If there's anyone still out there getting notified, I will be logging on to update the journal. Stay tuned...
Hello to all who are still hanging with us on this journey. I apologize for not writing for the last three months but there really wasn't much to say. The progress comes in such small steps.
Paul had another CT Scan on June 25th. We just found out the results on Thursday, July 5th. As of now, there is no evidence of cancer. The scan goes from his throat to his pelvis. Dr Bhandari would like it if he could have a CT Scan once a month. Unfortunately, we can not since the insurance bills us $500 for each one. Therefore, Dr Bhandari says we can have a chest x-ray for three months and we can get the CT Scan every fourth month. The insurance completely covers the x-rays.
He still needs to have bloodwork once a month.
If you'll recall in my last posting back in April, Dr Blanco wanted to take Paul's feeding tube out. Needless to say that didn't happen. The eating is going to take a long time. But he is making progress. It has to be when the phlegm is not overpowering. We're still limited to once a day for now. But I try to make him something to eat almost every day. Soft scrambled eggs and mashed potatoes, turnips, parsnips & carrots with gravy are still the best so far. They are also his favorites! Grits do ok and I bought some cream of wheats to try as well. It's all about the consistency. Too watery or thick will choke him. He's only able to take about 3oz at one sitting. It also requires him to drink water to continue to help him "wash" it down. That can be anywhere from 3-6oz. When he's done with that he looks like he just ran a marathon. It's quite a job!!
He is completely off hydration. That occured at the end of April. He has to drink at least 30 oz of liquids a day. He does a pretty good job. Snapple green tea, water and gatorade are his drinks of choice
He is going to try going back to work three days week, 6 hours a day starting on July 18th.
We have found a new ENT, Dr Pacheco in Annapolis, and will be seeing him on July 16th. That way we don't have to travel to Baltimore to see Dr Blanco so much. Dr Bhandari highly recommends him. The nice thing is that he's in the same building.
Well that's the latest for now.
It's hard to believe that's its been over three weeks since I last posted! Unfortunately there wasn't much to update during that time. Paul's progress has been quite slow but steady. It has been positive with no relapses. Such a good thing!!
But now we have some updates to share. Paul had another Modified Barium Swallow Study done this afternoon. It was very successful. It showed no strictures of the esophagus. He does not need any dilations at this time. He aspirates a very small amount occasionally so he has to continuously "clear" his throat. The part of his throat that is responsible to completely close off his wind pipe is still considered a little bit "lazy". It doesn't completely close at times or pulls back too soon when his swallow is not completed. Then it allows some liquids to go down the wrong pipe! His constant throat clearing helps to keep liquids and food moving in the right direction. He will probably have to do this the rest of his life.
We also had an appointment with Dr Blanco at GBMC in Towson. He explained to us why Paul may still need to have more chemo in the future. It's because he has metastatic cancer of the lung. It could possibly come back and is not always visable with CT Scans or Pet Scans. The monthly blood tests will help to keep check on it as well. He will have to be monitored very closely for some time before the oncologist feels comfortable saying it's in remission.
We were also suppose to have an appointment with Jaclyn, his swallow therapist. Unfortunately, our insurance with Kaiser will not approve any more sessions. It is being appealed but we don't feel very confident since other appeals in the past for other matters have always failed. We will have to work on our own to do mouth/throat exercises. She said she will work with me via email for recommendations and advise that Paul can work on.
We also have an appointment with Dr Blanco for June 14th. That is the day Dr Blanco wants to do the removal of Paul's peg tube (g-tube). Needless to say, he has alot of hard work ahead of him if he's gonna be able to be eating on his own by then. The two months doesn't seem to be alot of time to me for all of this to happen. We will see :-) It will be a joyous day if it does!!
As for Paul's energy, it is baby steps every day. He tires so easily and quickly right now. But he has managed to cut the lawn. It's usually a two day process with lots of breaks and maybe a nap or two. But it gets done and that's what counts.
I think I've hit on all points that needed updating. If not, ask and I shall update :-)
Time for me to go watch "Swamp People" on the history channel......
We're back from the beach. Got back last night. The weather was not all that. If you were 20 miles from the ocean, it was warm and balmy. If you were next to the ocean, like we were, it was COLD and foggy all day. The air over the cold ocean water and the sun's inability to burn it off left it very breezy and chilly.
Paul didn't feel the best the entire time. He only got to walk on the boardwalk once. But he still enjoyed the salt air and change of scenery.
Paul had his follow up appt with Dr Bhandari this morning at 11am. His bloodwork with CBC results were good. Therefore, Dr Bhandari says Paul can hold off the chemo for another two months. He will be reevaluated in May.
He was weighed today and he now weighs in at 170lbs!! Since he hasn't been very active, I have to start cutting back on his high calorie diet!! Another sign, I think that he's getting better and the cancer is gone!! It's not eating him up like it did in the beginning.
We are anxious to get back to some serious swallowing. He really wants to start trying to eat again as well. We will be contacting Jaclyn at GBMC in Towson to get him back on the schedule.
Here it is, the eve of the eve before we leave for the beach! We are both very anxious to go. Paul's time off without chemo is definately helping him. He has regained a little bit of strength but not as much as he would like. He is more alert now and slowly shows his sense of humor. The only real bad side effect left from the chemo right now is his finger nails have turn red with blotches. His finger tips are very sensitive.
I am packing and getting ready to leave for Ocean City on Thursday morning. We will have to take a detour before we can officially get on the road. We have to stop at Dr Bhandari's office so they can change his port line.
We plan on coming back Monday afternoon. The weather is suppose to be nice the entire time. He is really looking forward to this.
Barbara: We will pray for Tim to have a safe trip to Alaska. Then for his new job to work out for him so he can bring his family up. I can not imagine how difficult it will be seeing leave for three months!! Hang in there....you can come down and help me paint furniture real soon :-)
Jayne: You and your parents are in our prayers. I am sure it's been such a strain on you. Please get rest....we need you in Maryland :-) this summer!!
The results of Paul's CT/Scan does not show any cancer. He was scanned from his neck to his thighs. However, (we are beginning to dislike that word) this doesn't mean he will not have to have anymore chemo. He has been given a month off from chemo therapy so he can regain some strength and will.
We have an appointment with Dr Bhandari on March 20th for a followup. He will tell us what Paul's next plan of attack will be with the cancer. Dr Bhandari says that more chemo will be necessary but how much more depends on how the tests continue to come back. He won't say exactly but gives us the impression that this cancer is aggresive and will need more treatments before we can rest.
We hope that Paul's "appetite" will come back soon so he can maybe get back to attempting to eat and swallow foods. The chemo has put a complete halt to that in the last two months.
We are going to try to get away for a few days to Ocean City, MD. Paul has a time share there and we were given a "bonus" week for paying the yearly dues on time. If all goes well the week of March 14th - 21st is when it's available. I look forward to putting aside our everyday stress for a few days and doing nothing!!
Thank you to everyone for your continued support and prayers in this longer then expected journey.
The chemo is definately starting to take it's toll. He is so so so fatigued. But he is extremely uncomfortable. One minute he is freezing cold and 20 minutes later he is overheated!! A ride in the car is interesting and at times very extreme, either blasting the heat or the windows are down and he can't cool down fast enough!! It is definately taking it's toll on him and me.
The last dose of chemo for this round is thursday. We have an appointment on Tues, Feb 28th for a CT/Scan. We will find out the results on thursday, March 1st. Dr Bhandari should be able to tell us if he needs any more rounds of chemo.
He did make it to work last friday. That was the only day last week and I will be surprised if he makes it in this week.
We drove all the way to Annapolis this morning for Paul's bloodwork only to find out that Kaiser was closed for the holiday. It never dawned on me to call and check!! Our friend Sandra will be taking Paul tomorrow for his bloodwork since I have to go to work at my accountant's for extra $$$. I help him out at tax time. It's a couple days a week for some quik cash :-)
Paul had chemo this morning. We get there at 10am but it always takes a little bit of time getting him hooked up. This morning took longer since his bloodwork had not been faxed over from when he went on Monday at Kaiser. So it was almost 2pm by the time we got home.
Thursday is hydration day. The chemo really knocks the wind out of his sail but being such a long morning made it worse. Then he spent the next three hours hooked up to hydration.
Sorry Willem, today just wasn't a good day for a visit :-(
Paul hasn't had the strength to go to work this week. I don't know if this is going to be it for a while. Time will tell.
Site created on December 30, 2010
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