Overwhelmed

Kristine has been in a lot of pain the last couple of weeks stemming primarily from the muscles in her upper back. On the right side, her muscles frequently launch into spasm lasting anywhere from one to ten minutes. It isn't clear exactly what's causing the spasms, but they are likely the result of either overcompensation for her paralyzed left side or interference of the muscles by tumor masses in her lymph nodes. On her left side, the muscles in her back that hold the shoulder blade in place have started to weaken due to inactivity. Kristine was kept away from physical therapy for several weeks while she received radiation to lymph node tumors in her right shoulder and neck. With no strength in the musculature to hold them in place, her left arm and shoulder have rolled forward pulling on the back muscles and inducing extreme discomfort. Kristine tried taking a muscle relaxer to relieve the pain. The trouble was, while it ameliorated the spasms on her right side, the medication did little to relieve the tension on the left. More concerning was that the prescribed pharma interfered with Kristine's breathing, leaving her already compromised lungs gasping for air. The situation has left Kristine in a Catch 22 -- the pain makes it difficult for Kristine to work on strengthening the muscles, but only strengthening can resolve the pain.

Several doctors' appointments are on the agenda for this week and Kristine's mom will be on hand in Philadelphia to help. Kristine is scheduled to see our primary care physician to get some options to manage her muscle pain. She will also get his recommendation for a good physiatrist since ours has turned out to be somewhat of a deadbeat -- not returning a single request for call back.

Also this week, Kristine will get her regular check up scans. She will have CT scans taken of her chest, shoulder and neck and an MRI of her brain to evaluate and measure the progress of her disease. The anticipation leading up to and the frustration that often follows the scan results is emotionally taxing. The reports rarely bring positive news and are never accompanied by solutions to fix the underlying problem. Our expectations for this round of scans are low though as we see clear signs of disease progression. The first is a serious of tumors on the surface of Kristine's head within the perimeter of her hairline. Although only two have reached a large size -- about that of a grape -- several more have continued to enlarge and still others have developed anew. Another visible sign that has reared its ugly head in just the last week is a small lump that has formed at the lower crease below Kristine's left breast. The signs are especially troubling as they represent what is likely just the tip of the proverbial iceberg, leaving us anxiously wondering what might lie beneath the surface.

We have both conceded that the herbs Kristine has been taking over the last several months are not working to reverse the progress of her disease. She is still taking the supplements and herbs until we move on to our next option in the case that they are having a slowing effect on the advancement of her cancer. We both remember the condition she was in prior to beginning the herbal treatment and hate to have her fall back into that state. There is another natural option that Kristine will begin taking after her scans are complete. It has the most evidence from conventional research of anticancer success than anything else we have tried to date. I'll talk more about that in later posts once we've had a chance to evaluate its impact.

Overall Kristine is feeling frustrated, dejected and overwhelmed by her situation. She feels like the progress she has made physically to improve her mobility over the last several months is quickly being reversed. Mostly she is just exhausted from being in pain. Her emotional breakdowns come more frequently these days. Kristine tries to compose herself during the day with her friends and helpers until she can release her emotions with me at the end of the day, but even this has become difficult.

We are still holding on to hope even if it is by a string. Hope that an answer, a solution, is around the corner.

Birthday Visitors

The last couple of weeks have been good, at least as weeks go for us. Kristine started another 5 day Cyberknife radiation cycle last week to shrink another tumor in a lymph node on her neck. This one is much smaller than the one on her shoulder, but was causing discomfort nonetheless. The treatment seems to have already relieve some of the pain.

She's also started another type of radiation to tackle a small subcutaneous tumor on the back of her head. There are about eight tumors that have formed just under the skin on her head. Most of them are very small, but one has reached the size of a garlic clove and causes pain when she sleeps due to its location. This new treatment emits radiation to only a very targeted area limiting its impact on healthy cells. Kristine will only receive this treatment for 5 days.

Last Friday was Kristine's birthday and the two year anniversary of her heart surgery. Her three sisters came into visit and celebrate over the weekend. Things stayed pretty relaxed, but we did manage to get out to dinner each night they were here. Kristine's cousin Cris is also in town at the end of this week. So, as always, we have the visitors rolling into Philly.

New Discovery

This has been an event filled week. I hoped not to have any more to talk about after the last few posts this last week, but unfortunately there's more to tell. After getting out of the hospital on Wednesday afternoon, Kristine decided that she needed a little adventure. So we hopped in the car and headed to the King of Prussia Mall. This is truly one of the unique qualities about Kristine. She can have a heart procedure done one day and be ready for shopping the next. Her heart rhythm has been fine since the cardioversion procedure (and the trip to the mall).

On Friday, I had my own doctors appointment in the morning, which thankfully did nothing more than to confirm my good health. I worked from home in the afternoon jumping on several conference calls. My last call of the day was just about ending when Kristine yelled my name from the next room. I ran in to see her clenching her left arm as she told me she was starting to have another seizure. I abruptly hung up the phone and ran to her side. The seizure seemed to last a bit longer than previous episodes. Fortunately, there were no lasting side effects and Kristine quickly regained her muscle control.

That evening we sat outside to get some fresh air and relax after the earlier event. Kristine was rubbing her back when she felt a hard lump on the lower right side. This new discovery, which we surmise to be a likely tumor growth potentially in or near her kidney, is very concerning. The finding sent Kristine into a depressed state the rest of the weekend. She's had trouble staying positive the last few days and started to lose a bit of hope. I'm sure she will bounce back. She just needs some time to regain her energy and strength again after a tough week.

This upcoming week we will be talking to our oncologist and the CyberKnife center to discuss some next steps. Here's hoping for a good, uneventful week ahead.

Without Missing a Beat

Kristine's day at the hospital went off without a hitch. She was a little groggy at first but bounced back to herself in no time. The procedure was successful. Her heart is beating in a steady, normal sinus rhythm at about 70-80 bpm. She is spending the night in the hospital for monitoring, but everything looks good so far.

Shocking

As promised here is an update on Kristine, the second this week.

We were able to get into see the cardiologist on Monday to discuss Kristine's irregular heart rate. Our regular doctor is away on vacation this week, so we saw another cardiologist, Dr. Wong. After reading Kristine's history and the print out of the ECG, she jumped right into describing the problem and the game plan to correct it.

Kristine has a cardiac arrhythmia (abnormal heart rhythm) called atrial fibrillation. As an effect of the extensive scar tissue left from her earlier heart surgery, the electrical paths that travel around the heart and make it beat in a proper rhythm have been interrupted. This results in the top chambers of the heart (atria) beating too fast and quivering, leaving them out of sync with the bottom chambers (ventricles). This is cause for concern because blood can pool in the heart increasing the potential for blood clots to form. Atrial fibrillation presents several risks. The pooled blood in the heart can form clots that can travel to the brain and clog arteries, which in turn can cause a stroke. Additionally, the increased heart rate can weaken the heart's muscle and cause heart failure.

There are a few options to correct the condition. For otherwise healthy individuals, surgical or catheter-based options are often used. For Kristine, a less invasive method will be explored. Her condition will be treated with synchronized electrical cardioversion. This is basically a shock to the heart to reset the electrically impulses to a normal rhythm. Additionally, Kristine will be treated with medication to help regulate the heart rate.

Kristine was admitted to the hospital today (Tuesday). The procedure is fairly routine lasting only about an hour. Kristine will be under anesthesia for just a short time while they apply the treatment. Typically this would be handled as a day patient procedure, however, our doctors want Kristine to stay overnight for monitoring to ensure that she tolerates the medication and that her heart rate is functioning normally.

I am in the waiting room as I type. Kristine's name is still not on the status board, so it may be some time before she is done. I will post another update this afternoon to let you all know how she fared.

Beats per Minute

Kristine finished the last of her five Cyberknife treatments on Friday. We will not know for sure if the radiation worked to shrink the tumor for a couple of weeks. It does look as if the tumor is flatter than before and the Radiation Oncologist said that it felt soft to the touch. These are good signs, however, the area is still pretty swollen so only time will tell.

Toward the end of the week (Thursday and Friday) Kristine started complaining of a sharp pain in the right side of her head and another in her left thigh. Both sharp, stabbing and acute pains that seemed to start simultaneously. Additionally, her heart rate began to beat rapidly. On Friday, when they took her vitals at the Cyberknife clinic her resting heart rate was 160 beats per minute. To put that in perspective my resting heart rate is 60 bpm. The doctor expressed his concern and advised that she go to the ER as a precaution. He explained that the radiation was not the likely cause of any of the symptoms she was having and that they could be indicators of something more serious. Kristine debated going to the emergency room Friday evening. In the end, she refused and decided to wait and watch her symptoms despite the push from me and her parents to take the more conservative path.

Kristine's parents went back home to Michigan on Saturday, leaving Kristine and I to ourselves for the first time in a few weeks. It is always fun and helpful to have them here, but we also enjoy are private time together. By Sunday, Kristine's head and leg pain had vanished leaving us to question the coincidence in timing of the pain and the radiation. Her rapid heart beat had also slowed to a resting rate that fluctuated between high and normal (100-60bpm). Kristine finally did agree to see our cardiologist as soon as possible on Monday. She dreads what's in store -- EKG, Echo cardiogram, Holter monitor and potentially a hospital stay -- but acknowledges the need to take the precaution.

Provided everything goes well tomorrow I'll post as usual next week. If, however, there is news to share I'll try to add a post in the next few days.

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I also wanted to share a couple of interesting articles and clarify some recent news that has been published. Recently British researchers published findings that organic foods were no more nutritious than non-organic foods. While this very well may be true many people likely took away from this news that organic foods have no benefit at all. In fact, what the researchers concluded was simply that the nutrients found in organic and non-organic foods were very similar. They explicitly stated that the purpose of their research did NOT aim to understand the long term impact to humans of insecticides, herbicides, hormones, antibiotics or the genetic modification of foods -- these being the leading drivers for people to switch to organic foods. While many claim that the amount of chemicals found in non-organic foods are found at "safe" levels, the definition of safe and accumulative impact of these chemicals over time is what needs to be called into question.

Here is a link to information on the differences between organic and non-organic foods from the Mayo Clinic. Organic vs. Non-Organic

Kristine has at one time written about the potentially negative impacts of microwaves. Here is an article that dispels some of the myths. Notably, while radiation emitted from microwaves is deemed to occur at "safe" levels (there is that word again) it is considered dangerous to cook your meals in plastic of any kind, even if they say "microwave safe." Microwave Myths

Finally, WebMD has a great interactive mirosite that shows you some hidden hazards in your home. I was surprised at some of the things that were listed. WebMD Health eHome

Cyber Monday

Kristine and I finally recovered from whatever flu we both caught. It lasted about a week and a half and we both agree it was one of the worst either of us has ever had. Since regaining our relative health we've been pretty busy getting our lives back in order. We have also been playing host to a stream of visitors over the past couple of weeks. Kristine's parents and two of her sisters have been in town to help Kristine and, of course, squeeze in a few games of cards.

Kristine got the green light a week ago to start Cyberknife radiation therapy on the tumor in her shoulder. The tumor (originating in a lymph node) has reached about half the size of a tennis ball, and as a result, is causing Kristine a great deal of pain as it puts increasing pressure on the nerves and muscles in the area. She begins Cyberknife at Delaware County Hospital (one of the few and first places in the area with a Cyberknife center and an affiliate of Fox Chase Cancer Center) this Monday. The procedure lasts about an hour a day for a duration of just five days. There are some risks like potential damage to the skin, nerves and bone in the direct area. However, the alternative is to do nothing which will result in certain damage, including the possible loss of the use of her only good arm. There is also a chance that the procedure will not work -- sarcomas are generally radiation resistant. But Kristine has seen success with Gamma Knife radiation therapy, very similar to Cyberknife. She therefore has a better chance of success. The radiation oncologist advised that, if all goes well, she should see results (that is tumor shrinkage) within a of couple weeks and even as quickly as one week.

We'll keep you updated on how the procedure goes.

A Tough Week

Our Fourth of July weekend ended up being anything but celebratory. It started on Thursday when we met with our Oncologist to review Kristine's latest scans. After some disappointing news at her last appointment (three months prior) we both felt hopeless and anxious about what was to come. It was only a month later that we were introduced to the Herbalist, giving us a renewed glimmer of hope. The herbs that Kristine started taking did wonders to rejuvenate her energy level and mental state. But the true test of whether the remedies were working would be in the results of her scans. On Thursday, we found out that all of her existing lung and lymph node tumors increased in size. Additionally, there are some new small nodules in her lung that have surfaced. Even though Kristine and I both knew what to expect (Kristine's shoulder tumor is distinctly larger) we were none-the-less disappointed by the news.

The Oncologist didn't offer many options knowing that Kristine has not been open to going through chemotherapy again. There was one exchange were Kristine said that unless he had something that could cure her disease she was not open to chemo. The doctor responded that the latest drugs could offer her an extra six months or more. Kristine retorted, noting that it would come at the cost of her quality of life. She did, however, express an interest in Radiation if a more targeted approach could be taken, like that used in her Gamma Knife operation that seemed to be effective on her type of sarcoma. The doctor jumped at Kristine's willingness. He picked up the phone and arranged for an appointment with the Radiologist for this coming Tuesday.

We were both quite depressed the rest of the day and neither of us slept much that night, our minds preoccupied with sadness over the new information. Our sadness continued into Friday. To top things off, I was bedridden with a bad cold the entire weekend (fever, cough, body ache, chills and fatigue) the fever and cough from which are still lingering. And, as if she didn't have enough physical challenges to deal with Kristine started displaying symptoms of the same vicious cold on Sunday afternoon at a wedding we were attending outside of Philadelphia. Kristine left reluctantly just before the reception. In hindsight her 102 degree temperature more than validated the decision.

Two of Kristine's sisters were scheduled to come in this week from Michigan, one with her newborn baby. But now with our house being a hotbed of germs they have opted to postpone their trip by a week or two.

Kristine will continue to take the herbs to see if the new regiment is any more successful at providing results. On Tuesday, when we meet with Radiologist we will be insistent on using the most advanced and targeted procedures and equipment possible. I've already done the research to know the various methods (brands) available that have shown success with sarcoma. If we have to go somewhere else to explore our options we will do so. After all this isn't just about prolonging Kristine's life and alleviating her pain it's about buying her quality time in hopes of discovering a lasting solution.

We are really hoping to catch a break one of these days!

The Kitchen Sink

Kristine got some good news today, Tuesday. Her brain scan revealed no new disease and that the one remaining tumor, radiated earlier with Gamma Knife, continues to shrink. This was a much needed confidence boost after last week's seizure and as we head into an appointment with our Oncologist on Thursday to discuss the tumors in her lung and lymph nodes.

Our appointment with the Herbalist last week went well. He changed a couple of the herbs that he prescribed for Kristine, but didn't complicate our daily routine too much more. Two of the herbs he added I had read about earlier as having some clinical research data suggesting success in treating cancer cells. So I was surprised when he recommended them.

Kristine is doing pretty well all in all. She continues to have some pain in her right arm from the shoulder tumor that seems to be pinching a nerve. And, just when we thought that our issues included everything but the kitchen sink, our kitchen sink is completely clogged. We've been without both our sink and our air conditioning for a couple of days. The sink has a deep clog that our plumber's snake couldn't budge (old plumbing) and our forced air's blowing unit was pronounced dead by our appliance guy after one of only a few hot spells we've had all summer. All we can do is just take a deep breath and keep moving forward knowing that for any problem that's thrown our way a solution is not far to follow.

Recurring Episode

It occurred in the same place and at almost the same time of night as it had just five months ago.

Kristine was having a tough weekend. Saturday she started to have pain in her right arm and neck which continued through Sunday. We believe it is likely a symptom of the tumor in her shoulder that seems to have increased in size and may now be putting pressure on the nerves and muscles in the area.

The pain she was experiencing remained constant throughout the day. I was in and out of the house for the majority of the day leaving Kristine with just bad TV shows to watch and time for her mind to race as she dealt with her throbbing right extremity. Frustration over the pain she was forced to endure, loneliness from not having a companion with whom to commiserate, and disappointment over coming to terms with the idea that the herbal protocol we have both put our faith in may not be working left her dejected and sullen.

To help Kristine get her mind off of the pain and generally ease her mood, I got her into bed early that evening and started her massage. It seemed to work. She began to doze off at around 8:30pm. But it wasn't long after that she opened her eyes and said, with a slight panic in her tone, that her left arm had stiffened and her left hand had clenched into a tight fist on its own. This turned out to be an indicator of what was to come. Within seconds she began to seize. Like before (almost five months to the day) the left side of her body convulsed rhythmically. Her face, arm and leg jumped as the muscles contracted and released involuntarily. Fortunately, I was by her side while it happened and I grabbed hold of her from behind in an effort to comfort her until the episode passed.

When it was all over Kristine seemed to be left in a daze. She lost movement in her left side as before but regained it more quickly this time. About ten minutes later she asked if she had really had a seizure or if she had just dreamed it, indicating her lack of awareness during the incident.

The doctor told us after the last seizure that another could occur. They are most often triggered by physical stress like a fever or even the cabin pressure of an airplane. The trigger for this episode is unclear though. It could have been caused by the stress of Kristine's increased pain. However, we are nervous that there could be new developments in her brain.

We will see the herbalist on Tuesday, but due to our growing concern that his treatments are not having a sufficient impact we will also be exploring conventional options more aggressively. Kristine has said that she would be open to radiation on or resection of the shoulder lymph node(s) as long as the methods used are less general and more targeted.

The Fantastic Four

Throughout Kristine's illness there have been so many people who have reached out to help. Whether sharing their time or lending a hand, friends and family have demonstrated an extraordinary benevolence toward Kristine and I. Kristine's direct family -- mother, father and three sisters -- have been there for us every step of the way, through the best and worst of times.

But beyond Kristine's own family, there is a group of four women who have gone above and beyond for Kristine and to whom we owe our humble gratitude. Beth, Roey, Tony and Simone divide up each week. They come to our house in the morning and help Kristine to get showered, dressed and ready for the day. On Monday and Wednesday they help get her to the aquatic center in Cherry Hill for her rehab sessions. The rest of the week is all about errands and the more than occasional shopping trip, after all we are talking about Kristine.

These woman are amazing friends and truly special people. They share more than just their time, but an exceptional compassion and kindness that surpasses any that one would or could every expect. Kristine and I owe all of them a great deal of thanks for their unselfishness and generosity.

Thank you Beth, Roey, Tony and Simone for all you do.

One Step Back, Two Steps Forward

Kristine often feels like she just gets to where she can tolerate her collective set of ailments and a new one pops up. In the last few weeks her back has been the issue. The regular coughing fits and inability to sleep in any other position but on her back have caused muscle spasms and a good deal of pain. As you can imagine the accumulation of pain and discomfort take their toll both physically and mentally without the counterbalance of some noticeable signs of disease recession.

Kristine has stepped up her efforts at home to get her body back in shape and in working order. She has started walking without her cane in the house. She has also begun doing various exercises to strengthen her leg and arm muscles. Much of this renewed focus and hope is driven by the progress she continues to see in her aquatic physical therapy class. Her therapist regularly comments on the amazing advancements she demonstrates in just single sessions. She herself can see the progress with even the smallest movements, like being able to lift and hold her leg upright in the water. And in a huge step forward, just last week she started walking into the pool without assistance.

These little milestones are the things that keep her fighting. I get personal joy from hearing about the new things she's accomplished in her classes. She absolutely lights up every time she tells me about them. The energy and spirit she expresses make every ounce of this struggle worthwhile.

We are not scheduled see the herbalist until the end of the month. Kristine has several out of town visitors scheduled to come into Philly in the mean time to keep her entertained. This past weekend her very good friend JJ was in town from Chicago and this upcoming weekend another of her good friends, Alison, is visiting from San Francisco. Each visit gives us both a welcome break from the monotony.

Second Visit

We had our second visit with the herbalist last Tuesday.  The appointment went well.  Kristine was advised to remain on the same routine for another month.  He noticed immediately that Kristine was brighter and more energetic than she had been at her last visit, although he was concerned about how much she was coughing -- a symptom that has remained constant for several months now.  

Part of the herbalist's evaluation involves a procedure where he looks into his patients' eyes with a magnifying glass. (I have read some research that tested this alternative diagnostic approach and concluded it to be an ineffective and inaccurate tool.)  While looking into Kristine's eyes he casually asked if she had been having any back pain.  Interestingly, since our last visit with the herbalist Kristine had been getting spasms in the left side of her back, likely from the coughing fits.  The herbalist seemed to pick up on this right away without any mention of it from us.  This may have been just a coincidental finding, but we were none-the-less impressed by his unaided discovery.  He continued to express a positive prognosis for Kristine.

Two of Kristine's high school friends, Jill and Missy, were in Philadelphia this past weekend to visit and help.  Kristine enjoyed the visit and had fun reminiscing over old school days.  Visits from Kristine's friends and family are a welcome distraction from her regular routine.  Kristine has some additional visitors planned for the next few weeks.  

Other than that there is not much to report.  

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FYI-

In our quest to eliminate toxins from our daily lives we did want to pass along one product discovery with which we are particularly satisfied.  Major label deodorants with antiperspirant all contain Aluminum - a material known to increase the risk of cancer and thought to be a major cause of breast cancer.  The problem is that natural antiperspirant options are often worse than not wearing deodorant at all.  Kristine and I recently found a natural brand that actually works to deodorize and prevent sweating.  The brand is earth essentials and can be found at Whole Foods and other health food stores.  Even the unscented version works better than my old Speed Stick used to do.  Below is a photo of the product so you can find it more easily.  We highly recommend it.    

 

Herbal Cocktails

In the last blog post I talked a little bit about Kristine's new holistic regimen.  At the time, we thought we could quickly fall into a routine and not spend too much extra time managing all the steps. We did get on a routine, however, the regimen has taken up a whole lot more time than we anticipated.  

The prescribed holistic treatment consists mostly of drinkable supplements.  There are three that are mixed with a small amount of fruit juice (to cut the taste) and taken five times daily. Four other supplements are taken just two times daily.  The supplements are all made by the herbalist from his organic farm in Ohio.  Each bottle is clearly marked with its ingredients and includes a variety of plant based items ranging from the common (e.g., Witch Hazel, Flax Seed and Echinacea) to the obscure (e.g., Yellowdock, Graviola, Mugwort, Skunk Cabbage Root and Elderberry Leaf).

In addition to the herbal cocktails, there are several other nightly steps that were advised.  First, a nightly head to toe body rub down with olive oil. The idea is that olive oil is a good natural oil to lubricate during the massage, is loaded with antioxidants and supposedly is absorbed by the body through the skin.  The massage is supposed to increase the flow of the lymphatic system to aid in the expulsion of toxins and waste created from taking the herbs.  (I'm convinced that Kristine called ahead on this one -- nightly massages seem a little too good to be true for her). Second, every other night Kristine is to take a bath with a few tablespoons of Bentonite Clay mixed into the water.  This "clay" allegedly absorbs toxins and radiation that is excreted through the skin during the bath.  Finally, each night before bed Kristine has the bottoms of her feet covered in a salve (made by me) of crushed garlic and Vaseline, with which she sleeps through the night.  This is to aid the elimination of toxins.  The treatment stems from the Chinese and Japanese belief that the feet carry a great deal of toxins in our body.

Under normal circumstances, adding these items to our nightly ritual might not be that large of a time burden.  But with Kristine's condition, specifically the paralysis, everything takes longer.    

          

Admittedly some of these steps seem far-fetched, but we have committed to following every procedure prescribed to give the treatment the bes chance of success.  Kristine has only been on the program for two weeks, so it is still too soon to have seen any changes.  However, Kristine is feeling more energy than she has in some time and her emotional mood swings have disappeared.  She is still coughing a lot throughout the day, which causes her to become short of breath easily.

We had an appointment with our Oncologist last week.  He was not as concerned about the growth rate of the lung tumors as we were initially and, in fact, reported that some of the lymph node tumors had shrunk in size (this was prior to starting the herbal medication).        

We will be meeting with the Herbalist in a week and a half to discuss Kristine's progress and make adjustments to her regimen accordingly.  

Thanks for your patience these last couple of weeks while we get used to our new schedule.   

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Note about Skyping Kristine:  please text or call her first so that she can get the computer set up.   

New Regimen

I apologize for the delay in posting this week. I originally wanted to wait to fill you all in on our appointment with the Herbalist this past Tuesday. The problem is that he gave us some pretty extensive stuff to incorporate into our daily routine leaving little time for weekday evening blogging. So rather than leaving you completely in the dark all week, I thought I would give you all the quick scoop to tide you over until Sunday night.

Kristine's symptoms continue to cause more concern. Her cough is more frequent than in previous weeks and she has started to cough up small amounts of blood again. Her right shoulder and right side of her neck is in pain as the lymph nodes swell with tumor growth -- the lump on her shoulder sticking out about an inch high and measuring about 2 inches wide. She has developed painful and acute headaches on the right side of her head that continue on and off throughout the day. We do not have the scan results back from the CT scan of her neck and shoulder yet. They will provide us with a better picture of how extensive the disease has spread into her lymph nodes. We are planning to meet with Dr. Staddon to discuss this new headache development and the potential options we have as Kristine's breath becomes more and more restricted.

Our trip to the Herbalist was encouraging. Although, as I mentioned the regimen he has Kristine on is quite extensive. It will likely take us a few days to fully work into our daily routine. I will give more detail this Sunday, but let's just say I feel a little like a wizard in training at Hogwart's mixing potions made of rare herbs and roots. Though I frankly don't care if it's made out of toad's wart if it works.

Thanks for your patience.

Closed Doors, Open Doors

Kristine had to deal with another piece of disappointing and frustrating news this week. The rehabilitation center that she has been attending for physical and occupational therapy on Tuesdays, Thursdays and Fridays informed her that her last session will be next Friday, May 1. They explained that she's not progressing enough to qualify for insurance coverage at this point. She still has several sessions left under our coverage for this year, but the sessions will only be approved by our insurance provider if she is showing continued signs of progress. Kristine's therapists told her that if she's able to strengthen her leg and/or arm muscles during her time off there is a chance that she could come back in a few months to continue therapy.

When Kristine was first paralyzed the neurosurgeon told her that whatever movement she would regain would likely occur within the first six months. Kristine has carried this statistic around with her since her brain surgery last October (about 6 months ago). So, of course, when the news came that she was no longer progressing physically, it hit her particularly hard. For Kristine it was like the window of opportunity had passed her by and her hopes of regaining mobility and independence disappeared along with it. Kristine will still attend aqua therapy two days a week to keep in shape and continue to work toward improving her physical condition.


After last week, we felt like we were out of options in Kristine's cancer fight. While we are still exploring conventional options like surgery, the available options are nothing more than a way to buy time. However, an interesting potential lead did surface though in the last few days. A credible customer of my father's gave him some information about an Herbalist in Ohio that helped a member of her family resolve his cancer -- he is still cancer free today after several years in remission.

Needless to say we have heard a lot of these claims before and have remained very skeptical. However, we are willing to take desperate measures these days, so we gave the man a call. It so happens that he'll be about an hour and a half outside of Philadelphia next week meeting with some other individuals. He put us in contact with a local man and his wife who are helping to organize and host his visit. When we contacted the family the man told us that they were first introduced to Mark (the Herbalist) when their son was diagnosed with a terminal cancer and given 2 months to live by John's Hopkins' cancer center. Without any information from us on Kristine's condition, he added that his son had a sarcoma that had metastasized into his lung. He claimed that in just 2 months his son's scans showed that the cancer had vanished from his lungs and in a total of 8 months his son had no readable traces of cancer left.

Of course, this all sounds too good to be true and I have a difficult time believing any of it. But for the time being it's providing us with a little more hope than we had yesterday and a little more inspiration to push us forward and fight. We set up our appointment for next Tuesday. We will be sure to keep you updated with the latest.

Scared Certain

On Wednesday, I spoke with Dr. Staddon's office about the results of Kristine's latest scans. Kristine prefers to avoid going in for office visits if she can these days.  The entire experience gives her a great deal of anxiety with little achieved by the end to provide any hope.  Dr. Staddon's nurse practitioner explained the results.  I'll get right to it.

First, the positive news.  The area in Kristine's brain where the tumor was resected shows no signs of new disease or abnormality.  The second tumor -- that which was treated by Gamma Knife radiation -- continues to shrink significantly. There are no new signs of additional disease in Kristine's brain. It's amazing that what we at one time thought was a certain death sentence has been downgraded to a secondary concern to monitor.   

On a more melancholy note, the tumors in Kristine's lungs continue to increase in size.  In October, there were five tumors identified.  The latest CT scan shows nine tumors of various sizes -- the smallest about 0.8cm x 0.6cm and the largest about 4.3cm x 2.3cm.  The growths have caused Kristine to cough more frequently and, occasionally, experience some shortness of breath when exerted (for example, after climbing stairs).  The doctor did not request scans of the lymph nodes, but we can assume that the same pattern is likely at play.  Especially since Kristine has been experiencing more pain in her shoulder and at least one tumor is clearly visible and larger than it was several months ago.  

Throughout our experience with this disease, Kristine and I have always had a plan.  When first diagnosed with cancer, we quickly got Kristine on an aggressive chemo regiment.  Once that was complete it was on to heart surgery to remove the remaining tumor.  Once it felt like Kristine was out of the woods, she got herself on a strict diet to build up her immune system.  Then the brain tumor hit and there was a strict rehabilitation schedule to follow and Gamma Knife surgery in which to put our faith.  But now we are facing what seems to be a dark tunnel, no options in front of us and no concrete plan to inspire us and give us hope.  We are both scared, but Kristine especially.  She has to live with the pain that reminds her constantly of her affliction.  It leaves the rest of us only to image how it feels to experience a lack of control over what's happening inside one's own body.  

So where do we go from here?  We continue to explore holistic treatments and are talking about getting serious about our diet again (we fell off the wagon in the last 6 months).  However, an important element in this equation is our continued and absolute belief that Kristine will prevail in this fight.  We sincerely believe that something will present itself to us as a solution to heal her. Just as when we thought brain cancer was the end of the road and a cutting edge treatment was employed to solve the problem, we fully believe that another solution will materialize.  It is our unwavering belief that drives us.  Not simply hope, but rather a certainty --however naive -- that we will soon see some light at the end of this dark tunnel and move on to the next chapter in our lives.

Laugh Therapy

On Friday, Kristine went for her 3 month scan appointments -- MRI of the head and CT of the chest.  It was the standard procedure.  First to Pennsylvania Hospital at 9 am for the CT.  Of course, we forgot to request the referral ahead of time so we had to call our primary care physician's office to process an emergency request (we've learned that it's best just to lie and get it done quickly then to try to explain why we didn't allow them the requisite 72 hours for processing).  The referral appeared in the Penn health system records within minutes.  The CT took about 40 minutes including the wait time.  

When we were through we wheeled across the street to Spruce MRI for Kristine's next scan. The staff there are all very friendly and know Kristine by name.  We wait for about 20 minutes before the nurse assisted Kristine into the back room for her procedure.  She asked Kristine if she would be listening to her usual radio station, B101, for the 30 minute scan.  Kristine replied to confirm the selection.  The morning scans were running behind schedule and I had a meeting to catch in Wilmington that afternoon -- 45 minutes away.  Our friend Simone was nice enough to meet Kristine a little early at the MRI office to pick her up so I could get on my way.  It was raining hard that day but they decided to go out to lunch after she was finished anyway. 

Kristine's cough has been steady.  It gets a little worse in the evening when she is tired and whenever she is tense.  She has not coughed up any blood since she was in Texas several weeks ago.  The lump on her right shoulder where cancer has developed in a lymph node looks to be stable in size from what we can see.  Although Kristine has noticed more pain in her right shoulder, arm and neck.  This is likely related to the swollen lymph node.  It could also be related to the extra work she continues to do on her right side to compensate for her left.  We will hear back from both the oncologist and the neurosurgeon this week to discuss the results of the scans. This is always the most stressful period -- waiting for results. 

On Sunday, the weather was nice.  Kristine and I wanted to get out of the house and enjoy the warm temperature.  We have found it difficult to use the wheelchair in the city.  The uneven concrete and brick walkways make for a jarring and unpleasant stroll for Kristine.  Just the thought of pushing her around reminds me of our escapes from the rehab center in late Fall last year.  She relished in the bumpy ride then.  Instead of barring the terrain by wheelchair, we opted to go for a ride around the city in the car.  So with the windows down and Rufus in the back, we drove through the streets of Philadelphia watching the locals with spring fever and listening to Jim Gaffigan's new comedy routine.  We laughed nearly the whole trip until the album was over and then headed home.  The laughter was good therapy for both of us.

Skype Me

Kristine and I made it back from Houston last week without any trouble. Kristine had mixed feelings about coming back home to Philly. She was sad to leave her parents and the relaxing lifestyle she was able to carried out with them. At the same time she knew she had to get back on a regular rehabilitation schedule if she is going to continue to make progress physically.

Kristine started rehab right away last week. Her first session was challenging. She said that she noticed some loss of muscle strength from a lack of regular exercise. Her therapist also pointed out that she had begun to compensate for her leg weakness when walking by swinging her left leg out instead of dragging it straight through -- a critical technique for regaining a more natural gait.

We are waiting to hear back from Dr. Staddon's office to confirm Kristine's appointments for scans. His office is a bit chaotic at the moment with his nurse practitioner out on maternity leave and his coordinator having been out on vacation. We will find out early this week when Kristine's scans are and by early next week we should have results to report.

Kristine also wanted me to let everyone know that she is open to talking to anyone who is interested on Skype. It's a lot easier for her to talk this way since she doesn't have to hold a phone up to her ear. If you are interested you can search for her name on Skype (she is the only Kristine Becker in Philadelphia) or email one of us for her address.
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Finally we both wanted to share this article with you all. It's about a recent study on diet and it's correlation to cancer and other disease. NPR NEWS LINK

An Uneventful Week

For me this is actually quite refreshing, but I really don't have much of anything to share this week. Unfortunately for you it makes for a pretty boring blog post.  

Kristine will be down in Houston for another week and a half. I'll be joining her and her parents starting later this week until the middle of next to fly her back home to Philadelphia.  She is doing very well, enjoying her time with her family and relaxing in the warm Texas sun before coming home to a routine of regular Physical Therapy. The blood that was coming up when she coughed has improved. It seems to be showing up in only very small amounts and only every couple of days versus everyday as before.

Other than that things have been entirely uneventful.  Hopefully after reconnecting with Kristine and spending time with her parents this next week I will have at least some good stories to tell. For now though I'll relish in the tranquility of an absolutely unremarkable and ordinary collection of days.  Of course, I say all this knowing that even uneventful weeks must feel anything but ordinary to Kristine in her current state.  

Until next week.  

In Her Shoes

When I asked Kristine what I should write about this week she replied, "shoes." That's right shoes.  With all that is going on in her life and all that you would expect her to be absorbed with during such a time, Kristine has but one thing on her mind. She is preoccupied by, if not obsessed with, the fact that she has an entire closet full of shoes and is restricted to just one pair of sneakers. This is, of course, because she needs added stability while she regains mobility in her left leg. However, this fact doesn't help abate her desire to buy and wear a variety of different types of footwear.   

I can't exactly put myself in her... ah-hum... shoes partly because I don't have her disability leaving my options completely open, but mostly because I can't even fathom having any sort of obsession with this attire for the feet. Even when I have had more than one pair of shoes at any single point in time (meaning two or maybe three if you include sneakers or flip-flops) I still gravitate toward that same familiar, established, no-need-to-break-them-in-any-more, comfortable pair of shoes.

For Kristine though the idea of wearing just a single pair day in and day out is torturous. She much prefers to have an assortment of different options at all times. When we travel anywhere at least half of our luggage is her shoes (this is no exaggeration). And buying shoes is like going on safari -- she hunts down her prized pair even if they just look good in her closet next to her others.

At the moment she can't even justify buying an additional pair of sneakers because the brace on her left ankle stretches the shoe out and she doesn't want to ruin another pair.  Knowing Kristine though this problem will not persist. Just like her dissatisfaction with the plain and unattractive canes she was finding eventually led her to a modern fashionable one from a London based company (switchsticks.com), she will again find a way to improve her look within the confines of her physical limitations.  

On a more serious note, ever since she has gotten over her respiratory infection Kristine has been coughing up a very small amount of blood almost ever day.  We talked to both our primary physician (who recently saw Kristine for her infection) and her Oncologist about this issue to better understand the severity. Both suggested that it could very well be related to the prior infection or to the frequent coughing that she has been having. Of course, given her current condition -- cancer in her lungs -- the blood is a cause for some concern.  Our Oncologist suggested that Kristine just watch it while she is in Houston to make sure it doesn't get any worse and to set up her 3 month check up scans as soon as she is back in Philadelphia later this month.  Neither doctor seemed overly alarmed given the very small amount of blood that is presenting, but just cautioned us to keep an eye out for more severe symptoms.  Otherwise Kristine is doing very well, feels great and is enjoying the warm Texas weather, even if she does have to enjoy it in sneakers. 

Taking It Easy

Kristine is doing very well down in Texas with her family.  The weather has been nice and warm giving Kristine the opportunity to take in some sun.  Those of us on the East Coast are surely jealous, especially given the impending snowstorm that is headed our way.  She has started on a couple of natural therapies that have made her pretty tired, but the extra rest is probably doing her some good. Her mother has been disciplined about stretching her left arm and shoulder.  It's critical that Kristine keep her muscles loose so that when she does regains movement she will maximize her range of motion.

We have started to talk to one another via Skype.  Skype is a free application that allows you to talk over the Internet at no cost with anyone else who is also on Skype.  You just talk through your computer's microphone and speakers or through a headset.  You can also use a webcam to view one another live, which is what Kristine and I have been doing.  It's so much better to see the person on the other end of the line, especially for someone who does not like talking on the phone much like me.   

I've posted a slide show of pictures in the upper right corner of the site.  You can either watch them here on the blog or you can click any of them to view a larger version of the slide show.  I know, it's about time I got some photos on the site.  Enjoy. 

Texas Size Surprise

I've had to remain pretty evasive about Kristine's plans to visit her family in Texas in the last few posts. Kristine and her three sisters have been planning to surprise their father, Jim, for his 65th birthday for some time(their mother Connie was, of course, in on it as well). They succeeded this past week when on Wednesday Colette and Stephanie caught him by surprise by showing up unannounced. Then again this past Friday, Kristine and Gretchen where waiting for him when he came home. He was floored and truly had no idea. It isn't often that the whole Becker family is together in one place. Especially under the current circumstances with Kristine in her current condition and Colette due with her first child soon. They are visiting all this week, a week likely filled with card games and lots of laughter. Although, as I understand it, the girls took over the living room and main television to watch the Oscars, relegating Jim to the bedroom for the evening.

Kristine will remain in Texas for the next few weeks. It's a great chance for her to relax in some warmer weather and focus on her alternative natural treatments. For me it is a much needed respite and a chance to regain energy before we begin our schedule all over again. Although a have to admit that I am already a bit bored all by myself. I'm getting a little taste of what her family and friends must go through being on the outside with only periodic updates wondering if she is OK. To an extent I think the discipline of a routine helps bring a feeling of control to an otherwise intractable situation.

Before Kristine left for Texas her cough, which previously was nagging but never serious, got much worse. In the week leading up to her trip her cough began yielding some fluid, a sign that she had likely contracted some kind of infection. Kristine went to our primary care doctor to get checked out. He was initially concerned that she might have pneumonia. However, subsequent x-rays proved otherwise. She was given an antibiotic to kill whatever was causing her illness and she has since noted that her cough has improved significantly.

V-Day

My apologies for being a day late on this week's post. I was a bit turned around by the President's Day holiday, which I had off, and thought that today was Sunday.

This past Saturday was Valentine's Day, exactly two year's to the day that Kristine was taken into the Aspen Valley Hospital and diagnosed with cancer, ironically in the veins leading to her heart. It wasn't until I sat down to right this post that I even remembered this fact -- neither Kristine nor I mentioned it all weekend long. I guess it's the kind of anniversary that you try to suppress from your conscious memory.

Kristine and I agreed when we first met that Valentine's Day was not a holiday that we were into celebrating. To us it is just a marketing hoax to sell chocolate and flowers. Not to mention it's impossible to get a reservation anywhere unless you book months in advance. So Kristine invented our very own day, "I Love You Day." It is once a year on any day we choose and it's always easy to get a dinner reservation.

Ever since our approximately 8 year boycott of Valentine's Day and the genesis of I Love You Day we have not ventured out on the holiday. This year, however, we got tickets to see Rufus Wainwright at the Kimmel Center in Philadelphia. We have been looking forward both to seeing Rufus in concert and to experiencing a show at the Kimmel Center for a long time. The only problem was that the show fell on V-Day, forcing us out into the mayhem of couples scrambling to make their reserved dinner appointments with flowers and chocolates in hand.

The concert was great but it was a challenging experience for Kristine to fight the show crowds. Upon entering the center Kristine became anxious and a bit panicked. She struggles to remain stable while walking as it is without the threat of being bumped by a sea of hurried people moving in all directions. We made it through unscathed on the way in and left a little early on the way out to avoid the crowds. All in all, I think it was good for Kristine to build some confidence in physical abilities.

Thing are well otherwise. Kristine is making good progress in therapy. This is especially true in aqua therapy where she has been seeing a measurable difference in her performance in just 4 sessions, which has had a positive affect on her motivation and attitude. Kristine continues to fight the bug that is going around. This has exacerbated her cough and caused several fever spikes in the last couple of days causing us both a great deal of concern. So far though we have managed to keep the fevers down and she has bounced back quickly.

Clean Brain Scans

Aside from the cold that she picked up this past week, Kristine is doing very well. Her temperature increased a couple of times over the week, which of course had us both pretty nervous given the linkage to her risk of seizure. We were able to manage her fever down though with a little Tylenol.

We met with Kristine's neurosurgeon, Dr. Lee, on Monday to discuss Kristine's MRI results and the medication he initially recommended after her seizure. He had nothing but positive news for her. He said that the area around the removed tumor in her brain looks clean of any disease and that the second tumor that received Gamma Knife Radiation is shrinking (a sign that the tumor cells are dead and being destroyed by the body). And contrary to his original position, he did not feel that it was necessary to do any additional Gamma Radiation on the first tumor location since it looked so good in the scans.

Dr. Lee also agreed that it was not necessary for Kristine to take seizure medication if it decreased her quality of life and her ability to recover physically. He said that she just needed to be careful to avoid stress on her body. Fever, illness, exhaustion, dehydration and lack of sleep among other things could trigger another seizure.

Kristine surprised Dr. Lee when she moved her hand after he asked how she was progressing. He had not expected this kind of progress so quickly. He was also pleased to see how well she could move her leg when she walked.

Our friend Shannon is in town this weekend visiting. She and Kristine got to catch up, watch bad TV and give me a little break from our routine. Fortunately we do not have any doctor's appointments this week, Kristine just has her standard physical therapy schedule. At some point in February she is planning a trip to see her parents in Texas. She will miss therapy for a few weeks but the sunshine and warmth will do her some good. Plus, as attentive as I am to her needs, her mom will undoubtedly be much more diligent at following through with her stretching routine.

Unmedicated

After Kristine's episode two weeks ago Thursday her neurologist put her on an antiseizure medication. His concern is that having had one seizure Kristine is now at a higher risk of having another. Kristine took the medication as directed for a few days, but almost immediately she experienced some adverse effects. She was getting very dizzy, began to get depressed and started having increased problems with her muscle coordination -- a concern given her current physical state. Kristine, frustrated with the side effects, stopped taking the pill and experienced instant relief from the past days' symptoms. We have an appointment with Dr. Lee on Monday to discuss the medication and Kristine's next steps. The doctor will likely encourage Kristine to continue taking the medication for fear of reoccurance, however, it is unlikely that Kristine will take heed of his advise.

This past Wednesday we met with our cardialogist Dr. Miles to discuss Kristine's heart pauses and another of her medications. The doctor urged her to get a 24 hour halter monitor hooked up to measure her heart rate over and encouraged her to remain on the medication until we could review the results. As you may recall, the premise driving the medication began after Kristine's brain surgery when the doctors found that her heart experienced occational pauses. At the time they recommended installation of a pacemaker to prevent a more prolonged pause that could cause Kristine to faint or, in a more unlikely but serious scenario, for her heart to stop altogether. Kristine chose to go on the medication in lieu of the pacemaker. In our Wednesday meeting with the doctor Kristine insisted that she go off of the drug. Dr. Miles again reiterated the risks of doing so. Kristine responsed to the doctor's rebuttel explaining that she wanted to deal with it if and when more serious problems occur, the most likely of which (fainting) seemed managable. He had trouble disagreeing with her argument.

In both cases, discontinuing the medications did a great deal to make Kristine feel better emotionally and physically and she is feeling quite a bit better. From her standpoint she is fighting against the odds of an abbreviated life, so living miserably with the side effects of drugs that simly aim to prevent small incremental risk of death doesn't make a whole lot of sense. So for now she'll stay off as much medication as she can to feel as good as she can and focus on staying strong.

Fever Pitch

On Thursday afternoon, Kristine called me at work. She was not feeling well, complaining of a fever and stomach ache. When I got home she was pretty worked up. She normally has trouble getting comfortable - we all take for granted the small adjustments we make to our body's position while remaining stationary for any length of time -- but for Kristine any additional malaise can be a tipping point to emotional distress. I think just my presence helped to calm her down. I got her to bed where she was able to doze off for small intervals as I lay at her side.

She periodically awoke shivering with chills despite several layers covering her. All evening I monitored Kristine's temperature. At seven o'clock it had reached 102.7degrees Fahrenheit, but by eight it was down to 101.5. The reduction in temperature helped us both to relax enough that we were able fall asleep.

Then, at around 9 o'clock, Kristine's body jolted and she let out a horrid, muffled wail. I jumped up from my sleep to see Kristine's left arm and the left side of her face and neck in a quick, rhythmic and violent spasm. Her entire body moved in unison with her convulsing left side. I ran around to her side of the bed lifting her torso upright in order to sit behind her and press her back against my chest. I grabbed hold of her body grasping her left shoulder with my right hand and the side of her face and neck with my left in a vain attempt to slow or halt her contracting muscles. Kristine was aware but groggy from her sudden awakening from a deep medicated sleep. Her attempts to cry out were suppressed by her inability to control her mouth -- her efforts to speak yielded only a dull, muted bellow and a stream of involuntary saliva from the corner of her lips.

The episode passed in less than a minute but it seemed like several. Kristine was fully conscious during and after the event. We were both shaken by what had happened, but I can only imagine how scared Kristine had to have been. As a result of what we presumed to be a seizure the left side of Kristine's face remained drooped and the movement she had previously established in her left hand was no longer evident.

My first reaction was to call the doctor's office. Kristine at first opposed the idea, fearful of yet another trip to the ER, but she quickly came around convinced that it couldn't hurt to call. The on call resident in the Department of Neurosurgery responded promptly to his page. After reading through Kristine's file and hearing the details of the night's story he was less alarmed than we expected. He said that the incident was isolated (the spasms had not reached her leg) and was likely an "uncomplicated" seizure (classified as such based on Kristine's alert mental state). He said that a trip to the ER was not necessary, but to watch for additional deterioration and instructed us to pay a visit to the office first thing in the morning to exam Kristine more closely.

Kristine was quite composed after the call. An hour had passed since the seizure and Kristine calmly picked up her left hand, wiggled her fingers and said that her movement had returned. Glancing at her face I noticed, to my delight, that her facial muscles had also rebounded as she flashed a soft smile.

The entire moment was surreal. But just after the seizure and before the doctor's call Kristine said something that was all too real. She instructed me soberly and with little emotion that should anything happen I was not to, "do anything drastic." Implying that should we face another decision to extend her life with any consequence of additional physical impairment, the alternative was not just preferred but mandated. We have talked about this several times especially after her brain surgery, however, it never gets any easier to face. Although I know that I have to be prepared I remain optimistic that I will not have to encounter such a decision anytime in the near future.

Kristine is doing well now, though still slightly shaken. Her MRI did not return any urgent issues. In fact there is a strong possibility that Kristine's fever triggered the seizure as an isolated occurrence verses a more serious clot or hemorrhage. Our neurosurgeon has suggested at a conservative approach forward. We will be meeting with him on February 2nd to discuss potentially treating the original site of the resected brain tumor with Gamma Knife radiation. Kristine and I are apprehensive about this since it could set Kristine's physical rehabilitation back further or even permanently. We will cross that bridge when we come to it.

5 days to 3

As it turns out Kristine will not be continuing day rehab through January. Instead her rehabilitation team has decided that she would get just as much from the out-patient program. She will continue her full day program until this Friday and transition to the 3-day program the following week. Her planned schedule is Tuesday, Thursday and Friday from 8am to 10am. I will be continuing to shuttle her to the rehabilitation center in the morning and we will continue to rely on friends to pick her up.

Kristine has been getting around pretty well on her own so her time alone at the house, though challenging, will be manageable. She will welcome guests throughout the day to break up the monotony of television, books and phone conversation and we will set up local emergency contacts for her in case of any issues. We are going to have to be even more organized headed into this next set of circumstances. Everything from making lunch to answering the door presents difficulties and hazards for Kristine. We have to ensure that things can be accessed easily and used with just one hand. It's amazing how many things we take for granted in our daily routines, things that become substantially more difficult to nearly impossible with the use of only one arm. Take washing your good arm or opening a jar for example. Even more difficult, try moving a glass of water from one room to another when doing so requires you to use your only able arm to balance your walk with a cane.

The pain and discomfort that Kristine is experiencing is impacting her mental fortitude. Her left shoulder is tight with involuntary tone while her arm hangs out of socket causing sharp pain. Her right shoulder is swollen and tight from the remaining tumors in her lymph nodes. Kristine's hot flashes have also reemerged making it difficult to regulate her temperature. The tumors in her lungs are inducing uncontrolled coughing which makes her whole body stiff and even more uncomfortable. All of these symptoms make getting through the day frustrating and exhausting. Kristine is doing an amazing job of holding herself together and fight on, but she could definitely use some reprieve.

More Rehab

Kristine will be continuing day rehab through January. While this means another few weeks of crazy schedules for Kristine, me, and the friends that have been helping with transportation it's, more importantly, a great chance for Kristine to progress closer toward physical independance. Our insurance will cover the day program as long as our doctors and therapists believe that it will maximize her recovery and she continues to see positive results beyond what she might from normal activity. This is good news since once she leaves the day program she will move to the out-patient program, which is limited to 40 visits a year. Most everyone agrees that the more intensive therapy she can receive in her first six months of paralysis the better chance see has of regaining close to full movement.

Other than this there is not much to report. I am going to limit the blog posts to once a week and will post them by Monday morning each week. I will only post more frequently if an emergency arises or we have dramatic news to report. I think this will give everyone a more regular update.

Tiny 'Stines

Happy New Year to everyone checking in on Kristine's progress. We are certainly hoping for and looking forward to some good news and brighter days in 2009. All in all, 2008 was not all that bad up until the last few months, of course.

Our holidays were nice. We stayed in Philadelphia and enjoyed some quite time by ourselves as well as some fun times with friends. Kristine had rehab everyday except Christmas and New Year's day so we maintained a fairly hectic schedule. We enjoyed Christmas dinner locally with friends. Kristine, cane in hand and equipped with a nickname her father gave her growing up as a thin young kid, "Tiny 'Stines" became our personal version of a Christmas Carol's Tiny Tim.

Progress is slow but continues steadily for Kristine's physical rehabilitation. She has recently begun walking without her cane in therapy and at home with assistance. This is a big step forward as her therapists try to push her to the next level. She is doing more intense weight bearing exercises on her arm and leg to improve the chances of activating some of the larger muscle groups (such as her shoulder, bicep and hamstring) that have been slow to respond. Periodically, Kristine will discover a new movement of which she was not previously capable. I can always tell the instant it happens by her elated expression -- characterized by a proud smile and eyes welling on the verge of tears.

Since Kristine's brain surgery and subsequent paralysis, we have been squarely focused on her physical recovery. Our friends, both local and not-so-local, have been amazingly supportive, picking Kristine up from rehab and spending time with her to ease the frustration of living with her disability (although we like to think of it more as a short term set back). But in the last several weeks the swelling and pressure in Kristine's neck and shoulder have caused us increased anxiety over her cancer and it's progression. We have both been acutely preoccupied and concerned by it, harboring our distress about what the next scan report would bring. Kristine has several symptoms that had us worried. There is a visible lump in Kristine's right shoulder that has taken shape in just the last few weeks. Additionally, Kristine has been getting a tingling sensation on the surface of the back of her head, her cough has been getting more frequent, and she is getting numbness in her right fingertips. We both had convinced ourselves of the worst.

This past Friday, we received the results of Kristine's latest scans from Dr. Staddon's office. Kristine, apprehensive about the potential report, opted not to pay an office visit to the doctor. Instead she had me accept the update over the phone and relay it to her. Neither of us were expecting the news we got. Although the news was not altogether positive, it was far better than what we were expecting. A couple of the metastases in Kristine's lung are marginally bigger (approximately .1cm x .1 cm) with the remaining mets unchanged in size and no new lung disease. There is no remaining disease in the brain or blood vessels that the pathologists can detect. There is, however, inflammation of a few small lymph nodes along the top of Kristine's right shoulder. These inflamed lymph nodes were previously undetected. Although it is possible that the inflammation is being caused by some other infection, it is more likely new cancerous metastases. The nurse practitioner who delivered the report said that the lump that we can see and feel in the shoulder is likely exaggerated in appearance due to its location. She said that the numbness in Kristine's fingers could be a symptom of the swollen node pressing against a nerve in her shoulder or a delayed effect of the gamma knife radiation.

The news was a huge relief to both Kristine and me. I think it gave us both the ability to take a deep breath, regroup and focus on a game plan to kick the crap our of cancer in 2009 -- or as Kristine likes to say, "kick cancer in the ding-ding" (I'm not as keen on this expression for obvious reasons).

As we enter a new year, we hope for promising new beginnings and, to use Tiny Tim's line, send a message to all our loyal supporters, God Bless us everyone.