The One Where There is a Wall

There is a wall in cancer treatment, I think in any treatment actually. It is kind of two fold: One you are as low as you can get ... you do not feel like you can get any lower; and two you actually feel like you have run full force at a wall. Mom hit the wall this week. The good news is that she is engrafted. The transplant took, now whether it put her into remission is another thing, we have to wait 100 days for that test. But her transplanted cell seem to be working in her body to build her immune system back up. Her counts look great. She feels like shaz.

They explained like this to us: Mom's body is acting like a computer right now, it has crashed and needs to reboot. Her heart is firing wrong, her lungs are breathing wrong, her gi track is working wrong, her hair is falling out, her brain is working wrong, her speech is working wrong, her lips and mouth are dryer than anyone should have to experience, her temp is working overtime, her energy is being used to repair the organ function and she feels like crap. She even admitted yesterday she feels like crap. Her words exactly "I admit I feel like crap." Where she used to be able to walk all the way around the block of the East Wing. She can make it down the hall right now. This is not bad news, they expected this to happen, but frankly it does not make it easier on her. Mom is tired, she sleeps a lot. She is understandably a little frustration with being in the hospital for the last 2 weeks.

But hitting the wall means she is at the bottom of her treatment, and now she will start to climb. As her counts go up, her energy will go up. As her body fights, she will feel better. She is on the up swing. I was proud of her for eating solid food yesterday for the first time in days.

So Mom hit the wall, or the wall hit her, hard. But she is climbing out of it. Fingers crossed and prayers she can go home soon. I know once she is home, in her own bed, with her own shower,with her own tv, and her own food, she will be feeling better.

Oh goodness

So I went up to grab Mom's laundry today. She is having a kind of rough day which translates into me having a bit of a rough afternoon thinking about her. I was sitting at my desk and clicked on my Reader feed. I had too many unread blogs to catch up on. I like things to be empty so when it said I had 274 unread blogs my head exploded ... I digress.

Well my friend from church wrote a blog that had me snorting; fixed my afternoon right up! This is what she had to say:

It is all I can do not to respond to every Facebook update I see using the phrase "Your mom....."

For instance, a friend wrote "Lansing Ward potluck tomorrow. The theme is "Soups and Breads". Bring your favorite soup or bread. Hope you see you there!!"

I want to reply: " Your mom is a soup and bread." or "Your mom is a potluck".

Another update from a friend "off to Moab for the weekend with liz and a yurt." My (desired but not actually written) reply: "Your mom is as yurt."

Sometimes in real life I forget that there is no "Edit > Undo" function. Example: last Sunday when I was participating in an object lesson in RS. A few of us sisters were standing in a circle using our hands to hold pieces of yarn the RS Prez was winding around- you know, demonstrating how connected we were....Well, my ladyfriend standing next to me said "My piece of yarn is loose." My response? "Your mom is loose". What's particularly awesome about this example is that I found out about 30 minutes later that her mom was starting chemo the next day- so probably not the best time for a your mom joke- or maybe the best time for a your mom joke, it's hard to tell.

I had the chance to hang out with some church ladies Saturday writing cards to people who maybe needed a card (I did not get one ... sad day!) but I wrote her one that said "Your Mom is writing a thank you card." I personally think it was the best time for a 'Your Mom' joke! Plus I do not know that I have ever been called a 'ladyfriend'; I really liked it! And all I have to say, Emily, your Mom is a ladyfriend!

The One Where There Was Excitement

Mom's doctors told her before she went in a few weeks ago that they really like a boring life; they want patients that they do not have to see often because life is treating them with boredom. They do not like excitement. Excitement during a transplant is bad. Boring is good. Mom has been bored stiff until Saturday.

The shots they give her to promote her stem growth, neupogen, really hurt. It hurts going in, they bruise something fierce, and once they start working they hurt the body. But what these shots do is make the baby stem cells grow which, along with the transplanted cells, make it so the cancerous cell that have been killed can be replaced with new nice cancer-free cells. This is good, especially in a transplant like Mom had. Well they affect Mom in giving her body spasms. These bone spasms are primarily in her spine, then rest on her chest. The spasms started last week, got pretty bad on Saturday, and Sunday were less than stellar. Another side effect is a fever that Mom has right now, which is rather high. Any time a transplant patient gets a fever they send him or her down to xray for a chest xray to rule out pneumonia. Mom does not have pneumonia, however they have not ruled her out for getting it because of how sticky her lungs are. Additionally they gave her an echocardiogram which showed that she has atrial fibrillation or a-fib. This means that her heart has an extra flutter even though it is beating strong. Her resting heart rate got up in the high 170's which is not great. It is not has bad as it could have been, but they called in a cardiologist to check her out. They all agree that these issues are a result of her cell counts going up. This is a good thing, but her body should not be reacting like this. To treat the a-fib they gave her amiodarone which kind of kick started her electrons to fire correctly in her heart. They also gave her a rider of magnesium and potassium as they were lower than should have been. The amiodarone started working almost right away. When I left Sunday her heart was beating at around 90-100 which is alright. If she were not in the kind of room she is in, with the HEPA filter, she would have been transferred to ICU to get the cardiac treatment she is getting now. 

While I was there for a few hours Sunday I watched a parade of doctors and nurses come though at rapid pace to ensure she was alright and to fix what was going on with her. Dr M. actually reminded Mom that they do not like excitement, rather they want things boring. Mom was not allowed to be in bed yesterday, but on the bright side she was excused from doing her walks yesterday. Is that a bright side? 

The good news is her counts: In the last post I mentioned that her neutrophil count was 0, her white count was 0.2. Sunday her neutrophil count was 100 and her white was 0.7; so they are in the rise, which is causing some of her side effect issues but that also means that if they can get these other issues under control Mom can feasibly come home next weekend. I am trying to think positive about it but not get my hopes up. Life has to get boring again in Mom's room for that to happen. So everyone: fingers crossed, good thoughts, plenty of prayers, and thank you!!

Side note: The whole time I was sitting there listening I had to be grateful that I watch Grey's Anatomy so I could understand what they were saying! Thanks Christina for specializing in cardio!

The One After The Transplant

Mom has been in the hospital now for 11 days. Hopefully she will be out in a week or so. She has had a few bad days. But overall she is doing alright. The chemo hit her pretty hard this time. She was not super sick last time; but the chemo was not her friend at all. The night before her transplant Colleen and I took her girls in to see Mom. They played with Grandma for a while, showing off how much they love her ...

Then on the day of her transplant Sissy went up to see her and gave her some lovin as well. That line in her right chest is where she gets all of her treatments done.

Here is a pic of Mom during her transplant. It is not so taxing as one might think, however it does smell bad. Mom is sucking on a sucker because it tastes bad to her. Deb said it best "Imagine creamed corn and fish." Gross right? For days.

I went up to see Mom today, this was her attempt at smiling for a picture. Bless her heart.

Here are the (not so graphic) details. If you do not want to know then I suggest you just look at the pretty pictures of Mom again with 3 of her 5 grandchildren. By the way the other 2 grand kids have been up to see her too, but I was not there to take a pic. 

Last Thursday was her transplant given by cute (married) nurse Ben. We were told by Mahmoud, the transplant tech, that the cells they collected 3 years ago have been stored at -195 C which was like -315 F or something crazy like that. They thaw them to about 98 F but they are still cold going in. The DMSO causes the bad taste in her mouth and the smell of creamed corn. They had 6 bags of stem cells this time. The transplant took about 90 minutes ... the smell lasted days. Mom was tired the rest of the day, but had many visitors to share the day with. The next day the chemo kicked her trash. She was not feeling good at all. Sadly the next day I got sick so I could not see her for a few days. However, she has been nauseous and very very tired. Yesterday her numbers dropped, as we knew they would, so she has no energy. Her neutrphil count is 0, her white blood count is 0.2. Her red count and platelets are heading down too. They have her platelets today, she will have a few more blood transfusions before her numbers will start going up. The lack of blood counts is what makes her so tired ... well that and the fact she has cancer ... and just had chemo.

One side effect of this treatment that is new that she did not really expect is that she is weepy. She is not depressed, she is not sorry for herself, she is not even really sad about anything. She was not really weepy last time that I remember. Actually Mom is a trouper. She really is one of the strongest women I know. She makes a decision and goes for it. She is not one who second guesses herself. She knew what she signed up for this time, having done it before, and she knew it was going to be hell (my word not hers) and she chose to do it anyway. I love that she wants to fight. I love that she is fighting. I love her. 

What can she expect in the next week? Life is going to get a little worse, then it will get better. Her numbers will hit rock bottom. She will have more blood transfusions. She may start getting sores in her mouth, throat, esophagus, intestines, or stomach (knock on wood this does not happen.) She will start to lose her hair next week. Some of the other side effects of chemo are not really blog appropriate, but use your imagination on how sick she could get. So far, knock on wood, she has not contracted any stomach viruses; she got one last time and they do not give her any meds for it, it has to go away on its own which is miserable. When the patients get this they put in place contamination protocols where those who come in contact with her have to wear gloves and masks and the kids probably would not be able to go see her. So it could be worse, not much but it could be. I can imagine if Mom is reading this now: "Really Steph, it could get worse? Tell me!!" 

She still takes walks around the floor, though she gets more tired quicker than she did. I was proud of her today she went a little longer than she did for our walk yesterday. She said she feels like she is getting slower, she is. But I am proud of her. It is hell. And she is a fighter. 

The One Where Everyone (else) Gets a Haircut

Last Saturday we gathered to get some haircuts. I have never been so envious of someone else's good fortune. I know, I know it is just a haircut. However when a person is used to REALLY short hair and currently has 8" of hair she may get jealous of haircuts. 4 more inches ... give to take.

LoMo, Sissy, Mac and Deb all got haircuts. LoMo, Sissy, and Deb donated theirs to Locks of Love.  Colleen and Candice had donated earlier. Jealous! But mostly proud. If you ask Sissy why she cut her hair she says "I gave it to my friend, who is short, and has not hair because she is sick." 

Then we went out to eat so Mom could have a really good salad, something she does not get while she is in the hospital or for the 100 days after. 

LoMo before and after

Sissy before and after

 

 Mac  during

Deb before and after

 CoCo after

The three girls after

Playing with Mom at the hospital last night

The One Where She Got Unlimited Popsicles

Mom had a good first day over all. Pleasant? Not so much, but not the worst day ever in her cancer treatment. We had to be there at 7:00. Mom and Dad got there earlier than I did and by the time I got there she was already back being prepped for surgery. They installed a central line in her right chest. This will be used for most of her treatments. She has an IV in one port, another port they use to take blood daily, and the last port is used for chemo and her transplant. It is kind of gross to look at day one, until she can take a shower and wash everything off. This took longer than we expected because they did not start her line until almost 9, but we did not know that. Imagine sitting for 3 hours waiting for news on the simplest procedure she will go through and thinking the worst because there is no news. No news is not always good news! :)

While she was in there, I went up to set up her room; got her all unpacked so she did not have to do it later. She took some cute pictures of her grand-babies and a scrapbook with all of her family with her, so I had those set up along with her quilt when she arrived.

She got up to her room around 11:30, got dressed, filled me in on the details (because they do not put you to sleep for that procedure; the idea makes my toes curl!!!) She was tired, and I had to get to work, so once she was settled and knew she could order some lunch I left. Dad stuck around for a while. After lunch they gave her her first round of chemo. They do it a little different than last time. They made her suck on ice chips the first 20 minutes, then gave her chemo which took 20 minutes; during this time she got to suck on Popsicles the whole time, followed by 20 minutes of ice chips again. They have found that if they do this while getting their chemo there is a lower chance of getting mouth, throat, and stomach sores later. At least they have found that when the sores do come, they are not as bad.

After this she took a nice long nap, waking up around 6 to order dinner. I went up with a few things she needed around this time. One of my old mission ... well we were not companions, but I do not know what else to call her ... has a company called Happy Chemo to help people when going through cancer treatment. Ginger came up to meet Mom, sang her a song, and took off to meet some other patients. Mom, Dad and I took a walk after that (she has to take 3 a day) and then I took off. When I left they were going to look at her line because it seems to be bleeding more than it should be, but it was not a huge concern.

She gets her second round of Popsicles today ... during another heinous round of chemo.

I am tired, I went to bed early last night after doing some much needed dishes. I fully admit to taking a sleeping pill and slept all night! And through my first alarm. Oops, but I still made it on time for my early morning meeting today. Yesterday was not such a bad day considering.

The One Before the Transplant

Mom has cancer. It is multiple myeloma which is a blood cancer (related to bone marrow). It is treatable but not currently curable. She was diagnose in 2008, and went through a stem cell transplant later that year. This transplant put her into remission for three years, when she had a recurrence of cancer earlier this year. 

In the last few weeks she has had a lot of test run. She has had 27 vials of blood drawn for a barrage of blood tests, she had a kidney test, full body bone scan, bone marrow biopsy, pulmonary function test, she had to have dental and other exams too, and I am sure I am missing something. Her tests all came back with good news. If any of the tests came back abnormal she would not have been cleared to have a transplant. Her numbers all look great. In face the doctor said that if their tests were not so advanced the cancer would be undetectable. This means it is the ideal time to do the transplant. One interesting thing is that her cancer spots have moved a little; last time her cancer spots were primarily in her spine and shoulders. This time they are on her scalp, left shoulder and left hip.  

The treatment is harsh, unpleasant, painful, and taxing on the person. The previous transplant was harder than this one is expected to be. Last time she collected her stem cells before the transplant occurred. This process is called the harvest. They gave her shots to promote growth of new baby stem cells. These shots did things to her body that were painful to watch, I cannot imagine what it was like for her. The good news is that she collected enough cells for two transplants. The reason this is doubly good is that the harvest is kind of a one shot deal. At her age it is unlikely that they will ever do that again. 

Her last transplant was rough. She was in the hospital for 18 days total. She is going to do the same thing this time, and they do not expect her to be out much before 21 days. So tomorrow morning she checks into the hospital at 7:00. She will have surgery to have a central line (pick) put in place this is a good thing because they have a lot of blood work to run, she will have her chemo through it, her transplant and blood transfusions  will be through it as well. This prevents her from being stuck with needle multiple times per day. 

Soon after this surgery she will be given enter first round of chemotherapy. She will be given a second round the next day. She then gets one day off, but stays in the hospital. Thursday will be her transplant day. They will bring the cells she collected 3 years ago, that have been cryogenically frozen, to her room. They thaw them out next to her bed. They then hook the bags up to her like they would an IV or blood. It smells like creamed corn. She says it tastes like creamed corn. We will never eat it again! If they put it in too fast or slow her body gets cold or hot. She has to suck on candy so that the chemical taste does not linger in her mouth. 

After this she will be in the hospital while the chemo does its work. She will have sores in her mouth, esophagus, and stomach. She will start to lose her hair; her hair will continue to fall out over the next few weeks. Her blood count will drop which will require her to get different blood transfusions, depending on what is low that day (plasma, red, white). Her white count will drop so low that she will not be able to fight infections on her own, which is why they keep her in the hospital. Once her counts start going up, she will be evaluated a few more days then released. She has to stay in semi-isolation for the next 100 days to avoid coming into contact with people who are sick. 

Her taste buds will die a little. Nothing tasted good to her except chocolate. Do not worry; she was given a 5lb block of milk chocolate to munch on over the next few months. She has to be very careful what she does eat because of the microbes on food. She can only eat salad if we prepare it carefully and she eats it right away. She cannot eat food commercially prepared unless it comes out right away.

She cannot be around anyone who is sick. So while she is lonely because she is isolated, it is better for people who have been or are sick, or take care of someone who is sick to stay away from her. This is not to say the visitors are forbidden, they just have to mindful and use their best judgment. 

Last time when she was getting ready for her transplant we all shaved our heads with her. This time we are not doing that; rather Colleen, Debbie, Ains, and Lottie all donated their hair to Locks of Love or Pantene's program. Candice did it too, a few weeks ago. I really wanted to donate with them. But apparently my hair does not grow fast. I have been growing it out for 2 years ... it is still kind of short. But I'll get there, so will Kate. I started taking prenatal vitamins so it will grow faster! EDIT: I cut Mom’s hair short last night for her stay in the hospital. Barry, Patrick and Everett all shaved their heads with her.

So it is going to be a rough month(s) ahead. Mom has told some of her pals to come here for news on her, so if you do not want to read up on her cancer treatments I encourage you to skip them! I promise not to be too graphic, I promise to try to be honest even if the news is bad. We could all use good thoughts and prayers sent our way. 

Watching someone go through this treatment is hard. I cry often, sometimes I cry for no real reason and cannot stop. And I am not the one with cancer. It is a disease that affects everyone in our family. So thanks to everyone who has offered help already, I promise to let you know if anyone of us needs help! 


Written 1/8/11