Imagining the possibilities.

As I go through this last round of chemo I am starting to think about some of the decisions I have made in my life.  Looking to make some changes I think. Or at least think of the possibilities.

Karlye is 17 almost 18 and because of life situations and our illnesses she does not have her drivers license. As a father and parent this has really started bothering me lately. We are actively looking for a vehicle for Karlye. I think she deserves that freedom and responsibility. We have looked at a few. But, still hoping that God will provide something that will be in our price range. Which is not much. I am even willing to work on something to fix it up if needed.

Which would bring us to our other possible pipe dream. Which would be a home where I could work on a car and we could do other things that we would like to do. After living in a single wide trailer in a trailer park for over twenty years I am starting to think it is about time to be able to live with a little less restriction.

I have to admit that the park manager has been really good to us and has helped us and let us use his pole barn for some of our major car repairs. But it is just not the same as having your own garage to do that work. We have out grown our little happy home. We have things in storage that we have not even seen in a couple years. We store our camper in a nice storage lot. But again it is not right there so I can do repairs on it and we can easily get it ready for a trip. Or just use it to camp with the grandkids in the back yard. (No back yard.)

We want to be able to have all our stuff together. To be able to plant a garden or have a bon fire. Things you just can't do in a trailer park.

We have done some major home renovations in the past and I like to build things. I know I have the ability and the tools to do most any home remodel/construction project that we could imagine, and afford. As long as we had some land I could build storage or a workshop on down the line. We could possibly add on if we needed a little more space. As long as the home gave us that possibility to begin with.

I am not sure if God has this in my plans but I am hoping that he does. I just think of all those situations where I would be able to help others. While also being able to help and provide for my family.

3rd day of last round of chemo.

It is the 3rd day of the last round of chemo and so far so good. My counts are actually coming up this week. Just in time for them to be knocked down again! But that is what we want.

Since it has been told to me twice the plan is for me to get out of here Sunday afternoon (Easter). Then Monday blood work and Neulasta shot at Lakeland in St. Joe. Same as before blood work three times a week and blood and platelets when needed. In about 7 to 14 days. If all goes like last time that will be good. 

Dr. Brinker and I talked this morning and he said I can plan on going back to work the beginning of June. As long as everything goes like last round. I will leave the hospital and hopefully a week to ten days later I will nadir out and get blood and platelets and then my bone marrow will start to recover in about a week after that. It will continue to recover to a point where Dr. Brinker feels it is time for a bone marrow biopsy. We will get the results back from that and if all is well, as it should be, I will go to blood work every 6 weeks and office visits every 3 months. That is unless something happens and I am not feeling well and we have a reason for extra blood work etc.

So I am starting to plan on going back to work. Physically I mean. I have been working from home for awhile now. Now I have to get things at the house done before I don't have as much freedom to do things under my schedule. Along with just thinking about being back at work. My JOB for the last 7 months has been my illness. By June I will have been off site for 8 months. That is a long time.

I am sure there is much waiting for me to catch up on. Although working remotely will make that  transition a little easier. I have missed some training and I know I have much to make up. Between NANTEL and Continuing training I could be out in training for a couple weeks easily.

I am so looking forward to feeling better. I am getting a taste of it now even though the chemo is flowing.  My counts are up close to a normal range and I am wanting to do stuff outside in all this nice weather that we are going to have. I am not looking forward to the next crash. But, I am praying it is the last one I will have to deal with.

Now I am starting to think about planning some camping trips and hopefully a nice vacation in July. Not sure where we should go yet. But hoping to figure something out soon. Funny thing is now I am looking at having to put in for vacation time. LOL.

It will be nice not to be getting blood work ever other day and to be able not to have a PIC line sticking out of my arm. Maybe without all the blood test I will feel more like a normal person.

Packing.

I just wanted to let everyone know that I am headed back into the hospital for what is hopefully my LAST round of chemo. Packing and getting ready this morning and will be there by early afternoon. I am hopeful that this will be my last hospital stay in dealing with this illness!

It however will not be the last time that I need to see doctors etc. After this round, like the rest, I will need blood work three times a week. I will also need blood transfusions and platelets. But, I hope that will come and go without any surprises.

I hope all is well with all of you today!

Updates on Karlye and I.

Well, Karlye had her radioactive iodine treatment over spring break. I am sure it was tough for her to be in isolation for 4 days. But, she made it through it. It was just a step in her treatment and it doesn't tell us much. More like a baseline to begin with after the surgery.

When I talked with Dr. Cohen last Monday he gave me the report over the phone. It basically said that there was uptake in the neck. Which means that the radioactive iodine went to thyroid and cancer tissue that was left after the surgery. This is what is expected. The radiation is supposed to kill what is left.

What I didn't expect is that the report also said there was uptake in the upper abdomen. Dr. Cohen explained that there could have been some food in here system that could have caused this on the scan. He did not seem concerned about it but did say we will have to keep an eye on this in future scans.

For now we are still working on getting Karlye's Synthroid dosage correct. This is a long process because we have to wait 6 weeks to make any changes. Our next visit with Dr. Cohen will be in July and he wants to do an ultra sound of the neck at that time.

We have been told that Karlye will have to do the radioactive iodine and scan again in 6 months. I think that is when we will know how successful the surgery and the first radioactive iodine treatment was.

I have been through my 3rd round of consolidation chemo and I seem to have made it through the period where I nadir out after chemo. That is the time when my immune system bottoms out and I can't fight infections. This round I did have to have two blood transfusions with platelets and one day of platelets.

I had an appointment with Dr Brinker on April 4th, the day after Karlye's scan, and we talked about the next and hopefully final round of chemo. The plan is for me to go back in the hospital on Tuesday the 15th for the 4th round of consolidation chemo. Same dosage as the last time and same game plan. Meaning that I will get a Nuelasta shot after this round and hopefully I will recover like I did the last time.

He seems confident that everything will go well and even started discussing the steps after this round of chemo. So the plan is to go through this round, nadir our in seven to 14 days, get blood and platelet transfusions during that time and check my counts 3 times a week. When my blood work shows that my bone marrow has recovered and is back in the normal range we will do a bone marrow biopsy to confirm that the leukemia is not present, you are not considered to be in remission until you have gone five years without a positive bone marrow biopsy. If all goes well that would be the end of May or beginning of June.

After that my blood work will go to every six weeks and I will see Dr. Brinker every 3 months. He also told me if it becomes to much of a hassle for me to see him that I could just follow up with Dr. Patel locally. It was more like once we are done with the bone marrow biopsy he could move on to other patients that need him more than I do.  LOL.

Right now I am not sure if we will be on track with our plan. That is because my counts have been dropping over the past week. Monday's blood work will determine if my next round of chemo is next week. My WBC (white blood cells) have been dropping along with my hemoglobin and ANC (absolute neutrophil count - white blood cells that fight infection). Although my counts are still high enough that I do not need any transfusions. I want to be closer to normal before I go through another round of chemo. So, if they are still low on Monday I will have to talk with Dr. Brinker and we will have to hold off a week or so and see how my bone marrow recovers.

Good news will be that when I go through my last round of chemo and get through the nadir out period and my bone marrow recovers. I can go back to work. Something that seemed like a pipe dream for so long now. I so want to feel better. That has been one of the toughest parts of this illness, besides the chemo, ICU etc., not having the energy to do things. Or having low platelets and knowing that I need to take it easy and should not do much. I learned several times that my body will pay for it if I don't take it easy.

It will be nice to have the energy to exercise and do things that I would like to do. But, for now I am looking forward and thinking about the things that I need to take care of during this recovery time. Things that will be tougher to do once I am back to work and a somewhat normal life.

Well that is the update. I know that I have not posted in awhile but it is surprising how long it takes for blood work and then dealing with all the medical bills. I am still trying to get things straightened out with Lakeland. I will try to keep this updated a little better in the future. I hope all is well with everyone that does follow my blog and that you all are enjoying this burst of spring weather!

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!!