Cathy lost her battle against cancer on Wednesday, February 17, 2010 at 12:30 AM surrounded by her family and a dear friend. The grief is horrible, but we do not "grieve like the rest of men, who have no hope" [1 Thes 4:13]. We share her belief in the atoning sacrifice of Christ for salvation and the hope of glory.
Cathy's love of God and passion to share the gospel of Christ animated her and endeared her to so many who loved her in return.
Visitation will be in the commons of College Church in Wheaton from 3:00 - 8:00 PM, Monday February 22 and her memorial service will be in the sanctuary on Tuesday, February 23 at 11:00 AM. Burial will be private.
Soon more information will be available at hultgrenfh.com
Wednesday, February 17, 2010
Wednesday, February 10, 2010
Dateline 2/10/10
We [Cathy, her sister Kay & brother-in-law Dan and I] met with Dr. Bayer on Monday, 2/8 PM for what will become a weekly blood draw & observation. While he was heartened to hear Cathy state her current intention to fight on, he did tell us some new and difficult things:
- He described Cathy's "state" as catabolic. While I can't describe that well enough or thorough enough, suffice it to say it is daunting.
- He mentioned that Cathy's bilirubin needs to get down to no higher than 2 to enable her to get on the PARP inhibitor study.
- He told us that the ascitic fluid in her abdomen is rich in protein. While it is good to remove the fluid such that cancer is not bathing in / fed by it and she experiences some relief from the swelling, it means that after a draining, more fluid is produced which continues to deplete her body of the protein she needs. Also there is a concern not to eat too much protein to make up for the loss, as that could cause kidney failure - we walk a fine line.
Finally today we learned of her bilirubin levels from the 2/8 blood draw: 9.4
While this is discouraging, both Dr Bayer and Conzen [U of C breast cancer specialist] cautioned us that it will take 3-4 weeks before we'll know of the efficacy of the current chemo Cathy is on, Xeloda. I'll recap the bilirubin levels over the last month:
1/15 5.2
1/26 9.9
1/28 11.3 [drawn @ U of C]
1/30 7.9
2/8 9.4
I just wonder about the accuracy of 1/28 or 1/30 or the potential that the U of C lab equipment is calibrated to different standards than Delnor's eqpt.
The side effects of Xeloda are mounting up on Cathy, in addition to her pain & discomfort from the cancer and ascites, but she'll get a week's reprieve after her last dose on Friday evening. We continue to COVET your prayers for strength, comfort, healing and mercy from God our father.
Thursday, February 4, 2010
Update ...
It was a rough day for the most part for Cathy. Most who spent time with her over the last two days have expressed deep concern for my sweetheart.
I spent the late afternoon with Cathy taking her to Delnor Hospital to learn how to use the catheter to drain the fluid in her abdomen. 1650 ml of fluid was taken and I observed some relief and an uptick in Cathy's countenance.
Being "my evening off", I took the occasion to attend an "Adult Service Provider Resource Fair" [agencies offering services for individuals with disabilities]. I mention this for two reasons:
I spent the late afternoon with Cathy taking her to Delnor Hospital to learn how to use the catheter to drain the fluid in her abdomen. 1650 ml of fluid was taken and I observed some relief and an uptick in Cathy's countenance.
Being "my evening off", I took the occasion to attend an "Adult Service Provider Resource Fair" [agencies offering services for individuals with disabilities]. I mention this for two reasons:
- I bumped into a number of people who know my wife and daughter. In discussing Cathy's situation, I was encouraged and so proud of my wife AND daughter with the comments about the impression they both have made through the years - bright sunshine!
- I returned home to find my wife back in the throes of her familiar and increasing pain
Thankfully, Cathy is able to sleep fairly well, thanks either to Advil or the prescribed Vicadin, and is doing so now. Thanks for your continued prayers, cards and acts of service, meals, etc.
Tuesday, February 2, 2010
Another intervention ...
The ascites was back in a big way on Sunday, within 24 hours of the "paracentesis ". Cathy had vowed she would not replay Saturday's intervention due to the pain - and SHE IS A TOUGH COOKIE!
This side affect of liver compromise will not go away with one draining of the peritoneal cavity, it is chronic unless and until liver function improves. The new chemo [Xeloda] Cathy is on has the potential of helping the liver to improve by destroying the cancerous breast cells that are now in her liver and allow the liver to replace those cancerous cells with healthy liver cells.
In order to "buy time" for Xeloda to provide this improvement [Dr. Bayer estimated 3-4 weeks], we needed a way to mitigate the agony she is experiencing with the significant abdominal distension - thus we had her abdomen "tapped" again today but with a PleurX catheter that will allow us to drain the fluid as often as daily.
Cathy is in extreme discomfort from the liver and ascites and experiences sharp pain whenever she moves quickly or in the wrong direction [which is just about any direction]. Chronic fatigue is a common side effect of ascites due to cancer so when in a comfortable position, she can rest well.
I am reminded how the young live as if immortal / invincible. At this time we are painfully aware of how fragile we are; given each heartbeat and breath by our omniscient and loving God. Please pray for Cathy's pain control, the efficacy of the catheter and chemo and grace & mercy from the Lord.
This side affect of liver compromise will not go away with one draining of the peritoneal cavity, it is chronic unless and until liver function improves. The new chemo [Xeloda] Cathy is on has the potential of helping the liver to improve by destroying the cancerous breast cells that are now in her liver and allow the liver to replace those cancerous cells with healthy liver cells.
In order to "buy time" for Xeloda to provide this improvement [Dr. Bayer estimated 3-4 weeks], we needed a way to mitigate the agony she is experiencing with the significant abdominal distension - thus we had her abdomen "tapped" again today but with a PleurX catheter that will allow us to drain the fluid as often as daily.
Cathy is in extreme discomfort from the liver and ascites and experiences sharp pain whenever she moves quickly or in the wrong direction [which is just about any direction]. Chronic fatigue is a common side effect of ascites due to cancer so when in a comfortable position, she can rest well.
I am reminded how the young live as if immortal / invincible. At this time we are painfully aware of how fragile we are; given each heartbeat and breath by our omniscient and loving God. Please pray for Cathy's pain control, the efficacy of the catheter and chemo and grace & mercy from the Lord.
Saturday, January 30, 2010
OUCH!
It's called "ascites" and it is the pooling of excess / fugitive fluid pooling in the abdominal cavity - and Cathy has developed it over the last two weeks. The 5-6 month "pregnancy" look is the result and Cathy could no longer tolerate the pain. Thus, we spent 7 hours of today in the ER at Delnor awaiting tests, results, and finally the "paracentesis" whereby the fluid was removed.
Cathy didn't sleep last night so when they finally gave Cathy some Dilaudid [pain killer], she rested deeply ... for ten minutes at a time as I had to "force" down the solution she needed to drink before another CT scan. That, in and of itself, was not easy as Cathy already was so swollen that she didn't have the room for more, and yucky at that, fluids in her abdomen.
The paracentesis / tummy tap was very painful even with local anesthetic as they poked a needle into Cathy's abdominal cavity. A lot of fluid was removed and she's a tired ragamuffin so I'm hoping sleep will breathe new life into her frame tomorrow.
Cathy didn't sleep last night so when they finally gave Cathy some Dilaudid [pain killer], she rested deeply ... for ten minutes at a time as I had to "force" down the solution she needed to drink before another CT scan. That, in and of itself, was not easy as Cathy already was so swollen that she didn't have the room for more, and yucky at that, fluids in her abdomen.
The paracentesis / tummy tap was very painful even with local anesthetic as they poked a needle into Cathy's abdominal cavity. A lot of fluid was removed and she's a tired ragamuffin so I'm hoping sleep will breathe new life into her frame tomorrow.
Thursday, January 28, 2010
If You Could See Her Now ...
Wow, what a difference a day can make when you have metastatic breast cancer in your liver! Cathy was awful on Wednesday and by the time we reached the U of C clinic today, she had double the energy and "voice".
We met with Dr. Suzanne Conzen and staff and were very pleased with her professionalism, candor and competency. Due to additional bleeding [cancer loves sources of blood], trauma, potential infection, and a firm belief that the underlying liver issue causing elevated enzymes is the cancer, Dr. Conzen thought it wiser NOT to biopsy the liver.
Since most chemotherapies are metabolized / processed IN the liver and Cathy's bilirubin is elevated to the point she can NOT receive most chemos, Dr. Conzen prescribed a much less toxic [to the hair, fingernails, etc] ORAL chemo [XELODA] that Cathy can self administer and is not processed in the liver. Additionally, there is strong evidence that this drug can be highly effective in helping to restore better liver function [proved by reduced bilirubin].
Like any drug, this one has potential side effects but a patient of Dr. Conzen's has been on this chemo for 40+ weeks and her bilirubin has fallen from 18 to ~1.5 [normal]. As usual, Cathy will follow the Drs. regimen and we will remain faithful and look forward to seeing what this treatment will yield. Praise God!
We met with Dr. Suzanne Conzen and staff and were very pleased with her professionalism, candor and competency. Due to additional bleeding [cancer loves sources of blood], trauma, potential infection, and a firm belief that the underlying liver issue causing elevated enzymes is the cancer, Dr. Conzen thought it wiser NOT to biopsy the liver.
Since most chemotherapies are metabolized / processed IN the liver and Cathy's bilirubin is elevated to the point she can NOT receive most chemos, Dr. Conzen prescribed a much less toxic [to the hair, fingernails, etc] ORAL chemo [XELODA] that Cathy can self administer and is not processed in the liver. Additionally, there is strong evidence that this drug can be highly effective in helping to restore better liver function [proved by reduced bilirubin].
Like any drug, this one has potential side effects but a patient of Dr. Conzen's has been on this chemo for 40+ weeks and her bilirubin has fallen from 18 to ~1.5 [normal]. As usual, Cathy will follow the Drs. regimen and we will remain faithful and look forward to seeing what this treatment will yield. Praise God!
Wednesday, January 27, 2010
In God's Hands
Today Cathy had her follow up appointments with the infectious disease Dr. [Lewis] and Dr. Bayer, and not a moment too soon. Cathy has been very fatigued, in increasing pain, itching from elevated Bilirubin and uncomfortable from distended abdomen - an "expert" in mothering, Carol Casey having given birth to 7 children, estimated Cathy's girth to resemble a 5-6 month pregnant women. While Cathy's vitals were all good / within range, her weight has increased around 11 # in the last 9 days. Cathy has also been concerned about increasing yellowing of her skin due to jaundice, and it was confirmed to her today as a result of yesterday's blood draw results - her bilirubin has increased from 6.2 on 1/18 to 9.9 as of 1/26.
The daily intravenous antibiotic Cathy has been administered for the last 9 days has proven, if anything, only to exacerbate her liver malfunction [or perhaps of no assistance at the very least]. Cathy's other elevated liver enzymes have not come down since her hospital stay so the antibiotic was discontinued.
Carol Casey was along for both appointments and like us, she was impressed with the candor, compassion and efficient manner in which Dr Bayer got things going. Two bits of good news came out of this meeting. Although he admitted the current regimen has proven unsuccessful, Cathy's WBC is up to 10 [WOW!] and he has moved Cathy along to the University of Chicago for them to conduct tests, evaluate Cathy, and potentially get her in the PARP Inhibitor phase III study.
We have a 4:00 appointment on 1/28 through which we hope and pray the U of C Drs. can biopsy Cathy's liver, drain excess fluid, and determine that she is a viable candidate for the study [the cancer in her liver is rather "diffuse" / integrated front portion of her liver and not an identifiable and measurable tumor].
I believe this is a "double blind" study [the Drs. don't know which patients are initially prescribed the PARP inhibitor] and the recipients of it are chosen by lottery [she has a 50% chance of receiving chemo with placebo or a 50% chance of getting chemo and PARP inhibitor].
Though much has to be done [and this might presume she is ABLE to get chemo at all in light of her elevated liver enzymes] we gratified to know she is being cared for and the Drs. are being proactive rather than having Cathy languish at home without being monitored. We're also praying that a biopsy of the liver might provide better direction for her care. Additionally, IF Cathy can receive chemo, even if she doesn't get the PARP inhibitor, at least she'll get more than she has received in the last three weeks because of low WBC or elevated liver enzymes.
Finally, Lord willing, if Cathy does get the PARP inhibitor, it has shown great promise in fighting triple negative breast cancer: http://www.wavy.com/dpp/news/health_news/health_wavy_norfolk_parpstudy_20090909
When we've been successful in distracting Cathy from her pain, we've seen glimpses of her trademark sense of humor and love of life and others. Please pray with us for compassionate and good doctors, test results that provide hopeful treatment, that Cathy would receive the PARP inhibitor and that we would remain in God's care and loving hands.
The daily intravenous antibiotic Cathy has been administered for the last 9 days has proven, if anything, only to exacerbate her liver malfunction [or perhaps of no assistance at the very least]. Cathy's other elevated liver enzymes have not come down since her hospital stay so the antibiotic was discontinued.
Carol Casey was along for both appointments and like us, she was impressed with the candor, compassion and efficient manner in which Dr Bayer got things going. Two bits of good news came out of this meeting. Although he admitted the current regimen has proven unsuccessful, Cathy's WBC is up to 10 [WOW!] and he has moved Cathy along to the University of Chicago for them to conduct tests, evaluate Cathy, and potentially get her in the PARP Inhibitor phase III study.
We have a 4:00 appointment on 1/28 through which we hope and pray the U of C Drs. can biopsy Cathy's liver, drain excess fluid, and determine that she is a viable candidate for the study [the cancer in her liver is rather "diffuse" / integrated front portion of her liver and not an identifiable and measurable tumor].
I believe this is a "double blind" study [the Drs. don't know which patients are initially prescribed the PARP inhibitor] and the recipients of it are chosen by lottery [she has a 50% chance of receiving chemo with placebo or a 50% chance of getting chemo and PARP inhibitor].
Though much has to be done [and this might presume she is ABLE to get chemo at all in light of her elevated liver enzymes] we gratified to know she is being cared for and the Drs. are being proactive rather than having Cathy languish at home without being monitored. We're also praying that a biopsy of the liver might provide better direction for her care. Additionally, IF Cathy can receive chemo, even if she doesn't get the PARP inhibitor, at least she'll get more than she has received in the last three weeks because of low WBC or elevated liver enzymes.
Finally, Lord willing, if Cathy does get the PARP inhibitor, it has shown great promise in fighting triple negative breast cancer: http://www.wavy.com/dpp/news/health_news/health_wavy_norfolk_parpstudy_20090909
When we've been successful in distracting Cathy from her pain, we've seen glimpses of her trademark sense of humor and love of life and others. Please pray with us for compassionate and good doctors, test results that provide hopeful treatment, that Cathy would receive the PARP inhibitor and that we would remain in God's care and loving hands.
Wednesday, January 20, 2010
The [Mother] Eagle Has Landed
Cathy was released from the hospital tonight. Although she screened negative for Hepatitis A, B or C from her 1/15/09 blood draw, the infectious disease doctor called in on Cathy's case seems to think the recent elevation of liver enzymes was due either to:
"Hepatitis" as a reaction to the medication designed to combat THRUSH, Flucazanole OR
Yeast / Candidiasis in her liver [thrush migrated there]
So, fun for us, we will be administering the same intravenous anti-fungal medication she has been receiving while in the hospital the last 2 or 3 days. Thankfully, our insurance provides for Home Health Care that will get us set up for it and instruct us how to do it.
Our "matriarch" is tired from inability to sleep in the hospital, dried out in her mouth / nose from the dry hospital air and now eating quite well again! Her liver enzymes are coming down, WBC is up and should continue to rise through lack of chemo the last two weeks and for the foreseeable future and platelets are well into normal range.
Another prayer concern is that Cathy will not get chemo until her liver enzymes are under control. This cancer has been aggressive and fast growing, we hope and pray that the cancer will be held in abeyance while her enzymes retreat.
"Hepatitis" as a reaction to the medication designed to combat THRUSH, Flucazanole OR
Yeast / Candidiasis in her liver [thrush migrated there]
So, fun for us, we will be administering the same intravenous anti-fungal medication she has been receiving while in the hospital the last 2 or 3 days. Thankfully, our insurance provides for Home Health Care that will get us set up for it and instruct us how to do it.
Our "matriarch" is tired from inability to sleep in the hospital, dried out in her mouth / nose from the dry hospital air and now eating quite well again! Her liver enzymes are coming down, WBC is up and should continue to rise through lack of chemo the last two weeks and for the foreseeable future and platelets are well into normal range.
Another prayer concern is that Cathy will not get chemo until her liver enzymes are under control. This cancer has been aggressive and fast growing, we hope and pray that the cancer will be held in abeyance while her enzymes retreat.
Monday, January 18, 2010
What a day - renewed hope!
With rising liver enzymes, jaundice and concerns of Hepatitis or liver failure [signs looked to the former, fears "imagined" the latter], today has been quite the rebuttal. And we praise God for answered prayers!!
The day started with another blood draw at the chemo station since Cathy's blood from Friday, 1/15 was still inadequate to allow for therapy. Results came back with a solid 3.6 well above the cautionary point and platelets exceeding 200 [160 being the low point of "normal].
The next stop was to meet with Dr. Bayer and get the full results from the liver enzyme and tests for hepatitis. Cathy was negative for hepatitis A, B or C and the cancer marker even ticked down slightly! However, many of her already significantly elevated liver enzymes more than doubled. The CT scan from 1/13 could reveal any clues, Cathy can't get MRI scans now, so Dr. Bayer had Cathy admitted to the hospital for more tests and to be seen by a gastroenterologist and infectious disease doctor. The concerns being a possible blockage causing the increased enzymes. Chemo was not administered and won't be until the liver enzyme conundrum is deciphered.
The intake procedure, subsequent scans [EKG, X-ray and ultrasound] and visits by doctors was done with remarkable precision and timeliness. Both doctors, as well as Dr. Bayer, suggested the Flucazanole for THRUSH may have contributed to these elevated enzymes and the ultrasound did not indicate any blockage. Additionally, blood drawn today showed one of the key enzymes even retreated between last Friday and today ... and Cathy took her last Flucazanole this morning! If subsequent tests on Tuesday, 1/19 show enzymes continuing in a decreasing fashion, Cathy will be released from the hospital and will not need and ERCP procedure to be done.
This sure looks like great news and should allow chemotherapy to resume sometime soon. HOWEVER, with weekly chemotherapies resuming, the concern is now focused on a way to keep Cathy's WBC from degrading to the point that she gets THRUSH again as the treatment [Flucazanole] may be as disquieting as the ailment!
For now, the patient is resting [as best possible] in the hospital and we'll fight tomorrow's battles with renewed optimism! Praise be to God for answers to many faithful prayers!!
The day started with another blood draw at the chemo station since Cathy's blood from Friday, 1/15 was still inadequate to allow for therapy. Results came back with a solid 3.6 well above the cautionary point and platelets exceeding 200 [160 being the low point of "normal].
The next stop was to meet with Dr. Bayer and get the full results from the liver enzyme and tests for hepatitis. Cathy was negative for hepatitis A, B or C and the cancer marker even ticked down slightly! However, many of her already significantly elevated liver enzymes more than doubled. The CT scan from 1/13 could reveal any clues, Cathy can't get MRI scans now, so Dr. Bayer had Cathy admitted to the hospital for more tests and to be seen by a gastroenterologist and infectious disease doctor. The concerns being a possible blockage causing the increased enzymes. Chemo was not administered and won't be until the liver enzyme conundrum is deciphered.
The intake procedure, subsequent scans [EKG, X-ray and ultrasound] and visits by doctors was done with remarkable precision and timeliness. Both doctors, as well as Dr. Bayer, suggested the Flucazanole for THRUSH may have contributed to these elevated enzymes and the ultrasound did not indicate any blockage. Additionally, blood drawn today showed one of the key enzymes even retreated between last Friday and today ... and Cathy took her last Flucazanole this morning! If subsequent tests on Tuesday, 1/19 show enzymes continuing in a decreasing fashion, Cathy will be released from the hospital and will not need and ERCP procedure to be done.
This sure looks like great news and should allow chemotherapy to resume sometime soon. HOWEVER, with weekly chemotherapies resuming, the concern is now focused on a way to keep Cathy's WBC from degrading to the point that she gets THRUSH again as the treatment [Flucazanole] may be as disquieting as the ailment!
For now, the patient is resting [as best possible] in the hospital and we'll fight tomorrow's battles with renewed optimism! Praise be to God for answers to many faithful prayers!!
Sunday, January 17, 2010
Long Overdue [2 of 2]
The events of this past week warrant a post all their own, so strap in! January 11 proved to be, almost on queue, another week without chemo [it seems the story is the same every third week]. Cathy's WBC was at 0.9 [again, normal is 4.1 - 10.9]. Additionally, Cathy experienced excruciating THRUSH in her throat again, almost immediately following the last dose of Flucazanole from her prior bout with THRUSH - but this is just one more result from such low WBC. Because the Dr and nurses all thought Cathy looked strong, and she is such a good patient and can rebound on her own, Dr. Bayer elected to avoid the cost [and PAIN] and forego the Neupogen shots.
Not knowing why he did this and [with the incorrect misunderstanding about previoius transfusions], I contacted the Dr. on Tuesday for clarification. I also mentioned that Cathy and I had compared the last three "liver panels" against the original blood draw from 9/14. While some of the key liver enzymes had come down slightly over the last 6 weeks or so, they were all SIGNIFICANTLY higher than those from 9/14 and one key measurement went up.
Dr. Bayer had been on some task that took him away from seeing patients for several weeks, so after we hung up he reviewed Cathy's liver measurements. He called me back within 2 hours on Tuesday to suggest a new CT scan ASAP and another blood draw on Friday, 1/15. En route to the CT scan on Wednesday evening, Cathy mentioned some new symptoms she had noticed that were abnormal. By Thursday when the Dr. called to inform us of the CT scan results [no new growths, but no reduction in the size of the tumor in her liver], Cathy also informed him of her jaundiced eyes and skin - signs of additional compromise in her liver.
Full results of Friday's blood draw should be known by our late AM chemo appt on 1/18. These last few days have been very difficult not knowing what else is wrong with Cathy's liver and if this will affect her ability to continue with chemo. Amidst all the fatigue [so UNlike Cathy], I did see some strength from her for a short period this afternoon and it gave me hope that we can still address these issues.
The goal is to get Cathy to the point that she can receive the "PARP inhibitor" that is in final testing now. The test is going so well that our Dr. is optimistic it may receive FDA approval by mid-summer '10. We have, to this point, opted against getting in the test as there's a 50% chance she would get the chemo and placebo instead of the chemo and PARP inhibitor and there are vastly different and apparent results that all can see, even though it is a double blind study. Please pray with us to this end. Thanks for caring, encouraging, helping and praying.
Not knowing why he did this and [with the incorrect misunderstanding about previoius transfusions], I contacted the Dr. on Tuesday for clarification. I also mentioned that Cathy and I had compared the last three "liver panels" against the original blood draw from 9/14. While some of the key liver enzymes had come down slightly over the last 6 weeks or so, they were all SIGNIFICANTLY higher than those from 9/14 and one key measurement went up.
Dr. Bayer had been on some task that took him away from seeing patients for several weeks, so after we hung up he reviewed Cathy's liver measurements. He called me back within 2 hours on Tuesday to suggest a new CT scan ASAP and another blood draw on Friday, 1/15. En route to the CT scan on Wednesday evening, Cathy mentioned some new symptoms she had noticed that were abnormal. By Thursday when the Dr. called to inform us of the CT scan results [no new growths, but no reduction in the size of the tumor in her liver], Cathy also informed him of her jaundiced eyes and skin - signs of additional compromise in her liver.
Full results of Friday's blood draw should be known by our late AM chemo appt on 1/18. These last few days have been very difficult not knowing what else is wrong with Cathy's liver and if this will affect her ability to continue with chemo. Amidst all the fatigue [so UNlike Cathy], I did see some strength from her for a short period this afternoon and it gave me hope that we can still address these issues.
The goal is to get Cathy to the point that she can receive the "PARP inhibitor" that is in final testing now. The test is going so well that our Dr. is optimistic it may receive FDA approval by mid-summer '10. We have, to this point, opted against getting in the test as there's a 50% chance she would get the chemo and placebo instead of the chemo and PARP inhibitor and there are vastly different and apparent results that all can see, even though it is a double blind study. Please pray with us to this end. Thanks for caring, encouraging, helping and praying.
Long Overdue [1 of 2]
For those who might still be following, I'm sorry for the delay in updating. Though our holidays were much more low key & "abbreviated", most of what was done was done by me so its been busy.
To update, Cathy received her chemo on 12/14, but again on 12/21 her White Blood Cell [WBC] count was too low to get chemo. During Cathy's original bout with cancer in fall of '08, Cathy received Neulasta to help her body create sufficient WBC to keep her on the schedule of chemo every other week - but using Neulasta does not allow for chemo on a weekly basis as Cathy is doing now. So on 12/21, with her WBC count at 1.1 ["normal range of 4.1 - 10.9], Dr. Bayer scheduled Cathy for daily Neupogen 12/21-12/23 . This stuff brings up the WBC but at the cost of flu-like symptoms and BONE PAIN. Tough trooper that she is, Cathy felt the pain the evening of 12/21. The evening of 12/22, however, was AGONY. Cathy lamented that she just couldn't do it again on 12/23. Although the "stand-in" Dr. ordered Cathy to have the shot, the nurses who know my wife's resilience insisted on taking blood labs first - praise God she was at 5.6, didn't need to get the shot, and had an extra day to recoup for Christmas.
We enjoyed time with family and friends for Christmas and the New Year. Cathy once again had consecutive chemo on 12/28 and 1/4 and we marched into the New Year. We hope your Christmas, like ours, was joyful and filled with the love of family and friends at the celebration of our Lord's marvelous birth.
To update, Cathy received her chemo on 12/14, but again on 12/21 her White Blood Cell [WBC] count was too low to get chemo. During Cathy's original bout with cancer in fall of '08, Cathy received Neulasta to help her body create sufficient WBC to keep her on the schedule of chemo every other week - but using Neulasta does not allow for chemo on a weekly basis as Cathy is doing now. So on 12/21, with her WBC count at 1.1 ["normal range of 4.1 - 10.9], Dr. Bayer scheduled Cathy for daily Neupogen 12/21-12/23 . This stuff brings up the WBC but at the cost of flu-like symptoms and BONE PAIN. Tough trooper that she is, Cathy felt the pain the evening of 12/21. The evening of 12/22, however, was AGONY. Cathy lamented that she just couldn't do it again on 12/23. Although the "stand-in" Dr. ordered Cathy to have the shot, the nurses who know my wife's resilience insisted on taking blood labs first - praise God she was at 5.6, didn't need to get the shot, and had an extra day to recoup for Christmas.
We enjoyed time with family and friends for Christmas and the New Year. Cathy once again had consecutive chemo on 12/28 and 1/4 and we marched into the New Year. We hope your Christmas, like ours, was joyful and filled with the love of family and friends at the celebration of our Lord's marvelous birth.
Monday, December 7, 2009
We'll take it !!
Cathy's pre-chemo labs came back on November 30th showing her blood too degenerated to allow for chemotherapy. The Dr. and staff didn't seem flustered as a result and suggested the extra week off may do her some good and allow her to gain strength and her blood to rebound sufficiently to receive her scheduled "nab paclitaxel + Avastin". Cathy did show a bit more energy and we fed her a fair amount of beef on Saturday and Sunday to help.
The "pinch hitter" [not our regular oncologist] made a comment to Cathy today to the effect of, "Well this is a happy story" with regards to Cathy's response to her chemo. She DID get her dual chemo today and evidently [we haven't seen them], her abnormally high liver markers are continuing to come down! The "exit strategy" / maintenance regimen has not been discussed with us [perhaps it's just way too premature], but today we are very heartened by Cathy's response and the medical community's view of her progress.
Cathy had declined the steroids administered prior to her chemo the last two treatments but today's nurse wasn't aware of this change. So before Cathy and her sister noticed, she had received nearly 1/2 of the steroid ... Cathy was full of life this evening! Getting sleep as a result is still yet to be determined. Cathy is SUCH A TROOPER. She is fighting so valiantly and we appear to be seeing results as a result of her spirit, the faithful prayer of so many, the Lord's favor and chemo sufficient for the task. Thanks for your loving support and prayers.
The "pinch hitter" [not our regular oncologist] made a comment to Cathy today to the effect of, "Well this is a happy story" with regards to Cathy's response to her chemo. She DID get her dual chemo today and evidently [we haven't seen them], her abnormally high liver markers are continuing to come down! The "exit strategy" / maintenance regimen has not been discussed with us [perhaps it's just way too premature], but today we are very heartened by Cathy's response and the medical community's view of her progress.
Cathy had declined the steroids administered prior to her chemo the last two treatments but today's nurse wasn't aware of this change. So before Cathy and her sister noticed, she had received nearly 1/2 of the steroid ... Cathy was full of life this evening! Getting sleep as a result is still yet to be determined. Cathy is SUCH A TROOPER. She is fighting so valiantly and we appear to be seeing results as a result of her spirit, the faithful prayer of so many, the Lord's favor and chemo sufficient for the task. Thanks for your loving support and prayers.
Saturday, November 28, 2009
Too much fun? Too much to eat?
Perhaps we overdid it taking Cathy to the Rockford area for Thanksgiving to be with her family. The food and warm fellowship were excellent as always and not something Cathy or the rest of our small family could stand to miss. But in light of how comprimised Cathy has felt since returning it sure makes me second guess staying too long or Cathy indulging too much [extra pressure on her liver causing extra pressure on her lungs]?
On Friday we finally reviewed her labs from Monday's chemo. They weren't good: platelets below 100 and other factors above or below norms. It caused me to do some more internet research about Triple Negative and I was smacked into reality at just how pernicious this cancer is. Stories of other triple negative breast cancer patients with similar stories to Cathy's: faithful, young, vibrant, healthy, active women inflicted with this insidious stuff. Please continue to pray for her strength, response to chemo, the doctor's wisdom, timely medical advances and God's overarching grace and mercy.
On Friday we finally reviewed her labs from Monday's chemo. They weren't good: platelets below 100 and other factors above or below norms. It caused me to do some more internet research about Triple Negative and I was smacked into reality at just how pernicious this cancer is. Stories of other triple negative breast cancer patients with similar stories to Cathy's: faithful, young, vibrant, healthy, active women inflicted with this insidious stuff. Please continue to pray for her strength, response to chemo, the doctor's wisdom, timely medical advances and God's overarching grace and mercy.
Sunday, November 22, 2009
WOW!
"WOW!!", Dr. Bayer exclaimed while feeling Cathy's abdomen during last Monday's chemo appointment. He followed that up by facetiously saying, "We don't even need to have a CT scan". Evidently the swelling in Cathy's liver has noticeably receded. Cathy then asked if she could have her chemo [got both the nab-paclitaxel and Avastin this time] sans the steroids. Dr. Bayer, knowing his model patient is tough, in tune with her body and capabilities, and able to take the "risk", agreed.
Since it had been 11 days since Cathy's last chemo and she felt strong, she skipped the steroids feeling they caused side effects worse than any perceived benefit, and she proved quite perceptive - she slept better after the chemo, exhibited none of the "shakes" she had after previous chemos and was unfazed by the chemo's nasty effects until about Wednesday afternoon.
Tonight Cathy felt she may have regressed a little bit but I think it's due to the increased activity she has exhibited over the last 3 days and the protracted time she has avoided the oxygen [generator or mobile backpack unit]. Cathy's voice is stronger, aforementioned energy and activity increased and resolve renewed. She ate quite well today, too!
Tomorrow brings another chemo [nab-paclitaxel only] and we hope the side effects will be minimized so Thanksgiving with family can be maximized, for we have MUCH to thank the Lord for. We wish you dear and faithful "followers" a blessed Thanksgiving as well and thank you for your prayers, cards, letters, phone calls and support in so many ways.
Since it had been 11 days since Cathy's last chemo and she felt strong, she skipped the steroids feeling they caused side effects worse than any perceived benefit, and she proved quite perceptive - she slept better after the chemo, exhibited none of the "shakes" she had after previous chemos and was unfazed by the chemo's nasty effects until about Wednesday afternoon.
Tonight Cathy felt she may have regressed a little bit but I think it's due to the increased activity she has exhibited over the last 3 days and the protracted time she has avoided the oxygen [generator or mobile backpack unit]. Cathy's voice is stronger, aforementioned energy and activity increased and resolve renewed. She ate quite well today, too!
Tomorrow brings another chemo [nab-paclitaxel only] and we hope the side effects will be minimized so Thanksgiving with family can be maximized, for we have MUCH to thank the Lord for. We wish you dear and faithful "followers" a blessed Thanksgiving as well and thank you for your prayers, cards, letters, phone calls and support in so many ways.
Sunday, November 8, 2009
Hark, is that light?
Well, Cathy reacts like anyone/most would when she gets chemo, but as she "digests" the nasty stuff and "emerges from the" she looks and acts much like the Cathy I know and love. Well, that may be stretching it with regards to the "looking" aspect [she still has oxygen support, is VERY thin and has lost her hair] but the sparkle is back in her eyes, her face shows little effects from the crud she's been through over the last few weeks, and her wit, charm and spunk are effervescent as ever. Her voice is much stronger as she's overcome the thrush and perhaps gained lung capacity as [we're hoping & praying] her liver swelling may be receding.
Couple the physical / relational improvement with platelets that continue their ascent to normalcy and liver enzymes that have begun to fall and optimism has returned to our home. It's all anecdotal for now as we'll not know anything conclusive until sometime in early December when Cathy will get another CT scan, but it sure seems we're moving in the right direction.
We praise God for Cathy's apparent improvement and face each day with renewed optimism.
Couple the physical / relational improvement with platelets that continue their ascent to normalcy and liver enzymes that have begun to fall and optimism has returned to our home. It's all anecdotal for now as we'll not know anything conclusive until sometime in early December when Cathy will get another CT scan, but it sure seems we're moving in the right direction.
We praise God for Cathy's apparent improvement and face each day with renewed optimism.
Wednesday, October 28, 2009
SO Cool, SO Sweet!
As the flu season gets underway and is heightened with added concerns due to H1N1, Dr. Bayer told us nearly two weeks ago that the swine flu would likely be deadly in Cathy’s immuno-suppressed state. Since Hope daily invades the germ-pool we know as High School and since her oral fixation makes her an even greater candidate to contract the nasty stuff, Cathy and I have debated getting the vaccination for Hope. She has the greatest likelihood in our family of getting the flu and would pose the greatest difficulty to care for and keep Cathy from contracting it
- past vaccinations have been difficult for Hope and other Angelman Syndrome patients. Do we gamble with possible complications from the vaccination or near certain extreme difficulties in the event Hope contracts the H1N1 flu?
- we had not considered getting the vaccination for Cathy as we were under the impression she couldn't get it in her compromised state
Well, on 10/22 it turns out Dr. Bayer informed Cathy that she CAN and should get the vaccine. We also decided Hope would be better served by getting the vaccine than the possible consequences if she didn't.
This is where it gets REAL SWEET AND REAL COOL:
- As difficult as it is to secure the vaccine with demand outstripping supply, Carol Casey requested that Mrs. and Dr. Erickson seek to get two of the shots for my girls
- Dr. Erickson solicited the assistance of a Vice President of our local hospital to assist in the hunt.
- Cathy has a limited window between and before her weekly chemotherapies
- On Tuesday evening, 10/27, thanks to the assistance of these aforementioned saints, Dr. Erickson administered the shots in our home on the last day before Cathy would have to wait for at least 4 more days!
Sunday, October 25, 2009
Good News?
Rather than get chemo on Thursday, 10/15, we met with Dr. Bayer. They took blood and Dr. Bayer advised Cathy to eat a high protein diet. We left the office, Cathy "dined" on 1/2 of a beef sandwich from Panera and we ran a couple errands including a visit to Walmart - Cathy in tow in a wheelchair due to her compromised breathing. Upon returning home, the protein "kicked in" and we heard great news from her labs: overall her blood looked great since the infusion on 10/13 and her platelets were up to 101.
Cathy inadvertently received no additional oxygen from the generator for nearly 24 hours from 10/15 PM until early evening 10/16 [I cross-threaded the threads in the "bubble humidifier" lid and air escaped as a result]. When the cause was discovered on Friday night, Cathy opted to go without the added oxygen and breathe solely on her own and did remarkably well thru Monday, 10/19. Her oxygen saturation during the labs was ~97%, a full 1% higher than her sister's for which Cathy chided Kay! Monday was a good day but Tuesday AM the sharp pain in Cathy's side returned and the need for oxygen was once again self-evident.
Thru this last week leading up to chemo on 10/22, Cathy remarked that since she still felt so bad, she lamented not getting chemo on 10/15. Well, it's still early in the marathon, but between labs on Monday, 10/19, and additional labs pre-chemo on Thursday, it turns out her blood looks great AND it appears her elevated liver enzymes have dropped a bit! Praise God !!
Chemo is nasty and Cathy feels fatigued and nauseous but due to the steroids they give during administration, she has a pretty good 24-30 hour period before the wheels fall off. After dinner on Friday, 10/23, Megan Maertens dropped over bearing home-made scones. Upon handing me the plate of delectable scones, Megan and her boyfriend, Nate, sat on the floor at the foot of the recliner ["Cathy's Throne"] and each massaged a foot of Cathy's for ~2 hours, moved to her hands and Megan finished up with a shoulder and scalp massage. Coupled with the "healing touch" and sweet discourse we enjoyed for nearly four hours, Cathy appeared to grow stronger through the night and remained so until nearly noon on Saturday - a full 16 hours of "health" longer than her past experiences.
Today has been rough, her liver continues to be painful and she produces a fair amount of phlegm [by-product of the chemo?] Although the liver has been bothering her for nearly 10 weeks now, it seems she is more aware of a different pain after chemo - we hope and continue to believe that it is the cleansing effect of the "nan-paclitaxel" destroying the tumor.
I hope to post some pictures on the blog, once again, if I can only figure it out without wasting precious hours. It's been a long weekend and I'm going to join Cathy in slumber now. Thanks for checking in and keeping Cathy in your prayers.
Cathy inadvertently received no additional oxygen from the generator for nearly 24 hours from 10/15 PM until early evening 10/16 [I cross-threaded the threads in the "bubble humidifier" lid and air escaped as a result]. When the cause was discovered on Friday night, Cathy opted to go without the added oxygen and breathe solely on her own and did remarkably well thru Monday, 10/19. Her oxygen saturation during the labs was ~97%, a full 1% higher than her sister's for which Cathy chided Kay! Monday was a good day but Tuesday AM the sharp pain in Cathy's side returned and the need for oxygen was once again self-evident.
Thru this last week leading up to chemo on 10/22, Cathy remarked that since she still felt so bad, she lamented not getting chemo on 10/15. Well, it's still early in the marathon, but between labs on Monday, 10/19, and additional labs pre-chemo on Thursday, it turns out her blood looks great AND it appears her elevated liver enzymes have dropped a bit! Praise God !!
Chemo is nasty and Cathy feels fatigued and nauseous but due to the steroids they give during administration, she has a pretty good 24-30 hour period before the wheels fall off. After dinner on Friday, 10/23, Megan Maertens dropped over bearing home-made scones. Upon handing me the plate of delectable scones, Megan and her boyfriend, Nate, sat on the floor at the foot of the recliner ["Cathy's Throne"] and each massaged a foot of Cathy's for ~2 hours, moved to her hands and Megan finished up with a shoulder and scalp massage. Coupled with the "healing touch" and sweet discourse we enjoyed for nearly four hours, Cathy appeared to grow stronger through the night and remained so until nearly noon on Saturday - a full 16 hours of "health" longer than her past experiences.
Today has been rough, her liver continues to be painful and she produces a fair amount of phlegm [by-product of the chemo?] Although the liver has been bothering her for nearly 10 weeks now, it seems she is more aware of a different pain after chemo - we hope and continue to believe that it is the cleansing effect of the "nan-paclitaxel" destroying the tumor.
I hope to post some pictures on the blog, once again, if I can only figure it out without wasting precious hours. It's been a long weekend and I'm going to join Cathy in slumber now. Thanks for checking in and keeping Cathy in your prayers.
Wednesday, October 14, 2009
Catching Up
Quick updates since it's been so long since we weighed in:
Saturday, 10/3: turns out Cathy's platelets were at 35 [normal range 160-400] and in pain. Quite a reversal from Friday.
Sunday, 10/4: platelets fell to 21 and she got a platelet infusion late that night
Monday, 10/5: platelets at 58 and Cathy dismissed late afternoon with oxygen support. Also had bladder infection [a first]. Wall unit O generator to arrive 6-7 PM. Portable cylinder ran out of O ~9:00 and plug in unit arrived about 10:00 FINALLY
Tuesday, 10/6: Cathy is thin in hands, arms, shoulders and ribs but abnormally bloated in her abdomen, hips, bottom, legs and feet. In addition to inflamation in her liver, additional inches causing significant discomfort.
Wednesday, 10/7: labs revealed platelets fell to 40 and liver enzymes unchanged [at least no increase]. Decent evening but severe pain late in her left kidney
Thursday, 10/8: Cathy got chemo [nan-paclitaxel] with steroids and came home full of energy.
Friday, 10/9: PM the wheels fell off. Called me at the office to say her liver hurt. Different than general / continued pain? We surmised that perhaps the targeted chemo was taking effect!
Weekend was quiet as Cathy felt awful and throat became sore
Monday, 10/12: labs moved to Monday. No news on liver enzymes but orders for blood transfusion [2 units] for Tuesday.
Tuesday, 10/13: Outpatient infusion took 7 hours for two units of blood - all day! Nurses determined throat / mouth sores as THRUSH - she didn't need that!
Wednesday, 10/14: White blood cell count reported too low that Cathy will NOT get chemo on Thursday. Sweet evening, however, in that a HOST of High School youth group ["HYACKS"] students and adult leaders came to pray collectively outside our home for Cathy and our family. A concert of prayer which we appreciate so.
My prayer request specifically for Cathy's health is divided into short and long term. Long term that the chemo would have full effect and remove the tumors and full remission would result. Short term is for Cathy to avoid infection of any flu or other colds and to be able to bear up with all the pain of cancer and side effects of chemo.
Saturday, 10/3: turns out Cathy's platelets were at 35 [normal range 160-400] and in pain. Quite a reversal from Friday.
Sunday, 10/4: platelets fell to 21 and she got a platelet infusion late that night
Monday, 10/5: platelets at 58 and Cathy dismissed late afternoon with oxygen support. Also had bladder infection [a first]. Wall unit O generator to arrive 6-7 PM. Portable cylinder ran out of O ~9:00 and plug in unit arrived about 10:00 FINALLY
Tuesday, 10/6: Cathy is thin in hands, arms, shoulders and ribs but abnormally bloated in her abdomen, hips, bottom, legs and feet. In addition to inflamation in her liver, additional inches causing significant discomfort.
Wednesday, 10/7: labs revealed platelets fell to 40 and liver enzymes unchanged [at least no increase]. Decent evening but severe pain late in her left kidney
Thursday, 10/8: Cathy got chemo [nan-paclitaxel] with steroids and came home full of energy.
Friday, 10/9: PM the wheels fell off. Called me at the office to say her liver hurt. Different than general / continued pain? We surmised that perhaps the targeted chemo was taking effect!
Weekend was quiet as Cathy felt awful and throat became sore
Monday, 10/12: labs moved to Monday. No news on liver enzymes but orders for blood transfusion [2 units] for Tuesday.
Tuesday, 10/13: Outpatient infusion took 7 hours for two units of blood - all day! Nurses determined throat / mouth sores as THRUSH - she didn't need that!
Wednesday, 10/14: White blood cell count reported too low that Cathy will NOT get chemo on Thursday. Sweet evening, however, in that a HOST of High School youth group ["HYACKS"] students and adult leaders came to pray collectively outside our home for Cathy and our family. A concert of prayer which we appreciate so.
My prayer request specifically for Cathy's health is divided into short and long term. Long term that the chemo would have full effect and remove the tumors and full remission would result. Short term is for Cathy to avoid infection of any flu or other colds and to be able to bear up with all the pain of cancer and side effects of chemo.
Saturday, October 3, 2009
Welcome ERABS
Fellow classmates of '79. As Cathy's husband I want to thank you for checking her blog & your concern for her well being. You can bet both she and I would have much rather been catching up with you on this reunion night than where we are now. Cathy is /no, WAS resting comfortably as I write this. I'll not go into much of her current dilemma [you can read about it here] or our last 10 years since the 20th, but I can tell you she is, as she was in High School, well loved, interested in other's well being, energetic, fun and fun-loving. She has grown, however, since High School into a wise, loving and discerning mother, church youth leader, employee, friend and wife [we celebrated our 28th anniversary on August 1st]. Just a little context, as you read: our son Wesley is 22 and attempting to get into the Air Force to pursue special forces in S.E.R.E., our 19 year old daughter, Hope, is handicapped with a genetic defect called Angelman Syndrome and is our constant and sweet companion. Please join our little "community" in praying for Cathy's full recovery and Lisa or Erin can let you know how to get in touch with Cathy during/after her recuperation.
The Latest
An update from Thursday's last post will, again, be mixed with good and bad. Wesley and Hope accompanied me to visit Cathy on Thursday evening and Leanne joined us a little later. We were all encouraged at Cathy's coherence and improvement resulting from some pain medications and the IVIG drip.
Friday AM I was back at the hospital in the morning for Dr. Bayer's rounds. Cathy had received her chemo overnight and was responding very well. While I was at work she had some visitors and appeared to be unfazed. Friday night upon my return with Hope, we were amazed at what we saw. Leanne had come as well and remarked that Cathy looked about 80% of her normal self and I couldn't disagree. Her pain meds were changed slightly and she received her 2nd dose of IVIG.
Saturday, however, was an awful "relapse" into the pain and weakness we had been seeing prior to arriving at the hospital. Before I made it to the hospital in the morning, Cathy called to inform me of her sleepless and uncomfortable night. Her normally concave abdomen has been slightly distended due to the swelling of her liver from the cancer. Cathy is much too private and proper for me to write this but both chemo and the pain meds are each sufficient alone to cause constipation ... she had BOTH and is quite stopped up as a result, adding insult to injury in her abdomen.
The Dr. had indicated that [especially when the tumor has not been surgically removed prior to?] her chemo would present her with good and bad days. The effects of the meds on the tumor themselves might release toxins[?] and make her sick, too. In her experience, if this is the case, it seems a bit odd since she had such a great day immediately following the chemo and this day we'd all like to forget today!
While I took Hope home in the late afternoon for a change of scenery for her and dinner at home, Leanne remained with Cathy. Leanne called from the hospital and offered to care for Hope at home while I returned to visit Cathy. Upon her arrival, Leanne was visibly shaken and crying profusely by Cathy's condition. It's now 9:30 PM and Cathy is miserable with minuscule relief. Now her third night in the hospital ... we'll need to see remarkable improvement for her to come home sometime on Sunday, but not until we know she is good AND stable.
Friday AM I was back at the hospital in the morning for Dr. Bayer's rounds. Cathy had received her chemo overnight and was responding very well. While I was at work she had some visitors and appeared to be unfazed. Friday night upon my return with Hope, we were amazed at what we saw. Leanne had come as well and remarked that Cathy looked about 80% of her normal self and I couldn't disagree. Her pain meds were changed slightly and she received her 2nd dose of IVIG.
Saturday, however, was an awful "relapse" into the pain and weakness we had been seeing prior to arriving at the hospital. Before I made it to the hospital in the morning, Cathy called to inform me of her sleepless and uncomfortable night. Her normally concave abdomen has been slightly distended due to the swelling of her liver from the cancer. Cathy is much too private and proper for me to write this but both chemo and the pain meds are each sufficient alone to cause constipation ... she had BOTH and is quite stopped up as a result, adding insult to injury in her abdomen.
The Dr. had indicated that [especially when the tumor has not been surgically removed prior to?] her chemo would present her with good and bad days. The effects of the meds on the tumor themselves might release toxins[?] and make her sick, too. In her experience, if this is the case, it seems a bit odd since she had such a great day immediately following the chemo and this day we'd all like to forget today!
While I took Hope home in the late afternoon for a change of scenery for her and dinner at home, Leanne remained with Cathy. Leanne called from the hospital and offered to care for Hope at home while I returned to visit Cathy. Upon her arrival, Leanne was visibly shaken and crying profusely by Cathy's condition. It's now 9:30 PM and Cathy is miserable with minuscule relief. Now her third night in the hospital ... we'll need to see remarkable improvement for her to come home sometime on Sunday, but not until we know she is good AND stable.
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