PET scan, bone marrow biopsy ( OMG that hurt! ) and Results

Ok. Whew.

I had my PET scan and bone marrow biopsy two days after my oncology appointment. All in one day. ONE day. Who knew that being in a hospital could make you feel so dirty? Yick. I digress. PET scan was first. They took me to this teeny tiny little room with a recliner. Started my IV, took my blood sugar, etc. Blood sugar was high even though I had not eaten since 7pm the night before. Nervous much? Anywho, the tech comes in with this steel box, opens it up, and pulls out this syringe protected by this steel tube thing. Way more nervous now. Obviously this crap isn't safe if it's doubly protected by steel. Sigh. She puts it into my IV, takes the IV out. She tells me I have to wait for an hour to let the radioactive crap swim around in my body. Lovely. She gets me a warm blanket, and I wait. and wait. and wait. In this teeny tiny little room. FINALLY she comes to get me and takes to get the scan. My arms above my head for 50 minutes or so. It was uncomfortable. Of course, I cried. Not because I was scared or hurt...but because each step in this process just makes it more real. Sucks. So after the 50 minutes, they do where the tumor was for another 15 minutes. I swear, it felt like I was in there forever! Gah. I hate those machines. After I got done, I called a friend from church. She came and got me, we ran to get a bite to eat, then over to the Dr's office. ( Well, across the hall to the treatment center. )

Walking into the treatment center was so difficult. Seeing patients sitting there looking so sick, they have lost all of their hair. Even a little boy, maybe 3 yrs old. I cried. It was so hard. I feel so bad for those that are so sick. I prayed for them, and tried to collect myself. The nurse calls my name, and takes me back to the room where they are going to torture me. Oh, but seriously. I walk by rooms where people are there with loved ones or alone, getting their treatment. Some are watching TV, snacking, talking. Some are asleep in beds. It was like a knife to my heart. So, I get back to the torture room. Ok, so it was a hospital-looking room. She tells to have a seat, and someone will be in. So I do, and again begin to cry. This is my life, now. It's scary, it's heartwrenching to see the other patients, it's hard. A nurse brought some supplies in for the torture test. Ok, bone marrow biopsy. So, I may be exaggerating a lil, although it does feel like torture. I digress. She asked what was wrong, and was so friendly...totally put me at ease. Everyone was great. Judeen ( the P.A. ) was a riot. She said " I just need to feel your ass" Which made me laugh and feel comfy. The biopsy/torture test was incredibly painful. They had a hard time getting me numb correctly. Judeen called in her associate, and she just went for it. Oh my God it hurt. I cried and cried. Sobbed. Almost jumped off the bed. I think at one point, I begged her to stop. I don't know how long this took, 1/2 hr to an hr, maybe..since I was so hard to get numb. Judeen held my hand after and apologized for putting me through hell. I got through it, but sometimes I get sick to my stomach just thinking about. They do this to kids too! The lil 3 yr old boy was in the next room over from me, and he did nothing but cry. That killed me.

Results of the PET Scan were negative! It didn't spread!! Thank you God. I go on the 17th to get the bone marrow results and talk treatment options, I think.

God is here though all of this. I know that. Do I feel it, no. None of it makes sense. Not one aspect of it. I love Jesus. Praying is hard for me. I can pray for others, but that's it. That's ok, I think. I know that many others are praying for me, having enough faith for me and loving on me. I'm very grateful to God that the cancer didn't spread, and I prayed a prayer of thanks. But, I'm sad for those sick people that I saw. I wonder why not them, why me? I certainly don't feel deserving. God has a plan for all of us, the sick and the not so sick with this damned disease. Just wish I knew what it was.

First Oncology Appointment and Procedures

So, the oncology appointment was overwhelming. Lots and lots and lots of info. ( see all the lots? A LOT! ) Basically it was just info. I still don't know a whole lot. Isn't that how it goes? The patient most always knows the least. Funny. Anywho, the doctor is great. He's so kind and caring. I am really blessed he's the one who'll be taking care of me.

So...today I got home from bible study and had messages from the doc's office saying they had times for the P.E.T scan and bone marrow biopsy I need to have done. She called twice. Twice. In the last message she said she really needed to hear back from me as these were the only dates open for over a week. She said the dr didn't want to wait, so I needed to call her back asap.

Ok, first of all. I really wish nurses or doctors wouldn't say certain things. Such as....'the dr didn't want to wait' to get these tests. Ahem. Do they not know that those things can set people off into another flurry of worry? ( I'm a poet and didn't know it ) Anyway...so now I'm like super worried. Not that I haven't been worried sick since I was diagnosed. Gah.

Lemme back up. So, after I met with the oncologist I had to go to the financial counselor since we don't have insurance. Luckily, the dr deemed the tests emergent, so I won't have to pay any money upfront. Which is good, because I have none to give them. Now let's hope I get approved and don't have to pay for all of these outrageously expensive procedures. I think if you get cancer, automatically you should get help from the state or something. I don't know. It just pisses me off that people with cancer not only have to worry about their disease, but if they can afford it! Seriously.

Oh, talked to the social worker too..she is going to send me out a ton of paperwork/info on resources. The American Cancer society called today, but I wasn't home..then I napped. I'll call tomorrow and see what help they offer. She says there are a lot of resources, which is good to know.

I also came home with a file box kind of thing, to help keep track of appointments, tests/procedures, medications, doctor's/nurse's phone numbers etc. That will help, I think. I certainly am going to have a lot to keep track of.

So, PET scan first thing, then bone marrow biopsy. I can't lie, I'm scared. I didn't sign up for any of this. Yet here I am going through it. It's unfair. Last couple of days have been really rough. Walking into the dr's office, seeing cancer patients. Hearing him talk about my cancer, and what the next steps. This is real folks. Really effen real. ( I so wanted to type the F word, but I'll refrain, you get the drift. ) I hope I'm strong enough for all of this. I'm not feeling very strong today.

First Oncology Appointment

This is just a pre-blog for the appointment. Just so ya know.

I'm scared..like sick to my stomach scared. Going to see an oncologist ( the big C ) Dr, makes this all so effen real. You know, this is NOT fair. At all, and I'm MAD about it. Mad at God, mad at the doctors, mad at everyone. I'm really mad at the people who I thought would support me, but aren't. I should have known better, really. Support really isn't their thing. If it's not about them, then forget about it. I'm just plain mad, damnit.

I don't know what to expect either. Which scares me as well. Not being in control, isn't my cuppa tea. I have to have control. But, I need to let God be in control. Man is that hard. But, I'm trying.

A friend from church is going with me tomorrow, so I'm a bit relieved. Or, a lot relieved.

Ok, I'm done rambling, if none of this makes sense, just ignore it, I won't be offended

Randomness

I love Jesus.

I love purple.

I'm scared shitless. ( I KNOW!! You're thinking.."She loves Jesus and she just said shit!" It's just a word people, and it 100 percent describes how scared I am.

Someone told me I talk too much about having cancer. ( Um, I don't know how NOT to talk about it. )

I don't know how I'd get through this without Jesus, my husband, or my church. ( all amazing )

I really don't know much about my cancer, because I'm scared to death to google it. ( I have found one blog about it, and she's so very inspirational. )

Oh, in my previous blog I said that people tell me " it's great news that it's treatable. But really, they just don't get it. It's cancer. It won't be easy." I didn't mean offense, but really no one does get it. You can't understand. I'm sorry if I sounded bitchy. It's just reality. I never got it either..til I got to wear this 'cancer hat'. Please know I so love all the encouragement..I'm just being real here..to get it all out. <3

I am tired all of the crackin' time. Always. Then I lay in bed so exhausted and can't sleep. It's so frustrating I could cry.

I have a lil dog Izzie, who sits under my chair outside to protect me of the evils of the world..like my husband. ha.

My first oncology appointment is Tuesday, and I am scared..well you got the idea above. I'm also going alone, my hubby has to work..and no one else is available to go with me. That scares me too. I don't want to miss something really important the DR. says, that another set of ears could hear. Ah well, such is life. Jesus will be with me.

I drink water all day long and it has to be ICE cold. Love water.

I'm in love with iced coffee. Sugar free vanilla iced coffees with a splenda and a little extra 1/2 and 1/2. If you want to get in my good graces..bring me one of those. I'll love you forever.

I got prayer from our personal prayer team yesterday morning and it was more than words can describe. I have yet to read the notes my friend ( who's on the prayer team ) jotted down for me. One thing I can say, is it's funny how God can bring something up that you really weren't aware of. He's really amazing. He is peace.

My nieces and nephews are the light of my life. Seriously they can make me smile no matter how I am feeling. Here are a few pics of them:

Alicia, Aliya and Avi.

Prettiest girls ever.

Nino/Antonio ( Don't let the smile fool you! )

Jeramyah and Elijah ( they're tough, can't ya tell?)

With that, I'll end my randomness.

Peace and blessings to you and yours.

The Phone Call

The call. The phone call. It changed my life forever.

So, my Dr ( ENT ) called me back ( finally! ) with the results. He said, "it is a cancer, it's called Hodgkin's lymphoma." I said "oh, it is." Trying so hard to keep it together. But I was crying, trying to hide it..but he heard it. He asked me to come in and talk to him in a couple days, so I could learn a little bit more, and he would set me up with the cancer people at UNMC. We hung up, and I lose it. Completely. I think I was crying 'OH MY GOD' over and over. I called my little sister, but couldn't even tell her, Shawn took the phone. Shawn also called Lynette ( pastor's wife ), I couldn't talk to her either.

( Writing about this is very hard, makes it really, really real. )

I told Shawn I needed to get air, so we went out back and sat, quietly. People were walking by, cars going fast on the interstate. The world just kept going on. Even though mine was falling apart.

It's been rough going since then. Obviously. Everyone keeps telling me it's great news that it's treatable. But really, they just don't get it. It's cancer. It won't be easy. I can't pretend it is. I know it won't be. I also can't keep trying to protect other people, by agreeing with them about it. For once in my life, it has to be about me. I mean, that's OK, right? It is the big C word, after all. I have to worry about me.

Life keeps going on. The people at church are an amazing support system, even though I didn't want to go this last Sunday, a couple days after I got the diagnosis. I knew I'd be bombarded with love and questions. Which is good, people mean well. Same with my bible study, I just didn't want to do it, and I even contemplated going to the Crying Babies Room and crying myself..maybe sleeping even. But I didn't. People want to love on me..and I need to let them. I'm def going to need it in the days and months to come. It's just a constant reminder, though. Which is tough, because all I want to do is forget.

The Beginning

One night, my neck swelled up. Within like an hour. Scared me to death, so we went to the Emergency Room. They said it was an infection in my saliva gland, prescribed me antibiotics and sent me home. No testing or anything. By Wednesday, it was the same if not worse, so back to the E.R. we went. The P.A. thought it could have been a stone in the gland, or an abscess and ordered a CT scan. He came in and said there was no abscess ( no mention of a tumor ), changed my antibiotic and made me promise I would go see the ENT ( ear, nose, throat ). So, I called on Thursday they got me in on Friday morning. The DR came in and proceeded to tell me it was a tumor, and wanted to get a biopsy. Biopsy. You hear that word and get tunnel vision. I really don't remember much of what he said after that. All I could think about was "I have a tumor. Oh my God, I have a tumor." So we made an appointment for a needle biopsy that following Monday. That was kind of painful. ( not to mention scary as hell ) But I got through that, and the test came back negative for cancer a few days later. But, I knew something just wasn't right.

The ENT wanted to wait a little while to see if it shrunk, so I went back a week later. It stayed the same, so he wanted to do surgery to remove the gland ( total parotidectomy ) and tumor. However, we don't have insurance, so I had to go through the process of financial aid. Sending all of our financial info in and then waiting. Oh, the waiting. Waiting is seriously worse than the condition, sometimes. Not knowing is the absolute worst. Someone else having control of your medical needs. So scary and unfair.

( Can I just say right here that it's just about waiting, waiting in the waiting room for an appointment, waiting for a nurse to call, waiting for financial aid to call..my life in their hands, essentially. Waiting. )

Finally! I got the call. 4 weeks later. F.o.u.r weeks. That's all. Eyeroll. But I got approved 100 percent, best news ever! I just so wanted this over. Two and a half weeks later was the surgery. I was scared to death. Surgery went well though, I didn't have a ton of pain like I expected. Oh, I was in pain..don't get me wrong..just wasn't as bad as I thought. What hurt worse was the bruised tailbone I got from being in surgery for 5 plus hours. My hands were also numb for a few days. I couldn't even get out of bed without help. I went home to recover ( had the best nurse ever, Shawn took great care of me )...and wait. Yes, the lovely waiting. Eleven days of waiting. Then, the doctor called me with the results...I wished he wouldn't have called.

( This all happened from February to around the middle of April )