ER Visit Today

Yvonne is resting comfortably in the emergency room at PeaceHealth hospital as of this writing. She woke with some chest pain, and the folks at her radiology appointment sent her on over to the ER. According to Dad, they're pretty certain it's not her heart, and she's currently getting a CAT scan to check for blood clots in her lungs (pulmonary embolism). I'll post an update when I hear more.

Update @ 7:18 pm: Yvonne has been sent home from the ER. The EKG, chest x-ray, and CAT scan were all negative for blood clots, so while they don't know what was causing her pain, it appears not to be immediately emergent, and they sent her home.

What We Can Do to Help

The purpose of this blog is to connect our friends and family and create an active, loving, contributing network of support for Yvonne, Tom, and Steffi throughout Yvonne's cancer treatment. This is an extremely difficult time for their family, but we can help make it better. I have some ideas on how we can help.


Be vocal in your love and support. Let them know you are thinking of them. You could:

• Call
• Send a text
• Send Yvonne a Facebook message
• Send a card (check these out--Yvonne, don't look!) or a letter
• Comment on this blog--they'll be checking it and it would be nice to see an active community here

Donate your time. If you're nearby, you could come over to:

• Clean house
• Help pack (don't know why they're packing? see this post)
• Make dinner
• Mow the lawn
• Do some laundry
• Drive Yvonne or Steffi to appointments
• Tell jokes
• Read aloud
• Stand on your head

Send money. No kidding, this is expensive: the cancer treatment itself, of course, but there are a lot of other new costs, too. You could contribute money for any of the following:

• Moving. I'd really really like to see us get these guys a moving service. They shouldn't be doing this right now. Can you help? (See this post for more about the move.)
• Gas. Round trip to the Cancer Center is 30 miles x 5 days a week x 7 weeks = over 1,000 extra miles.
• House cleaning. I have volunteered to send my wonderful cleaning lady over to do floors, bathrooms, etc. to save them the time and energy.
• Food. I have this notion of filling their freezer with easy-to-prepare meals and snacks that Yvonne will find appealing even when she's not feeling so hot.
• Prescriptions. There are a lot, and Medicare doesn't cover everything.
• Medical bills. According to this article, the average monthly cost of a brand-name cancer drug is $10,000. Medicare covers 75%. This is only chemo, not including 7 weeks of daily radiation treatments. You do the math.

A quick Google search revealed a couple of websites with other ideas about what we can do to help. 

• Cancer + Careers has some great thoughts about sending written notes and more.
• Cancer.net has a great article including Do's and Don'ts about what to say, gift ideas, and more
• I love the "go ahead and do something" advice on GiveForward's list of five ways to support a cancer patient
• This HuffPo article repeats some of that advice with a fun tone

We have to pull together to make sure the Kenyon family knows we love them and we're there for them. Pick something and do it today, won't you? And then tomorrow. And then...You get the idea.

Thank you!

A Sense of Humor is So Important

Dad told me today to start calling Yvonne "The Lone Ranger."

So he can call her "Chemo-Sabe."

And he will be "Tom-to."

By ABC Television (eBay front back)
[Public domain], via Wikimedia Commons

When It Rains, It Pours: the Kenyons Are Moving

Some of you may not have heard the news: the Kenyon family is facing an imminent move. Great timing, huh?

On Monday, April 27, after they got home from a very long day (Yvonne's first day of chemotherapy and radiation), the landlady came to visit. She informed the folks that she's going through a divorce and will need to move into their house herself. She gave them a 30-day notice to move.

As of this writing (May 5), as far as I know, their destination is still being considered, but the fact remains that the Kenyon family must pack their belongings and vacate their home.

Packing Begins

Yesterday I went over to Dad and Yvonne's house to help out for a bit. I had made a big batch of spaghetti sauce and some banana bread that morning, and I brought a gallon of sauce and a loaf of bread. I also cut lilacs from our tree and brought those.

On the way to Lynden, I stopped at the U-Haul store on the Guide Meridian and bought some moving boxes and some tape. I had promised to save the moving boxes they'd lent us last summer, but I didn't. I remember thinking, "They aren't moving any time soon." Hardy har har.

When I arrived, Yvonne was just settling in for a nap, and Dad was at the grocery store. (Steffi was rumored to be upstairs, although I didn't see her while I was there.)

Yvonne said she was feeling okay, but very tired; this was her third nap of the day. The more napping, the better, I say! I tucked her into bed and started in cleaning the kitchen. Dad soon got home and we unpacked the groceries, then had a glass of iced tea in the sun and talked about options for their impending relocation. Then we packed a set of china, and pretty soon it was almost seven and time for me to scoot home.

The Indiscriminate Hugger

Yvonne sure needed a hug yesterday, and I felt bad that I couldn't be there--the first call from the Cancer Center asking me to come down there right away ("she's okay, but..."), and I was in Seattle for the day. But Dad hurried over.

Today, as the nurse, David, was changing the IV fluids, Yvonne told me what had happened when Dad arrived. "David came in and found me sitting in your dad's lap," she said, then turned to me conspiratorially: "I asked David, but he wouldn't let me."

The nurse took the teasing well. "You sure did need a hug," he said mildly.

"That's right, and I'll take one from anybody," Yvonne agreed. "I'm what you would call a cuddle slut."

Meeting with the Medical Oncologist

From Yvonne's appointment with Dr. Kominsky, a medical oncologist, on Wednesday, 4/15/15:

On the way in to the appointment, the nurse mentioned that Y will need to remove shoes for every visit because the chemotherapy dosage is determined based on weight.

We waited quite a long time for Dr. Kominsky, who finally joined us and began the appointment with several "getting to know you" questions, asking Y about her retirement, her kids, etc., and then got into some family history and medical / "how are you feeling" questions.

He mentioned that her condition is unusual because of the size of the tumors but also because there are two of a similar size but that they don't appear to be metastatic (my interpretation).

Adding chemotherapy to radiation treatment potentiates the radiation, i.e., makes it stronger. (Later adds that chemo probably improves the kill rate of the cancer by 5% to 10%.) He says "these cancers are potentially curable. The cure rate isn't as good as with surgery for a cancer this large." He describes cancer as one cell that's gone mad and has forgotten how to die; it's cloning itself and dividing. "These are weeds that tend to grow if you don't pull out every root."

He describes the treatment with radiation and chemo as beating the cancer down and then continuing to attack it while it's down, and this is why it's important to do the whole treatment cycle all at once, rather than taking a break in the middle. He "recommends we treat optimally--if you allow [the cancer] some recovery phase [treatment is] not as successful." Says he'd rather treat it continuously (than allow Yvonne to go on vacation in the middle of the course). She agrees this is the best course of action.

He says it's not the standard of care to deliver this therapy (I believe he means to give chemo during radiation) but that her situation isn't standard.

Yvonne agrees that she will undertake the chemo at the same time as radiation and will do the whole course all at once, postponing their planned cruise.

Dr. K describes the process. She will receive chemo over the first week and then again for another one-week course about halfway through the 7-week radiation course. The primary drug she will receive is cisplatin. It is delivered via IV.

Side effects may include nausea (they will give her some strong anti-nausea medication via IV at the same time, and also have prescribed her some to take at home). There may be some hair loss, but not necessarily. Sometimes sores in the mouth. There's a potential drop in blood count, they will take labs every week to monitor. Sometimes diarrhea, they sometimes have to hydrate patients via IV. Cisplatin causes kidney failure in less than 1% of patients, and high-frequency hearing loss in 30%. Other side effects can include ringing in the ear, hiccups, feeling like the ears are underwater, a metallic taste in the mouth, "taste perversion" where you no longer like foods you usually like, and fatigue.

Yvonne will also receive etoposide on alternating days with the cisplatin. The delivery doesn't take as long for this drug.

Dr. K concludes the visit making sure Yvonne and we know that this is tough, he knows it's tough, but "you can't make an omelet without breaking some eggs." And he says "there is a significant chance of cure."

Nurse Teresa comes in to talk to Yvonne about treatment and scheduling. The first day will be very long because she will receive lots of fluids, anti-nausea medicine, etc, plus both cisplatin and etoposide. Y should wear comfortable clothes and can bring a snack or lunch. She will have access to TV and a computer and can also bring a book or nap if she likes.

Yvonne will get a picc line inserted in her arm through which the medicine, fluids, etc. will be delivered and blood will be drawn--this means she won't have to keep getting "pokes" throughout the course of treatment, but just the one time when this line is inserted. That will be at the hospital on Thursday (this week). She should return to the hospital Friday for a dressing change, and then subsequently the dressing will just be changed once a week.

Cisplatin can cause you to lose magnesium and potassium; they will check for that in the weekly blood draw and replenish via the picc line if necessary; they will also rehydrate her via that line if necessary. This can be helpful if she's feeling especially tired.

The chemo can cause constipation; Teresa recommends starting Miralax the day treatment begins to get a handle on that. They can prescribe her a sleep aid if necessary. Gatorade is a great way to keep yourself hydrated.

Teresa or one of the other nurses are always available by phone at 360/788-8211, Monday through Friday, 8-5.

Next steps: Yvonne will have "walk-through" of radiation treatment on Monday (today). Get picc line on Thursday, dressing change on Friday. First day of chemo and radiation on Monday, 4/27.

My notes:

My friend Bonnie suggests you ask for this anti-nausea medication by name: Zophran. She says it's really good. She also recommends you pop an anti-nausea pill in the car on the way home from treatment; that it is important to stay ahead of it and not let the nausea creep up on you because it's hard to make it go away once it's there.

Meeting with the Pulmonologist

Meeting Thursday, March 26, 2015, with Dr. Jaffer, Pulmonologist

In response to "how have you been," Yvonne stated she is having some difficulty breathing deeply / on deep breaths since the biopsy. Dr. J said she had had a pneumothorax, a little bit of air in the lung (or lung lining?) but that was on the left side. He briefly discussed doing another chest x-ray today to see if that had cleared up, then looked at the scan again and said it was really small and wouldn't show up on an x-ray. He didn't really address the pain in her RIGHT side.

Dr said that Yvonne has squamous cell carcinoma, a kind of non-small-cell lung cancer. It doesn't look as though it's spread to other areas of the body, and none of the lymph nodes are showing up ("lighting up," as he said) on the PET scan. He explained that there's a possibility that they're cancerous anyway, but that it's hard to tell, and if he does another biopsy it probably wouldn't change the course of treatment.

There was something "lighting up" near Yvonne's chin on the PET scan. He said this was probably her dental implant or bridge. He briefly examined her mouth and chin and didn't see anything.

Dr. described the results of Yvonne's pulmonary test (breathing test)? from earlier today and said she breathed out 1.29 liters in the first second, which is only 49% of baseline; she has a "significant airway obstruction." He said she must be very tough, and showed us on the scan that she already has some emphysema which is causing this decreased lung function.

Because of this borderline lung function, a "resection" of the lungs would be difficult and he doesn't recommend surgery. "This is pretty complicated."

Dr. describes that pathologically, the masses look like the same thing: they are the same kind of cancer. Whether they are two independent tumors or whether one started first, then became metastatic and moved to create the other one is the big question. He said it makes sense that it is metastatic, but because there's no cancer anywhere else, he's not sure.

Dr. recommends brain MRI to ensure that no cancer has spread to the brain (it wouldn't show up on PET scan). If there are tumors there, that means the cancer has metastasized and Yvonne is in Stage 3a (he earlier said Stage 4 but switched when Nurse Kathy came into the room). If not, there's still no determination of whether the cancer is metastatic, but he wants to proceed as if it is not: aggressively and tackling the tumors in a targeted way. If there are brain tumors, he said, radiation would be "palliative, not curative." If there are no brain tumors, we would wait until another CAT scan was done (probably after chemo, in a few months from now) to see whether the tumors are spreading.

We asked about the side effects of radiation and how long the course might last. Dr. said he's not the expert but maybe 1x / week for 6 weeks? and that main side effects to worry about (given the placement of the tumors) are scarring and fibrosis. With chemo, it's nausea, vomiting, immunosuppression. She would probably be doing a cisplatinum type of chemo. (My medical dictionary says this is "used to treat cancers, especially solid tumor such as testicular and ovarian carcinoma" and also lists renal failure as a possible side effect.)

So: brain MRI, then meeting with radiation oncologist, and meeting with medical oncologist (chemotherapy doctor). Dr. J will discuss this course of action (and the question of not biopsy-ing the lymph nodes) with the "chest conference" team of doctors on Monday morning. Kathy added later that this team includes a pathologist, a radiologist, etc.

We then met Nurse Kathy Millson, the "nurse navigator" for lung cancer at the PeaceHealth Cancer Center. Her job is to coordinate and support lung cancer patients. Dr. J. said "she knows more about cancer than I do." (He mentioned that he usually has her in the room when he has one of these appointments and wasn't sure why he hadn't called her; but she happened to be in the office.)

Kathy reiterated much of what Dr. J had said (she did say it was adinocarcinoma, not squamous, but said they are similar). She explained that she had been working behind the scenes and had helped coordinate the biopsy Yvonne had on Monday, and was central in bringing in Dr. Jensen who apparently performed the biopsy. She said that biopsies on both sides at the same time are "really really risky" but that Dr. Jensen is something of an expert in the field and had "felt confident" that he could do it.

Kathy will work on getting approval (I assume from Medicare) for the brain MRI and appointments with the two oncologists. She thought she could get the MRI scheduled within a week. She gave Yvonne a bunch of information to read.

At one point I asked, and I think this is the bottom line to remember now: "So nothing major is going to change in the next couple of months, it looks like?" and the doctor confirmed that. We just need to take things one step, one day at a time.