Month: April 2018

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Five Weeks…
Eleven: Doctor appointments.
Four: Scopes through his nose into his throat.
Two:  Scans, one CT and one PET
Two: Blood draws.
Three:  Appointments for me. Started out routine and ended in an ultrasound and
mammogram for what resulted in uncertainty and a recheck in six months.
One: Dermatology appointment for me to remove a precancerous spot on my forehead.
Two:  Dr appointments for Robby.
One:  Swollen knee on Michelle needing x-rays and a brace. (The tendon below her knees are too short. Something she was born with.)
Two: Kids enrolled in college for next year.
One: Kid starting a new job. (Lockheed, yay CJ!)
Two: Birthdays (Stacey 19 and Robby 16)
One: High School game night at our house
Five: The number of shifts at work Robby has to be driven to.
One: huge insurance fiasco landing us in a complaint and appeal cycle.
Countless: Blessings and signs that God is not surprised by any of this and He, not naps, will sustain us.

It’s been a whirlwind!

We met with the Radiology Oncologist and she went into more detail of what to expect from radiation. We scheduled the placement CT scan. This is where they will do a scan and make the mask that will hold his head in place during the treatment. That will happen this Friday.

We hope to have the chemo teaching session some time this week too. Monday we see the Medical Oncologist and if we’ve had the teaching session by then, he will give the go-ahead to begin chemo.

We learned from today’s appointment that the chemo medicine we’re using starts with a double dose a week prior to beginning radiation.  Hopefully that’s next week.

We made a little mistake…
We asked the Radiation Oncologist what she thought of the chemo medicine we chose. She said she would have chosen the other option. Of course she did! Ha!  She gave her input and shared why she would have recommended the other one for him. After some discussion I reminded Carlos that she didn’t say anything we hadn’t already considered. She shared nothing new with us. We had already weighed these things and made a decision.  He went back and forth but as the day went on, he decided to leave it as it is.

As for the side effects we can expect, but hope to avoid or minimize…
The radiation can cause hair loss on the side and back of the head due to where it has to hit to get the lymph nodes that are involved. It will cause a painful throat. Like swallowing razor blades or shards of glass. His taste buds will be damaged and food and drinks will taste disgusting. Taste might take years to normalize again. His salivary glands will be damaged and it may take years to regain his ability to make saliva, or to make an adequate amount. As the tumor breaks down, an excessive amount of mucus will form, which can cause gagging and irritation. He already is experiencing a bit of this just from the irritation of having the tumor there.  They did say if it gets real bad they can give him a suction machine to help.  His skin on his neck might get irritated or burned. He might get sores in his mouth, and his teeth and jaw could be damaged. He’ll wear a mouth guard to try to protect that area.  They will give him creams for the skin, mouthwash for the sores, and sprays to keep his mouth wet.  Fatigue is a huge side effect as well.

The Chemo has it’s own set of things.  It won’t cause hair loss but has a high incidence of skin rash on the face, neck and shoulders. Some get such a bad rash that they have to hold off on treatment to let it heal to avoid infection. Others get a more mild rash. It can be painful and itchy. They will give him creams to help with that. The rash often spreads to the inside of the mouth too, so with radiation causing sores and chemo causing a rash, his mouth could be very painful.  It can cause nausea so he’ll be given anti nausea meds with treatment, as well as benadryl to reduce any possible allergic reactions. Fatigue is a highly common side effect too.

We’re praying he falls in the mild category of all these side effects but it was daunting to listen to the most common things people encounter, some of those I mentioned are in 100% of those being treated this way, the rest are above 80% incidence of occurrence.

All we have wanted from the beginning was to get rid of this thing. Now that the steps are almost completed and the start date is in sight, I can’t help be feel anxious. I’m back where I was at the beginning, tossing and turning at night, unsure of what lies ahead and what it’s going to be like to actually go through this with him. I can’t even fathom how he must feel.

Even though Winter and Spring seem to be duking it out for determining ther weather here, Carlos got our swamp cooler prepped for when the heat decides to show up. He’s gotten a few other projects finished but the rest of what we’d planned to do will have to wait. I’d hoped this was the year we’d get grass in the front and back yards, but what’s one more year?! I didn’t pray for patience, but somehow I’m getting to practice it a lot! Haha!

My brain is tired but my heart if full.  The meals on appointment days have been so helpful! Thank you for walking alongside us in this way.

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Brief visit with the Medical Oncologist as follow up from Monday and confirming treatment choice. Carlos chose the weaker of the two options based on our research that shows fewer and less severe side effects and knowing that if by slim chance it doesn’t work, he can do a second round using the stronger of the two. Studies are showing a very small margin between the two and their success rate, small enough that given the treatability of his tumor, he feels confident the gentler drug will do the job. Dr was impressed in our understanding of the two options, and the criteria we based the decision on.

Dr also agreed with the decision to put off getting the feeding tube until absolutely necessary, if at all.

We then met with the gal in charge of clinical trials. She will call later today or tomorrow to let us know if he qualifies for one. Carlos isn’t super keen on the idea of doing a trial, but he wants to hear the details before ruling it out entirely.

For now, he will see the Radiology Oncologist Monday and the Medical Oncologist Friday of next week and somewhere in there start one or both treatments.

Knowing this is the beginning of healing, yet also the beginning of some very difficult weeks, leaves us both sort of like, …well I don’t even know.

I’m trying to order my schedule and prioritize the “have to do” and the “can wait” lists. Carlos is trying to eat all the foods he will miss eating lol.  We took care of mundane things like fixing a flat tire, puppy shots, making lunch, selling an old van that doesn’t even run, and planning a bonfire night with a group of high schoolers.
Okay, so literally as I was about to publish this, the call regarding the clinical trial came in. He doesn’t qualify so that’s not an option. An answer to prayer because it’s kind of nice to finally have a clear answer on something. Now we wait for insurance to authorize the chosen treatment. Even though we have a PPO, this still requires an authorization. Once we get that, should be mid next week, they will schedule a chemo teaching session for us and THEN we can schedule treatment to begin. Most likely that puts it to begin sometime the week of the 23rd.

Thank you again for the prayers, encouragement, and meals!

Meanwhile, don’t tell them, but here’s a goofy picture of two of our kids because filters are life. So I’m told.                        {Next Post}

 

We met with the Medical Oncologist to discuss the chemo side of treatment.
You have to hear this part first, then I’ll share the medical stuff.

We had an appointment with Dr “M” scheduled for next week and kept calling to see if there was a cancellation we could move our appointment up into this week, to no avail. Finally we asked if there were any openings with his partner, Dr. “F” and there was! Not only that, but it was at a time we were available and Michelle was able to get off work a little early to get Stacey off the bus. At the end of the appointment, he prayed with us. Like grabbed our hands and said “let’s pray.” Whoa. Totally feeling the Lord leading us in the messy part of life.

Now for the medical stuff…

Short version… we still don’t have a plan, we still have decision to make and we have a follow up appointment on Thursday.

Long version…
He started by going over staging. We’ve been told stage 3 so imagine our surprise when he said it’s stage 4 due to the size of the tumor and the mestazation to the lymph nodes. Of course we started to question this so he pulled up a chart of the newest staging methods. It turns out that despite all the above criteria, the lymph nodes are just under the measurement and lowered it to stage 2. So, 3, 4, 2… it doesn’t really matter. It doesn’t change the treatment plan, or the fact that this is still a very responsive cancer so we weren’t fazed in either direction by that. He even chuckled and said next month the criteria will probably change again. He was such a down to earth guy and talked to us like good friends. He showed concern yet confidence.

He explained to us that we have a choice of chemo meds. We didn’t expect to have any say in this, but every appointment has been full of surprises, so why not this one?!

He used artillery to explain why we have a choice. He said to imagine we had a target to eliminate and used a handgun. It would do the job and put a hole in the target and it would be conquered.  That is one of the  medicines.  Studies are showing this lower strength med is effective. Now compare that to using a cannon to take out the target. It would obliterate it. Totally overkill but leaves you with no doubt the target is eliminated. That is the other choice of medicine.

So essentially, Carlos has to choose between a medicine that will most likely do the job with fewer but still difficult side effects, vs. a medicine that might be overkill and also leave him with some even more difficult side effects.

Dr F explained that there are categories that would make him recommend one treatment over the other but Carlos falls in the middle of those categories. As we talked about all the options, risks, benefits, ect, Dr F asked if I work in the medical field. I explained about Stacey and how I love learning about these things. Well that go me in trouble. He said, “great, here is a medical journal you can read and let’s meet Thursday to discuss what you’ve learned and what medicine you choose.” I laughed, thinking he was kidding and I said, “Oh, don’t tempt me, I’ll actually do it!” He said, “ya, I can tell, that’s why I’m going to let you.” He feels confident either medicine will work, but we have to choose which batch of side effects Carlos is willing to live with. There are some I’m not sure *I* want to live with! HA!

He also wanted some time to see if there is a clinical trial he can enroll Carlos in, and he’ll be ready to give us that information Thursday as well.

Once we got home, I opened the link to NCCN and found myself searching through a 218 page document of research findings on the treatment protocols and outcomes. I took three pages of notes, made a list of words I needed to search the meaning and application of,  and I made a list of studies that were worth focusing on and those that I could disregard as they had few similarities to Carlos’ case. I spent 7 hours learning about these drugs.

It has now come down to a few concerns.
>  The gentler drug is new, only FDA approved since 2011, the stronger one has                                been used since 1978
>  Long term side effects can’t be confirmed in the newer drug
>  Long term side effects of the other one are a big bummer, one being permanent                          hearing loss.
> At the age of 59, how important is your hearing? Your thyroid? Your Teeth? Your heart? Your kidneys? The list of common side effects and complications goes on. I won’t even bother you with the less common side effects, which would be brutal to experience.

On a lighter note, not all side effects are harsh, some are sort of funny, like this one… ” your eyelashes may grow very fast, become very long and bother your eyes. Speak to your provider about how to best manage this side effect. The hair on your head may become curly, fine or brittle.” 

As for short term side effects, both would be challenging, but knowing it’s short term would make it tolerable. The hardest part is that one of them carries the same common side effects as the radiation does, so that means the pain in the throat would be worse, the sores in the mouth, the skin conditions, the dry mouth due to damage of the salivary glands, would all be worse and last longer.

All along this journey for Carlos I have had my ideas of what I’d want if it were me, but I hold that from him until I see he has made a choice and we can move forward. This one though, man, I have no idea what I would do. The thought of him going through this constantly brings me to tears.

We put a call in for a second opinion from another Medical Oncologist. We hope to bring light to something we have missed, some reasoning we have not considered, some glaring consequence to choosing one over the other. The decision is not made yet so please pray with us about this.

In other news… After this appointment we went to see my parents since we were down in their area. My mom is on week 3 of being home from her massive stroke in October. From total paralysis on her left side, to being able to use a walker is miraculous. She’s very unsteady but keeps working to build strength and regain coordination. It was refreshing to just enjoy their company. I cannot tell you what a blessing it was to come home and be able to dive right into research because someone had dropped off dinner just before we got home. I am so grateful!

If you could pray for one more issue… I am so frustrated with the insurance fiasco. Thankfully Carlos’ insurance is intact. but the kids are not. I’ve filed an appeal. However, the more we dig, the more problems arise. Way too much to explain here and way too much of my time is being spent on hold and re-explaining the whole thing to be told I need to call someone else.

Carlos seems to get very worn out by these long appointments. I’ve noticed a pattern of him having extreme fatigue the day after. Today he dozed until after noon. He did get some puppy snuggles, but couldn’t keep his eyes open for long. He was snoring when I took this picture so I cropped his face so I don’t get in trouble. 😉

 

 

 

 

 

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Today Carlos met his new Primary Care Physician. Since we changed insurance plans March 1st, we had to switch. I thought it was a good idea to establish him as a patient in case something comes up unrelated to his treatment. I also needed one person to receive all his records. For now the ENT has been getting them but down the road, his primary needs to have them too.

She was very thorough with him and discussed a lot of his medical history and current issues. She suggested he get some immunizations since he hasn’t had any since childhood. She specifically wants him to get the Pneumonia, DTaP, Tetanus, and Meningitis.

Carlos wanted to talk to his Oncologist first. Feels strange that he even has one of those to to call.

My thought…I feel like it wouldn’t be a good idea because if he had any reaction, it could delay starting treatment. The Dr. stated her concern about him having chemo and lowering his immunity and the risks of being exposed to something during this time. I defer to Carlos on this one, as it’s his decision and he needs to make the one that he will feel most comfortable with. We have had a child hospitalized twice due to vaccine reactions so we feel more anxious than others might. At this point, he is waiting for the call back from the oncologist.

Now for the fun stuff…
Some sweet friends brought us dinner tonight! They have been friends of my parents for years but became our friends when we connected over having children with disabilities. It’s like a tribe, you become family the moment you enter it. We are blessed to know them and thankful for their sacrificial blessing today, they drove from Northridge for the quick visit. The hands and feet of Jesus.

Here’s how today went.
7 – 8:30 am getting Stacey ready for school.
8:30 – 9 Help Robby get out the door and drive him to school with Stacey.
9- 9:30 Finish getting Stacey ready – change her pants again and force feed her breakfast. Get her on the bus and spend a few minutes chatting with her driver. I like to invest in the lives of those who invest her life. She has become a bright spot in my crazy days.
9:30 – 10 start some laundry, make a few phone calls, check in on my parents.
10-11 Make Carlos and I some eggs and get ready for Dr apt.
11:30 appointment
1:05 leave Dr office
1:10 missed Stacey’s bus. Thankfully Michelle happened to have stopped by the house from work at that exact moment to get her and wait a few more minutes for us to get home.
1:30 – 3:30 get Stacey settled home, change her, give her a snack, and another snack and another. Chase her out of the fridge 39275924 times so she doesn’t sneak food she’s not allowed to eat. Put her shoes back on. Change her out of the shirt she ripped. Change her out of the pants she leaked in. Put her shoes back on one more time. Switch laundry loads. Handle a significant issue with the website for our non profit. (For more about our daughter Stacey, find her on FB at High Fives for Stacey
3:45- 4:15 Pick up Robby from school
4:14 – 5ish  Start preparing a big batch of Stacey’s food for the next several days. Visit with our friends who brought us dinner
5:30-6:30 Enjoy the feast they brought. Send the kids off to church. Answer some emails regarding our insurance. Freak out that two of our kids actually did lose their insurance and I will have to appeal and deal with that nightmare asap.
6:30 – 7:30 Clean kitchen. Finally finish prepping the big batch of Stacey’s food and freezing some portions.
7:30 – 8:30  Stare at the pile of laundry I had stacked on the sofa that Stacey pushed onto the floor so she could sit there. Shake head and walk away. Opt to start writing this update instead of folding laundry.  Contemplate pulling my Cricut out to make the decal my daughter asked for but decide that laundry should get done first so I do neither.
8:30-9ish Get Stacey into bed which includes remaking the bed. Unload a few cases of diapers that were delivered a few days ago.
9:30 Grab my leftover Coldstone ice cream and sit down to finish this.
10ish Kids get home and here we are.

I actually chose to write that out because I feel awkward having people bring us dinner. As I reflected on my day I realized that sure, I could have made something, but it was SO nice to get a break from one more thing to do. Especially on appointment days and on Wednesdays because the older kids work full time and Robby is at school until 4 and then they all had to head out to church where one works and the other attends youth group so they aren’t around to even enlist to help. So I’m grateful even if it makes me uncomfortable.

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Carlos had two appointments that went well and didn’t result in a list of more appointments! That’s become a rarity.

Thursday the 29th we went to the Gastroenterologist with the recommendation from the Radiology Oncologist to get a PEG feeding tube placed.  (Read about that appointment here)

We left this appointment feeling like God had laid out a red carpet for us. As if He was showing us that He sees us, and He has the right people in place for us.

I rarely choose Dr’s without referrals from friends and family. I’ve had to do that through this journey several times. This time we had a time crunch as we were told to have his tube placed prior to any other appointments. I called a few places and chose the one with the earliest appointment that took our insurance. A wing and a prayer people!!

The first sign that we were in the right place was our encounter with the nurse. She asked where he is being treated and we told her City of Hope. She then shared her story of when her three year old son was treated for a rare stomach cancer in their Duarte branch before the Lancaster one opened. He is in full remission now. I couldn’t hold back the tears or the hugs as I listened to this young, brave mom who sacrificed so much for her son and now uses his story to encourage others by working in a gastroenterology office.

We sat with the Gastroenterologist and he explained everything and then let us ask questions. He agreed it may be necessary to keep weight on, keep calories high enough to maintain energy, and keep well hydrated. Then we heard the sound of angels when he said “you don’t have to have it put in until the need becomes obvious”.  That was contrary to all the other Dr’s! He explained that it is a simple, low risk procedure and he can do it the same day we ask for it, and it could be used the next day! He assured us it could wait! He did confirm the need to maintain weight, calories and fluids and said that if that becomes too hard, he will make sure he gets the tube the same day he asks for it. He was so nice and sat with us and not one moment did we feel rushed or petty. He was super kind!

We finally got to leave an appointment feeling excited! Praise the Lord!

Friday was the Dentist. Since it was the last day of Robby’s Spring break and we had done nothing fun all week due to all the appointments and being plain worn out, I skipped this appointment. I took Robby and a friend to a jump place and Michelle and I went to visit my parents. It was refreshing!

The Dentist went well, he had a cavity filled and a deep cleaning and was given the required letter of clearance for treatment. He has a few crowns that are needing to be redone but was told those should wait for after treatment. Yay! Another good news appointment!

I’ve been asked a lot if Carlos is in pain. The answer is sort of. He is definitely uncomfortable with that huge tumor in his throat. Eating is tiring because he has to chew everything until it’s mush and chase every bite with water. He has lost almost 20 pounds so far. He drinks a lot of smoothies and soups. Eating also irritates everything and increases the discomfort and coughing.  The enlarged lymph nodes in his neck seem to be pinching some nerves and causing sharp ear pain. He described it as something stabbing his eardrum. He’s been having that pain all along but it is slowly getting more frequent, almost constant. About a month ago he started taking ibuprofen once or twice a day for it and it helped a lot. Lately he has had to stay on top of taking it every 4 -6 hours or it’s hard to get back in front of that pain. He can’t tell if  he has become tolerant to the ibuprofen or if the pain is just getting worse but he’s having a harder time getting to a place of comfort.

Thank you all for your prayers, kind words, deliveries of Ensure, meals and hugs! We appreciate all of it! This week should be smooth. Only one appointment to do on Wednesday. In the midst of all this, we found out that since our insurance changed March 1st, he has to change his primary care physician. Not great timing, but no big deal. We will meet the new one Wednesday and he’ll have a full physical so she knows his baseline for all the not cancer things.

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