Another week of waiting...

Met with the oncology doctors today. We have appointments next week to meet with the liver specialists to discuss the process of removing the tumor on the liver. (Most likely we’ll implant a device that will not allow blood flow to that part of the liver….killing it and allowing the healthy part of the liver to grow). This takes about 2-3 months before we can do the actually surgery. In the mean time we are also meeting with the radiologist and start radiation on the breast tumors.

It is a balancing act for all the doctors at this point. They want to keep the AML from appearing somewhere else or growing back (I’ll have small doses of chemo to help) but everyone agrees the liver tumor take precedence over anything else.

The bone marrow transplant has been put on hold for now. I need to completely heal from the liver surgery before we can even start talking about that. It is going to be a long spring and summer.

On a good note: I am feeling healthy and great! It is sometimes hard to remember that I actually have cancer and I still need to be careful. I can go out and have a “normal” life for awhile. I’ve been trying to help more around the house, going to the grocery store, picking up kids from school, having lunch with friends etc. I still can’t go places that are enclosed in with large amounts of people and have to stay away from sick friends and family. (common sense stuff!)

Thanks to the Huntzinger’s for dinner last night. It was wonderful!

New hair

Hair is so overrated until you don’t have it. Going bald is something that is hard to explain to someone unless you’ve done it yourself. I have adapted to my new baldness and tried to embrace the changes in my life. I’ve actually enjoyed wearing scarves, hats and bandana’s to keep my head warm (or to protect my head) and getting ready in the morning is much easier. Who would have known?

However…I wanted to get a wig for special occasions or for those days when I wanted to look and feel “normal”. On Valentines my mom took me to lunch and then out wig shopping. I will admit I was a little nervous to go only because when I think of wigs I picture creepy gross Halloween wigs from the party store or “old lady wigs” that you see in a retirement home that don’t fit right or are sliding off. HA

If you ever need one don’t be scared…wigs have changed A LOT and are really cute now. Here I am with my new wig. I tried to match as close as I could to my original hairstyle and I think I did it.

Chemo has been put on hold next week and we are meeting with the radiologist for the breast tumors and probably a liver specialist to tackle the tumor there. Things change from week to week and I have decided not to make plans and just live in the moment.

Tests, test, tests...

What a day! Carla and I were all over the town today (IMC and LDSH), starting at 7am and getting home for good at 5pm. Because of the liver concerns, the liver specialists wanted a series of tests, MRI, Bone Scan, CT and removal of a nodule on her side for biopsy. By the way, the biopsy procedure hurt like a "blankety-blank-blank".

There was a bunch of hurry and wait situations all day which allowed me to get work done while she was in tests and between tests...wi-fi is my friend.

Now we are in a quiet period waiting for results and treatment plan, which we should know late next week. Carla can take a break from tests and treatments for a few days and just relax.

Feel free to give her a call, text, email, post on the blog. We love you all and appreciate everything you all have done and are doing.

Thank you mama Pam for getting Callie off to school and doing our laundry. You touched my underwear...ewwwww.

Change never sleeps

Seems like every turn we make "change" is in our face. We had hoped for more direction and certainty, yet found "change" talking to us instead. Today the oncology doctor gave us an update from the liver board meeting.

As Carla mentioned, the growth must be removed, however, the path is not simply go to surgery. Liver surgery will require some preparation and more information. Carla will be doing tests all day Thursday to scan her for any other potential liver issues in the body, and will have a biopsy on another growth that is on her backside. Once we have the results of these tests, this will set the path for the liver surgery. There are other prepartory things to do which can take 2-3 months, so surgery is not pending at this point.

The liver issue takes precedence over the bone marrow transplant, since the risks of liver surgery are much higher post transplant. However, to keep the leukemia in remission, chemotherapy must continue while preparing for liver surgery. Balancing act for the doctors.

Carla may start chemotherapy next Thursday, pending the results of all the tests being done tomorrow and Friday.

Family update: McCall has a soccer tournament in St. George over this weekend that she is looking forward to. Callie continues to be active in jump team and gymnastics. Today, Callie's Grandma Rosie, my mom, had lunch with her at school, and tomorrow she gets to have lunch with Grandma Pam and Grandpa Dennis, spoiled. :)

Thank you to our neighbors the Kamerath's, Patti and Ruth, and the Garret's/Petersen's for bringing our family dinners over the past week. All of you are such sweet people. We love you all.

A slight change of plans.

My recovery is going well. All of the tumors have shrunk from the chemo and the doctors are happy about that. However, the tumor in my liver did not shrink and the doctors are concerned. I had a liver biopsy before I left the hospital last time to help the doctors decide what to do. (The tests results came back the tumor could just be a benign growth but we are not 100% sure of that.) Regardless of what it is… it needs to come out. The doctors are meeting Tuesday to discuss my care with a liver surgeon, liver specialist and all oncology doctors. Again, I have stumped them with my prognosis and they are learning from my case. I would assume I will go in for surgery next week sometime.

I am hoping to be in the hospital only a few days and then get some time home to recover. I'll have radiation on the other tumors and zap them free from my body. This should put me into remission and I will start the last treatment of chemo and then have the bone marrow transplant. (aughhh...so much to think about) The next few months are going to be hard but I am willing to fight this battle.

I have enjoyed being home with my family this week. I’ve actually been able to see friends, help with housework, drive to the store, relax and have some normalcy. Jeff and the girls have been awesome to help where I need it.

Thanks to all of you again for the cards, kind words and positive thoughts.

THANKS TO ALL OF YOU!!! :)

I thought it only appropriate that I add to the blog this week. First let me say thanks to all of you out there that have helped in so many different ways. I can’t name everyone but you know who you are. Picking up kids from school, driving to activities, taking over my PTA responsibilities, bringing dinners, helping with birthday party planning or just bringing us some ice. It is the little things that really have made this process so much easier for us. We are so grateful for the outpour of support we have received!!

Some of you have asked what else you can do to help. The best answer I can give is take the time and go donate blood. The Red Cross is the best place to donate for it to be received at LDS Bone Marrow Clinic. You can also register to be a bone marrow donor (a swipe of the cheek is all that is needed) and you might be a match for someone in the future. For those of you who have already done it…THANKS!!!

When you are going through something like this you really experience personalities in people. You really know who your friends are and you know right away which family members you can lean on. There is no time for negativity or mean spirited thoughts towards past issues or concerns. I can have only positive thoughts during this treatment and that is what I am going to do!!!

I am doing well and trying to adapt to my new “routine”. I am still waiting to wake up and realize it was just a horrible dream. As most of you know the first round of chemo went really well. I handled it better than I thought and was excited to come home so quick. As most of you have read from Jeff’s posts I got a sore throat and headed back into the hospital in real pain. I was admitted immediately and told I had a sever case of Mucocitis (which are growths in the mouth, tongue and throat). I wasn’t able to swallow, talk or eat for a few days so I was frustrated with everyone. Jeff was a life saver translating for me and after a week or so I was starting to feel better. Who would have known that it would have taken 2 weeks to get me home again. (yuck)

This week I am able to do more and maybe even see a few people. My numbers are up and I am looking forward to enjoying the week before I head back for my second round of chemo on Valentines’ Day. (romantic huh?) I am hoping only 5 days and then back home for my “nadar” weeks of getting strong.

Please continue to send your support, good vibes and well wishes to us. I know that they help!!

Home for a week or so

Let me give you a quick update... Carla came home today. She persuaded our doctor to let her come home today instead of tomorrow if she promised to eat and drink enough. She ate really good today given the fact that she wasn't allowed to eat yesterday because of a biopsy procedure. Her throat and mouth condition has almost completely healed. Next week we have a few appointments and figure out the plan.

Carla will be doing some posting on the blog this week while she is home. Please call her, email, etc to see how she feels for visitors before she has to go back for treatment. As usual, if anyone is sick please know that a phone call will have to suffice.

Also, her blood counts are recovering great now. Her neutraphils were at 1.4L and rising. Now she has some protection and is NOT completely quarantined, but still has to be careful to stay healthy.

Thank you Lund family for bringing dinner Friday. Our Friday night got a bit out of whack with hospital scheduling and children activities. Our neighbor Patti was kind enough to make sure that the food was in a "secure" place until we got home.

Please know you can call, email, text me (Jeff) with any questions. Sometimes it may take me some time to respond, but I will. jhenny2000@comcast.net

Looking to get of out of this place! The hospital has many conveniences, food, drink, room service, save your life on demand, but nothing compares to home. Every day Carla is improving and getting over this condition. Although there is still pain, she is now drinking more and taking baby steps to eating. Having a sore throat does not really want to make you eat any sort of meal, but she is trying different things. Hopefully Friday or Saturday we will have Carla home. She and I went for a pretty brisk walk around the floor today, I was impressed...that's what it takes to get out of there. "keep movin".

Please keep in touch with Carla through the blog, text her, call her phone and leave a message, email her, send a card. She was really expecting that her treatment recovery period would have been used to visit and communicate with people while she was home, but this condition got in the way.

Meanwhile, Callie had jump team, jump rope, practice today. Last week she slightly twisted her ankle at jump team performance, but shows no signs of it now as she runs and plays. Callie went right from practice to a short hike up Millcreek Canyon with some of her girlfriends. Yesterday, McCall had a Futsal game, soccer practice, and basketball practice, and still gets her homework done!

Right after dinner, we went to the hospital to visit our woman. Carla's demeanor always brightens when she sees her girls walk thru the door. Callie walked with Carla thru the halls holding mom's hand and telling Carla "I love you mommy."

As we finished our walk, McCall was eye-balling the wheelchairs. Being so late, there wasn't much traffic in the halls...I said "wheelchair races" and we picked our "cars" and went for a few laps. After walking mom back, Callie got on my lap for a ride. "Whose kids are those?" Ours and I am damn proud of them. :)

Thank you Phippen's for dinner. Although we have only known your family for a year, your kindness and love makes up for lost time. Aunt Shirley, I owe you a phone call.