So I failed to mention something pretty awesome. I got so excited about a diagnosis that I failed to mention something I was leading up to.
I had mentioned that the doctor said it was not likely that I would recover from the cranial nerve palsy. The damage that is done is usually permanent. After I got the stitches removed at my last appointment Dr. asked me to stick out my tongue and wiggle it. I wiggled it all over the place. To the left... to the right. Up down and all around! I have full function of my tongue again!!! No more Sid the Sloth! No more almost drooling!
We talked a little more about other things and he asks me to stick out my tongue and wiggle it again. He was so excited. "Man I wouldn't have given you even a 10% chance of that happening. What a blessing!" I am pretty excited too and very grateful! Small miracles...a big blessing!
Monday July 18th - Meeting the oncologist day.
So Cindy and I get dropped off at the Huntsman center. The doors aren't open. They asked me to be there early and my appointment was at 8:00. So why aren't they open? Uh...are we at the wrong place? A gal showing up for work walks up to us and determines we are at the wrong place. We needed to be on the 3rd floor of the Budge clinic. There is an oncology department over there? Huh...now we know. So we booked it over to the budge clinic on foot. Not too bad. I just hate being late for appointments.
We get in there and get asked a lot of the same questions that I got asked at my other first appointments. The Dr. gets in and he is a really cool guy, with a really cool accent. :-)
So it looks like my cells are dividing slowly. He said that is good and bad. I didn't get to ask why. That goes on my questions to ask the Dr. list.
I will have to go to SLC to receive the chemo used to treat what I have. It takes the big nasty chemo and the right team of nurses and doctors to monitor that treatment. Okay.
The Dr. tells me the scans and procedures that he needs before we get started. The one that he wanted to do right then was the bone marrow biopsy. Okay
The nurse that is taking care of that treatment gets us into another room a bit later and gets me prepped for that biopsy. I am lying on my stomach with my hips exposed. The Dr comes in and says, "change of plans". LDS hospital wants to admit me and get all the scans and tests done there. They will have the results super quick if it's done that way. Okay
I get put back together and they tell me to wait for a phone call from LDS hospital. Off we go.
I go to work. My Clinical Coordinator with the Intermountain Acute Leukemia and Blood & Marrow Trasnplant Program calls and tells me what they want to do tomorrow. Her title alone freaks me out. WHO ARE YOU and WHAT ARE YOU GOING TO DO TO ME! {LOL...It will be okay} I will do the PET scan at the Intermountain Regional Center in SLC and then when that is done I will travel over to LDS hospital where they will admit me and do all the tests. They will also do the first round of chemo. {Come again...wasn't expecting that so soon} She says to plan on being there......a week. WHAT!?
She needs to talk with some of the specialist and she will call or email me with more info later.
I call Debbie at this point! "Debbie I know you just dropped Abby off on Saturday, but she needs to come back up again...It's go time". Of course they are ready and willing. Bless them. Once again I can't do any of this with out my people.
I get the email from my coordinator and it says to plan on staying SEVERAL weeks. aghhhhh....am I packing for vacation at the most expensive hotel on the planet? Yes....yes I am. Something tells me this won't be any sort of vacation. Still don't know what exactly is happening. We will find out tomorrow. I will meet with "the team" down there and go over all the details of the treatment plan. It is all happening so quickly. I am hoping this also means I will get to the other side of this quickly as
well.
I get to go in fasting {boo} but I get to drink {Yay!}
Oh Boy! Off we go!
Monday, July 18, 2016
Thursday, July 14, 2016
Part 2 Surgery and a Diagnosis
{Part 1 is further down if you haven't read that yet}
Tuesday July 5th - Abby has been picked up by Heather to head up to the "Idaho contingent". {Phrase coined by my Dad - Bruce Cameron} She will be staying with Debbie, Brad and Family and with Eric, Heather and Family. Thank you! I worry most about Abby and how to deal with her and her needs and being crazy sick. I am blessed with great family and a strong village. It is the only way this will go well!
Wednesday July 6th - I go to work and plow through my work load knowing I won't be there for several days. I end up not eating lunch. I tell myself I am just practicing for the fast that needs to start at 12 midnight. I of course start to get a headache. Oh no!
I get home and eat dinner and then get a text from Natalie. How are you doing? Don't forget to pack a back to stay with us tomorrow. Do you want a blessing tonight or in the morning?
I am of course worried about being scared and hungry the next day. After that comes the call. Get your butt over here. {Not quite those exact words} We will keep your mind off of tomorrow, give you a blessing and make sure you are not alone.
THAT is the stuff that gets you through things! I am learning to accept help. Not exactly my strong suit. I will get plenty of practice in the days to come. Of that I am sure!
Thursday July 7th - The BIG DAY! I wake up with a MIGRAINE!!!!! This is okay actually. Who has time to be scared when you have a migraine? I mean you can't think let alone be nervous! That is my Pollyanna moment.
I called the day before and my surgery is scheduled for 1pm. Be there at 11:45am.
At about 9am they call me and tell me that things are postponing and not to get there until 12:45pm. Dang it! I'm hangry and I have a migraine!
We finally go. Cindy Mama is taking me. We get checked in, get into the waiting room, get gowned up and get asked a million questions. They IV nurse comes in and tells me I'm not "generous". Ya... she's the one! I end up with an IV in my wrist! Maybe that's normal.... but...Ouch! So they turn the lights out and hooked me up with better ice packs. I will just chill with an ice pack on my face and neck until it is finally time to roll.
They ask Cindy if she'd like a drink. She says yes and they bring her a Diet Coke and a cup of ice. We'll she ends up spilling the ice and making a huge icy mess all of the floor! Ha! I think it's hilarious. She doesn't. Ha Ha! No she does too. Talk about an ice breaker to relieve some stress! {I'm here all night} She gets things cleaned up and gets settled in. We are going to be here a while.
Another doctor has a patient that is taking WAY longer than scheduled and my time keeps getting bumped. Once again, thank you for the migraine, I could care less what time it is or what's going on. I am in pain!
While we are waiting the ice pack on my face has done a thorough job of pretty much freezing my forehead solid. I flip it up on top of my head AND all the ice and melted water dumps down my head and down my back, completely soaking my pillow and the blanket I was using. OOPSIE!!!! They are going to ban us from having any ice in this hospital! Cindy gets a new pillow and blanket and we get settled again. Aren't we quite the pair. :-)
The Doctor comes in and draws the line on my neck where he will be making the incision and tells me he is ALMOST ready to go in with the patient that was scheduled before me. We still need to wait.
Next thing I know the anesthesiologist is coming to take me back. As he wheels me back he is asking about my migraine. He asks what sets them off and what I do to relieve them. I tell him: stress, lack of sleep and hunger, to the first question. Sleep, food, drugs and caffeine for the second. He tells me that maybe he can get some caffeine in my drip so the migraine is gone when I come out of surgery.
In I go to surgery. One minute I am getting on the table and we are laughing at joke* the Doctor made and the next minute the nurse is saying, "there you are", as I am coming out of anesthesia.
*The joke: Dr comes in out of the hallway through the flappy doors. He is laughing at something someone said in the hall. "Oh....I am just a little disoriented! Chuckle Chuckle". I laugh, cause I know how funny my doctor is. The anesthesiologist pipes in, "Oh...he isn't really disoriented"! Ha Ha I wasn't worried! No one like a disoriented surgeon!
She gives me ice and I am having to tell myself to swallow. My brain doesn't want to. It hurts! I can feel where the incision was. The nurse asks if I am in pain and she ups the meds and gives me more ice. Doctor comes over and see's how I am doing. I smile. I cry a little. He tells me it's definitely lymphoma. I cry a little more. I hurt. He asks if it's because of the diagnosis or because of the pain. *** It's the pain! She gives me more drugs.
Next thing I know I am being wheeled to recovery.
***Before I get to recovery the Doctor asks Cindy if I understood what the possibility was that it was lymphoma. She said yes. Not until she heard my end of the story did she understand what had happened. He was concerned that the tears were because of the diagnosis. He was happy that I woke up with a smile. It was a risk taking the nodes on the nerves. It could have caused paralysis. Yay for waking up with a smile!
Another nurse comes in and tells me we can finally get something to drink. Let's get rid of the migraine. She asks what I'd like to drink. I tell her I better have water because the anesthesiologist put some caffeine in my drip. She looks at Cindy and gives her a "what the heck" look and they start laughing. "JUST BRING ME A DR. PEPPER!" Apparently there is not a caffeine drip! All these doctors are clowns!
We take a bit coming out of recovery and it's time to go home. The nurse is awesome and sends me home with two cups of warm chicken noodle soup. How stinkin' awesome is that!?
The Doctor was hoping for an immediate understanding of what I had. The pathologist said I have "old man" cancer. Then he looked at my charts. Well that doesn't work. SO off to SLC with the nodes and they will see what they can determine.
Home and DRUGS!!!!
I know we got home and I parked it in the living room recliner at the Harpers and that is were I stayed for a bit. The rest is foggy.
I remember getting up to go to the bathroom. YAY! Cause it took a lot of effort.
and....that's it! DRUUUUUGS!!!!!!
Friday July 8th - I have to get up to go get the drain taken out. I wear my pajamas cause I really don't care. Luckily I got lots of compliments on my sweet pants at the hospital the day before so I know they don't look too bad. {False Security}
Cindy and Ken take me in. Ken waits in the waiting area. We get to the room and Doc comes and says, "Amy...you are a bit of an anomaly". I am thinking..why! ...is my heart on the wrong side of my body! Am I a medical freak!? He just tells me that it's rare to have patients deal with the information I have been given and be so good about it. I've always been so positive when I see him. I just told him that's the way it's got to be. We can write a whole 'nother post on that later.
Doctor starts taking out the tube.
Let me tell you something about myself. I can NOT give blood. I faint. It's not the needles it's the feeling of things exiting my body that weirds me out. I can't control it.
The feeling of the tube coming out is ten times worse. I grab his hands with my eyes open wide and I start to loose it. He says it's pretty long and to hold on he almost has it out. He gets it out and I'm going south.
Cindy is calling my name and I tell her I am trying to breath through it. The Doctor and Nurse get me over to the chair with arms and out I go.
Then I come back... "oh...that's better I see the color coming back".
Good grief!
I go back to the recliner at the Harper's and reside there for the next few days. We all watch "ALONE" on tv that evening and get hooked.
Saturday July 9 - I remember Natalie making sugar cookies, because it's National Sugar Cookie Day!
I remember Cousin Owen coming to bring me flowers and meeting his awesome sweetheart.
I remember watching Parks and Rec with Hallie and laughing really hard even though it hurt to laugh. I remember zoning out because of the drugs, but still laughing when everyone else laughed. It was involuntary and super hilarious in my mind. I am laughing just as an auto response to other people laughing and I giggle to myself. It was loud enough that I don't think anyone noticed I was doing it. DRUGS!!!!
It's funny as I am writing this a couple of days later. I can't remember what I don't remember. I am sure something will trigger a memory but right now...Drugs.
I slept A LOT.
Ended the night with another few episodes of "Alone" it's sooooo gooood!
Sunday July 10 - I am now sick of being on drugs. It is making me feel crazy and I can't stand how much I am falling asleep. I want to read my book and my eyes keep crossing and then I fall asleep. Priorities! Sleep all day after surgery and get the rest I need OR read my book. Come on!
I try taking just ibuprofen on my next round mid morning. As Natalie is leaving for church at 1pm she asks if I need anything and I couldn't respond. As I start to talk I can't form the words and my jaw starts quivering. It is NOT time for lighter drugs. Back on the heavy stuff. That was weird and scary. Another day of sleeping for me.
We have just a nice evening of reading books {trying on my part} taking naps {had by all} and just relaxing. A nice storm came through on Sunday and cooled things off quite nicely.
Monday July 11 - Still feeling like crap. Today I make a concerted effort to bounce between Tylenol and Ibuprofen today. I also decide to head home. I am more alert today so I though I should get home and see what that does. The Stevens and the Harper kids drove me home. We stopped by Sam's on the way home and it got me moving.
I did pretty good. I tried sleeping in my bed. It did not go well. I am going to have to sleep on the couch.
Tuesday July 12 - I went back to work. Not too bad. I got a few hours in and came home at 2. Went home and slept the rest of the night.
Wednesday July 13 - Wake up and need to get in early for a meeting. I now know how people feel that can't wake up in the morning. I have the opposite problem. Can't stay asleep past 5 am. NOT anymore! It is hard coming out of a drug induced sleep. I am super nauseated today. I only last 'til 1pm. I can't get rid of the nausea. The migraine comes back like it usually does when I get them. Super rough night.
Thursday July 14 - Didn't sleep well at all!!!!! I've fallen off the med cycle and I've had a hard time keeping track. I let the pain get out of control. I wake up just sick! The migraine is one of those "after migraines" the ghosties that come back. They aren't as bad. I think I will be okay. Still can't get the nausea to go away. I take my Zophran and it helps a bit.
Off to the doctors to get my stitches out. Again Ken and Cindy take me over. Ken waits in the car this time. He is getting smart. We get in and he takes out the stitches. No fainting spells this time! YAY. One yank and it was all out! Phew!
The results are back. I thought I would have to wait until I meet with the oncologist on Monday.
I have MANTLE CELL LYMPHOMA I do have old man cancer! I feel entitled to buy my own recliner now!
The nodes were HUGE. 6 CM on one of them. Holy Gravy! There are 11 nodes with this happening to them. The other term they used was Low-Grade lymphoproliferative disorder. Someone can google that. I am abstaining from google searches. I will keep with the information I am told by the Doctors. I have chosen not to worry about things that come from over exploring the topic. This is just my way of staying blissfully ignorant!
I see the Oncologist on Monday the 18th.
That concludes getting everything up to date. I will try and post regularly to keep everyone informed. I don't really want to use Facebook as the medium for communication. I know group texts are awful and I will gravitate away from doing that now that this is available.
Please ask questions. I will get them answered. For everything one thing that I have written I am sure I have left out about 10 more items of information!
Love you all! I feel your prayers, good thoughts and happy juju!
We can do this!
{Part 1 is further down if you haven't read that yet}
Tuesday July 5th - Abby has been picked up by Heather to head up to the "Idaho contingent". {Phrase coined by my Dad - Bruce Cameron} She will be staying with Debbie, Brad and Family and with Eric, Heather and Family. Thank you! I worry most about Abby and how to deal with her and her needs and being crazy sick. I am blessed with great family and a strong village. It is the only way this will go well!
Wednesday July 6th - I go to work and plow through my work load knowing I won't be there for several days. I end up not eating lunch. I tell myself I am just practicing for the fast that needs to start at 12 midnight. I of course start to get a headache. Oh no!
I get home and eat dinner and then get a text from Natalie. How are you doing? Don't forget to pack a back to stay with us tomorrow. Do you want a blessing tonight or in the morning?
I am of course worried about being scared and hungry the next day. After that comes the call. Get your butt over here. {Not quite those exact words} We will keep your mind off of tomorrow, give you a blessing and make sure you are not alone.
THAT is the stuff that gets you through things! I am learning to accept help. Not exactly my strong suit. I will get plenty of practice in the days to come. Of that I am sure!
Thursday July 7th - The BIG DAY! I wake up with a MIGRAINE!!!!! This is okay actually. Who has time to be scared when you have a migraine? I mean you can't think let alone be nervous! That is my Pollyanna moment.
I called the day before and my surgery is scheduled for 1pm. Be there at 11:45am.
At about 9am they call me and tell me that things are postponing and not to get there until 12:45pm. Dang it! I'm hangry and I have a migraine!
We finally go. Cindy Mama is taking me. We get checked in, get into the waiting room, get gowned up and get asked a million questions. They IV nurse comes in and tells me I'm not "generous". Ya... she's the one! I end up with an IV in my wrist! Maybe that's normal.... but...Ouch! So they turn the lights out and hooked me up with better ice packs. I will just chill with an ice pack on my face and neck until it is finally time to roll.
They ask Cindy if she'd like a drink. She says yes and they bring her a Diet Coke and a cup of ice. We'll she ends up spilling the ice and making a huge icy mess all of the floor! Ha! I think it's hilarious. She doesn't. Ha Ha! No she does too. Talk about an ice breaker to relieve some stress! {I'm here all night} She gets things cleaned up and gets settled in. We are going to be here a while.
Another doctor has a patient that is taking WAY longer than scheduled and my time keeps getting bumped. Once again, thank you for the migraine, I could care less what time it is or what's going on. I am in pain!
While we are waiting the ice pack on my face has done a thorough job of pretty much freezing my forehead solid. I flip it up on top of my head AND all the ice and melted water dumps down my head and down my back, completely soaking my pillow and the blanket I was using. OOPSIE!!!! They are going to ban us from having any ice in this hospital! Cindy gets a new pillow and blanket and we get settled again. Aren't we quite the pair. :-)
The Doctor comes in and draws the line on my neck where he will be making the incision and tells me he is ALMOST ready to go in with the patient that was scheduled before me. We still need to wait.
Next thing I know the anesthesiologist is coming to take me back. As he wheels me back he is asking about my migraine. He asks what sets them off and what I do to relieve them. I tell him: stress, lack of sleep and hunger, to the first question. Sleep, food, drugs and caffeine for the second. He tells me that maybe he can get some caffeine in my drip so the migraine is gone when I come out of surgery.
In I go to surgery. One minute I am getting on the table and we are laughing at joke* the Doctor made and the next minute the nurse is saying, "there you are", as I am coming out of anesthesia.
*The joke: Dr comes in out of the hallway through the flappy doors. He is laughing at something someone said in the hall. "Oh....I am just a little disoriented! Chuckle Chuckle". I laugh, cause I know how funny my doctor is. The anesthesiologist pipes in, "Oh...he isn't really disoriented"! Ha Ha I wasn't worried! No one like a disoriented surgeon!
She gives me ice and I am having to tell myself to swallow. My brain doesn't want to. It hurts! I can feel where the incision was. The nurse asks if I am in pain and she ups the meds and gives me more ice. Doctor comes over and see's how I am doing. I smile. I cry a little. He tells me it's definitely lymphoma. I cry a little more. I hurt. He asks if it's because of the diagnosis or because of the pain. *** It's the pain! She gives me more drugs.
Next thing I know I am being wheeled to recovery.
***Before I get to recovery the Doctor asks Cindy if I understood what the possibility was that it was lymphoma. She said yes. Not until she heard my end of the story did she understand what had happened. He was concerned that the tears were because of the diagnosis. He was happy that I woke up with a smile. It was a risk taking the nodes on the nerves. It could have caused paralysis. Yay for waking up with a smile!
Another nurse comes in and tells me we can finally get something to drink. Let's get rid of the migraine. She asks what I'd like to drink. I tell her I better have water because the anesthesiologist put some caffeine in my drip. She looks at Cindy and gives her a "what the heck" look and they start laughing. "JUST BRING ME A DR. PEPPER!" Apparently there is not a caffeine drip! All these doctors are clowns!
We take a bit coming out of recovery and it's time to go home. The nurse is awesome and sends me home with two cups of warm chicken noodle soup. How stinkin' awesome is that!?
The Doctor was hoping for an immediate understanding of what I had. The pathologist said I have "old man" cancer. Then he looked at my charts. Well that doesn't work. SO off to SLC with the nodes and they will see what they can determine.
Home and DRUGS!!!!
I know we got home and I parked it in the living room recliner at the Harpers and that is were I stayed for a bit. The rest is foggy.
I remember getting up to go to the bathroom. YAY! Cause it took a lot of effort.
and....that's it! DRUUUUUGS!!!!!!
Friday July 8th - I have to get up to go get the drain taken out. I wear my pajamas cause I really don't care. Luckily I got lots of compliments on my sweet pants at the hospital the day before so I know they don't look too bad. {False Security}
Cindy and Ken take me in. Ken waits in the waiting area. We get to the room and Doc comes and says, "Amy...you are a bit of an anomaly". I am thinking..why! ...is my heart on the wrong side of my body! Am I a medical freak!? He just tells me that it's rare to have patients deal with the information I have been given and be so good about it. I've always been so positive when I see him. I just told him that's the way it's got to be. We can write a whole 'nother post on that later.
Doctor starts taking out the tube.
Let me tell you something about myself. I can NOT give blood. I faint. It's not the needles it's the feeling of things exiting my body that weirds me out. I can't control it.
The feeling of the tube coming out is ten times worse. I grab his hands with my eyes open wide and I start to loose it. He says it's pretty long and to hold on he almost has it out. He gets it out and I'm going south.
Cindy is calling my name and I tell her I am trying to breath through it. The Doctor and Nurse get me over to the chair with arms and out I go.
Then I come back... "oh...that's better I see the color coming back".
Good grief!
I go back to the recliner at the Harper's and reside there for the next few days. We all watch "ALONE" on tv that evening and get hooked.
Saturday July 9 - I remember Natalie making sugar cookies, because it's National Sugar Cookie Day!
I remember Cousin Owen coming to bring me flowers and meeting his awesome sweetheart.
I remember watching Parks and Rec with Hallie and laughing really hard even though it hurt to laugh. I remember zoning out because of the drugs, but still laughing when everyone else laughed. It was involuntary and super hilarious in my mind. I am laughing just as an auto response to other people laughing and I giggle to myself. It was loud enough that I don't think anyone noticed I was doing it. DRUGS!!!!
It's funny as I am writing this a couple of days later. I can't remember what I don't remember. I am sure something will trigger a memory but right now...Drugs.
I slept A LOT.
Ended the night with another few episodes of "Alone" it's sooooo gooood!
Sunday July 10 - I am now sick of being on drugs. It is making me feel crazy and I can't stand how much I am falling asleep. I want to read my book and my eyes keep crossing and then I fall asleep. Priorities! Sleep all day after surgery and get the rest I need OR read my book. Come on!
I try taking just ibuprofen on my next round mid morning. As Natalie is leaving for church at 1pm she asks if I need anything and I couldn't respond. As I start to talk I can't form the words and my jaw starts quivering. It is NOT time for lighter drugs. Back on the heavy stuff. That was weird and scary. Another day of sleeping for me.
We have just a nice evening of reading books {trying on my part} taking naps {had by all} and just relaxing. A nice storm came through on Sunday and cooled things off quite nicely.
Monday July 11 - Still feeling like crap. Today I make a concerted effort to bounce between Tylenol and Ibuprofen today. I also decide to head home. I am more alert today so I though I should get home and see what that does. The Stevens and the Harper kids drove me home. We stopped by Sam's on the way home and it got me moving.
I did pretty good. I tried sleeping in my bed. It did not go well. I am going to have to sleep on the couch.
Tuesday July 12 - I went back to work. Not too bad. I got a few hours in and came home at 2. Went home and slept the rest of the night.
Wednesday July 13 - Wake up and need to get in early for a meeting. I now know how people feel that can't wake up in the morning. I have the opposite problem. Can't stay asleep past 5 am. NOT anymore! It is hard coming out of a drug induced sleep. I am super nauseated today. I only last 'til 1pm. I can't get rid of the nausea. The migraine comes back like it usually does when I get them. Super rough night.
Thursday July 14 - Didn't sleep well at all!!!!! I've fallen off the med cycle and I've had a hard time keeping track. I let the pain get out of control. I wake up just sick! The migraine is one of those "after migraines" the ghosties that come back. They aren't as bad. I think I will be okay. Still can't get the nausea to go away. I take my Zophran and it helps a bit.
Off to the doctors to get my stitches out. Again Ken and Cindy take me over. Ken waits in the car this time. He is getting smart. We get in and he takes out the stitches. No fainting spells this time! YAY. One yank and it was all out! Phew!
The results are back. I thought I would have to wait until I meet with the oncologist on Monday.
I have MANTLE CELL LYMPHOMA I do have old man cancer! I feel entitled to buy my own recliner now!
The nodes were HUGE. 6 CM on one of them. Holy Gravy! There are 11 nodes with this happening to them. The other term they used was Low-Grade lymphoproliferative disorder. Someone can google that. I am abstaining from google searches. I will keep with the information I am told by the Doctors. I have chosen not to worry about things that come from over exploring the topic. This is just my way of staying blissfully ignorant!
I see the Oncologist on Monday the 18th.
That concludes getting everything up to date. I will try and post regularly to keep everyone informed. I don't really want to use Facebook as the medium for communication. I know group texts are awful and I will gravitate away from doing that now that this is available.
Please ask questions. I will get them answered. For everything one thing that I have written I am sure I have left out about 10 more items of information!
Love you all! I feel your prayers, good thoughts and happy juju!
We can do this!
Welcome Back!!!
Welcome back to the blog!
It's been SIX years since I last used this! Holy Cow! It still exists so I am going to use it!
Well I've told several people that I just need to start a blog so that everyone can keep up with the juicy details of the latest and greatest drama of 2016. Drum roll please.......CANCER!
So let's start from the beginning. This is going to be long so get comfy. No...I don't do short versions of stories.
October 2015 - I start getting ill. First cold/sinus juju of the fall/winter season sets in. It's a doozie and kind of opens the Gateway to Hell.
Just as I am finally starting to feel good again...
November/December 2015 - SHINGLES I. Have. Shingles. They hurt like hell! Imagine sharp needles in your skin and they are electrified. This on top of painful blisters. That was some serious sadness. My lymph nodes are swollen. I don't worry about it. I'm just really sick.
December/January 2016 - By the time I go to the Doctor in January she thinks I've had MONO through New Years. What were the symptoms? I can't move a muscle. NO ENERGY! My everything hurts. I get blood work done and what does it say? I have a high white blood cell count. Don't worry...my body is fighting a nasty infection! My lymph nodes are swollen. I don't worry about it. I'm just really sick.
That's puzzling. I feel sick, but with no direct symptoms of any illness in particular.
Soooo. My wisdom teeth had been bothering me and I had the sudden thought to go to the Dentist. I get seen by him right away and sure enough the X-rays show I have a jaw infection! Phew... that would be a good reason to have a high white blood cell count! Right!? My lymph nodes are swollen. I don't worry about it. I'm just really sick.
January 2016 - I take a course of antibiotics. The wisdom teeth come out. All is well. They came out well. No real drama there.
February 2016 - We head to Grandpa's funeral. When we get back it isn't even a solid week and I get a sore throat from Hell. Remember the Gates of Hell have been unleashed on me at this point! I go BACK to my Doctor. She says I don't have strep, but a really bad evil sore throat upper respiratory bad juju thing going on. "Take this....with that....if this isn't gone by Friday go to the emergency room you will have pneumonia if it hasn't gotten better" My lymph nodes are still swollen. I don't worry about it. I'm just really sick.
So a few months go by. I didn't have to go to the emergency room with pneumonia. No colds or nasties going on. Life is good. Until...."man my lymph nodes are still swollen"! They hurt! WHY!!!!! Now I am worried!
Thursday June 16 - I am starting to feel crappy again like I did when the whole jaw infection thing was going on. My jaw and ear are starting to hurt and I don't know why. I schedule an appointment with the Dentist to see what's up. Maybe the jaw infection is back? I don't know. He takes X-rays and tells me nothing is indicating that there is anything wrong. There is a slight swelling along the gums on the right side, but I may have bit down wrong on something and irritated it. I am still healing. Don't worry about it.
Sunday June 19 - I start to get "sick" again! This time I have shooting pains behind my right ear. Do I have an ear infection? The pain starts at the base of my skull and shoots up to the middle. It feels like a migraine, but it's in the wrong place, and it's not a "head ache". It is stabbing pain. I take some medicine to bring down the pain. Am I a hypochondriac?
Wednesday June 23 - I went to bed with a tingly numb tongue. Didn't think much of it until I woke up, brushed my teeth, and I couldn't spit out my toothpaste. It just went everywhere. I open my mouth and look in the mirror and my tongue is swollen! It is swollen right down the middle on the right side. I can't move my tongue to touch where my wisdom teeth used to be. This had become a habit since they were removed. I can not physically move my tongue to the right. My speech is slurred! CRAP! I mumble a call into the doctor to make an appointment TODAY!!!!
They get me in and it is busy! I have been blessed this entire experience for being seen, same day, no matter what the wait time. It takes a while, but I final get in with the Doctor. She asks me what's going on and she takes a look at my tongue. Her eyes got really big and she says, "I need to step out and contact another doctor." She leaves. I crap my pants. I sit there for about 15 minutes and she comes back in. "I've made you an appointment with a specialist. He will see you TODAY at 3:30 don't miss that appointment!"
I text my Cindy Mama and she gets my Ken Dad to come over and give me a blessing. It was a great blessing that will set the tone for how I handle what is to come. He takes Abby with him back to the house so I can sleep until the next doctors appointment.
I get to the ENT's office and again, I need to wait, but I am being seen same day! Super grateful!
He looks at my tongue, has me stick it straight out and then move it side to side. "Wait... do that again"! My tongue won't move to the right. He feels my swollen lymph nodes, but with the hands of a specialty doctor, he feels what the others didn't. A mass. There is something on my 12th cranial nerve. It's pretty much making it so the signals don't get to my tongue. I sound like Sid the Sloth at this point.
He orders CT scans of my brain and deep tissue scans of my neck. As the front desk is making the appointment with the labs at the hospital the nurse comes out and says, "he wants them done today...tomorrow at the latest!" Ughhh....now I'm getting nervous!
Thursday June 23rd - Off I go to radiology. I have only been in the hospital to give birth to Abby. That's it. I have had no major medical anything in my life. So I go to the appointment and they hand me the consent form. They should have a consent form FOR the consent form.
This consent form releases us from any mental or physical damage that may occur from reading the next consent form. Secondary consent form may cause major stress, diarrhea and the inability to control it. Known side are and not limited to: heart palpitations, nausea, high blood pressure and in severe cases....fainting. Please sign before reading the next consent form.
I get tagged and signed in and then taken back by the guy I now call "Captain IV". I go into the CT room and it is just me, "Captain IV" and the big scary scanner! The equipment is so big and powerful it is shaking the room. The humming it makes is really loud! I get to sit in a really fancy chair while I wait though. That is cool. I feel like a princess!
He gets everything he needs going and gets me on the scanny moving table thingy. He then has to get the IV in. NOBODY gets an IV in on this chick. I am not a very "generous" individual as another nurse put it. I tell him this while he is rolling veins. "Nobody can ever find them, they always end up in my hand". He tells me to just keep pumping my fist. I tell him it sucks because it hurts in my hand. He tells me he is already done. I tell him he is my hero and I am going to call him "Captain IV". He smiles.
In and out I go. Luckily it is not what I thought. Only my head goes in the tunnel of claustrophobia. I am able to handle it. He warns me that he has to do the next scan which is the contrast that needs the iodine. He tells me it's gonna feel warm going in and possible taste funny. It's definitely going to make me feel like I pee'd my pants. I am very glad he warned me!
All done. He says he needs to take out the IV and I start to whine about how that hurts and he says he is already done. I tell "Captain IV" that he gets 5 gold stickers today. I need him to come to every appointment where they have to give me an IV or take blood. He smiles.
Tuesday June 28 - Results time. Now Cindy Mama has banned me from going to appointments on my own. I don't ask enough questions. It's true. Plus you just need another set of ears. Did I hear that right?
He starts reading the radiologists written results. He is reading then thinking, reading out loud, processing..."huh that's weird. They didn't find anything". "Oh...wait that's your brain scan. Nothings wrong with your brain"! YAY!!! So onto the neck results. Yep you have the likely hood of lymphoma. The lymph nodes are huge, round and dense. Not just angry. If they were they would have clear fluid in the middle. Mine did not. We will have to biopsy and see what we are dealing with.
Well....
We went to look at the scans and the lab sent them wrong or they wouldn't pull up. So I got some really sweet hand drawn pictures from the doctor. I joke that I pay LOTS of money for scans and then get crude drawings for the results. Gotta love modern technology. It's only a modern marvel when it works! Still I got some pretty sweet drawings!
I asked if the surgery would bring any of the feeling back to my tongue or was it permanent? "It's usually pretty permanent". Once nerve damage occurs there isn't much hope for fixing that. Yet he was going to try. I am good with trying.
I get set up with a surgery date. He is going to do a node dissection. I was asked when the last time I took Ibuprofen was and of course it was that morning. The surgery can't happen until at least 10 after that. I get set up for Monday the 11th. Until later that day I get a call. The Doctor said no and moved it up to Thursday the 7th. Let's move this along.
End of Part I
It's been SIX years since I last used this! Holy Cow! It still exists so I am going to use it!
Well I've told several people that I just need to start a blog so that everyone can keep up with the juicy details of the latest and greatest drama of 2016. Drum roll please.......CANCER!
So let's start from the beginning. This is going to be long so get comfy. No...I don't do short versions of stories.
October 2015 - I start getting ill. First cold/sinus juju of the fall/winter season sets in. It's a doozie and kind of opens the Gateway to Hell.
Just as I am finally starting to feel good again...
November/December 2015 - SHINGLES I. Have. Shingles. They hurt like hell! Imagine sharp needles in your skin and they are electrified. This on top of painful blisters. That was some serious sadness. My lymph nodes are swollen. I don't worry about it. I'm just really sick.
December/January 2016 - By the time I go to the Doctor in January she thinks I've had MONO through New Years. What were the symptoms? I can't move a muscle. NO ENERGY! My everything hurts. I get blood work done and what does it say? I have a high white blood cell count. Don't worry...my body is fighting a nasty infection! My lymph nodes are swollen. I don't worry about it. I'm just really sick.
That's puzzling. I feel sick, but with no direct symptoms of any illness in particular.
Soooo. My wisdom teeth had been bothering me and I had the sudden thought to go to the Dentist. I get seen by him right away and sure enough the X-rays show I have a jaw infection! Phew... that would be a good reason to have a high white blood cell count! Right!? My lymph nodes are swollen. I don't worry about it. I'm just really sick.
January 2016 - I take a course of antibiotics. The wisdom teeth come out. All is well. They came out well. No real drama there.
February 2016 - We head to Grandpa's funeral. When we get back it isn't even a solid week and I get a sore throat from Hell. Remember the Gates of Hell have been unleashed on me at this point! I go BACK to my Doctor. She says I don't have strep, but a really bad evil sore throat upper respiratory bad juju thing going on. "Take this....with that....if this isn't gone by Friday go to the emergency room you will have pneumonia if it hasn't gotten better" My lymph nodes are still swollen. I don't worry about it. I'm just really sick.
So a few months go by. I didn't have to go to the emergency room with pneumonia. No colds or nasties going on. Life is good. Until...."man my lymph nodes are still swollen"! They hurt! WHY!!!!! Now I am worried!
Thursday June 16 - I am starting to feel crappy again like I did when the whole jaw infection thing was going on. My jaw and ear are starting to hurt and I don't know why. I schedule an appointment with the Dentist to see what's up. Maybe the jaw infection is back? I don't know. He takes X-rays and tells me nothing is indicating that there is anything wrong. There is a slight swelling along the gums on the right side, but I may have bit down wrong on something and irritated it. I am still healing. Don't worry about it.
Sunday June 19 - I start to get "sick" again! This time I have shooting pains behind my right ear. Do I have an ear infection? The pain starts at the base of my skull and shoots up to the middle. It feels like a migraine, but it's in the wrong place, and it's not a "head ache". It is stabbing pain. I take some medicine to bring down the pain. Am I a hypochondriac?
Wednesday June 23 - I went to bed with a tingly numb tongue. Didn't think much of it until I woke up, brushed my teeth, and I couldn't spit out my toothpaste. It just went everywhere. I open my mouth and look in the mirror and my tongue is swollen! It is swollen right down the middle on the right side. I can't move my tongue to touch where my wisdom teeth used to be. This had become a habit since they were removed. I can not physically move my tongue to the right. My speech is slurred! CRAP! I mumble a call into the doctor to make an appointment TODAY!!!!
They get me in and it is busy! I have been blessed this entire experience for being seen, same day, no matter what the wait time. It takes a while, but I final get in with the Doctor. She asks me what's going on and she takes a look at my tongue. Her eyes got really big and she says, "I need to step out and contact another doctor." She leaves. I crap my pants. I sit there for about 15 minutes and she comes back in. "I've made you an appointment with a specialist. He will see you TODAY at 3:30 don't miss that appointment!"
I text my Cindy Mama and she gets my Ken Dad to come over and give me a blessing. It was a great blessing that will set the tone for how I handle what is to come. He takes Abby with him back to the house so I can sleep until the next doctors appointment.
I get to the ENT's office and again, I need to wait, but I am being seen same day! Super grateful!
He looks at my tongue, has me stick it straight out and then move it side to side. "Wait... do that again"! My tongue won't move to the right. He feels my swollen lymph nodes, but with the hands of a specialty doctor, he feels what the others didn't. A mass. There is something on my 12th cranial nerve. It's pretty much making it so the signals don't get to my tongue. I sound like Sid the Sloth at this point.
He orders CT scans of my brain and deep tissue scans of my neck. As the front desk is making the appointment with the labs at the hospital the nurse comes out and says, "he wants them done today...tomorrow at the latest!" Ughhh....now I'm getting nervous!
Thursday June 23rd - Off I go to radiology. I have only been in the hospital to give birth to Abby. That's it. I have had no major medical anything in my life. So I go to the appointment and they hand me the consent form. They should have a consent form FOR the consent form.
This consent form releases us from any mental or physical damage that may occur from reading the next consent form. Secondary consent form may cause major stress, diarrhea and the inability to control it. Known side are and not limited to: heart palpitations, nausea, high blood pressure and in severe cases....fainting. Please sign before reading the next consent form.
I get tagged and signed in and then taken back by the guy I now call "Captain IV". I go into the CT room and it is just me, "Captain IV" and the big scary scanner! The equipment is so big and powerful it is shaking the room. The humming it makes is really loud! I get to sit in a really fancy chair while I wait though. That is cool. I feel like a princess!
He gets everything he needs going and gets me on the scanny moving table thingy. He then has to get the IV in. NOBODY gets an IV in on this chick. I am not a very "generous" individual as another nurse put it. I tell him this while he is rolling veins. "Nobody can ever find them, they always end up in my hand". He tells me to just keep pumping my fist. I tell him it sucks because it hurts in my hand. He tells me he is already done. I tell him he is my hero and I am going to call him "Captain IV". He smiles.
In and out I go. Luckily it is not what I thought. Only my head goes in the tunnel of claustrophobia. I am able to handle it. He warns me that he has to do the next scan which is the contrast that needs the iodine. He tells me it's gonna feel warm going in and possible taste funny. It's definitely going to make me feel like I pee'd my pants. I am very glad he warned me!
All done. He says he needs to take out the IV and I start to whine about how that hurts and he says he is already done. I tell "Captain IV" that he gets 5 gold stickers today. I need him to come to every appointment where they have to give me an IV or take blood. He smiles.
Tuesday June 28 - Results time. Now Cindy Mama has banned me from going to appointments on my own. I don't ask enough questions. It's true. Plus you just need another set of ears. Did I hear that right?
He starts reading the radiologists written results. He is reading then thinking, reading out loud, processing..."huh that's weird. They didn't find anything". "Oh...wait that's your brain scan. Nothings wrong with your brain"! YAY!!! So onto the neck results. Yep you have the likely hood of lymphoma. The lymph nodes are huge, round and dense. Not just angry. If they were they would have clear fluid in the middle. Mine did not. We will have to biopsy and see what we are dealing with.
Well....
We went to look at the scans and the lab sent them wrong or they wouldn't pull up. So I got some really sweet hand drawn pictures from the doctor. I joke that I pay LOTS of money for scans and then get crude drawings for the results. Gotta love modern technology. It's only a modern marvel when it works! Still I got some pretty sweet drawings!
I asked if the surgery would bring any of the feeling back to my tongue or was it permanent? "It's usually pretty permanent". Once nerve damage occurs there isn't much hope for fixing that. Yet he was going to try. I am good with trying.
I get set up with a surgery date. He is going to do a node dissection. I was asked when the last time I took Ibuprofen was and of course it was that morning. The surgery can't happen until at least 10 after that. I get set up for Monday the 11th. Until later that day I get a call. The Doctor said no and moved it up to Thursday the 7th. Let's move this along.
End of Part I
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