Restless Nights

It is Sunday in the early evening. I am writing this post by Kristine's bedside. For the last couple of hours she has been in a cycle of sleeping and waking states. When she's sleeping she's restless. Her arm and hand move about as if she were trying to grab hold of a cup or pet an animal. She blurts out full sentences, dialog from the scene of a dream she is having with a character in her subconscious. When awake she's partly aware and partly confused, generally unsure of her surroundings. She has asked me several times (not remembering that she asked me just twenty minutes earlier) when we got home, even though we haven't left the house all day.

The likely reason for Kristine's condition is a negative reaction to a new pain medication she was prescribed and has been taking for a couple of days. However, the confusion is none-the-less concerning. Kristine has a very small tumor in her brain, for which a sign of possible complication is confusion. Further, her last dose of the medication was yesterday morning, so the effect from the drug should have already run its course. To be extra cautious I paged the oncologist on-call. He felt that the symptoms were not of immediate concern and that Kristine should be evaluated in the morning to be sure that she regains full mental capacity. We'll see how she is mentally in the tomorrow.

Unfortunately, another issue surfaced tonight that may also require attention in the morning (it's no surprise since these things seem to come in pairs). While I was massaging Kristine's neck to calm her down, I noticed that her pulse was not beating in a fluid rhythm. Her heart beat had reverted back to an abnormal pattern due to her cardiac arrhythmia, which is normally managed through medication. If this condition does not correct itself by morning we will have to see our cardiologist first thing tomorrow and likely have to spend the day in the hospital to get another cardioversion procedure done. Regardless of what the morning brings it looks like we maybe in for another long, sleepless night. We'll need some closure before we can breath any easier.

I should back up a little and provide an update on how Kristine has been progressing over the last couple of weeks. We saw our oncologist two weeks ago. We had a few objectives for our visit. First, Kristine has been having an increasingly hard time breathing recently, especially when she exerts herself. The doctor confirmed our concern. On the examination table Kristine's oxygen level was 95%. When she got up and walked just a few steps her pulse oximeter reading dropped to 88%, indicating that she was not getting enough oxygen through her limited lung capacity. Our Oncologist quickly called in an order for oxygen, which was delivered to our house that night. Our second objective was to discuss a clinic trial for a less toxic drug option being conducted out of our cancer center. Unfortunately, Kristine's advanced condition disqualifies her for the study. Finally, we wanted to discuss pain medication. At the time of our visit, Kristine was having stabbing pains in her back caused by tumor growth pressing against a muscle or nerve. He prescribed a long lasting pain med, however, it was this medication that led us to the situation I described above.

We received the results back from Kristine's brain MRI. Our Neurosurgeon was not concerned and did not feel that any immediate action was necessary -- the tumor has progressed very little from the previous scan.

Kristine continues to push on, but the battle is taking its toll on her mentally and physically. The pain in her back has subsided, but has been replaced by pain and discomfort in her right shoulder where several tumors have enlarged and hardened the area. The tightness this has created has made it difficult for her to use her one good arm. Additionally, in the last few days, both of Kristine's arms and hands have swollen to one and a half times their normal size. This is due to a build up of fluid in the lymphatic system known as lymphedema. The lymphatic system is unable to expel fluid from the limbs due to either a blockage of the pathways or a breach of the nodes themselves from tumor growth. The condition does not seem to be painful but is fairly uncomfortable and unnerving. We have an appointment on Tuesday with the Cyberknife radiologist to discuss potential treatment of the area. It is our hope that Kristine can see some relief from this procedure and regain a broader range of motion in her right arm. Without some form of relief Kristine will continue to struggle even more than she already does with daily tasks.

Burned Out

I know it has been a while since our last post and I apologize for not having written sooner. I guess I've been putting it off in hopes of having some good news to share for a change. You have to understand how frustrating it is to keep up this blog with only the rare chance to share positive news.

Kristine and I are both burned out. We're tired, frustrated and worn thin after almost 3 years of this battle. We have been hanging on to the hope and promise of a better day. A day when Kristine can live carefree again; a day without pain; a day where we don't have to worry about cancer and where in Kristine's body it will rear its ugly head next; a day when neither of us breaks into tears struggling to understand WHY this is happening; a day when we can finally just hold one another and feel safe with the idea that there's nothing imminently pulling the other away; a day when we can just live out a normal day. But our hope is being tested. We feel like we're in a dark hole with no clear exit and we're running out of time.

Over the past few weeks, several new tumors have emerged throughout Kristine's body. She now has 18 tumors of various sizes within the perimeter of the hairline on her head. She has a marble sized tumor that is growing just under her left breast with small tentacles reaching out in several directions, another small lump midway down her back just to the left of her spine and still another pea sized lump further down her back. There are three small lumps that we can feel in her abdomen accompanied by swelling and pain in her left abdominal side. Her right shoulder has swollen in size as the cancer continues to compromise the lymph nodes. The veins in her right arm and chest protrude with increased pressure as the swelling and pain limit the use of Kristine's only functional upper limb. Kristine's cough has continued to worsen and she increasingly finds herself short of breath with any moderate physical exertion.

Even scarier than the tumors that we can feel are those that we can't. We know that there are small tumors on Kristine's adrenal glands just above the kidneys, but this is based on observations of her chest scan -- a scan of the abdomen was not conducted. At this point I'm not sure that either of us wants to know. Having knowledge up until this point helped to manage our decisions. Kristine chose to radiate specific tumors before they became an issue. However, without good options to solve the problem, knowledge of additional internal tumors is just cause for greater anxiety.

Mentally, Kristine is quite volatile but increasingly more depressed. She rarely makes it through the day without breaking down in tears. Her mood is mostly affected by the pain she is experiencing. She is taking Vicodin, which seems to calm her but doesn't suppress the pain entirely. Her sedentary state, frustration with a relentless cough and other medications are all contributing factors to a weakened emotional fortitude. To keep herself from slipping into depression she preoccupies her mind with iPhone games and television shows on DVR. She has been withdrawing from conversation with friends lately as well to avoid the questions about her health. The thought of having to discuss the progress of her disease and answer questions about what she is doing next overwhelms her. She enjoys listening to others talk about what's going on in their lives, no matter how mundane, as long as it doesn't turn back into questioning about her.

Kristine is still attending Physical Therapy three days a week. This is a positive source of motivation and energy. We have lost two of our four weekday helping crew, one to reemployment and another to child care issues. One of Kristine's friends has generously stepped up to take on three days, but I'm concerned that this may be too much to ask. The way Kristine is progressing we may need to explore professional help. This, of course, comes with a huge mental stigma attached, with which Kristine will have trouble coming to terms.

We need a renewed sense of hope and change of direction. That's all for now.