(written by Sunny)

In the week leading up to the first chemo treatment Lindsie was feeling better and better. The nausea from radiation was quickly subsiding, her back was tremendously improved, and some days her energy was good. Going into chemo feeling strong is a good thing, but getting chemo when you're feeling good for the first time in a long time is a bit anxiety inducing. Nobody wanted to see Lindsie feeling lousy again, least of all Lindsie.

Thursday, April 2nd was the big day. Lindsie, Josh, and I headed in at 9:15 in the morning. There are always a lot of steps to Lindsie's appointments and I'm so impressed with how quick and organized the process at MSTI is. The people there really care about the quality of the experience of their patients and it shows in every part of the visits. First is always a blood draw to check Lindsie's platelet and white cell levels. Then we meet with Dr. Bridges and his nurse, Andrea. We go over questions Lindsie and Josh might have and then Dr. Bridges tells Lindsie what's happening that day and if there are any changes to her plan.

Lindsie had been having some trouble with her throat for a couple days and eating had been really difficult. Dr. Bridges suspected the steroid she had been on had caused thrush. He prescribed an anti-fungal med and a drinkable medicine to coat her throat to make eating easier.

He also went over the chemo drugs that would be given that day, the Neulasta shot for white cell growth that would be given the following day, and the Denosumab shot for bone growth that would be given the next week.

After that it was down to the chemo room. Each of the three drugs is infused separately and each takes an hour or so, so it's a long process. Plus they give her a steroid and anti-nausea drug, so that's more time.

While Lindsie was getting chemo the pharmacist came to talk about the drugs she was getting and possible side effects. Here are the highlights:

Pharmacist Meeting- 4/25/15

Dexamethasone:
-Steroid
-Will be given by infusion today, taken orally tonight and 2x tomorrow.
-Will be taken orally a day before the next round of chemo, the day of chemo, and the day after chemo.
-Taxotere carries a risk of pulmonary edema. Dexamethasone eliminates this risk and also boosts the efficacy of the anti-nausea drug that will be given today.

Taxotere:
-May cause muscle aches for 3-5 days.
-May cause extreme fatigue for a few days.

Granisetron:
-Anti-nausea. Will be infused with steroid today.
-It is metabolized a little differently in younger women and seems to last longer.
-Sometimes no other anti-nausea medication is needed after this. If nausea persists take Zofran every 8 hours.

The pharmacist didn't talk much about the Hercptin or Perjeta since they aren't known to cause noticeable side effects, but he did mention that Linds should be feeling markedly better about a week after chemo and that she should have two pretty normal weeks after that leading up to her next round of chemo. He also said that given her age she may take a little longer to lose her hair. Instead of 2-3 weeks after the first treatment it should be more like 3-4, or about 2 days after her second treatment.

The infusion went off without a hitch and Linds felt fine during and after. How the chemo would affect her in the days ahead still remained to be seen.

Mardie

4/09/2015

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(written by Sunny)

As we discussed previously, while in the hospital Lindsie received her first infusion of Herceptin (See Glossary). While finishing radiation she would be receiving weekly Herceptin infusions at MSTI in Meridian. The first post-hospital infusion was on Wednesday the 18th. The nurses and staff at MSTI are so kind and attentive. They want to make sure everyone is comfortable, informed, and taken care of. When Lindsie got situated in her chair her nurse brought over the softest, warmest, handmade blanket and pillowcases. A volunteer had made them and the nurses had decided they wanted them to go to Lindsie. It was so kind and Lindsie was very touched. She takes the blanket to every infusion and it's such a sweet reminder that there are so many people who care and are pulling for her through this, even those she doesn't know.

The Herceptin really doesn't have side effects which was super nice since the simultaneous radiation was causing some tummy issues. There was another infusion on the 25th and a meeting with Dr. Bridges. The plan for chemo was laid out and set to begin the next week. It would include the drugs previously discussed (Herceptin, Perjeta, and Taxotere) and the potential side effects were discussed again. Beyond having nausea, vomiting, body aches, and fatigue Lindsie would likely lose her hair between 2 and 3 weeks after the first treatment. Dr. Bridges was quick to point out that while there will definitely be side effects they wouldn't necessarily be horrendous and we'd just have to wait and see how Lindsie responded to the drugs.

The prospect of starting chemo brought with it a lot of unknowns. Would the cancer respond to this regimen? Would it help reduce bone pain the radiation didn't address? Would the side effects be terrible or manageable? How long would they last? With so much riding on this next chapter it's no wonder Lindsie was anxious to get started and get that first treatment, and all those questions behind her.

Mardie

4/09/2015

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(written by Sunny)

When last we left our protagonist she had just returned home from the hospital (Wednesday, March 11) and was working to regain her strength. After having two radiation treatments while in the hospital, Lindsie would need eight more before she could start chemo. Each day she would need to drive down to Boise St. Luke's MSTI since the machine in Meridian was broken. The first couple days going back to Boise were a little rough. Lindsie was still sore and it hurt to lay down and sit up again on the radiation table, but the exciting thing was she could do it! She could walk herself in, get herself on and off the table and walk herself back out. The staff at MSTI were so excited to see her improvement and made sure to tell her. Each day she was a little stronger and it was amazing to see the difference a few days could make.

Radiation is given on weekdays, so with Lindsie's first treatment given on the 10th her last treatment should have been the 23rd. However, on Monday the 16th Lindsie got a phone call letting her know the machine in Boise had also broken, so that was fun. On the 17th, Boise was back in business and treatment went forward meaning with no more hiccups she should finish radiation on the 24th and start chemo soon after.

On Tuesday (17th) as Lindsie and I were headed to radiation she happened to remember she was out of gas. But, come on, even when the gauge says the tank is empty we all know you've got at least a gallon in there. That may be true, but Lindsie had been driving on that hope for two days and had drained it dry. We were already on the freeway and didn't have a lot of options, but we were sure (optimistically slightly panicked) we could make it into downtown and pull right into a gas station. Well, we did technically make it into downtown, as in we lost power while exiting the freeway and coasted to a stop at the first light we hit. That van had nothing left. I hopped out and when the light changed I pushed it around the corner and into the driveway of a business. Now what? Lindsie had 10 minutes until her appointment, the gas station that had seemed so close was 5 blocks away, so 10 blocks round trip, and we had no gas can. Gimpy thought we should both walk to the gas station. As she started hobbling toward me I just laughed at her. Yeah, right! That wasn't going to fly. I told Linds I'd go alone, but as I started across the street I realized there was no way to make her appointment if we didn't figure out a better plan.

I flagged down the next car I saw and the nicest, sweetest couple pulled right over. I told them that my friend had to be at St. Luke's for radiation in 10 minutes, we were out of gas, and I needed to get to the gas station. The man asked if I'd rather have them drive us to the gas station or to MSTI. Now, I hadn't mentioned the MSTI clinic, only St. Luke's. Most people don't know what MSTI (Mountain States Tumor Institute) is unless they've had to go there for themselves or a loved one. I knew we were dealing with someone who understood. We decided to go straight to MSTI. The couple told us about his cancer and about her mother's cancer. They didn't ask much about Lindsie's cancer which I thought was very thoughtful. They were just so kind. I wish I could remember their names so I could find a way to thank them for not hesitating to help two strangers at a moment's notice. There really are good, good people in this world and we're finding that a lot of them seem to inhabit the world of cancer.

While we were in MSTI Lindsie's dad who was visiting from Utah and Josh came downtown, got gas in the van, and brought it to us at MSTI. The remainder of radiation felt pretty uneventful after that. The appointments only took about 15 minutes and Lindsie's side effects were relatively mild. On the 23rd Meridian's machine got fixed and Linds was able to do her last two treatments there instead of driving into Boise, which was a nice change. It also felt really good for Lindsie to know that she would not be seeing the inside of a hospital every single day. Girlfriend needed a break and some normalcy.

Mardie

4/09/2015

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(written by Sunny)

After Lindsie was home from the hospital and things felt a little more settled it was time to get organized for real. If the previous week had taught us anything it was that getting through rough patches takes a village, and an organized village at that. Josh called a meeting of the FriendsLikeFamily and we portioned out areas of work. Lindsie listened from her bedroom, but all she could hear was a lot of insane laughter because anytime we get together we will always waste way more time laughing than we will spend actually accomplishing anything.

After we got around to discussing what felt most important to get under control, we decided the following:

Jenni- Set up an online meal calendar so friends and neighbors who don't have access to our church calendar can sign up too. Plus, friends and family far away can sign up to have a meal delivered. She will also help Josh with some simple healthy recipes he can make for their family because he wants to make good nutrition a focus of Lindsie's care.

Mardie- Set up and manage the blog. Help Ava with her music practice and take her to music class when needed. Watch Vivi and Dex as needed.

Dr. Steve- Steve has Tuesdays free so he is the default Tuesday babysitter. He is so excited to take Vivi and Dex on adventures. His first day on the job he also had to take Ava to an appointment...where she promptly vomited all over herself and the floor. He spent the rest of the day doctoring her back to health.

Krista- Help Josh organize medical bills and insurance claims. Also, get all up in the grill of the insurance company when they deny claims. Go Krista!

Matt- Fund raising

Julia- Family calendaring and organization. She keeps the big wall calendar updated and schedules childcare/rides as needed. It's her job to know where everybody is and where they have to be when Lindsie and Josh can't be the ones doing it.

Amber- Preschool pickup and drop off as needed. Laundry and other jobs as needed. Also, surviving her last month of pregnancy. We didn't give Amber a long term job for now because this chick is going to need some serious looking after of her own in a few weeks and we can't wait to take care of her and that new baby girl!

Sunny- Medical mumbo jumbo and blog keeper upper until I can convince Lindsie to take it over. Which might be sooner than expected once she sees that mess I made trying to explain her days in the hospital. Fingers crossed!

The nice thing about this plan is that we can pull back as much of it as we need to when Lindsie and Josh can handle the day to day on their own, but if we hit another rough patch we have the scaffolding in place to be able fill in where we have to and hopefully function as a well-oiled machine.

Up until this point we had been handling everything except meals "in house", meaning our group did all the child care, errands, etc. Things were just too chaotic day to day to try to involve many other people. The ward has been bringing meals, which was awesome, but we also know they along with other people want to do more. Now that things are settling into a more manageable routine and everybody knows their job we can start scheduling other people to step in as needed. It is amazing to see the amount of people who want to help Lindsie and Josh in any way they can. They are so, so loved.

Mardie

3/20/2015

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(written by Sunny)

Okay, now that we've gotten Lindsie home from the hospital and tucked safely, yet somewhat painfully, into her own bed, let's go back to the day Lindsie found out she wouldn't be doing a hormone blockade, but would be doing chemo, but wouldn't be doing radiation. You know, before she found out she really would be doing radiation and chemo would have to wait. Except it didn't. Follow? Yeah, it's good times.

So, on Friday, March 6th when Dr. Bridges told Lindsie her cancer is HER2 positive and she would need to undergo chemotherapy he really didn't give her a lot of details. Knowing that Lindsie is a planner and she'd like to know what to expect following her treatments so she could plan in advance for her family, I put a call in to Dr. Bridges nurse, Andrea, and here's what she told me:

Chemo Drugs
• The drugs for chemo will be Taxotere, Herceptin, and Perjeta.
• Taxotere is a chemo agent designed to target fast-dividing cells.
• Herceptin is an antibody designed to interfere with the HER2 protein and stop cell division.
• Perjeta is another HER2 antibody
• Neulasta is a shot given the day after chemo. It promotes white cell growth.

The Process
• An echocardiagram is needed before Herceptin can be given as the heart can be affected in rare instances.
• Taxotere can cause an infusion reaction within the first 5-10 minutes. It's not a reaction to the Taxotere itself, but from the solution it is delivered in. The chemo nurses are trained for this and will get it under control immediately.
• A blood draw will take place before the infusion.
• Infusion will last a few hours

Side Effects
• You should feel great the first 24-48 hours because the anti-nausea drug you will be given is a steroid.
• The steroid may make you look flush the day after chemo
• You may feel bad 3-5 days after chemo
• Taxotere can cause joint/bone aches and mouth sores
• nausea, vomiting, constipation, or diarrhea are all possible
• headache and constipation from anti-nausea drug
• fatigue over time
• hair loss 2-3 weeks after first dose
• blood count lowered- this will be monitored
• nadir (lowest drop in blood count) will happen about 7-10 days out

Side Effects From Neulasta
• The pressure inside the bones can increase as the marrow produces more cells and it can be very painful
• Pain usually occurs 3-4 days after the shot

At the time of this phone call Lindsie was scheduled for her echocardiogram Monday the 9th and chemo was going to start Wednesday the 11th. With this info we were able to piece together a little bit of what we could expect life to look like once chemo started and plan for good days and bad days accordingly.

Mardie

3/19/2015

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(written by Sunny)

If the last few posts have felt a little chaotic and hard to follow, well, now you know what life was like in the days before and during Lindsie's hospitalization. Gratefully, Lindsie had improved enough by Wednesday (11th) morning that Dr. Bridges felt good about releasing her. After radiation and her visit to the future on her hover bed, she had her first Heceptin infusion while she lay in her hospital room. It took about 90 minutes, was painless, and had no side effects. After that we packed her up and had her ready to go home with Josh by 2:00.

Lindsie was still moving very, very slowly and still had a lot of pain, but she would be able to move enough to get to the hospital for her daily radiation treatments and that's all we needed in order to get her released. About 10 seconds after Lindsie got in the van to go home she looked like an entirely different person. There was light and energy back in her eyes and she was smiling. It was seriously like night and day. The nurses and other staff in the hospital really did work hard to take care of Linds and get her on her feet again (literally), and some of them were the nicest people you could ever hope to meet, but at the same time hospitals just aren't good for people morale-wise. It was so good to get Lindsie home to her family and her own home where she could recuperate in peace.

Mardie

3/19/2015

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(written by Sunny)

When we last left Lindsie she had completed one session of radiation. She had also been told Tuesday morning by Dr. Bridges that she wouldn't receive chemo until after radiation had been completed. However, when Lindsie was taken down for her sim on Tuesday we had met briefly with Dr. Kuhn and she said that Lindsie would be started on the drug Herceptin the next day along with continuing her 10 sessions of radiation. We'll get into Lindsie's chemo regimen later, but Herceptin is one of three drugs she'll be receive during chemo. This was a little confusing.

Additionally, Herceptin is the drug that requires an echocardiogram before it can be started and nobody seemed to know if the echo had been ordered since she'd missed her appointment on Monday. So much had happened in a few short days and the plan was still evolving so rapidly I was worried that something, like the echocardiogram, was going to be missed. Plus, even with her drugs drastically reduced Lindsie was still not completely aware of what was happening all the time. Here's a little story to illustrate Lindsie's head space. When we met with Dr. Kuhn Tuesday morning Lindsie was laying on a stretcher dozing in and out of reality. When the doctor approached her Lindsie's eyes got really big and she smiled this huge smile and gushed, "You look so beautiful and you smell so good! And that's not just the Dilaudid talking!" Yeah, right! Yes, Dr. Kuhn is beautiful and I'm sure she smells like an English garden in full bloom because I'm pretty sure everything the woman does is perfect, but Lindsie's reaction was just a little over the top. And by a little I mean a lot. She also gushed over the nurse's amazing handwriting when she gave Lindsie a form to sign. Homegirl was definitely visiting a magical place none of the rest of us could see.

So, with Lindsie in Cloud Cuckoo Land I was worried that someone was going to make a mistake on her rapidly changing case and she wouldn't even know it. After we came back up from radiation I asked Lindsie's nurse about the echo, but she didn't see it ordered. They left a note for Dr. Bridges that he would see when he rounded the next morning and I planned to get to the hospital before the Herceptin infusion just to make sure things went as they should. Things felt a little chaotic, but it was kind of nice that Lindsie was only partially aware and therefore couldn't stress about it. But that didn't mean I couldn't.

When I walked in Wednesday (11th) morning Lindsie was having the echo right there in her hospital bed. That was a huge relief. Right after that she was taken down to radiation again. This time they brought up something called a hover bed to make transferring easier. It's not as exciting as it sounds. I was hoping for something they borrowed from the future, but it was really just an air mattress. They put it on the stretcher uninflated, Lindsie walked herself to the stretcher and laid down on it, and they wheeled her down to radiation. That's where the magic happened. Once she was ready to be moved to the radiation table they inflated the mattress and pulled her on that over to the table. It was a softer, gentler process than the backboard. Still painful, but a definite improvement. They deflated it during radiation, then reinflated it before moving her back to the stretcher. When we got her back to her room and she went to get on her own bed it started rolling away from her and she almost fell. Seriously? The guy who did the echo that morning had unlocked her bed to move it and had never locked it again. I was pretty sure at that point that if we ever wanted Lindsie to feel better we needed to get her out of that hospital, stat!

Mardie

3/19/2015

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