Life Came At Me Fast

Friends, Romans and countrymen -

Great, Great news! The scan which concerned one of my doctors to the point he suggested cancer might have returned was looked at a second time. My surgeon (Dr K) and one of his associates specializing in such scans determined I DO NOT have recurrent cancer. The reason the first physician thought I might have recurrent cancer was because the extent of my surgery is severe, therefore presenting more than usual swelling and scarring. The surgeon who actually worked on me, and therefore has exact knowledge of the area in question, along with the specialist knew better. A visit to Dr K today confirmed this wonderful news!

I've said it before and I'll say it again: Dumb but lucky!

For anyone who has wanted to post a comment:
It is easier now! You do not need to sign up for an account and all you do is click on the "Comments" at the bottom of each posting and you can post a comment. After you post your comment if you could put your initials, just so R knows who you are.
Thanks, J

Hello all!

Here are some photos of the golf outing R helped to put together (she is pictured with me in one of the the above photos, wearing the orange blouse). R sold mulligans to all of the golfers for $5 each. The money she raised was donated to my family! Wasn't that thoughtful? R is not done. She is organizing a raffle at work with a new set of clubs as the grand prize!

Also, you can mark this up as a random act of human kindness: one of the female golfers, EG, won a cash prize because she did so well. EG stopped by our table and dropped her cash prize down, stating "I want to donate this to your family". Amazing! Thanks, EG, for such a selfless gesture.

"Thank you's" go out to every single person who bought a mulligan, donated cash or put forth effort in organizing such a wonderful gesture of kindness. Bless you all.

Hello all –

This is one of those posts which are not fun. J and I now wait for Monday for a consult with Dr. K (one of my surgeons). Dr. K and a neuroradiologist are going to make heads or tails of an MRI I had only a few days ago. It seems the MRI was 1st read by a radiologist who feels there is a possibility of recurrent disease, meaning my cancer could be back already. There is plenty if medical-ese I could throw out, but the net sum is we are waiting for neuroradiologist and my surgeon(not someone who has never met me) to read the film and let us know.

If there is recurrent disease, the potential impact is serious. My chemo and radiation, which is yet to be undertaken, will be significantly higher doses. This increase in radiation creates more “scatter” which is radiation bouncing off its intended target into friendly organs. Also, the area which must be treated is very close to my optic nerve. In my case, my RIGHT eye nerve could be in jeopardy, potentially blinding me.

J and I are not new to this emotion or state of mind. Since I have been diagnosed with cancer, much of our time is spent in a hurry-up-and-wait mode. We wait for test results and wait for opinions. We wait for treatment to start or for the weekend to expire so we can see the doctor. This is life. It came at us fast! (Sorry – I could not pass that up).

Here is some good news to hang our hats on: only two weeks ago I had another PET scan (a cancer specific scan) which came back clean. Is it possible to have recurrent disease only two weeks later? We will soon see. Also, the area which could have the recurrent disease is the very same area the surgeons hacked up. Is the ‘recurrent disease’ merely my own scar tissue? Again, we will see.

My surgeon will read the films with an associate who specializes in head and neck post surgical reads, so we certainly have the right guys on the case. Would you believe they have a specialist in that?

I also want to give special mention to my associates from work, RM, KH and BF. These kind souls are responsible for a fundraiser/company golf outing! Proceeds from the sale of mulligans will go to my family to help with our medical expenses. Thanks RM and KH for putting together the fundraiser mulligan sale. Thanks BF for making it all possible. God bless. J, S and I will definitely be at the 19th hole to meet and greet.

I’m posting some photos which just became available. They are of me just out of surgery, so I look pretty beat up! J and I marvel at the progress I have made only five weeks out of surgery! I assure you all, I look and feel much better than these photos suggest. One is a close up of me. One is a shot of dad looking over me and the other is an exterior shot of the Mayo Clinic (where my procedure was done).

In other news…

Big day today! We found out a THIRD opinion of the type of tumor (cancer) I have. If we’re looking for a bright side, we’ve found it: I have Poorly Differentiated Squamous Cell Carcinoma (ethmoid sinus tumor) instead of Sino-Nasal Undifferentiated Carcinoma. That is a mouthful, but the Squamous cell, as bad as it is, is not as bad as the latter of the two. J told me the survival rate for SNUC (the one I don’t have) is five years (yikes!) She hasn’t told me for the cancer I have, and I’m not asking. Ignorance is bliss.

I also went to the dentist today. I did go to a different dentist only weeks ago, but for some reason, he did not prepare fluoride trays for me which my radiation doctor insists I’ll need. The new dentist prepared them gladly, and also found a couple of small cavities the last guy missed. I was a little perturbed that some cavities were missed, but the new dentist explained the technology he uses is absolutely the latest stuff you can get anywhere, so unless our last dentist had it all, he would have certainly missed my tiny cavities. I guess he is right, because I’ve never seen an office or technology like was used on me today (a plasma screen TV while I’m waiting in the chair – neat!). The dentist actually did all of the work on me and took time to talk to me and J. I would recommend him to anyone in the greater Phoenix Valley. ALSO this dentist is somewhat of an expert on the effect radiation therapy has on teeth (it is significant). Not every dentist knows the severity of the impact this treatment will have, and my new dentist is an expert on this matter.

After J and I went to the dentist, we went to the grocery. I walked around all day without my cane, and the pain is not so bad. Maybe I’m getting better!


See you all next time!

This is J here updating blog for R. R met with the medical oncologist and the radiation oncologist this week. I'll start with the med. oncologist first. R will have chemo 3 times during radiation (the 1st, 23rd, and 44th day of radiation). The side effects are nausea, possible hair loss and MORE NEUROPATHY. The chemo may cause the neuropathy in his right leg/foot to get worse and/or neuropathy in his left foot.
Dr. K (med oncologist) will help control the nausea. He also took R off the Neurontin and put him on Lyrica for neuropathy. Dr. K thinks this medication works better for neuropathy-who knows. It is a newer medication and a lot of his patients have had good results with this. We will see.

The meeting with the radiaiton oncologist went well until R had to get his mask made. This is the mask he will wear every treatment of radiation. He had a wet mask put over his face and upper torso and bolted to the table, so he cannot move at all. The mask hardens and molds to his face as he lays there for an hour. His hands were tied to his feet and a tongue depressor was stuck through the mesh mask and in his mouth the whole time. Then he was placed in a CT machine. He was in for about an hour- he started to panic at the end and had to ask to get out.
We found out about the side effects of radiation. The temporary side effects that will last about 7 weeks are tiredness, dry mouth, trouble swallowing, loss of salivary glands, loss of hair (2spots in back of head and on the left side by the ear), redness to the skin and peeling, taste will be effected and a metallic taste in mouth. This will also effect the upper jaw and R will need frequent fouride treatments from his dentist.
The long term (perminant) effects will be loss of salivary glands on the left side, hearing deficit on left side, and slight brain defecit (nothing noticeable), TMJ and taste will be less.

Under the not likely, but could happen category is vision problems/loss of vision in the right eye (if vision is effected-he will not know for 4-5 yrs), may get some radiaiton scatter which could effect the lens of the right eye and cause a cataract later, the free-flap over the eye could fail (meaning more surgery). Radiaiton could kill the flap! REMEMBER-NOT LIKELY TO HAPPEN.

The radiaiton will focus a lot on the brain-they are concerned that if any cancer is left-it would be there because the tumor passed through the dura.
The radiaiton will be 5 days a week for about 7 weeks.

The chemo he will get is called Cisplatin.

We do not have a start date yet. We will meet with both doctors the begining of next week (the 14-15th) and finalize these plans and make any adjustments to the mask. May start by the end of next week. We will have a chemo counseling session next week as well. This will also allow another week for R to heal a little more.

R got to enjoy a massage last night from a friend who is a massage therapist, which felt great! Thanks L.

R has his very own TENS unit know. This does seem to help him.
Thanks for all the cards, calls, emails and special care pkgs.

Hello all -

Saturday here and I wanted to take a minute to update the blog and say hello. My foot pain is subsiding a little (at least this very moment it is). The pain comes in waves. It either throbs badly or it hurts very little, depending on what I don't know. I've increased my medicines (doctors orders) from 300 mg to 600 mg a day so perhaps this is helping.

Also, during my last physical therapy session, I tried an electrical stimulation treatment called "T.E.N." I don't know what it stands for, but it has something to do with Trans Epidural something. The machine is strapped to those painful areas (my foot for example), and a small electrical charge is then turned on. It is just barely enough to feel a tingle, so it is not so bad. The theory is that our sensory nerves can feel only one kind of feeling at any given time. If you feel pain, tickle, shock or whatever, you will feel only one sensation at any given time. The electical tingle trumped the pain I had been feeling in my foot, so in a way I was pain free during the treatment, as well as a good bit afterward. The therapist said there are home versions of the machine, and they are not so expensive. Also, the T.E.N. machine can also perform a completely different thereapy using a low frequency output. The theory on this is the machine stimulates our bodies' release of endorphines (a natural pain killer). I haven't tried this second treatment yet, but who knows?

Today, not much has changed. R is still in pain and discomfort with foot. Also, he is having headaches again (hasn't had them since before surgery). Took oxycodone for pain. Tomorrow is the PET scan. I spent the day talking to Dr's about the pain he is having and the new post surgery onset of headaches. Dr Z's office (the neurosurgeon) says post-op headaches are normal and to monitor them. We just need to watch for meningitis, signs of this will be: increase HA's and/or mental changes and/or, fever. R is not having any of these other symptoms, just headaches for 3 days. We will continue to keep blog updated. J