Chemo?

Last week we went down to see the team of doctors. First was the surgeon. He said everything looked great!  He had gotten 100% of tumor! Now we were off to see the Doctor that would do the Radiation. So far so good, but wait...   Radiation will take 6 to 7 weeks, every weekday for about 30 min. Risks are eye damage, blindness, brain damage, salivary gland damage, pituitary damage....   ug.  AND THEN he said, Oh and with your type of cancer I have spoken with my colleague, and we believe you should have Chemo with the radiation, you will meet with the chemotherapy doctor next.  Wait What? This is the very first time we had heard anything about chemo, we were certainly not prepared for that.  SO completely dazed we walked next door to the "other" doctors office.  We spend another couple of hours talking to her.  Seven PM we got in our car to drive the hour and a half home....    I asked Mr. X how he felt.  He said:  "Like I've been kicked in the nutz".  Funny thing was..... so did I.

University Medical Center, University of Arizona, Tucson.

OK....  Huge thank yous to UMC Tucson.  This is where my husband is being treated.  The Dr. that my husband is seeing has probably seen more SNUC than any other Dr in the US (maybe the world), and he has only ever treated 7 cases. I cannot say enuf good things about Dr. Chiu and his team.  I am probably giving away who we are but I just need to say how wonderful these people have been. Dr. Chiu obviously knows quite a bit about this cancer and what the best approach to treatment is.  The neurosurgeon that performed the brain portion of the surgery was Dr. Michael Lemole who is the same neurosurgeon who performed Gabbie Gifford's surgeries. Amazing group of doctors. We will be traveling to Tucson to meet with the Radiologist, Dr. Chui, and a social worker some time this coming week.  Radiation will begin around the second week in August and will be everyday for 6 weeks.  It will be difficult maintaining 2 homes financially and logistically but these are the best guys in the world and I would not go anywhere else. We will not be in town for my 2 children's birthdays, or when they start school. Thank god that I have a wonderful group of family and friends to call upon to help.  I think today must be gratitude day, because I feel very grateful for what we have and where we are with this devastating disease.

Where does the Time Go?

The surgery went great and Mr. X was in the hospital 5 days.  Next we meet with the Radiologist and a Social Worker, because the radiation is not in our city and we will need a place to stay.  I am exhausted and cannot keep up with time. Today my back is spasming so bad that I could not go to work.  The stress of all of this is really affecting my body...  everyone tells me "take care of yourself or you will be of no use to him!"  Sound good... but how do you do it?

Surgery Day

Well here we sit in the waiting room. Surgery started about an hour ago, and the doctors said it could be 4 to 6 hours.  Have Mr. X's Family here with me. We are all anxious and nervous. The doctors said he will  be in the ICU after the surgery, and over night. One doctor says he will be in the hospital 3 to 5 days, and the other doctor said 5 to 7 days. So I guess he will be here 3 to 7 days. My fingers are just too nervous to type anymore.

Coincidence?

Ya know,  something has been bothering me.  It actually started before we had the SNUC diagnosis.  Last April my brother died from complications of a brain tumor.  He had a tumor on his brain. It was on his frontal lobe between his ear and the center line at his nose on the left hand side.  This is exactly where my husbands SNUC is. On the left maxillary sinus. Now what started me thinking about this is that my brother and my husband were the very first people I knew who got cell phones.  I mean literally, i thought they both were kinda cool with those big huge brick phones. They both have careers that keep those phones up to the sides of their heads 24/7.  Could there be a connection? What are the chances that my only brother and my only husband have tumors in the very same spot?  Really?

SNUC is very rare. From the reading I have done, only 100 cases have ever been recorded.  Our surgeon told us in 8 years of practice he has done 50 sinus surgeries a year, but has only seen 7 cases of SNUC, But I see several pages like mine.  Is this cancer becoming more frequent?  Could cell phones be the cause of the increase in cases?

The surgery is in 2 days. We are anxious to get the surgery over. Its all stepping stones. 1) Surgery  2)  Radiation....   Its a journey of one step at a time.  I don't think I made that up. I must have read it some where on the world wide inter-web.

Dos and Don'ts When Talking to Some One Like Me. *RANT WARNING*

OK,  I know that you are uncomfortable talking about Cancer with me. You may not know what to say. Here are some helpful tips: 

Don't Say; "I KNOW everything will be OK".  You don't know that, and it doesn't help me unless you have MD after your name or are a world renowned psychic. Don't say: "I know how you feel, my grandmother had cancer".  Well, I'm sorry that your grandmother had cancer... Did you sleep with her for 23 years? Was she your best friend? Did you guys role play bad boy and the boss lady?  No? Well then maybe you don't really know how I feel.

Now for some things that Do work.  First, if you are uncomfortable saying anything... don't, you really don't need to say anything at all. I don't need you to tell me how bad you feel...  that is kinda understood.  Of course you feel bad.. unless you are a dick. Good things to say are:  "You are in my prayers..."  Now, that does not even need to be true. say it anyhow..  it feels good to hear. That means that you really care. Prayers are very personal, and if you are willing to add me.... that means alot. 

Hugs.  Hugs are generally good, but BEWARE... Hugs can cause tears.  Make sure if you hug you are ready for the potential of tears.

Generally, just please keep in mind...  this is the biggest baddest thing that has ever happened to me. Unless you can really relate, please don't try to. The best thing you can do is just be there and listen... 

Wow.. Google is very scary

So, I have not done too much research up to this point. I know this type of Cancer is very rare, and anything I find might not explain our situation at all. X, on the other hand has read everything. Everything everything everything on the web about SNUC, which many of the sites are "In Memory of" sites. He tells me he is just being informed to make the right decisions about the types of care we need to consider in addition to what the doctors recommend. So last night I started to Google SNUC... I found a very good survivors web site; Cancer Compass has a very good message board where sufferers and survivors are talking about the cancer and their experiences. What a huge help this has been. I became a member of the site yesterday.

4 days from now is the surgery.