Sunday, November 28, 2010

Scarlet Stars Christmas
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Wednesday, September 1, 2010

8 Week Follow Up

We saw Dr. Jackson today and got a great report. Everything looks fine. Rob will have another follow-up in 2 months. Dr. Jackson still rocks & even calmed my nerves :)

Tuesday, August 10, 2010

Week 4 Post-op

When I asked Rob what to write for today's update, I got a really, really long answer: "Tell them I'm o.k." So, there ya have it:) Seriously, today isn't one of his best days. Like any major surgery, this one is taking a good bit of time to recover from. For someone as active as Rob, this is a big adjustment, but he's doing remarkably well.

I had the day off, and we went to physical therapy, lunch, and to get Rob's haircut. Rob went to physical therapy today, because he has some weakness in his right arm/shoulder. Dr. Jackson had told us that this was possible/probable, and nothing to be alarmed about. We planned to stay at the salon for pedicures (yes, Rob gets pedicures occasionally),
but after waiting for about 30 minutes, Rob was done. So, we came home and both took a long nap instead!!! His feet aren't "sanded" (his term for the pedicure stuff) and my toenails don't have a fresh coat of Koala Beary, but we're rested.

We are hoping to go to Atlanta for a day or two this weekend, to celebrate Rob's birthday. We'll see how the rest of the week goes.

Well, I'll let you go now.............

Thursday, July 22, 2010

Leah Brinson and her precious family. Robby, Susan and Sarah

We've had so many people praying for us, and for that we are so grateful.Rob said: Why don't you post Leah's link on my blog, and ask them to pray for her, too. Rob wants to ask for prayers for Leah Brinson and her family. Leah is the daughter of Robby and Susan Brinson and sister of Sarah. She was diagnosed, yesterday, with AML, a type of leukemia. She was diagnosed and admitted yesterday to Egleston Children's Hospital in Atlanta. If I was understanding the last update, she will begin on chemo treatments tomorrow. Having just been through a cancer diagnosis with Rob, I cannot imagine the stress of finding out and then being admitted for major treatment to get underway the SAME day. No time to adjust to the fear, anger, disbelief. Not to mention, actually wrapping up things with your home and job prior to being gone for a month. Just a situation that's so incredibly stressful. You can follow her updates and find out what is going on, by visiting her care page @ http://www.carepages.com/carepages/followmytreatment

Wednesday, July 21, 2010

Whew! I'm behind:( July 28, 2010

Last Wednesday's post was titled something along the lines of "is it Wednesday"? It applies to today, too. Amazing how easy it is to lose track of the day/date when your routine is interrupted. I did figure out, late this afternoon, that it IS Wednesday.

Rob is doing so well. We met his co-workers a couple of days last week for lunch, and today he joined them for Johnny's pizza. Johnny's Pizza Wednesday......Kind of an office tradition. While at Johnny's last week, Dr. Jackson called to let us know that the lymph nodes were NEGATIVE. NO PERINEURAL OR PERIVASCULAR INVOLVEMENT. She did say that the thickest area of the tumor that was cancerous was 6mm. Anything greater than 4mm requires excision of lymph nodes for evaluation. So, he would still be facing the neck dissection later, if only the partial glossectomy had been done to just determine the lesion size. As it is now, NO additional treatment is required. We went back, yesterday, Tuesday, the 27th, for a 2 week follow up. He has a hematoma (small pooling of blood) at his incision site, which she drained. His scar is still completely numb, so he doesn't feel a thing when it's poked on. By last night, it was fuller again:( So, he went and had it drained/aspirated today. Less fluid, but still there. A concern with a large hematoma is infection/abscess formation. He started on antibiotics yesterday, and we are planning to have it evaluated again tomorrow. He also got some muscle relaxers that seem to completely knock him out, and ,in his words, make him cranky. Not sure how those are gonna work out.

Our friend/his co-worker, Steve, used to work as a physical therapy assistant for many years. He came over to pick Rob up for lunch and helped him with some strength and range-of-motion exercises. Rob is already moving his head/neck better.

Nothing about his case makes sense! Why Rob, at 37, would have this cancer. Why did he not need the skin graft or a tracheostomy? Why is he not still on a liquid diet? Why are the lymph nodes negative? God has a plan for Rob, and for me, too. Lots of people have commented about God's goodness, and his answering our prayers for healing. He is good, and he did answer our prayers. But, what about those whose prayers aren't answered with healing or a positive outcome? I'm not gonna lie. This is something I still struggle with. I may never understand it, but I'm going to share what I heard today. Sometimes God allows things in order to give us a witness, a "story" if you will. People respond to amazing, unbelievable, wild, scary, heroic stories. They just do, they're human. So, when we've lived through these experiences, we not only want to share, we HAVE to.

Throughout this whole process, I have been worried about Rob's suffering. I can't stand to see him in pain or sick, and since he's never sick, this was a really odd situation. I had so many thoughts. I imagined the best case and the worst case scenario, and everything in between. One thing I knew. If Rob "left", he would be in a better place. As a Christian, when this life ends, we have the hope of eternal life in heaven.

We have been amazed by the number of people who have reached out to us through this. I'm afraid I'll forget someone, but please know that we appreciate everything!

My brain is a little fried and overwhelmed. So, I'll let you go for now...............
The lymph node report is clean. No additional treatment needed.
christy jackson

At Home Relaxing

We got home yesterday around 12, It was great to be home. The Dog's were excited to see us. Christy's Mom and Step Mom were there to help Christy unpack the car(Thanks). I went straight to bed, and slept for a couple of hours. We just relaxed the rest of the day.

This morning Olivet Baptist Church came over and cut the grass. Thank you so much for that.

We are just waiting on the Lymph node Report. I know it is going to be clean. Just would like to be sure.

My next doctors appointment is July 27th (Tuesday) with Dr. Jackson. Just for a checkup.

Thanks for all the Prayers. Love You All
Rob & Christy

Tuesday, July 20, 2010

Getting my staples and drainage tube out. Almost done with this.
Rob Jackson

Monday, July 19, 2010

I am being discharged

I am being discharged.
We will be staying in Augusta tonight at a hotel probaly Qulity Inn (thanks MOM).
Going by in the morning to get staples removed from DR. Jacksons Office.
No word back on the Lymph Nodes Path report, maybe tomorrow.
Thanks MCG Health ENT Floor it has been Fun.
Great Nurses.
More later

Monday Morning

This morning I got my NG tube out. Haveing the tube prevented me from only drinking from a straw. Now, I will do better with my water consumption. I am still not very hungry I am working on a Ensure Plus today(I just drink a little all day). I have re-discoved Fruit Coctail I remember why I liked so many years ago. If you have not had some in while get some.
We are waiting on Dr. Jackson to come by. We do not know if she will have Lymph nodes results today or not. (I hope she does have it). Pretty sure I can go home today If I want to. The problem is she normal takes staples out at 10 Days. So we would have to drive back up to Augusta on the 23.

I have tube on the side of my neck that drains gross junk. It has started to drain more lately because I have been more active walking down the hall two times a day.(go me) We have got to figure out what to do with it let it drain till Friday or what.

So My prayers this afternoon are For God to give me a Lymph report and that it would be clean. What we need to do about driving back and forth to Augusta for drain and staple removal.

Thank You

This is Rob, I am going to give Christy a break from updating the blog. Christy has been a wonderful wife and friend to me over this week. She has been sleep deprived and had to watch her husband wake up every two minutes because he could not swallow without pain. I love you Christy Thank You so much for taking care of me.

There are so many people who called, facebooked, texted and prayed for me this week it was awesome. When I was feeling down or tired (Christy would say your Mom just call and wanted me to tell you she loved and was praying for you) again thank you for those upliftments(my word you can have it free of charge).

It would be difficult to thank everyone who has helped me.
So I will do it here.
THANK YOU SO MUCH.
I LOVE YOU ALL.

Sunday, July 18, 2010

Sunday Funday

They stopped Rob's tube feeding this morning. His appetite hasn't been good. Dr. Jackson says the lack of appetite is understandable, since he's getting a lot of his calories thru the NG tube. His JP drain, in his neck, is putting out more than yesterday, and it's also "thicker". She's not so thrilled about this, so he probably won't be losing the drain today. He is down to one IV site and they are only using it for antibiotics. So, when this bag of antibiotics is complete, we'll be able to walk the halls with NO IV POLES OR PUMPS!

He sat up and tinkered on the computer for a while this morning and then ate some lunch. He's now snoozing peacefully.

We still have not heard from the pathologist regarding the lymph nodes that were removed during surgery. Dr. J. had told us it would take a week, and it looks like it's going to. Please pray that ALL of the nodes will come back negative!!! That would mean Rob's treatment for this is over:)

I'll keep you updated as things change.

If you'd like to follow on Facebook, I'm listed as Christy Henderson Jackson and Rob is under Rob Jackson. I've done a pretty good job of giving little updates on my page. So, you wouldn't have to wait for me to remember to add to the blog. Yesterday, I was just so tired and fell asleep. Sorry for keeping you waiting:(

Well, I'll let you go now.......................

Friday, July 16, 2010

Rob has more energy!

Rob had a good day! He's had more energy, but has still slept A LOT. Also, he hasn't watched TV any, but did at least pick up his laptop for about 10 minutes today. He walked, ate a tiny cup of fruit cocktail, drank more water, took a shower (kinda). Doesn't sound like a lot, but it IS a lot for him right now. The speech pathologist came to see him and was pleased with his speech and swallowing abilities. He's having to make some minor adjustments to his eating pattern, such as drinking a swallow of water after every bite, but long-term he shouldn't have any problems. Right now, eating is painful, and he has no appetite. He had hoped this would be the "jumping off" point for losing some weight, and I think it will.

Ginger said we saw "a glimmer of the old Rob today." Especially, seeing him propped up with his laptop in his lap. She also noticed him using familiar facial expressions when trying to convince me that he would be FINE and I should go to the hotel to get some sleep. Ginger is planning to go home tomorrow, and I think we have the worst behind us. I certainly hope so!!!! Corinne, Ginger's 5 year-old daughter, said "I've almost forgotten how you look." We sent her a picture today, and her daddy, Jason, assured her that she would be sleeping in her own bed tomorrow night.

I've had several people offer to come and help, and I cannot thank you enough for the offers. If I see that I need ya'll, I will definitely call! It is comforting to know that I have a sweet first cousin, Micah, who lives here, and the friend who introduced me to Rob.....the ONE AND ONLY Susan Johnson Holstrom, lives very close! So, I have friends/family that can be here within minutes, rather than 2 hours like the majority of our friends and family. I also have the comfort of knowing that God is with me. He's been here from the very beginning and has walked with us through every step of this. I still don't understand why Rob had cancer, and I may never, but I know that God is with us. If you want to read about a real miracle, check the blog: finally settled in and good news.

When Dr. Lana "Legs" Jackson rounded today, she told Rob she plans to keep him until at least Monday. He's fine with that, and so am I. We are NOT looking forward to the 2 hour ride home.

Ginger is trying to go to sleep so she says: "Tell them they know enough now. They can get the rest tomorrow!"

So, bye:)

Thursday, July 15, 2010

Thursday

Well, we are still here at the Ritz MCG. The towels are rough, the TP is rough and the room is tiny! BUT, Rob is doing better. He's been up walking twice today, sat up for a couple of hours visiting with his dad and Laurie and is trying to drink more water. Still receiving all of his nutrients through his NG tube, but that's good, because he doesn't feel like eating.

Today was the first time he saw himself in a mirror. He asked, "Who's that man?" You wouldn't believe the swelling, but it has actually gone down a tiny bit today. He also said, "No wonder it hurts to swallow."

He did ask his nurse today who gets the bigger rooms across the hall, and he said those are reserved for patients who have "really big surgeries." WHEW! I'll take the tiny room. As uncomfortable as Rob has been, I cannot imagine how much worse it would have been with the graft and the bolster sewn to his tongue.

He has not used his morphine pump since this morning, it's still connected, but he's now getting Percocet through his NG tube. He's resting much better last night and today with the Percocet.

Dr. Jackson rounded while I was gone to nap. Rob wanted her to know that he's not in a hurry to go home, and Ginger said Dr. J. assured him that she's not in a hurry to get rid of him. She wants less and clearer output from the drain in his neck, before removing it. Also, she's going to have a speech pathologist evaluate him at some point, hopefully tomorrow.

My sister, Ginger, and my mom have been life savers. Mom went home today to keep Ginger's children, but Ginger is still here in Augusta. She is planning to stay as long as Rob and I do. Rob feels comfortable with her taking care of him during the day, so she does. I'm so happy to have her. Several years ago, when we were in Florida with my uncle, she took my phone and programmed her name as "Ginger the Great". Well, I've just left it that way, but this week it is SO true! We are so close in age (14 months apart) and so close emotionally, that it is awesome to have her here. Odd thing, we can fight like cats and dogs at times, but always end up apologizing and being as close as before. This dynamic kinda freaks Rob out, but I think it's just part of sisters being close. Also, fun that people think we're twins and get kind of confused:)

Thank you to the friends who have wanted to visit, but Rob just isn't up to it right now. Also, thanks to Laurie, Beth (my sister) and Rebecca for offering to come up and stay with Rob to allow me to rest.

Rob says, "Keep the prayers coming" and I agree. We've been amazed by the outpouring of love and the number of prayers being said on our behalf!

Hope to be reporting from the "home front" in a few days......Sunday? maybe.

Well, I'll let you go now..............

Wednesday, July 14, 2010

Is it Wednesday? .....1st post-op day

Rob is making good progress today. Now, good progress, in this case is very different from what Rob would normally consider a good day's work: Painting part of the house, mowing the lawn, raking, planting shrubs, building something! Today, progress is: sitting up in the chair for 30 minutes, eating a little Jello, drinking tea, and having one of the 5 indwelling tubes/catheters removed.

Dr. Jackson started his tube feeding today to make sure he has the nutrients he needs to begin to heal. He's tolerating this just fine, and hasn't had any nausea.

His neck is sore and incredibly swollen and bruised. He still has the morphine pump, which is keeping him as comfortable as is possible.

I'll try to update again later tonight.

Again, thank you for all of your prayers!

Tuesday, July 13, 2010

Finally, all settled in and GOOD news

What a long, long day. Rob's surgery went well. Actually, better than well! The initial plan was to do a skin graft which would have required removal of a piece of skin from his thigh, and sewing the graft and a bolster onto his tongue. When Dr. Jackson took the first piece, the margins were CLEAR. So, no need for a skin graft. Also, she had warned us that if the tongue swelled a lot, he would need a tracheostomy. His tongue is swollen, but not enough to interfere with his breathing, so no tracheostomy!

Since I tend to be a glass half empty kind of girl, I had assumed we'd be having all of the above. However, when I talked to Lamara (Rob's hygienist who found the lesion) she was thinking positively and discussed the possibility that maybe the lesion would end up being smaller than Dr. Jackson anticipated. She encouraged me to think positively and said she would continue to pray for us. That was the first time I actually thought "what if it goes BETTER than expected?"

HERE'S WHERE IT GETS INTERESTING.....Before Rob went back to surgery, I leaned over and whispered to him "Don't have a skin graft. O.K.?" He snickered, and we all kept going. They allowed Mrs. Peggy (his mom) and me to go back to the pre-op holding area with him. As we were walking away from his bed, I told him again, "OK, don't have a skin graft." He said he wasn't sure there was much he could do about that, but he'd try. I don't tell you all of this so you think I'm an awesome persuasionst, but to show you a concrete illustration of the power of prayer. So many people have, and were praying for him, and the outcome of his surgery was a miracle. My prayers were for his safety and for everyone involved in his care to have wisdom and be compassionate. When the nurse called to update and told me that they didn't have to do a graft, I was amazed! Excited, thankful, and amazed.

I can't tell you why he was blessed like this, or that the lymph nodes won't come back positive. If they do, we'll fight that battle then, but right now I (Rob's asleep) am thanking God for today's miracle.

Thank you for your prayers, calls, texts, e-mails and all of the love being sent our way!

In recovery

In recovery. Haven't seen Rob, yet. Dr. Jackson came out and discussed the surgery with us. No skin graft, removed nodes in neck with no trouble, will have NG (feeding) tube until tomorrow, ice/liquids tomorrow. Hopefully, less than 5 days here! Will update later.

update: tongue complete, beginning on neck

AMAZING! Nurse called from the O.R. Removed the lesion, got clear margins, DID NOT have to do a skin graft!!!! Starting on the lymph node removal. Will still be a couple of hours.

IN surgery right now

Rob is in surgery. They actually started the surgery around 12:15. It is a big surgery. I knew this, but when the anesthesiologist was talking about putting in an arterial line, it really hit me. The purpose of an art or A-line is to closely monitor vital signs. Working on the neck (to remove the nodes) puts them RIGHT beside the carotid artery and jugular veins, vessels you don't want to nick.

Rob's concern yesterday was "I wonder how I'll feel when I wake up." Please pray that he'll be comfortable and won't have ANY nausea. He'll have a morphine PCA pump. Hopefully, that will control his pain and help him sleep through a lot of the first couple of days.

Dr. Jackson is planning for us to be here for 5 days. She had previously mentioned 3-5, but today only said 5:(

Also, we won't have the pathology results for the lymph nodes and to determine the depth of the lesion today. They will do frozen sections to determine if the margins "edges" are clear.

The deciding factors for whether or not Rob has to do radiation treatments are:

If, more than 2 lymph nodes are positive (pathology will determine if there is any microscopic disease)

Lesion depth of greater than 4mm

Perineural or lymphovascular involvement

Dr. Jackson will come out and talk to us after surgery. So, I'll update later.
rob just went back to surgery about 11:30 expect surgery & recovery to be about 4 hours

Monday, July 12, 2010

preliminary surgery time: 10:30 a.m. tomorrow...
christy jackson

Leaving today, surgery tomorrow

Please pray that we'll both have peace today. We are packing and heading to Augusta this afternoon. Hoping to be able to pick up some books, etc. in the "bigger" city. Also, Rob is planning to pick something super yummy for dinner. He deserves it!!! He won't be able to eat for at least 5 days after surgery.

We are to go for pre-op tomorrow at 7:30 a.m., but don't know what time the actual surgery is. If I find out the specific time for surgery, I'll update the blog and my FB page today.

Thank you so much for your prayers, messages, and calls!

Well, I'll let you go now..............

Wednesday, July 7, 2010

First Hurdle Cleared

SUPER HUGE thanks to Renee Heath for making the calls today to clear up the insurance stuff. Aetna is going to "allow" Rob to have his surgery at an out of network facility and pay 80%!!! I was at the end of my (very short) rope, and she took care of it. Thank you God for sweet, caring, compassionate friends.

Thursday, July 1, 2010

CT CLEAR

Rob's CT did NOT show any enlarged/abnormal lymph nodes! He is scheduled for a partial glossectomy and removal of selective lymph nodes from the right side of his neck. The reason for removing the nodes, despite the negative CT, is to evaluate for microscopic malignant cells. His surgery is scheduled for July 13 and he will be in the hospital for a few days afterward. The plan is to remove the lesion on his tongue, and repair the area with a skin graft from his thigh. He will probably have an NG (nasogastric) tube because he won't be able to eat for 5 days. Radiation will depend on the depth of the lesion, which can only be determined during/after surgery, and whether there is any microscopic involvement of the lymph nodes.

He just finished his chest x-ray and its TIME TO EAT AND HAVE A DIET COKE!

Thank you for your prayers, and keep them coming!

I'll let ya go now.....................

Wednesday, June 30, 2010

Here in Augusta

Well, here we are in Augusta.....again. We have an appointment at 8:00 a.m. tomorrow with the tumor board. When they called to confirm the appointment, well, I missed the call and said my 2nd bad word of the day, but I digress. The lady told me that as long as Rob doesn't eat or drink in the morning, they should be able to do a CT tomorrow. Also, if they do a CT tomorrow, they can do what she called a "wet read" and give preliminary results. Sounds like we should have a much better idea of what's going on tomorrow. I'm nervous, and Rob is.....well, Rob:) He's just anxious to get started and GET FINISHED! He's a busy, busy man. No time for this foolishness!

Keep us in your prayers.

Well, I'll let you go now...............

Monday, June 28, 2010

Stitches Out!

We followed up with the oral pathologist at MCG today. Rob had stitches from his biopsy that had to be removed, and the pathologist discussed his biopsy findings (in depth) with us.

Lots of tumors are staged with the TNM system. Tumor (size of tumor), Nodes (different designations determined by what nodes are involved and where they are), Metastasis (are there any distant metastasis sites). That's probably not the most technical description, but you get the idea. Anyhow, the "T" is the only part we know right now, and Rob's lesion is a "T1". This means the lesion is less than 2 cm in size! That's a GREAT thing.

After we see the tumor board on Thursday, we should know when additional tests will be done. Specifically, tests to determine if any nodes are involved.

There's no question that the remainder of the lesion has to be removed. The procedure to do this is called a partial glossectomy. In layman's terms: removal of part of the tongue.

Rob's plan is to "have the lesion removed, maybe have a little radiation and be done!" If you know Rob, he has an amazing faith in God, and a remarkably optimistic outlook on everything:) Two characteristics that are amazingly beneficial all of the time, but especially now.

You know how when you're on the phone and you need to get off for something important like going to the bathroom or catching a show on TV you always say: "Well, I'll let you go now......." That's kinda how blogging feels. You dump out the facts and think, "hmmm.....how do I end this?" So, I think I'll end with this. Please keep us in your prayers!!!

I'll let you go now...............

Friday, June 25, 2010

the situation

Rob asked me to start this blog so that his friends and family will have a way to keep up with what’s going on. I don’t know what I would have called this post, but Rob chose “the situation”. I’m not gonna lie, I would probably have used a string of 4 letter words with a generous dose of tears mixed in. So, we went with Rob’s idea:)

On Wednesday, we found out that Rob has squamous cell carcinoma on his tongue. We don’t know much right now. No idea the extent of the disease or the treatment options.

We are going to the Medical College of Georgia on Thursday, July 1st, to meet with the “tumor board”. Rob will be seen by an ENT surgical oncologist, radiologist, pathologist and hematologist. After they see Rob, the 4 of them will meet to discuss Rob’s case. A couple of hours later, we will meet with this team to discuss Rob’s treatment plan.

Please keep us in your prayers. Rob is hoping that this will be a VERY short blog with an awesome ending!