Category: Esophageal Cancer

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 …

In something akin to a bad version of Groundhog Day, my wife is getting back on the chemo treatment routine. Friday, the port will again be installed in her chest. Tuesday, she starts chemo. It’s a yucky one with a pump to administer the drugs over several days. Once some test results come back, the drug cocktail will be adjusted.

We also get a consult with a radiology guy in about two weeks. Whether she is even able to get radiation is yet to be decided.

As for staging, per her doctor, she could be classified as either stage four or three, depending on which definition you wish to use.

The oncologist said that the cancer is incurable and mentioned palliative care. He said she may have one to two years depending on what they can do for her. Sorry, but her breathing is getting more difficult and until something changes with the large tumor in her throat, she is at risk (in my opinion). Oh, the necropsy in her large tumor is due to the tumor growing so quickly that parts of it don’t have sufficient oxygen, hence tissue is dying.

As a result of what is happening, the one-week trip to Canada in a month is cancelled; however, her dad is still driving up here.

The garage will be mostly sheet rocked by close of business on Friday. Also, parts of it have already been taped. Next week it should be possible to paint parts of the garage. The bathroom is also progressing and will also be ready for tiling in a few more days. I finished wiring for security cameras today and installed a few exterior lights. I’m glad we found some help to get the place livable before her dad arrives.

More updates as the situation warrants.

Last week was the PET scan. We had the results within 45 minutes of leaving the testing facility. In addition to the two tumors that we knew about from the recent CT scan, two more were found in my wife’s upper chest area. One is located near her collar bone and the other in the bronchial area. Per doctor Google, both these tumors are frequently associated with lung cancer.

Both tumors in her neck were measured larger than when the CT scan was done. Whether this is accurate or just due to different techs reading tests by different methods is unknown. The large tumor is now 2.6 cm and in the tracheal esophageal groove. This is the area immediately below the valve in your throat (epiglottis) that directs air to your lungs and food to your stomach. The groove is in between the trachea and the esophagus. This is the tumor that has changed my wife’s voice and also limits her ability to breathe. She also has some trouble swallowing liquids.

The second tumor is in the supraclavicular lymph node

The lymphatic fluid from the head and neck regions is filtered by the lymph nodes in the neck area. Specific to the right supraclavicular lymph node is the drainage of the mid-section of the chest, esophagus, and lungs, …

Supraclavicular lymph nodes

The third tumor is in the subcarinal lymph node. This is area where the airway branches into left and right lungs.

The fourth tumor is in the prevascular lymph node.

The prevascular lymph nodes (3A) are all located behind the sternum and anterior to the superior vena cava and left carotid artery.

Anatomy, Thorax, Mediastinal Lymph Nodes

The first two tumors are in the neck and the other two are in the upper thorax. As you can see most are in and around the respiratory system. The two new tumors are often associated with lung cancer.

Earlier this year (February), the CT scan of her chest was clear (the neck was not scanned by the last test).

Biopsies are scheduled for later this week.

It is clear to me that radiation is off the table, leaving chemotherapy as possible treatment. Surgery on her neck is not likely so are we really gonna fix anything or just make her comfortable?

After Biopsy

The biopsy came back as expected; namely, the esophageal cancer has returned. The report featured two phrases of concern. The first was “moderately to poorly differentiated adenocarcinoma” and the second “adenocarcinomas from the gastrointestinal tract and lung.”

This roughly translates to the cancer is aggressive and suggests that it is taking up residence in the lungs. The lung diagnosis is consistent with the two new lymph nodes and her symptoms including shortness of breath.

After consulting doctor Google and my few friends in and around the medical field, this is my take on the situation, my wife has stage four cancer and has four to six months left on the planet. I sense that other folks feel that way too, but they are leaving the bad news delivery for the doctor to give to us next week.

Palliative care (a medicine or form of medical care that relieves symptoms without dealing with the cause of the condition) looks to be the likely offering from the doctor.

I will update as necessary.

On July 9^th, it would be three years since my wife was originally diagnosed with Esophageal Cancer. As you might expect from this update, something is wrong.

A few days ago, July 5^th, she had a CT scan and we learned that she has two cancerous tumors in her neck.

Our first indication that something was amiss was toward the end of April when, with no explanation, the pitch of my wife’s voice changed. I would describe the change as making her voice “muddy” and similar to the classic Mickey Mouse. It also has significantly decreased in volume. She was a voice major in college and when she can’t sing, then it’s a problem. She just sang at Carnegie Hall in February and two months later she couldn’t sing anything. Big red flag.

In addition to the changes in her voice, she now is having difficulty breathing after doing mild exercise or working around the house. This symptom is scarier than the voice issue to me.

Modern medicine being what it is, she couldn’t see an ear, nose, and throat doctor without a referral. He ran a scope through her nose and down her throat and found that the right vocal cord was not working correctly. A week later, we had to take a road trip to the big city to get a CT scan.

Folks, after leaving the scan, we went to one store to shop and then stopped for a cold drink at Wendy’s. We weren’t even out of town on our return trip and had the results. Elapse time was about an hour and a half.

My wife has two tumors, the larger is 2.4 cm (about an inch) and the other is 1.2 cm (about 3/8 of an inch). One tumor is described as “necrotic mass or lymph node” and the other as “metastatic lymph nodes”. These are in the lower neck and in the area of the esophagus and trachea.

Here’s what the internet says.

necrotic mass or lymph node

Necrotic lymph nodes refer to lymph nodes that have undergone necrosis, which means that the tissue in the lymph node has died due to a lack of blood supply or severe infection. This condition can be an indicator of various underlying health issues, ranging from infections to malignancies.

Necrotic Lymph Node

Furthermore, certain types of cancers, such as lymphoma or metastatic cancer, can also lead to necrosis of the lymph nodes as the disease progresses.

Metastatic cancer is the same description as the original Esophageal Cancer three years ago.

metastatic lymph nodes

Nodal metastases refer to the spread of cancer cells from the primary tumor to nearby lymph nodes. Lymph nodes act as filters in the lymphatic system, trapping foreign substances, including cancer cells. When cancer cells invade these nodes, they can multiply, leading to the formation of secondary tumors within the lymph nodes.

Nodal Metastases

We have been assured that a “STAT” order has been placed for a PET scan and biopsy. We anticipate more tests in the next week.

Given all of the structures and functions of the human neck, we know there is a real possibility that surgery will not be an option. Also, has this cancer spread anywhere else? To us it appears that this round of cancer is fast growing.

I will provide further updates, but a few prayers would be in order. Thanks.

I haven’t written about my wife’s struggle with cancer lately. I wanted to provide an update for at least two reasons, first, it’s been over a year since her diagnosis and secondly, she just spent a week in the hospital because of cancer related reasons.

At the end of August, the wife and I went to our house in Idaho. Our mission was to frame interior walls and get rough electrical and plumbing figured out. I did get both bathrooms framed as well as some other walls, but it took way more time than I thought. I found that the house framing was not ready for insulation and covering the walls. Nailing edges were not installed anywhere and that took lots of additional cutting and attaching.

The air compressor that we bought at Home Depot was broken when it came out of the box. As a result, we had to return it and buy a new one. I decided to try a different brand. Word to the wise—skip the Dewalt 6-gallon compressor. Getting supplies was a slow process, especially, when mama decided on a major design change in the midst of the build.

Partway thru the week, my wife got sick. Typically, she throws-up about once a week but this time was different. She usually is her happy-go-lucky self by morning but not this time. She had a fever and continued to barf up everything, including water. The next night she woke me up because she was shaking the bed. She complained of being cold and couldn’t stop trembling. I gave her my half of the blankets on the bed. I offered to take her to the Emergency Room two blocks away, but she refused. Her shaking lasted for about 45 minutes before subsiding.

She spent the next day in bed. It was clear that as it related to construction, I was on my own. The following day I strongly suggested that we skip the remainder of our vacation and go home. It was only one day early but she agreed. I drove the thousand miles from our place in Idaho to California in one day. I don’t think I did more than two potty stops on the whole trip. My wife was miserable and did most of the trip with ice packs on her head.

That night we showered and went to bed hoping tomorrow would be better. Sadly, that was not to be. The next day was Labor Day. By that evening, I finally got my wife to let me take her to the hospital.

She had three major issues, she was dehydrated, vomiting, and had a horrible headache. Just so you know, it seems nobody wants to go to the Emergency Room on a three-day weekend. We were seen almost immediately. OK, technically she was seen, I was exiled because I didn’t have a Covid vaccine card. Newsom has never released his grip on the medical community.

After sitting outside for a while, I read the Covid rules. It said that if I did a home test that I could go see her. I verified this with security, and they said my understanding was correct. Trying to find a Covid test at nine o’clock at night on a holiday is really a booger. I had to go four places to find one. Believe it or not, I ended up at Safeway in Elk Grove. They were the only place that I could find them. Shortly after 11 PM, I had two in hand and headed to the hospital.

Oh, just as I was walking out the door of Safeway, the ER doctor offered me a Covid test so I could be with my wife.

My wife spent a horrible week in the hospital. The IV solution took care of the dehydration. The docs thought she had “aspiration pneumonia” and put her on antibiotics. She has shadows in her lungs, and signs of an infection. Everyone assumed it was because her vomiting had been inhaled. The lab tests showed she did have an infection, but the white cell count didn’t improve as a result of her treatment. In fact, her blood chemistry was an indescribable mess. All sorts of seemingly unrelated things were low. Towards the end of her stay, the doctors decided the only logical thing was that these symptoms were the result of her immunotherapy.

Let me explain. Immunotherapy is supposed to encourage your body to fight-off infections. Since it is administered one per month, it must be stored in your body and released slowly over time. This means it’s probably related to your liver. When you get sick, your body can release a large quantity of the stuff into your system and overload your body’s systems. This appears to be what happened.

My wife has been out of the hospital for about a week now. She is weak and lacking energy. She has improved a bit but seems to be stuck in a lower gear, if that makes any sense. I have to help her walk long distances and her stamina is definitely gone. She is taking multiple naps each day and has a very limited reserve of energy. Also, her food intake is minimal, some days just a few hundred calories. She has lost about 80 pounds since being diagnosed with cancer and her weight is continuing to decrease.

Many follow-up visits to various doctors have been planned and each visit seems to have lab work associated with it. My wife hopes to resume immunotherapy in October, but I think the doctors will consider ending the treatments. Perhaps lowering the dosage and going back to twice monthly sessions will be considered, but the problem with the twice monthly idea is that the FDA approval of this drug may not allow this as an option. I know a certain number of people cannot complete the course of immunotherapy treatment but none of the literature that I can find says why. Perhaps this is what my wife is going thru now.

I do know that none of the tests run in the hospital found any cancer in her body and they did look. This recent hospitalization makes me wonder if the cure for the cancer is almost as bad as the disease. On good days you say, “No,” on bad days … well, you hope there aren’t many until things improve.