Another setback

Lucy's stomach issues are a result of one of the cancer growths pressing against her small intestine. She has had a stubborn growth in her lower left abdomen since her debulking surgery. That growth has gotten a bit larger. So while she does not have a full mechanical ileus (intestinal blockage due to an object), she does have a partial ileus. The course of action is to keep on the Hexalen and see if it starts shrinking the tumor.

This setback is still not a reason to hit the panic button. It's still too early to tell how this will resolve. We all need to stay positive for Lucy. She's got the heart of a warrior and a lot of untapped sisu yet. Her clotting problem seems to be resolved which is a huge step in the right direction.

Tomorrow she goes in for a two bag transfusion because her hemoglobin was 6.4. She has to be at Fairview Southdale at 8:00 am. She did not have to get one tonight because her hemoglobin was over 6.0. It's nicer driving her home at 1:30 pm than 2:30 am.

Lab work shows no gastrointestinal infection, which is a good sign. She is still taking Pradaxa and Hexalen. After two rounds of nausea late last night and early this morning, her oncologist had her taking Compazine every four hours to see if that helped. It didn't help much. She will be switching to Ativan which should provide better relief for the stomach issues. Ativan was originally developed to alleviate nausea and has a bonus of being an anti-anxiety drug.

We tried a couple simple home remedies that would not impact her medications. I found some ginger ale that has about 1 oz. of ginger per 12 oz. bottle called Reed's Extra Ginger Brew at Byerly's in Edina. Most ginger ales use a tiny fraction of that for flavoring. Ginger is supposed to have properties that soothe stomach problems. It seemed to make her even more queasy. I like it so at least it won't go to waste.

She tried applesauce for lunch yesterday and wound up with a very rude and quick upset. Apple pectin is another food stuff that is supposed to help with stomach upset. Ensure and Activia seem to be the only things right now that don't cause issues. She tried a couple unsalted top saltines (sounds like an oxymoron, doesn't it) and they do not seem to help though she tolerated them well. She is drinking about a pint of Gatorade or Powerade a day to keep her electrolytes up.

Yesterday and today were  more typical gray and slightly drizzly March days, albeit about 20°F warmer than average. Tonight is supposed to bring more rain. We are in a moderate drought right now, so the rain is welcomed. The frost is out of the ground and the rain can actually soak in. Most of the lakes in the Twin Cities metro are reporting "ice out" which is almost a month early. At least the flowering shrubs like the weather:

The warm weather and rain kicked our forsythia bush into gear.

And the winner is...

Pradaxa (the pills)!

Dr. Thurmes told us that Lucy will be going on Pradaxa twice per day for her clotting problems. He wanted something with a shorter half-life in case she starts getting the serious nosebleeds again. Pradaxa has been approved for DVT therapy in cancer patients in Europe. FDA approval is pending, but it can be legally prescribed for Lucy's situation.

Lucy's hemoglobin was at 7.2 and she received a one unit transfusion. Her IVs are disconnected. She had two long walks today while still tethered to the IV tree. Her longest walk came after untethering.

As of right now, the only thing that would keep her in the hospital is a fever spike higher than 101.5° tonight. Her pain management is fine. She started her oral antibiotic. That will be twice per day for a week starting tomorrow. The pills are very large uncoated capsules, so we will split them so she has an easier time swallowing them.

Lucy heard from Steve, Julie and Suzy today so she got to tell them about her imminent release. The nice thing is the pace here has slowed down.

March came in like a lion (in a good way)

Lucy had a very busy day with all the people in and out to check on her.

Dr. Dettis (infectious disease) was by and told her he was better than 90% certain her fevers and leg redness were solely from the clots, but he wants her to be on antibiotics for another day or two. That was reassuring for her to hear.

One of the hospital chaplins stopped by, and then Dr. Thurmes (hematologist) was by to see how she was doing. Unfortunately her hemoglobin was at 7.1 so she received one unit of blood just before going to IR. He feels the Coumadin and Lovenox are not working and had two other anticoagulants in mind. One is Pradaxa, which is a pill. The other is a once per day injection which she couldn't  remember. We are hoping Pradaxa is a workable solution. Dr. Thurmes had a couple of areas he needed to research first.

Her TPA procedure was delayed because of a couple higher priority cases. She was originally scheduled for 8:30 and finally went down at 12:45. The procedure was done by 1:15. She no longer is on TPA and they can stop doing the neurological tests in another four hours. She should be able to get more sleep tonight and have fewer interruptions.

She did have to have her arm IV access changed. Getting a different one in was very problematic. Her arms have really been poked. Certain drugs cannot be administered into a port, and her antibiotics are all incompatible with heparin.

Julie called tonight and like last night didn't get much time to talk to Lucy. The arm access IV adventure was just beginning.

Lucy got to sit on the edge of the bed for over a half hour. She even managed to stand up before getting back into bed. Tomorrow she will get out of bed and go for some short walks.

Getting the TPA catheter removed is a step towards going home. The next two steps are getting her off IV heparin and letting her leg heal a bit more. Getting the heparin level in line will probably be the most difficult given her past experience. We still don't have a firm release date.

Keep your fingers crossed, and thank you for all the thoughts, prayers, positive energy and good wishes!

Holding pattern

So much for Lucy's heparin staying in the therapeutic range. She has had two adjustments and boluses today and will have a re-test at 9:30 pm tonight. It sounds like she is close to where they want her. The tricky part is having her stay in the therapeutic range for a couple days.

Her nosebleeds have stopped, but Dr. Thurmes is very reluctant to run a TPA catheter in her leg. The TPA would speed up getting rid of the thigh clot. Right now she has to stay the course. Perhaps that could change the longer she goes without a nosebleed. Right now she is dabbing saline gel in her nostrils every four hours and that seems to be working.

The two unit transfusion helped a little, but Lucy's hemoglobin was only at 7.9 today. More than likely she will need a transfusion tomorrow or Wednesday. We have not heard how her white count or platelet count were faring.

She has still been having fever spikes today. Her worst one was 102.8° which was taken down with Tylenol and cool washcloths on the forehead. There is still no indication of an infection. The fevers break within 30 minutes.

One nice thing was she got to use a shower today. The disposable washcloths are nice, but having some independence is nicer. She also got a birthday rose from one of the floral shops today. That was a nice present.

It's still wait and see. A lot depends on how fast her body starts wearing down that clot in the thigh. We have no idea how soon she will be going home. It's frustrating, but it is what it is.

Thank you so much for caring! Your comments are like her getting a Get Well card without having to wait for mail delivery.

Land of transfusion

Lucy's hemoglobin was at 6.0 and her platelets were at 50,000. Dr. Nashawaty had rounds this weekend and he mentioned the irony of keeping Lucy on heparin but also having to transfuse platelets. Her Alimta treatment probably caused the platelet count drop and may be contributing to the hemoglobin level being low.

On the plus side, her heparin is in therapeutic range. She will be in the hospital until at least tomorrow. One of the criteria for release is getting her off IV heparin. Our guess is they would also like to see any risk of infection in her leg eliminated and a noticeable improvement in her leg. It appears her leg is getting a little better. Like her last hospital stay, this will be a day-by-day event.

Today saw a steady stream of nurses and nurses assistants in and out. Lucy said one of her arm blood draws was at 3:00 am this morning. Her port has heparin in it so certain blood tests must be done via her arm.

Lucy's appetite is still good. I went the to cafeteria and picked up a grilled chicken sandwich for lunch. She asked to sample it and wound up eating the whole thing.

Steve and Liz came by this morning and brought cookies. Suzy was by this afternoon and left a stuffed snowy owl and a couple magazines. Julie called to see how Lucy is doing. We also appreciated all the great notes from everyone. Lucy and I do read the comments left in the group or in the blog, and we thank everyone for their words of encouragement.

We're hoping her heparin stays in therapeutic range tomorrow. That will put her one step closer to going home.

I found this scrub top in the gift shop. Lucy wants to see it when she is more mobile. I'm sure she will get one.

Suzy brought along a new friend for Lucy

Blood, sweat and tears

We know that nosebleeds are a side effect of blood thinners. Lucy had one that lasted for almost 45 minutes. She had another this morning that was done in about 10 minutes.

We arrived at Fairview Southdale IV Therapy at 7:30 am for her transfusion. The type and match took a little longer than usual, so her transfusion started at 9:00 and was done at 12:45.

She is still really tired. Last night she had problems sleeping and woke up several times. Now she's home, warm, fed and relaxing. Her leg isn't quite as sore as yesterday and the swelling has abated somewhat.

Lucy's next blood test is Monday afternoon. There may not be another update until then. In the meantime, give your loved ones a hugs from us and thank you for your support!

Down to once per day

We started today with about two inches of snow. That is normally boring news but this has not been a typical winter. This stuff was like the mashed potatoes served in the school cafeteria. The snow blower had problems with it because the discharge chute kept plugging. I think the snow lovers might be disappointed with the stuff, too.

Lucy's leg puffed back up a bit by almost 2 cm though her pain is about the same. She is really run down today. We had been suspecting her hemoglobin was dropping and it has. She is at 6.8. Her two unit transfusion is scheduled tomorrow at 7:30 am. It will probably take four hours to complete.

She also has to change her injection schedule before the next labs. We were targeting her injection for around 6:00 pm. This would avoid conflicts with work schedules, dinner and TV. Now she is to get her injection at 11:00 tomorrow and work towards 10:00 by Monday's lab appointment. The lab is also getting moved to 4:30. Of course she's going the be at Fairview Southdale IV Therapy at 11:00 tomorrow.

One thing we are happy about is she is down to daily injections rather than twice daily. We also enjoyed Julie's stew tonight. OK, enjoyed is an understatement, devoured is more like it.

 Here's hoping we have a dull and boring day tomorrow.

Room with a View

I have been parking in the Skyway Ramp and I walk past this stained glass panel every day. The flash on my phone's camera causes a lot of flare. The gnome is not lighting flatulence (though he looks guilty) and the owl is not looking for the culprit.

Lucy took a short walk this morning. It helps clear the fog of the pain pills. Her leg color has gotten noticeably better in the past day. Her right calf circumference is within 3 cm. (about 1.2") of her left calf. She says her ankle is stiff but is getting a bit more range of motion. Lucy has been working on her physical therapy exercises. Her Braden risk bracelet was removed because she is more active and her skin can air out.

Dr. Singh from Minnesota Oncology came by. Lucy was moved back to 8^th floor this afternoon. Her hemoglobin dropped after yesterday's increase so she will be getting a two unit transfusion. This means the four transfusions she has had since being admitted have required eight units of blood. She will be here until Monday at the earliest. The rest of the blood work sounded OK. Her Coumadin dosage was dropped to 2.5 mg and they did not have to administer a quick "blast" of heperin (called a bolus). We hope this means she is getting close to being removed from the IV heperin and her Coumadin dose is getting set.

I did get to take Lucy to the Meditation Sanctuary before she was moved. We used a wheelchair because it was a quick trip. She liked the fireplace and water feature. Changing her scenery also helped.

The view from her room is great. For those of you in the Twin Cities area, she overlooks Crosstown and France Ave. The fog lifted and the sun came out and we can see all the way to Highway 100.

Lucy's birthday is tomorrow and she will be spending it in the hospital. I'm grateful for getting to celebrate another birthday with her! I do wish she could have been released today. Comments are working, so please feel free to send her birthday greetings tomorrow. Thank you so much for your support!

And on the seventh day...

Lucy's Coumadin dosage needs adjusting upward, so she will be here at least one more day. Unfortunately, her hemoglobin dropped from 7.8 to 6.1 so she needed a two unit transfusion. Lucy's birthday is Sunday the 5^th and I would love to see her home by then! It is a day-by-day holding pattern.

Molly, Dr. Nashawaty and Jackie from Minnesota Oncology were by to see her progress. Acute anemia can show up in patients receiving chemo. Lucy was originally scheduled for her next Alimta treatment on Thursday, February 2^nd. The treatment has been moved to February 16^th. Her body will get a little more chance to recover. Her white is stable and in the normal range, and her platelet count is normal and stable.

So maybe today didn't start great, but there is still good news. Molly noted that Lucy's calf skin is less taut. It no longer looks like it is going to split open. She still has quite a bit of swelling in her right ankle and a slight amount in her left ankle. The left ankle swelling will reduce as she becomes more active. Her right leg still cannot be massaged and they can't put a "puffer" on it because there are still a couple small clots. They do not want the clots to dislodge and start travelling. A "staycation" is good enough for the clots.

Lucy only needed one Dilaudid shot last night for pain. She is taking oxycodone tablets to manage pain. Her pain pump was removed last night.

A Physical Therapy specialist came by this morning and checked Lucy's strength and range of motion. She also had Lucy do a series of simple exercises that can be done in bed and left a booklet detailing how to do the exercises. Lucy is supposed to do them twice a day.

An Occupational Therapy specialist came by about an hour later. She assisted Lucy out of bed. Lucy managed to walk around the bed. Lucy's pain doesn't increase very much when she puts weight on her leg. Her ankle still has a limited range of motion so getting her foot flat on the floor is a challenge. After a couple minutes, she can stand flat footed. Walking is very slow. She is not unsteady on her feet. Lucy has surprising physical strength for someone so petite. The goal is to keep her from losing strength while her leg gets better. She will try using a walker tomorrow.

Give your loved ones a hug from us, and thank you for your support!

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!

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!

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!

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 4^th. Her next scheduled Taxol/Avastin treatment was scheduled for January 5^th. 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 12^th.

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 12^th, she had a blood transfusion on January 13^th. The Alimta treatment was rescheduled for January 18^th, and the next INR test was January 16^th.

The January 16^th 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 25^th, 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 18^th. 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.