April 16

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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.

 

 

 

 

April 12

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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}30768490_10213917177217232_1583436149_o

 

April 9

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. 😉30173794_10213903322870882_1328465289_o

 

 

 

 

 

April 4

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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.

Coffee and cookies
While Carlos has been going through all this, I had my own little ride to take. I’d had my routine exam and a lump was found. I was referred for an ultrasound on it, which led to a mammogram. I was given the all clear but need a repeat in six months to be certain. It was overwhelming to say the least, and I’m so glad that’s put to rest for now. Fun times. This picture is the cute coffee and cookie corner in the ladies waiting area. Nice touch!

March 29-30

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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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March 27

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Yesterday was the appointment with the Radiology Oncologist at City of Hope. We went in thinking it was the first step to starting treatment. It ended up being the first of MANY to starting treatment. It lasted almost two hours.

What we learned:
It’s stage 3
He needs a PEG (feeding tube)
He needs dental clearance
He has to see the Medical Oncologist
He has to see the other Radiology Oncologist after all those appointments take place.
He will have chemoradiation. It’s both treatments arranged in a way for highest results. The general plan is daily radiation for 6-8 weeks and weekly chemo for the same length of time.

Regarding the PEG. We had thought it was an option to assist with keeping calories and fluids up during the weeks of an extremely painful throat. Carlos wasn’t going to do it because it has it’s own set of risks and he’d rather tough out the pain with meds. It was a choice of  awful or awful.
What we learned at the appointment was that is a secondary reason. The primary reason is much more daunting. When radiation begins, they will create a mask that looks like stiff mesh. That mask will be placed over his face and secured to the table during each radiation session. It’s job is to prevent any movement to ensure the radiation beams are hitting the exact spots they need to. If he looses weight during this time, the mask will become loose and allow movement and he could end up having to re make a mask and start all over, not to mention possibly hitting the wrong areas. On the 29th he will have a consult with the gastroenterologist to arrange the procedure to place the tube.

The dental exam is to be sure nothing major is brewing and to get a good cleaning. The radiation can damage the jaw bone’s ability to heal so it will be a long while before he could safely have any major work done. That appointment is on the 30th.

The Medical Oncologist will help us choose which chemo to use and the schedule along with answering more of our specific questions regarding treatment.

Today was a hard day for me.
I had to cancel attending Women’s Retreat at Hume with our church.
I had to cancel my plane tickets to see my dearest friend in Idaho for her 50th birthday. I haven’t seen her in a few years. I miss her a ton!
I had to cancel my plans to attend Kickback with our youngest. (our church’s high school camp I’ve attended for over a decade)

I am aware of how self absorbed that sounds. I’m not the one fighting cancer and having my throat burned to shreds. But I felt sad about letting go of those plans. Trading them in for watching my hubby suffer because cancer doesn’t care about these things is hard. So today I moped. I took a nap. I went out to lunch by myself with no makeup and a hat on. I’ve been a caregiver to our daughter for 19 years. I know what it takes. For me, it takes an occasional day like this. Now I feel ready for the next two days of appointments and who knows what else they will lead to.

While I was moping, I was mulling over one of my favorite verses: Jeremiah 29: 11-1229746997_10213812779247348_1114129936_o

I take comfort in knowing none of this catches God by surprise, but it’s catching me by surprise and I take a while to catch up with His plans for us.

I asked Carlos this morning how he was doing. He’s hanging in there. He’s not like me, he doesn’t talk through all the things. He says things like “well, this sucks”. He knows God is in control and fretting doesn’t help anything. I’m glad for that. It takes strength to have faith and let go of things you can’t control.

That’s all for now. Our list of miracles is growing, the way God shows up in the little things reminds us that He sees us and He leads us.

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City of Hope antelope Valley

 

March 23rd

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Cancer is a full time job. I mean, life in general is, but cancer doesn’t care how busy you are.

I opened my dishwasher around 10 a.m. to unload it.

It was around 5:30 that I actually got to the task.

I spent the entire day on the phone, emailing, sending records, requesting records, explaining and re-explaining every thing over and over.

There is a 5 cm by 4 cm tumor in my husbands throat, he can’t wait another 2 weeks for his radiation intake appointment, and who knows how long after that before treatment would begin. All of the doctors he has seen so far have rushed every test, squeezed in every appointment, and expedited results.  They all share the sense of urgency due to his struggle with swallowing food, his major voice impairment and his significantly reduced airway. This has all been done through UCLA and it’s been fantastic because everything is in their digital portal and they can share his records instantly.
With UCLA being a good hour away, and City of Hope (CoH) being five minutes away, he wants treatment locally so we are transferring care now.  CoH has been very nice and tried to be helpful, but apparently Cancer doesn’t care about Spring Break! So many of the specialists he needs to see are on vacation.

Long story short, it took a LOT of calls and just a few people willing to go out of their way to help. There was some holdup with getting records send over from UCLA, so all they had was the biopsy report and that didn’t give info on the size of tumor he has, so they didn’t see the urgency. Eventually some angel found out that he had seen a local Dr for that first visit (story here) and she called him and asked if he could validate the urgency. (I totally understand this. Everyone with cancer has a sense of urgency and would want to expedite. Normally I totally respect the scheduling, but this really is urgent. See video of his airway blockage here)  Well, even though that local Dr had done nothing more than a few second scope and noticed “something in there”, he knew back then that there was urgency here. Bingo! That’s all CoH needed and he is now scheduled for his Radiation Oncologist this coming Tuesday!

Now, that was a huge ordeal, but what happened smack in the middle is what brought me to tears. I got an email simply saying “…your medical insurance has been cancelled and a refund of your last payment is being issued…” uhm… I think I’m going to be sick… So I call my agent, leave a message, and freak out. She responds with an email saying “…so, none of you are currently insured as of March 1st…”  I felt sucker punched. Carlos and I both trying to gather payment records, any correspondence notes, and prepare for a call to both the insurance company and our lawyer. (We use Legal Shield and love it for things like this.) We might have both expressed some majorly displaced anger towards each other… it wasn’t pretty.

Basically in January during open enrollment, we switched all of us except Stacey and Robby to a new plan to be effective March 1st. We told our current plan we wanted to cancel three of us, and leave the two on the plan. No problem, new bill was issued, paid and confirmed. Apparently they denied that arrangement and failed to contact us, but instead cancelled all of us.

The reason… Since I was the primary person on our plan, and wanted to change plans, it meant Stacey and Robby were getting individual, not family, plans. When they went to do that, they started by removing them from our family plan, but since  it was after open enrollment, they couldn’t enroll them in their individual new plans. The computer flipped out and cancelled all of us from all plans, assuming all of us were outside of the open enrollment period.

Thankfully our agent and the Insurance rep was able to use the “qualifying event” protocol. A qualifying event is a list of circumstances that allows you to enroll in a plan outside of open enrollment. Our qualifying event was that we lost our insurance at no fault of our own. (that’s the key part right there… not our fault!)  So, we had to re-enroll all of us and they will retractivate it back to March 1st. PHEW!!  That was a horrible feeling!

As that was winding down, we got a call from the Dr to go over the PET scan now that the final report was in. There are a few goodies in his right lung that they need to watch. They will decide Tuesday if they look closer prior to treatment or if they hope the chemo takes care of it and look at it again after treatment. It may not be cancer there, but they couldn’t be certain it isn’t. As I passed this info on to Carlos, I saw his entire body sink. It’s heartbreaking to see.

On the upside, he was excited to be well enough for a quick RV trip with his friends to ride dirt bikes. His breathing gets labored when he exerts even a little (he noticed this while packing for the trip even) so he most likely won’t do much more than putt around camp, but he will enjoy the fresh air and good company.

Even in days like this, I see God guiding every step. Sometimes He lets me flounder on my own in a swirl of panic, then He reminds me He’s got this. He isn’t frantic. That’s all on me. When I let it go, peace comes.

The link to the scope video is here. 

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March 7th – 22nd

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The 7th
The week of waiting for the biopsy results was long.

One of the things she had said that day was that the tumor looks too large and invasive to operate. It would require way too much reconstruction if they did. So we did leave there knowing he was most likely going to have to have treatment along the lines of radiation and chemotherapy.

Carlos took the preliminary news really hard. I gave him as much space as I could. He slept pretty much the rest of the week and the weekend. I’ve learned long ago that he and I respond to crisis differently so I let him do his thing, but was also very concerned. I tried to talk to him about things we needed to take care of before treatment started, but he wasn’t ready.

I was having my share of angst. I wasn’t sleeping well. Every time I rolled over, my brain would shout “my husband has cancer” and I’d feel the adrenaline rush and sleep would avoid me.  If I was awake, I could control my thoughts. If I slept, my thoughts would catch me off guard. I snuck in naps but tried not to complain about my fatigue. I could only imagine how he felt.

The 8th
We have friends who have had similar cancer so I arranged dinner with them. He literally begged me not to make him get up and go. I told him that we either go to dinner where he can leave when he is ready, or I’d have them come to the house, then he couldn’t choose when it was over. Whatever works, right? The dinner helped a lot, he seemed to come out of the fog. I let him be for the weekend and I did some things with our kids while he rested and mulled things over.

The Dr. had been so confident in her diagnosis, yet we held on to that hope that she was wrong. “She did say it could be a rogue node that just got out of control, right?”  “She did say sometimes they are benign, right?”  We went about our usual things as much as we could but that nagging thought was hard to shake.

After 4 days of sleep and pondering, Monday came and Carlos went to have our taxes done so they’d be out of the way. It was good to see him doing things. He needed the distraction.

Then Tuesday came. On the 13th, a day before we expected the call, I was getting Stacey to the bus and a call from Carlos came in. The Dr. had called him.

The biopsy confirmed it. It is positive for cancer of the oropharynx. A PET scan has been ordered to see if it’s spread. The tumor is attached to a tonsil, the base of the tongue and the epiglottis.

Here is where God’s grace was so evident yet again. Since we got the call on Tuesday instead of Wednesday, we were able to get the PET scan arranged for Thursday.  When I called to schedule it, they were expecting my call and I didn’t have to answer a bunch of questions, they just put him on the schedule. Things were getting real.

I spent some time with my friend Google again and was making a list of questions. The day before the scan, he had to follow a no sugar, super low carb diet to be sure the scan was accurate. He had some work to do but we managed to meet for lunch.

We sat at that table and talked about things like “would you take a feeding tube if they say eating will be too hard?” “You should see a dentist to be sure your teeth and gums are in good health before all this starts.”  “We should start buying the ensure shakes now so we can have a stock and not a huge expense all at once when the liquid diet comes.”  “On the upside, at least we’re at the beginning of the calendar year so our maximum out of pocket for the insurance won’t start over in the middle of all this.” My nervous laugh kept the conversation light. But I lost it after we parted ways.

Who talks about these things over lunch??? People with cancer do. Wives whose husband has cancer do. How is this even us?

The 15th. 
The PET scan went smooth and we were back in the waiting mode. A few hours later we got a call from Dr Kim. She said she had been stalking his chart to see the scans as soon as they came in. God really did lead us to the best! She said the scan confirmed the tumor and three lymph nodes lit up. She was encouraged the nodes were on the left side only, and hadn’t gone to the other side of the neck. She assured us this is a highly responsive type of cancer. She said “if you have to have cancer, you picked the right one to have.”

By the end of the call, we felt better, not worse, even though the spreading to the lymph nodes wasn’t great news. She was confident he would respond well to radiation and chemo. Then she had us laughing when she said “you know, I really feel a connection with you guys, when I saw Carlos’ age on his chart, I realized he’s my dads age. I really want to treat you like I’d want my dad to be treated.” We had a good chuckle over that. I refrained from telling her I’m not old enough to be her mom though.  For the record, Carlos is 59, I’m 47. Ya, I collect vintage things…heehee.

The 22nd
We had to take all of our records to a surgical oncologist. It’s protocol for creating a treatment plan. We drove down to UCLA in Westwood during the heaviest rain California has had in years! It took over two hours to get there.

We saw Dr Elliott Abemayor and he was a gem! He walked in the room and asked Carlos if he knew why he was there. Carlos said “well, apparently I have cancer in here and you’re supposed to tell me how to get rid of it.” The Dr. said “yes, that’s right, but let me tell you this first. You have a very curable cancer. Do you hear me? You have a very curable cancer.”   An angel from the Lord I tell ya!

He did a thorough exam and another scope. He confirmed Dr. Kim’s assessment; that the tumor is too large for surgery. He feels fairly confident radiation and chemo will get rid of it. If anything is left, surgery would be discussed at that time.

SO, here we are. We will take his recommendation and all the records to City of Hope and they will coordinate radiation and chemo. We know it will be rough. His throat will be extremely painful. People describe it as chards of glass or razor blades with every swallow. There will be weeks of liquid diet. Some people do need a feeding tube in order to stay hydrated and keep calories up. His sense of taste will be damaged and things will taste horrific. Some things may never taste the same again. His hearing, teeth and jaw might be damaged.  Fatigue will set in. It is going to be hard. There are a lot of unknowns. We have to step forward in faith. Faith that the Lord is directing this journey and the people he puts on the path along the way, and faith that no matter how hard it gets, it is the twinkling of an eye in the scope of eternity.

We don’t have a timeline yet. We are currently waiting for City of Hope to schedule his radiology and chemo team appointments. We praise the Lord for a CoH branch just 5 minutes from home. 
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Totally fun right?!
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Worst rain ever!
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My brain. All the notes from calls and appointments and records are in here.
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“I will praise You in the storm”

 

 

 

There. She Said It.

—->>>>If you haven’t read the rest, here are the parts you might have missed:
Part 1 – The “Cold”
Part 2 – Just a peek
Part 3 – Strange things
Part 4 – I’m not (totally) new here

March 7, 2018

Carlos was happy to have the appointment set and getting eager to have this thing removed. He was still expecting it to be an infected tonsil that would have to be removed. In case I was wrong, I didn’t say much about what I thought it was. I did mention to him that I was concerned and pretty sure it was going to require surgery and some follow up treatment.

On the 7th we went to the satellite UCLA office and saw Dr. Irene Kim, ENT. Usually I ask friends and family for recommendations for doctors, but I didn’t want to tell too many people yet.  I picked Dr. Kim off our new insurance list and prayed she was the one we needed to see. God was totally directing me to her!

Dr Kim went over all his symptoms and did a thorough exam and a scope going through his nose down the throat. She explained every step and everything she saw, and was looking for. She had the images up on the screen for me to watch also. She noticed it bled when the scope touched it. Carlos had no pain. She sat down and told us she needed more tests but has seen this enough to know what it was. She said. “I’m not happy with the look of this and I’m concerned it’s not a good thing.” My eyes met hers and I knew we were on the same page.

Carlos asked some questions about his tonsil and if he could handle a dirt bike ride. She told him the growth had eaten his tonsil and there wasn’t much of it left. She said he could ride, but his airway is restricted so he needs to go easy.

She sent him to the lab immediately and set up a CAT scan in an hour and said to return to her after the scan and she would see him again to go over it and attempt an in-office biopsy. She now had his full attention. She just kept assuring him and told him to get the tests and came back. She had such a confident and warm demeanor, we both trusted her immediately.

Labs were quick and we grabbed lunch in the hour wait for the scan. We talked in code. “If it’s something bad…”
“If it’s just a surgery, we should be prepared…”
“If it’s something bad, what should we…”

He didn’t want to eat much.
I always want to eat much.

Back in her office, she got him in immediately. She had the scan images and let me record her explanation of what she saw. She has seen it before. The tumor is large, over 5 cm long. She also said there were a few lymph nodes that were twice the normal size. She’s confident it’s not a nice thing and she really wants to do the biopsy.

Due to bleeding and gagging, the biopsy attempts were so hard on Carlos. It took over two hours of attempts and resting and attempting again and resting again, before she had enough tissue. At one point Carlos asked if he could be put under and let her just take a big piece. She said that isn’t an option because it’s so big, they wouldn’t be able to intubate him, as it blocks most of his airway.  The option would be to do it in an OR and that way if the bleeding got out of control they would be equipped to rescue, but he’d still be awake. By God’s grace, she eventually got enough tissue to test it.

Carlos again brought up tonsils. She was trying to be cryptic and I finally said, Dr Kim, you can say what you think it is. So she said it. “I think it’s squamous cell carcinoma and I need the biopsy to confirm it.” Carlos isn’t as good a friend with Google as I am, so he asked what that was. “Cancer.”

There. She said it.

Now we wait for the biopsy report to confirm and give more detail.

Next Post Here



Getting his scope done and a few pics from the CAT scan so you can see “it”.

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He handled it all really well

 

 

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Without the orange circle so you can see it better.
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“it” has a face. “It” will be punched in the face.

I’m not (totally) new here

Previous Post here

While he was gone, I managed to hold down the fort just fine, and added the task of painting the entire inside of the house with CJ (our 24 year old).

In between painting and life with Stacey (www.highfivesforstacey.com) and being Robby’s chauffeur to school and work, I had a few peeks at my good friend Google.

Let me catch you up real quick on some of the things I’ve been through with the help of the internet over the last 18 or so years…
*Agenesis of the Corpus Callosum (Stacey, our 4th kiddo’s brain disorder)
*Status Epilepticus (also Stacey)
*Chromosome deletion on 3q (Also Stacey)
*Chronic lung disease (Also Stacey)
*Mitochondrial Dysfunction (Also Stacey)
*Dietary caused eczema (Also Stacey)
ok, Stacey’s list goes on so I’ll move on…
*Head trauma and CSF leak (Alexia, our oldest, at age 19)
*Chiari malformation (also Alexia,  I’ll share her story here another time)
*Triple Jaw fracture (Michelle, our middle kiddo when she was 10) (which thanks to Stacey I knew how to read an xray and caught it even though the urgent care doctor didn’t and I knew to take her elsewhere to be treated for shock and concussion and the fractures resulting in two surgeries. Another story I’ll share here later)
*Lymphoma scare (CJ, our older son)
*Major Sinus Surgery (Carlos)
*Adrenal fatigue (me)
*Severe anemia (also me – needing three infusions, another story for another time)
*My mom’s heart attacks and strokes

That’s not even all the things!

I tell you that so when I say I have a good relationship with Google, I mean it. I love to muddle through medical journals. I avoid opinions. I seek facts. I avoid hype.

So while Carlos was having a fantastic time, I already knew. Usually when I’m wrong, I feel it. Sometimes I push it aside and make sure, like when they thought CJ had lymphoma but it was cat scratch disease. We went through some of the tests, but not all, I felt the need to hesitate, to wait, to let things pan out on their own. I didn’t feel that way this time. I tossed and turned in my sleep. I just knew.

About halfway through his trip during a facetime conversation, I noticed if he turned his head to the side, his voice stopped.  I noticed certain sounds he had a hard time saying.  He sounded like he had a bite of mashed potato stuck in his throat. I knew it wasn’t food. I knew it was a tumor and I knew it needed to come out.

He had left on February 11th and would return on March 2nd.  On March 1st our new medical insurance kicked in. We had changed it back in late January, saying we could down grade our coverage a bit. Our insurance was costing more than our mortgage and was going up again so we switched it.  We reduced it.

While he was gone I talked to several doctors to see who took our insurance and who could also help us identify this thing. I chose one from UCLA in a satellite office about 45 minutes from us and scheduled an appointment for March 7.  I had a list of  symptoms, questions, and tests I planned to ask about, in case she missed my sense of urgency.

{Next Post Here}



Some pictures from his super relaxing trip!