For those of you that have followed my blogs, you know that I attempt to find a common thread between a "real life" experience and career searches. It has been a few weeks since my last post because "real life" has taken a very uncomfortable grasp on me and my family lately and I wasn't sure I wanted to share the experience yet. I also wasn't sure I could find that common thread. Given recent events, I thought it was time to share, and I hope the thread is relevant and beneficial.
It is amazing and overwhelming to me how life can change in the blink of an eye. For those of you that read my last post, I mentioned that we had had a medical scare. Well, the scare has turned into a horrible reality. By no means am I looking for sympathy by writing this post, nor am I minimizing anyone else's "real life". One thing I have come to realize over the last few weeks is that reality and tragedy are all relative. When it happens to someone you know, you can sympathize and even empathize, but when it happens to someone you love, the reality is very different. Here's the sequence of events:
On August 30th, my husband went to the doctor to have a lump checked out. Little did I know that he had this lump for more than 9 months before saying anything. The doctor immediately scheduled him for a CT scan. The CT scan showed 3 enlarged lymph nodes, but they weren't sure if they were enlarged due to infection or something more. The next step was for my husband to have a biopsy. This was scheduled within a few days. We were so relieved when the result came back negative, which is when I posted my last blog. I thought we had dodged a bullet. Little did I know that a negative biopsy doesn't mean you don't have cancer. All it means is that the tissue sample that was retrieved didn't show signs of cancer. Did they pull tissue from the right area? Did they penetrate the lymph node and pull tissue from the other side that didn't have cancer cells? I guess we'll never know why, but the next steps have been overwhelming and terrifying and life changing.
After the biopsy came back negative, our primary care doctor referred us to a hematologist. Again, in our ignorance, we didn't know this was an oncologist. She informed us that a negative biopsy didn't mean he didn't have cancer. She said all of the markers point to lymphoma, so they were "going to keep barking up that tree" until they ruled out lymphoma. This meant additional CT scans, surgery to remove the lymph node that was enlarged, bone marrow extractions, and many, many blood tests. After a couple of weeks of non-stop tests, the initial radiologist's report came back with a diagnosis of follicular lymphoma. With the diagnosis, we then needed to go through the grading and staging process to determine the treatment. Again, in our ignorance, we thought that a treatment plan would be defined and wouldn't change. All of this took us through the month of September into the early days of October.
During this time, we tried to keep things from our 6 year old daughter. Until we had a firm diagnosis, we didn't want to scare her with possibilities. Little did we know that her intuition would lead her to the diagnosis without us saying a word. She went to her Nana's house one afternoon, after my husband had had the surgery and the bone marrow extraction, and casually made the statement "I hope my daddy doesn't have cancer". After this, I knew it was time to sit with her and explain everything to her in the best 6 year old terms I could find. The treatment plan, at this point, was 8 - 12 weeks of radiation with a prognosis of a "cure". The doctor was very specific that they almost never use the word "cure" but felt they had caught the cancer early enough that they could in this case. Given this information, I felt I could be as upbeat as possible with my explanation to my daughter. We had an appointment the following Monday with the doctor to finalize and schedule the treatment, so I thought it would be a great idea to bring our daughter to the appointment and hear some supporting statements from our doctor. Oh, the decisions we make!
On October 18th, once again, our lives were turned upside down, and our daughter was in the room to witness it. The full pathologist report was in, which staged him at a stage 2, grade 3 follicular lymphoma. The grade 3 made the cancer more aggressive than originally thought, which changed treatment to chemotherapy followed by radiation. I felt like someone punched me in the stomach. I was watching the look on my husband's face, watching the fear cross my daughter's face, followed by confusion on her face. I'm trying to process this new information, meanwhile terrified about the damage I have caused with my daughter. Did she think I lied to her? Did she understand what was being said? How was my amazingly wonderful husband handling the change of information? If only this were the final verdict.
The next steps were again a whirlwind. We were scheduled for a MUGA scan to be sure his heart could handle the treatment. Initially, he was supposed to get a catheter to administer the chemotherapy, but at the last minute, she decided that he would go through three cycles of chemotherapy, three weeks apart, which he could do through a normal IV. We had a teaching appointment to learn about the side affects and the sequence of medications to take at home, as well as the "warning signs" to watch for home. Chemotherapy started on the 25th, and are administered in three consecutive days, with the last day being a shot to encourage the bone marrow to produce white blood cells. After the chemotherapy started, she scheduled a PET scan, which we had on the 27th. We had our follow up visit to check his blood count and get the PET scan results today. Once again, our world was turned upside down.
Apparently, his cancer his spread some more. He has more lymph nodes in the original site that are affected. There are lymph nodes surrounding his pancreas that they think may be affected, as well. He has some inflammation in his lungs that they don't think are related to his lymphoma, but residual from the pneumonia he had earlier this year. We aren't sure yet, but the treatment may change again. For now, we continue with the chemotherapy as scheduled. Two weeks after his 3rd cycle, he will have another PET scan and CT scans to see if the lungs and the lymph nodes have changed. If they have changed, then they will attribute the changes to the chemotherapy and assume they are related to the original diagnosis. Then, we'll go through another 3 cycles of chemotherapy. If they haven't changed, the doctor said "we'll scratch our heads and try to figure it out". We didn't discuss prognosis today, so I'm not sure if it has changed or not. We'll bring it up at our pre-chemotherapy appointment next Friday.
So there is the clinical information. Now for the personal information. My husband isn't tolerating the treatment very well. He aches all over. He is beyond tired. He sleeps for probably 18 hours a day. He has lost the feeling in his finger tips, which we hope is only temporary, but were informed that it could end up being a permanent result. His spirits are pretty good, and he is determined to fight this, which makes me thankful every minute of every day. He isn't able to digest food very well, which causes concern for abdominal infection. The "cocktail" he is on has caused him to gain weight, which makes him very uncomfortable when trying to get dressed. His muscles are weak in his legs which are giving him problems walking.
Me? It breaks my heart to see my husband, the light and love of my life, weakened by this poison that is hopefully going to cure him. I am terrified, for me and for my children. I am angry. I feel guilty. I am incredibly sad. This treatment will end our "baby making days" forever. I want to take every ounce of pain away from him and make him well, but all I can do is take care of him by making sure he takes his medicine and makes his appointments. I feel like the weight of this disease rests on my shoulders. I have to monitor every person that comes to my door to make sure they don't have a sniffle, as his immune system is compromised. I try to keep the kids in another part of the house so he can sleep without interruption. But the constant, no break with the kids is exhausting. That is when I get angry because I want him to help me with them. Guilt follows quickly because I know he can't help me, not that he doesn't want to help me. How can I be angry at him because he is fighting the fight of his life? The roller coaster of emotions is frightening. I have my moments of tears, but I have to wait until everyone is asleep so I don't frighten them, too. I pray that God is going to cure my husband and that this road we are traveling right now is a wake up call to put our priorities back in order. I am so thankful for the wonderful doctors, who have overwhelmed us both with non-stop appointments, but are committed to treating him as aggressively as they can. I am eternally grateful to our friends and family that have shown such tremendous love and support, and continue to pray for our family. Not only do I pray for a positive result for my husband, but I also pray for the strength, courage, and wisdom to be the best wife and mother I can be.
So, can there be a common thread between this scenario and searching for employment? In my humble opinion, yes. Persistence. Commitment. Follow through. Having a support system that will hold your hand or kick your butt, depending on what you need on that day. Believing that tomorrow is going to be a better day and not focusing on the negatives of today. There is always a lesson that can be taken and applied, if we choose to look at each scenario through the eyes of optimism and learning. Lastly, faith and belief that God is working with you, for you, and through you provides a tremendous amount of peace.
Kim Cyr, Director of CSP Groups, can be reached at 888-831-9495, kcyr@cspgroups.com or www.cspgroups.com.
