Really Right

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.