Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting; Cathy & Jack
Jack had bilateral knee surgery in May of 2016 and was recuperating well for the first 5 weeks; but in June he began experiencing intestinal issues which were diagnosed at the emergency room as Diverticulitis/Colitis. A chest X-ray taken during one of his emergency room visits revealed a Right Pleural Effusion (fluid in the lining of the lung). Jack's breathing had gotten worse in the past year, and we attributed it to his COPD (chronic obstructive pulmonary disease) which he was diagnosed with 10 years ago. At the end of July, a visit to the VA in Togus for a Pulmonary Function Test and visit with the Pulmonologist prompted several tests. One of the tests was a Chest X-Ray which showed a large Pleural Effusion in the right lung. This prompted the doctor to schedule him for a Thoracentesis (a procedure to remove fluid from the space between the lungs and the chest wall called the pleural space.) They sent a sample of the fluid to a pathology laboratory, and a few weeks later, in August, the Pulmonologist told us that the diagnosis was Malignant Pleural Mesothelioma. He said this is a very aggressive and incurable disease.
Jack then saw an Oncologist at St. Mary's in Lewiston and had a PET scan. Since Mesothelioma is a rare disease, local doctors in our area (and in many other states) are not experienced in treating it so we decided to consult with a Mesothelioma specialist at Dana Farber Cancer Center/Brigham & Women's Hospital in Boston. We met with a Thoracic Oncologist at Dana Farber and a Thoracic surgeon at Brigham & Women's hospital (BWH) who specialize in Mesothelioma. On September 15th, at BWH, ,Jack had a lung tissue biopsy, and he had a surgical procedure called a Pleurx Catheter to help keep his lung free of fluid and thereby help his breathing. With the insertion of this catheter, it allowed us to drain fluid from his lung at home,
Our Chauffeur for all the Boston trips, my brother Terry, will take us for Jack's follow-up visit to BWH on September 26. This is for a post-op recheck and biopsy results; the result will identify which specific cancer cells are involved and help us determine the next course of action.
Jack's post-op appointment in Boston - 9-26-16. The tissue biopsy confirmed the diagnosis of malignant Mesothelioma, and identified the type of cancer cell as Epitheliod Mesothelioma. It was an encouraging visit because patients diagnosed with an Epithelioid cell type generally have the best life expectancy; although not curable, It is the most treatable. Treatment options include a major surgery called Pleurectomy with Decortication (P/D), followed by chemotherapy. This surgery removes the Pleura (lining around the lung) where the tumor is located, and takes all day; it requires a 2-3 week hospital stay. Recuperation is reported to be from 3 -6 months, depending upon various factors in different patients.
We need more information before Jack decides whether to go forward with the treatment. We have been told that 20 - 25% of patients who have the surgery and chemo may live up to 5 years or longer after treatment. This is a very aggressive cancer and without treatment, the survival rate is less than a year. I'll keep you posted when we have more information.
9/30/16 - Friday night: Some decisions have been made; we are going to Boston on October 6th, for a Mediastinoscopy. This is a procedure to examine the space behind the breastbone (sternum) in the middle of the chest, between the two lungs. It contains Lymph nodes, the heart and its great vessels. They tell us it will take 3-5 days to get the results of the biopsy from the Mediastinoscopy. If the cancer has not spread, he will be a candidate for the surgery and will be scheduled for 5 tests in addition to the routine pre-op testing.
10/6/16 -Jack's Mediastinoscopy procedure went well. The Dr. must have thought things looked ok because he scheduled the major surgery (Pleurectomy Decortication with Installation Heated Chemotherapy) for Thursday, 10/13/16, without waiting for the biopsy result. This surprised us both. The biopsy result should be ready Wednesday, 10/12/16 and there would be time to cancel surgery if it isn't warranted.
10/7/16 - Jack has tests scheduled today (Friday); we will stay in Boston Sat. Sun. Mon., he will have more tests on Tuesday and Wednesday and be admitted after tests on Wednesday. Never a dull moment; Jack's a real trooper. ❤️
10/11/16 - The weekend is behind us and so is our brief respite from tests. Jack had an eye exam that was necessary for his upcoming surgery, and he is scheduled for two more tests tomorrow before being admitted to the hospital late in the day.
THE THORNTON HOUSE
We are staying in a 3-story home called the Thornton/Naumes house that is available to Mesothelioma patients and family who live away from this area. To have such an affordable place to stay, and one that is across the street from the hospital has made it possible for Jack to receive care from a very specialized team of thoracic surgeons and we are very grateful. Jack's surgeon is Raphael Bueno, Chief of the Thoracic Division.
I read the "Well wishes" that so many of you have sent, and want to let you know they mean a lot. ❤️
10/12/16 - Jack had the final tests before surgery, and has been admitted to the hospital. 4:10 pm
10/13/16 - Jack's long-day surgery went very well. 🙏. All the prayers have definitely worked; Thank you all.
10/14/16 -Jack is now In ICU. They did a bronchoscopy, and removed his ventilator. As tubes get removed, they will get him up and help him walk with a specially designed walker.
Update: They got Jack up today and walking ; The walker is specially designed to carry all the necessary apparatus that is attached to him!
10/15/16 - Jack continues to do well after his surgery. He is very determined to do whatever he can to help his healing process; he amazes me with his strength and determination.
10/17/16 - Jack feels better and stronger everyday. They continue to remove tubes, lines and IV's; he is on a regular diet and eating well. Tonight he has been released from ICU to move into what they call a "step-down" unit. It's all encouraging news.
10/20/16 - Jack's healing continues to progress in the right direction. They removed another of his chest tubes yesterday (10/19/16).
Jack looks good. We don't know from day to day when he will be released from the hospital; It is mostly dependent upon when all the chest tubes have been removed. I will write more when I am not so tired. All the nurses love Jack; he is definitely one of their favorite patients.
10/21/16 - (Friday) they removed the epidural (a small tube or catheter that is threaded into the epidural space to infuse a local anesthetic) that was inserted after surgery. They don't keep it in for more than 10 days because of chance of infection; today is day eight so they want to see how he does without it. He will continue to receive oral pain medications.
Friday Evening: Jack has done well without the epidural; He looks and sounds good. Yes!! The support and prayers from our family and friends has made such a positive impact; thank you for your well wishes, thoughts, prayers, cards, gifts and love.
The IMP (International Mesothelioma Program) is a blessing. We are grateful for the care and expertise of the entire medical staff at BWH; and for all the research they do to increase the probability of a better prognosis for people diagnosed with the disease.
10/24/16 -Jack makes more progress every day. They disconnected a suction tube (called a water seal) today.
10/25/16 - Jack's chest tubes have been removed and in place of the last one removed, they inserted a one-way pneumatic valve. When the air leak seals, they will remove the valve.
10/25/16 - Good news; Jack has been discharged from the hospital and is staying at the Thornton house where I have been staying during his hospitalization . It is good that he can be so close to the hospital while we wait for the air leak to stop; We have an appointment with the surgeon on November 7, 2016.
11/3/16 - Thursday: Not a lot of news to report, but Jack has been improving each day at the Thornton house . We had an appointment Wednesday to check the chest tube drain and it looks good. The fluid has lessened and so have the air bubbles which both are good signs. Jack walked a couple of blocks with me today; that is great progress.!
11/7/17 - Monday - Jack had an appointment with his surgeon this morning; No release yet. There is still an air leak in his chest. They removed stitches from his large incision and pulled his chest tube a little further out of the chest. His Lung X-ray looked good and his surgeon Is pleased with the results. We go back this Friday for a recheck.
11/11/16 - Friday - Jack had his follow-up visit with the surgeon this morning; The small air leak persists so he did not get the green light to go home. 😠 They moved the chest tube a little further out of the chest to see if that will help to seal the air leak. A home health nurse visits three times a week to take vitals, change bandages, and check the chest tube.
11/13/16 - Sunday - It has been one month today since Jack's surgery, and we have been here in Boston for five weeks and three days! Every day we hope to see no air bubbles to indicate that the air leak has sealed so we can get his chest tube removed and go home. In the mean time, Jack is healing and the pain is starting to lessen.
11/20/16 - The air leak sealed on Thursday, 11-17-16. Yippee!! On that same day, Jack got the final chest tube removed.
With the tube removed, we decided to head to Maine to be home for Thanksgiving. We are home now, and it sure is good to be here after 6 weeks in Boston. We will return to Boston on the 28th of this month for a follow-up with the surgeon and will discuss setting up chemotherapy to be done in Florida.
11/22/16 - My friend, Kit, drove me to Boston and back today so I could pack up and check out of our room at the Thornton house. As I mentioned previously, Jack & I will go back to Boston on the 28th and my brother Terry will be our chauffeur. We are expecting that Jack's doctor will give him clearance to go to Florida after Christmas.
11/25/16 - We have been home for one week. Is has been a watchful time as I have monitored Jack's vitals and symptoms since we left the Boston area and the proximity to the hospital. Fortunately there have been no set backs and we are still set to go to Boston to see the surgeon on Monday. Jack has lost weight, but we are working on that. He is seeing some improvement in comfort and sleeping during the t night since the removal of the chest tube.
11/30/16 - Jack's visit to the surgeon (Dr. Bueno) on the 28th went well. His X-Ray looked good, and his surgeon said there is no problem with him flying to Florida. Dr. Bueno is going to contact the Moffitt Cancer Center in Florida to set up the Chemo treatments. Jack will have 4 chemo treatments, one every three weeks. He is noticing improvements in how he feels. He is sleeping better and the pains have lessened somewhat. All is going in the right direction.
12/4/16 - Sunday - Jack has developed a new problem; we noticed his speech was mumbled, and then it cleared up. It happened again on Monday - 12/5/16.
12/6/16 - Tuesday - Jack began having difficulty with phlegm accumulation in his throat that he couldn't easily expel. I took him to St. Mary''s E.R. and they did several tests including a brain MRI, a CAT scan of his neck and blood work; they found nothing. On Wednesday, 12/7/16 , he had not improved and we followed up with his Oncologist at St. Mary's . She made an appointment for him with an ENT to have a barium swallow and a Laryngoscope.
12/8/16 - Jacks swallowing problem worsened before we got to those appointments and on Thursday morning we went back to St. Mary's ER. More tests were done but there was no diagnosis so they admitted Jack to the hospital. A Hospitalist, an Internist, and a Neurologist, consulted and did tests. The Neurologist suspected that it might be a neurological condition called Myasthenia Gravis, but the initial tests were not definitive and he was waiting for results of a specific blood test.
12/11/16 - Sunday - The St. Mary's Hospitalist and Internist decided that it would be in Jack's best interest to be transferred to Boston where he had previously been treated for his Mesothelioma, and I concurred , so he was transported to Brigham & Women's Hospital (BWH)
12/12/16 - The Neurology team at BWH evaluated Jack and diagnosed him with Myasthenia Gravis. They started an intravenous treatment called IVIG - Immunoglobulin Therapy.
12/14/16 - 12/21/16
Week summary: Jack had difficulty breathing and swallowing so they moved him to the Neurology ICU to monitor him more closely;
the next day, his breathing and gag reflex had worsened and I later learned that, in addition to Myasthenia Gravis (MG) he has pneumonia.
12/16/16, Jack was intubated (placed on a ventilator). A very hard day.
12/20/16 - After four days, Jack was taken off the ventilator. A very good day. He still has a feeding tube.
12/21/16 - Many things have happened this past week; Jack will be given a swallow test to determine if his feeding
tube can be removed. He is scheduled to be transferred out of ICU tomorrow.
12/22/16 - 12/24/16 - Jack is out of ICU, the feeding tube is removed, and he is on a puree diet. Good news!
12/24/16 - Christmas Eve: Jack was released from the hospital today, I packed our things and vacated the Thornton
House where I have been fortunate enough to stay during Jack's hospitalization. Our son Todd came to Boston and brought us home.
12/25/16 - Christmas at home and family here with us. Very happy. The Home Health Charge Nurse even visited today!
12/31/16 - The first week home has been a busy one - getting a schedule in place for skilled nursing, physical therapy,
occupational therapy and speech therapy. Jack is doing well on a puree diet , and we are hoping the visit from the speech
therapist will result in him being transitioned to a regular diet. He has lost 60 lbs in the last 6 months, but he has a great
appetite now so he has started gaining.
1/5/16 - Jack is improving. The Speech Therapist has cleared him for a regular diet, and his appetite is great. He is moving around the house better and gaining strength.
1/10/16 - Jack's strength and endurance have continued to improve; however, he developed a rash which turned into blisters. after his Neurologist appointment today, we managed to get in to see his Primary Care VA doctor to check on his blistered rash. He has Shingles,!! The doctor has prescribed medication.
1/17/16 - Jack's shingles are getting much better thanks to the prompt diagnosis and prescription. He continues to gain strength, and his pain is gradually decreasing. (We're thinking "Florida"). He see's the Oncologist tomorrow so we hope to have a better idea of time frames for Florida and Chemotherapy.
I've read the well wishes recently posted and want to express our thanks for your love and support.
1/21/16 - Jack is still improving. He no longer needs visits from the home health care staff. He visited the Oncologist on the 18th, and she will see us again on February 1, after she has had a chance to talk with his Thoracic surgeon and Neurologist. Hopefully, we will then have an idea about whether we can travel to Florida and/or when he will be ready for Chemotherapy.
2/3/17 - Jack has seen his Neurologist and will continue to take his immune suppressant meds to keep his Myasthenia Gravis under control . Recently he developed a cough and severe breathing difficulties prompting visits to his Pulmonologist and Oncologist. A CAT scan and blood work were done and revealed that he has Bronchitis and the beginning of pneumonia! He is now on an antibiotic and a Nebulizer to nip this in the bud!
2/5/17 - Jack is doing much better since on the antibiotic and Nebulizer treatments. We watched the Superbowl game tonight with friends at the house and a good time was had by all.
2/17/17 - It has been 6 months since Jack's Malignant Pleural Mesothelioma Diagnosis; As you have read, a lot has happened in those 6 months. He is currently doing well, but needs to regain some strength and endurance. We are planning to go to Florida on March 5. With the warm weather there, he will be better able to walk outside and get back some of the strength and muscle mass that he has lost. It will be a wonderful change of scenery and will be good to see our friends there.
3/16/17 - We arrived in Florida on March 5 as planned. The weather has been great , and we have been boating and enjoying cook outs. Jack is walking and gaining strength. He has an appointment this month, for a consultation with an Oncologist at the Bay Pines VA; Jack's first chemotherapy treatment will be scheduled.
3/25/17 - Jack is scheduled for his first Chemo treatment on 4/7/17 at the Bay Pines VA in Florida.
4/9/17 - First Chemo treatment is behind us. On day 2 after Chemo, Jack is dealing with the effects; fortunately there are prescription Med's to help with the side effects.
4/13/17 - Today starts day six after Jack's Chemo. Aftere the first 2 days passed, he has had most of the symptoms we were cautioned about; feels yukky, tired, weak, and has little appetite.
5/12/17 - It has been a year since Jack had his bilateral knee surgery and 7 months since his lung surgery. His Chemo treatment was April 7, (35 days ago,) and he hasn't felt as good as he did before the Chemo. His decision at this point is to discontinue Chemo treatments. He visited an Oncologist at Bay Pines in Florida before we left this month, and he visited his Oncologist in Lewiston, ME today. He has an appointment with his Thoracic surgeon in Boston, including a Cat scan on the 26th of this month. It is a day-by-day regime of keeping up with medications, recording symptoms, visiting doctors and taking tests.
7-8-17 - Jack had a CAT scan in Boston on June 2; it did not show any cancer. ( : During the past couple months, Jack's activity level has gradually improved, and he has gained strength. He has been able to do light yard work and chores. He still has pain every day, but is able to keep it under control with pain meds and sleep is off and on. His appetite has been fairly good. One of the side effects from his surgery involves cold sweats across his back, apparently caused by the removal of sweat glands that control body temperature.
9-2-17 - The fact that I have not written in this journal in over a month is a good sign. There have not been any significant issues to journal, as Jack has been improving slowly, but continuously. The month of August has been the best since before his diagnosis. He has gained strength and increased activity on a regular basis. Pain and breathing issues continue, however, he is able to control his pain and be active. He is being monitored by his Oncologist, Pulmonologist, Neurologist and PCP who keep up with his current medical issues. Our next trip tp Boston is scheduled for October 13th.
October 2017 - Jack's CAT scan from Brigham & Women's hospital in Boston came out clean. (4 months after his last in June 2017))
5-20-18 - Hello to our friends and family. Jack had a new CAT scan at Brigham & Women's hospital on 5-18-18 (as soon as we returned from Florida). Jack started feeling worse after our first few months in Florida . He had a chest X-Ray in April 2018, but it did not reveal anything because there was so much scar tissue. We were scheduled to go to Boston on 5-18-18 for a CAT scan and blood work, so we kept with that schedule. The results of that CAT scan in Boston were not good. The Mesothelioma cancer has grown back - which explains why Jack has been feeling so poorly. Jack's Thoracic surgeon set us up for a visit with an Oncologist at Dana Faber the same day he had the CAT scan. The Oncologist explained that surgery was not an option and that Chemo was the only option to try to shrink the tumor. An Immunotherapy treatment (Ketruda) is an option for some people, but because of Jack's Myasthenia Gravis, it is not a good option for him. We will contact Jack's Oncologist in Lewiston and set up a chemotherapy session as soon as possible.
6-28-18 - Jack had a Chemotherapy treatment on June 5, 2018 and did not tolerate its effects well. He became so ill that he could not eat or drink and had to be hydrated in the Emergency room. It was a frightening time. He is now back to feeling at least as well as he did before the chemo treatment.
The healing touch of family & friends, including a visit from his brother from Maryland and his sister from PA surely aided his recovery progress.