Category: Esophageal Cancer

Knowing that my wife’s mortality is staring both of us in the face, we knew that this year would be the last Valentine’s Day that we would ever share. About two weeks prior, we had tried to find a nice place for a Valentine’s meal but came up dry. In 22 years of marriage, we had never gone to a nice restaurant for dinner on February 14^th. As often happened in the past, I had decided to buy a nice steak and the trimmings and hope for dinner on another night. It was disappointing.

However, two days prior, we received a call saying that the best place in town, Tavern at the Lodge, had a cancellation. We were grateful and really excited for this unexpected gift. Tavern was offering a seven-course meal for the evening.

We arrived shortly after 5 PM. Meal service was scheduled to begin at 5:30. We got the table next to the fireplace. I tried all the dishes as they came out. Many I have never had before and likely would never order again. The meal also came with two glasses of wine. One was a very dry white and the other a dry red. I didn’t like either one. Below are a few photos of the meal.

I think we only got pictures for five of the seven items. I don’t claim to be as thorough as Johnnie Does.

After the meal, we stared across the table at each other. We both knew this was the last Valentine’s dinner that we would share together. We both started crying; something I did off and on for about the next 20 minutes. Finally, it was my turn to pay the bill. Once that was done, we went home.

Also in February were more medical procedures including additional chemo and immunotherapy.

The cyst that regrew was removed from my wife’s back. This time the doctor thinks he got it all.

Toward the end of the month was the placement of an esophageal stint. What a horrible thing to do to someone. My wife is suffering terribly as a result of the stint. Her body aches all over and she has constant nausea. The stint is supposed to force her esophagus open to 18 millimeters (50 percent more than it can be stretched any other way.) Oh, and it’s about 5 inches long. How would you like that object surgically placed in your throat? She is experiencing lots of coughing fits as a result. It also doesn’t help that she has more fluid in the plenum cavity in her chest. You know my wife is sick when she is skipping church and shunning visitors.

CT and PET scans in March will likely direct what future treatment that she receives.

Oh, lastly, in my previous post, the news that I posted seemed rather dire. At our last meeting with the Oncologist, I asked about the write-up from the other doctor that I had previously posted about. The Oncologist was dismissive of the conclusions in that report. In short, his comments were thus, one conclusion would require surgery to confirm, and the other is premature but might be supported once the next PET scan was done. He didn’t really say “no” to what was in the report, more that it was just too early to go there yet.

These last few weeks have been horrible, informative, and whatever the heck is the opposite of fun. I’m frankly a little depressed and discouraged as I hope to explain below.

The fluid in the lungs is back. It is not as bad as it was before it was drained in the hospital, but it is definitely returning. Even a dumb guy like me could clearly see the horizontal line showing the liquid level on the X-ray a few days ago. The pathology on the liquid came back as positive for cancer which was no surprise.

Today was yet another CT scan of the chest. I think this is the third one in two weeks. It is clear to me that the doctors are expecting to find cancer in the tissue surrounding the chest cavity. The write-up of the CT scan seemed to confirm that without coming right out and saying it.

Below are some of the medical terms used in the write-up

Ill defined/irregular pulmonary nodules

Nodules in the lungs are not necessarily cancer but could be. Given everything else happening, nobody is even suggesting that they be tested. It’s pointless.

Multiple enlarged mediastinal lymph nodes

When the lymph nodes in the mediastinum become enlarged, it is called mediastinal lymphadenopathy. Mediastinal lymph node enlargement can occur from a wide range of diseases, either on its own or in association with other lung conditions. It usually stays less than 10 mm in diameter.

What Does Mediastinal Lymphadenopathy Mean?

Mediastinal lymph nodes are typically the first ones that cancer cells from the lungs will trap, providing doctors have the means to know if cancer is spreading.

Under the heading Impressions

Recurrent pleural collection

Pleural effusion, which some people call “water on the lungs,” is the buildup of excess fluid between the layers of the pleura outside your lungs. The pleura are thin membranes that line your lungs and the inside of your chest cavity.

Pleural effusion

Interlobular septal thickening and may be due to edema or lymphangitic carcinomatosis

Interlobular septal thickening is commonly seen in patients with interstitial lung disease. On HRCT, numerous clearly visible septal lines usually indicates the presence of some interstitial abnormality. Septal thickening can be definied as being either smooth, nodular or irregular and each likely represents a different pathologic process.

INTERLOBULAR SEPTAL THICKENING

(The above URL links to an example of Interlobular septal thickening.)

Lymphangitis carcinomatosis is the malignant infiltration and inflammation of lymphatic vessels secondary to the metastatic spread of malignancy from a primary site. The carcinomatous infiltration of the lymphatic vessels almost always occurs in the pulmonary interstitial lymphatics

Lymphangitic Carcinomatosis

The quotes below are in the linked study under the heading “Prognosis”

Diagnosis of pulmonary lymphangitic carcinomatosis is considered to represent end-stage malignancy, with the life expectancy being about six months.

Lymphangitic Carcinomatosis

Bruce et al. observed death within three months of presentation of respiratory symptoms in half of the patients, and Zhang et al. noted that almost 72% of the patients died within seven months of presentation.

Folks, this diagnosis is eerily similar to the cancer that took out my wife’s mother about ten years ago. My wife’s disease is above the diaphragm while her mother’s cancer was below. Both are lethal.

However, this is not all the cancer news for the week.

As stated in a previous post, the cancerous cyst that was removed in November grew back in short order and is now larger than its predecessor. It was supposed to be removed this week via an outpatient procedure but after taking one look at it, the doctor said it was too big and would need to be removed in the hospital operating room. This is scheduled for next week.

Also, it has been agreed that my wife will be getting a stint in her esophagus at the end of the month. This is intended to hold her esophagus open to the max that it currently opens which is about 12 millimeters. Hopefully this will allow her to eat more solid types of food. Poached eggs are a rather boring breakfast every day.

The thought that my wife could have as little as three months is very disturbing. I thought we would have more time together. What is happening to her respiratory system looks to be the beginning of a cascading failure of bodily systems.

I feel especially sad for the children. They kind of know what’s going to happen to their mother but…

Yesterday (Tuesday Jan 21^st), my wife had another PET Scan. It is the first one in 2025. Her last was back in November. The results were even more dismal than either of us expected.

This PET scan was using a newer machine, and the results were written by a different doctor. The scan report didn’t give the size of tumors but only the SUV intensity. (Only three measurements were given. They will appear later in this post.)

Before proceeding, I will recap what an SUV reading is.

A higher SUV may indicate increased metabolic activity, which could be due to various factors, including inflammation, infection, or cancerous growths. Conversely, a lower SUV could indicate less metabolic activity. Generally speaking, metabolic activity is considered:

• “Low intensity” at <5 SUV

• “Moderate” at 5-10 SUV

• “Intense” at 10-15 SUV

• “Very intense” at >15 SUV

How to Read a PET Scan Report: Decoding Common Terminology

Going into this we knew there were five tumors. The four originals that were on my wife’s neck and upper chest plus the one on her back which had been removed and had promptly grown back in a matter of weeks. If the PET scan had stopped here, I would not be blogging on this today; however…

The physician’s assistant showed us the scan as a whole body, front-to-back, but did not zoom in on any areas. By viewing the new scan, we knew there was at least one new tumor visible, but we were advised to wait for the results.

I will now go through the results of the scan. The report generally goes from head to toe.

Four tumors that already had chemo and radiation:

1 Right supraclavicular nodal             SUV 3.8

2 Right superior paraesophageal SUV 4.6

3 Right posterior chest wall/pleural SUV 8.2

4 Focal uptake right lateral seventh and eighth ribs SUV 5.8

Cyst that regrew on her back after removal:

5 Posterior superficial subcutaneous nodule at level of eleventh rib SUV 8.6

(The cyst on her back was measured at 2 cm traverse (horizontal))

Next, the scan found an additional six tumors.

All six tumors were in what I would describe as the pelvic area.

6 Small deep subcutaneous module overlaying right superior gluteal region SUV 8.3

7 Deep aspect right inferior gluteal muscles SUV 12.0

8 Soft tissue just medial to superior left acetabulum SUV 6.6

9 Focal left gluteal muscle SUV 4.2

10 Focal uptake left greater trochanter SUV 5.4

11 Focal uptake proximal right femur just below the less trochanter SUV 11.0

As the infomercial says, “And that’s not all” because, sadly, there was more.

In my wife’s chest the scan found loculated pleural fluid collection in her posterior right chest measuring 7.4 v 5.5 cm

Loculated pleural effusion refers to the accumulation of fluid in the pleural space, the thin space between the lung and the chest wall. Unlike simple pleural effusion, where fluid accumulates uniformly, loculated effusion involves the formation of pockets or compartments within the pleural space.

Loculated Pleural Effusion

The nodule right superior gluteal region was 9 mm.

Anatomy Terms

Superior = above

Inferior = below

Traverse = horizontal

Subcutaneous = deepest skin layer

gluteal region = external (outside) pelvic cavity

nodule = abnormal group of cells (think lump)

In two months, we went from five to eleven tumors. The cancer has spread to skin, muscle, and bone tissues. The fluid in the lungs is likely the result of the cancer being in the lymphatic system of my wife’s neck and chest. A web search seems to indicate that if a certain quantity of fluid accumulates that it will need to be drained. Given her history, the fluid is likely full of bad stuff.

Following the PET scan, we were called in on Friday (Jan 24^th), for a CT scan. This scan was combined with a swallow test to see if fluid was leaking from the esophagus into the chest cavity. Thankfully, this result was negative.

However, the next morning, my wife began to cough up blood. This continued all weekend and on Monday morning, the office of her oncologist was contacted. We were instructed to go to the local emergency room for treatment.

My wife was admitted to the hospital. After poking and prodding her, the doctors decided to put a drain into her chest cavity and remove the pocket of fluid in her chest. They put a hole about 1/8 inch into the right side of her back. The hose went between her ribs. The portion of the hose inside of her was about six inches long. It was covered with a sizable dressing. This hose was connected to a much larger one that emptied into a rectangular box. The holding box had cascading sections which went from right to left. Each section was marked with lines to measure the amount of fluid discharged from the drain. The unit of measurement was cubic centimeters. In addition to the collection device, there was about another 160 CC’s that went to the lab for examination.

Once the fluid was removed, she could breathe easier, and she stopped coughing up blood. After two days, the chest tube was removed, and she was sent home. It was never determined why she was coughing up blood. There is a waiting list to test her for possible reasons. We are waiting to schedule an outpatient exam to learn more.

Meanwhile next week is removal of the cancerous cyst on her back (again) and more chemo.

Sees like the hits just keep coming.

Sometimes, when your reality and expectations align, it’s not a good thing. Yes, I know that is contrary to what our culture teaches, but do you still believe the Disney lie that following your heart is a good thing? 2025 looks to be the long slow plodding walk thru the valley of the shadow of death.

Let me explain.

The meeting that my wife and I had with her oncologist a few days ago was depressing. She finally asked the “big question;” namely, “What is my prognosis?”

The doctor’s response was that she had a fifty percent chance of living ten … to twelve months. He initially stopped after saying ten and then added the “to twelve months” after a brief pause. I felt that the subtext of his answer was buckle up buttercup, the water is about to get really rough.

This reply was followed by a discussion of chemotherapy, immunotherapy, or doing nothing. I thought these were the three choices, but they managed to decide on a fourth option. My wife will begin to do both chemo and immunotherapies simultaneously starting next Tuesday. The chemo will be a slightly different cocktail of drugs than last time, the major side effect of this round will be diarrhea. Why she thinks that side effect is better than cold sensitivity is a mystery to me. I’m picturing her having to be within line-of-sight of the nearest toilet and potential dehydration as a horrible way to live.

My wife wants to go out swinging, which is a good trait and one I expect from an upbeat and optimistic person. I kind of think the quantity versus quality-of-life question should have been asked but it wasn’t. I can’t help but wonder if the cure is worse than the disease. The die is now cast and our course plotted for the next few months.

Oh, lastly my mom is down to 88 pounds and not doing well. I may be trekking to the once golden state more times than I want is year to say farewell to family members.

Well, the big PET scan and meeting with the oncologist finally happened. It was somewhat of a letdown. The cancer, of course, looks to be still present (or the damaged tissue from it) but the tumors have shrunk. Her ability to breathe is improved but eating anything solid at this point is just not possible. As previously stated, the tumors are inoperable. When meeting with the doctor, he made a matter of fact comment that the radiation/chemotherapy only had about a twenty-five percent chance to be effective.

It got even better. It turns out that the PET scan can’t check to see if the blood clots in my wife’s lungs are still there. As things stand now, there are no plans to ever check to see if they have gone. They are just going to keep her on blood thinners.

She is slated to have a throat scan later in the month. For this procedure, they put her under (sedated) and then will put a camera down her throat. If anything looks worthwhile, then it will be biopsied. Her remaining esophagus was lit up on the PET scan and the report said her SUV (standardized uptake value) reading was at 9.5. This is indicative of moderate cancer activity and a short prognosis of life expectancy.

Based on the throat scan results, a monitoring schedule will be established. Once again when this was being discussed palliative care was mentioned. The doctor also mentioned that further chemo or immunotherapy might be in her future.

My wife has lost about 40 pounds from the current bout with cancer. Lately, she has upped her calorie intake to about 1,000 per day. Food is still via a spoon or straw. The sensitivity to cold still persists even after about a month of being off chemo drugs so all food must be room temperature or warmer. It seems like the opening of her esophagus is still small, but the pain and discomfort of swallowing food has decreased. At her last throat scan, it was reported that the maximum that the esophagus would open was 2 cm.

We are both looking forward to having all the kids here for Christmas. We know there is a good chance that this may be the last time we spend the holidays together.

I enjoy helping my wife deal with her illness, but I really hate to see her suffering. She always has a smile on her face and a positive attitude. Some time next year, I expect to start hearing about hospice care. I hope that day is far off. More updates as things develop.

Chemo didn’t happen last week because the white cell count was too low. We are planning to try again tomorrow. If the white cells are again too low, then I think we are done with chemo.

Meanwhile my wife says she has lost 30 pounds since being diagnosed with her cancer again. Previously, I told her that I expect her to lose 50 to 60 lbs. before this “treatment” is over.

Eating is literally a pain. She has to take medicine just to allow her to eat. Foods (more correctly liquid substances that she eats in place of food) cause pain when she swallows them, and the pain continues all the way to her stomach. The amount of distress that she endures is amazing. She is happy and positive even in the face of the difficulties that she is experiencing. A side effect of the medicine is that she is sleeping much of the day. She is also weak.

I think she is beat up and broken and part of me hopes the chemo is over. I think we have crossed the line between medical care and torture, at this point it is simultaneously both.

Her radiation burns are slowly healing. The two open sores are healing up and get new dressings on them each day. The discolored skin is still visible but improving. You just can’t help but wonder what the tissue inside her body looks like if the outside is this messed-up.

As October begins, my wife is struggling to eat. Most of her nutrition is via a plastic soda straw. She also has severe burns from the radiation treatment. These burns cover an area between her shoulders and from her neck to her arm pits. Her skin in this area varies between being brown or black (dark in color). Near her right collar bone are two large sores about the size of silver dollars. She is using a pill crushing device to pulverize her medicine because it hurts too much to swallow any capsules. She also has been given liquid versions of some other things she needs to take. Nasea is her constant companion.

She is in good spirits as always, however; this past week she did not experience the rebound that had been the case between weeks of chemotherapy. This week will be yet another round of treatment.

Meanwhile, the meeting with the radiologist last week promised some degree of relief in the future. Hope that’s the case.

Lots of waiting in my immediate future.

Note: My second post for August was never completed so here’s the update covering the last few weeks.

This week my wife completed her 25 radiation treatments. She was told that there will be two more chemo treatments in October. This is in addition to the previously scheduled five that she has had. Chemo weeks are full of nausea, vomiting, dry heaves, lack of sleep and of course breathing difficulty.

The results of the treatment thus far is that she is on essentially a liquid diet. Nope, ice cream is not on the menu. A known side effect of her chemo is that she is hypersensitive to cold. Everything must be at room temperature or slightly warmer. Many foods don’t taste the same.

She has lost close to thirty pounds thus far, even though she is trying to eat high calorie foods.

Yesterday for example, it took about five minutes to successfully swallow a pill that was about the size of 1/4^th of an M & M candy.

I have lost count of the number of medical people recommending that she get a feeding tube. She is not interested.

The radiation doc has said that in a few weeks, her esophagus will begin to work better.

Mid to late November she will have another set of scans to see what impact her treatment has had on the cancer.

It has been a blessing to have my father-in-law here for the last several weeks. Sadly, this is not his first rodeo with seeing a loved one slowly fade away.

My parents popped in one weekend and their visit was probably the best one we’ve had with them in our twenty plus years of marriage. Miracles do come from such tragedy.

Our church here has been very supportive as have others in the community.

On days when her dad drives her for treatment, I am expected to continue working on the house. I have been painting, installing flooring, door and window trim, and other things as needed. The craft room is up and running and I also have a shiny new desk upstairs for computer work. Soon my toolbox will be delivered and then I can get my stuff in the garage organized.

The first week of chemo is now over. As before, the second day after infusion was the worst. Thankfully we have the next week off.

On deck are 25 treatments of radiation that run concurrent with more chemotherapy. Yep, five days a week for five weeks. Radiology is now part of the treatment regime. Our consultation was moved up by a week. The finding was that radiation would be possible, but surgery was not. This is the second doctor to say that surgery is not possible in this case.

The folks at the church have been very kind to us with all that is going on.

Our workers, Joe, Josh, and Zack are all doing their best to help us have a place to house guests. Up next is paint, tiling, and building the Murphy bed. The electrician and HVAC test guy are expected later in the week.

My wife also has been subjected to a bunch of new tests. Some of the results are beyond our comprehension as they involve proteins and genetics, but a new CT scan showed 10 millimeters (one centimeter) of grown in her largest tumor in two weeks (July 30 to August 14). That is about four tenths of an inch. The growth in her neck is now 3.8 cm x 2.6 cm; no wonder her breathing and food consumption has gotten so difficult. Also, tumors are wrapped around arteries branching from her heart. “… encasement of the right brachiocephalic artery as well as proximal right subclavian and right common cartid arteries which is newly apparent.”

Tuesday chemo and radiation continues …