3rd round of consolidation chemo done.

After a 7 week break from my last chemo my counts were finally back up to normal and we could go ahead and do my 3rd round of consolidation chemo. Ideal would have been 4 weeks but the body can only take so much and being in the hospital an additional 13 days was just not worth it with no immune system and actually a big worry in my mind that it would not recover. No one wanted to talk about that scenario.

But, my counts came back up and without hardly any discussion Dr. Brinker and I were in agreement that we would not pursue this round until I was close to normal. In addition to that he decided to make this round and the following round a little easier on my body hopefully.

These consolidation rounds consist of high dose Cytarabine twice a day on days 1, 3 and 5. To make it easier he decided to reduce that dose by 25% in the hopes that my bone marrow will recover faster after it does what they term Nadir out and I need blood and platelets to stay alive and not sucome to the side affects of the chemo.

Also, because they want to push out any white blood cells from the bone marrow when the immune system is compromised they give shots of Neupogen on a daily basis until I am not what is termed Neutropenic. The problem is that this exposes me to others at the infusion clinic that have colds and flues which I can get and of course my immune system can not fight. So, new plan is to try a shot called Neulasta. I am told that this shot is good for 14 days and does what the Neupogen shot does. A few different possible side affects, but it will have me going to the infusion clinic less often.

Unfortunately I still have to have blood work done three times a week M, W, & F but I will of course mask up and keep that time to a minimum in hopes of avoiding picking up anything that would put me in the hospital.

As with everything there is cost and the cost for the Neulasta is expensive and has to be approved by the insurance company. I just can't fathom the amounts that these things cost and the insurance companies agree to pay. Neupogen at $1300 a shot and the Neulasta I am told could be as much at $9000. It is just hard to fathom. I know that it is cheaper than a hospital stay which can run in the range of $30,000 a week or more.

Thank God for insurance. But, I met my deductible  by the 3rd week of January of this year. Which is another struggle to make sure that we don't have to pay more than we should. Which seems to be taking up a lot of my time lately, dealing with Lakeland and the insurance company to get billing and coverage straightened out for hours at a time is not fun and it is still not straightened out.

If it wasn't for all the great people of Coloma, Myers family, friends etc. Who supported us with the benefit I am not sure what we would do. I would still like to personally thank all of those who donated so generously to my family to make this burden easier on us! I can not thank everyone enough... but we will try! If it wasn't for the support of this community I know that our struggle would be much harder and even though there is still stress in dealing with my disease and Karlye's thyroid cancer again I can't say enough how thankful I am for all those that has supported and gave to us, some multiple times and very generously! THANK YOU ALL!

Since my 3rd round of chemo is on board we have to manage my eventual immune system crash and plan for Karlye's next step in her treatment plan. That and I am actually doing work from home with the generosity of my employer. I guess you can say that life still goes on no matter what is thrown at you.

So, update on Karlye is that she will be getting radioactive iodine therapy over spring break. It is a pill that is iodine combined with uranium 131. If I understand the doctor correctly and of course what I research about the treatment myself.

Coordinating the treatment has been a real challenge over the past couple of weeks with me working and going into the hospital myself. There are very specific steps that have to happen so that the radioactive iodine can be administered.

Karlye is currently on a low iodine diet for the next two weeks leading up to the treatment. This is so that when she does take the pill that her body will absorb the iodine into her system. This in conjunction with two shots of a drug called Thyrogen given two consecutive days before she is given the radioactive iodine. The Thyrogen shots and administering the radioactive iodine have to be as close as possible to 24 hours apart from what they tell us. This could have meant three trips to Chicago on three consecutive days or staying in Chicago for those three days to get this accomplished. To try to keep this cost down and not have to either pay for fuel and or lodging we were able to coordinate the Thyrogen shots with Dr. Lai, a local endocrinologist our of Lakeland, who was willing to help support us with this aspect of Karlye's treatment. We also did not want Karlye to miss that much school right before spring break. Trying to keep close to a normal life can be a challenge at times like these.

Dr. Lai has actually offered to do all of this treatment. But, as we have established Dr. Cohen as Karlye's endocrinologist we feel more comfortable with his office in doing that part of her treatment. We feel that he has more experience in dealing with cancer patients that have been through the surgery that Karlye has been through and was highly recommended by Dr. Blair. Although lately dealing with his office and the University of Chicago has presented more challenges than I am liking.

Getting all the information that we need right now for what to prepare for is a real challenge. In doing my research on the diet that she needs to be on and what she/we will have to go through after she is given the radioactive iodine.

Working at a nuclear plant and having some understanding of radiation helps me to understand most of what will happen after she is given the pill. But, it is going to be difficult to coordinate and not a whole lot of fun for Karlye or us in the next six days after she is given the pill. Mainly because she will have to be in isolation and because she will be a source of radiation for 2 to 4 days, still trying to get the specifics on this, we have to keep our distance as well.

Karlye will  have to do things like stay at least 3 feet away from her primary care giver and that person can not be near her for more than 10 minutes an hour each day. Other people need to stay at least 6.5 feet away. She will have to bathe three times a day. The list goes on and on. There is more detail here for those that are interested.  AFTER RECEIVING RADIOACTIVE IODINE.

All I know is that she will be radioactive for the first few days to the point where we will have to have her isolated and separated from the rest of us, including our dog Sugar. The iodine will be secreted through her skin, going to the bathroom etc. She will need many changes of clothes and those clothes will be contaminated with radiation. We will need to treat those and everything else with special precautions. The problem is that I want us to be prepared BEFORE we go and not try to get everything setup after she has already been given the pill. And that is where the frustration lies with dealing with a doctors office that is a long distance away and is also dealing with other departments to coordinate this treatment.

Anyways. I will be getting the rest of the answers I need in the upcoming weeks and we will get Karlye all prepared to her not so fun spring break.

Emily has been doing well. Working and going to school. Unfortunately for her, her car broke down again on her the Monday night I went into the hospital for my lastest round of chemo. The fuel pump went out so she is borrowing Cindy's vehicle while we coordinate how and where to get her car fixed. I can't say enough on how proud I am of her! She is working and going to school. Doing well in both respects and taking care of herself. Making her own way in life and dealing with all these adult issues. And she is paying her own way. With two people in the family having cancer and the bills that have been piling up we try to help her as much as we can by making sure that she gets her car fixed for the best price possible. But, she is the one that takes the responsibility. I am so proud of her!

So, being a resourceful Dad I found her a fuel pump for half the cost of getting one locally, $150 instead of $300 and we have found someone to replace it for a quoted price of $125. That is $85 cheaper than a dealer wanted for the same repair. Now we just have to get her car to the shop and the mechanic will fit it in over the next couple of days. Thanks to the help of Tim Dibble and to the resourcefulness of Cindy and Emily they were there own mechanics and got the car started to get it home to our house without having to incur a tow bill.

Tim remembered that when a fuel pump goes out sometimes you can get it to work again by taking a rubber mallet and banging on the gas tank, it might only work one or two times, but it worked in this case and Emily and Cindy were able to drive it home. Now Cindy and I will need to get it to the shop. We are hoping that it will start one more time and we can just drive it over. If it will not, then I will probably rent a trailer and tow it over myself. Unless I can get someone to tow it for a reasonable price. By that I mean something close to what I can do it for.

Well I think that is it for now. Another busy week coming up and I just wanted to take a little time and update my blog. I hope all is well with everybody who keeps up with our little world and appreciate all the thoughts and prayers that everyone has been sending our way. We are thankful to all of you!

Next round of Chemo.

Hi all!

My counts have been going up all week and are near normal. So, now we get chemo to knock out my immune system again.

Next week I will get chemo. My last weekend of freedom before being in the hospital for 6 days. I guess I better enjoy it!

Congratulations Connor Myers!

Congratulations to Connor Myers on his 3rd place finish at MHSAA Div. 2 state wrestling finals. He did a great job!!

Holding off on next round of chemo for now.

I was scheduled to go into the hospital on Monday, March 3, 2014 for my 3rd round of consolidation chemo. After calling Dr. Brinker and him looking over my blood work for the back 2 1/2 weeks he decided, and I agree, that we will wait until my counts are higher. We will continue blood work and see how things are at the end of next week.

Today I am still neutropenic. Which means that the white blood cells that fight infection are considered to low to do that job. We want this number, also called ANC (Absolute Neutrophil Count), to be above 1.0. Mine has been above that, but today it was 0.8. Since it is fluctuating we are going to wait and hope for some higher numbers by the end of next week.

Last time I was admitted for chemo my bone marrow was fluctuating and we went ahead and did chemo anyways. This has made it so that my bone marrow is taking longer to recover. As Dr. Brinker and I discussed it does no good to knock out my immune system if it takes weeks and weeks to recover and I end up back in the hospital because of it. We need the chemo to reset the bone marrow and for it to recover in a couple of weeks not a month or longer.

So for now this is the best decision for me. It will draw things out a little longer but hoping to be able to do the final round in 4 weeks instead of 7 or 8.

Wishing Connor Myers success at state.

I have been meaning to write about this for a few day now and I am sorry that I have let life get in the way of telling this story.

Last Sunday during a phone conversation with Kris Myers her son Connor wanted to tell me something. So, as we talk he wanted me to know that he had taken it upon himself to call his coach and ask if they could add the symbol for Acute Myeloid Leukemia to his singlet. He explained to me that as a state qualifier he was able to design his uniform and that he asked his coach if it would be possible to add the orange ribbon that represents AML to the thigh of his singlet. To which his coach thought it would be possible. Connor told me that he wanted to add it to support me in my fight against AML. Now that is something that you don't suspect from someone so young and I am grateful for such an act of kindness.

Kris and Courtney Myers you have raised a fine young man! I know that he will do well in the state wrestling tournament this weekend!  Go Connor!!

MHSAA

2014 Individual Finals Home

Connor in his uniform.

Thank you to the Community of Coloma and friends new and old!

I just want to thank everyone that came to the benefit today at North Berrien Fire and Rescue!

We can't thank everyone enough for all your generosity. I was able to be there for a couple of hours but could not stay for the whole time.

I know that I should not be surprised by the generosity of this community. It was so nice to see and talk with so many people. Some that I have not seen in a long time. I know that there were some I did not get a chance to talk to and thank personally and for that I am sorry.

I know that an event like this doesn't happen by itself and I want to thank everyone who was involved for taking the time out of their busy schedules to help with the benefit.

I know that I probably don't know all the people that are responsible for everything so I apologize for not mentioning you by name. But, I know that I wish to thank everyone that attended the breakfast. I also want to thank all the fire fighters that worked hard on the grill and behind the scenes making sure everyone got a delicious breakfast.

I would also like to thank the Meyers family and the Bell family. Both have put so much time and energy into helping make the benefit such a success.

I know that if it wasn't for the generosity of all of you that dealing with my illness and Karlye's would be so much harder. We have been blessed by everyone's generosity and it means a lot being in your thoughts and prayers.

My family thanks you from the bottom or our hearts!

Had a visit with Dr. Brinker today

Well I did get released from the hospital last Friday, February 7th. It has been nice to be home. They sent me home basically on the medications I was on before I went in the hospital. I was told that they didn't think I needed to continue the Neupogen shots and I have been taking it easy. Only really leaving the house to get my lab work done and when I do I wear a mask. I really don't want to end up back in the hospital.

I have been working and doing the things that I normally do like paying bills and taxes. Or at least trying to get my taxes done. I want to have these things done before I go back in the hospital for chemo.

My bone marrow is not responding like it did the last few times I had chemo. It is taking a long time for it to come around. My immune system is still compromised. It is just not producing or rebounding like we had hoped. My counts are staying flat. Just high enough not to need blood products but not rising.

My platelets have stayed at 23 all this week and all the other counts have stayed about the same. This is why I am keeping out of public as much as possible and when I do go in public I wear a mask.

I was worried that Dr. Brinker would want me to go back into the hospital too soon. But, I am relieved to say that we have decided to wait on my next round of chemo to at least March 3, 2014 and if my counts are not up at that time we will wait until they are closer to normal. So, I have two weeks for my bone marrow to hopefully get back to normal.

He also told us that he will be giving me a different shot when I leave the hospital next time that is like the Neupogen shots but last for two weeks. He hopes that by doing this my counts will not stay low as long. He is also considering changing the dosage of chemo he puts me through the next time. But we will see what happens when I go back in the hospital the next time.

Now I just wait for my bone marrow to start producing and try to stay healthy and out of the hospital in the mean time.