Today was "one heck of a day." On the way to Norris, Barbara had another of her severe headaches, accompanied by nausea. In the Day Hospital, the nurse was alarmed and called Taline. Taline worried that Barbara might be bleeding in the brain, or that the cancer had spread to the brain. She immediately ordered an MRI of the head.
Norris went into high gear and obtained advance approval from Blue Cross, but unfortunately specified University Hospital instead of the facility normally used by Dr Lenz. After a shuttle in a bus which is equipped to handle a wheelchair, we checked in at University Hospital. Due to the mix-up, they were not expecting us. Luckily, the nice people in Admitting smoothed out the difficulties, and, after some uncomfortable waiting, Barbara got her MRI. The report beat us back to Norris: totally normal - no significant bleeding in the brain. Taline was still concerned that a small bleed might only show up in a cat scan, and she ordered one ASAP. Then she admitted Barbara into the Norris Hospital. She wanted to have Barbara under supervision until they find the cause of the head pain.
Shortly after arriving in her hospital room, Barbara received word that the cat scan was also negative. This rules out any bleeding and any cancer in the brain. At this point the attending physician reviewed Barbara's history, along with detailed questions about the head pain. He suspects migraine headaches for several reasons: 1) during the headache she is sensitive to light especially flickering light, like the computer screen, 2) the pain causes her entire body to feel unwell, and 3) she suffered from migraines up until she went through menopause. To test his hypothesis, he prescribed two migraine medicines (Immatrex and Ergolz) to be given sequentially to see if either medicine relieves the pain.
Just before I left for the night, Dr. Lenz came by. Since this ailment is out of his area of expertise, he arranged a consultation with a neurologist tomorrow morning (Tuesday). We asked if Barbara's elevated blood pressure (172/99) might be a cause of the headaches. He replied that if the blood pressure had been really high (like 220/140) he would have suspected the Avastin, which has been known to increase blood pressure. But Barbara hasn't had Avastin for two weeks, and he feels that the medium-high b.p. is more probably a side effect of the terrible pain, rather than being a cause of the pain.
I will return to the hospital early tomorrow. I fully expect that they will release her after the neurologist visit, unless they are still worried about the pain.
Today Barbara continued to have continuous headache pain; much of the time it was severe. She was seen by the neurologist, who did an extensive physical exam. Included was inspection of her retina via a lighted scope. He noticed some evidence of the retina being pushed from behind by pressure. This may be a high pressure in the spinal fluid. Such a pressure can come from inflammation, or pressure from growing scar tissue from her surgery, or a combination of drugs, especially Avastin. The definitive test is a spinal tap, during which they measure the pressure and draw some fluid to analyze the cells for inflammation or cancer. We agreed to proceed, but he must wait for her blood to thicken. Since she is taking Warfarin to thin the blood and prevent clots from her Groshong catheter (she had clots a few years ago), her blood might not coagulate properly during the spinal tap and there could be a bleeding problem. She has been taken off of Warfarin, and is receiving Heparin to prevent clots. Heparin is short acting, and its effect wears off quickly. They would stop Heparin shortly before the procedure. So Barbara must wait for her INR to drop to 1.5 from its normal therapeutic level of 2.0 to 3.0. This could take several days, but they may speed it up by administering a blood product called FFP, which thickens the blood instantly, but only lasts an hour or so - just long enough to complete the procedure.
This evening Barbara's headache became more severe, almost unbearable. It started radiating down her right neck, near the carotid artery. They put her on a Morphine pump, and she can push a button whenever she wants more relief (but it is limited to one dose every 15 minutes). With the Morphine, she started mumbling and had difficulty saying a complete sentence. This is exactly what happened after her last surgery when she needed a Morphine pump. Around 9 pm, they gave her an anti-anxiety medicine, and she relaxed, and her speech became more normal. I took that as my queue to leave and get some rest before returning for a big day - hopefully including the spinal tap and her release from the hospital.
Barbara is a lot better today. The pain medicines are controlling the headache and she varies from a moderate headache to none at all. The big problem now is the nausea. It comes in waves, every two or three hours. She cannot even rotate her head without feeling like she needs to vomit. They are giving her intravenous Zofran and Regulan with some success.
The spinal tap is scheduled for tomorrow. To thicken the blood further she is being given Vitamin K. Tomorrow, three hours before the procedure, she will receive FFP to further increase the coagulation capability of the blood.
She is resting comfortable in her hospital room. Michelle is with her. Needless to say, Barbara is eager to be out of the hospital and back at home. When that happens will depend upon the results of the spinal tap. As Dr. Lenz says, "Either result is bad news." If she has high spinal pressure, then they need to determine what is causing it and how to control it. If the spinal pressure is normal, then they must dig deeper to find the cause of the headaches.
Barbara's headache came back this morning. Apparently the Depacon medicine for migraine relief was driving up her INR, i.e. it was thinning out her blood, when we want it thicker. When they backed off on the Depacon, the headaches resumed. She suffered the entire day.
At 2 p.m. the spinal tap began. Unfortunately, the young doctor doing the procedure was not very skilled, and she fiddled around for thirty minutes until she gave up. At one point she hit the spinal nerve, and Barbara received a shock that went from her right hip down to her toe.
The expert was called in. Barbara was transported in her bed down to the radiology department where Dr. Ahmadi performed the procedure without a hitch. He allowed me to observe, and I enjoyed watching the hands of a master, along with his narration of the procedure. He had told me before the procedure that he doubted that her headache was from too high a pressure in the spinal fluid. His measurement confirmed that Barbara's pressure is normal: 12 cm of water. Normal is from 10 to 20. So we will need to look elsewhere for the source of the headaches. Three vials of spinal fluid were collected for a bunch of tests. We should hear some of the results tomorrow.
Meanwhile, a reluctant Barbara remains in the hospital. At least they are working on finding an effective medicine for her pain - we couldn't deal with the pain at home.
Michelle and Brent arrived late afternoon. They had spent much of the day at Cedars/Sinai Hospital where Brent's mother had surgery today to improve the circulation in her right leg. Barbara will be in good hands with Michelle and Brent by her side.
Barbara was feeling much better today. She only felt headache and nausea when she was active, like going to the bathroom and brushing her teeth all at once. She was supposed to be released from the hospital today, but it didn't happen due to some miscommunication. Pain Management visited her at 8 am and verified that the pain was being well controlled by the continuous Morphine drip. Later in the day, the oncology team decided to send her home. But they didn't realize that she was still receiving pain medicine intravenously. They suggested that her regular pain medicines could be adjusted to compensate for stopping the Morphine drip. At this point, I hurried to contact Pamela, of Pain Management. She was furious, and immediately stopped the release. As she rightly summarized, "If the oral meds are not enough, and she is at home on the weekend, what will she do?" There is no emergency room at Norris, and she would wind up at another hospital where they would have no idea how to treat her.
Needless to say, Barbara was upset. Dr. Rupani, one of the doctors on the oncology team, caught me in the hallway and asked me to break the news to her. Clearly, he knew what her reaction would be. She was most upset that the two teams were not communicating, and that it was necessary for us to fill in the gap. She was ready to stomp down to the nursing station and give them a piece of her mind, but she pooped out part way down the hall. Later, she discussed the failure with one of the doctors, who finally admitted that she (the doctor) had made a mistake in not reading the chart (about the pain medicine), and not conferring with Pain Management.
Around dinnertime, Dr. Lenz came by. He agreed that there had been a system failure. While he was visiting, Dr. Rupani walked past Barbara's room, saw Lenz, and clearly did not want to talk with Lenz. I shouted, "Hi Dr. Rupani!" At that point, he could not escape. Dr. Lenz picked on him unmercifully, "Just what is it you people DO all day?" The best humor is that which has a little truth mixed in.
The plan now is to see how Barbara fairs without the Morphine drip. If she is OK for 24 hours, they will probably release her. We are hoping to have her home tomorrow.
Barbara is finally home. It seemed to take forever for the discharge orders to be executed, but they finally released her at 3 pm. She was dreading the drive home, and I did my best to minimize the motion. But she still became nauseous and was bothered by pain, especially in her side and back. The back pain may be lingering effects of the spinal tap procedure, given that the novice doctor spent 30 minutes poking around without finding the spinal column.
Once at home, Barbara fell into bed feeling awful. I gave her a Zofran for her nausea. What a delight to be able to take medicine without all of the delays that we experienced at the hospital when trying to get her the needed relief. Soon Barbara was feeling better, but very tired. She had gotten very little sleep in the hospital with people waking her every few hours.
Sherri came by and stayed with Barbara for a short while, and I went to the pharmacy for her new medicines. She was prescribed two blood pressure drugs: Norvasc, which is a calcium channel blocker, and Lotensin, an ACE inhibitor. She also received Depakote, a drug for migraine headaches.
Tonight we are both looking forward to a long uninterrupted sleep.
Barbara has been making very slow progress. Yesterday, I felt confident in her ability to care for herself, and I returned to work. She continues to have headaches, though not so bad as in the hospital. She also needs nausea medicine frequently. She finds that she can not move her head around rapidly without feeling sick. She is also not sleeping very well; she has learned that the Depakote medicine for migraine has the side effect of disturbing the sleep. Last night she was awake until 3 am, and woke up at 6 am. She then fell asleep until 10 am. She can't get much rest on that schedule.
Barbara has a shirt that says, "I have chemo brain - what's your excuse?" She worries that the many chemo treatments have indeed affected her. She cites how frequently she goof up the Sudoku games that we play with Sandra - but I tend to think that she is just careless while trying to beat us. An incident happened this week that really scared her. Sherri had told Barbara that "Beth's father was in the hospital for clogged arteries, and could have died without treatment." Barbara missed the word, "Beth's", and assumed that Sherri was talking about her biological father Frank. Barbara passed the story along to Sandra, who called Sherri for the details. Sherri did not connect the story with the news about Beth's father, and denied saying any such thing. When word got back to Barbara, she went "off the deep end", assuming that her mind had indeed been fried. She called Norris and left a message for Taline, worried that the current medications may need a change.
When Sherri came by to do her taxes, we discussed the confusion, and Sherri realized what had happened. Barbara was now embarrassed, and wished that she had not been so quick to call Taline. We probably will never hear the end of this from the good people at Norris.
Yesterday, Michelle, Brent, Jessie, and Kanan came over with dinner. We all enjoyed the pasta dinner, with a great spinach salad. Kanan loves to watch dancing, and we had saved a segment of "Dancing with the Stars" in which some children were doing exotic ballroom dancing. Kanan was enthralled, as were we all. But when the adults came back on the program, Kanan became more interested in the digital recorder's readout than the dancer's performances, and we turned off the TV. All of us played the card game Old Maid, and everyone enjoyed the friendly competition. Barbara's spirits were uplifted - she loves to be with the grandkids when they are having fun.
To give you an idea how bad Barbara felt with the headache in full bloom, click here. This was just before going into the hospital. We needed my big hat to hold the ice bag on her head.
Barbara has been making steady progress. She still must avoid rapid head movements to keep from becoming nauseous. The headaches are also improving.
She was dreading the drive to Norris on Monday, but she was fine. We met with Taline and went through a long list of topics. Our biggest concern is with the Depakote drug, which is giving Barbara terrible diarrhea. Taline wants us to consult with the neurologist. The neurologist, Dr. Sanossian, also wanted to see Barbara soon after she left the hospital, and he gave her his business card telling her to call for an appointment. Well, Barbara called the number and reached a rude lady at his part-time office in County Hospital. Sanossian's regular office is not at County Hospital, and we can't figure out why that number is on his card. The rude lady chided Barbara for calling and said that Barbara is not Sanossian's patient since she had not seen him at the office in County Hospital. Barbara began to cry and the lady told her to stop crying, "The Lord will not give you more than you can take, so get over it." She gave Barbara an appointment for June 2. This is ridiculous, since the medicines prescribed by Sanossian will run out two weeks earlier. Barbara later received a call from another lady who was much more compassionate, and we now have an appointment with another neurologist tomorrow (Thursday). We will see how things go.
On Sunday, we celebrated my 66th birthday. Michelle, Brent, Jessie, and Kanan were here and supplied pizza and lots of wonderful chocolate treats. Here we are feeding our faces. Kanan spent an hour in the pool. Jessie showed us her school grades: she earned four A's and two B's - a great GPA, if you ask me. Sherri was busy in the kitchen making a big batch of spaghetti sauce for subsequent meals.
On Thursday, we saw the neurologist, Dr Tseng. There was a lot of stress preparing for the appointment. Barbara collected MRI and CAT scan results, all of her medicine history, and lots of supporting documentation. She was still trying to sort it all out, as we were driving to USC.
We are very happy with Dr. Tseng. She took Barbara's history and current ailments. Most exciting to us was that she put each of the CDs from the MRI and the CAT scan into the computer and narrated her "trip" through Barbara's brain. She said that there is no sign of pressure from blood or spinal fluid. Moreover, there are no lesions or tumors, no sign of a stroke in Barbara's past, and no signs of Alzheimer's disease (Dr. Tseng's specialty). She doubts that the Depakote or the blood pressure medicines would be causing the current bowel issues. Nevertheless, she feels that it would be wise to taper the Depakote slowly while watching for a return of the headaches. Long-term (6 months) use of Depakote can sometimes affect the liver, and Barbara already has a compromised liver.
When we returned home, there was a message on our phone from Dr. Sanossian that he was back in town. We would have tried to see him, but in retrospect, Dr. Tseng gave us the information that we needed.
Friday, we went to Pain Management. We always enjoy being with Pamela and Dr. Nemat. No significant changes were made to Barbara's pain medicines. Barbara related that she is taking less of the Fentora since the abdomen pain is less frequent. She asked if the bad headache could have been a withdrawal symptom from the Fentora. They believe that Barbara's small dose could not cause withdrawal symptoms. (But that's what they said about the Cymbolta, and Barbara's research showed otherwise).
On the way home, we stopped at Trader Joes for some groceries. Barbara was feeling weak and ill, and Frank, one of the employees, noticed and began to help her. What a compassionate man. Later he bright her a bouquet of flowers, hoping to brighten her day. Frank, God is watching.
Late Friday, we attended Kanan's all-city school track meet. Here he is waiting for his event with his school. Here is the start - Kanan is in front of the two men with yellow shirts. I missed the finish photo (digital cameras are lousy for rapid photos). Here he is with "Ma", receiving some TLC when he missed an award due to a mix-up at the finish line. Later, when Michelle served him watermelon, he got over the disappointment.
Barbara has been feeling better. The migraine headaches are gone. Let's hope that they stay away. The pain in her side is now quite rare, perhaps once every few days. She is taking the Fentora so rarely that her sensitivity to it is increasing. Originally, the drug took effect in ten minutes. Then, when she was taking it frequently, we had to wait thirty minutes for relief. Now she is back to the ten-minute sensitivity.
She is still having some issues with the bowels. She is slowly tapering off of the Depakote, and we are hoping that her bowel problems will taper off as well. She has noticed a swelling in her ankles with red dots on her skin. It looks like poison oak, but it doesn't itch. It is worse on the left ankle. Barbara remembers from her nursing days that dissimilar swelling in the ankles indicates some heart problem, and she knows that she has some atherosclerosis. There's always something new to worry about.
Last Sunday (a week ago), Conrad brought Jessie and Kanan over for a swim. They were joined by Max, their cousin who lives in Lake Arrowhead. Barbara enjoyed being outside watching them cavorting in the pool.
On Friday, Barbara and I went shopping at Costco. That's an ordeal for anybody, and especially for Barbara. After two hours, she had filled the cart and was exhausted. But she was pleased that she could shop for staples just like normal.
Today we saw Dr. Lenz. We had a long discussion about how to proceed. He pointed out that chemo is usually given for six months after surgery. In Barbara's case, he continued chemo because there were still indications of disease. Now, however, the cat scans show no progressing disease, and her CA19-9 is 39. (The CA19-9 is fluctuating so wildly that it can only be the result of metabolic changes, and is no longer a reliable indicator of the cancer). If he continues chemo, there is a risk of the chemo drugs doing more damage than good. They can also lose their effect as the body becomes accustomed to them. He left the choice to Barbara:
Barbara told Dr. Lenz that ironically we had just informed the Race Across America that we could not officiate this year. Lenz argued that the withdrawal is a wise decision regardless of her stopping chemo. He doesn't want her overdoing herself at the prerace festivities, and he doesn't want me to be away for three weeks leaving her here alone.
I'm hoping that some of the various ailments go away as the chemo is dissipated from her body. I especially would like to see her nausea under control so that we can go on outings with the motorhome.
Having stopped the Depakote, Barbara's bowels have recovered, but early last week she started having constipation. So she resumed the Colace and Miralax. Then, on Saturday, she was hit with stomach pain. Over the rest of the weekend she had diaherria. It's such a fine line keeping the bowels balanced after being hammered by chemo for all these years.
Late Saturday, while suffering with the bowel problems, she bit into some food and broke a tooth. The rear molar was left with a sharp edge which was cutting her tongue. At least the tooth itself did not hurt. Fortunately, she was able to schedule an emergency appointment with our great dentist Dr. Lad. Luckily she had an antibiotic which Dr. Lenz had given her for a future dental cleaning (there is a danger in having dental work when the immune system is compromised by chemo). She took the antibiotic, had the tooth fixed, and they squeezed her in for a dental cleaning at the same time.
On Sunday, I left for a quick visit to Sandra in Arizona. We had a great time and definitely ate too much. I even conned her into going to Harrah's Casino for a big brunch. It was great fun playing with her pet ferrets. Here is Rascal; the other one, Koda, is hiding. It was necessary for me to keep small things like cell phones out of their reach, since they steal and hide anything that they can carry. Sandra has straightened her hair, and it looks good.
Barbara doesn't sleep well when I am gone. Now that I am back, she is catching up - and so am I.
Last updated on Thursday, 5/15/2008 at 4:30 PM
