Statistics

Cliff did something a few weekends ago that you should never do when you are sick. He researched his cancer, which gave him statistics. I really hate statistics because they aren’t a guarantee on what your final outcome will be. Most people offer us encouraging stories about others they know that are survivors of Non-Hodgkin’s Lymphoma. What most people don’t realize is that Cliff has Non-Hodgkin’s T-Cell Lymphoblastic Lymphoma. This only affects 2% of patients that have Non-Hodgkin’s Lymphoma. The 5 year survival rate of this cancer is 40%-50%.

We are getting to the point in Cliff’s cancer treatment that we start talking about life after treatment. We have to decide if Cliff needs to take the prevention meds after radiation. Most of you are thinking yes you take the medicine because its prevention and you don’t want the cancer to come back. The problem with the medicines is the laundry list of side effects and the long term damage it causes. Dr. Turner told us that he and his colleges simply don’t know what Cliff should do. The last time his doctor treated someone with this cancer was 15 years ago, and before that one other guy 5 years before. This was also treated on a different type of chemo. There isn’t enough research to say yes you need the meds or no you don’t with this early stage of lymphoblastic lymphoma. Because of the rarity of his cancer you can’t get enough patients to do a study to find this answer out.

When Cliff is in the hospital he is surrounded by death. He is with other cancer patients who have been battling for awhile and it’s time to accept that nothing else can be done.  We watch their families stand outside their rooms discussing how to make them comfortable. One week I watched this patient sleeping and his wife and daughter looked completely exhausted, but still reading the bible to him. They stood by his side the whole week until he finally passed away. I wondered how they felt. I can only imagine that they are relived, sad, and angry.  This last stay in the hospital a lady was passing away in the room behind Cliff. Her family was in and out of the hospital the whole week and eventually made it to Cliff’s room to talk. I think he talked with everyone in her immediate family. Her husband walked by one night and I was lying in bed with Cliff. He told us that he’s so happy to see us in bed and fighting this together. It was like he wished he could crawl in bed with his wife and lay there with her, but he couldn’t. He had so much sadness in his eyes. He didn’t know what to do with himself. The lady eventually went to hospice and we found out last week that she did pass away.

This leaves me with what my greatest fear since this begun. What if it comes back? The doctor can’t make any guarantees if the cancer will come back or not. However, he reminded us that Cliff has something if he ever needs it….a sibling bone marrow match. The chances of his sister being a match were 1 in 4. When I got the news she was a match all I could do was cry. When I asked Cliff how he feels about her being a match he says fortunate. She is our hope if the cancer comes back.

I think about the statistics and the dying patients and they do scare me. You can’t go through this journey and not think about death. However, I truly believe that Cliff will be okay. Cliff is a fighter and even on his worst pain days he is doing the best he can to put a smile on his face for all of us. I don’t think Cliff will ever know what an inspiration he is to everyone that is on this cancer journey with us.

Chemo Round 5/Hospital Stay 6!

Today Cliff will start his fifth round of chemo! It’s exciting to be at the half way done point. Some of you saw that I posted on Facebook that his mass is practically gone! That’s exciting news because we know the chemo is working. His blood and platelet counts are becoming slow to recover, but that’s to be expected the further he gets into treatment. (Remember to donate at Carter Blood Care if you can/willing)

So from the last time he had chemo this is what Cliff has been up too…

·         Losing his eyebrows (Sensitive subject)

·         Throwing the ball with Coy

·         Playing/Crawling with Gabriella

·         Giving me a hard time.

·         Tired (Because of all of that and low blood/platelet counts)

As we were checking in the hospital I noticed how routine/comfortable this is becoming. We walk to the admissions desk and they know us. We walk upstairs and the nurses and techs are lining up to say hi and comment on his weight gain. The dining clerk asked what Cliff wanted for breakfast and remembered that he wouldn’t eat last time.  After we got to Cliff’s room he went next door to talk with a patient that was here last time too. The billing guy came around the corner to say hi and not give us a bill! Lupe with housekeeping cries almost every time she sees Cliff. She says that he will be okay because God told her to touch his toes and she did when he was sleeping one day. They care and inspire us with their stories of themselves or family member’s being cancer survivors. I feel at ease when I’m working knowing that he’s in good hands.

The goal is for him to get discharged on Friday!

Cliff Update!

Once again it’s been a while since I’ve posted, but I’m busy/tired!  

Cliff’s “evil” B treatment wasn’t so evil. The new group of nausea meds the doctor gave him must have done the trick. It was a big relief not to experience what we did with his first B treatment…that was awful!  He will have his 5^th chemo treatment next Monday.  We’ve decided not to have any expectations when we go in for treatments because you never know how his body is going to react.

Overall he has been doing well since his last chemo. The main thing is that he’s tired. Every time he leaves the hospital he has a new chemo symptom. This time it’s a rash on his bald head. He had a platelet transfusion last Friday and he’ll get a blood transfusion tomorrow. After the blood transfusion his energy level will increase. It’s always something so we just go with the flow!

September is Leukemia/Lymphoma awareness month! The Leukemia and Lymphoma Society is a great resource if you want to learn more about blood cancers or if you would like to donate towards research. This is an organization that Cliff and I will heavily be involved with after the New Year.

Click here to Donate Now!

Chemo Round 4

Cliff started his fourth round of chemo yesterday. After this week we will be half way done with chemo! Radiation will happen in late December, but we’ll worry about that when we get there.

So far he is doing fine with chemo…he will get the “bad” bag of chemo in the next hour or so. By tomorrow afternoon I think we will have a good idea on how he is going to react to treatment. The goal is to go home on Friday. He of course has the dreaded hiccups!  Luckily we were able to get his heartburn under control before he started treatment, so I don’t imagine it to be a problem this time.

Life is REALLY busy, so my posts are getting further apart. I’m doing my best to keep everyone in the loop! Look at it this way…if I’m not writing he most likely is doing well!

Thanks for the continued support!

Blood Donation's and Heartburn

Throughout this ordeal Cliff has received a lot of support from family, friends, and co-workers. After I wrote my post about blood and platelet donation we received a lot of support of people saying they would go and do it. Thanks to all of you who have gone to donate blood or platelets. It means a lot to us both.  

Bedford Central BofA Team

Great group of guys!

Poor Sam is afraid of needles, but she did it!

Lea and family!

This week Cliff has had heartburn. I’ve never had heartburn but by his lack of appetite and constant moving it seems like it’s pretty painful. From our understanding this is a side effect of chemo and his body not having enough time to adjust. He’s been taking Prilosec so hopefully he’ll get some relief soon. I want him to feel better and I want some sleep! He also some back pain, he things he pulled a muscle.

Last night Cliff went to a work event with me. He was a great sport about it! I told him many times that if he wasn’t feeling up for it we wouldn’t have to go.  He was determined to go even if we didn’t stay long. His heartburn and back we’re bothering him, but he stuck it out. (I was pretty sure he was going to get sick at one point, but he didn’t) It was nice for us to do something.  I talk about him frequently at work and I think it was nice for others to see him and how he’s doing. The support they’ve offered us both has made this hard thing easier. When I say Cliff needs me, they say go.

Our lives are super busy. Kids, doctors, and work leave little time for me some days. I love all the comments and messages Facebook, but I haven’t found time to write all of you back. Please be patient with me!  

3 down 5 to go

5 more treatments...

We have to do this 5 more times and radiation. The goal is to be done by 12/12/12. After this he will have another one to two years of outpatient therapy. This will be medicine everyday and a once a month chemo shot. This is a form of leukemia so he’ll have to have checkups to make sure it doesn’t return.

Cliff and I talked about what it will be like in December when he's done with treatment. We know it will take some time to get him back to his old self. He will have to go back to work and he'll want to train again. The difference is that he'll want to be home more. He will try and not work every Saturday. He won't train as much as he was before. Sweet Coy knows that his dad is sick. The first week Cliff was in the hospital Coy came to visit and wrote on a get well pillow “Dad I hope nothing happens to you. Love Coy” It still makes me sad when I think about what he wrote. We try and shield as much as we can, but he sees it. Cliff looks different and he can't wrestle with him. To be honest the constant wrestling drove me crazy, but I can't wait to see the day where they are doing it again. Cliff can’t play with Gabriella as much either. He can only hold her for a few short minutes because she’s all over the place. When she gets her shots next month I’ll have to schedule it when he’s in the hospital because he can’t be around the live virus. To tell a father that he can’t hold his kids would be hard for anyone, but especially for Cliff. He’s an amazing/involved dad.

On a different note we got home from the hospital yesterday afternoon. It was nice to be home on a Friday, so we get a couple of days before I go back to work on Monday. Overall, he is feeling okay. His bones hurt so it’s very hard for him to walk or move. This pain typically only last for a day after we get home, so we have hopes that it will be gone tomorrow. His spinal tap went very well! A friend walked in while Dr. Turner was doing the spinal tap and that was a great distraction for Cliff. Dr. Turner typically doesn’t allow that, but because it was for Cliff he made the exception. I’m figuring out that Cliff is making quite the impression with the doctor’s, nurses, housekeeping, and dining staff. You can’t help but create a bond with these people. I know it’s their job to make him comfortable, but I know that Cliff is getting a little special treatment at times. He doesn’t have a headache like last time! Thank goodness! He did get sick a couple of times after his spinal tap though…exorcist style. I joked that they’ll have to paint the walls after he was discharged. He had this acid bubble in his gut so when he would get sick there was no warning sign to grab a bag. I’m getting quite good when this happens though. I grab gloves, wet rag, inform the nurses, and start cleaning up. Its chemo throw up so you have to be careful when handling. The hazmat team has already visited him once.

Once again this post was all over the place, but that’s how my brain works these days. We thank you for the Facebook messages, texts, and prayers.

Kisses before his blood count drops!

Dr. Turner

This was his last dose of chemo Thursday night.

Chemo Round 3...Hospital Stay 4

Cliff has been in the hospital since Monday night for his 3rd round of chemo.

Yesterday they gave him two bags of blood, so hopefully his energy and complexion will improve. He's looking quite pale these days.

He actually was doing very well until 7 tonight. He has had the hiccups off and on like the last two times. Tonight was the first time he got sick. He's been sick a couple of times now so we are hoping the extra medicine will help him. When they started giving him the extra medicine I knew it was time to get comfortable, because I was going to stay here tonight. The nurses are great, but when he's sick like this they encourage having someone stay with him. I'm happy to report that he hasn't had the headache as severe as last time. He still gets it occasionally, but not as intense.

Tomorrow he is scheduled to have his last spinal tap. Fingers crossed that it goes well! Even if he's sick we think Dr. Turner will still try and do the procedure, but we'll find that out in the morning for sure.

Time for a tangent...

It's impossible to get good rest in a hospital! They have to check vitals’ often, blood work at 4am, and they even change the trash at that time. I don't understand why they have to do the trash at 4am. Everything else I get, but not the trash!