Too stressed to post...

So much has happened in the last two years. I don't even know how to begin. Husband Jim is still fighting cancerS, yes plural, cancers. Daughter Kristen suddenly and unexpectedly died November 16, 2015. I hope to elaborate  more in the future on both events. 

Oncologist tomorrow...

We were told six weeks ago that Jim's NSCLC Lung Cancer had returned. Last week Jim had a CT and a PET scan. Tomorrow my husband Jim should receive the results of these two tests. These test results should determine the rate of growth of the new cancer spots. The PET scan should also tell us if the cancer has spread to any other parts of his body. The ROG and location will help determine what options are available to Jim.

I do not know what the news will be. I am nervous, and a bit scared. I am fearful that it will be bad results. I know that there is nothing that I can do but wait and worry. I think that I will feel more comfortable once I hear the outcome, good or bad. After we hear the conclusions, Jim and I can make a plan. No matter the results, the waiting often seems worse. It has been a very long six weeks. At least when I have a plan, I will feel like I am doing something.

PET scan Feb 2014...

My husband Jim had a PET scan today. He was told last month that his NSCLC Lung Cancer had returned. This time the cancer is in his right lung. His left pneumonectomy was February 2013. We will not have the results of this PET scan or CT scan until next week. They will check the rate of growth of the "new" cancer; then they will give Jim his options so that Jim can make a new plan of action. Please keep Jim and my family in your thoughts and your prayers. 

Cancer has returned...

22Jan14: One year ago, on 22Jan13, I announced on FaceBook that Jim had cancer. Exactly one year later, I was on FaceBook once again to let friends and family know that my husband Jim’s cancer had returned.

Jim had a doctor appointment 22Jan13 and we did not receive the news we had hoped for. Jim’s bone scan was good, as expected. The CT scan showed nothing new in the brain, which is great news. The CT scan showed the previous 6mm mass in the lower right lobe is stable, unchanged, which is good because it has not changed. But, the CT scan did show a new 5mm abnormal mass in the middle lobe of the right lung. This is not good news.

The plan is to repeat the CT scan and blood work in six weeks to see the rate of change. There will also be a PET scan in six weeks because the PET will give more detailed information regarding the status of the 5mm mass in the middle lobe, and search for any other new cancers. Jim and I will meet with the oncologist after these tests to review the results and make a plan.

Jim’s attitude and spirits are both good. Of course, we are still processing the information. I’m sure we will have ups and downs. We are thankful for the good news that we received today. We will accept the bad news and deal with it head on as we explore our options. We still move forward with the phrases “it is what it is” and we will “play the cards that are dealt to us”.

We are thankful for our friends and family that has stood with us through this journey. Your love and support are very important to us.

We are thankful for those of you that follow us and give us moral support, your LIKES and words mean the world to us. This journey has been manageable because of the encouragement we have received from you.

Thank you, you know who you are… and we know who you are not. Yes, sadly, we know who who made their choice not there for Jim. 

New year 2014...

Just like many other people, I have set some goals for 2014. One of my goals... more frequent blog posts. I guess time will tell! 

My family is doing well. My husband Jim's NSCLC cancer is currently in "guarded optimism" as we wait to see if the chemo and radiation therapies were successful or not. Jim has more tests in the next few months. 

We will soon be facing more challenges as the new year rolls in. I will expand on those issues on another day. 

I am currently enjoying my canning-food hobby. I am trying new things. Since I am relatively new to canning, most everything I try is new! Ha! I would like to revive my sewing hobby this year. I would also enjoy taking the dog for walks again. 

Still ill...

My husband Jim continues to struggle with symptoms from his cancer, as well as the chemotherapy and radiation treatments that he had. Jim remains extremely tired, nauseous, and weak. The doctor stated last month that Jim's symptoms could continue for a year. We have a long road ahead of us. 

Good news...

22Oct2013 Jim’s appt, short answer: GOOD NEWS! Long answer: My husband Jim had his consultation today regarding his Lung Cancer status. We did not receive any bad news today. Jim’s most recent CT and PET did NOT show any worrisome activity. Jim’s pericardium and pulmonary vein looked good. There is a small area on the right lung that will be closely monitored, but we are not alarmed. The doctor feels, and we agree, that they have done all the chemotherapy and radiation that they can do at this point. The doctor would not say “remission”, we did ask him directly. The doctor did say “guarded optimism”. The doctor stated directly to Jim that he “expects the cancer to come back within two years”. This timeline falls in line with the information that we received at the time of Jim’s pneumonectomy. *Stage 4 NSCLC that has invaded the heart has its own set of parameters. During this phase we will have a “wait and see policy” with Jim having serial CTs and PETs. We are pleased with this update. This news is good news.

This status post comes just nine short months (to the day!) after I announced on my facebook that Jim had cancer. It is just ten short months (to the day!) from Jim’s very first appointment that began this journey. We had no idea at that time that it was cancer. Our lives have certainly changed during 2013. 

Waiting...

My husband, Jim, is still waiting for tests and test results to see if his stage 4 lung cancer is still active. These results will let us know if the cancer treatments were successful or not. Once we have the information, Jim can make a plan and move forward. The weeks of waiting are stressful. Hopefully, we will have information by the end of this month. 

On my feet...

Finally, I am back on my financial feet again. It was a long and difficult summer, financially speaking. My husband Jim only received 50% of his June short-term disability check, due to calendar dates. Then his payments switched from short-term disability to long-term disability. I soon found out that Jim’s short-term paid at the front end of the month, and long-term paid at the end of the month. Jim had no disability check at all for July, or for August. I only work during the school year, so I had no income at all during the summer. I had to manage the entire summer on half of one month’s payment. I went the entire summer on a wing and a prayer, on credit cards, and on the kindness of others. Jim had already emptied his entire savings account and I had nothing left to fall back on. It was scary. It was humbling. It was hard.

It was a difficult time for me, financially speaking. It was also a difficult time for me, emotionally speaking. It was difficult to tell my son that he could not participate in various activities. My daughter did not participate in any extra activities. We were unable to go visit adult children. It was difficult to do activities with my family that required money. It was difficult to ask for help. 

I am now happy to say that this month I am back on track. I was able to meet our financial obligations once again. I had to tell my son that he could not participate in football this year, but sports are a luxury that I cannot justify right now. There is no savings account yet and there are no extra funds, but our obligations/bills are paid. 

I am thankful to friends that have helped us along the way. I have received gifts from gardens, gifts from kitchens, gifts of money, gifts of clothing, gifts of school supplies, gifts of camping, and gifts of time. I will one day to pay it forward. 

No information...

My husband, Jim, has now completed his radiation regime for his stage 4 lung cancer NSCLC. The radiation center gave Jim a cheesy diploma (lol). Jim had already completed his four cycles of chemotherapy. Jim also completed an additional cycle of chemotherapy with a different drug.

Jim had his appointment with his oncologist. We learned… nothing. Yes your read that correctly, we learned nothing. Jim was told to “come back in five weeks” and “we’ll see how you’re doing”.

I think it is time for a second opinion. I do not like the vagueness and allusiveness of this doctor. The doctor tends to practice what I call “defensive doctoring”, meaning the tests, procedures, and health plan are all geared towards a CYA approach of doctoring and do not appear to be geared towards Jim’s unique cancer and unique situation. I was disappointed with the “nothing” report that we received.

Jim has consulted with another doctor to request that Jim’s CTs and PETs are reviewed and explained in full. Jim had asked his own oncologist but the oncologist never complied with Jim's request. As you may recall Jim had a complete left pneumonectomy. My specific concern is that Jim had a nodule in the right lung, and now they are not commenting about that nodule. If it is gone, that is actually a bad thing (not a good thing); because that means that there was actually cancer in the right lung. If the nodule is gone, that means that the chemo has worked to reduce the nodule, but the simple fact that the nodule was there at all means that the cancer has spread to other organs (the right lung). If the nodule is still there, that is actually a good thing because that means it is probably a fungus which is common in our area of the Midwest. 

On a more positive note, I suppose that a neutral "nothing" report is better than a negative report. 

Jim remains extremely nauseated. Jim remains extremely fatigued. Jim is doing his very best to manage his multiple symptoms, but it is a daily challenge. As I have said many times, and will continue to say: Play the cards that are dealt; and it is what it is.

What’s that…

Some days are easy. Some days are hard. Some days are only motions. 

I was sitting outside; just reading. I felt something on my face; I thought it was a fly. I swooshed it away. But, it wasn't a fly. It was a tear. Sometimes the tears fall and I don’t even realize it. 

I never dreamed that this would be my life. It is more difficult now than it was me 25 years ago. When it was me, I could handle it. When it is another, it is sometimes more than I can handle. 

My heart aches all the time. 

6 month goal...

Today is 12Aug2013. My husband Jim is now 6 months post-pneumonectomy! This was a calendar goal for us. Next calendar goal is March 12, 2014. Woot! Jim is having a lot of side effects from the radiation and new chemo, but he is hanging in there. Go Jim! 

I wish I had time today for a longer post about this, but I can't today. Sorry. 

Still struggling...

I am still struggling with keeping up on the blog. Summer has taken a toll on us; financial, physical, time, strength, courage, energy, and I could go on and on. I pledge again to try and do better with the blog. 

Jim's chemo treatment for his lung cancer was not deemed successful. Jim is now utilizing radiation and a new chemo, simultaneously. This new regime is taking a toll on Jim. He is extremely fatigued, weak, tired, low energy; all of those types of terms. 

Jim continues to have a positive attitude and sense of humor. I continue to try and support him and our family. 

The CONSTANT battle with the insurance company has been a huge source of stress and frustration. We have no income for July and August, thanks a lot BCBS and Cigna. We'll make it but it is so stressful sometimes wondering how we'll make it! 

I am thankful for my friends, and for Jim's friends. Their continued love and support means more than they will ever know. I need to give a special shout out to D. D's unwavering support means the world to us.

Thank you...

Thank you. Throughout Jim’s cancer crisis I have been in awe of the kindness and generosity displayed to us. Some people we knew would step forward and assist us in any way they could, and they certainly have. Some people we didn't expect but were pleasantly surprised by their help. Some saw a need and just took care of it. Some pointed us in the right direction. Some have prayed for us, thought of us, provided positive energy and uplifted us. Some people helped with encouraging words (some spoken and some written), some in actions and deeds, some with childcare, some financially, some gave time, some gave meals, some gave gift cards, some gave groceries, some in all categories. Some people have no idea just how much they have helped us. Sometimes it was a huge need that was met. Sometimes it was the littlest thing that was huge to us. Sometimes it was a tiny smile or a fb post of theirs that hit home. Some people knew that they helped us; some have no idea that it meant so much. Some types of assistance were easy to accept; sometimes we had to swallow our pride to say yes. Some of you truly were the mouth or hands of God, if you realize it or not. Some of you helped anonymously… and we never did figure out who you were, so I cannot personally thank you but I hope you know that you are appreciated.  We are so very thankful to each of you. If I haven’t personally thanked you, please know that I meant to and it was an oversight. Some of you may not realize that it was you that touched our hearts. Jim and I (and Matt) had a conversation regarding how it felt to be blessed by others, so that we can remember that feeling, so that we can pay it forward in the future. Several days I have been moved to tears by your words or deeds, and again today is one of those days as I reflect back over the last few months. Sometimes "Thank You" doesn't seem like it's deep enough to say what we feel, but I don't have a better phrase. Thank you, from both Jim and I. <3

On schedule...

My husband Jim's white blood cell count had risen to an acceptable level. Jim was able to pick up his chemo schedule where he left off, at C2d22. This is good news. 

Monday (20May2013) will be the first day if cycle 3, C3d1. Info on chemo cycles can be found in previous posts. 

Worried...

I am requesting prayers and good wishes that Jim’s WBC count will be acceptable and that Jim will resume his chemo schedule without any further delays. Last week Jim’s low white blood cell count forced Jim off of his chemo schedule. Jim was unable to receive his scheduled chemo treatment and instead had to take a series of five shots to try to force his WBC count back up. Today, Jim will return to the cancer center with the goal of his WBC count being at an acceptable level and that he will be able to receive his chemo treatment. Last Monday C2d22 was cancelled, so today should put him back at C2d22 again to resume his previous schedule. 

Edit: Jim's WBC was good. He did receive chemo. It was day C2d22 again, as expected. He is now resumed his chemo schedule. Good news. Thank you for praying and for caring. 

Low white blood cells...

Today (C2d22) Jim was to have another chemo treatment. I say “was” because his treatment was cancelled due to a very low white blood cell count. WBC allow a body to fend off germs. It would put him at risk to have the treatment, and it puts him at risk if he does not have the treatment. It’s a no-win situation.

Jim will now have a series of injections to try and build up his white blood cells. These injections carry a risk as well. Jim must also begin an antibiotic series for a week, again a risk. The goal is to boost Jim’s WBC count so that he can resume his chemotherapy treatments.

This is not the news that I want to report. As I have said before, it is what it is and we will play the cards that are dealt to us. Jim's WBC count needs to rise to an acceptable level. If you are so inclined, please add Jim to your prayer list, send good thoughts, words of encouragement, and so forth. 

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. 

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.