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!