12/11/10
Day 75 in hospital (Admitted 9/28) – 2-3” of snow, down to 13°, definitely winter
Teri is alive, improved, but weak, nauseated and underweight. The past three weeks have been the most trying of her whole illness.
What happened medically?
Because she only had 100 total white cells (normal > 3,500) for two months since her 7th (and through her 8th round of chemotherapy), she was essentially completely susceptible to any common, rare or serious infection. Unfortunately Teri took on a multiple infectious hits including a superbug – a highly antibiotic resistant bacteria.
First, she developed fevers beginning on 11/11 and, with them, bed rattling rigors. Altogether she had 3 weeks of continuously positive daily blood cultures with the superbug VRE. This was not a good thing. It meant that the double antibiotics daptomycin and gentamicin used for synergy were unable to clear the infection. This happens because you still need your white cells to work in concern with antibiotics. They thought the infection originated from endocarditis with the bacteria attached to her mitral valve in the left chamber of her heart – they are not so sure. They placed and removed two PICC lines threaded from her elbow into her heart thinking that each line had become superinfected by this superbug and had to be removed as a potential source. They also placed and removed an internal jugular catheter in her right neck. Finally, they placed IV lines in her arms even though she was running out of IV sites. They gave her two sets of donor white cells to try to stem the tide of her uncontrolled blood infection. They spoke about the possibility of transferring her to the ICU. Finally, the stem cells from her autologous (self) transplant on the 11/8 began to produce neutrophils (bacteria killing white cells) on 11/27 and the tide began to turn in Teri’s direction, and the fevers came down and the rigors stopped. Although she is much, much better, the infection is not completely gone and her cultures are still intermittently positive through 12/6. This encounter with VRE infection was life threatening.
Second, from 11/4 – 11/13, a nodule in her upper right lung appeared to enlarge on CAT scan. Based upon the subtleties of the appearance scrutinized by oncologists, head of infectious diseases, pulmonologists, head of chest radiology and cardiothoracic surgery, this was felt to be infectious probably fungal (Aspergillus vs. Mucormycosis) rather than VRE, nocardia (her lung and brain infection from June) or new tumor. This lead to a whole uncomfortable multiteam discussion about how best to identify the bug whether via bronchoscopy (scope in the lungs), BAL (washing through scope in the lungs), VAT (scope through the chest into the lungs with chest tube placed), or thoracotomy (removal of piece, wedge or lobe of the lungs with chest tube placed). In the end, even the cardiothoracic surgeon felt in Teri’s current demise, it was too risky to undertake the surgical approach as that might be the tipping point to downhill course. In the end, it was felt that simply treating the most likely bug, Aspergillus, with antifungal agents was a safer path than going after surgically. However, the amphotericin (nicknamed ampho’terrible’) used to treat it caused rigors and set Teri back again. After several days, the use of four premedications together seemed to control these rigors. She required oxygen for two weeks. However, they switched to oral posaconazole and clarithromycin (for nocardia). That night, she began to get intractable 24/7 nausea, and couldn’t function. The lung nodule is remaining at about the same size, so it appears to be held in check by the current regimen.
Why did she recover? Simply WBCs (white blood cells)!!! Of course, antibiotics played a key role but antibiotics clearly can’t go it alone without WBCs. And a great, medical team, that discusses and communicates with each other daily. And not to be dismissed are the prayers and positive thoughts that have been continuous.
How is Teri feeling? How is B feeling?
At least “I’m not having pain” although constant 8-9/10 nausea maybe as bad if not worst.
Teri has been discouraged, tired, ravaged by these infections. She can’t see the light at the end of the tunnel i.e. home. At times she feels she can’t get a break … fever and rigors, rigors from medicines, central lines in and out, multiple venipunctures and IV placements, constant nausea, impending surgery …
She has lost 18 lb. Although 10 may be accumulated fluid 8 lbs of tissue weight is still too much off her slender frame. The accumulated fluid may have led her to require 2 L nasal oxygen for two weeks. But she is off it. With the rigors, she lost control of her limbs. She still has uncontrolled tremors in her right leg that may be exacerbated restless leg syndrome.
The 24/7 9 out of 10 (rating) severity nausea, probably from her oral antifungal or antibiotic, continues. All my usual vomiting medication suggestions from cyclic vomiting syndrome did not work. With Ativan, Reglan, Chinese medicine and acupuncture, it got down as low as 2 out of 10 but is back up to 6 out of 10 today.
She feels she gets no break. It is one complication or debilitating symptom after another.
From my perspective, the three most challenging symptoms to watch in a critically ill person include pain, fever and rigors and nausea. Teri had two of them. Watching these symptoms debilitate a loved one physically and destroy their spirit … from 3 feet away for up to 70 hours a week was wrenching both as Teri’s support person and as a physician – helpless in both roles.
Who visited, cooked, healed?
Our support system is amazing and has helped us immensely. Teri constantly feels that the prayers, the thoughts, the cards, the e-mail, the calls, the Reike, the Chinese medicine, the caring nurses, the excellent doctors have kept her alive! All her interactions in person have involved tears – tears of gratefulness that they travelled the distance to see her and perhaps tears of fear that this could be the last time they see each other.
Dina, the parent of former students from Chicago came with love from Ellie, Bryce and Clinton and brought delicacies from Chinatown that my father and I could eat. Bobbie another Chicago friend drove to give her love and support.
Tony and Elena local friends are making food to build up her strength. Kok Peng, Anna and Memee made rice noodles and rice congee – comfort foods – and brought them from Madison. Lois and Suzanne brought curry and pork buns all the way from NY Chinatown. Steve, Mary and Becca from Madison brought her Vietnamese bun (rice vermicelli salad) her favorite that was her first food from a restaurant in more than two months – since she had been on a neutropenic (no fresh vegetables …)!! From B’s dad’s urging, he asked his nephews wife Xiao Mei a Chinese doctor to fly in from NY to do diagnostic thermal texture mapping and meridian energy analysis followed by therapeutic Chinese medicine, acupuncture and qi massage to help her with nausea – it helped. From our building, Sandy has provided knitting projects as well as homemade spaghetti and chicken noodle soup, Natalie DVDs of romantic comedies. Sandy with the help of others are organizing another bone marrow drive at a Vietnamese supermarket. Nancy and some of the other Asian medical students are going to take turns bringing food. All of it helps tremendously. Teri realizes that not everyone can come to visit but knowing that they care is enough …
What really happened this past three weeks?
We can talk about it now, that she is better. But two to three weeks as the unrelenting rigors racked her frame, her primary oncologist called me from his vacation in the Caribbean and said she was ‘critical’ and that the next week or two she would either survive or not survive the VRE infection, partly dependent on whether her stem cells began to produce neutrophils. He asked that I put our kids on alert and let them know that they might have to travel here on short notice. At that time, many many difficult gut wrenching thoughts ran through my mind, foremost of which was that she was not going to be able to come to her beautiful home that she put so much of herself into.
BUT, SHE IS GOING TO COME HOME FOR CHRISTMAS AND BE WITH HER FAMILY AND ESPECIALLY BABY JACK!
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