Discomfort

Tammi's uncomfortable. Really uncomfortable. Her liver is hurting, and her abdomen is full of fluid. And despite all her discomfort and pain, and despite all our miraculous medicine, no one seems to be able to receive her. 

After a couple trips to St. Mary's ER and 5 paracentesis that offered little help, we've taken to harassing doctor's offices. The GI doctor who might be able to provide some answers isn't available until December 27, and that just won't work. So after several days of nonstop calls and help from social worker friends, the appointment has been moved up to Dec. 16. 

It still doesn't seem soon enough when the one we love is suffering, but we're glad it's closer. It's also made us wonder about all those who travel this journey without advocates to do the harassing. So we remind you, if you know someone wrestling with cancer, help them. This is hard.

Cranky Liver

Apparently Tammi's current symptoms are from an angry liver. Her pet scan shows that her cancer is relatively inactive (which is a good thing!), but her liver is experiencing some cirrhosis, most likely from all the medication she has been on. She'll go to a GI doctor to help manage the symptoms, needing to have a paracentesis and fluids until it's under control.

She'll also be starting an oral chemo pill. Her tumor marker numbers are growing, which seems out of line with what the pet scan is showing. But Tammi has always been special, and they want to keep those tumor marker numbers in check even while they work on her liver. 

So we have a new problem that will lead to new doctors, but is something we are hopeful can be controlled. Continue to pray for Tammi's strength while we encounters new bumps in the road. And be grateful for your liver, doing work you never realize, until it gets mad. 

A rock in the road

While we were home and together for Thanksgiving, we noticed Tammi's tummy looked bigger than it should (Tammi has no tummy, so a bigger tummy is a sign of a problem). Hannah insisted she get to the doctor while we were all there with her. A paracentesis and a PET scan were scheduled. 

Tammi has had to have her belly drained five times since Thanksgiving. She feels pretty terrible, all signs that her body is telling her something is wrong. Her PET scan was this past Tuesday, and we're awaiting results today to find out what that something is. 

She had a couple of months of rock-free walking there. And we're glad for that. But now she needs some prayers to get through this next thing. Please pray for answers, and solutions, which will inevitably require both medicine and mercy. 

We'll let you know what we find out.

CT Scans continue to be good

It's a strange journey when you know that "cure" is not the word you're looking for.

Clear. Small. Maintained. Unchanged. These are the words we rejoice in. 

Tammi continues to have scans every month, to ensure her tumors don't begin to grow again, and she's at the doctor every week for blood level checks. She takes daily hormone therapy pills to keep the cancer in check, and continues to maintain a stint in her kidney to ensure all is working well. 

The pill makes her feel bad some days, and other days she's fine. She has to be careful about her immune system, but also has to be careful to live the life she's fought so hard for. 

So continue to pray that every checkup is boring. When you see Tammi, know the journey continues, and that we are grateful for that. It's your encouragement that keeps her going to every checkup, and taking every pill. Keep the encouragement strong, friends. And tell Tammi if you need some too. She's glad to pass on all she has received. 

207 Days of Medicine and Mercy...

After 207 days of weekly chemo treatments, 3 times weekly shots, monthly bone strengthening treatments, surgery for kidney stints and plural drains, pain treatments, oxygen machines, endless doctor appointments, and ceaseless prayer, there is good news.

Last week Tammi had a bone scan and a CT scan, to check the progress of her treatment. These are her first scans since her initial diagnosis on January 1st, and the emotions around waiting for the results have been hard. 

The last time these scans were done, doctors made faces and whispered and shook their heads in sadness. So it's no wonder this day began in tears, filled with worry for what might be. But the day ended in tears also, of another kind.

Her doctor read these scans, and described them in one, beautiful word. "Boring." 

Her scans were boring. There wasn't anything interesting or of note on them. Her cancer is not gone. But the tumors that were threatening her bones and kidneys and threatening her soft tissues 207 days ago have been shrunk to a non-threatening level. 

Tammi's treatment will continue. But it will be easier. For now, there is no more intravenous chemotherapy. Now there will be a daily chemo pill to maintain her progress and allow her body to strengthen again.

Friends, medicines make miracles possible. But we are certain your prayers led Tammi from light-post to light-post these 207 days. These 207 dark days were survived through your prayers, your encouragement, your faith that inspired and was inspired by Tammi's. This journey isn't over, but a mountain has been overcome, and the valley looks so sweet. 

For this time, we will celebrate. Please, keep praying, and celebrate with us!

Dear God -

Thank you.

Thank you.

Thank you.

Amen.

Whiplash

That's what it feels like. Tammi had a bad week. They couldn't get her cell counts up high enough for her to safely take chemo. So she went a whole week without it. She didn't feel great (imagine your body trying very hard to reproduce it's own good cells, and not being able to...it's exhausting). And Mother's Day was coming. All of us kids were coming home and she didn't want to feel bad while we were there.

But there it was. A bad week.

Hannah and Hallie stayed to go to the doc with her on Monday, to check her cell counts once again. After an ungodly wait, we learned the counts were up. But still, a nurse told us to come back the next day, that the doctor wanted to speak with us before giving chemo again.

In hindsight, I'm not sure what we were worried about (I mean, there are plenty of things to worry about, and worrying is what Dye ladies do best). Tammi worried that this was going to be the day they told her they'd have to back off the chemo, that her body wasn't taking it well enough. Hallie and Hannah worried that they'd seen something in her blood during a tizzy the nurses went into the week prior. Maybe an infection of some kind that would snag the whole treatment.

But as we met with the doctor that Tuesday morning, she looked at our eager faces awkwardly and simply said, "Everything looks great! Let's get some chemo!"

And we were silent. Staring at her. Wondering if we had heard right. 

Im summation, the doctor said, shit happens. Sometimes there will be a bad week. Sometimes blood will look funny under the microscope. Sometimes you'll just feel like crap. And oftentimes, during these sometimes, everything will be just fine.

Chemo was had. Lunch was enjoyed. Another sigh of relief was breathed. 

When the doctor doesn't know why shit happens, we do. And we are grateful for the prayers of ya'll that get Tammi through bad weeks.

Pretty Kidneys!

Tammi had to go in early this morning to have the stint in her kidney replaced. The stint was originally put in back in January before chemo ever started, because cancer cells were squeezing the pathway between her kidney and her bladder and they wanted to make sure it didn't become blocked, preventing her from expelling the chemo they gave her. (Medicines go in, they have to come out!)

A stint like this has to be replaced often to prevent infection. So, she got a new one this morning, and while this is a very unpleasant experience, her doc was able to tell her that her kidney looks just fine. The stint will be needed for a while longer while this path continues, but initial fears about hurting kidneys seem to be no more!

We are grateful for good news, and that Tammi's kidneys are looking pretty. 

Steady she goes...

There haven't been too many medical updates to post lately. Which is a good thing.

Tammy takes chemo every Tuesday, and goes in three times after for immune boosting shots. She's extremely tired after her treatments (and a little goofy, this is called "chemo brain" and is a real thing....though we think she's always been a little goofy...). She has some nausea and friends are bringing her ginger candies and fresh mint which seems to be helping (drugs can only do so much). Other friends are taking her for her shots every couple of days. 

For all these things, we are grateful.

And we're grateful for a time that feels a little more "steady" along this road.

(A little reminder, if you want to visit, wonderful! Tammi needs and wants visitors. But please, please don't come on Tuesdays! She is pooped after he chemo treatments, and really wants and needs to sleep. Any other day is good!)

Get Low!

It's working! The chemo is doing it's job. Kicking Tammi's butt in the process, but it's working.

Her "tumor markers," these things that show up in her blood to indicate the cancer is present, started at over 600. The cancer was very present.

As of today, they're at 200. That's a huge drop!

They need to be under 36 to be "safe."

So keep praying that mom's numbers get low! We are so grateful for these beautifully awful chemo drugs.
 

Chemo break/Easter Break

It's Tammi's week off chemo! Her doctor has scheduled her for white cell boosters throughout the week like "usual," but then she's off! Tammi and Buff are driving 5 hours to Kansas City to visit Hallie and her husband Nick for Easter, and be able to worship with the congregation they've been watching very Sunday online. 

We're grateful for a doctor who believes family time is as important as medicine. And for the strange coincidence that Easter weekend happens to be her weekend off chemo. 

Stay healthy Tammi! The Easter Bunny is coming!

Breathing easier!

With a drain for Tammi's pleural effusion (that Vicki comes to drain during lunch hours, thanks Vicki!), and the chemo taking care of some of the fluid in her abdomen, Tammi is able to breathe better!

The constant oxygen is less needed, and she's been walking around some without it. 

Iowa City - Second Opinion, Same Opinion

Tammi is confident in her oncologist, but it'd be impossible to get a diagnosis of this weight without having a second opinion.

Sounds simple enough, but in a small midwestern town hours from a major city, this isn't so easy. Her oncologist is part of a medical group that most other oncologists in our area are part of, so their opinions, their advice and resources would be the same.

Somehow, probably due to the persistence of her family doctor who kept calling (thanks Dr. Carrier!), she got an appointment in Iowa City, with a great oncologist who was willing to review her case. 

We drove to Iowa City hopeful and hesitant to hear what another doctor with fresh eyes might say. 

And it's the same.

He would recommend the same chemo drugs she's on, and is encouraged by her progress with them. 

He recommended we stay the course, to keep going until her tumor markers stop dropping. Once they stop, another path will have to be discerned. But, there is no way to know when that will be or what the next course will require.

We're relieved by a second opinion being the same opinion. But Tammi, being the hopeful person she is, was still kind of hoping for a miracle. Alas, there is no shortcut on this path. So we'll just try to continue to be glad that there is in fact a path.

Zzzzzzzzz...

Tammi is tired! It's making her crazy to be so tired. She wants to be up. Wants to go to Dalton's baseball games. Wants to clean the house and do those "normal" things we all curse having to do. 

But she's tired. And she's tired because 5 courses of chemo are running through her body, killing ever cancer cell in site. That must be tough work. So the tired is okay. 

Sleep Tammi, the dusting can be done later. The work most needed to be done is happening within you. Let it. And rest.

Finding your voice

I can't imagine a patient going through all our mom is going through by herself. 

(Side note: if you know someone going through cancer/chemo, and you're not sure they have family or friends around, check. This is too hard to do alone.)

Part of the reason you need others for this journey is simply because there is too much. Too much information. Too many decisions. Too much talk. Too many guesses. 

It's hard for a patient to own her own voice.

How can she make decisions for herself, if the doctor, the person in the white coat, is saying something she doesn't understand? We've structured the medical system of our country to be one in which medical professionals have the knowledge and the voice, and patients are supposed to listen and do as they're told. And that's a bunch of crap.

Because just last week, in the midst of mom's "good days," our visiting nurse noticed mom's temperature was a little high. She told us to let the doctor know, and so we did. The doctor wanted us to come in right away, for fear that an infection of some kind had presented itself. And so we did. 

That doctor then, with no other testing of any kind, told mom he'd like her to be in the hospital for a couple of days, to use IV antibiotics to kill whatever was causing the fever. And we were devastated.

Into the hospital? On these rare days when she feels good? No thank you.

And so we did something that isn't advisable to everyone, but is notable to everyone. We said no. We weren't going to go. We asked for more oral antibiotics, and said we were going home. And then we did. And we went home and watched more funny movies. And laughed about stupid things. And enjoyed home.

So we're not encouraging everyone to reject doctor's orders. But we would encourage you to take control of your own body, and your own healthcare, and that of those you love. Advocate for those without advocates. And doctors, look at the whole picture, the whole person sitting in front of you, and not just the numbers. We're grateful this doctor let us leave his office with understanding. More understanding would be a good thing.

Good days

I've been hesitant to write this post. Because this post is going to say, "this is good!" and the pattern of this journey has been, good is followed by bad. So I've hesitated.

But after almost two weeks of being "okay," I have to post. 

Last week was mom's "off" week, the week she gets no chemo so her body can catch back up, and prepare for more to come. She spent last week feeling okay, going for short walks, and finally, by the grace of God, eating!

We were able to turn her oxygen down just bit, and she could even move around the house without that dreaded thing on her face for short periods of time (most of them unintentional, as her chemo brain keeps forgetting when she takes it off!). 

For these days when mom feels "good" even in the midst of bad. We're grateful. 

Chemo is hard.

Sometimes, you want to fight. Sometimes, you want to rest. This will be remembered as a rest week. 

Three rounds of chemo is hard. It's working, which means it's really hard. Mom's blood pressure has been low, which makes it hard for her to get up and do her favorite things (like walk around Target and touch things). To make the week more difficult, her nausea medicine wasn't given during her chemo (grr...), so she felt terrible Tuesday and Wednesday. We were able to get another version of it via prescription, but who likes be nauseous?

Nausea and low blood pressure, with a little chemo brain and fatigue, and this was a good week to rest. We're grateful she was able to, and are praying for more energy, and less "icky" this coming week, and mom rests from chemo this week.

Round 3 of chemo is a go...

Despite her low blood pressure, and almost too-low blood counts, mom is getting chemo anyway! Why? Because she's freaking awesome, that's why.

She'll have to be careful this week, take her two booster shots to keep her counts up, and get lots of rest, but praying the "go" for chemo is a good thing.

Rest, mama, rest. Let those drugs do their thing!

Chemo works, visitors wait! (2.14.16)

Despite the two booster shots mom had this week post-chemo, her white cell count has crashed again. Her oncologist was really trying to keep her numbers up, but this chemo is wicked and wonderful stuff. This, with the combination of the lasix drugs she's on, has also done something weird to her blood pressure, making it really low. Today Hannah and dad took her to the ER to get some fluid and try to bring that blood pressure up (the drive to Galesburg in the blizzard helped in this!). Because, who doesn't want to go to the ER on Valentine's Day?! 

We'll figure out with her oncologist tomorrow if there's something she can do to bring her counts back up before chemo day on Tuesday, or if we're stuck waiting again.

For the time being, we're going to ask that she have no visitors. It's a hard thing to ask, because your visits are what keep her smiling. But the risk of infection is too high with no white cells to chase off all our unintentional germs. She's wearing a mask, and Hannah and dad are taking very good care, but we can't be too careful.

We have to keep reminding ourselves of what her oncologist said in our first office visit, this is a marathon, not a sprint. The run is easier with friends, but even then sometimes (at least if you run like Hallie, maybe not Hannah) you have to pause and walk. Mom's going to walk these next couple of days. Keep watching this site, and hopefully she'll be ready for more visits very soon.

Chemo #2! Go Chemo Go!

Tammi at her second chemo treatment 2.9.16. She says "I just want to jump for joy!"

Tammi received chemo treatment #2! This was long awaited, as she missed the last two rounds because her cell counts were too low, and her lungs weren't strong enough. 

But today was the day! And, it started with GOOD NEWS! Good news has been rare thus far, but your prayers have may have turned the tide of bad this week. 

Her "tumor markers" (defined in a way we can understand: counts in her blood that tell the doctor how much cancer is in her body) were HALF as much as they were before her first chemo treatment. That means, there is less cancer than there was before. That means, the chemo is WORKING!

This was a big decrease. It's partially because of the medicine, but it's also because of the mercy of your prayers.

Tammi says, "I know it's because everyone is praying."

She's right. KEEP PRAYING! God is good. Chemo is amazing. We are grateful.

Chemo...postponed

Tammi had her first round of chemo on January 19, and hasn't had one since. Her second round was postponed because her cell counts had dropped too low (which is common with chemo treatments, and is actually a sign the chemo is working, even though it's a pain in the rear). She was admitted to St. Mary's in Galesburg to bring those counts up, and she did!

The next week when she returned for chemo again her oncologists decided her lungs were too weak to proceed. The cancer is causing fluid to build up in her pleural space, which makes it difficult to breathe. So, she has to be able to breathe to have the chemo. She needs the chemo to fight the cancer that's making it difficult to breathe. You see the problem...?

We went to St. Francis in Peoria last week to have a semi-permanent drain put into her pleural space, that will help to continually keep the fluid off her lungs. All went well, and if all continues to go well, those lungs will keep getting stronger and she can get back into her chemo schedule. 

Right now she needs REST! And BREATH!