A Memorial for my Loving Bride
~ Her Personal Cancer Journey ~
I want to thank everyone so much for your support and love through this difficult time. You have given me strength and I will continue to lean on you all in the coming year(s).
Below is a direct note from her Mom:
" I just want to say I loved my daughter so much and I will miss not being able to call her and talk about things or how we feel. I am so thankful and I guess that is why God had me here at 75 because he knew she needed me to take care of her. I am so grateful that I had the strength to do this for her.
I am so honored that I met all of her friends from all the different clubs she belonged to. I thank all of them for being so close to her and loving her like they did. I am so honored to know all of you and for everything that you did for her.
She could not have had a better husband to take care of her and to be with her in her last 2 years with all she had to go through. She had all the love she ever wanted from him and she knew it. I am so proud of him.
Thank you all and I love all of you"
Jan's Mom (Josie)
July 5th. 2010: Well, the past 3 weeks have been a blur. I have had many emotions and continue to struggle with the loss. I feel cheated that I didn't get to say I LOVE YOU one last time.
On the 19th of June, we had a private ceremony at Hunting Island State Park. Jan so loved the beach and that was one place she wanted to be. I left her memorial there and I know she would have approved. It was very emotional as we took turns spreading a portion of her ashes around her chair, favorite book, flowers and even her special glass (thank you Donna) filled with her drink.
Today I returned with our daughter Leslie from Chicago. On Friday, the 2nd of July we put more of her to rest with her father in Clinton, Indiana. Her immediate family and relatives from Clinton were there. Thank-you Aunt Eileen and Uncle Bob for the dinner and the time at your home.
Saturday, the 3rd, we had another memorial service in Lockport, Illinois with all of her family, relatives and friends who were unable to travel to Beaufort. It was held at the First Apostolic Church. The service was incredibly emotional. There was a dramatic representation of her favorite song 'Revelations" performed by the church youth group that was breath-taking. The testamonials were touching as each of Jan's brothers and sister spoke of her. I special gratitude to Pastor Perry Walker, the youth group and the members who organized the event and fed us as well. It was so much more than I imagined and I am eternal grateful.
The pictures below are of the memorial tattoos that I, Jan's daughter and sister Becky had done Saturday night in Chicago. Call us crazy but Jan will permanently remain with us and there will be others that follow I'm sure.
Jon's 
Leslie and BeckyGod bless you all for the tributes, the cards, support and a special thank-you for the many memorial gifts that have, and continue to be made to CAPA on Jan's behalf.
June 12th: This will be Jan's final entry.......
My darling bride and the only true love of my life passed away this morning at 4:25 AM. She was up at 3:15 AM to get her medication when she began coughing blood profusely. She was unable to catch her breath. By the time 911 arrived she was unresponsive. She was struggling to breath so I watched helplessly as they placed her in the ambulance. Through the rear windows, I saw them attempting to intubate her as they were prepping her chest for cardiac arrest.
At the hospital, after what seemed like an eternity, they led us to a "quiet room" where the attending ER Doctor explained that her heart had stopped and her lungs had filled with blood.
I lost the most important person in the world this morning. She knew the end was near but no-one was prepared for this ending. We always thought we'd have hospice and be by her side while she peacefully drifted away. She was planning a movie with her Mom and our grandson today and there were no indications last night that would've lead to this.
I could write so much more but I need to stop before the anger comes across the writing. I know Jan would not have wanted that as she is shagging in Heaven with her father.
I thank all of you who have walked this Journey with us. I love you all. I just wanted a little more time and one more kiss.
JAN - I LOVE YOU WITH ALL THAT I AM - JUST KNOW ,,, JON
This was her journey.....
Diagnosed with Stage III inoperable CANCER in April 2008.
This will be an attempt to outline my journey through CANCER. This is for the many loved and caring friends and family members that want to know how I'm doing and what is the latest news. It may at times seem to jump around but then my life has been very much a merry-go-around these past 2 years.
All of this began with a pain in my shoulders. My friend and I, were working out everyday at an area gym to prepare ourselves for a group trip to Jamaica. We decided that any excesses we had were not going to Jamaica to distract from our fabulous swimwear. : )
Around October 2007 I started to notice an increased pain in my right shoulder blade. I had just changed to free weights so I thought I had pulled a muscle. I discussed this with my doctor and was sure I had pulled my rhumboid muscle. Based on my description, the doctor agreed and sent me to physical therapy. The thought of an CT Scan never once crossed my (or his) mind at this point. After 3 months of therapy I still had some issues with the pain. Jamaica was in January so it would have to wait for my return.
After returning from Jamaica I continued to see my doctor and discussed the next step. We agreed to do the scans. Surprise !!! The tumor was discovered. It started in the top lobe and extended through the lung wall and into the chest tissue.
For ease in reading, instead of chronological order, I am going to start with the latest news and end at the beginning:
The following has been my calendar of events since:
June 10th: The Actinomycosis has been getting the best of me lately. I started bleeding and coughing up blood yesterday. I called the Dr. and we discussed what was happenning. It subsided somewhat today and he says it is a combination of the infection and the irritation of my throat lining. This happened a month ago and he feels it will be a recurring condition. All these antibiotics and we can't get it under control. Feels like I'm choking all the time lately.
June 3rd: Well, we made it to Jacksonville for Memorial weekend. Beach was packed so we found a quiet hotel closer to the beltway. Worked out great. We took a wheelchair along and Jon cruised me through an actual Mall Sunday. Afterwards, we went to Olive Garden. It was a relaxing time for us both to just 'get way' from all of this for a couple of days (even though we brought the contraptions with us). My poor Mini Cooper was loaded down but everything had its' place. Last Tuesday, I went back for my next chemo treatment. Again, he has decided to do a 'trial' run with minimal drugs to see how I do. I'm going back today to get fluids and discuss some headache issues. We will also setup a time factor for the next PET scan. To be continued.........
May 26th: The last 10 days has been a real strain on me. Not much energy and I've been tired alot. The breathing has gotten worst so I'm pretty much tethered to the oxygen line at this point. Last week I saw Dr. Manos and discussed the infection in my throat. It has not diminished with all the antibiotics so we're trying something new now. I have a 'dangler' installed on my port-a-cath and I am administering a new antibiotic intravenously now. It's a compressed ball that releases the medicine over a 30 minute period. I have to do this twice a day now for the next 3 weeks. Something has to work. I'm still on for the full blown chemo on the 1st of June. Tomorrow my Mom leaves for the weekend in Chicago. Jon and I are hoping to pack up all my 'stuff' and drive to Jacksonville, FL Saturday and Sunday. This way we can pick Mom up on Monday at the Jacksonville airport. I need this break and I know Jon does too. He's hesitant about going with me in this condition but I'm convincing him it will be OK. I can handle the drive and we'll just lounge around the hotel. Just Jon, myself and my oxygen tanks. Sounds like a blast. I'll keep you posted on how it goes.
I do want to personally thank everyone who has sent me cards over the past couple of weeks. I have missed so much and your cards lift my spirit much more than you realize. There is a world outside of my illness and your cards remind me of the many caring friends that I have. Bless you all.
May 17th: Last week was both good and miserable. On the 11th I went for my 1st new chemo session. The doctor had decided that this would be a "trial" run to see how my body would react. Gave me 2 bags (instead of 3) of the combination of drugs, some fluids and will now wait 3 weeks before he goes full steam ahead. That afternoon, Jon went to the airport and picked up my brother Al. He stayed until Friday. Tuesday I was a bit tired, Wed and Thursday came and things were a bit slow for me. Friday, I hit the brick wall. I was completely down and stayed in bed all of Friday and Saturday. Just pain and nausea. Had plenty of meds so I pretty much stayed under the radar. Wished I could have been better for my brother's visit but it is what it is. Sunday Jon finally insisted I get up and I lounged in the living room. He can be such a tyrant at times but it's for my own good and I know that. So now we will see what the next week brings.
Jon said someone dropped of some cookies over the weekend and left them on the hood of my car. They were homemade macadamia nut cookies and according to Jon were quite delicious. I'm sure he complained the whole time eating them. Whoever left them, Jon says thanks and he can use some more (laughing).
May 10th: Had a great Mother's Day weekend. The coughing continues to get worst but I did make it to the pool outside. Jon had to help me but it was so nice to feel the breeze and smell the freshness of the air. Funny thing though, Jon was blowing the squigglies from around the pool when he got a bit too close to the edge. Yep, he and the backpack blower fell into the pool. He came in just a yakin' and drenched. Always said he pushed the envelope at times. Lesson learned.
Tomorrow is the start of my 3rd round of chemo. 2 weeks on, 1 week off and repeat. I'm a bit scared and relieved at the same time. Finally doing something with the cancer again. If I could just get this breathing thing under some sort of control. Damn the necessities of life.
April 30th: Well, another tough week has almost past. Jon picked up my Mom yesterday and she will be here helping me for some time. Jon won't admit it but he could use the break. Yesterday we went to see my Oncologist. He agreed that I at least look better than last time and has decided to go forth with the next round of chemo. We will start on the 11th of May. We will do this in stages based on how my system reacts. He said there will be no stopping at this point and to be prepared for some serious down time. Down time,,, funny,,, that's all I've had for the past couple of months.
My pulmonologt, Dr. Manos said the biposy of my throat came back OK. He seems to believe that the infection is long term and it will be just another thing that I may have to endure on a permanent basis. Stay on the penicillin and that gold-layered gentamicin.
April 24th: Happy Birthday MOM.... Wish I was there at your party. I miss everyone. To everyone, I Love You all !!!
April 21st: Had a horrible week. Last weekend I got extremely weak and was unable to breathe and the coughing was getting worst. Talked to the doctor and he scheduled me for a bronch scope and trachea cleaning for Tuesday. He also ordered me a home oxygen setup to be used 24/7. Now I have the pleasure of having a 25 ft tube connected to me so I can move around upstairs and still breathe. I felt this would help and make my trip to Chicago much better. Besides, I have the portable tank so Jon says I can go to Walmart and ride in one of those electric scooters like a real winner. Dr. Manos also ordered me this liquid (surprise, not covered by insurance) that I have to use in my nebulizer twice a day. It's called Gentamicin and is usually injected in the hospital and the FDA has not approved it for home use. Go figure. Another quirk but considering the million dollar plus tab so far I can't complain about a couple hundred bucks for a months treatment.
Well, we did the bronch on Tuesday but that hasn't helped much. Thursday I saw my oncologist. My oxygen level was way down so they put me on their breathing apparatus. Seem to be going downhill fast lately. Dr. Hall said under no circumstance was I to travel so I am writing this update here in Beaufort instead of being in Chicago for my Mom's birthday. Another planned trip gone down the tubes. Jon's money tree is losing it's leaves fast. Now we are getting Mom back here hopefully next week to help. If that wasn't enough I found out the cancer has spread to the lower lobe of my right lung as well. Let's see, the main tumor is in the top right lobe, also in the bottom right lobe, and the nodules are in the left lung. Can't do anything half-ass I guess. Now the chemo is on hold until they can get the infection under control in my trachea. Meanwhile, the cancer has a field day unattended. Can't do chemo when your body is weak and fighting other issues. Talk about a catch-22. So now they have boosted the steriods, penicillin and other meds. A walking, talking, oxygen connected work of art. Just can't walk and talk at the same time. For those who are curious, Jon is typing all of this. I can barely get around. I pretty much stay still and let the meds to their job. Weak is an under-statement.
A lot of my friends have called and asked about visiting. I can use it. I don't run around the kitchen making tea and briskets but I can still sit on the couch and talk. Oh, and it's not contagious...and I promise not to put you to work. HAHA !
April 13th: Well it's unlucky 13th day. I had a visit with my Pulmonologist. Had to go through the breathing tests and another X-ray. He identified 5 cancerous nodules in my left lung. Guess I'm not surprised. Just numb at this point. The chemo will start soon and hopefully (change that to IT WILL) kill the new 'spots' as it attacks the main tumor. All I can do is be positive and trust in God to do his will.
Monday, my daughter and I drove my brother back to the airport. I can't tell you how much I enjoyed his visit. We discussed the Lord's will all weekend. He is a good man and has come so far. I am so looking forward to Jon and I going to Chicago next weekend. Need to escape this for awhile.
April 9th: What a day. Jon went to Jacksonville, Florida to pick up my brother Dan from the airport. While he was gone I had to have my gastric tube replaced. The doctor gave me heads up that it was going to be a bit uncomfortable. See, the tubing had deteriorated to the point where it was springing leaks and there was no more room left for Jon to cut it down and replace the tip. (He's become quite the mini surgeon here at home) Now the doctor had me increase my pain meds prior to getting to his office. Oh I did all right, I doubled my dilaudid and added a morhine pill as a booster. Okie dokie .... He had me lay flat, grabbed the tube and pulled it straight out of my stomach. Smart I tell ya. I was giving him one shot and one yank at this. Once out, he put the new tube in through the hole in my gut, added some air which expanded a bubble on the inside and placed a slider disk clamp on the outside to keep it all in place. Really wasn't as bad as I thought. Maybe it was but the pain meds took their jobs seriously and I didn't really care. We'll say it was the latter. Either way I'm good to go for another 3000 miles or 3 months.
April 1st: Saw my Oncologist today. Seems the weekly shots have brought my hemoglobin up to a level where we can now look at a chemo schedule. I explained that I wanted to take my Chicago trip end of this month and now it's a go. Going home with Jon 22nd through the 26th. We will start chemo first part of May. For now I have to get my throat 'sucked out' to remove the excess mucus. That will be done tomorrow. I'm pretty sure my metal slab is still warm at the hospital. I'm on the frequent occupant plan and saving my points for a new head scarf for the summer when I lose my hair again.
My sister Becky flew in from Chicago and stayed a few days with me. We laughed, cried and had a wonderful time. For those local, Bricks on Boundary is a great place to eat. Just plan on having leftovers as they can load a plate like crazy.
Next Friday, Jon is picking up my brother Dan in Jacksonville. He's flying in for the weekend. It is so great to have family around you. We sometimes take that for granted. Call a family member tonight and tell them you love them.
March 9th: To date my journal has been so full of medical procedures and medical words.. Well let's lighten it up some. I am having two quiet weeks here and it is really what I would call different. Last week just me and my own days except for Thursday when I had to get "the shot". Now let me say these anemia shots go in real slow and burns every second of the way. Last week I took my son Josh with me just for support and to keep me distracted from the shot. Well this time the shot lasted 5 seconds. I will have that nurse every time! This Thursday I go for a quick appointment with Dr Hall and of course another shot. I am going alone on this shot. I WILL have the same nurse!!!
My niece came in from Chicago and stayed with me for a couple of days this past weekend. We had a good time just visiting. It seems I am going to be getting a few visitors in the next month from family. That I am welcoming with open arms. A good time here and I Thank God for it.
February 25th: Well, today was filled with emotions, happiness and disappointment. Emotions as a roller coaster ride up and down. Happiness as we found out that the tumor discovered during the bronchoscopy is NOT CANCER. It is 'Actinomycosis". This is a bacterial infection that affects one in 300,000 persons. (Lucky me...) It develops into a mass which can be mis-diagnosed as CANCER. This is treatable with antibiotics over time. A new pill I am more than happy to take considering the alternative.
As for the disappointment, I saw Dr. Hall this afternoon. My CANCER has increased in size and activity to the point it needs intervention. That means more chemo. Since I am a bit anemic we have to wait until we get the red blood cells back in check. This means I will be getting some sort of "blood cell booster thingy shot" for a couple of weeks to get my health back up. Once that is stable it's back to the chemo chairs. This is a new combination of drugs and from his description, it will be a doozy. I never knew that the body remembers the kind of drugs that get introduced and learns to 'ignore' repeat sessions. You have to use different drugs to trick the body and work at the same time. Go figure. Maybe that's why a husband pretends to 'ignore' our otherwise intelligent decisions of life. Gotta trick them once in awhile.
Anyways, in about 3-5 weeks we'll start these sessions for 12 weeks at a time. Stop, check and repeat. Kinda like bathing. Wash, rinse, repeat.
February 24th: Monday had the PET scan. Will get the results on Thursday. Yesterday Dr. Manos did his procedure. Things did not look promising or even routine for that matter. He said there is a tumor that has invaded both lungs where it branches from the trachea. Don't know what to say other than wait for all the biopsies and scans to be read before I can believe anything. It's hard to be optimistic when the doctor speculates that it can only be 'the C word" based on my history and current condition. He did clean out as much of the mucus as possible but told Jon that it would be an on-going battle. He is also going to discuss the results with the other doctors. I always said they needed to be on the same page. Seems at times that they contradict each other as to where I'm at. Jon and I talked a bit last night. We've got some tough decisions ahead of us. Bottom line is "it is what it is". We can only deal with one day at a time. All we can do
I will post the results as soon as I find out. God bless you all. Oh...Mom is leaving today. Back to Chicago for awhile. Jon,,,out of the on-deck circle and back into the batter's box.
February 20th: Well, it has been a busy week here. Mom spent last weekend up in Fayetteville, NC so I got to spend some 'alone' time with Jon. Oops I forgot, 2 of my darling grandbabies decided to spend the weekend with us. Sorry Jon, soon I promise. We laugh about it.
Tuesday I had a follow-up with Dr. Hall (Oncologist). He explained why he has delayed further chemo sessions on the CANCER. You see, the body develops immunities to the drug, including chemo, the more it is introduced. Chemo is CANCER's big guns. You don't want to waste its' effectiveness when you have other conditions distracting the blood's natural defense system in other areas. My body is essentially too weak fighting other areas to allow chemo to get the maximum results. We will let the pnuemonia subside and try to get my strength up first. He has scheduled me for another CT/PET scan for next Monday.
Wednesday I had a follow-up with Dr. Manos. He said the pneumonia is pretty much cleared up. (pause for applause) We discussed the contant coughing and the mucus buildup. He was under the impression that the coughing was a recent development. I explained that I had been coughing horrendously since the last stint placements. I have always had these episodes when the stints where in. It's the throat's battle with foreign objects it doesn't recognize. The mucus is the system's protective coating for the throat. It's a never-ending battle of body vs. object. Dr. Manos is going to perform a brochoscopy next Tuesday to check things out. Since he's going to be my new and hopefully permanent spearhead on this it's a good idea that he gets acquainted with my body. Why not. Everyone else has.
February 13th: Jon and I went up the Shag Club's Valentine Dance. We haven't been a part of the club's events for the past year. It was so good to see everyone. I was able to stay for a little over an hour. Robert played one of our favorite songs but I'm not able to dance. That was sad. I just lose my breath too easily and there was a lot of talking. People always say how good I look. I wish I felt half as good as that. The stints keep me from raising my head up to talk so everyone pretty much has to kneel to talk to me. That makes me feel bad but I can't do anything about that. Wish I could. I did make it to the 'goodies' table just to window-shop. Everything looked great. I sure do miss the club and our friends there.
February: Not starting off too good this month. Today (3rd) I had my appointment with Dr. Manos. He did another chest X-ray and it appears since last Friday's X-ray I've developed some pneumonia. In the left lung with some trace in the right. That could explain some of the severe pain I've had coughing lately. I am so out of breath and the pain medications are not really doing their job 100%. He has put me on a couple of antibiotics and a steroid to clear this up. Either way, it's back in the bed for me to get some rest.
Mom has delayed her return home. She will stay a few more weeks now.
January 29th: Bad night. The blood starting pouring out of my mouth. Went to the Naval Hospital and they sent me to Beaufort Memorial. Spent all day in the emergency room. Met Dr. Manos. He is the local (and only) pulmonologist (lung Doctor). The hospital was going to admit me but I insisted on seeing the doctor first. He ordered a CT-Scan and confirmed that the issue was due to irritation of the passageways due to all the coughing. He elected to let me go home and he will start seeing me on an out-patient basis. I've heard nothing but good things about him. He says he can do the necessary maintenance of my conditions to include stint work if necessary. Maybe my trips to Charleston are over. I hope so. I see him next Wednesday for the first visit.
January 28th: The cough is still my focal point now. Seems to be getting worst. Yesterday I started coughing up blood. Another thing to worry about. Jon did his usual research and called Dr. DeRosimo last night. He feels it may be due to the violent coughing I have had and my trachea walls are irritated. Advised us to watch it for a couple of days. If the blood subsides that will be a good thing. If not, I will end up somewhere for further evaluation. Worse case scenario is that the cancer has compromised the trachea. Will hope it's the irritation. Jon says positive thoughts = positive results. Mom leaves next week to go back to Chicago. Back to me, Jon and the babies.
January 2010: The year has started much like I expected. The two stints seem to be working but I am starting to feel the esphageal stint. Slight pain there. I am having a horrible time getting control of the mucus buildup and the constant coughing is getting on my last nerve !! The more I cough, the tighter my stomach gets. That causes a "backwash" in my G-Tube which causes issues itself when I try to feed at night. My throat is pretty much raw but hey, I'm breathing and that is always a good thing.
Jon has me back on the pump at nights. My idea, but I'll give him credit. Now I can feed a couple of cans while I sleep and that allows me to go a bit longer during the days without the constant interruptions to feed. Lucky me. I also have started a nebulizer. Not sure if it is doing any good though. Supposed to help loosen the plehm but just another loud device at this point. Besides, another tube is just what I look forward to.
See Dr. Hall next week. My routine visit and to get my port flushed. Yep, still have it and they flush it every month.
December 2009 - This has been a terrible month. Had planned on a long awaited trip back home to Chicago during Jon's break at work. Instead, anticipated a surgery that never occurred and instead underwent another stint work. Now I have 2 stints in. I have a severe cough that is due to the mucus contantly building up in my trachea. I do not have the strength to immediately cough it up so it lingers in my throat for days at a time until I can finally muster enough repetitive coughing to bring up what has now developed into a plug of sorts. My doctors(s) say this is going to be my quality of life and to pretty much deal with it. Take advantage of the good days (as if there are any) and do things that I want. Sorta like a "bucket list". They did order me a pump and tubing for me to cram into my nose and push down to the area where the secretion sits to pump it out. Yep,, this one I'm holding in reserve. Can't wait to try out this new pain maker. Why not !!
My pain never subsides and I am on constant medication to try and control it. Dilaudid has now become my regimen. GI cocktail to soothe my throat and retalin to keep me balanced. That's right... 53 years old and I'm on Relatin. Focus Daniel-San.... Focus.
I have to feed at least 4 cans of nutrition a day. That means every 3-4 hours I have to stop everything, prepare the formula and feed through the tubing. Smells awful but I can make-believe it's anything I want. Steak, lasagna, even seafood (and everyone knows how much I love the thought of seafood -- haha). I am going to get the night auto-feeder back so I can go back to feeding while I sleep. The noise is wonderful and the machine has a glow that Jon says radiates my natural beauty at night. He smiles as he looks at me at 3 in the morning since the machine has the sounds of "You Ain't Sleeping Now" played over and over. God I love that man.
My Mom is still here with me but she will probably be leaving mid to late January. I know she misses home and she was supposed to leave right after Thanksgiving. Jon will pick up the slack when she leaves. Funny thing, everyone knows it's wonderful when my Mom is here because she does all the household things for me. Cleaning, laundry, etc. Little do they know that Jon is Super-Spouse when no-one is here. I've made him quite the domestic husband and he even folds correctly now. Just got to get him to embrace ironing. Still working at that one.
Oh well, enough about me. That's right,,,, this is about me. LOL. Got to go now. It's time for my meds and feeding. BTW, Dr. DeRosimo called me Christmas Eve and the MRI of the brain came back clear. A bit of shining star.
Dec 16th - Had surgery yesterday. Left stint in the trachea and added a shorter stint in the esophagus that covers the fistula opening. Really rough sleeping. Coughing all night and I hope it is related to the soreness of the throat with all the work that was done. I sure don't want this one to slip. Dr. said everything went well and that the fistula was the same size as measured last month.
Dec 11th - Another change. Surgery is OFF !! The active cancer cells in the chest tissue are too close to the throat. Risk factor is too high which could lead to a esophageal bypass and a possible tracheoctomy. No quality there.
Dr. will now try some alternate stint techniques. The temporary patchwork continues. Scheduled for surgery 15 December 09. While leaving the trachea stint in place, they will position a shorter stint in the esophagus to cover the portion of the fistula that is exposed at the bottom on the trachea stint.
Dec. 2009 : Scheduled for a consult with Dr. Day on the 7th. He will explain and be performing the procedure with my normal Doctor. ?????
Nov 23rd : Another problem with the stint. Discovered the fistula is exposed at the bottom of the stint. Dr. feels he has exhausted all stint options and that the fistula is not healing. He will now graph my arm for tissue and arteries to be used to design a patch for my throat. Major surgery ahead and I am worried beyond means. I am so tired of the pain and the possibility that this too will not work.
Did ultrasound to see if quality tissue and arteries can be extracted. Also need a biopsy of the cancer to determine best surgical method.
There goes the holidays. Week in the hospital and 6-8 week recovery.
Nov 09 : Back to MUSC to have granulations lasered from the stint. Now it seems the trachea is closing where it branches to the lungs. More test and scans to determine treatment. Another (vacation) night in Charleston.
Esophageal stint was too long. Removed and replaced with a shorter one. Still having breathing issues as of today. Always something. I can't begin to fathom that this is now my quality of life.
Oct 2009 : Constant pain in the back and front of the chest. Dr. thinks the front pains are spasms associated with the stint. He has ordered a CT-Scan and X-Ray for the back. Should get results by the 20th.
X-Rays appeared normal but breathing issues have returned.
Sep 2009 : PET Scan performed. Increased activity again. Still within the parameters of the 3 cm tumor. SUV value is 9 ??? Will continue to watch.
Went to MUSC for evaluation. Dr. feels the fistula has healed and the stint could be removed. While removing the stint, the fistula had healed around the stint and while removing the stint, reopened the hole. Major set-back. He replaced the stint with a new one.
Returned to MUSC 5 days later. I was choking and unable to eat since the stint was replaced. Removed the stint and discovered it had holes all around the top circumference of the stint. Manufacturer’s defect. He will send back and has put another stint in its’ place.
May 2009 : PET Scan performed. Exam showed renewed activity in the original mass area. This activity will be watched to determine when and if additional CANCER treatments will be performed. During this month, through weekly dilations, the esophagus can now accommodate a stint placement. I returned on May 29th to discover that the stint did not fully open. It was removed and another stint ordered for placement in June 2009.
In 2009, the tracheal stint was replaced with a larger and longer stint. This stint was scheduled to be removed in May 2009 and replaced by an esophageal stint. Throughout I had undergone weekly dilations of the esophagus where it would accommodate a stint. I also learned that the original cancer tumor is now showing increased activity again. I will learn of the next series of treatments as the PET scans continue.
Nov 2008 : As a result of the hole (fistula) in my throat I was unable to eat or drink anything. The natural muscle tissue of my esophagus was damaged to the point where any substant food was lodged and unable to move down my esophagus and into my stomach. Also, any liquid I drank would seep through the hole and into my trachea. Hello ,,, it's choking time. Since I couldn't eat, I was fitted with a permanent feeding tube that protrudes from the front of my stomach. I also had a stint placed in my esophagus which soon slipped and fell into the stomach. This was removed and a stint was placed in the trachea to help healing.
Apr - Oct 08 : Had a permanent port-a-cath implanted above my left breast. This they will use to administer chemo and to readily access my blood and who knows what else. I endured radiation therapy (47 sessions) as well as 2 chemotherapy regimens. The radiation severely damaged my esophagus and the damage had extended through to the trachea. Seems the radiation was so concentrated in this area that it burned a hole through my throat.
Still alive and living with this...
