Exit Appointment with Dr. Boyer

I got a PET scan to check for cancer and some blood tests last week. I met with Dr. Boyer today, and he said everything checks out. So far, no signs of cancer. My blood counts are good, and my hormones are fine. He spoke as though he thinks there's little likelihood that the cancer will come back. I hope that's true! As part of my exit appointment, they gave me a tile with a saying about how "cancer is so limited." It was nice of them.

I still have to go in for scans and appointments about every three months, still. But, at least it isn't everyday now.

Day 100--A Milestone!

The doctor said he normally considers bone marrow transplant patients to be ready to return to their every-day life at day 100. I was doing pretty well, plus, I was about to lose my job, so, I went back on day 84. I've finally made it to 100 days post-transplant, though, and I'm glad to be done with it (except for follow-up doctor appointments that I can't avoid). Hopefully the whole ordeal of cancer is in the past. Actually, I'm not 100% here at day 100. My hair is growing back, but I still have some sensitivity in my skin, some minor irritability in my intestines, and some acne-like problem on my face--I guess when you get a 2nd birthday, you also have to go through puberty again. Also, last week my white blood count was "critically low," but today, it was just "low." Hopefully everything will return to normal soon.

Day 93: A Very Long Day

I left home for doctor appointments at 5:45 this morning. I was to have a chest x-ray, PET C/T scan, blood tests, pulmonary tests and a doctor appointment. I began working on getting all this scheduled two months ago because today was my only day off for the next two months, and the doctor requires all these tests around day 100. I can't miss work, so today was crucial.

As has been the case every time with the Bone Marrow Clinic, when I got there, half of the appointments were either not scheduled, or scheduled wrong. I did a lot of complaining to try and get them to fix the problem. They finally got it worked out, but I ended up spending 14 hours away from home for all of it. Not only this, but because of the PET C/T (which they finally did from 3-6pm) , I ended up not eating for over 24 hours.

To compensate me, the clinic gave me a couple of cash cards for The Point Restaurant and a $10 gas card. I'd still prefer it if they would just schedule things right.

To top it all off, my phone battery ran out. I got home, thinking all was well, and when I plugged in my phone, I got a message saying my toe moved (yes, THE toe), and they need 5 more minutes to scan it again!

Red Toe

I'm finally done with radiation treatments. Hopefully my cancer treatments are now all behind me. They radiated my toe 20 times, and now it looks like it got a sunburn. It feels a little like that, too.

Now that I look at this, I guess I have to say I don't have the best looking feet. Oh well.

As a treatment-exiting gift, Katherine bought me a new camera. The meaning behind it is that I now have many good years of health to look forward to, and I can use this camera to capture it all. It's a Panasonic, and very nice (10 megapixel). Plus, it's smaller than the old one. I'm looking forward to trying it out.

I wonder if the new camera has automatic red-toe reduction. Obviously the old one doesn't.

Day 71

Darin had a doctor appointment today. Everything looks great. He will have a bunch of tests and another pet scan around day 100, but the doctor gave him permission to go back to work on Feb. 18th. He also gave him permission to kiss me, but it was revoked until I get over my cold. He just had his 14th day of radiation. Only 6 more to go. Woo hoo! Darin's ready to go back to work. He's turning into a frazzled house-wife. The other day he told me he now understands why mommies need to get away.

Devin dislocated her elbow for a 3rd time last week. The doctor finally showed Darin how to put it back so we don't have to keep running to the doctor.

Day 27 --Another doctor appointment

Actually it ended up being two doctor appointments. They called at noon asking if we could come in before his other appointment at 2pm. They sure need some help coordinating and scheduling.

The appointments went very well. One was with the Lymphoma doctor, one with the Bone Marrow Transplant doctor. Although the doctors wouldn't say much about his progress, the receptionist was surprised that Darin was only on Day 27. When Darin asked his lymphoma doctor if she thought he would be able to make it back to work before his termination date Feb. 18th, she said she didn't think he'd have any trouble with that, but told him not to tell the bone marrow doctor she said so.

His appointments are getting scheduled further and further apart. Now he gets to go two weeks before his next appointment.

Radiology called today to set up an initial appointment (this time around anyway) to get started on radiation.

Day 22

Darin has been doing so well that yesterday when he asked when he could get his line out, the PA said she thought he could do it right away. So today we went in bright and early to have his line taken out. It went fairly quickly. They just gave him a local and cut away part of the skin that starts growing onto the ring just under the skin. Then they just pulled it out. He said the only thing he felt was the local. He was nervous beforehand, but it all went just fine.

While he was gone, I started talking to a man probably in his 50's who was waiting to have a line put in. He was just starting the process to get a bone marrow transplant, and was about to get his 3rd overnight treatment. I told him a lot about the process, because usually the staff doesn't tell you much until right before it happens. He seemed encouraged to see how well Darin was doing after such a short time.

We had quite the snowstorm to drive home in. That makes the 3rd time Darin has needed to come home from the hospital during a snowstorm. It's almost like he plans it.

Day 20

Darin is doing quite well. His appetite seems to be coming back. He had a doctor appointment Friday, and got in trouble because he wasn't eating enough. He had lost 14 pounds in just 3 weeks. Tonight he asked for 3rds. Almost back to normal.

Jadyn and Devin are getting excited for Christmas. Now that Jadyn knows all about the days of the week and calendars, she's been counting down the days 'til Christmas. She loves the snow. She thinks if it's snowing, it's Christmas. I went outside with her and tried to make a snowman, but the snow wouldn't stick together. So we decided to have a snowball fight instead. Jadyn also made some snow angels.

Potty training with Devin is still slow-going. The other day, she told me "I'm never doing that again!" She's also been as bouncy as Tigger these days. She did have a rough day today. She threw up about three times. Grandma said she would eat and then throw up, eat and then throw up, eat and then throw up.

Day 15

Yesterday Darin almost got admitted again. He was having trouble breathing, and the doctor wasn't sure how to treat him. He wasn't sure if it was a virus (although he was tested for the three main ones, and they were all negative), or lung damage from the chemo, or rejection to the transplant. He couldn't give medication for rejection because it might make a virus worse if that was what he had. They put him on oxygen, but that didn't seem to help. He finally sent Darin home with an inhaler to wait and see if other symptoms might develop. After a few hours, I asked Darin if I could call someone for a blessing, and after the blessing he immediately began to breathe easier.

He's still tired today, but breathing much better. We have another appointment tomorrow, but I suspect the doctor will be surprised at the improvement.

Darin needs to have care 24 hours a day for a couple of weeks. The kids and I are happy to have him home 24/7. Even if he does sleep most of the time. The kids are used to spending a lot of time in our bedroom, but we're trying to keep the bedroom as sterile as possible, so they are frustrated that they can't come in our bedroom to jump all over Dad. He does come out to be with us occasionally, so they clamor for his attention and sit on him every chance they get.

Day 12

Darin came home today! Yeah!

Day 9

Darin's stem cells engrafted today! Huge milestone. That means that his stem cells are starting to produce white blood cells.

Day 7

I haven't felt like doing much for the past week. Today I'm feeling a little better (at 7pm). I've had a fever of between 101 and 103 for days. They keep drawing cultures, but are not finding any infections. They just keep rotating antibiotics thorough me to try and clear the fever - no success yet.

I got a rash like acne on my back from being in bed so much. They started medicating it, and it is much better now.

I've thrown up about once every other day on average. Today, so far so good. I need to order some food though. So wish me luck. Sometimes it feels like I'm getting a little better each day.

love Darin

Day 4, only 96 to go

Darin's been pretty sick for several days. Today through Wednesday are supposed to be the worst, so hopefully we can get through these next days quickly.

The nursing staff could be better. Since Darin has stuff coming out of both ends, he needs the nurse and/or aide to clean things out soon after they happen. The sight and smell only makes him more nauseous. When we asked them to do better, because they were only dumping the output, not cleaning it, a nurse came in and chewed Darin out like he was a little kid doing something naughty. He yelled, "Get off my case!" and I said "Try to be nice to him." I hope he doesn't get that nurse again. She doesn't seem to have the patience to work in a unit like this. I think they are a bit lazy here. They only have 2-3 patients each, but they act like they are so busy, and when I go out there, they are either talking or surfing the net. It annoys me that he should have to ask for things that should be automatic here. He also has been getting cramps in his stomach the last couple of days, and he's complained about it to the staff, but they didn't do anything until they were specifically asked if there was anything they could give him.

We're hoping he can come home next weekend.

Day 0

Happy Birthday Darin! Today he got his stem cells back. It smells a little like tomato soup and cream corn.

This is a pretty good description:

Autologous stem cell transplant

What is a stem cell transplant?

Most stem cells are in your bone marrow. You also have some in your blood that circulate from your bone marrow. Bone marrow stem cells turn into red blood cells, white blood cells, or platelets to help your body stay healthy. If your bone marrow is attacked by a disease such as leukemia, it can no longer make normal blood cells. In a stem cell transplant, healthy stem cells are placed in your body through an IV to help your bone marrow start to work right.
When the stem cells come from your own blood or bone marrow, it is called an autologous transplant.
When the stem cells come from another person, it is called an allogeneic transplant. The donor may be a relative or a complete stranger. The important thing is that the donor's immune system markers are closely matched to yours. This is most likely when the donor is your brother or sister.
Stem cells can also be found in your bloodstream and in the blood inside a newborn's umbilical cord.

When is a stem cell transplant needed?

Stem cell transplants are used to:

• Treat diseases that damage or destroy the bone marrow. Such diseases include non-Hodgkin's lymphoma and Hodgkin's lymphoma, leukemia, multiple myeloma, and aplastic anemia.
• Restore bone marrow that has been damaged by total body radiation and high doses of chemotherapy used for cancer treatment.

Other uses for stem cells are being studied, such as the treatment of diabetes, Parkinson's disease, sickle cell disease, and thalassemia.

How do I know if I am a good candidate for a stem cell transplant?

Your doctor will consider your overall health and your age. People who are good candidates usually are younger than 70, do not have other diseases such as heart disease or diabetes, and have a normal kidney and liver. Your doctor will also consider how much your disease has grown and how aggressive your cancer is. People with aggressive cancer that has spread to many areas of the body are not usually thought to be good candidates. Your doctor may also consider whether you have cancer that has come back, such as relapsed non-Hodgkin's lymphoma.
How are stem cells collected?

It depends on where the stem cells come from. If they are taken from the bone marrow, a small amount of the liquid portion of the bone marrow is removed through a needle inserted into the bone. This is done many times to collect enough stem cells for the person getting the donated bone marrow. This is called a bone marrow aspiration. The bone marrow cells are put in a blood bag. They are often frozen for future use.
If they are taken from blood, the growth factor G-CSF may be used to stimulate the growth of new stem cells so they spill over into the blood. G-CSF is a protein that is produced naturally in the body. The blood is removed from a vein and passed through a machine that separates the stem cells. The machine then returns the remaining blood through a needle in the person's arm or through a central venous catheter. This way of collecting stem cells is called apheresis.
In adults, most autologous transplants use stem cells from blood. In a child, the decision whether to use cells from the bone marrow or the blood depends on the size of the child.

Why are chemotherapy and radiation therapy used before a transplant?

Before you have chemotherapy and radiation, you have blood taken and stored (banked) for later. Then you have chemotherapy and radiation to destroy the diseased cells in your bone marrow and the rest of your body. This gets rid of the cancer cells in your bone marrow. Later, when you get your stored blood cells back, those new stem cells will be able to take over the job of making new blood cells.

How are stem cells transplanted?

A central venous catheter is inserted in your chest. The stem cells travel from the blood bag through the catheter into your blood, and to your bone marrow, where they will begin to produce new cells in 1 to 3 weeks. During this time:

• You may be in isolation and given antibiotics to prevent or to treat infection. Destroying your bone marrow cells with chemotherapy leaves your body unable to fight infection.
• Your blood will be tested often to check the levels of red blood cells, white blood cells, and platelets in your body.
• You may need to receive several transfusions of blood cells and platelets until your body begins to produce its own.
• You may need more antibiotics or other medicines if you get an infection.

What To Expect After Treatment

An autologous transplant usually causes fewer problems than an allogeneic transplant. Some people are able to receive part or even all of their treatment in an outpatient clinic. Even if you need to be in a hospital, you will not usually have to stay longer than 3 weeks.
Severe, often life-threatening infection can develop after a stem cell transplant. You will need to take antibiotics for several months to prevent infection.
Your immune system may take 1 to 2 years or longer to recover after a transplant. Bone marrow aspiration or biopsy is used to check your bone marrow. You will need to have many immunizations updated. Check with your doctor to find out which immunizations you will need.

Day -1

Darin's doing fairly well. He has been on IV fluids since Sunday, following his world record throw up. Today is his Day of Rest. Tomorrow he gets his stem cells. It will take 7-15 days for them to engraft.

My dad died Sunday. I got the news from my sister while I was driving home from the hospital. He died in his sleep in a nursing home. They (my Stepmom and the Bishop) finally talked him into letting them put him in the home on Friday.

Day -3

Only one more day of chemo, but it's getting tough. Darin throws up at least once a day now. Just now, he threw up so much that the nurse walked out the door with the tub saying, "Marilyn, you gotta see this!" and when he came back, he said it was a world record. We laughed pretty hard about that. They've already given him quite a bit of anti nausea pills, so they gave some IV Benedryl, which is also supposed to help. It's making him see things floating in front of him. It's actually kind of funny.

Other things of interest are that a few nights ago one of the IV tubes came apart and spilled all over his foot. They got it cleaned up before it burned his skin. And then the same nurse forgot to turn of the IV, so he sat there swishing and spitting for an hour and a half, and then looked up to see that it wasn't even going.

Mostly, it's just a lot of TV watching and sitting around.

Day -6

Not much new today. He was given two new chemos today. He's had the first one before. It makes him a little nauseous, but it was pretty well controlled with antiemetics. All food was kept down today. The second one is secreted into the mucous, so during the infusion, he had to rinse his mouth out with water every 10 minutes to avoid mouth sores. It was only for about 2 hours, so not a big deal. These infusions have to be given every 12 hours for the next three days.

Day -7 Last Round of Chemo Begins

Today was pretty uneventful, until I left to go home to the girls. Just an hour after I left, I called Darin and he said he had a splitting headache. They thought it was a reaction to the chemo, and also a hangover. They put alcohol in the chemo to help dissolve it, because water just doesn't do the job. I hope the Bishop doesn't find out, he'll take away Darin's temple recommend. j

Darin's sister, Connie, showed up to visit him just in time to watch him through three stages of throw up. The loud stage, the quiet stage, and the juicy stage. Maybe that's too much information? He did say he got his appetite back after that. But, he's already feeling the chemo, and he said his mouth was burning and he felt like his head was going to explode.

Day -11 (The day of stem cell infusion is day 0)

We've spent the last few days "spring cleaning" the house. We have to clean absolutely everything. So far, in addition to the regular cleaning, we've cleaned the blinds (and we have a ton of windows, many up very high), vacuumed and shampooed all the carpets, and vacuumed the air vents. We still have to do a lot of dusting, like on top of the fridge, on top of the cupboards, and other shelves, pictures, appliances, etc. This will all have to be done weekly, so we removed several things that are dust collectors. I'm thinking I'll have to make myself a schedule so that I can get all this cleaning done each week. Also, every day I'll have to clean counters, sinks, handles, and even the shower. Darin won't be able to be in the room when I'm doing any of this cleaning. Lucky! He even gets out of changing diapers! We got rid of plants, too. It seems that his number 1 enemy will be plants. So much that he can't eat fresh veggies or fruits. And if he goes outside, on his way to a doctor appointment, since that's the only place he's allowed to go, he has to wear a mask.

Darin's sister is bringing his mom over to see him today! We're excited to have Grandma Bronson, Aunt Connie, and Cousin Chelsea over. I think this is the first time Connie has come over. See what we gotta do to get her here! Of course, she said she's bringing treats for the girls. I think she is trying to be the favorite aunt.

Postponed

Chemo was postponed until Monday or Tuesday, whenever Darin's white blood cell count is low enough for the stem cell collection that they will do soon after chemo. It's all getting a bit confusing now. From now on, Darin will be going to the hospital daily. There are a few days when a nurse might come to give Darin a shot that will cause the stem cells to move from the bone marrow into the blood for collection. We'll just have to be on our toes now.