Celebrate The Good

(Scott writing)

Amy and I left Butler yesterday and headed back to Philadelphia and Detroit. Collectively this was the most time the two of us have been in Butler together with our family since the Summer between my Freshman and Sophomore years at Penn State. Mom said that she wishes we weren't there because of her sickness. We both agree. I suppose one benefit of cancer is bringing family together. 

And we've saw more of our family members this week than we have in a long time. We saw my grandparents every day, my aunt and uncles a few times. My cousins even made it up to see Mom though unfortunately Amy and I both missed them. 

And Mom has received wonderful support from her former colleagues and her friends. She needs it. Every bit of encouragement, positive words, prayers and hope gives her strength. 

We left Mom on a really good note. She came through her abdominal resection surgery very well. The surgery itself and post-op care have gone really well.

Mom would have been home while we were there if it weren't for a couple of issues...

The body's reaction to having a major surgical procedure can sometimes create a temporary heart issue called atrial fibrillation (A-Fib). The day after mom's surgery a routine heart check showed this, and as I noted previously, Mom was moved to a room where they could monitor her heart.  This showed that the minor A-Fib appears to be an on-going problem - not one that would put her in immediate danger, but one that the hospital and her doctors want to resolve before she leaves. That means tinkering with her medications to get the ratios just right to keep her heart and blood pumping correctly 24/7.
Without getting into too many details, knowing what we know about A-Fib now, although it has been difficult to see mom in the hospital for this long, we are really thankful that this issue is being taken care of. Because of the holiday, we didn't get to talk to the head cardiologist, Amy and I are hoping that when he/she talks to Dad today, he can have the doctor talk to us to explain exactly what their plan is for Mom and all of those details.

One thing I've learned (we've learned) through this experience is how important it is to know what medicines you've been prescribed, know exactly WHY you're taking them, and how important they are - can you go a day without it, or will you suffer unwanted consequences. It seems like a no-brainer, but pharmaceuticals can be really confusing, especially when there are multiples of them and they all seem to cover the same things. While in the hospital there were a couple of meds mom regularly takes that for whatever reason the hospital decided not to give her, then after we asked, they started them up and mom's condition dramatically improved.

The last few days mom has been doing really great. She's getting stronger, walking, doing all the things she needs to do. And while she's eating again, she's gone for so long without really eating that getting back into it has been a rough road for her stomach. The result is some serious heartburn. Today, the doctors did an endoscope that revealed some ulcers at the base of her esophagus / top of her stomach. While we aren't happy that mom has ulcers, we are thankful for this news as the condition is treatable and Mom should be able to continue to eat more and get stronger.  There is even a chance she may be released today, definitely by tomorrow.

So for now, every day has been better... we are hopeful that trend will continue. As is common in cancer stories - day by day... good days and bad days. Celebrate the good and push through the bad.

Please pray for as many good days as possible and keep sending good thoughts and words of encouragement. Mom and my family truly appreciate it.  And do that for the people you love too, those closest to you.

" Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Therefore as we have opportunity, let us do good to all people..." Galatians 6:9-10

Ups, downs, ins & hopefully outs

(Scott writing)

Today was a long day at the hospital.

Yesterday's surgery went better than any of us had expected. Prior to surgery mom was in probably her best mental state in weeks. She was alert and ready.

The actual surgery lasted nearly an hour, the time for her recovery from end of surgery to arriving in her room was much longer... probably three times as long. Once in the room she was groggy, but immediately asking for water, awake, but not in a lot of pain. She wanted a Pepsi so bad, but got only some ice-water soaked swabs.

This morning she was alert. Having the naso-gastric tube removed was a huge step. It had been in her nose and throat since Saturday. The doctor heard signs of movement in her bowels so she was allowed clear liquids and Jello. We were surprised, but happy about that.

Shortly after lunch, where mom had strawberry Jello and some sips of Pepsi, the hospitalist visited her to listen to her heart, which had an abnormal rhythm. This discovery rather quickly precipitated into a rushed effort to move mom from her big, cushy room in the Butler Memorial Hospital Tower to a cramped, shared room on the same floor in the "main section." A hallway spot instead of a window.

The move, into a wheelchair and out of the wheelchair into a bed was rough. Moments after being put in the new bed, Mom tossed up the Jello (which was a disturbing red color). It took them what seemed like forever to get her IV's re-set up, and to make her however comfortable as she could be.

Welcomed visits from Friends and Family today made things a little more chaotic. A trip to X-Ray didn't help much either. But what especially DID NOT help was the same hospitalist's innaccurate reading of the X-Rays when she announced to us all that mom had a blockage in her bowels and she couldn't eat or drink anything. I don't remember which of us said it, but someone finally said "WAIT - that's what the doctor removed yesterday!" To which she reiterated her statement, that it must have grown back in place again - or something like that.

The resulting few hours of serious worry were relieved when my mom's surgeon, Dr. Lee, came into the room after reviewing the same X-Rays and let us know that the tumors had NOT grown back and that the problem was the bowel needs to heal a little more before we jump back into Jello. Clear liquids approved for the moment. The obstruction is still gone, Mom's intestines just need a bit more time to "wake up" and start moving things along.

So today was a series of ups & downs.We are all hoping that her bowels properly wake up and tomorrow we'll have more ups than downs and we'll finally get some "outs" as things work well and push push push things along and out.

It takes a surgeon

(Scott)

Mom has been in the hospital since Saturday afternoon.

After more CT Scans and X-Rays we learned today that the blockage she has is in her large intestine and although they don't know for sure, the surgeon believes that the cause of the blockage is a cancerous tumor. The pain she has been in for many weeks, they believe, is primarily caused by this tumor blocking her intestine and causing everything to back up, making it difficult for mom to eat. 

After discussing her health with her oncologist and the surgeon, we have decided that surgery is our only option. Without it mom would not be able to eat and that would obviously mean the worst. So in the morning, my sister will drive to Butler from Philly and I will hit the Ohio Turnpike and head to the hospital to be there for her.

We are hopeful that this surgery will enable mom to start eating again, processing everything and be able to rest and get stronger. Once she is strong enough the doctors will be able to start treating the cancer more effectively. But she has to get stronger before they can begin that treatment.

Please send prayers and good thoughts for no complications, a smooth surgery, and lots of health for mom as she recovers.

Hospital Part 2

Scott writing

Today was a difficult day. 

I ran the Detroit Komen Race For The Cure this morning in celebration of Mom. 

It was emotional for me as I saw all of the survivors and the memorials and the support. I cried several times throughout the walk. (We walked instead of running today.)

Late in the day I talked to my Dad. 

After seeing the visiting nurse and a call to Mom's oncologist, Dad took her to the emergency room. She did not sleep well last night and then was not able to keep any food down today. I talked to her and she seemed groggy, and really down. She just wants to feel better. We all want her to feel better, to get better. 

A CT scan tonight showed a non-life threatening small obstruction in her bowels. They are keeping her in the hospital overnight to get her on an IV and restrict her food. 

Tomorrow her team of docs will review everything and decide on a course of action. 

We are optimistic they can help her get through this moment. Where we go from there is unknown. 

I've decided that I can't dwell in the speculation of things unknown. I can't live in the place of the past. I have to take each moment and believe in the best to come. And I pray that God will steady her course and give us the best possible answers and strength. 

I hope you will do the same. 

Mom's Story (so far)

Because many people will want to know how she's doing, my sister and I have created this blog to keep our friends and family updated on my mom, Mary's, cancer treatment and recovery. Looking back, this is something I wish we had done at the beginning of this journey - but here we are... so let's begin.

Mom’s Cancer Journey (So Far)

This is Scott writing (Amy editing)

Five years ago this fall we got word that my mom had breast cancer. After a few months, and many tests and doctor’s visits, our entire family gathered at McGee Women’s Hospital in Pittsburgh for my mom’s surgery.

The surgery went alright. I remember sitting in the waiting room feeling like this wasn’t a cancer surgery center as much as it was a cancer service center. Each of the day’s surgeries was posted on electronic boards around the floor with the patient’s status, location and stage of surgery. It was like an airport, but instead of arrivals and departures, it was pre- and post-op listings. “Attention hospital guests, now arriving in Room 221, Mavis Merica after a successful lumpectomy.”

A lot of women were having a lot of surgical procedures.

One thing that I’ve learned in this process, breast cancer is common. And more often, cancer is even more common. Everyone has either had it or had someone close to them affected by it. Some of us get the joy of having it and being affected by it over and over and over.

We should all be in our best shape possible… when cancer arrives, being healthy gives you the best odds of defeating it or surviving as long as possible in the best state possible. Cancer is indiscriminate – it doesn’t care if you’re young, old, in shape or out of shape. It happens when it happens and you have to deal with it. Other factors then play into your recoveries and treatments… how strong is your body? Can you heal quickly from a major surgery, or a minor one? Can you hold up against the intensity of a heavy-duty drug or will you need to take the easy road with a longer treatment period?  And, in some ways most importantly, are you mentally strong enough to handle hard truth, difficult news and the inevitable difficult questions.

After the initial surgery, mom’s health history (particularly her diabetes) made the recovery process longer than her doctors expected.  Finding cancer cells in her lymph nodes was the rotten cherry on top of everything.

She had to go through chemo, and that was hard. A few days after each treatment, mom would get very sick. Her hair fell out. When it was done, and a PET scan showed no cancer we were happy for her. She had made it through.

But she had a long road.

She began a series of anti-cancer hormone therapy (standard for women in her position). Some of those drugs made her feel not-so-good. Some of them did nothing. But about a year after chemo was over, a spot showed up on her hip, not big, not aggressive and mom did not feel it at all. Because of that, they changed up her drugs which lead to some oral/teeth issues – somewhat common in post-chemo cancer treatment.

One thing that a lot of younger folk don’t realize (I did not) is that Medicare doesn’t cover Dental. And with all of the changes in retirement plans to save costs, Dental has been removed from many Senior’s healthcare plans. So when my mom began developing teeth and gum issues due to the treatments, she had to pay for all of her dental care out of pocket. Even though it was directly caused by her cancer drugs. So… they do what they have always done. When you don’t have a lot of money you pay for the most basic - cover the immediate need and worry about the future later.

And then the teeth infections continued and her pain got worse and the dentist didn’t talk to or make the connection to the oncologist (we will never really know 100% how it went down, and that’s frustrating). And so, without dental insurance, the most economical thing for mom to do was to have her teeth removed. ALL OF THEM.

Painful.

Even more painful when we learned that the anti-cancer drug mom was on causes jawbone issues, and removing her teeth caused her jawbone, already in rough shape from the cancer meds, to begin to deteriorate and cut up through her gums.

And the Dentist blamed my mom for not telling him about one of the treatments she was receiving that could cause problems with the jawbone. Why didn’t he have any responsibility to check her medical information?

Then, the gums took longer to heal (like the cancer surgery); the dentist made my folks pay up front for false teeth and then dragged his heels on getting them made for months.

Have I mentioned yet that if I saw this guy on the street I would punch him in the face?

They don’t fit. After nearly 6 months of not having teeth, the false teeth that took so long to make because he wanted “to get them right” don’t fit. PUNCH PUNCH PUNCH.

Butler Family Dental. Avoid them at all costs. They have played a part in deteriorating my mom’s quality of life.

Today, Mom weighs less than I did in high school. Without a good set of teeth, it’s been hard for her to eat and so she has lost a lot of weight.

Which brings me to this Easter.

I went to visit my folks for Easter because Mom was having a hard time being sick. She had gotten the flu that was going around and because a recent PET scan showed another small spot, this time on her back, her oncologist decided to try a new anti-cancer/hormone drug.  We had a suspicion that mom’s sickness was both the flu and related to that pill. 

Mom took one of the pills on Saturday afternoon and by Saturday evening before Easter she was the sickest, scariest I had ever seen. Tired, disoriented, confused, in pain and just not able to focus.  It was pretty scary. One good thing, that made her sleep.

Since her Chemo treatments, mom has not been able to sleep normally. Up and down, hot and cold. Her sleep habits have been so erratic that she has taken to sleeping on the couch rather than in their bed. 

But now, she slept, all night and slept in on Easter Sunday. So that morning she did not take a pill and by the time we went to brunch she had gotten remarkably better. By the end of the day she was totally back to what had been normal since she had her teeth pulled.

I left feeling that we had determined the medicine wasn’t good, and things would be better for a while.

But it didn’t take very long for things to get worse. In an attempt to help herself, mom not only stopped taking her cancer medicine, she stopped taking all of her medicine for a week or so. And then she disappeared from Facebook and emails. Calls with mom were awkward and a little odd, she didn’t seem to be very responsive and everything was “Fine.” She would ask me multiple times how I was doing.  After my sister Amy told me mom had told her about not taking her pills, I called mom after one of her important doctor’s appointments.

She could not remember if she had gone to the doctor or not. This was the first indication we had that something was wrong. So Amy made plans to visit mom the following weekend. Each time Amy called, mom had forgotten that she was coming to visit. Then when Amy arrived, not only had mom forgotten she was coming, she never told our Dad. A rapidly escalating series of events unfolded after Amy arrived that convinced my Dad what Amy and I knew already – Mom had lost her short term memory which gave all of us a startling amount of fear and speculation as to what had happened. Brain cancer, Dementia, Stroke…??? 

Mom had an appointment on Monday, May 4. Dad called off his work for the week and he and Amy forced mom to go see her oncologist. Mom did not want to go. They arrived and Mom’s cancer doctor was waiting for them. We quickly learned that Mom had missed two appointments she told us she had gone to, and most discouraging – her most recent CT scan showed that she had cancer diffused throughout her abdomen. Based on her mental condition, mom was admitted to Butler Memorial Hospital for tests and observation.

A series of tests quickly concluded that mom’s brain was fine and there was no cancer or infection, no blood clots, or issues in her brain to cause concern. For the most part her blood work was relatively normal – the only thing that was abnormal was slightly low Vitamin B levels.  By this time, Mom was complaining about stomach pain and so they began a pain management plan with lots of fluids. Slowly mom’s mental awareness began to come back.

Amy and Dad stayed with mom till visiting hours were over on Monday, then during the day on Tuesday and Wednesday. I had obligations that kept me in Detroit through Wednesday night when I drove through the night to go with them to the hospital Thursday morning. By Wednesday mom was sounding back to herself before going to the hospital. An X-Ray of mom’s abdomen showed that her stomach pain was due to the strands of cancer resting on the outside of her stomach and small intestine.

So what is diffuse abdominal cancer? On Thursday, my mom’s doctor explained it in detail to us – the cancer mom has in her abdomen is not in one specific organ, but rather in the lining of the abdomen – the membrane/endometrium. Like a cotton ball that’s pulled apart, the cancer is stranding through the abdomen. The greatest concern with this type of cancer is that the strands will eventually cause a blockage. They held mom in the hospital until she was able to keep her food down and have a successful bowel movement. Both of those happened on Thursday and by Friday morning she was doing really well.

The drive home for mom was rough, she got sick on the way and then again at home. For a minute, we were worried that she was drifting back into the pre-hospital state. But then we made sure she was drinking water, taking her medications and eating as much as she could. Since then she’s been getting better. The pain medicine is working, the anti-nausea medicine is working and mom is getting good rest.

NOW

Here is where we are now. We have accepted that mom’s cancer is serious. We all think that when the doctor called her with the news about the cancer returning, mom “checked out.” She got scared and sort of gave up on remembering, on trying. Now that she has learned that we’re all here for her and that she can control the pain and can eat, if she works at it, and that she has medicine for the nausea, she is getting much better. We’ve given her a firm schedule of all of her medications, Dad is officially retiring so that he can take her to every appointment and be at home full time to make sure she’s staying hydrated, eating well, and helping her when she needs it. 

On Monday we had a scared, pessimistic outlook. Today we are more optimistic. We know that there are still more difficult conversations to have, more upsetting times ahead, and the inevitable to plan for. But we are positive that we have made it through a rough moment, and have learned a lot about what mom needs for now.

Amy and I will be visiting more often, and checking in with her every day. Dad is taking more responsibility for mom’s care and their combined welfare.

And a lot of people have offered help, have reached out, have been incredibly supportive and have offered unexpected prayer and hope. For that we are very thankful. Mom needs to know you are out there. If you live nearby, call and stop by. Give her a call, reach out to say hello, be in touch with her when you can. And perhaps Amy or I will be there too – we’ll be there more often than we have in the past. And we love each and every one of you who cares about us and my Mom. Keep praying, keep hoping, and please keep reaching out.

Scott, Amy, Speed & Mary