Author: William

This week started out with a bizarre but happy twist to my wife’s chemotherapy regiment. On Monday, she met with the Oncologist who informed my wife that she’s done with chemo. Our understanding of what was going to happen was upended by this announcement. So, no more pumps or all-day trips to the Infusion Center each week.

We were left wondering why? If you recall, the chemotherapy was supposed to be done concurrently with the radiation treatment. My guess is that the new chemo drug was so strong that users need to take a break before having another round of treatment. Since the next round of treatment would be after the radiation, there is no need for more.

Meanwhile, my wife is having much difficulty keeping anything down, even water. She is miserable much of the time. As a result of her treatment, she has developed sores in her mouth and pain in swallowing. As expected, her esophagus also hurts because of radiation and acid reflux. Coughing fits were common during this week. Several nausea medications were given to her along with mouth rinses and other concoctions. While not having infusion this week, my wife did go to the infusion center on Friday to get some saline because she thought she might be dehydrated.

A few times during the week, she was able to eat scrambled eggs—many of which were from the local Costco. Specifically, she likes Three Bridges Egg Bites which come in Eggs Whites with Bell Peppers and Scrambled Eggs with Cheese and Uncured Bacon. Of the two, the egg whites were her preference as the bacon bits in the other “were like little pebbles as they were going down.” By Saturday morning she was able to eat two pancakes for breakfast and about 1 ½ more for lunch. This is the most solid food she has had in about eight days.

Without a doubt, this has been the toughest week thus far. My wife even had me drive her to radiotherapy one day due to dizziness. I expect next week to be better because she only has four radiation treatments left. Then the long and probably quiet pause before we start gearing-up for surgery. The only new appointment is one with an allergist to document the reaction to whatever was in the IV bags that affected her.

Lastly, the wife is still in great spirits and clinging to the belief that she can return to the classroom in February and complete the school year. However, …

A few hours ago, I was in the midst of explaining to my son what the treatment path was for his mom once the radiotherapy is completed, when she walked into the room. When I mentioned that if the tests prior to surgery showed that the cancer has spread that there would be no surgery then she got very angry and said, “That’s not going to happen.” If nothing else, it showed us that she is not willing to opening discuss the seriousness of her cancer. Flowers and unicorns are all she wants in her world right now. In addition, saying “No” to her about making long term financial obligations has also become a thorny topic but one beyond the scope of the current post.

Week three of chemotherapy was the most difficult yet. My son and I spent the week with colds while trying to care for our cancer patient. We did the home Covid test twice and it was negative—not that we could have done much about it anyway. Junior got to return to school about the time I started suffering from the cold symptoms.

Monday saw us do a two-hour procedure to install a port into my wife’s chest. The entire thing is under her skin and seems to take a path from its endpoint to somewhere near her heart. It is painful and uncomfortable. There is much bruising from this being done to her. Less that 24 hours after installing it, it was being used at the infusion center.

The infusion day was the longest yet. My wife had yet another allergic reaction to a whole different family of drugs. As it turns out, my wife is allergic to a secondary chemical used to keep the medicine suspended in the IV bag. I have heard it also referred to as a preservative. Anyway, this stuff is also a major component of the Covid 19 vaccines. Thus, my wife is medically excused by the CDC from getting the Covid jab.

As an aside, if my wife did get the Covid shot and died—which we now know would happen, the CDC would not classify her death as related to the vaccine because any death within two weeks of getting the shot doesn’t count under their methodology. So next time they claim to be “following the science” you can know yet another reason it’s a lie from the swamp.

Anyway, the infusion time was about 8 to 8 ½ hours for the first chemo drug. We also came home with a portable pump in a fanny pack. My wife is expected to pump this stuff 2.5 ml per hour for 96 hours. The pump uses those rectangular 9-volt batteries; one at a time. We learned this because they sent us home with two spares. We are currently on the second spare, and I had to dig up one of my own in garage just in case it quits at 1 AM like it did last night. Saturday night at 5 PM we can get the pump, hose, and needle assemble removed until the next infusion day. I can’t imagine having the same needle sticking in your chest for over four days while getting dressed and undressed, taking a shower, eating, sleeping, etc.

Meanwhile the radiation is affecting her ability to eat and drink. Even liquids are painful to swallow. The radiological oncologist says that this is expected and said it might get easier in another week. We will see.

Between the chemotherapy and radiation, this week has been the most difficult. My wife even had to ask for help to get to her radiology appointment yesterday. Today was better and she went on her own. Nausea and occasional vomiting and the medication to prevent them have been a big part of this week. Two more weeks to go until this phase of treatment is done.

Chemotherapy week two has been an epic failure. (Is it just me, or do you think of Aaron Park whenever someone uses that term?) Anyway, after five and a half hours at the hospital’s Infusion Center, session two was cancelled by the doctor. Again, my wife had an allergic reaction to the chemo drug even though they gave her three different drugs to prevent any reaction prior to beginning the introduction of the main drug. She was given no more than a fourth of the solution. We were sent home with orders that the doctor would be contacting us the next day.

Some here at the blog wonder if my wife’s reaction is related to the fact that she is a Trump loving Republican that is being given a known poison called “tax all” via an IV. Clearly many Democrats in California are addicted to this stuff. As you might expect, “tax all” was the easy path. One that has now been denied to us as we learned from the doctor the following day.

In reality, my wife ended up speaking with the doctor twice the following day. It looks like the new treatment will be Cisplatin and 5-fluorouracil (5-FU).

If I have this right, Cisplatin will be given weekly at the Infusion Clinic and the fluorouracil will be administered at home over a series of days via a pump connected to a port. Yep, we get to do self-administered chemotherapy for the next three weeks. What could possibly go wrong?

This treatment requires that my wife has a “port” installed.

Your healthcare provider’s decision to recommend a port may depend on several things. Some chemotherapy medications can only be given through a port because they are too caustic to be delivered into a peripheral vein.

Beyond that, using a port is often easier than inserting an IV each time if you will be having several infusions of chemotherapy.

Chemotherapy Ports Benefits and Risks

The port may be placed on your upper chest or occasionally your upper arm. It is then attached to a catheter tube that is threaded into one of the large veins near your neck, such as the subclavian vein or jugular vein, and ends near the top of your heart.

Oh, while all this is happening, the radiation therapy continues, and its effects are starting to manifest.

Lastly, Really Right junior has come home from school with a runny nose, sore throat, and cough. As a precaution, we told him to start the over-the-counter Covid symptom reduction stuff that we bought at the local pharmacy. We bought the stuff just in case something like this happened.

Week three is coming fast and looks to be a bumpy ride.

This week marked the beginning of chemotherapy and radiation treatments for my wife. She still maintains that her treatment will result in being cured and that come sometime in February, she will be able to resume her life.

Let me break this down in a little more detail.

First, chemotherapy is being used because leeches are like so Middle Ages. Chemotherapy is the purposeful injection of poison into your body that works much like the theory of the game “chicken”. You hope the “bad” cells are killed before the “good” ones. Depending on the dosage and frequency of treatment this may or may not work. However, it turns out, your body and immune system take a beating. Oh, to get your body to tolerate the chemo drugs, they give you other stuff before and after.

Radiation is more of the same. It is trying to concentrate a lethal dose of this unseen killer at a particular point or points in the body. As mentioned in a previous installment, the radiated tissue must be removed in a window five to ten weeks after “treatment” ends. Also, they forget to remind you that all the tissue which the radiation passes thru to get to the cancer takes a beating as well. The military would call this collateral damage but guys in white lab coats call it medicine.

Oh, my wife’s new basis for claiming that she will be cured is that the doctor filled out her initial disability application and said that the soonest that she could return to work would be February 2022. In her mind this means that she will be cured by February. Is this an example of childlike faith or utter delusion? I think the latter. In my opinion, my wife’s optimism is that of a five-year-old aspiring to be the next Disney Princess. This may be cute when looking at five-year-old children but in adults its disturbing.

As to the actual treatment. We were at the hospital for just over seven hours for the first round of chemo instead of the expected two and a half to three hours. My wife had a reaction to the drug, and it took much longer than advertised. After a few hours at home, she had a horrible headache and was not allowed to take any medication for the pain. (The following day she was told Tylenol would be ok to take.) In addition, while she has no fever, it looks like she spent 14 hours in the sun yesterday as her skin is a very bright shade of red; especially her face.

Two days later, my wife is lethargic and had some nausea. There is a prescription for that if she remembers to take it. She also spent a few hours in bed but was unable to nap so she opted to read a book.

The treatment train has left the station. I plan to post another update in about a week as we travel thru this journey.

Treatment is finally scheduled. I should be happy about that but…

We finally have a start date for chemo and radiation in mid-September. The radiation is the heavy lifter in this treatment plan and the chemo is supposed to make the radiation more successful. This is penciled -in for five weeks. This will be followed by four to six weeks of waiting and then will be followed by surgery. Said surgery is just in time for the beginning of the holidays. And then everything is all better, or so my wife claims.  (She keeps using variations of the word, “cured”.)

Folks, if having esophageal cancer was really this easy, then why are half of all patients diagnosed with this cancer, dead within 13 to 18 months of diagnosis? I guess in polite company we don’t ask, and they won’t volunteer it.

For those willing to listen, the talk with the radiologist was measured and cautious. No, “you probably won’t get burns on your skin” and “your hair probably won’t fall out”. Then the comment about “if you’re healthy enough, you can have surgery.”

Of course, the treatment is to shrink to tumor and then allow for surgery. “Yes, radiation shrinks the tumor, but you may develop sores in your esophagus that prevent you from eating what you want.”

The chemo/radiation treatments will decimate my wife’s immune system and necessitates locking down all household members in a manner that sounds suspiciously like the two weeks to flatten the curve nonsense inflicted on us during the spring of 2020. However, unlike then, wipes and toilet paper are easily obtainable. During this time, our son gets to go to school and back, while I’m the designated grocery shopper. My wife is expected to lose 20 to 25 pounds during this period of time and that’s without the doctor knowing that I will be the designated cook for much of this time.

As for the surgery, my wife has it in her head that it will be laparoscopic in nature and over in a short period of time. Color me skeptical. We will know in a few days when we meet with the surgeon.

Update after meeting with the surgeon.

The surgeon says the procedure must be performed between five to ten weeks after the end of the radiation treatments. Five weeks is to allow the presence and effects of chemo to dissipate and probably allow the immune system to recover slightly. The ten-week limit is due to the fact that irradiated tissue will become scare tissue making the success of the surgical procedure unlikely.

Now for the procedure itself. Here are some quotes related to what is scheduled to happen.

Surgery to remove some or most of the esophagus is called an esophagectomy. If the cancer has not yet spread far beyond the esophagus, removing the esophagus (and nearby lymph nodes) may cure the cancer. Unfortunately, most esophageal cancers are not found early enough for doctors to cure them with surgery.

Often a small part of the stomach is removed as well. The upper part of the esophagus is then connected to the remaining part of the stomach. Part of the stomach is pulled up into the chest or neck to become the new esophagus.

How much of the esophagus is removed depends upon the stage of the tumor and where it’s located:

If the cancer is in the lower part of the esophagus (near the stomach) or at the place where the esophagus and stomach meet (the gastroesophageal or GE junction), the surgeon will remove part of the stomach, the part of the esophagus containing the cancer, and about 3 to 4 inches (about 7.6 to 10 cm) of normal esophagus above this. Then the stomach is connected to what is left of the esophagus either high in the chest or in the neck.

Surgery for Esophageal Cancer

The surgeon described the procedure as a transthoracic esophagectomy. This method is also known as the Ivor Lewis Esophagectomy. The technique was originally developed in 1946.

A transthoracic esophagectomy, also known as an Ivor Lewis esophagectomy, is a procedure in which part of the esophagus is removed. During this surgery, small incisions are made in the chest and another is made on the abdomen. The cancerous portion of the esophagus is removed, along with the surrounding lymph nodes and a small margin of healthy tissue above and below the tumor. The stomach is made into a cylinder, pulled up into the chest and connected to the remaining section of the esophagus.

Transthoracic (Ivor Lewis) Esophagectomy

Illustrations of the procedure can be found at Technique of Open Ivor Lewis Esophagectomy. Please read descriptions of the various drawings to get a better idea of the procedure.

Pre-Surgical Complications

The surgery has a few points of deciding go or no-go on going thru with the procedure.

Is patient physically able to undergo the surgery after the pounding their body endures from the chemo and radiation?

Does the presurgical PET scan show any spread of the cancer since patient has had the chemo and radiation treatment?

Surgical Complications

When surgery begins, following the incision into the chest and stomach area, the doctor does a visual inspection of tissues surrounding the cancerous area. If cancer has spread, then the surgery is aborted before it proceeds further.

The operation begins with an esophagoscopy to confirm the extent of tumor. On opening the abdomen, the right gastroepiploic artery is palpated and its fitness as the blood supply for the gastric conduit is confirmed. Abdominal exploration should confirm absence of liver metastases, extensive nodal disease, omental metastases, etc.

Technique of Open Ivor Lewis Esophagectomy

Post-Surgical Complications

Comparison of complications reported in a recent series is hindered by the lack of uniform definitions of complications, the nonreporting of events, and the mixture of surgical approaches in some of the reports. The incidence of pneumonia has varied from 8% to 26%. Anastomotic leak has been detected in 3% to 8%. Mortality has varied between 1.4% and 10%. It is also known that esophagectomy is a procedure that is affected by hospital and surgeon volumes.

The surgeon said that a hospital stay of 7 or more days was common. Per reading that I have done, some post operative complication is likely. Per the American Cancer Society, here are likely risks:

• Short-term risks include reactions to anesthesia, more bleeding than expected, blood clots in the lungs or elsewhere, and infections. Most people will have at least some pain after the operation, which can usually be helped with pain medicines.
• Lung complications are common. Pneumonia may develop, leading to a longer hospital stay, and sometimes even death.
• Some people might have voice changes after the surgery.
• There may be a leak at the place where the stomach (or intestine) is connected to the esophagus, which might require another operation to fix. This is not as common as it used to be because of improvements in surgical techniques.
• Strictures (narrowing) can form where the esophagus is surgically connected to the stomach, which can cause problems swallowing for some patients. To relieve this symptom, these strictures can be expanded during an upper endoscopy procedure.
• After surgery, the stomach may empty too slowly because the nerves that cause it to contract can be damaged by surgery. This can sometimes lead to frequent nausea and vomiting.
• After surgery, bile and stomach contents can back up into the esophagus because the ring-shaped muscle that normally keeps them inside the stomach (the lower esophageal sphincter) is often removed or changed by the surgery. This can cause symptoms such as heartburn. Sometimes antacids or motility drugs can help these symptoms.

Conclusion … for now.

Now that I have described what lies ahead, I have a few closing comments.

My wife continues to display signs that the cancer is still growing. She has more difficulty swallowing than a few weeks ago and each night she is now afflicted with lots of acid reflux after going to bed. She believes (and based on what I see, I agree) that her stomach is no longer sealing, (sphincter muscle is no longer closing her stomach). She believes that her tumor is preventing this system from working correctly.

I will update you further as we progress thru this treatment. I still remain pessimistic, but as I am but a spectator in the drama, which is about to unfold, my opinion is of limited value.

As expected, this installment won’t be any more cheerful than the last. I’m writing this account for two reasons, first so that I have a way to deal with my emotions as I have to deal with what’s going on with my wife, my role as the supportive spouse, and the role as parent of a teenager facing the real prospect that he will lose his mother in the next several months. The second reason is in case somebody else finds this account and may be going thru the same cancer in their family.

I would have written sooner but the doctors found ways of delaying the PET scan and coming up with a treatment plan—a plan that while formulated still lacks a start date.

It’s now been about three weeks since the initial diagnosis. In that time, my wife has developed much more difficulty in chewing food since it keeps getting caught on the tumor. Clearly the tumor continues to grow.

The PET scan results were emailed to us and the doctor simultaneously just a few hours after the procedure. The tumor is in my wife’s esophagus just above the stomach. It is 40 v 27 mm in the axial plane (left and right) and 60 mm in craniocaudal extent (up and down). This translates to 1.57 by 1 by 2.36 inches. The cancer was found in only one location and thus excludes a stage 4 diagnosis.

Per several medical studies that I’ve read on the Internet, the over/under on tumor size for esophageal cancer is 3 cm (or 30 mm) in height. Under 3 cm, the odds are much better for survival. Over 3 cm, the odds are markedly worse. Per one study that did three divisions, under 3 cm, 3 to 6 cm, and over 6 cm; the numbers are even worse over 6 cm. This is regardless of stage of the cancer.

The difference between stage 2 and 3 for cancer in this situation is a matter of how many layers of esophageal tissue that the cancer has penetrated. More superficial is stage 2 and more layers containing cancer is stage 3. Given the size of the tumor, I think it’s stage 3, but the doctor won’t commit to saying that. The doctor said that the treatment is the same so why does it matter? As an aside, the doctor capable of making the determination is on vacation so waiting for the endoscopy ultrasound would cause even more delays in treatment.

Oh, the treatment is six weeks of daily radiation and weekly chemotherapy. This will be followed by surgery to remove the cancerous area. Per Doctor Google, as my wife calls the Internet, the surgery portion for this type of cancer is pure butchery. When I think about this treatment plan, I have a mental picture of Star Trek’s Dr. McCoy (Deforest Kelly) mumbling about the damn primitive 20^th Century butchers.

Besides waiting to get a start date for treatment, we are waiting to be contacted by a “nurse navigator”. Apparently, this nurse will be our go-to person and point of contact to guide us thru the maze of cancer treatment. My sister says there is also a similar person whose job is to guide you thru the financial and insurance obstacles necessary to get treatment.

After writing this draft we did get more info on the treatment plan from a “clinical nurse navigator”. Also, and I don’t know if its just because its August or it’s a Covid thing, but the radiologist assigned my wife’s treatment is on vacation and thus we are experiencing another delay as we wait for him to return. Ditto for the surgeon. Additionally, due to Labor Day being during the first full week of September, we may be pushed back another week because they want chemo on Mondays (of course they have Monday holidays off). Thus, we are probably looking at another three-week delay before any treatment will begin. Hurry up and wait may be monotonous for military life but for this type of cancer, its just more time for it to grow and spread, two things that make it even more life threatening. I think the doctors should be allowed vacation but the fact that their workload seems to freeze when that happens is concerning. Sometimes it feels like our emergency is not their problem. I’ll post more as things develop further.

“And as it is appointed for men to die once, but after this the judgment” Hebrews 9:27

Yep, we merrily go along living our lives and suddenly, everything comes crashing down. That is the place that my family is in now. I always knew that our plan to exit California would be contingent on certain things happening or not happening—making allowances for elderly parents was what I had in mind—but the unexpected and unanticipated happened from another vector altogether. You see my wife has esophageal cancer.

Unlike my experience with skin cancer, cutting it out and stitching up the hole won’t work on this one.

Nope, by the time you have symptoms, you’re probably hosed.

Here’s some quotes from research that I did.

Unfortunately, most esophageal cancers do not cause symptoms until they have reached an advanced stage, when they are harder to treat.

Trouble swallowing
The most common symptom of esophageal cancer is a problem swallowing (called dysphagia). It can feel like the food is stuck in the throat or chest, and can even cause someone to choke on their food. This is often mild when it starts, and then gets worse over time as the cancer grows and the opening inside the esophagus gets smaller.

When swallowing becomes harder, people often change their diet and eating habits without realizing it. They take smaller bites and chew their food more carefully and slowly. As the cancer grows larger, the problem can get worse. People then might start eating softer foods that can pass through the esophagus more easily. They might avoid bread and meat, since these foods typically get stuck.

Signs and Symptoms of Esophageal Cancer

The 5-year survival rate for esophageal cancer is alarmingly low.

It’s essentially a death sentence. Just HOW does esophageal cancer cause death?

The 10-year survival rate of this cruel disease is virtually zero, says Alex Little, MD, a thoracic surgeon with a special interest in esophageal and lung cancer, and clinical professor at the University of Arizona.

That’s because almost always, it’s discovered after it’s already spread.

Furthermore, esophageal cancer grows and spreads quickly.

How does esophageal cancer eventually kill a person?

There are two types of esophageal cancer, each with different risk factors:

Adenocarcinoma
Cancers that start in gland cells at the bottom of the esophagus are called adenocarcinomas. This type of cancer is the most common esophageal cancer. It usually occurs closer to the stomach. Chronic acid reflux, gastroesophageal reflux disease (GERD), Barrett’s esophagus and chronic heartburn can increase your risk of developing adenocarcinoma esophageal cancer.

Esophageal Cancer

Per Dr. Fauci’s agency are these Esophageal Cancer Facts

5-year survival rate 19.9 %
1 % of all new cancer cases
2.6 % of all cancer deaths

In 2021, it is estimated that there will be 19,260 new cases of esophageal cancer and an estimated 15,530 people will die of this disease.

Cancer Stat Facts: Esophageal Cancer

Oh, sorry you woke people but race and gender matter with this cancer.

Among 2025 patients, 87.9% were White and 12.1% were Nonwhite. Median survival was 18.7 months for Whites vs 13.8 months for Nonwhites (p = 0.01).

Survival Disparities by Race and Ethnicity in Early Esophageal Cancer

According to the American Cancer Society, the percentages of people who live for at least five years after being diagnosed with esophageal cancer (taking into account that some people with esophageal cancer will have other causes of death) is 43% for localized cancer to the esophagus, 23% for cancer that has spread regionally, and 5% with distant cancer spread.

Esophageal Cancer

The male to female ratio of the esophageal cancer incidence is 3:1.

Esophageal Cancer: Should Gender Be Considered as an Influential Factor for Patient Safety in Drug Treatment?

I grant that I tend to be the cup half empty kind of guy, but can you blame me after reading the above?

Meanwhile my wife leans to the unicorns and rainbows end of the spectrum, but she too is making preliminary plans to make radical changes in her life. In fact after I wrote a draft of this post, she got the biopsy results and 20 minutes later quit her job.

We had plans to do other things but right now they are on hold. Folks we could use some prayers for a whole host of decisions that we are expected to make in a very short amount of time. Whether God heals my wife or not, is up to Him. My biggest concern is for our teenaged son.

For more information, here are two videos for your consideration. In the first video, Christine talks about her diagnosis of esophageal cancer. The second video is an announcement of her death five months after her original diagnosis. Oh, Christine was 34 years old. Sobering stuff.