Saturday, December 26, 2009
Friday, December 11, 2009
No Stone Unturned
by Ryan at 10:31 PM 20 responses
Saturday, November 28, 2009
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.
by Ryan at 12:50 PM 23 responses
Sunday, November 8, 2009
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.
by Ryan at 6:20 PM 28 responses
Sunday, October 11, 2009
Trials and Tribulations
Kristine's mother left Philadelphia a week ago this past Friday. It was great having her in town for a couple of weeks to help. Kristine enjoys having her company and I enjoy getting a little break from the routine. I took this past week off from work to cover some gaps we had in our schedule of weekday helpers, spend some time with Kristine and generally try to recover from burnout. You don't realize how fatigue you really are until you slow things down for a while.
by Ryan at 8:18 PM 18 responses
Sunday, September 13, 2009
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.
by Ryan at 10:26 PM 16 responses
Tuesday, August 25, 2009
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.
by Ryan at 8:00 PM 13 responses
Sunday, August 9, 2009
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).
by Ryan at 10:06 PM 11 responses
Tuesday, August 4, 2009
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.
by Ryan at 3:53 PM 17 responses
Shocking
As promised here is an update on Kristine, the second this week.
by Ryan at 9:14 AM 2 responses
Sunday, August 2, 2009
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.
by Ryan at 8:42 PM 1 responses
Sunday, July 26, 2009
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.
by Ryan at 7:01 PM 13 responses
Monday, July 6, 2009
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.
by Ryan at 8:30 PM 21 responses
Tuesday, June 30, 2009
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.
by Ryan at 9:29 PM 5 responses
Monday, June 22, 2009
Recurring Episode
It occurred in the same place and at almost the same time of night as it had just five months ago.
by Ryan at 6:58 AM 8 responses
Monday, June 15, 2009
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.
by Ryan at 8:33 PM 6 responses
Monday, June 8, 2009
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.
by Ryan at 7:23 AM 4 responses
Monday, May 25, 2009
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.
by Ryan at 9:21 PM 8 responses
Sunday, May 10, 2009
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.
by Ryan at 10:08 PM 6 responses
Wednesday, April 29, 2009
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.
by Kristine at 10:37 PM 16 responses
Monday, April 20, 2009
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.
by Kristine at 9:12 PM 13 responses
Monday, April 13, 2009
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.
by Ryan at 6:56 PM 9 responses
Monday, April 6, 2009
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.
by Ryan at 7:19 PM 4 responses
Sunday, March 29, 2009
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.
________________________________________
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
by Kristine at 10:28 PM 6 responses
Sunday, March 15, 2009
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.
by Ryan at 10:39 PM 4 responses
Sunday, March 8, 2009
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.
by Ryan at 10:11 PM 5 responses
Sunday, March 1, 2009
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.
by Ryan at 4:38 PM 9 responses
Sunday, February 22, 2009
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.
by Kristine at 11:47 PM 5 responses