April updates about Jim...

photo google images

Jim had a busy week. Monday, 22Apr13 C2d8, Jim had his scheduled chemo treatment. His white blood cell count was just enough that he was able to receive a full dose of the medicine. This was good news because I want the cancer gone!

Also that week Jim had an echocardiogram on his heart. This was a follow up to the echo that he'd had last month. The doctors are looking to see if everything is still the same. The results were as expected.

And that week Jim had a CT scan. This CT scan will establish a post-surgery benchmark to measure the cancer movement as the chemo progresses. The results have not yet been discussed with us in detail, but nothing alarming was in the report.

On Monday, 29Apr13 C2d15, Jim had his scheduled chemo appointment. Jim’s white blood cell count was again very low. Jim was not able to receive the full dose of chemo but Jim was able to receive a half-dose.

Jim is still very nauseous. Jim is still very fatigued. Jim is still very weak. All of this was to be expected from the cancer and from the chemo treatments. 

50th Birthday...

I guess ignoring my birthday this year was just not going to happen. I went with the theory ‘if you can't beat them, join them’. My birthday started off very nicely. My husband, Jim, baked me a chocolate cake. Jim and the kids iced and decorated the cake, too.

Since it was my birthday I took mini-cupcakes to work for the 60+ kids in grade two that I work with. I thought this would be the end of my birthday at school. I was wrong! I was so surprised to find out that the three grade 2 teachers had baked me a cake to share with all the school employees. They had put up posters on their classroom doors announcing my birthday. These same three teachers took time out of their busy day to sing Happy Birthday to me. They also gave me a lovely gift. They wore black in my honor. They had a coworker create a big 50 hat for me to wear all day. The kids all loved the 50-hat that I was “required” to wear all day. As I entered each classroom, the children stopped working and sang happy birthday to me. I was so touched by the joy that was shared with me. Second graders love birthdays, so when they told me happy birthday I could see that they really meant it with the all their hearts. Many of the kids were amazed at the age 50, which made me laugh inside. They had a hard time grasping the concept of 50 birthdays, since they have only had eight so far.

My son and daughter-in-law sent a lovely bouquet of flowers. My daughter called me first thing this morning. She had already sent me a cute weekend bag that she had created herself. My step-daughter sent me a cute video of the triplets telling me happy birthday from all of them. We topped off the day by going out to dinner with friends.

Being 50 isn't so bad.

No garden...

This year I had wanted to put in a small garden with some basic vegetables like tomatoes, green/yellow/red peppers, green beans, and some herbs. I have recently enjoyed canning foods and dehydrating foods and I had looked forward to an abundance of these vegetables. I had considered a few basic flowers as well like pansy and marigolds. But in the end, I decided to put in no garden at all. 

I decided that I would not have the time or energy to properly care for a garden. It bothers me to have a weed-patch because I don’t take the time to weed it. It bothers me to have produce go to waste because I don't have the time to pick it. It bothers me to see my garden wilt away in the Kansas heat because I don't have the energy to water it. I would be saddened to look at the garden every day. I would feel very guilty for not giving the garden the time and effort that it needed. Instead of a vegetable garden bringing me joy, it would bring me heartache. So I have decided there will be no garden for me this year.

Both my time and my energy will be very limited this summer.  With Jim’s cancer and cancer treatment side effects, and my children’s summer schedules, and I may have to find a summer job, I felt that a garden this year would be too much for me. I decided that I would plant nothing this year and take gardening, watering, and weeding, completely off of my plate.

There have been several things that I have had to remove completely off my plate; and now I will add gardening to that list. There will be a few more things that I will have to make a decision about in the very near future. I just feel that in order for me to maintain some form of sanity, I have had to make some personal decisions about what things will be given my time and my energy. Sure, I'm a bit down about this but on the other hand I am pleased that I am able to make the choices that will help me to deal with my present situation. The more items that I can take off my plate, the more focused my time and energy will be. 

Oncology update...

Today my husband Jim had a scheduled appointment with his oncologist for Jim's lung cancer. The doctor has decided to postpone Jim’s radiation treatments until after cycle 4 of Jim’s chemotherapy treatments, instead of after cycle 2 as originally planned. Jim is currently in cycle 2. Jim is too nauseous and too fatigued to do the radiation treatments and the chemo treatments simultaneously (after cycle 2) as we had hoped. Doing these two treatments simultaneously would increase the side effects of both the chemo and radiation, which would be very difficult to manage. So, the new plan is to evaluate a course of radiation treatments after Jim’s fourth cycle of chemotherapy.

from google images

On Monday 22Apr2013 Jim will have a repeat echocardiogram as a follow up to the one he had in Mar2013. Jim will also have a CT scan done as soon as possible to pinpoint the degree of margin that the cancer had spread. As previously stated here, Jim’s cancer is in the pericardium (sac) surrounding the heart, as well as the left superior pulmonary vein. The CT scan should display the cancer and give the doctors a new baseline to measure the results of the chemotherapy.

A PET scan is more detailed than a CT scan, but Jim cannot have another PET scan for a few more months because of his pneumonectomy. The pneumonectomy surgery that Jim had in February will cause false positive and negative results, so it is better to wait until complete healing has occurred so that true results can be seen and measured.

Jim’s fatigue is increasing daily now. Jim’s nausea is also increasing daily. As of right now, Jim is able to manage these symptoms; but management will become more and more difficult as time goes on. We will simply deal with each day as it comes.

Jim continues to have a good attitude. Jim continues to display his humor. Jim is dealing with his cancer in a positive light. Jim is courageous and faces the daily challenges. I try to do the same, but sometimes I am not as successful as Jim.

Our two kids at home are doing well. Our special needs daughter does not understand she simply knows that dad is sick. Our 11 year old is handling it well. He has stepped up and taken on more responsibility at home, as well as more babysitting of his older sister. Three of the four adult children have been very supportive and we appreciate their words, calls and kind gestures.

Our specific requests today are: that Jim’s white blood cells will fall within the acceptable range; that Jim’s side effects will continue to be manageable; and that there are no surprises on the CT scan or echocardiogram.

Catching up...

It has been unseasonably chilly here in Kansas this mid-April 2013. I am ready for spring to arrive with some new flowers, green grass, and new leaves on the trees. I am ready for a fresh start and a fresh outlook.

from google images

My husband Jim had his first three days of treatment in this second cycle of chemotherapy for his lung cancer. Jim’s white blood cells continue to be an issue. Jim is very queasy, even while taking his two anti-nausea medicines. Jim is very tired. He takes several naps to try and deal with the fatigue. Jim continues to have a good attitude and good spirits because it is what it is.

My new job is going well. I really enjoy working with children again. I love the cooperative spirit at the school with everyone on the same team and no drama. It makes going to work more like a hobby than a job because it is such an enjoyable experience. I love the “light bulb” moment when a child understands the new task. I have been there to witness their joy and pride at mastering a new skill.

My family will continue to play the cards that are dealt to us as we move forward in this journey. 

Cycle Two, C2d1...

Today is C2d1, Cycle two day one. Jim will have 4-6 cycles of chemotherapy for his lung cancer. Each cycle is 28 days. 

Jim’s white blood cell count is still low, but he was able to receive a full dose of both chemo medicines today. This full dose treatment was a blessing because at the previous two treatments Jim was only able to receive half dose. Jim will have two more treatments this week, then one per week for three weeks. I am very pleased that Jim was able to maintain his treatment schedule.

Today Jim is feeling pretty queasy. He has already had to take one nap today after he arrived back home from his chemo treatment. The nausea and the fatigue are very real issues. Jim has trouble with day-to-day events due to the fatigue and nausea. Jim has not yet lost his hair. I am surprised that Jim still has his hair because the doctor had stated that hair loss was to be expected. Perhaps that is yet to come.

At the end of this second cycle, the doctors should reevaluate Jim to assess his radiation plan. They plan to have Jim do simultaneous treatments. This may be difficult. We will have to wait and see.

I will be glad when the doctors will be able to tell us that Jim’s cancer is in remission… that will be a glorious day, and I am looking forward to it. 

Another month...

Image from Google Images

As any family dealing with a medical crisis, our family is doing our best to meet our financial needs and financial obligations. I am happy to say that we have successfully made it through another month. For us, this is worth sharing because it has been a challenge at times.

In February we completely drained our savings account to pay medical bills. In March we received financial help from friends and we used the gift to pay down more medical bills. This month we received our income tax refund and again used it to pay down medical our obligations.

About three years ago, and before Jim’s cancer crisis, I had put our family on a “financial diet” to try to pay off all of our debts because I dislike paying interest. That plan has been indefinitely put on hold. No extra payments are being made on any of our debts; instead we are focusing on our minimum payments so that we can try and pay all of our medical bills. I am doing whatever it takes to keep Jim’s treatments going and to stay even with all of our obligations. 

My job pays near minimum wage, but it is steady income and more importantly I truly love the job. Jim is receiving another month of short-term disability at 60% of his previous gross, but we have 100% of the bills in addition to the added medical expenses and all that goes along with that. Jim has to re-qualify for short term disability every 30 days, so we never know from month to month if we'll have enough money or not. Jim will not be able to return to work for quite some time. We have to step out on faith and pray that the disability is approved each month; as well as make up the 40% shortfall. That is so very stressful to us both. 

Our biggest budget adjustments have been: gasoline, groceries, and co-pays. Gasoline to get to all of the various appointments that Jim must attend. Pre-cancer we hardly drove the car anywhere at all but now we are attending many medical appointments per week. Groceries so that Jim can eat healthier. We have always eaten a balanced diet but now we must greatly increase the fresh vegetables and fruits to help Jim's body fight the cancer. Co-pays are $35 for every single appointment, chemo treatment, consultation, lab work, x-rays, etc. I quickly learned that co-pays and deductibles are not the same. Our co-pays are in addition to our deductible (20% of the bill); and in addition to the over-the-counter meds and vitamins that are not covered at all. 

Please keep in mind that I'm not complaining, just stating that ‘it is what it is’ and financial issues are part of the picture. We are happy that we are still maintaining this month. We are proud of the fact that we have met this challenge again this month. 

Visitor...

*This entry is not in chronological order.* 

Last week (April 1-4, 2013) we were blessed to have my husband Jim’s daughter Jessica visit us. Unfortunately, her two year old triplets could not visit because of Jim’s weakened immune system. Our son-in-law stayed home to care for the children. Jessica’s dear friend also assisted in childcare. I am thankful that they could work it out so that Jessica could come and visit.

Jessica was able to stay a few days. We really enjoyed having her here. Jim especially had a good time visiting and catching up with Jessica. Jessica has been a wonderful support for Jim, and for me. She is kind, loving, wise, and a friend. It has been a joy to watch her mature into a wife, loving mother, skilled nurse, and true friend to many. 

I wish we could get together more often. Iowa is close, but sometimes it seems very far away from Kansas. As soon as Jim is in remission from his lung cancer, we plan to visit Iowa more often. 

My life...

I am going through some personal struggles right now. My emotional health is besieged. I am overwhelmed. I am very sad, and very depressed. I am hurting.  I need clarity and focus. 

White blood cells...

For the last two chemo sessions in a row, my husband Jim’s white blood cell count has been low. Those two sessions (C1d15, C1d22) Jim only received a half dose of his chemo. This is a concern for us on two levels. First, his WBC count is very low and his immune system is very weak putting him at risk for infections that he cannot fight. Second, his chemo plan may fall behind on his schedule which could delay the radiation evaluations, putting him at risk for cancer spread. 

On an up note, Jim’s red cell count was within range. Jim has been able to manage his nausea. Jim is tired but seems to be managing his fatigue with frequent naps and resting times. 

Please pray for Jim’s WBC count to rise to an acceptable range. Please pray that Jim will not be exposed to any negative germs.