted to take it home put it in my MacBook and hit "Reject."
Be gone you cancer bastard!
They gave me his 4 vials of blood to take to the lab. I had it sitting right next to me in the passenger seat of my car like a VIP passenger. One 1st class ticket to the lab.
I get it there safely and the tech tells me I didn't have the "Blue-Capped" vial of Blood.
What the hell does that mean?
I have this blood in a sealed bag with red and yellow stickers all over it. I stood there like some confused passenger that ended up in Shanghai when they were supposed to have landed on a beach in Monaco.
I think my mouth was even gapped open in confusion as I stood there at the lab window.
The rude tech said "You didn't bring the Blue Capped Vial of Blood. Go get it! You have to go get it! I need more blood here, lady!"
I felt as tho I had failed everyone. I had one task to do and I couldn't even do that right.
I stood there in the middle of the Medical Arts building in my wrinkled up linen suit and cried.
I completely lost it.
I don't mean tears running down my face, I mean full-blown sobbing and wailing. It wasn't pretty. I can usually hold it together but I even failed at that.
I completely lost it. It took restraint to keep from throwing myself on the marble floors and curl up in a fetal position and cry...
I did finally pull it together, went back to Inner Vision, got the nurse to enter the suite that my husband was getting his juice for the PET Scan, draw more blood and took it back to the lab.
I truly wanted to pull a scene like from the movie "Carrie" and envision all that blood on that rude lab tech dripping down her head and say "Here! Here's your Blue Capped Vial of Radioactive Blood!"
These days I look at my husband and cry.
I thought I was this strong strong woman. Boy, was I wrong. I have been thru some unspeakable things in my life. My childhood could be a really bad Made for TV Movie and I thought it made me like work-horse strong. I thought so many things about myself that I am finding to be horribly wrong.
The thought of what lies ahead for him makes me shudder.
If his prognosis is simply Stage 4 Squamous Carcinoma of the Throat, he is in for some really rough months ahead. If it is worse than that... I can't even imagine it.
Each and every note from all of you has gotten us thru and my husband and I appreciate them and your wonderful offers of Hope and Support more than you could ever know.
I have been given hundreds of perfect stranger's home phone numbers to call and
Offers....
I have had offers from people to come live with them during this.
I have had offers to come here to cook and clean for us.
Offers to do our laundry.
One sweet and wonderful friend has offered to let me call her at 4 a.m. or any time just to weep and she will listen in support.
I have had offers to drive us around to appointments.
I have had offers to take our two dogs until this nightmare is over.
I have had offers to call Doctors in Huston and pull strings for quick entry into the medical system there.
So many offers.
Most importantly, I have had thousands of offers to PRAY.
Prayers from perfect strangers. What amazing people all of you are. I am so Blessed.
Truly Blessed.
Tomorrow is the biopsy surgery. If all goes well, we will have answers and options.
If not, I don't know. The surgeon will put a probe with a camera down his throat. He will look inside his throat lungs, esophagus, stomach etc. They will hopefully get a tube past the cancer in his throat to breath for him during surgery. If the cancer has blocked that tiny hole then they will have to do a tracheotomy which is cut a hole in his throat to allow him to breath thru. I pray it all goes well.
Michael douglas went thru this and seems to be in remission. I am so Thankful for that.
His beautiful wife, Catherine Zeta Jones... She ended up in the looney bin. I can see why!
(I wonder if she ever dropped the ball on the Blue-Capped Vial of Blood?)
I wish Cancer would.
I can't stand that word. It makes me want to rage and pull my hair out and go kick someone right where it hurts. You see, we all go on living our lives in such a bubble of innocence. Sure, I have friends and heard stories of cancer and illness. Who hasn't? But when it comes to visit YOUR house like some unwanted filthy houseguest to wreak havoc and steal your life, then you're changed forever.
Yesterday our office trip to Inner Vision for the PET Scan began at 7:45 am.
Blood work, EKG, Chest xRay, another CT Scan ended at 3:00. 4:00 was the consult with the surgeon for the biopsy on Wed morning surgery.
It's funny, the nurses give YOU the blood to take to the lab be analyzed. They also give YOU a CD that holds your life on a disk. All of your scans, reports and results are on this disk. I wanted to take it home put it in my MacBook and hit "Reject."
Be gone you cancer bastard!
They gave me his 4 vials of blood to take to the lab. I had it sitting right next to me in the passenger seat of my car like a VIP passenger. One 1st class ticket to the lab.
I get it there safely and the tech tells me I didn't have the "Blue-Capped" vial of Blood.
What the hell does that mean?
I have this blood in a sealed bag with red and yellow stickers all over it. I stood there like some confused passenger that ended up in Shanghai when they were supposed to have landed on a beach in Monaco.
I think my mouth was even gapped open in confusion as I stood there at the lab window.
The rude tech said "You didn't bring the Blue Capped Vial of Blood. Go get it! You have to go get it! I need more blood here, lady!"
I felt as tho I had failed everyone. I had one task to do and I couldn't even do that right.
I stood there in the middle of the Medical Arts building in my wrinkled up linen suit and cried.
I completely lost it.
I don't mean tears running down my face, I mean full-blown sobbing and wailing. It wasn't pretty. I can usually hold it together but I even failed at that.
I completely lost it. It took restraint to keep from throwing myself on the marble floors and curl up in a fetal position and cry...
I did finally pull it together, went back to Inner Vision, got the nurse to enter the suite that my husband was getting his juice for the PET Scan, draw more blood and took it back to the lab.
I truly wanted to pull a scene like from the movie "Carrie" and envision all that blood on that rude lab tech dripping down her head and say "Here! Here's your Blue Capped Vial of Radioactive Blood!"
These days I look at my husband and cry.
I thought I was this strong strong woman. Boy, was I wrong. I have been thru some unspeakable things in my life. My childhood could be a really bad Made for TV Movie and I thought it made me like work-horse strong. I thought so many things about myself that I am finding to be horribly wrong.
The thought of what lies ahead for him makes me shudder.
If his prognosis is simply Stage 4 Squamous Carcinoma of the Throat, he is in for some really rough months ahead. If it is worse than that... I can't even imagine it.
Each and every note from all of you has gotten us thru and my husband and I appreciate them and your wonderful offers of Hope and Support more than you could ever know.
I have been given hundreds of perfect stranger's home phone numbers to call and
Offers....
I have had offers from people to come live with them during this.
I have had offers to come here to cook and clean for us.
Offers to do our laundry.
One sweet and wonderful friend has offered to let me call her at 4 a.m. or any time just to weep and she will listen in support.
I have had offers to drive us around to appointments.
I have had offers to take our two dogs until this nightmare is over.
I have had offers to call Doctors in Huston and pull strings for quick entry into the medical system there.
So many offers.
Most importantly, I have had thousands of offers to PRAY.
Prayers from perfect strangers. What amazing people all of you are. I am so Blessed.
Truly Blessed.
Tomorrow is the biopsy surgery. If all goes well, we will have answers and options.
If not, I don't know. The surgeon will put a probe with a camera down his throat. He will look inside his throat lungs, esophagus, stomach etc. They will hopefully get a tube past the cancer in his throat to breath for him during surgery. If the cancer has blocked that tiny hole then they will have to do a tracheotomy which is cut a hole in his throat to allow him to breath thru. I pray it all goes well.
Michael douglas went thru this and seems to be in remission. I am so Thankful for that.
His beautiful wife, Catherine Zeta Jones... She ended up in the looney bin. I can see why!
(I wonder if she ever dropped the ball on the Blue-Capped Vial of Blood?)
Sunday, June 19, 2011
What's in the Future?
What does the future hold for anyone?
We go thru each day doing our daily activities and never know what the future will hold. We have been experiencing a Time Warp of a Future on Crack! We don't know what we will be doing tomorrow, the next day or even next week.
I blew up my car. Do we buy a new one or do I stick with my Company Car even tho I'm not doing "company" things? Do I even need a car right now? Does that even matter?
In the Grand Scheme of thing....No!
Tomorrow is the PET Scan which is a full-body scan to see what's going on inside you. They inject you with a mixture of radiation dye and glucose. No carbs or sugars the night before or you will overload. They leave that hot-juice in your body for 1 hour then run you thru the scan to detect anything and everything inside you.
If this cancer has spread beyond the head and neck, we are FUCKED! Sorry but it's the only way I care to describe it.
Yesterday, we were to attend our friends daughter's gala wedding but instead, we went to look for cemetery plots. Not that we are not being positive here, we are just being REAL.
I had shopped and searched for the perfect dress for the last 2 weeks for this wedding. It was crucial that I have the right style and look like class. Everyone we know was invited.
A gorgeous Zac Posen dress was in my possession with cute Jimmy Choo shoes to match. I was giddy with excitement. You know how it is when you feel your outfit for that upcoming special event looks good on you and you just know you will feel confident and the stress of being worried about your style is non existent. Ha!
That dress and shoes don't mean a thing. Handbags and lipsticks? They mean zilch.
JuicyTuesday wrote me a note and told me something that really sticks in my head....
Health is Wealth
I will write that again....
Health is Wealth.
Anyway, back to Zac Posen.
I told a dear friend of mine that we were going to spend our day on Saturday not going to the wedding but instead going to find Eternal resting places side by side. She gave me one very good idea...
Wear the Zac Posen to the cemetery!
I did just that.
My darling husband, Jimmy Choo, Zac Posen and I all traipsed thru the serene grounds and we found the perfect place.
You may think I am being morbid. It wasn't at all. It was actually very peaceful and had a comforting presence there among the tall trees and beautiful quiet of flowers and silence. We found a spot near a sloping hill with sunshine and whispering trees nearby.
I hope all of you don't get depressed by my blog. It's theraputic for me. I am usually crying big tears as I type. It's also a way for me to express my thoughts and give family and far away friends an update. I know I need to announce this to my wonderful YouTube viewers in a video but I am so raw right now, I'm not sure I can. I appreciate you all more than you know. Each and every note and letter I get is going in the pocket inside my husbands heart tomorrow and all the good wishes and prayers will be going thru that PET Scan as well and I hope they come out on the other side with just ONE day of GOOD news.
If not...
We go thru each day doing our daily activities and never know what the future will hold. We have been experiencing a Time Warp of a Future on Crack! We don't know what we will be doing tomorrow, the next day or even next week.
I blew up my car. Do we buy a new one or do I stick with my Company Car even tho I'm not doing "company" things? Do I even need a car right now? Does that even matter?
In the Grand Scheme of thing....No!
Tomorrow is the PET Scan which is a full-body scan to see what's going on inside you. They inject you with a mixture of radiation dye and glucose. No carbs or sugars the night before or you will overload. They leave that hot-juice in your body for 1 hour then run you thru the scan to detect anything and everything inside you.
If this cancer has spread beyond the head and neck, we are FUCKED! Sorry but it's the only way I care to describe it.
Yesterday, we were to attend our friends daughter's gala wedding but instead, we went to look for cemetery plots. Not that we are not being positive here, we are just being REAL.
I had shopped and searched for the perfect dress for the last 2 weeks for this wedding. It was crucial that I have the right style and look like class. Everyone we know was invited.
A gorgeous Zac Posen dress was in my possession with cute Jimmy Choo shoes to match. I was giddy with excitement. You know how it is when you feel your outfit for that upcoming special event looks good on you and you just know you will feel confident and the stress of being worried about your style is non existent. Ha!
That dress and shoes don't mean a thing. Handbags and lipsticks? They mean zilch.
JuicyTuesday wrote me a note and told me something that really sticks in my head....
Health is Wealth
I will write that again....
Health is Wealth.
Anyway, back to Zac Posen.
I told a dear friend of mine that we were going to spend our day on Saturday not going to the wedding but instead going to find Eternal resting places side by side. She gave me one very good idea...
Wear the Zac Posen to the cemetery!
I did just that.
My darling husband, Jimmy Choo, Zac Posen and I all traipsed thru the serene grounds and we found the perfect place.
You may think I am being morbid. It wasn't at all. It was actually very peaceful and had a comforting presence there among the tall trees and beautiful quiet of flowers and silence. We found a spot near a sloping hill with sunshine and whispering trees nearby.
I hope all of you don't get depressed by my blog. It's theraputic for me. I am usually crying big tears as I type. It's also a way for me to express my thoughts and give family and far away friends an update. I know I need to announce this to my wonderful YouTube viewers in a video but I am so raw right now, I'm not sure I can. I appreciate you all more than you know. Each and every note and letter I get is going in the pocket inside my husbands heart tomorrow and all the good wishes and prayers will be going thru that PET Scan as well and I hope they come out on the other side with just ONE day of GOOD news.
If not...
Saturday, June 18, 2011
Scans and Needles and Probes... Oh My!
Remember what seems like months ago but was only days ago I was BEGGING for answers?
Ha! Now I don't want any more answers. I want to rewind to two weeks ago when we were just a normal happy American couple living the normal happy American Dream.
Working, laughing, enjoying life as everyone else does.
R-E-W-I-N-D
If only it could be that easy.
I look at my husband and I have to rush to a room where I can close the door or hide behind a bed or wall to cry. I must stay strong. If he sees me break I swear he may crumble and we have the fight of our lives ahead of us.
We drove for miles to get a biopsy consult. This was supposed to be No Big Deal. The Ear Nose and Throat specialist was to tell us what kind of biopsy and how the procedure would go. Instead, he read the previous CT Scans and decided to do a light probe right there in the office. He stuck a very long piece of cotton gauze soaked in a numbing agent up his nose, left it there 10 minutes, came back and then shoved a light down his throat and looked around.
As of now the official name is Squamous Cell Carcinoma of the Tonsils and Throat.
The EXACT same cancer that Michael Douglas had.
But....
He has ordered more tests. A PET Scan, EKG ( to see if he's strong enough for what's ahead) and more Blood work on Monday.
A PET Scan is a full body scan to check to see if this monster has spread to other organs.
Dear God, please let it not have spread.
The lymph glands are 3 times the size of what they should be and his windpipe is being strangled by these cancerous tumors. There are 6 lymph glands in your neck. 5 of his are huge and growing.
Time is not our friend anymore.
We used to make lists of things we had to do:
*Fly to Miami
*Gas up the cars
*Pack for a trip
*Buy new shoes and a dress for a gala event
*Go to a Wedding today
Yesterday, we made an entire new kind of list that made me want to hide in a closet and never come out:
*Buy a cemetery plot
*Pre-pay for our funerals
*Get our banking affairs in order
*Tell his 95 year old mom that her only son has Stage 4 cancer
*Meet with all the kids and break the news
*Tell as many of our friends that we can
*Call our dear friend and cancel our plans to attend his daughter's wedding. (I bought the most fabulous Zac Posen dress to wear but now Who really cares?)
*Find a doctor in Huston TX at MD Anderson that specializes in this type of cancer
*Decide if before treatment begins to get a feeding tube placed because his throat will be burnt to shreds by the radiation. Drinking water will be like entering the gates of hell for 6 to 8 weeks of radiation and chemo.
I apologize for being so depressing. You all know me. I am always one to make droll boring things into funny fabulous things. I can't seem to find one thing fun or fabulous anymore. At least not right now....
Ha! Now I don't want any more answers. I want to rewind to two weeks ago when we were just a normal happy American couple living the normal happy American Dream.
Working, laughing, enjoying life as everyone else does.
R-E-W-I-N-D
If only it could be that easy.
I look at my husband and I have to rush to a room where I can close the door or hide behind a bed or wall to cry. I must stay strong. If he sees me break I swear he may crumble and we have the fight of our lives ahead of us.
We drove for miles to get a biopsy consult. This was supposed to be No Big Deal. The Ear Nose and Throat specialist was to tell us what kind of biopsy and how the procedure would go. Instead, he read the previous CT Scans and decided to do a light probe right there in the office. He stuck a very long piece of cotton gauze soaked in a numbing agent up his nose, left it there 10 minutes, came back and then shoved a light down his throat and looked around.
As of now the official name is Squamous Cell Carcinoma of the Tonsils and Throat.
The EXACT same cancer that Michael Douglas had.
But....
He has ordered more tests. A PET Scan, EKG ( to see if he's strong enough for what's ahead) and more Blood work on Monday.
A PET Scan is a full body scan to check to see if this monster has spread to other organs.
Dear God, please let it not have spread.
The lymph glands are 3 times the size of what they should be and his windpipe is being strangled by these cancerous tumors. There are 6 lymph glands in your neck. 5 of his are huge and growing.
Time is not our friend anymore.
We used to make lists of things we had to do:
*Fly to Miami
*Gas up the cars
*Pack for a trip
*Buy new shoes and a dress for a gala event
*Go to a Wedding today
Yesterday, we made an entire new kind of list that made me want to hide in a closet and never come out:
*Buy a cemetery plot
*Pre-pay for our funerals
*Get our banking affairs in order
*Tell his 95 year old mom that her only son has Stage 4 cancer
*Meet with all the kids and break the news
*Tell as many of our friends that we can
*Call our dear friend and cancel our plans to attend his daughter's wedding. (I bought the most fabulous Zac Posen dress to wear but now Who really cares?)
*Find a doctor in Huston TX at MD Anderson that specializes in this type of cancer
*Decide if before treatment begins to get a feeding tube placed because his throat will be burnt to shreds by the radiation. Drinking water will be like entering the gates of hell for 6 to 8 weeks of radiation and chemo.
I apologize for being so depressing. You all know me. I am always one to make droll boring things into funny fabulous things. I can't seem to find one thing fun or fabulous anymore. At least not right now....
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