Tuesday, January 31, 2012

Slowly becoming untethered

Lucy is continuing to make progress. Her calf diameter is another ½ cm. (0.2") smaller. She no longer needs her pain pump and is taking oral pain medication. Her hemoglobin dropped very slightly from 8.1 to 7.8. However, her white count is now in the normal range. She still needs assistance getting out of bed and cannot walk more than a couple steps on her right leg. Physical Therapy will be by tomorrow to see what else can be done. Lucy would like to be more mobile. She has always enjoyed walking for recreation and exercise.

Lucy's friend Diane visited us this afternoon and brought a little stuffed "Hug Me" elephant. That really brightened Lucy's day. Yesterday's delay in Lucy's procedure precluded her sister Julie from coming to visit. Julie and Lucy have been on the phone a few times. Those calls also brighten her day. We know her sister Suzy is under the weather and we hope she feels better soon.

We don't have a firm idea of when Lucy can go home. The two main milestones are getting her off IV heperin and they would like to see her calf less swollen and red. Her Coumadin was restarted yesterday. Since the INR test will not be accurate, they are using a Chromagenic Factor X test instead.

Molly and Dr. Nashawaty from Minnesota Oncology checked in on Lucy this afternoon.

Lucy has a "Braden risk" bracelet. That means she is at risk for pressure ulcers ("bed sores" is the archaic term). She tries to change her position in bed regularly and so far has no signs of pressure ulcers. The risk will vanish when she is more mobile. It is not a cause for alarm.

Cellulitis is a concern. She is still getting Levoquin once per day as a preventative. And yes, the medical term for "preventative" is "propholatic". Lucy is not showing any symptoms of cellulitis.

That's all for tonight. We're very touched by the number of people reading the blog. It means the world to us!

Monday, January 30, 2012

Take 4

Lucy was initially scheduled for her procedure at around 8:30 this morning. An emergency case came up and she has been bumped for the time being. She has her Nook Color to help pass the time.

Her blood transfusion occurred without incident last night.

As part of her blood clot treatment, she has a simple neurological check performed every two hours, even at night. She says she falls back to sleep quickly afterwards.

A very large part of the hospital that is cell phone friendly and the patient rooms have WiFi Internet access. The IV Therapy area and Day Surgery suites still require cell phones be shut off, but WiFi access is allowed in those areas.

This might be a multiple update day. Bear with us.

UPDATE #1: Lucy was finally taken down to Interventional Radiation at 12:15 pm. Her procedures have been averaging a bit over two hours. So I was very pleasantly surprised when she was returned at 1:05! All the "plumbing" on her left leg is gone. She went from nine infusers plus her pain pump to two infusers plus the pain pump. There are some small clots remaining in her calf region but they are going to let those dissolve on their own. After four hours, Lucy should be able to get out of bed and walk a bit.

UPDATE #2: Lucy is restarting Coumadin tonight. She is also still getting heperin. They had to run an IV into her arm so they could administer some Leviquin (antibioic) as a preventative. The skin on her right leg looks like it has been sunburned. A skin infection called cellulitis may form if the antibiotic is not administered.

She still has a couple very small clots in her right calf, but Dr. Siddiqui wants to let the clots dissolve on their own. We know she will be in the hospital until at least tomorrow and until she no longer needs the heperin IV. Molly and Dr. Weinshel from Minnesota Oncology were by to see how Lucy was doing today.

Lucy did manage to stand up with some assistance and took a few small steps. She has been confined to bed since Thursday and her leg was kept immobile for a couple days. Her ankle was very stiff which hinders walking. However, she is noticing a little more range of motion in her ankle as time goes on. She had a large catheter inserted on the inside of her ankle. That also contributes to the swelling in the area. Her pain has dropped down a bit. She was grading herself on the 10 point pain scale at an 8. After her procedures it dropped to 5. Right now at 7:00 pm she gives it a 4.

Her calf circumference is another ½ cm smaller (about 0.2"). It doesn't sound like much, but it is getting smaller. Her thigh is still open and the color has nearly returned to normal. The bottom of her right foot has normal coloration instead of being very dark pink. The Doppler flow detector does not have to have the volume set to maximum just to pick up a faint pulse. Her right foot and ankle pulses sound as loud as the pulses in her left foot and ankle.

Lucy also got a fun little ride today. Even though she is a petite woman, she got to be in a patient lift and thought it was fun. The lift also ensured her weight was more evenly distributed. For us, the big plus is it helps prevent injuries to the care staff. Even a person of average weight can be difficult to lift and balance. Too many care providers are injured or disabled from an awkward patient lift.

We're hopeful of Lucy coming home yet this week. Thank you for your thoughts, prayers, love and support. You really help us get through this!

UPDATE #3: While we don't have a definite date when Lucy can go home, we did get some really good news about her Complete Blood Count (CBC) from tonight. Her hemoglobin went up higher than expected after the transfusion. Her white count is back in the normal range and there is still no indication of infection. It's nice to have a couple more victories!

Sunday, January 29, 2012

Rinse, lather, repeat

Lucy's third procedure took about two hours. She will need a fourth procedure tomorrow. There was clot material just under the sheath they put in near her knee. That sheath has been removed. Lucy will be here through tomorrow.

Lucy's hemoglobin is starting to drop again. After her transfusion on Thursday, it was at 9.8. Yesterday it was at 8.0. Today it is 7.3. She will be getting a one unit transfusion tonight just to bring it over 7.5. The anticoagulants and clot dissolving drug plus all the IV fluids she has had can "dilute" her hemoglobin levels.

There is good news to report, too. Her calf circumference is already 1 cm (0.4") smaller after today's procedure, though we could expect some fluctuation. The color is not so dark red and her foot and ankle pulses are louder through the Dopler flow detector.

Molly stopped by, and Dr. Thurmes visited about a half-hour later. Dr. Thurmes feels Lucy's mild fever spikes, occasional chills and slight low blood pressure (hypotension) is due to the clots, not an infection. Her blood cultures are still "unremarkable" which is great.

Please indulge me for a moment while I go off the subject of Lucy for a moment. In blog related news, comments work and we encourage you to use them. Blogger has had some issues with spammers injecting crap in the comments, so we will moderate comments.

For those of you who have a Facebook account, I have set up a "Journey of the Teal Owl" group. I am looking at using RSS Graffiti to automatically publish the blog posts on the Facebook group page. Bear with me on that.

In addition, those of you with a Twitter account can follow @tealowljourney. I will try to send a tweet when there is a new or updated post. This is all a work in progress and will be quite fluid for awhile.

Thank you for your patience! We are so grateful for all your love and support!

Saturday, January 28, 2012

Clotbusters III (without Bill Murray)

Because it's the weekend and people may be checking the blog a bit more frequently, I'll be updating this posting at least once more today.

Lucy had a fairly good night. She says she slept much better. The pain pump is knocking her pain back a bit. She was running a mild temperature which elevated her heartbeat slightly. Apparently that is a side effect of a DVT. Her temp came down and her heartbeat is around normal. She has been getting Tylenol to reduce her temperature. Her potassium level is back to normal. Her calf circumference has not gotten smaller yet. I don't know how quickly it is supposed to start reducing.

She was taken to Interventional Radiology at 9:00 this morning to have the catheters moved. The last procedure took 3½ hours. I don't know if this procedure will take as long.

UPDATE: Lucy was back in the room at 11:30 which is an hour less than her previous procedure. The reason the bottom catheter was shut off last night was a kink occurred. She may have kinked it getting situated to use the bed pan. Her right ankle is immobilized with an arm board as a precaution. To minimized potential bedpan problems she had a catheter inserted. Her bladder and kidneys are fine.

Apparently she had more than one clot in her leg, one in the thigh and at least one in the calf. That is not unusual.

As we get older our veins will start constricting and lose some of their elasticity. Lucy had a minor constriction in her thigh, so they did a balloon angioplasty and an AngioJet to open things up. Her thigh is looking a lot better and the redness is turning pink.

Dr. Thurmes stopped by and was pleased with her progress. He did order an antibiotic just to be safe. Molly from Minnesota Oncology also has round this weekend and stopped by to see how Lucy was doing.

She will need to have the procedure done one more time tomorrow morning at 8:30.

Friday, January 27, 2012

Clotbusters II

Lucy's procedure finished around 1:00. She was moved to the Surgical Specialties unit on third floor, so there goes the view.

They gave her a pain pump and she is already noticing a decrease in pain. This is the first time this week where her pain self assessment went down. The clot is being treated with a "clot busting" drug (alteplase)  in addition to a blood thinner (heperin). All the hardware look impressive: seven infusers and a pain pump. Two of the infusers were shut off after a couple hours, a clot buster and a blood thinner. We're hoping this is a good sign. Lucy will have the catheters moved tomorrow and her hematologist will be by on rounds, too.

Lucy was moved twice today. She is in a bigger room. The care providers have some elbow room now. She actually had some time to herself tonight. The fast-paced choreography of this morning has slowed to a very slow ballet. Now she'll get more of a chance to relax.

This does it for tonight. Thank you so much for your good wishes for Lucy!

Who you gonna call, CLOTBUSTERS!

Fairview Southdale's Oncology wing is on the top floor. Being eight floors up allows for some nice views. That's a nice little perk. We wish the skies would clear at night so we have a chance of seeing the northern lights before they fade.

This morning started with some hustle and bustle as Lucy is got ready to have the catheter procedure performed. There is some good news today.

I forgot to mention that when Lucy received her three units of blood, she received a diuretic called Lasix. Lasix is administered to help flush some of the excess fluid that builds up during a transfusion. The excess fluid can cause blood pressure elevation to unhealthy levels. If any of you play the ponies, you have heard that some unscrupulous owners used to give horses a Lasix injection before a race. An injected horse becomes several pounds lighter after multiple bladder voids giving it an unfair advantage. That's probably where the slightly vulgar observation involving a Russian race horse originated. One side effect of Lasix is it can reduce potassium level and Lucy's potassium is slightly low. They will address the deficiency with oral or IV potassium supplements. She also likes bananas and Gatorade which will giver her a slight potassium boost.

Lucy had ordered breakfast before she was told she was NPO. The Latin phrase Non Per Ora means nothing by mouth though sips water are allowed. She got to watch me eat her French toast and hash browns. I'll figure out a way to make it up to her!

Lucy has Blue Cross for her medical insurance. They have been wonderful once one finally gets through to a human. Dante must have foresaw Blue Cross's automated phone system and used it as the inspiration for the ten circles of hell in "The Inferno". The only thing missing would have been getting Heath Ledger in his Joker role to intone "Omnes relinquite spes, o vos entrantes" (Abandon [relinquish] all hope when you enter) when the system answers.

The platelet transfusion worked even better than expected. Her count jumped from 53,000 to 98,000. Dr. Thurmes was very pleased with that. He also noted that her white count also improved and that's something that has to come up on its own. After all the pounding her bone marrow took from the previous three rounds of chemo, perhaps her bone marrow is getting back to normal. That will bode well for her anemia if that is the case.

Her blood cultures still show no sign of infection after two days. While her leg is still very red and swollen, it is from the blood clot. The clot is bad enough to battle, she doesn't need a few hundred million microscopic critters playing rough and adding to her discomfort. The cultures will be watched for a total of five days.

She was taken down to Interventional Radiology for the catheter insertion at 9:30. The preliminary estimate is about two hours, mostly due to allowing the anesthesia to kick an and recovery time afterwards. Lucy is a little slow recovering from even local anesthesia. She is getting moved to a room in Surgical Specialties for at least one day. They want to keep very close watch on her to ensure the clot doesn't do something very unpleasant. The likelihood is very small, but there is still a risk.

I'll have another posting tonight. Thank you for keeping Lucy in your thoughts!

Thursday, January 26, 2012

Some steps forward, a couple sideways

Sometimes a journey has a few sideways steps in order to go forward. Lucy's blood clot is not responding as well as hoped. Dr. Thurmes, the hematologist, stopped by this afternoon. He wants to use a catheter inserted closer to the clot and use a stronger blood thinner. The catheter will be inserted tomorrow unless something changes. The process will take about two days and Lucy obviously will remain in the hospital until at least Saturday. He also ordered a head CT scan as a precaution.

One thing noted during her blood work is her white count and platelets are a little low. This is most likely from the Taxol used in the previous round of chemo. Because of the blood thinner that will be used, she will receive a platelet transfusion tomorrow.

Cancer can cause blood clotting problems. Lucy also has a blood clotting factor that was discovered during more thorough blood work and could put her at a slightly higher risk of recurrence. The factor also means a standard INR test may be misleading. There is a different clotting test that can be used.

Right now the focus is on getting the clot dissolved. Lucy will likely be on Coumadin for a period of time after she is released from the hospital. It's still too early to determine exactly how long. We did not get a chance to discuss her anemia, but that will be addressed in the near future.

The last sideways step is she is still having pain management issues despite getting Dilaudid in her IV. It does make her sleepy so she is getting rest.

Now on to the steps forward! Lucy's appetite is pretty good and her sense of taste is a lot better. The blood transfusion took several hours last night, but she did get all three units without too much drama. Her hemoglobin was 9.8 several hours after the transfusion which is a big step in the right direction. She has good color in her cheeks again. Her blood work did not indicate infection and her kidneys are working well.

It was a long night for both of us. Lucy managed to get more sleep than me. She will be getting her pain med in a few minutes and then I'm heading home. We're thankful for the steps forward!

Wednesday, January 25, 2012

Fill 'er up! No, not quite …

Today is getting longer than we expected. I'm doing this entry via my phone so please excuse the egregeous spelling mistakes.

Lucy's leg is about the same. The pain relievers zonk her out so she had some quality time getting reacquainted with the backs of her eyelids.

Lucy went to Minnesota Oncology to have an INR test and get a Lovenox shot. Tomorrow is the meeting with the hematologist.

She got the chills before the INR test. Lucy had a CBC test done in addition to the INR. Her hemoglobin was 5.5 which is very low.

After her Lovenox shot Lucy was sent to Fairview Southdale for a transfusion. Her temp is 102.8 so she is getting held overnight. They are starting antibiotics and doing a blood culture.

Her transfusion started at 10:00 pm when her tempo was 98.1. It was stopped at 10:45 when she went up to 102, then started again at 11:15 when it went down to 100.9.

Here's hoping tomorrow will go better!

Tuesday, January 24, 2012

Another day, another poke

Lucy had another Lovenox shot today. For those of you with some medical background, Lovenox is a SC slow-push injection. The ideal area for the shot is in the belly region. Cringe-worthy to be sure, but it’s also not as painful. Lucy has only mentioned feeling only a couple of the injections. You can’t begin to understand how much we appreciate skilled nurses!

Starting around Thanksgiving Lucy had noticed her sense of taste was getting impaired. We did have a couple unusual food experiences where she was convinced her taste buds were on vacation, but they weren’t (trust me!). By and large food she mentioned food not having much flavor, even spicy Asian and Mexican foods. Many people going through chemo mention food taste changing and some develop food sensitivities. The past few days, Lucy is noticing food tasting better and her appetite increasing. That is good news!

Her leg swelling is slowly getting better and the coloration is looking a lot less “angry”. Her right ankle is swollen and not very flexible right now. It was swollen to the point tonight that getting a boot on was nearly impossible. She got around that by pulling the insert out of her Sorell boot so it could easily slip on. I though that was pretty clever! If our weather was still as mild as it was two weeks ago, boots would not be necessary. The Twin Cities area finally has a couple inches of snow on the ground. We’re thankful the temperature was in the +20°F’s today and not the -20°F’s we can and do get.

Lucy is out on disability for the next two weeks. This is not a bad sign. She has had a tremendous fight going the past few months and her body needs a rest. Walking is still very painful and driving is out of the question especially with painkiller involved. She moved to a different cubicle at work after their reorganization and it means more walking for her.

The blood clot issue will resolve and her leg will get better. She is anxious to start using our treadmill and rebuild the strength in her leg and to be her usual independent self again.

Monday, January 23, 2012

Start of Chemo Round Four

Our society places a great deal of celebratory value on the passing of the old year. We look back on the old year and hope the new year is better. With as bad as 2011 was, 2012 has got to be better, right?

The new year did not start out as nicely as hoped. Because there was a slight increase in Lucy’s  CA125 level, Dr. Boente wanted labs done a couple days in advance. A CA125 test takes about two days to complete. The labs indicated her hemoglobin had dropped to 6.8. Lucy needed a transfusion on January 4th. Her next scheduled Taxol/Avastin treatment was scheduled for January 5th. This would have been the first treatment of the fourth cycle.

After Lucy’s CA125 level dropped dramatically during the second treatment cycle, it had been steadily increasing since. She was also having leg pain and stomach problems. Lucy’s cancer  had become Taxol-resistant and platinum-resistant. The Taxol/Avastin treatments were cancelled and she was to start Alimta instead. Alimta is given once every three weeks in a very short infusion. Her first Alimta treatment was scheduled for January 12th.

While Dr. Boente was examining Lucy, he checked her legs to determine why they were painful. He did a Homans’ test on both legs. This involved Lucy sitting at the edge of the exam table with both legs dangling over the edge. He then supported her ankle with one hand and started pushing her foot back towards her shin. The left leg was painful while the right leg was not.

Because Homans’ test not a good indicator of a deep vein thrombosis (DVT, a blood clot in a vein deep under the skin), Lucy was scheduled for an ultrasound on her left leg. Fortunately, Suburban Imaging is one floor down from Minnesota Oncology. She had an appointment for that afternoon. The ultrasound determined there was a clot in her left calf. So it was back upstairs so Lucy could get a Lovenox shot. Lovenox is an anti-coagulant drug. It is not designed to dissolve an existing clot. She was also given a prescription for Coumadin, another anti-coagulant. The Coumadin would start after a series of four daily Lovenox shots.

Coumadin is a fickle drug to properly dose. It requires fairly frequently blood testing. The test test is known as PT/INR, is more commonly called an INR test. It’s short for Prothrombin Time/International Normalized Ratio. The desired result should be between 1.0 and 2.0. Lucy’s was at 8.9 after two days on Coumadin. Her Coumadin was reduced from 5 mg to 2.5 mg until she was retested in two days. It was also note that her hemoglobin dropped below 7.0. So instead of getting her Alimta treatment on January 12th, she had a blood transfusion on January 13th. The Alimta treatment was rescheduled for January 18th, and the next INR test was January 16th.

The January 16th INR test was better, 3.9. The Coumadin dose was cut again, down to 2 mg. When her right leg was examined, she was told to get an ultrasound on the right leg.

The ultrasound determined there was a clot in her right thigh. Her Coumadin was discontinued immediately and she received a Lovenox shot. The Lovenex shots will continue daily for a week. On January 25th, she will see a hematologist. The hematologist meeting will determine her Coumadin therapy and try to determine the cause of her chronic anemia.

DVTs are incredibly painful. Lucy’s right leg ballooned up to twice its normal size but is slowly returning to normal. Walking is still very difficult.

There is some good news despite all the speed bumps she encountered. Lucy did receive her Alimta treatment on the 18th. Unlike her previous rounds of chemo, Alimta is a quick one hour infusion given once every three weeks. Her previous round of treatments took between two and three hours each week except for her “off” week. She is not experiencing any side effects from it. Having to make fewer trips for chemo is going to be a big plus.

It’s been a frustrating start to the new year. We’re both trying to stay positive. We may not say it enough, but thank you for your concern, prayers, support and the love you have for Lucy.