More about Mom

As we spend more time as the hospital, we see there are fewer medical options to provide long term help for Mom.  Yesterday they did place a third stent into her colon, but they were not able to place it where they wanted to.  The GI team said there was a small chance it would alleviate the obstruction, but it seemed more likely that the stents or future stents would not work.

Mom’s surgeon came to talk to her last night, and the rest of us were with her.  He spoke to her thoughtfully and gently about her situation.  He said that surgery to fix the bowel obstruction was a tough option because there were many downsides – it might not work, it would be very difficult to heal, new tumors could cause new obstructions.  With no chemo options available there was nothing to keep the cancer in check.  Mom said she was interested in having her remaining time be of the best quality that it could be. He said it could be a few weeks, it could be a few months, but gently suggested it would not be much time.

Mom was so very strong and amazing during the talk with the doctor.  She said this was not the news we had been hoping for, but in many ways it was not a surprise.  Mom talked about how grateful she was for this past year, how it had been such a gift to do special things, to spend time with friends and family, to enjoy life.  As I write this I don’t have enough mental or emotional capacity to find the right words or even remember her exact words to convey how inspiring Mom was and how helpful the doctor was to her and us.

We would like to bring her home to her Golden Pond House for hospice care, to watch her beloved pond, to be near her fireplace, to be with Dad and us. However, that is difficult to know the specifics at this time.  The doctor is weighing different options about whether to place some tubes to continually drain her fluids.  She is experiencing one of her intense pain episodes this morning, so the doctor's first priority is to manage her pain.  We hope to bring her home within the week but we just need to take things day by day.

When her pastor and a few of her close friends from seminary came this weekend, Mom told them that she really felt that God was leading her through all of this, just like how he led her to Rhode Island, the church there, then seminary and ordination.  This too was part of her journey and she felt God’s presence along the way.  She also said they she really felt held up by everyone’s prayers.  Thank you for your wishes and prayers for all of us. 

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The Latest

Yesterday was overall positive news.  The CT scan done Monday showed the GI team a better view of the partial bowel obstruction, and the scan did not seem to indicate a new major tumor issue.

The GI doctors late yesterday afternoon inserted a stent into mom's colon with the hopes of opening up her partial bowel obstruction. This endoscopic procedure took more than two hours.  It will take some time to see if this works; over the course of the next few days the stent will slowly open.  It seems more than likely the doctors will do another endoscopic procedure at the end of the week or early next week to see how much of an opening the stent is providing and to place another stent a little further up in the colon. It would be a great sign during the next few days if she could move her bowels on her own. This would hopefully go a long way in releasing the great pressure of the fluid and air in her digestive tract. 

Last night after the procedure the NG tube draining her stomach was not working properly so mom was up most of the whole night. The three of us with her at different times throughout the night, Katharine being with her for the most difficult part.  They moved her to a private room today so she could get more rest.  The medical care there continues to be very good - not only smart and competent doctors and nurses, but also very caring. Being at the hospital makes us even more in awe of the family and friends in our lives who work in the medical profession.

Mom is Back in Boston

Yesterday we flew with Mom and Dad from Florida back to Boston. With big snowstorms up and down the East coast on Thursday, we were very grateful that our flight was on time and uneventful. Mom made it through the flight and undoubtedly no one on the plane knew how sick she was.  After arrival at the airport, we drove directly to the emergency room at Brigham and Women's Hospital.  The hospital was so crowded that the ER waiting room was moved to the hospital lobby so they could use that waiting room to treat patients.  Since mom's surgeon knew she was coming and due to her health issues, they fast tracked her and she was seen relatively quickly and then admitted.  

Looking at her scans taken in Florida, the Boston doctors see the narrowing of the colon that is causing much of her pain and bloating.  The oncological surgical team proposed that perhaps a stent could be placed in the colon during a endoscopic procedure (similar to a colonoscopy) to enlarge the colon's opening.  This would be a minimally invasive procedure as compared to surgery.  However, there are many issues for the gastrointestinal team to consider (such is there enough of an opening to insert the stent and will the stent stay in place after insertion).  The "advanced gastrointestinal team" is meeting with the oncological surgical team on Tuesday to review previous scans, an upcoming scan and mom's overall medical record before making recommendations regarding the stent or other procedures.

Poor mom is dealing with many issues in addition to the partial bowel obstruction.  Her pain fluctuates and can get bad very quickly. Here in Boston they placed her on a IV where she can control her own pain med dosing.  She has gained 30 to 40 pounds in fluids in the past two weeks, distending her stomach and filling her legs with fluid. This makes walking and moving around painful.  Some of the fluid retention is from the cancer, but they think a majority of it from the bowel obstruction.  Last night in the middle of the night she started spitting up stomach contents so they inserted a NG tube into her nose to drain her stomach.  It was difficult to place the tube and took several attempts, but she did find relief as some of the intense pressure was relieved.  Mom is also on a catheter to monitor her urine output. Tonight that was not functioning, making mom feel like that everyday has something new to deal with and overcome. (As I write this, Michael tells me the new catheter seems to be working.)

With all these issues going on, we are so glad that we were able to bring her to Boston and this hospital.  In our first hour of talking with the doctors in the emergency department and oncological team, we learned so many new things through their thoughtful ideas and from their clear explanations.  While there were some very good doctors and nurses that stood out when mom was in Florida, the caliber of the doctors in BWH in Boston is amazing. I said to mom in the ER, "I feel like we are on a different planet." 

Dad is hanging in there. The hustle, bustle and noise of hospitals are not conducive to an 88 year old man who has difficulty walking and hearing. He worries about mom and is not sure at times what to say to her. He is glad to have his kids and family around to help mom and him too. Right now in Boston, we are staying at a hotel very close to the hospital where we can take dad back and forth to see mom. 

We will let you know what the doctors decide on Tuesday. Thanks for you good thoughts and prayers for mom!

Heading North Soon

Mom is still in the hospital and it's been a tough week for her.  They did not want her to leave there until she moved her bowels, so all sorts of measures were tried from medicines to a painful gastrografin enema.  Scans did not indicate a blockage, so they performed a colonoscopy yesterday.  The gastroenterologist found a partial obstruction he believed potentially caused by a tumor on the outside of the colon, though recent scans have not shown a tumor in that region.

We are flying out of here on Friday, waiting for the big snowstorm on Thursday to pass.  We will go from the airport straight to Brigham and Women's Hospital in Boston to be admitted to the hospital.  There her surgeon from the Dana Farber Cancer Institute will evaluate her to determine if she does have tumor constricting her colon, if surgery alleviate the blockage (resulting in a likely colostomy), and evaluate how her overall health and strength. Mom wants to keep pursuing options and the doctors think potentially there are some measures she can take. Mom's oncology team in Rhode Island has been wonderful in helping us sort through all of this, and we have great confidence in them and in her Boston surgeon to guide her and us through all of the upcoming the decision making.

Currently Mom is able to walk around, she is on a clear liquids diet and her pain level fluctuates from uncomfortable to severe pain at different times of the day.

A year ago when her surgeon first told her that it was stage 4 cancer and therefore incurable, he said that perhaps chemo could turn a life expectancy of "months into having months and months."  This was my initiation into the vague timelines given with terminal illness.  The surgeon was right - Mom has had many months and months, and overall it has been a wonderful year.  To use a similar analogy, I think some of the current options being considered could turn having just weeks into having weeks and weeks.  Of course, she and all of us want for time that includes a quality of life that makes it all worth it. Decisions are ahead - some will be made by mom, some will be made for her depending on what future evaluations determine.

After we got the bad news from the GI doctor about the partial blockage, there was a knock on the door and it was someone from the pastoral care team asking if we were interested in a prayer - and we said yes!  Mom is still finding comfort and strength in prayers - and in sunsets.  She gets out of bed to take pictures of the sunset she sees from her hospital window.

Thanks for your prayers.  We will keep you posted after what we learn on Friday and the weekend.

Update on Denise

Please keep mom in your prayers.  She is having a tough time right now.  She has been having bad abdominal pain for several weeks since being in Florida.  It reached such a high level of pain last Wednesday that she went to the emergency room and has been in the hospital since then.  She went through a battery of tests looking for an obstruction, new tumor masses, or infection.  What they did find among other things was abdominal fluid retention which could be a sign the cancer is more advanced than we thought.  Her doctor in Florida has advised mom to return to Rhode Island to be with her family and her team of Dana Farber doctors.  This news was a devastating surprise for mom; she felt like she was getting better and doing well all things considered.

However, mom is not being released from the hospital in Florida yet because mom is not able to move her bowels (likely due to pain medication but they looking for other causes) and because at certain times of the day the pain meds are not able to control her pain. We are not certain when she and dad will be leaving Florida - at the moment Patty and I are down here with them - but we hope we can fly them home within the next few days or within the week.  It will be very hard to mom and dad to leave her - they love it and they have wonderfully supportive friends down here.  But mom realizes she wants to spend time and treasure life, family and friends up back at the Golden Pond home.

I know you have many more questions - all of us in our family do too.  The doctors are being helpful but they are not able to give us a road map at the moment how exactly this is going to play out.  I will keep you posted when we know more, when she is going home to Rhode Island, when she might be able to visit or talk with people.

We are all so grateful for your love and support of mom and dad.

Love, Christiana, Katharine and Michael

PS She is not able to talk on the phone much - gets tired and has a very dry mouth at times.  If you were going to send her a letter, I would send it to the Rhode Island address:

979 Old Stafford Road
Tiverton, RI
02878