Support group...

Jim and I attended our first cancer support group meeting in a town near us, Newton, Kansas. This support group is a branch from the Victory in the Valley organization in Wichita, Ks. The group that we have joined is just starting out. This was their second meeting. It was a small group, but has potential to grow. This is an “open” group, meaning for patients, caregivers, friends, relatives; some groups are closed, patients only. The group discussed potential speakers and inquired as to what the group would like to do. They were friendly and personable. I think we will enjoy this group. We plan to return next month. 

My job...

I have now had my first week of work. I’m an “at-risk aide” at the local school. My job is similar to what used to be called a teacher’s aide. I really enjoy it. I work with small groups, one-on-one, do errands, small projects, make copies, grade tests and so forth… anything to assist the teacher to free up her time so that she can focus on her class. The children that I’m working with are very enjoyable. I really love the teachers, too. My co-workers are very welcoming and friendly. The principal seems to love the job, the school and the kids. I couldn't ask for more. All is well. 

Chemo...

Jim did well, did poorly, did well again. 

Last week after the initial three days of chemo, Jim had a difficult time with nausea. He didn't start vomiting, but he really struggled with the queasiness. Later, Jim felt better again. He was still not at his starting point, but better than the previous few days. We knew the sickness would come, but we still wished that it did not. 

On Monday 25Mar13 (C1d8), Jim had another treatment. Jim felt a tad better than he had on the day before. Jim's current chemo plan is that Jim will have chemo treatments on cycle days 1, 2, 3, 8, 15, 22. 

Jim continues to struggle with chronic extreme fatigue. I have never witnessed this much fatigue in Jim before the cancer. Jim continues to struggle with the symptoms from the chemotherapy. Jim also struggles with thoracic syndrome. 

App for that...

I often hear myself say ‘there’s an app for that!’ So I decided to check and see if there was something I could use on my iPhone relating to my husband Jim’s cancer treatments. And yes, there it was! It is called Chemo Calendar. It tracks various details of the chemo treatments. I do wish it had a place for blood pressure stats, but since it doesn’t I add that information under “notes.” If you are dealing with chemotherapy you may want to check out this app for your phone. Best of all, it is FREE! 

It begins, C1d1...

The chemo begins. My husband, Jim, began his first day of cycle one of his chemotherapy. It is abbreviated as C1d1. Jim had treatments on day1, day2, and day3. Day 1 was nearly seven hours of treatment; day 2 was four hours; day 3 was five hours. Jim did very well on all three days. Jim had a good, positive attitude. Nausea was under control. Jim felt good physically, Jim had energy, and Jim felt strong. Jim continued becoming friends with the nurses, and some of the patients. It was amazing that there were no side effects. We were both very pleasantly surprised by no side effects.

Jim’s “Power Port” worked beautifully. The nurses used a special needle that went through Jim’s skin and into the port. They lightly secured this needle with tape to ensure that he didn't bump the needle. There were no multiple pokes to find a vein. There was no tenderness at the entry sight. Jim could not feel the medicine as it entered his body. They were able to deliver the meds at a slightly faster pace because of the port; which meant less time in “the chair.” I was glad that Jim had the port because we witnessed others in the room that struggled with finding a good vein. Those patients had severe bruising up and down their hands and arms. Jim had no pain, and no bruising.

Jim's chemo session on C1d2. 

The side effects begin. Beginning on day 4, Jim began to feel some side effects of the chemo. Jim became nauseated. His physical stamina was decreased. Jim’s positive attitude took a hit because he (and I) had thought perhaps he would avoid the nausea. Jim is not terribly sick, yet, but I’m sure that is to come. Jim’s weight is maintained. Jim has had no signs of hair loss. Both Jim and I understand that Jim will get worse before he gets better, but the reality of this statement is beginning to hit home. 

Day 30...

After my husband Jim had his pneumonectomy on 12Feb2013 for lung cancer, the doctor told me that Jim would have three major goals; to survive 24 hours, 10 days, and 30 days. Since Jim’s lung cancer had encroached upon his heart and into his superior pulmonary vein, the risks became much higher than the standard pneumonectomy. All of the “normal” pneumonectomy stats had changed for Jim because of the area of encroachment. 

The first 24 hours were some of the most stress filled hours of my life; but he made it. Jim had some setbacks during the first 10 days; but he made it. Jim had some issues on day 23 that put him back into the hospital; but he made it. I was so glad to check day 30 off on the calendar on 14Mar13. I was so grateful that "Day 30" was the best day ever. Luckily, I don’t fear Ides of March.

Before Jim’s surgery Jim had felt so sick and so miserable, all the time. Jim was physically and emotionally drained. After Jim’s surgery Jim was healing and recuperating. Jim had lots of pain issues and of course health issues, so Jim did not feel anywhere near his best. But on March 14, Day 30, Jim had his best day in eons. Jim physically felt better than he had felt in a very long time. Jim felt emotionally better and more relaxed than he had felt in ages. The weather here in Kansas was exceptionally nice on Day 30, 76° with very little wind. Jim was able to be outside. Jim was able to visit with several friends and neighbors. Jim was able to enjoy the sun. Jim had more energy and stamina than he had experienced in so very long. Jim’s mind and body were no longer working against him. It was so nice to witness Jim having such a wonderful day. I will remember Day 30, always.

Friday, March 15 was equally as nice. Again Kansas had beautiful weather, and unusually warm 80° with low winds. Once again Jim relished the great outdoors. Jim and I loved sitting outside and having coffee in the morning. We visited. We listened to the birds. We watched the sun rise. We were at peace with the world. Jim spent the day doing his favorite thing, visiting with several friends and neighbors.

On Friday evening Jim and I went out to dinner with dear friends. We enjoyed visiting and sharing a meal together. Even though the service at the restaurant was not up to par, the conversation and unwinding with friends was great. The four of us topped off the evening with ice cream treats at a local ice cream store.

Those two days were the best days so far. Every day with Jim, both good and bad, are bonus days. I anticipate many more good days. I look forward to the time when I am unable to count the good days because there will be so many. I know that the chemotherapy road ahead will soon be very challenging; but I also know that there will come a time when I will see Jim have a new, even greater, “best day ever”. 

New job...

The job that I applied for recently has come through. There were so many qualified candidates that I was pleasantly surprised that I was selected. After being a stay at home mom for over 15 years, I am now a working mom again. I am proud that Jim and I are meeting our own financial needs.

Right now I am feeling bitter-sweet. I am proud that I was chosen for the job, but I am saddened that I will be returning to the workforce. I am glad that I can provide for the family, but disappointed that it pays so little. I am happy that the job is part time, but wish that the job had some benefits that only come with the full time position. I will no longer be available for our special needs daughter because I am working, but I hope that Jim can take the call if there is an emergency. All my mornings will now be committed, but my afternoons will allow me to be available for Jim’s appointments. 

I know I will love the job… once I get over the guilt.

The Plan...

My husband Jim met with his oncologist. Jim now has a chemotherapy plan in place. The doctor stated that Jim’s treatments will be “harsh and aggressive”. Jim will most likely lose his hair. Jim will most likely display severe symptoms from the chemo sessions.

Jim’s first appointments are Monday, Tuesday and Wednesday. Monday’s appointment will take over 7.5 hours. The nurse said “pack a lunch!” I’m glad the nurses seem humorous. Jim will enjoy that. Jim will have at least four cycles. Each cycle is 28 days, with some days treatment and some days off. It may extend to six cycles, but that will be determined later. Jim will also, most likely, have radiation. The amount and location of the radiation will be determined later.

Jim is feeling like he wants this all behind him. He really isn't scared; perhaps cautious is a better word. He wonders about all the unknowns in the equation. He isn't too upset about the hair loss because it is what it is.

I am ready to get the ball rolling. I am ready for Jim to heal. I am ready to get the cancer out of him so that we can get back to our ‘normal’ selves. I know that the road will be long, and difficult. I know we will face multiple challenges. I know we will have problematic situations. I also know that we will get through this, together. 

We desire your prayers, good wishes and encouraging words. 

Good news...

Today I am writing about some good news. Yesterday, my husband Jim had his power port implanted into his chest. The tubing goes directly into his superior vena cava vein. This will make Jim’s chemo sessions much easier for him. The device is small and completely contained. This titanium power port will stay implanted for many years. In the photo below you can see the small incision where the port was implanted. The upper photo is an Internet image of the device before installation. The lower photo is Jim’s actual chest x-ray just after the procedure. Here is the link for more information about Jim’s Power Port.

Yesterday Jim also had a colonoscopy to rule-out cancer in the colon. The results were good; no cancer was found in the colon. This news made me very happy.

Today Jim and I, along with my Uncle and Aunt, went to visit “Victory in the Valley”, a cancer support organization in Wichita, Kansas. *My Uncle is also dealing with cancer. We were very pleased with what we learned about this organization. VV is privately funded; no funds from United Way! Jim and I plan to utilize one of their support groups.  They also provided Jim and my Uncle with a goody bag of supplies to assist them in dealing with cancer.

I will enjoy learning more about this organization. I read in the brochure that they also have a quilting group. I think I might want to give the quilting group a try. I think I would like to volunteer at VV after Jim is more stable.  If you would like more information about VV, here is their link. You may show support for VV by liking their facebook page.  FYI, the home in the background belongs to Kirstie Alley. 

Waiting room...

I am getting pretty efficient at waiting. Since my husband Jim's lung cancer diagnoses I have spent a lot of time waiting; waiting at doctor appointments, waiting at surgery, waiting at hospitals, waiting for phone calls, waiting on results, waiting for Jim, lots and lots of waiting. I spend lots of time thinking, time praying, time reading, and time sewing.

I am working on a hexagon quilt for Jim. I have been able to work on this project quite a bit recently. I'm glad that I have something to fill the time, but saddened that Jim has so many appointments. The quilt is hand-stitched so it is easy to start and stop at anytime. I think Jim will like it. I hope he will appreciate it.

Today I am waiting yet again. Jim is having his "powerport" implanted today so that he can start his chemo soon. This port is state of the art, titanium, and will be very beneficial during his chemotherapy treatments.

So, once again I will pick up the needle and sew.

Hospital ER visit...

Jim, Thursday 07Mar13

My husband, Jim, has had another temporary setback. We went to see one of Jim’s doctors on Thursday. The doctor was concerned with Jim’s symptoms that day and thought Jim could be having a blood clot issue. The doctor ordered further tests; but the results were inconclusive. They sent Jim home to wait for a phone call regarding an appointment with the surgeon to confirm the questionable results.

Jim, Thursday, 07Mar13

While Jim was waiting at home, his pain greatly intensified to the point that we called the doctor. We were instructed to go to the hospital emergency room. The hospital admitted Jim overnight. Jim began to feel better as Thursday evening went along. 

On Friday morning Jim felt pretty good and we were gearing up for the discharge from the hospital. Then, after lunch on Friday, Jim took a turn for the worse and his pain intensified yet again. After consulting a doctor and Jim’s surgeon, Jim decided to remain in the hospital on Friday night as well. 

At this point I am unsure what Saturday will hold. I hope Jim begins to feel better soon so that he can continue his recovery at home. Jim has two pending appointments on Monday to install his ‘port’, and a colonoscopy. It is very important that Jim be able to complete these two appointments so that he can move forward on his recovery plan without further delay.

Edit: Jim was released on Saturday. Jim is on target for his procedures on Monday. 

Today's dilemma...

Sometimes choices can be so difficult to make. Here is today’s dilemma. Jim suddenly had to have an unscheduled echo cardiogram done in a nearby town… at the very same time as my job interview today. What to do?

This test was important enough that the doctor wanted this test immediately, today and not tomorrow. But it wasn't important enough that they waited three days after a previous test to read the results. The test was important enough that the doctor verbally expressed concern, but not important enough to send him to the emergency room. The test was important enough that the doctor ordered the test “stat”, but not important enough that it was scheduled four hours later at 2:30p.

Meanwhile, I have a scheduled interview in our town today at 3:00p. Yesterday afternoon I had felt confident about this position and this interview. But yesterday evening I found out that there are many more qualified applicants for the same position. Had today’s dilemma happened yesterday I might have called and asked to be rescheduled for this interview, but today I am far less confident and I do not want to send a signal that I will be cancelling things at the last minute. Part of me wants to go to the interview to see if I stand a chance, and part of me wants to just skip the interview since I most likely won’t get this position anyway.

I feel like I need to be with Jim, to show him my support and my love. I feel like I need to be at the interview, so I can take care of my family in the long run. Part of me thinks Jim will be just fine and I can attend the interview with no guilt. Part of me thinks that Jim needs my emotional support for what could be a new crisis and to skip the interview and let the position go to another candidate. I truly believe that my place is with Jim, which is “my job.” I truly believe that my new job is to be the breadwinner so that Jim will not feel pressured to return to work and pay the bills.

I have decided that I will have to go to the interview. This will send a signal to Jim that I believe he will be fine; and to send a signal to Jim that I can take care of the financial things at home so he can focus on healing.  So there you have it. I will drop Jim off at his appointment, drive back to my town for the interview, drive back to pick up Jim, drive back to our home. I hope this works. 

Interview AND thankful…

I haven’t worked since we've had our daughter Kristen. She is special needs and has many medical, behavioral, and mental challenges. I have to be readily available at a moment’s notice to care for her in case of an emergency. But, now that we are facing Jim’s cancer, things are changing. I have a job interview tomorrow. I have not worked outside the home in over 15 years. 

We have had many financial increases lately. The bottom dropped out of our world (emotionally and financially) with Jim’s lung cancer diagnosis. Jim’s last day of work was January 24th, 2013. We are a payday-to-payday type of family…  and now our one income family went to a no-income family. Jim will receive short term disability (soon I hope) at 60% of his gross pay, but no payments have been received by him as of this blog date. We are blessed that we will have 60% of his income, but we will still have 100% of the bills, and right now we have 0%income. We had a small savings account, but that was emptied last week to cover Jim’s medical deductibles to date, and to cover our monthly expenses. We learned very quickly that co-pay’s ($35 per appointment) do not go towards deductibles. Jim has six appointments this week, which comes to $210 in co-pays alone, plus deductible. Another item that I had not budgeted for was additional fuel for the car. Normally I do not travel much but now we have several trips to the doctors and to various appointments. My gasoline fuel budget has tripled. As of today, we are still current on our bills, but now we have no savings account to fall back on, and no income. That can be scary sometimes. So, that is why I am applying for a job.

My classmates surprised me by providing meals for us during and after Jim’s pneumonectomy hospital stay. That saved us so much time, stress, and grocery money. That was such a blessing to us, a need that I did not even realize that I needed.

Please keep in mind that I am not complaining. I’m just writing about the unforeseen financial challenge that we will have to face. We are a proud family and we want to cover our own expenses without going on public assistance. We do not want to ask for help. So that simply means that I need to find a job since Jim cannot work. 

I am applying for a part-time, morning shift job, so that I will still be available to drive Jim to his many appointments. This job will allow me to get the kids off to school, and to be home when they return, while allowing me to transport Jim to his appointments. The job is only minimum wage, but considering the time constraints that I have to work around,minimum wage is something that I will just have to accept. I know that it will be a job that I will love, so that is a blessing. Maybe I should have finished my bachelor’s degree, lol.

I know that there will be many unforeseen challenges along this cancer journey, and this is simply a blog post about one of those challenges. I will have to step out on faith and ‘play the cards that are dealt to us’… because ‘it is what it is’. I think I have those two phrases drilled into my head. Wish me luck! 

Edit: I wrote this blog at 7am. At 2pm we received a wonderful surprise, financial help from my dear friends and classmates! Yea for stepping out on faith! Happy tears and grateful tears were shed. We just need to say a huge thank you for the financial assistance that was given to us at the exact moment that we really needed it. We were blown-away by the kindness and generosity that has been shown to us. We really appreciate it very much, more that you will ever know. I don't know how they pulled it off without me finding out, but they certainly did! 

You all mean so very much to me, and to Jim, and to our family. Thank you.