Friday, April 10, 2015

One Year...

I got a note today from one of Lisa's life-long friends, Pam: "I want you to know that I'm thinking about you and Lisa's mom today as Lisa celebrates her first year in heaven."  What a beautiful way of looking at it...

Here's an encouraging note that I got today from one of my friends, Mike: "I hope that during this emotional time of year, you are strengthened by remembering Lisa's great personality, her daily impact on friends and family, along with the nurturing effect she had on people's futures.  She was one of the nicest people I have had the pleasure of knowing, and seeing her positive attitude taught me how to be a better person to others." 

Thursday, April 10, 2014

The Fight Is Over

After a fight lasting more than 3 years, Lisa's body was overwhelmed by the cancer and she passed away this afternoon.  We had wanted her to be able to be at home, but she was in such pain overnight and this morning beyond anything we could do with oral pain medications that we made the decision to get her by ambulance first thing this morning to the local hospital that also hosts the cancer treatment center.  It was the best decision for Lisa, and after the first couple of hours they were finally able to control her pain and distress so that she went through her final hours peacefully unconscious.  And now she is truly at peace, and with Jesus.

The memorial service will be held in Lisa's hometown of Elizabethtown Kentucky on Saturday April 19.  


Click Here for Lisa's obituary

I'll add more at some later time when I'm up to it, but I wanted to share this with friends and family that I didn't reach from the hospital.


Although the memorial service will be in Kentucky, some of our wonderful neighbors have gotten together and are having a memorial stone placed in Huntsville's Botanical Gardens' "Garden of Hope" as an additional local way to honor Lisa's memory.  For any of our friends and family that would like to be a part of it, please contact Melody Herrmann by phone at 256.881.1090 or by email at


4/14 -- Lisa didn't just have workmates through her job with the Red Cross, but many became her friends.  One of those sent this to other co-workers, and it eventually made its way to me.  I was so touched, that I wanted to share it with Lisa's friends and family who are outside of the Red Cross network.

My “Hero”….Lisa
  • Definition of hero - remarkably BRAVE person: someone who commits an act of remarkable bravery or who has shown an admirable quality such as great COURAGE or STRENGTH of character;  somebody ADMIRED for outstanding qualities or achievements.

Lisa saved THOUSANDS of lives during her career with the Red Cross. She collected over 190,000 units of blood, and with each collection possibly saving up to three lives, it is estimated that Lisa directly impacted the lives of hundreds of thousands of people -- potentially over a half a million people -- she likely never met.

She was committed to excellence and had a distinguished record of performance.  If you knew Lisa, you know her commitment to the Red Cross endured to her final moments here. She was an incredibly wonderful human being, offering love and inspiration to us all.

Her grace has forever changed me. It has changed the Red Cross organization in Alabama. My heart is very heavy today, but know she is watching over us.

— Kimree


Sun April 27 -- I was talking with Lisa's mom on the phone today, and during some reminiscing, she mentioned that when Lisa went to the hospital that last day, Lisa was planning to come home after getting the help she needed.  I hadn't thought about that, but it's very true, and it was the same in our minds until we were told several hours later that Lisa wasn't expected to live past the day.  Lisa's mom followed in her car, but I rode in the front passenger seat of the ambulance (unlike tv and movies, they don't let a family member ride in the back with the patient), and after we got to the hospital and I went around to the back of the vehicle as they were taking her out, Lisa was still feeling ok from the effects of all the narcotics and steroids I had given her... when she saw me, she smiled and waved.

It wasn't until they rolled her into the hospital room and transferred her into the bed there that she had trouble getting comfortable.  The pain started coming back about 10 minutes later, and it came on quickly and the nursing staff couldn't get it under control.  They applied more Fentanyl patches, a Scopolamine patch, gave morphine and steroid shots, and started a morphine drip.  It helped some, but not enough.  Ninety minutes at the hospital and Lisa was semi-conscious but clearly still in pain and distress.  I urged the charge nurse to give Lisa more, and faster -- whatever it would take.  She explained that their protocol was to increase the doses only every 15-20 minutes and only by a certain amount at a time, and that's all they could do until it was finally enough, even though their goal was to make Lisa "comfortable".  I had the direct number for the oncologist, and texted him that it wasn't working to control Lisa's pain, and if he was able to override the standard protocol, to please please help her.  Within 2 minutes the nurse came back in and said she had new doctor's orders, and within another 2 minutes Lisa was unconscious and appeared to be peaceful.  Her final four hours were like that... like she was sleeping.  Her breathing eventually got slower, but she never had to struggle for air.  Her breaths just got farther apart, and more shallow, until they stopped.  She had suffered a lot the previous few days, but she did not suffer in her final hours.  She passed with people around her that loved her, holding her hands.

I am writing this through tears, and despite her peaceful passing, it is a painful memory.

I miss her more than I can express.


Sat May 3rd -- Lisa kept a basket in the kitchen full of recent cards she'd gotten from friends and family as she went through the struggles of her illness.   What I didn't know until today was that she also kept two boxes in her closet with similar cards going back to when she was first diagnosed.  I believe she must have kept every single card from all the people telling her that they loved her and cared about her and were praying for her to beat the cancer.  I *know* that these cards were very important to her -- especially as Lisa became more home-bound, the daily mail was something she looked forward to, because there was almost always at least one card or note from someone, and it was a great encouragement to her.  For those of you who regularly -- or even occasionally -- sent cards and notes to Lisa, I would like to express my deepest, heartfelt thanks.  You can't fully appreciate how much you ministered to her, and how much that means to me.  (note added Sunday June 1st -- Make that three boxes of "get well/thinking of you" cards in the back of her closet... she appreciated and loved you all.)


Saturday June 21 --

I would rather have had one breath of her hair, one kiss of her mouth, one touch of her hand, than eternity without it. One.   
                                            (-- Seth, from City of Angels)

Wednesday, April 9, 2014

I've spent 15 minutes composing and erasing different versions of descriptions of what's going on.  I wanted to give our friends and family a good, thorough understanding of what is happening with Lisa and what we're dealing with, but I can't find a comfortable way to write it.

It's been a rough day.  Lisa isn't doing very well overall, but we're grateful that she's not in pain.  She's still with us.  There's a sign at the radiation center that says, "Never, never, NEVER GIVE UP."  As Lisa's mom commented to another person at the center today, that's definitely been Lisa.  But tonight, Lisa said she's "ready" for it to be over.

Tuesday, April 8, 2014

A very bad night... Lisa woke up twice with bad coughing to where it sounded like she couldn't catch her breath.  She actually doesn't have a problem with air supply -- she has one lung that is almost tumor free -- but the diseased lung is mostly closed off and the body's response is to try to cough out whatever is blocking it, even if it can't.  Additionally, there's not just cancer there, but mucus/phlegm in which bacteria can fester is also a problem in that lung.  Lisa also woke up several times feeling "distressed", and whether that is associated with her medicines or with her worsening general weakness, or a combination of them, is difficult to determine.

However, the swelling of her limbs continues to get a little better each day, and her pain is able to be kept controlled with a much lower dose of morphine than it required last week.

Monday, April 7, 2014

We're starting to see some improvement in the swelling of Lisa's right arm over the weekend.  This is encouraging -- it is hopefully an indication that the radiation is already causing the targeted tumor to shrink, and that's after only 3 of 10 treatments.  Today was #4, so we're hopeful this trend will continue.  Meanwhile, though, Lisa seems to get slightly weaker each day and her coughing spells are getting worse, but she's holding up reasonably well through it all.

Lisa had a blood panel done today, and most of the results, though out of 'normal' range, are 'reasonable' for her condition, with one exception:  her platelet count was very low, though not dangerous.  She's being taken off the daily blood thinner injections (the probable cause), and being put on a different tablet blood thinner that doesn't whack platelet count.  She'll have her blood checked again on Thursday, and if platelet count hasn't started to rebound, she will get a blood infusion on Friday.

Saturday, April 5, 2014

We increased the dose on the Fentanyl/Morphine patches, and Lisa's pain stays under pretty good control most of the time and she's able to go for longer periods between needing to take morphine orally.  However, other issues remain, and last night Lisa had a bad coughing spell around 3am and it took until 5am to get things back under control where she could lay back in bed.

As Lisa's weakness continues, she's often needing help to get up from a recliner or other seated positions -- but she wraps her arms around my neck and I'm able to help her up to her feet, and once she's up, she can use her walker.  I've installed grab rails in the bathroom, and we'll be looking at other things we can do to help her stay as ambulatory as possible.  Most of the time, however, she needs to be in bed or in a recliner so that she can keep her legs and her right arm elevated to keep the swelling under control.  If the radiation treatment works as hoped, the tumors specifically constricting the blood return vessels around her heart should start dying off in 2 to 3 weeks, and if so, Lisa's swelling and associated mobility should noticeably improve.

Thursday, April 3, 2014

The radiation treatment went quicker today, since it was just the actual treatment since all the setup definitions were accomplished yesterday.  We also made sure Lisa had plenty of pain medication "on board" before we got there so that she could more easily get through the uncomfortable positioning.

Lisa's had another day of continued weakness.  We had a wheelchair ramp installed on the front porch to make getting her in and out of the house for the trip to and from the treatment center easier. 

Wednesday, April 2, 2014

Lisa has had a lot more pain last night and all day today, so the oncologist said to raise the steroid dose back up to the previous level.  Meanwhile, she's had to be on a lot more morphine.

Lisa had her first radiation treatment, and she'll have them every weekday for at least nine more, possibly up to fourteen more depending on results.  She has to be in an uncomfortable (painful) position on the glass table during the actual radiation treatment, but thankfully it only lasts around 10 minutes.

In addition to the pain, Lisa has had more weakness today, though it's difficult to know if it's an increase in general weakness, or a result of the medicine mix.  She actually had her legs go out from under her this evening and ended up on the floor in the kitchen (she wasn't hurt), and she couldn't support herself using her walker.  Her mom and I got her up into a wheelchair, and 30 minutes later Lisa was pretty much back to her previous strength level and is able to lift herself up and use the walker again.  But because it can be unpredictable, one of us stays with Lisa -- or in an adjacent room -- most all the time.

Tuesday, April 1, 2014

We met with the radiation oncologist today, and there's good news:  he is able to radiate both the superior vena cava and inferior vena cava at an angle that should cause no side effects other than the typical tender skin (like sunburn) that goes with treatments.  This means that if the treatment is sucessful as expected, it will result in reduced swelling in Lisa's arm and both legs, which are her main source of pain, discomfort and difficulty walking.  Lisa would go to the treatment center each weekday morning for 10 to 15 treatments total, depending on how she's doing.

Lisa's not feeling well, so we'll go to the cancer center again this afternoon for her usual pain and steroid meds via infusion.

Monday, March 31, 2014

Today's meeting with the primary oncologist resulted in some rebalancing of Lisa's medicines.  He lowered her steroid dose to see if it is contributing to her swelling; he increased her morphine pain patch dose to raise her ongoing pain treatment baseline so that she hopefully won't need to take pain pills as often; he eliminated the diuretic and its associated requirement for potassium booster to see if her swelling stays stable without it; and her beta blocker has been cut in half to slightly raise her blood pressure to see if it helps her energy level.

Lisa is showing more weakness, and had more trouble today getting in and out of the wheelchair, moving from one chair to another, or even pushing herself back in a recliner.  Tomorrow morning we will meet with the radiation oncologist to get the results of his study and find out if he is able to provide some radiation treatment to the tumors around Lisa's heart that are the primary cause of the swelling of her right arm and both legs. 

Saturday, March 29, 2014

Lisa's med mix is still doing the job, and she actually seems to be doing ok on a slightly lower pain dosage today.

Thursday, March 27, 2014

We have continued to go to the cancer center each day for Lisa's infusion treatments of pain meds and steroids to supplement what she takes around the clock in pill or patch form, and she's doing pretty well with those.  Although we've talked with Hospice by phone regarding home-based comfort care, we are finally meeting with them this morning so that we better understand what they have to offer and how it works.  This is just one of 16 different Hospice organizations licensed to provide service in our area, so if we don't feel comfortable with this one, we will meet with others.

Yesterday, Lisa also had a CT scan by the radiation oncologist's office, designed to help them decide if, where, and how much radiation they can give to the tumor that's compressing the superior vena cava that's causing Lisa's right arm swelling.  Her hand is so swollen that she can not even hold a pencil.

Tuesday, March 25, 2014

The current mix of meds is continuing to keep Lisa's pain under control.  Tomorrow morning Lisa will have her pre-radiation CT scan that will be used for their planning and physics calculations to determine if it is possible to 'nuke' the tumor in the area of her superior vena cava without causing her other discomfort and side effects.  As the radiation oncologist told us on the phone over the weekend, it's all about making Lisa feel better at this point -- they don't want to do anything that would make her feel worse even in the short term.  It will be Monday before we meet with the radiation oncologist to hear the conclusion and potentially start daily radiation treatment.

Saturday, March 22, 2014

The current mix of meds  is doing the job of keeping Lisa's pain under control without making her groggy.  However, we are now in the weekend and she can't get the infusions of morphine, zophran, decadron and saline that she got every day this week at the cancer center, so we have tablet equivalents to use.  We have some flexibility in the dosing and need to figure out what's going to work best.

Regarding my comments yesterday about Hospice care, I found out that there are 16 different Hospice providers licensed in our area, so hopefully we can find a suitable one that doesn't have the restriction.

This afternoon we were able to talk with the Radiation Oncologist that worked with Lisa previously, and he is "cautiously optimistic" that radiation could be used to provide some short-term relief and improved quality-of-life by reducing the tumor constricting the vessels around the upper part of the heart.  Lisa will be going for additional scans this coming week so that they can evaluate that further, looking at potential treatment starting the week following.

Thursday, March 20, 2014

I took Lisa to the cancer center again for the palliative meds, but they didn't initially help her, even though they have for the last three days.  Today they gradually bumped up the morphine until it was triple the previous days' doses, and she was still in pain.  They then gave additional steroids until it was double the previous days' doses, and that did provide some relief.  The oncologist came into the treatment room (which he doesn't very often) to see Lisa multiple times during today's infusions, since she was having so much trouble.  The increase in pain is likely due to the tumor growing past some size factor where it exerts more pressure on the neighboring structures, causing more pain, which is one of the reasons that the steroids help so much.  After Lisa's pain level was finally brought down, her heart rate rose to over 170 beats per minute and stayed there for close to two hours.  They wanted to hospitalize her, but after conferring with a cardiologist, they decided that since Lisa's blood pressure and oxygenation were ok, that we could go home but monitor her closely and give her a beta-blocker at bed time and again first thing in the morning before we go in for the appointment we already have scheduled at the cardiologist.  After we got home, by around 6pm Lisa's heart rate was back down in the 120s (normal for her in her condition).

The swelling of Lisa's arm continues to get worse from the upper vessels that the tumors are constricting around her heart, and Lisa's legs and feet are swelling from the constricted lower vessels, though they don't cause her as much discomfort as her arm and hand do.

The oncologist has given us some different pain medication, including a patch which provides a more consistent baseline of pain relief so there are less major swings, and prescribed a stronger at-home pain medicine to take care of those times when the pain increases above the baseline.

We also got a surprise that although the doctor was suggesting and authorizing Hospice Care ("comfort care"), the Hospice organization said that Lisa is not eligible as long as she continues to go to the cancer center for comfort care, even though she has a critical illness and is too weak to get any actual cancer/chemo treatment.  We'll be following up so that we have a better understanding of it all.

Wednesday, March 19, 2014

Around 2am last night Lisa had an episode where her heart rate got up to over 160 bpm and stayed high for around an hour before coming down on its own.  She's going to see a cardiologist on Friday morning before she goes in for her daily infusion of fluids, steroids, anti-nausea and pain meds.

Tuesday, March 18, 2014

Lisa was doing very well today right up to about an hour before she had her afternoon palliative infusion at the cancer center of the same meds and fluids as yesterday , and was feeling much better again by the time we left there.  However, her swelling continues to get slightly worse each day.  We had a consult with a heart surgeon today to get a second opinion about whether surgical intervention (such as a stent) is possible/practical to improve the flow in and out of the heart, and while he doesn't think so from his perspective, he is going to further consult with an associate that is a vascular surgeon.

We're hoping to get home-based care initiated within the next several days so that Lisa isn't dependent on going to the cancer center each afternoon, and so that there is also help available on the weekends if needed without having to make a trip to the E.R.

Monday, March 17, 2014

We were able to get in to see the oncologist this morning.  He decided that Lisa can't tolerate chemo in her current condition -- that it would make her worse at this point.  At least for now, treatment becomes "comfort care".  Lisa was given an infusion of fluids, anti-emetic (anti-nausea), steroids, and her first experience with morphine.  She was feeling substantially better when we left the treatment center, and she was able to hold down a good lunch afterwards, something she wasn't able to do over the weekend.

We'll be going back to the treatment center for similar infusions tomorrow and Wednesday, and the doctor is arranging for home-based comfort care treatment.

Lisa's mom is planning to arrive here tomorrow.

Sunday, March 16, 2014

A new day, a new symptom.  After Lisa's lower body swelling, she's had more trouble with a feeling like food doesn't want to stay down, though, she hasn't had any nausea with it.  A wonderful surgeon friend from church came over last night, and when Lisa mentioned that to him, he said that's probably from the increase in outside pressure on the digestive tract organs, making it less natural for food to go down and making it want to go back up.  Today, Lisa has actually had food come back up several when she tried to eat, even if just a little water and crackers or bread, though again without any symptoms of nausea.  We're going to try to move up Tuesday's appointment with the oncologist and see if we can get in to see him tomorrow.

Saturday, March 15, 2014

Several rough days.  Last night Lisa's pain woke her up several times, and she hasn't been feeling good this morning.  Both her arm and lower body continue to show swelling, and seems to be getting worse. We would have expected her arm to be getting back to normal by now since it's been several days since the blockage was opened up by removing her port. We're starting to take daily tape measurements.

Wednesday, March 12, 2014

We made it home yesterday afternoon and Lisa mostly rested between naps sleeping off the medication.  She actually felt pretty well until around 3am when she woke up in pain, but it was cancer-type pain rather than in the areas associated with yesterday's procedure, and the pain level went up and down through the time as I write this at 8am.

We will be leaving for the cancer center in a few minutes to meet with the doctor, scheduled for three days in a row of chemo treatment.  I don't know if he'll want to administer it if he sees her feeling as poorly as she does now before it starts, but he may anyway, since she's depending on it for tumor control and the tumor growth -- even though halted now -- was substantial preceding this current chemo mix and that's why she's in pain so often.


At the cancer center, the oncologist decided that Lisa wasn't recovered enough from the surgery to take chemo.  The radiologist-surgeon yesterday had been somewhat surprised that Lisa was scheduled for chemo the very next day, so this isn't too unexpected.  Because this chemo must be given three days in a row, she is scheduled to see the oncologist again on Tuesday next week and start the chemo then.  Meanwhile, she has slept most of the day today, with periods of feeling poorly when she wakes up but most of the non-sleep time she's been doing just fine.

The doctor also prescribed an extended-release type of pain med that Lisa can use to "keep the edge off" all the time, and use the regular version of that pain medication as-needed.  She hasn't tried it yet...  she's still using the regular version alone.

Tuesday, March 11, 2014

I'm writing this from the waiting area at the hospital...

When the "interventional radiologist" came in to talk with us before Lisa's procedure, he told us that there was a change of plan.  After looking at Lisa's scans in detail, he believes that her port needs to be removed, and that she wouldn't benefit substantially from a stent in her superior vena cava (SVC).  He is going to confirm that with a venogram which will allow him to watch her blood flow in real time via dye and real time xray.  Since there are clots around the port's tube (catheter) that goes into her vein, removing it should take care of the swelling in Lisa's arm and chest.  Unfortunately, it will not help with her leg swelling, and probably will not help with the cause of the pain she had on Saturday unless it was due to swelling against a nerve bundle.  Lisa was very disappointed, since she was hoping for more substantial and widespread relief of some of these symptoms.

= = = = = = = = =

The doctor just came out and talked with me.  Lisa's procedure went well.  Flow through Lisa's SVC was adequate so no stent was required.  Flow through the major artery that Lisa's port catheter was in showed much better flow after it was removed, so she should experience a lot less swelling in her upper right side, especially her arm.

What the doctor confirmed was that the tumor mass is pressing on Lisa's heart, which is why her heart rate is so elevated all the time (120-140 beats per minute even while resting).  But he also told us something new, which is that the tumor is compressing the inferior vena cava (major vessel at the bottom of the heart), and that's why Lisa has swelling in her legs.  Unfortunately, this is not something that's treatable with intervention (stent) in the area that Lisa has the issue, because the stent would have to extend into the heart itself which is too dangerous.  This should be relieved if the cancer continues to respond to the current chemo, not just as "stable" as it is now (no growth), but if the cancer shrinks as it did with the previous successful chemo mix while it was still working.

Monday, March 10, 2014

Though better, Lisa is still having "new" problems, so this morning we headed to the cancer center for more tests, followed by a visit with the oncologist.  There's no blood clots in the area where Lisa was having such bad pain on Saturday on every inhale -- it was likely a "referred pain" from pressure on a nerve caused by her increased swelling.  The increased swelling is accompanied by enlargement of some blood vessels as some of the main veins and arteries around the heart are getting "squeezed" by the tumors.

Tomorrow Lisa will be going for a hospital outpatient procedure to likely put in an SVC stent that will hold open the primary area that's getting squeezed.  The stent itself is a wire mesh tube that is inserted while compressed and then expanded in place inside the vascular structure.  This will potentially relieve a fair amount of Lisa's related symptoms within just a few days following the procedure.  The procedure itself only takes an hour though Lisa will be at the hospital for several hours, but it is unlikely that she will have to stay overnight.  She is expected to be well enough to take chemo the next day (Wednesday).

Sunday, March 9, 2014

Yesterday was Lisa's worst day for pain in the over 3 years since her diagnosis.  We had a lot of people praying for her, and she had a much better night, and woke up this morning feeling much better also.

Saturday, March 8, 2014

Today has been one of those days when Lisa has been in pain.  It's been so bad that I contacted the doctor and he gave us new dosing of pain medication, which still only barely took the edge off for Lisa.  She has been almost completely incapacitated all day today and this evening until around 7pm when she finally started to feel a bit better but then by 10pm she was back to being in substantial pain.

Friday, March 7, 2014

I haven't posted much, but not much has changed.  Most of the time Lisa feels OK, occasionally she feels really good, but sometimes -- and too often -- she's in a lot of pain, even though she's on the pain meds around the clock.

The daily injections of blood thinner I give her are going fine, but it can take  two to three weeks before it has a noticeable affect on the clots.

Monday, March 3, 2014

With the help of the appropriate pharmaceuticals, Lisa said that last night she had the best sleep she's had in months.  Other symptoms remain, and we spent the entire day going back and forth between the two cancer centers in town.  We met with the doctor early this morning, and based on Lisa's symptoms -- especially the swelling I mentioned yesterday -- he had us go over to the other center to have ultrasonic and angio-CT scans done.  They found that although she does still have compression/narrowing on the vessels around her heart, the swelling is most likely being caused by a blood clot in her carotid artery in her neck which has caused narrowing ("stenosis").  She also has a very small clot behind her infusion port.  We went back over to the oncologist's office to discuss, and Lisa will need to be on daily injections of a blood thinner (Arixtra).  I've given her heparin injections in the past, so I can handle it rather than having to go to the cancer center every day for it.

The CT scan showed that the cancer is stable ("patent") and has not grown since the previous CT, and that's an indication that the current chemo mix is having a positive effect.  We're hopeful that another cycle or two causes it to actually shrink.  Because of all the other things that Lisa is going through, she's not going to have chemo treatment this week, and it will be administered next week instead.

In addition to the blood thinner, the doctor wants Lisa to slightly increase her steroid dose, stay on a round-the-clock dosing of her pain medication, and to use sleep aid medication (Lunesta) at bedtime.

Sunday, March 2, 2014

Lisa had a very bad night with a lot of pain and coughing.  She's spent a lot of this morning and part of this afternoon sleeping.  Lisa has been off of prescription pain medicine for a few months now, but today she has to take some again because steroids and over-the-counter pain medicine hasn't provided any noticeable relief.  Within 90 minutes after taking the pain meds (which includes hydrocodone), she was feeling noticeably better.  Lisa did pretty well through the evening until around 9pm when she took another dose, but by 10pm she was in a lot of pain again... and then by 10:30 she was considerably better. It seems strange that both times it took a full 90 minutes to bring down the pain level, and we may have to plan for that in timing the doses.

Tomorrow afternoon Lisa is scheduled for a routine chest x-ray and an appointment with the oncologist as a precursor to her scheduled chemo treatments Tuesday, Wednesday and Thursday.  If it happens, Tuesday is the all-day one, but the doctor has said that he may change things to spread it out more evenly over the three days this time.

In addition to Lisa's coughing and pain level increase, we're seeing more swelling on the right size of her body, including her arm and leg.  It's possible that this is due to pressure on the heart arteries and veins on that side (SVC Syndrome) that started coming back in December, but of course could have other causes.  We're going to try to reschedule to see if we can do the x-ray and get in to see the oncologist in the morning, to leave time for other possible tests if necessary in the afternoon.

Friday, February 28, 2014

Lisa had her screening and pre-surgery "counseling" with the cataract specialist.  He confirmed what the previous ophthalmologist said, that it's a type of cataract that comes from her cancer treatment rather than age.  Unlike age-type cataracts that develop over decades, this type develops quickly in just a few months, and will continue to get noticeably worse, so we've scheduled the surgery for April.  Lisa's dominant eye will be done first, and then her other eye a week later.

Lisa has had more chest discomfort and pain today, especially when she coughs, which is fairly often.  Other than the outing to the cataract surgeon's office, she's spent most of the day resting.

Wednesday, February 26, 2014

Lisa had a rough night with pain and coughing, and this morning she has pain that she hasn't had to deal with for the last couple of weeks.  Her bones especially hurt where we know she has tumors, and it's even more difficult for her to walk from room to room in the house.

Monday, February 24, 2014

Lisa had a fairly good weekend -- we mostly relaxed, but we were able to go out to eat one early evening also.

Friday, February 21, 2014

This afternoon we went to an ophthalmology specialist to get Lisa's eyes examined medically (rather than for a change in prescription).  We found out that her loss of vision acuity and the problems she has in bright environments is due to cataracts -- but not the typical kind of cataracts that occur over time due to aging, but cataracts that are brought on as a side effect from her cancer treatments.  But unlike other side effects, they'll never go away, even if Lisa didn't still have to be taking chemo, but "standard" cataract surgery (lens replacement) would take care of it quickly.  Lisa hasn't decided yet whether (or when) to do it.

Thursday, February 20, 2014

What a difference a day makes!  Lisa was quite a bit better yesterday, and got her appetite back, starting the day with bacon and eggs and feeling well enough last night to want to go out to dinner (which we did).

Wednesday, February 19, 2014

Lisa's blood tests taken yesterday just before we met with the oncologist showed that is generally "tolerating" the chemo well, including kidney function which is a concern with this chemo combination, despite the side effects she has been experiencing.  The only significantly out-of-whack component in the blood test results was Lisa's magnesium level, which wasn't just low, but "physician-alert low" according to the report (the first time we've seen that notation on any blood test component in Lisa's previous reports).  Many chemo drugs, especially platinum-based ones, are known to deplete various minerals within the body and blood, including magnesium.  Low magnesium can result in muscle weakness and an irregular heartbeat.  With past chemo treatments, Lisa has been able to bring up her magnesium by increasing certain foods, particularly bananas, brown rice, and dark chocolate(!), but this is so low that she'll also have to take some prescribed magnesium pills.

With Lisa starting to feel better each day after Saturday's "post-chemo crash" and the fact that her pain level in her chest is lower (it's actually usually now more of a "discomfort" than "pain"), the doctor said he is "somewhat optimistic, but we'll have to wait and see how it goes from here."

Tuesday, February 18, 2014

Lisa is again feeling a bit better today than the day before.  We'll see the oncologist this afternoon.

Monday, February 17, 2014

Lisa was a bit better today, so it does appear that her recent super-bad days were from the chemo.  Although Lisa is having the predicted side effects from the chemo, the chest pains she was having before this latest type of chemo was started have lessened, so we're hopeful that it's already started to work on shrinking the cancer.

Tomorrow afternoon I'll take Lisa in for blood tests and then we meet with the oncologist.

Sunday, February 16, 2014

After having a rough day yesterday right up until bedtime, Lisa woke up this morning feeling quite a bit better, but after breakfast she went back to bed.

She rested all day and napped off and on, but by dinner time was feeling a bit better and we went out for a quick trip for a sub sandwich.

Saturday, February 15, 2014

Lisa didn't sleep well last night, and this morning her blood pressure is low, hovering around 90 over 50.  She's drinking fluids and has had some saltines with peanut butter, and it's helping the blood pressure move up a little.  She's mostly feeling very fatigued and is drifting in and out of sleep in the recliner.  This type of fatigue/weakness is an expected result of the current chemo, but of course we always wonder how much of it might be due to progression of the disease if the chemo isn't being effective -- but there no reason not to just presume it's the side-effects of the chemo at this point.

Since the house doesn't have an intercom, I've set up FRS radios so that she can reach me anywhere in or around the house with just one button if she wakes up and needs something.

Friday, February 14, 2014

Lisa has been feeling weak most of the day, getting a bit worse as the day has gone on.  She's slept quite a bit.

Thursday, February 13, 2014

Lisa's chemo today was dripped in more slowly, so we were there for over 3 hours.  The slower drip may have made a difference in that Lisa did not get a headache today.

Tomorrow afternoon we go back for her immune system/white cell booster shot (Neulasta).  Next week she won't have any treatments, but will have to go in to get blood tests.

Wednesday, February 12, 2014

Today was day two of the three consecutive days of this new chemo.  Yesterday was a long treatment for Lisa -- we were actually at the cancer center for over seven hours, and Lisa intravenously got 7 pounds (!) of fluids (that's over three liters) including pre-meds, the chemo, and chemo carrier fluids.  Today was a little over two hours, and tomorrow should be about the same... and then Friday Lisa only has to go in for a quick injection of her immune system (white cell) booster.

Lisa got headaches during the chemo infusions, but now is done fine, though she is very fatigued this afternoon and keeps dropping off to sleep in the recliner.

Monday, February 10, 2014

Lisa had a lot of pain over the weekend and again this morning, beyond what her pain medicine was able to handle, so we went in to see the oncologist this afternoon rather than waiting until tomorrow.  He prescribed a stronger pain medication, and tomorrow's chemo is going to be shifted to the next regimen, which is Cisplatin and VP16.  It will be more harsh on Lisa than what she took in the most recent chemo mix, but he said that if the previous chemo was going to have an adequate effect, it should have at least stopped the growth over the first cycle, but the cancer grew by over 30 percent during that time, so we need to try something else.  The treatment regime for this mix is three days in a row, and then three weeks off before the next cycle.  Tomorrow's treatment is the longest of the three days, taking around six hours.  Wednesday's and Thursday's treatments will only be a couple of hours each.

Friday, February 7, 2014

This morning we were told that the supplemental brain scan needed to be done "sooner rather than later".  We found out that what they were looking for was possible blood clots in the brain -- indications showed up on yesterday's MRI brain scan but it wasn't definitive. The cancer center coordinated with the imaging center at a local hospital to work us in early this morning.  Today's scan used contrast to show the brain's arteries and veins and how well blood was flowing and look for any blockages (occlusions or clots).

The scan showed that everything there is fine, so that puts it to rest.

In addition to the radiologist report for the MRI, we got the report for yesterday's CT, and it indeed shows that there is "continued slight growth" of the cancer.  However, when you do a calculation of mass on the "reference tumor", it still comes out to an increase in size by 31%.  The tumor also continues to press on the major arteries and veins around her heart.  There was a new observation also, and that is that there is small area around her heart where some fluid has started building up.

We see the oncologist on Tuesday and will have more detailed discussion on what to do next.

Thursday, February 6, 2014

Lisa had her scans this afternoon.  We haven't gotten the written reports, but we were told that the brain scan showed no cancer there.  In talking with the oncologists nurse, she said the radiologist and the oncologist are recommending an MRV scan which shows better views of the vascular system.  There's a little confusion since we don't have much information -- MRV is "Magnetic Resonance Venography" which images blood vessels to, from, and around the heart, but the nurse gave us the impression that the need for this was a result of the brain MRI.  However, the equivalent of an MRV that images blood vessels in and around the brain is called and MRA, "Magnetic Resonance Angiography". We do already know that Lisa's tumor is compressing certain major veins and arteries around her heart, so an MRV makes more sense, but we'll find out tomorrow.

Although we don't have the report or info from the oncologist on the CT results, I got a copy of the scan images and have compared them to the December CT.  My interpretation of what I'm seeing is that the tumor growth has slowed compared to the growth rate between September and December, but continues.  Of course what we'd hoped for -- but didn't expect because of Lisa's symptoms -- is that this chemo would have halted growth and in fact reversed it, as the previous chemo had done for many months.  I should be able to get the actual report tomorrow, and in any case we'll be meeting with the oncologist on Tuesday.  

Wednesday, February 5, 2014

Lisa woke up with more pain in her chest and back, where December's scan show the worst tumor growth.  She hasn't had to use prescription pain medicine for a few months, but the oncologist suggested that Lisa use some low dose/low narcotic medicine now to get some relief.

Tuesday, February 4, 2014

Lisa has been feeling poorly, including chest pain and bone pain.  After talking with the oncologist and getting examined, his observations was that the chemo might not be working as hoped.  He has scheduled a CT scan for Thursday afternoon to get confirmation one way or the other so we can make a determination of most appropriate treatment, whether it's to continue what Lisa is already getting, or to change to something else.  Lisa's blood counts are better though, and the doctor decided an iron infusion isn't needed at this  point.

Lisa will also be having an MRI brain scan on Thursday, but it's primarily routine and isn't expected to show any problems.

Sunday, February 2, 2014

Lisa has had a bit of a 'mixed' weekend.  She's mostly feeling pretty wiped out, and with an elevated heart rate.  This morning it was as high as 138 bpm from mostly just walking from room to room in the house.

Tuesday we meet with the oncologist, and Lisa may get an iron infusion at that time.

Thursday, January 30, 2014

Lisa has done better the past few days, but today the side effects from her white cell booster shot seem to be starting.

Monday, January 27, 2014

A bad evening turned into a bad night that continued into a bad morning, but thankfully by around noon it started to get a bit better.  This afternoon Lisa had a chest x-ray, which showed no change since the last one, and had her ultrasound, which confirmed no blood-clot problems.  The doctor doesn't know if Lisa's fever last night and this morning was a reaction to the blood transfusion (which happens sometimes) or just delayed post-chemo side-effects (which happens often).

Lisa did have her white cell booster shot, and doesn't have any treatments or doctor's visits scheduled until Tuesday of next week, when she may get the iron treatment.  Lisa's "reserve" iron count is ok, but her "free iron" count is very very low, which is a bit unusual but not unheard of.  The proposed treatment is Injectafer.

Sunday, January 26, 2014

Lisa felt really good this afternoon after her blood transfusion... and later this afternoon she had her final antibiotics infusion without any problems... but by 9pm she was running a fever and feeling badly.  I will be taking her to the cancer center tomorrow afternoon for her Neulasta white cell/immune system booster shot, and we know that will also cause her to feel poorly for a few days with flu-like symptoms.

Friday, January 24, 2014

Lisa's pre-chemo blood tests today show her anemia is worse despite the blood transfusion last Sunday, so she is going to have to have another one this weekend.  There is also some concern about swelling in her leg, though that's probably just a flare-up of her lymphedema -- but Lisa is being scheduled for a "Dopler" on Monday, which really means an ultrasound examination of the affected areas.  Lisa is still having to get her chemo infusion today, and it is just starting as I am writing this.

Today it is THREE YEARS since Lisa's original diagnosis, which is a reason to celebrate -- Lisa is beating the odds.

Thursday, January 23, 2014

Lisa seems to be feeling somewhat better and the side effects from this chemo series have been reasonably well tolerated.  Most notably, she hasn't had nausea with it.  She's even kept most of her hair, which she'd been told would be falling out in clumps or be completely gone by now. Of course what matters is if it's working... we won't know for sure until a scan, but general indications seem positive, though she still gets some very strong bouts of coughing.  Tomorrow afternoon she gets her third dose in this 'cycle', and Monday she'll get her white cell booster shot but will otherwise be off from chemo next week.  This Sunday she'll complete her daily antibiotics infusion.

Tuesday, January 21, 2014

The benefits of the daily antibiotics infusions along with Sunday's blood transfusion seemed to have "kicked in"... today she has felt noticeably better.

Sunday, January 19, 2014

Lisa's been feeling so poorly, the blood infusion was done this afternoon at outpatient oncology services at the local hospital rather than waiting for tomorrow at the cancer center.

She already has better color, and hopefully tomorrow she should start feeling better.

Friday, January 17, 2014

Lisa woke up feeling much better, and was no longer running a fever, but by late morning was feeling really poorly again.

She had a chest x-ray and then saw the oncologist.  The chest x-ray shows an increase of fluid around the lung, but not pneumonia.  Lisa had her chemo as scheduled, even though she really didn't want to because of how badly she was feeling.  The doctor also started her with an infusion of antibiotics, and she'll have 9 days of home-infused antibiotics as follow-on to today's dose.

Lisa's anemia (low red cell count) is substantially worse, so on Monday she'll be getting another blood transfusion.  Not all anemia is alike -- she has iron-deficiency anemia, so she may be getting an iron infusion in the near future, which could potentially help longer than the benefit of a blood transfusion, which helps right away but not for very long.

Thursday, January 16, 2014

Lisa has gradually been feeling worse over the last few days -- especially at night -- and thinks that the steroids aren't necessarily helping, but actually cause her to cough more, which is quite painful for her, magnified by her other symptoms from the cancer.  Tonight she is feeling especially poorly and running a 100.4 degree fever, which certainly contributes to it.

Chemo is scheduled for tomorrow, but because of the way she's feeling, she'll be getting a chest x-ray first, and then seeing the doctor after her usual blood tests rather than going straight to the chemo treatment as originally scheduled.  Thankfully Lisa didn't get nausea as a side effect of the chemo, but we don't know if these other worsening symptoms are from the chemo complications, or if they're from the cancer itself.

Monday, January 13, 2014

This afternoon, Lisa was experiencing additional symptoms similar to early in her diagnosis:  ear pain, and swelling in her neck.  The swelling can be from the known constriction on her 'superior vena cava'  which can slow down blood return flow from the upper body (SVC Syndrome), and the ear pain is often a 'referred' pain from pressure by tumors in the chest along a nerve bundle that routes up along the neck and ears.  Besides trying to shrink down the tumors with chemo, the main treatment would be higher steroid doses as anti-inflammatories.

As of this evening, a second dose of steroids has helped and Lisa is feeling somewhat better.

Sunday, January 12, 2014

Lisa hasn't had any new symptoms, so there doesn't seem to be any issues for her with this chemo.  She's still winded and easily fatigued, but she also had that prior to chemo.

Friday, January 10, 2014

Yesterday's chemo treatment went fine, and Lisa slept ok until around 5:30 this morning when she had a lot of very bad coughing, but that's not unusual after she's been laying down or sleeping a long time.  She did very well most of the day until mid-evening when she started getting fatigued, but also coughing more again and started feeling generally poorly as some of the pre-chemo infused steroids began wearing off.  We'll see how she does through the weekend.  Fatigue is to be expected, and we can deal with that.  We're hoping that she doesn't develop any other of the potential side-effects.

Thursday, January 9, 2014

Blue Cross is still doing their "pre-determination" as to whether to approve the Abraxane portion of Lisa's treatment, but meanwhile the cancer center contacted Celgene, the manufacturer of Abraxane, regarding a patient support program they have -- and Celgene's medical staff has already reviewed Lisa's case and agrees that Abraxane treatment is warranted -- and Lisa can start today... they're sure enough that it will eventually be authorized by insurance that they guarantee to cover it if insurance does not.  It may have some aspect of being self-serving for Celgene to have Lisa start sooner and potentially be on the treatment longer, but it is also patient-compassionate.  I am writing this from the cancer center and Lisa is about to get the first infusion of Abraxene and Carboplatin.  With the additional premedications that have to be given as part of the process to help reduce potential near-term side effects -- especially nausea -- it will take about 4 hours.

Tuesday, January 7, 2014

The treatment authorization request is "in the system" and "being evaluated" by the insurance company... we're waiting.

Monday, January 6, 2014

A full day with doctors... the radiation oncologist decided that it is best to hold off for now so that radiation treatments don't inhibit hitting the cancer in a systemic way full force with the new chemotherapy.  However, by the end of the day the insurance company still were still reviewing the intended treatment and hadn't yet given it the required pre-authorization, so we're "on hold" for hopefully no more than a few days while that's being done.  That's normally done within a week but supposedly can take as long as 30-45 days.  We're going to try to get that expedited faster than the normal doctor office-insurance company interaction... Lisa is got on the phone with the insurance company after we got home and made progress but it's after 5pm here so the insurance folks at our Cancer Center have gone home for the day.  We'll try to nudge it forward more tomorrow.

Sunday, January 5, 2014

Lisa has been feeling consistently poorly, with pain, fever, fatigue and other symptoms.  We're hoping the treatment regime that should start this coming week will help quickly.  We see the radiation oncologist tomorrow at 11:00 followed by the primary oncologist at 1pm.

Thursday, January 2, 2014

We met with Lisa's primary oncologist today.  He said he was disappointed by the scan but not surprised.  This is common -- cancer is "smart", especially Lisa's type of cancer (Non-Small Cell Lung Cancer, NSCLC), and over time it adapts to chemo thrown at it, eventually rending the chemo ineffective, forcing a change.  The oncologist would have been ready to start with a new chemo mix today, but is going to wait until Monday after we've seen the radiation oncologist, since the radiation dose can affect how chemo is administered.   The primary oncologist is suggesting that low-dose radiation treatment be limited to the affected vertebrae and/or perhaps also a section of the pelvis.

For the new chemo, the oncologist told us that it's a matter of trial and error -- there's no way to know what is going to be effective on Lisa's cancer.  They'd administer the chosen chemo mix for two "cycles", which equates to between 6 and 8 weeks depending on the type of chemo, and then run another scan to determine if it's having a positive effect.  If it is, we continue it... if it is not, we change to another type of chemo.

His recommended mix right now is Abraxane and Carboplatin.  This is a relatively new chemo combination for NSCLC, approved for that use by the FDA in 2012, though it's been used for breast cancer for almost a decade.  Abraxane can also be given alone, but studies show that it is not nearly as effective as when combined with Carboplatin.  The combination produces at least some positive effect in approximately 33% of NSCLC patients.

The next-in-line alternative (but harsher as far as side-effects) would be a mix of Etoposide (VP-16) and Cisplatin.  This has been used as a first-line treatment for Small Cell Lung Cancer (SCLC), but has also been studied for use as a down-line treatment for NSCLC since the 1980s, producing at least some positive effect in roughly 25%-35% of patients (depending on the study).

Tuesday, December 31, 2013

We met with the orthopedic specialist today to have an evaluation of Lisa's vertebrae that show cancer (primarily L4, with a small spot on L5).   He took additional x-rays and determined that the bone integrity there is currently good, but considering what the PET scan showed, it is definitely worth having the radiation oncologist evaluate it for preventive treatment.  I've already discussed it with the RadOnc, and we have an appointment to see him on Monday.  Additionally, he's going to evaluate whether there is potential benefit of doing some radiation treatment on the tumors encasing Lisa's heart vessels.

The orthopedic specialist also looked at x-rays of Lisa's femur and pelvis and compared them to x-rays when he'd seen her a year ago.  Those bone areas look nearly identical, which means that they still have adequate strength, and the doctor stated that he was pleasantly surprised that they hadn't gotten worse since that's what usually happens.

Monday, December 30, 2013


Today's blood tests show Lisa's blood counts in general are quite good, and she is only slightly anemic now.  However, her resting heart rate is still around 125-130 and often spikes up into the 150s with even the smallest bit of activity such as walking from the bedroom to the kitchen.  Today's CT and PET scans show why.... we got the unexpected news that the cancer has grown and spread substantially since the September scan.  A large portion of Lisa's right chest shows active tumor, and the spot in her femur and spots on her hip are growing again, as well as some new areas of spreading.   All of this means that the current chemo mix is no longer effective.  The fever that Lisa has been experiencing is almost certainly "tumor fever" as this growth has been occurring.

The CT report also states that "tumor encases the right main pulmonary artery as well as the right superior and inferior pulmonary veins, with stenosis (narrowing) of the superior vein", so of course this is likely a large portion of what has caused her heart rate to continue being high even as her anemia has lessened.  Lisa dealt with the Superior Vena Cava (SVC) Syndrome element of this before, very early in her diagnosis, but of course this is an ongoing concern.

One of her lower spine vertebrae (L4) has also gone from having a tiny tumor spot to being fully "lit up" on the scan.  This is going to require followup and may be a candidate for radiation treatment to keep it from causing further bone degeneration there... we'll have to wait until we see our primary oncologist on Thursday and probably consult again with the orthopedic specialist.  I've already talked to the radiation oncologist to confirm that there's no problem with radiation directly to spinal cord vertebrae as a palliative treatment.

With all of the growth and spread, we're grateful that Lisa's left lung is currently clear, allowing her to get adequate air and oxygenation.

Saturday, December 28, 2013

Lisa has been quite fatigued today and also running a fever as high as 100.2 F.

Thursday, December 26, 2013

We had a very nice -- though quiet -- Christmas.  The last few days Lisa has had both good times and not-so-good times.  She still gets tired easily, has had some occasional fever, headaches and nausea.

On Monday morning Lisa will have both CT and PET scans, for a reasonably thorough assessment of the effectiveness of the recent chemo treatments.

Tuesday, December 24, 2013

One of Lisa's friends from her hometown sent a display plate with these words of inspiration that are worth sharing:

What Cancer Can't Do
It can't prevent Love.

It can't conquer the Spirit.
It can't silence Courage.
It can't take away Memories.
It can't weaken Faith.

It can't defeat Hope.

It's Christmas Eve day, and we're grateful to be sharing another holiday season together.  And we're very grateful for caring family and friends.

Sunday, December 22, 2013

Lisa is still doing well during the day.  She sometimes gets fatigued and sometimes runs a fever at nighttime, but overall has been feeling good.

Thursday, December 19, 2013

Lisa continues to have a good week, and has done well except for a few hours here and there when fatigue sets in and she has to rest.  This evening we went out to see a movie at the theater, which we haven't done for quite awhile.

Tuesday, December 17, 2013

It took almost a week for Lisa to recover from the chemo treatment, despite the blood transfusion, but this morning she woke up feeling SO much better.  She went out for lunch and ran some errands, and even this afternoon as I write this she's still feeling good.

Friday, December 13, 2013

Lisa had her blood transfusion this afternoon, and it went smoothly.  We were there about three hours total which  included some pre-medication time, with the actual transfusion/infusion being done slowly over two hours.  By the time it was halfway done, Lisa already had better color in her face and hands.  If all goes as expected, she'll have more energy tomorrow, though she'll likely be dealing with the flu-like side effects of yesterday's immune system booster treatments, which we'd expect to continue all weekend.

Wednesday, December 11, 2013

Lisa's pre-chemo blood tests today showed her anemia continues to get worse, despite Lisa trying to eat more red meat and protein.  Her red blood count is the lowest it's ever been since she first started getting cancer treatments, so she is being scheduled to get blood via transfusion on Friday.  She's not so low that she has to have a transfusion, but she's low enough that she'll certainly benefit from it and feel better overall and less fatigued.

Lisa did have her chemo treatment today, and will have to go in tomorrow for her immune system booster treatment.  But this is her last week of treatment scheduled until January.  She will still have to go in for blood tests before then, and on Dec 31st she'll also be going in for a PET/CT scan.

Sunday, December 8, 2013

Thankfully, Lisa got past the worst of the side effects and has had a better weekend.  Of course, she'll be hit with chemo again this coming Wednesday.

Friday, December 6, 2013

Lisa is having her bad Thursday afternoon and Friday that usually follows a Tuesday chemo...

Tuesday, December 3, 2013

Lisa's pre-chemo blood test showed some improvement in her red blood count (so slightly less anemic) but still well below the normal level and she has other blood chemistry elements that are out of range.  She had a chest x-ray which showed no signs of infection or fluid buildup, so Lisa had her normal chemo treatment this afternoon.  She'll have another next week, and then at the end of the month will have CT and PET scans to evaluate the effectiveness of the current treatment.

The doctor said that Lisa's fatigue level and tendency to get winded so easily goes beyond her anemia, and is part of being so "run down" from the long-term effects of chemo.

As usual, shortly after getting home from the cancer center, Lisa has gone to bed and to sleep.

Sunday, December 1, 2013

Lisa was well enough to travel, so we were able to drive up to Kentucky to spend Thanksgiving with family. She didn't have enough energy to do much once we got there, but it was still very good to have gone.

Wednesday, November 27, 2013

Lisa had a better day today.  She is doing ok as long as she's resting, but trying to do even little things around the house puts her heart rate up above 140 and she has to lay right back down.  We were able to go out for dinner, though, which was nice, but she went back into bed after we got home.

Saturday, November 23, 2013

Lisa had a blood test done yesterday, and her anemia has gotten somewhat worse than it was at the last test, back to where it was at its worst a few weeks ago.  This causes her to generally feel poorly and get very easily fatigued.  She has also had more trouble sleeping the last several nights.

Thursday, November 21, 2013

Up, down, up, down... the roller coaster ride continues.  Lisa's been feeling poorly again today, and even worse this evening, running a fever plus other symptoms.

Wednesday, November 20, 2013

Lisa had a bad evening and overnight with fever and bone pain, but woke up feeling much better.  She was able to do a full day of work without having to stop and lay down... she's feeling much better than she has been.

Monday, November 18, 2013

Lisa is doing better this morning.  She has this week and next week off from chemo, though she'll still have to go in for blood tests.

Sunday, November 17, 2013

As I'm writing this at around 2pm, Lisa has spent most of the day in bed.  She feels weak and winded.

Wednesday, November 13, 2013

Lisa's chemo treatment was uneventful... as usual, she's gone to sleep soon after getting home.  Her pre-chemo blood tests showed improvement.  She's somewhat less anemic, and other elements of her blood chemistry and counts also improved, although her white cell count is dropping as expected.  Tomorrow afternoon I'll take her back to the chemo center for an immune system (white cell) Neulasta booster shot.

Tuesday, November 12, 2013

Lisa is still running a slight fever off and on, but usually has good mornings and feels a lot more poorly in the afternoon and evenings.  Her chemo treatment has been moved to tomorrow.

Saturday, November 9, 2013

Lisa woke up feeling a LOT better this morning.  She slept well, and her fever is gone.  We're expecting a good day.

Friday, November 8, 2013

Lisa does ok in the morning, but as the day wears on, she doesn't do as well.  She's been running a 100.8F fever yesterday and today, even with her meds which includes Tylenol.

Tuesday, November 5, 2013

Lisa did well the day after her bronchoscopy procedure, but she has been feeling poorly yesterday and today, running a slight fever and very easily winded with a high heart rate and getting tired, having to sleep part of the day.  This afternoon's pre-chemo blood tests show why:  Lisa is even more anemic then before, and other elements of her blood chemistry are also not as they should be.  This is almost certainly because the cancer is becoming active again since she's been off of treatment for five weeks.  She did have chemo today, and will go through two "cycles" before her next PET/CT scan.  Two cycles  are two consecutive weeks of treatment, two weeks off, and then another two consecutive weeks of treatment.  The PET/CT scan will two weeks after the treatments.

As is usually the case, Lisa went right to bed and to sleep after we got home from chemo early this evening.

Saturday, November 2, 2013

Lisa came through the procedure fine.  The doctor saw a lot of blockage and drew me a simple sketch.  The visible blockage was scar tissue rather than live tumor. The upper channel is completely blocked, and the lower one is very narrow, being "squeezed in" from outside the channel, possibly from tumor but probably from scar tissue or general lung collapse from radiation treatment.  The diagram below reproduces what he sketched for me... the green line is of course the direction of the bronchoscopy tube, and the blue shows the blockage and narrowing he saw.

Despite the blockage, Lisa is getting plenty of air (blood oxygenation) and doesn't have trouble breathing, though it sometimes seems that way because she gets so winded combined with a high heart rate due to anemia and her body generally being run-down.

There was no evidence of infection, though they'll run cultures anyway.  This likely means that Lisa will be able to re-start chemo treatment this coming week if her general health is good enough.

Friday, November 1, 2013

Lisa met with the pulmonary specialist this morning, and we also had short discussions with Lisa's primary oncologist and the cardio-pulmonary surgeon.  Lisa will undergo an outpatient procedure at the local hospital, conducted by the pulmonary specialist.  It will be a routine bronchoscopy to examine and hopefully flush out the occluded (blocked) area of her lung, and to get samples of whatever is behind that blockage to culture.  If there is indeed infection and the bacteria is identified, Lisa can be given the "right" antibiotic that is ideal for the circumstance, since the general antibiotics she's already received have not cleared it up.

We're to be at the hospital at 7:30am for a 9am procedure, and Lisa should be released at around 11am to go home.  The procedure itself should only take 5 to 10 minutes.

Wednesday, October 30, 2013

Lisa's really feeling poorly, but she had her CT scan this morning.  We don't have official results, but in looking at the images, it appears generally stable compared to the scan at the beginning of September as far as tumor mass.  However, what they're really wanting to determine is where the infection might be and if it will be accessible to a laser brochoscopy procedure.  We're hoping for a call from the oncologist or his nurse with those results.

ADDED:  We heard from the oncology nurse, and my interpretation of the images is correct according to the radiologist report... however, the doctor wasn't in the office today so we still don't know how the details of what's being seen might affect the candidacy for a laser bronch.

Lisa is even more sick tonight, running a fever as high as 100.8 F.

Tuesday, October 29, 2013

No chemo today.  Lisa is still anemic, and though her blood chemistry is adequate, it's not ideal.  However, the main reason for not giving chemo is that Lisa appears to still have an infection of some kind that the antibiotic infusions have not taken care of.  A chest x-ray today shows that there may be a bit more occlusion (blockage) in one lung area.  This may be caused by some tumor growth, but in any case, a blockage of this type can make antibiotics less effective on the area behind the blockage which can not properly 'drain'.

Lisa will get a chest CT scan tomorrow, which will provide a more detailed look at the area.  She will see a pulmonary specialist on Friday (the one that originally diagnosed her cancer), and a cardio-pulmonary surgeon for a consult on Tuesday to evaluate her for another laser bronchoscopy (a sort of laser roto-rooter that can clear out blockages if they're in the larger bronchial branches.

Sunday, October 27, 2013

Lisa had her final infusion in this series today, and early this evening a home-care nurse came and removed ("de-accessed") the fitting attached to her "port".

Lisa had been doing better, but tonight she's been feeling poorly again and running a fever.

Saturday, October 26, 2013

Lisa is doing better, though still occasionally runs a bit a fever.  Today's and tomorrow's infusions are her last ones, and then she'll see the oncologist again on Tuesday for an evaluation and probably a chemo treatment..

Tuesday, October 22, 2013

Lisa's daily infusions of antibiotics and getting more rest seem to be bringing some improvement.  She'll be continuing the treatments all week.

Friday, October 18, 2013

Lisa was feeling even worse today, so the oncologist's office ordered a chest x-ray to make sure there's no pneumonia (and there isn't) and then she also went in for an infusion of antibiotics.  She'll have to be on home-based infusions every day for the next nine days.

Wednesday, October 16, 2013

Lisa felt a lot worse this afternoon and this evening.  We're wondering if she's going to need an antibiotic infusion after all.

Tuesday, October 15, 2013

I'm over my head/chest cold other than a lingering cough, but Lisa still has hers a bit, including a slight fever today before our appointment this afternoon with the oncologist.  Lisa's blood chemistry looked ok -- still anemic but stable or improving in most measurements.

Because Lisa still seems to have a bit of a cold, the doctor decided that Lisa should not have chemo this week.  Once she restarts, she'll have two weeks of chemo (one "cycle"), then two or three weeks off, and then another two weeks of chemo.  A week or more after that, Lisa will have another PET/CT scan to evaluate if the treatment is continuing to be as effective as it was at the time of the last PET/CT.

The doctor did say that Lisa appears to be at the tail end of her cold, but he would have recommended taking the infusion last week as a prevention of potential complications.  However, Lisa's immune system (primarily blood white cell count) is good right now so her decision not to have antibiotics last week turned out ok, 

Friday, October 11, 2013

Both Lisa and I are over the worst of our "colds", or whatever they were.  Lisa decided to try to get by without having the antibiotics infusions.  If she continues to improve without them, and her blood counts test as acceptable, her next chemo is scheduled for this coming Tuesday.

We're both going to try to rest up over the weekend and let our bodies get back to 'normal'.

Wednesday, October 9, 2013

I'm off the worst of it, though I'm still too sick to go into the office.  Lisa has had hers for well over a week now.  We've called the doctor's office to see what they suggest for her.

Tuesday, October 8, 2013

I'm improving, but Lisa has gotten worse.  We'll probably go in tomorrow to get her an antibiotic infusion.

Sunday, October 6, 2013

Lisa's still got it, and as of this evening, I think I'm now getting it too...

Saturday, October 5, 2013

Lisa is still sick and coughing with common-cold type of symptoms.  We'll probably go to the oncologist on Monday, and consider an antibiotic infusion as well as a home-infusion series.

Wednesday, October 2, 2013

This week and next week are 'off' weeks for Lisa... no chemo.  Yesterday she had blood drawn, and the results are a mixed bag, but mostly good/stable.  However, yesterday she also started showing symptoms of getting a cold or the flu, and today those symptoms are worse, including more mucus and coughing.  Presuming it is indeed a flu or a cold and it's viral, she's going to try to let it get through its cycle on its own, without taking antibiotics like she would if it was a potential chemo or cancer complication.

Thursday, September 26, 2013

This afternoon and evening is when Lisa usually when the side-effects of a Tuesday chemo treatment start to hit, but other than fatigue, Lisa has been doing quite well today.

Tuesday, September 24, 2013

As expected, Lisa's pre-chemo blood tests this afternoon show that last week's chemo has made her more anemic (red blood cell count) and lowered her immune system (white blood cell count).  Her other blood chemistry indicators are in reasonable range.  The chemo treatment went well, and she has spent most of the evening in bed.

Tomorrow afternoon she will go in for an immune system booster (Neulasta).  We know that this will probably give her flu-like symptoms over the weekend when she'd usually feel better, but it's necessary so that her white cell count doesn't crash further.

Sunday, September 22, 2013

True to the usual pattern, Lisa was feeling better by Saturday, and had a good weekend.  She ran some errands Saturday morning, and then we went out for a late lunch to P.F. Chang's.   Lisa went out to do some shopping on her own this afternoon, but she quickly got feeling wiped out and came home without being able to go to all the places she'd planned.

Tuesday afternoon will be another chemo treatment.

Thursday, September 19, 2013

As is usually the case after a Tuesday chemo treatment, it's Thursday afternoon and the side effects have hit Lisa.  She's feeling poorly and staying in bed this evening.  If the pattern continues, she'll feel better by Saturday.

Tuesday, September 17, 2013

Lisa had a very good weekend... but finally today she had to spend the afternoon at the cancer center for her chemo treatment.  It went well, and as usual she went to bed (and to sleep) shortly after we got home.

Friday, September 13, 2013

Lisa's blood work looked better, though she is still anemic.  The oncologist concurred that the PET scan images showed more improvement than the initial interpretation of the radiologist's report, and the current mix of chemo is continuing to be effective.

Lisa will start chemo again on Tuesday at the same relative high dosage, but will take an extra week off between 'cycles' (which means two weeks of chemo, and a two week break) to give her more time to recuperate.

Wednesday, September 11, 2013

Lisa continues to do exceptionally well.  Other than her trouble walking, she's been feeling great.  Her heart rate is back in normal range, no fevers, no chest discomfort, and she doesn't get as fatigued.

We're supposed to meet with the oncologist on Friday afternoon to talk about future treatment.  It's really a balancing act.

Sunday, September 8, 2013

Lisa has had a very good weekend, and as is usually the case, the farther she gets from chemo, the better she feels.  The symptoms from the treatments continue to be worse than her symptoms from the disease, but of course we recognize that the treatments are very necessary.

Wednesday, September 4, 2013

I got the image disc today, and it tells a much more encouraging story.  We can see from the images that the current chemo combination is actually working very well, making it worth the difficult time that Lisa has had during the last two months of treatment.  The report discussed improvement in maximum intensity at the core of the primary tumors, but it didn't mention size.  From the images, we can see that the amount and tumor size of active cancer is not only substantially less than what was seen in July, but more similar to the way it was in the December-to-April timeframe.

Tuesday, September 3, 2013

Lisa had a full afternoon with a blood test, PET/CT scan, and an appointment with the oncologist.

The blood test shows slight improvement but generally stable.  Her white blood (immune system) counts and electrolytes (minerals and other markers) are acceptable, though she's still anemic (red cell counts) which contributes to her fatigue.

I wasn't able to actually get a disc of the PET/CT images today since their CD writer wasn't working, but the oncologist told us that compared to the previous (July) scan, Lisa's cancer is "stable, and actually showing slight improvement."  I'll have a better feel for that when I am able to review and compare the images (hopefully tomorrow), but in reading the details on the radiologist's report, the primary lung mass shows what seems better than merely "slight".  There was a 38% percent reduction in measured metabolic activity ("SUV") which equates to less live/active cancer, and in Lisa femur and hip it shows as 27% reduction in SUV.

Monday, September 2, 2013

Lisa's doing better today.  Tomorrow afternoon is her PET/CT scan and an appointment with the oncologist to learn the results.

Saturday, August 31, 2013

Lisa came off her home-based antibiotics on Thursday, but this afternoon she's feeling poorly again and running a fever.

What do you do to pass the time when you're in bed and don't feel like napping or watching TV or reading?  Digital jigsaw puzzles on your laptop computer!  We tried this one.  Though it's rated as a kids puzzle, it was still quite challenging and there are many more to try on that website.

Thursday, August 29, 2013

Lisa's blood counts were much better today.  Although she is still anemic, her electrolyte counts are back in normal ranges and her white count has improved enough that she no longer has to take the daily treatments of immune system booster and antibiotics.

As I'm writing this around 11pm she isn't feeling all that well, but overall she's definitely improved over the last couple of days.

Wednesday, August 28, 2013

Tomorrow Lisa will have another blood panel done, and if the counts are better, it will be the last of the required daily trips to the cancer center for awhile.  It will also be her last day for home-based infusions of her antibiotics.

Lisa's home-based infusions are not done in the same manner as the ones done at the cancer center, or what is typically done in a hospital setting.  There's no bag of fluids on a pole dripping fluid into a tube attached to the patient.  Instead, her antibiotics or other fluids are in an "elastomeric medicine ball".  These are pre-measured doses that come in plastic balls -- which are sized anywhere from a golf-ball diameter to slightly smaller than a tennis ball -- that are under pressure and are easily hooked up to the same "port" that Lisa has in her chest that is used for most of the chemo treatments.  Lisa first uses a pre-measured syringe (no needle) at pushes saline through her port attachment, and then attaches the ball's tube.  The ball will deflate like a balloon (though very slowly) and deliver the medicine over a range of 30-60 minutes, but Lisa is able to move around the house and do whatever she wants by just tucking the ball into a pocket or keeping it next to where she's sitting or laying.  When the delivery is completed, she unhooks it, and then flushes the port again using another pre-measured saline syringe, and then finally flushes the port with Heparin which keeps it open and unclogged.  She's become quite adept at it.  If you want to see a demonstration of how it's done, click here.

Monday, August 26, 2013

Blood tests today show worsening red cell (anemia) and white cell (immune system) blood counts.  Other elements in her blood count are also not where they need to be.  Lisa got another white cell booster treatment today and will continue her home infusion of antibiotics.

Friday, August 23, 2013

Lisa's blood counts and condition have required her to go back to the cancer center every afternoon for additional treatment, and this will continue into next week.  At today's treatment, she also got an infusion of fluids and antibiotics because she was running a fever as high as 100.7F this afternoon.  She'll also be getting infusions of antibiotics at home starting tomorrow (Saturday) so she doesn't have to skip the weekend days.

Tuesday, August 20, 2013

Lisa had her blood tests and chemo this afternoon.  Blood counts are mostly stable... she's still anemic but not to the point of needing a blood transfusion.   She felt much worse than usual following the chemo treatment... usually the bad side effects don't hit until Thursday after a Tuesday treatment, rather than being so immediate.  She went to bed soon after we got home.

Sunday, August 18, 2013

Lisa has had a pretty good weekend, though by evening each day she's been very fatigued and wiped out. She hasn't had problems from the Neupogen injections, but we're presuming that her immune system is still low and are avoiding crowded places.  Lisa has blood tests and chemo scheduled again for Tuesday afternoon.  She will have the following week off from chemo, and her PET/CT scan on September 3rd.

Thursday, August 15, 2013

When Lisa has a Tuesday chemo treatment, we normally expect the side effects to be their worst on Thursday afternoon and evening.  Lisa didn't have that happen today, so we were pleasantly surprised and grateful.  However, they merely hit a bit later than usual, coming on around 10:30pm with her really feeling poorly.  We're hopeful that they won't last long, but if they're hanging on tomorrow afternoon when I take Lisa for another Neupogen injection, they can also give her an infusion of steroids and possibly some fluids to help her feel better.