Wednesday, September 26, 2012

Pink Ribbons Post, God Appointed Doctors

Okay we loved the oncologist. I'm to call him Dr. Joe. He's 60 something, and his wife is an oncologist as well. His wife is Dr. Mary because it was too confusing to have two Dr. Muscatos in the same practice.   I will also add to his bio that he's been voted DOCTOR of the YEAR multiple years now.  My sister tells me he's been awarded 2010 as well.

Joseph J. Muscato, M.D., FACP

Primary Location:

Missouri Cancer Associates
Other Locations:
George Rea Cancer Treatment Center

Robin is his nurse. She's a cute spunky woman 40 or so. She told me I will never have to suffer through anything. If a med they give me doesn't help my side effects, they will move on to the next. I'm to call them even at 2 am. She said the horror stories of vomiting the gum you swallowed in second grade...doesn't happen if I take the meds and communicate my needs and side effects to them.

I only have breast cancer and two lymph nodes. No other place in my body lit up with cancer per pet scan.

Ct scan showed something on my spleen but it's not cancer. So I will have them find out if it’s something else that needs to be removed. 

I start with chemo, 12 weeks of it. Every third week, I will have a dose of chemo on the Friday at the end of the week. 1st week is worse. 2nd week is better but I have to avoid people and crowds or wear a mask. Hmmm... yeah that doesn't screech "look at me! at all." The 3rd week I will feel more like myself and may be able to visit mom. He told me I will not be able to go to moms and clean her house from end to end. We won't have marathon shopping trips. But I can spend quiet days enjoying her company. I was afraid I'd not be able to spend time until this was over.

Then it all starts over. I am choosing Friday for my chemo day. And it will take all day to get the chemo. KJ will be coming with me.  Then he will be home with me on Sat and Sunday, which they tell me will be the roughest days.  The drugs I will be given will cause hair loss...nausea...lack of appetite...diarrhea and crushing fatigue. Dr. Joe told me, I will feel like a Mac truck fell on me and I will be content to leave it there. :) Lovely. I have to take a chemo class and be tested on my knowledge before I can start. But it should start in the next two weeks.

I will have three, possibly four surgeries. The first one should be this week.  I have awful veins for starting IV's so I'm having a port installed.  (Sounds like a car part doesn't it?)  Probably next Thurs. but I gotta call Monday morning and confirm. Then I will have the mastectomy. I want an immediate reconstruct and Doc Joe said I could, but it will be up to the plastic surgeon whether he does it in the same surgery as mastectomy. I have to have an axillary dissection because of the involved lymph nodes and sometimes plastic surgeons are hesitant to do reconstruction with all that on the same day. I hope he will. We are also doing a complete hysterectomy, ovaries and all at some point. The gyn will NOT do that the same day as the mastectomy. I would rather have ONE massive surgery and recover at once. 

So much for quick hmmm? All copays have to be paid in full before the hospital will schedule that surgery. So now I get to experience the financial stress of cancer as well.

I may have to have radiation, but maybe not. It will depend on how many lymph nodes have cancer. They believe there are three but they are not grossly abnormal. He said the axillary felt normal but we know it is not, because of the biopsy.

The best information that Dr. Joe gave me in this visit was a very simple statement.  "There is no wrong way to do cancer.  You get through it however you find a way."  I would recall this statement over and over as people fell over themselves trying to tell me how "to do cancer."  You have to "stay positive"..."rebuke the cancer"..."eat lots of blueberries"..."stop using artificial sweeteners"..."you must rejoice in adversity"..."pray your way through"..."journal your journey"...  It was exhausting to feel like you had to do cancer the way that made THEM feel better.

I told him that I had been upset that I should have gotten the mammy in Jan and didn't cause of Mom's diagnosis. Then in May I was to have it scheduled, but there was a scheduling conflict with the hospital and then I forgot. So I was late getting my mammy.  He told me. "Tina, this cancer is very hard to detect by mammogram. Usually its because of some physical change..pain in the breast, the nipple retracts, a dip or dimple appears or suddenly the breast looks larger than normal. Your cancer showed up on mammy extremely early for lobular cancer and I doubt it would have shown up even in May. He said "You had the good fortune to schedule this mammy on a day the cancer decided to show up. I can't explain how it showed up even now."


Okay WHO do you think really scheduled this mammy EVEN if it was on my wedding anniversary? It was not just Good Timing. It was God timing! I could have gone another year thinking I had a clear mammy while this kept growing. I've had THIS cancer an estimated 2 years now and I had no clue!! 

Oh.  Did I mention the Radiology doc was not correct.  I have Lobular cancer, the same kind as moms.  :(  I learned that lobular cancer doesn't lump up.  It SPREADS out and adds bulk.  It is harder to feel.  Isn't that special?  All these years of doing self exams looking for a cancer lump and I get the kind that doesn't lump.  The descriptions Dr. Joe gave is why most Lobular cancer is detected.  Sudden changes in size, heft, shape or skin texture are signs of Lobular cancer.  So last Spring when I asked KJ how long had righty been larger than was the signs of cancer and I did not know that.

Sally:  Well as awful as this is, I am so relieved and thankful.  So glad you don't have cancer anywhere else and getting the hysterectomy should take care of the family history of Ov. Cancer, right???   So glad you don't have that!  I was so afraid your pet scan would be lit up, too.  That is amazing that they discovered your cancer.  Yay God!!!!!!!!!!!!!!!! I'll be praying the chemo isn't as bad as it could be.  I'm glad KJ will be able to help you on the hardest days.  I wish we could all come down and help you out!!

Danica:  Yeah what Sally said...when you are feeling up to it ms. Rosey.   I expect you to write a book on this whole experience. i'm serious. You have an amazing ability to take someone right to that moment. butt cheek word! Coffee flew onto the screen!  i too wish were there to help you in a physical way. know we are praying for you!!! :)

Paula:  Praise God for exposing the cancer "at the right time".  Yet another sign that God is in control.  {{Tina}} Take care of your "cheek boogying" self.  

Linder: Exactly what Sally and Danica said. I fully expect you to write a book, too. You've just added a new phrase to my repertoire: "butt cheek boogie." I laughed so hard that I cried. I had to stop reading for awhile because I couldn't see to read the rest of the post.  Someone from my church is a breast cancer survivor. She's a funny lady, too. The title of her book is Lessons from a Bald Chick. I wish like anything that I could afford to buy it for you. But you could write a book yourself. It would help others that will come after you through this journey

Maryland Crab:  Another godincidence!  I'm glad you got through it, I hate those mri machines, I nearly had a complete meltdown when I had to get one, I thought if I weighed 5 more pounds I wouldn't fit.

I'm so glad you're having compassionate care throughout all of this.  12 weeks.  Well, certainly no picnic, but that means how many times, 4?

Okay, line out the time table, are you getting the surgeries while going through chemo?  It's the port install first, then your first chemo friday... then what?

Still praying.

Rosey:  No surgeries during chemo. In fact if I had not had the arm pit involvement of lymph nodes, they would have done surgery first and then radiation.  Incisions don't heal during chemo and they want to attack any cancer cells that might be loose before they can land anywhere. It’s unlikely that I have circulating cells because even though the biopsy was positive in the sentinel lobe - the lymph nodes are not hugely enlarged. They are "upper limits of normal". So Doc Joe doesn't think it's been there long. Yes...four courses or approximately 3 months of chemo. Then I have to wait til my blood levels are normal. When my blood tests show I'm no longer radioactive they can move to the mastectomy.

It gets trickier here. If I'm still relatively healthy and if the main surgeon and the cosmetic surgeon will play nice, I might be able to have the mastectomy and the reconstruction at the same time. I guess there are territory issues here. The gyn and the other surgeons apparently do not play well together. I asked about one massive surgery and he raised his eyebrows. Have I told you this or was it my sister? He said that would be a horrendous surgery and recovery. I told him yes...but it was ONE horrendous surgery and recovery. Instead of three. It was like the difference between bobbing a dogs tail all at once or doing it inch by inch. ouch

He told me IF I found three surgeons working together we could discuss it. And we had 5 - 6 months to find some. But that I should keep in mind that I could be talking 3 surgeries each one 6 weeks apart.

Does that make you feel tired?  My last chemo SHOULD be early November. If I have to wait a month for the blood to clean up...I have to decide if I want surgery right before Christmas and have to recover through the holidays OR wait til early Jan for the chop and shop.

Dr. Joe's wife Mary, (Dr. Mary) was diagnosed with breast cancer last year.  (2009)  She had a mastectomy with chemo as well.  So he knows Breast cancer from the clinical perspective and as a husband. He related so well with Keljames too.

Fighting Cancer gets easier 
when you trust your doctors

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