T plus 22

Well another week has passed. Jan's mouth sores improved to the extent that she was removed from all her I.V.s on Monday. By improved I mean that yesterday she had several sips of water, three ounces of Boost, and one saltine cracker. Apparently that's the minimum requirements for discharge because we were told yesterday that we would be able to leave today and relocate to a nearby apartment for the next two months. However, yesterday Jan began to develop some diarrhea and nausea that became worse through the night. This potentially is an early warning sign of Graft Versus Host Disease (GVHD). As a result, any plans for discharge were dismissed, and instead Jan was scheduled for a double endoscopic procedure (one via the esophagus and one rectally) to obtain biopsies. Only a microscopic examination can confirm GVHD. It may take a few days for the results, but they don't waste any time starting precautionary treatment with steroids. The side effects of steroid therapy can be varied and unpleasant. Jan has already endured four weeks in the hospital and I dread the fact that we need to stay a little longer. Numerous tubes of blood have been drawn daily since Jan was admitted on February 27th and the numbers today continue to be excellent with a WBC of 5.66K, Platelets 255K, and hemoglobin at 10.4. Her numbers have actually been sufficiently high enough for discharge for about a week. Only the mucositis and now the diarrhea/nausea have prevented us from leaving. So, once again, we check off another day.........and wait to see what Day Plus 23 will have in store for us. By the way, today Jan was able to eat a container of yogurt......Yippee. I can't wait until she can once again enjoy my famous spaghetti with Cuban toast.

T plus 15

The past four days have not seen much change. Jan continues to have mouth and throat sores which also extend throughout the entire GI track. This morning while trying to administer some liquid medication she suddenly, without any warning, threw up a very unpleasant combination of mucous and blood. It was so sudden that there was no chance of capturing it before it landed on her pajamas and bed. The nurses took it all in stride..........just another day at the office for them. For Jan, it was a different story as she wondered 'what the heck is happening'. They explained that this was just a result of the mucositis. The accumulated mucous, dead skin cells, and blood just needed a quick exit from her stomach, and took the shortest route. We were able to change Jan's clothes from the waste down, but since she was wearing a pull-over top, we have to wait until 5:00 P.M. before the I.V.'s can be removed long enough for her to slip on a fresh top and clean up a little. The doctor confirmed that all is still progressing well, and despite the continued pain, things will improve soon. It appears that a discharge probably won't occur until the end of the weekend, or early next week, depending on how soon her body heals from the mucositis and she can eat, drink, and take meds by mouth. Her lab counts continue to improve, and actually are sufficiently high now to meet the minimum discharge requirements. Her WBC improved from 1.16 yesterday, to 1.85 today, while her hemoglobin remained at 9.5, and platelets rose from 45K to 67K. All excellent numbers for Day T plus 15.

T plus 11

Despite the fact that Jan's throat remains ulcerated, the doctors decided to administer the final dose of Methotrexate. As you may recall, this is the nasty drug that caused the mouth sores in the first place; however, it also the drug that best combats the possibility of GVHD (graft versus host disease). The decision whether or not to administer the final dose is always a last minute one after an examination of the mouth and throat. The doctors must then weigh the added aggravation of the mouth sores against that the drug will cause against the possibility of avoiding future complications. So, at 2:30 this afternoon, the final dose was given. Jan has been pretty much been asleep for the past 36 hours. She does get up to use the restroom, but once she returns to her bed, she's quickly asleep again. Her attention span is about ten seconds. She really is not aware of the time of day, day of week, or even where she's at sometimes. She remains on oxygen when she sleeps and has continuous I.V.'s running. As I look at her I.V. pole right now, she has five pumps attached, each which can handle from one to five lines of medication, fluids, nutrition, etc. For instance, there are currently ten bags hung and dripping. Having said all that, things are progressing normally. Her WBC actually increased to 60 to 210 today (with the normal being somewhere between 4,000 to 10,000. While the increase sounds insignificant, it's actually a good sign to see a reversal. Her WBC the previous five days went from 1030, to 400, to 150, to 140, and finally to 60 yesterday. Hopefully, this is an indication that her counts will start to slowly increase and that engraftment of Pack's stem cells will take place and start producing healthy blood cells. They have increased the minimum platelet count from 10,000 to 20,000. Since her count this morning was 12,000 she will be receiving platelets again this afternoon. Onward to T plus 12...........

T Plus 9

The past two days have not been good. While the abdominal pains which I reported on earlier have subsided, they have been replaced with severe sores on Jan’s throat. This is one of the side effects of Methotrexate. The nurses say her throat is “a mess”. As a result, Jan can not eat, drink, take pills, or even swallow saliva without pain and discomfort. Yesterday they hooked her up to a “pain pump” which administers the drug Dilaudid twenty-four hours a day, and has a push button which can be activated by Jan every ten minutes if additional relief is needed. However, they started out with a very low dosage of the medication and it had very little effect on Jan’s pain yesterday and last night. She could not sleep most of the night, and was awake every fifteen minutes or so pushing that pain button. Each button push results in a very loud beep, so I woke up about every other beep. The doctors monitor the amount of pain medication to administer by the number of times the patient pushes the button for extra relief. In Jan’s case it was obvious that she was up most of the night in discomfort. So, this morning they doubled the strength of the Dilaudid and gave her something for anxiety. Thankfully, right now she is sound asleep. They promise to give her whatever pain meds she needs to take the edge of her throat pain. It’s a bit of a balancing act since they want to control the pain, but not to the extent of making the patient incoherent and susceptible to other problems. The Methotrexate is given on Days +1, +3, +6, and +11. Since we are on Day +9, she has received three of the four doses and will be due the last one on Saturday. However, if her throat is ulcerated and bleeding, they will fore go the last dose. Jan's white count today is 600 (normal 4,000 to 10,000), her hemoglobin is 7.6, and her platelets are 9,000. Since her hemoglobin is below 8, she will require a blood today, and since her platelets are below 10,000, she will also require one or two bags of platelets. Speaking of bags………..as I look at her I.V. pole I currently count nine different bags of “stuff” running. These include fluids, antibiotics, various minerals, and pain meds. Since she is not eating, I suspect that either today or tomorrow they will start to feed her I.V. as well. Now to focus on the bright side. We have now been here two weeks and one day, and Jan has completed her chemotherapy, received her bone marrow transplant, has survived every inconvenience, and by this time next week we’ll be very close to being discharged and moving to our temporary housing.

T plus 5

Today (Sunday) is T plus 5. Jan continues to complain of severe abdominal pains which the doctors have concluded are related to her hiatal hernia and gastro reflex disorder, both of which are aggravated by the chemotherapy which she has received. All chemotherapy aggravates the lining of the mouth, throat, esophagus, stomach, and intestines. The pain is being managed fairly well with Oxycodone, and her nausea is being treated with I.V. Compasine. When the medication for the abdominal pains and nausea are working, Jan feels fairly good. In all, she is given more than twenty-five pills a day for a variety of reasons; most have them I have already discussed in earlier postings. In addition to the pills, she continues to be hooked up to her portable pump which administers the drug Tacrolimus twenty-four hours a day. She has received two doses of another drug called Methotrexate, which is also given to combat GVHD (Graft versus Host Disease). This drug can cause a lot of problems, but it can also be very beneficial. She will have two more doses administered this week. Our philosophy continues to be……..”one day at a time”.

T plus 2.................March 6, 2008

Well, we are at T plus 2 (Transplant day plus two additional days). This is the vernacular used by the doctors and nurses to pinpoint where we are in the process. We are focused on T plus 20, that’s when we hope to be discharged and relocate to a quiet apartment for some isolation, uninterrupted naps, and recovery.

The transplant occurred on schedule late Tuesday morning. Tuesday was not a good day for Jan emotionally. She was extremely distraught and frightened throughout much of the day. The nurses were quick to react with some mild sedation, but eventually had to escalate the dosage as it became clear that relief was not forthcoming. Eventually, Jan was able to get composed and relax. The nurses all complemented Jan’s brother Pack for having donated a very generous volume of stem cells. He had been exercising and eating right for weeks in hopes of providing a wholesome sample of stem cells, and it proved to be just what the doctor ordered. The actual administration of the stem cells was almost anti-climatic, not very much different than a blood transfusion. It only took about an hour, and was monitored closely by a nurse the entire time. Jan’s vital signs remained good throughout the entire procedure, with no side effects.

Jan’s immune system continues to be in decline (which is normal, and expected) as we head toward neutropenia (where her white count will be near zero). She will be neutropenic for approximately two weeks until her new stem cells engraft. It is during this time that she will be most at risk for infection, and thus she will be closely monitored and many types of antibiotics will be administered. Her current medications included anti-everything drugs. She is being given anti-infection medication, as well as anti-viral, anti-fugal, and anti-graft vs. host. Basically, if there’s a risk, she’s being given something to counteract it.

Yesterday, day T + 1, was one of her best days. The anxiety was under better control, and her appetite returned. She confirmed with the PA (Physician’s Assistant) that she can eat pre-packaged food items, so I ended up making two trips to a local grocery store to get a few essentials (donuts, Rice Krispie treats, lean cuisine spaghetti, and hot dogs). She ate about half the items, with an eye towards today to finish the rest. The nurses were all very excited that she was eating, especially since they expect very little appetite during her last two weeks in the hospital. The reason for that may be any, or all, of the following: nausea, lack of appetite due to the excessive medications, mouth sores, and extreme fatigue. The nurses claim that most patients lose about ten pounds during those last two weeks of hospitalization.

So far, today has been another good day. To me, any day that Jan does not have much pain or discomfort is a good day. Her hemoglobin was low this morning, so she is currently receiving her second unit of blood. She complained earlier of a headache, but that was medicated and she reported that she felt much better. So now we focus on T + 3 and beyond.

T minus 3 ............March 1, 2008

Well, since my last update, Jan was admitted to the hospital on schedule on February 27th, which also happened to be my mother’s birthday. So, happy birthday mom. By 9:00 P.M. following admission they had already started the chemotherapy treatment. The initial drugs, Fludarabine and Busulfan, are to be administered over a four day period. A series of blood tests are required after the first and fourth treatment. The analysis required on that blood must be done in Pennsylvania, so it has to be shipped over-night with the results expected within 24 hours of arrival. The Pennsylvania facility is the only location in the country authorized to run the specialized blood tests.

Today is Saturday, so we are at T-minus 3. The bone marrow transplant is scheduled for Tuesday, in three days, thus the T minus 3. In a few minutes Jan is scheduled to be attached to a small pump which she must carry around for the duration of her hospital stay. The pump (pictured here) is used to regulate a new drug which will be administered today called Tacrolimus. This drug is used to inhibit Jan’s immune system to help reduce the risk of rejection of the stem cells which she will receive on Tuesday. The medication has to be regulated very closely, thus the special pump.

Jan's only discomfort the past four days has been some mild nausea, periodic anxiety, boredom, and some claustrophobia. Our room is only about 10 x 10, and Jan is restricted to walking no further than a few feet from her room. On her previous hospital stay she was permitted to walk throughout the hospital, and even outdoors. That’s not the case here. Patients must remain within eyesight of the nurse’s desk.

Jan’s brother, Pack, continues to receive his daily injections needed to promote cell growth for the harvesting to be done on Monday. He is doing well, and has not experienced any side-effects. We have a large calendar in our room which marks the events leading up to the transplant, also known as Day-zero, and lists some of the procedures and/or medications which will be administered following the transplant. The weeks following the transplant will be the most critical, and will also be the time when most of the fatigue and discomfort will be noticed. It’s hard not to wonder what those days will be like. We try to focus on the days following Jan’s discharge when we will be in a near-by apartment and more in control of our environment.