T Plus 56

When we left off on T Plus 51 I mentioned that Jan was receiving daily fluids (1000 cc's daily) to help lower her Creatinine level so that she could safely start a regiment of the anti-viral drug Cidofavir. Yesterday the doctors concluded that her kidneys were sufficiently functioning to allow the treatment to begin. As a result we spent nine hours at the clinic. First there was the weekly chest x-ray, then the never-ending labs, followed by pre-hydration (2 hours), then the Cidofavir, and concluding with post-hydration. This will be the Monday drill for the next three weeks of treatment. As I mentioned in my previous article, the Cidofavir is administered weekly for four consecutive weeks. We're told that this will, in time, relieve her problems with urinary incontinence, urgency, frequency, and bladder spasms. These problems have been upsetting to her, physically and emotionally, for the past two and a half weeks. We welcome any relief that the anti-viral medication will bring. The doctors have said that it may not be immediate, and could possibly take a week or two, but at least help is on the way.

Miles for Moffit

Hey Everybody, this is Jason (the youngest son of the strongest woman). I just wanted to let you all know that Moffitt is having an event to raise money for the fight against cancer. It's a Walk/Run on May 10th. Several family members, including myself and wife Kim have signed up and I invite you to do the same!

The main event is a 5K (3.1 miles) around the campus of USF, past the Moffitt cancer center. As an alternative they also have a 1 mile run/walk that you can participate in.

$25 for the 5K
$15 for the 1 mile

More information can be found here:
http://www.milesformoffitt.com/

Online registration:
http://www.active.com/page/Event_Details.htm?event_id=1513945&assetId=dab080f0-39a6-4733-8394-f9b4409550c6

This is a great way to support the place that is doing so much for our loved one. I hope to see you there.

T Plus 51

Today we made our routine trip to the clinic for an 'in and out' visit. By 'in and out' I mean at least two to three hours. It's nearly impossible to get out of there in any less time. Today was to include routine labs and a visit with the Physician Assistant (PA). Instead, we once again spent the entire day. Jan's BUN and Creatinine levels remain high, together with a high pulse rate, which are the diagnostic indicators for dehydration. So she was once again led to a private room and connected to an I.V. for hydration. Since she continues to suffer with the incontinence, the staff was considerate enough to put her in a room with private toilet facilities. The medication which they gave her to counteract the incontinence and bladder spasms have not worked. They continue to contribute these urinary tract problems to the BK Virus which she has developed. This virus probably lay dormant in her system for many years. With a healthy immune system, many viruses never develop into problems. However, Jan has no immune system right now, so the virus decided to awaken. The urinary problems will probably not diminish until the doctors can rid her system of the virus. There are only a couple of fairly new medications which are used in these cases. The drug they would like to use is Cidofavir. The problem is that this drug, as with many anti-viral meds, is very hard on the kidneys. As a result, they will not begin the treatment until her Creatinine levels are normal. This will be their indication that the kidneys are operating sufficiently well to endure the Cidofavir. In order to lower her Creatinine levels she must be hydrated, so we have scheduled visits for the next four days to the clinic for I.V. fluids. Once the Creatinine levels are to lowered to within normal limits, they will begin the anti-viral treatment. This will be the only sure remedy to Jan's urinary issues. In the meantime, her appetite is not great, but is sufficient to maintain her current weight. The strength in her legs continues to be very weak, and she still requires the assistance of a walker, or the strong hand of a family member. The anti-viral treatment will consist of four I.V. sessions, spaced one week apart, to administer the Cidofavir. During those four weeks it will still be important that Jan is properly hydrated, so there will probably be continued visits needed for I.V. fluids. Dealing with this illness is very much like Newton’s Third Law of Motion, which states that “For every action, there is an equal and opposite reaction". It just seems that every time we make forward progress, Jan gets blindsided with something that sets her back again. Surely there is a law of physics out there that says "enough already". We still believe that better days lie ahead.

T Plus 50

Well Jan’s hospital stay was fairly short, only two days. During that time they ran a whole series of diagnostic tests, including blood cultures, an MRI of her head, and a lumbar puncture to analyze her spinal fluid. Once again, all the tests were negative, and her symptoms were attributed to the intense chemotherapy, combined with the laundry list of medications that she is currently on. Here’s a short list of her medications: acyclovir, beclomethasone, budesonide, insulin, lorazepam, magnesium, mirtazimpine, pantoprazole, paroxetine, prednisone, sulfamethoxazole, tacrolimus, ursodile, voriconizole, oxybutynin, oxycodone………………well, you get the idea. All of these drugs have possible side effects, and how they all interact…….who knows. She was taking even more medication, but upon discharge it was decided to eliminate a few, and reduce others. After her discharge on April 15th she remained very weak and eventually needed assistance to get up from a seated position. One of the side effects of steroids is a weakening of the large muscles, like your thighs, which are needed to help you get up from a seated position. Ten days ago she also developed some incontinence, which has been very upsetting. A urine culture revealed that she does have a viral infection called BK Virus. The doctor has decided to treat the symptoms (which so far have not worked) and to wait on treating the virus until later this week or early next week. The reason is still not clear to us, but he indicated that starting therapy for the virus too soon could risk kidney problems. So, the long, long, bumpy road continues. We know there is a day in the future when things will look brighter. We know that each day will pass, and bring us closer to that unknown bright future day.

T Plus 40

In my last article I mentioned that we were finally out of the hospital after a one-month stay. Well, scratch that!! We are back in. Jan had done fairly well the first week after our discharge on March 27th. She was able to take short walks (several hundred yards) at a reasonable pace. She was coherent, and could carry on a sensible conversation. However, about a week ago I noticed that she had become unsteady on her feet and would need assistance to walk. Forget about several hundred yards. It had become a chore to go several dozen feet. In addition, her concentration level had diminished, and it became nearly impossible to carry on a normal conversation. She would become confused or forgetful. It became apparent to me that something was not right. So today I called the hospital and asked for an evaluation. They took her in immediately and did some neurological bedside tests. It was obvious that further investigation was needed, and it was decided to admit her with the intention of running a cerebral MRI and some kidney function tests. She was also very dehydrated, which may have contributed to her problems. We hope this will be a short stay and that we will soon return to our apartment.

T Plus 38

Well Jan has been out of the hospital for two weeks and a day. The first week we had to make daily trips to the clinic for blood tests, and weekly x-rays. That has now been reduced to twice-a-week labs, and continued weekly chest x-rays. During the past two weeks Jan has had chest pains associated with her hiatal hernia, and painful hiccups, as well as some continued soreness in her throat. Most of those symptoms have been lessened with medication. Her primary issues now seem to be continued lack of taste, and fatigue. It takes almost no effort to tire her out. Even the shortest of walks leave her breathless and ready to take a seat. At times she seems so sedated that simple conversations are a chore, and often times she will fall asleep sitting upright in her chair. Walking is difficult, as she needs constant support, even to go very short distances. I continue to wait for the day when I will see a little "pep in her step". The doctors continue to blame the sleepiness, drowsiness, fatigue, and lack of concentration on the many medications she is forced to take daily (about 15 different meds, some taken 3 times daily...........you do the math). Many of the meds have numerous possible side effects, and who knows what the interaction affects are.

Yesterday morning she had another bone marrow biopsy (number seven if memory serves). As usual, the results won't be know for at least a week. These are always nerve-wracking times, to say the least. The apartment continues to serve our needs, but we do look forward to the day when we can return home. It's hard to believe that it will be six months on Tuesday since she was first diagnosed with AML. It's been a long and hard six months........to be sure, but we are hopeful that the worst is behind us and that brighter days lay ahead.

By the way, don't be shy to leave a comment. Leave us a note and tell us how you're doing. It's really very simple. Just click on "comments" below. Type your message in the box under the heading "Leave Your Comment". Below the comment box it will say "Choose An Identity". Just click on the bullet that says "Name/URL". Enter your name in the box, and click "Publish Your Comment". That's it.........very simple. We want to hear from you.

T Plus 29

Hooray........we're out of the hospital. Jan was given her discharge orders last Thursday. This picture was taken as she left the hospital after her one month stay. The biopsy reports have not yet returned to confirm GVHD (Graft Versus Host Disease), but the consensus is that she does have a mild case of it. This is expected in 30-70% of all bone marrow transplants. The doctors were quick to start Jan on steroids last week, which is the counter-measure for GVHD. All of Jan's blood work is excellent. Her white count is sky high, hemoglobin near normal, and Platelets are above 200k. The doctors all smile when discussing her hematology. Jan is still experiencing some painful hiccups, which aggravate her hiatal hernia. We have been given a new medication to try, so we're hoping she'll get some relief. She remains a bit depressed by the fact that foods have no taste. We sample all of her favorites, but so far only one or two items have any taste at all. As a result, her appetite is not great. This was also a temporary side effect of the chemo which she had back in Oct/Nov. It last a few weeks back then, but did eventually return to normal. Since discharge last Thursday evening, we have moved into our nearby apartment. It's actually very nice, and only minutes from the hospital. It's a two bedroom unit with twin beds in each bedroom. It has a washer/dryer and is completely furnished. It's really very comfortable. We were able to bring our DVR and wireless Internet from our home, and get it attached and working.

Jan is currently very fatigued. She can only walk for minutes at a time, and then needs to rest. This is expected, and we are told it will actually take months for her to resume normal activities. The steroids that she was given to counteract the GVHD have a side effect of causing "steroid induced diabetes", so we have to check her blood four times daily and administer insulin each time. This should only be temporary and disappear when the steroids are reduced, and then eventually discontinued. This past week we had to make daily visits to the Moffitt Clinic for blood tests, x-rays, and doctor's visits. On our visit last Friday it was mentioned that one of Jan's lung x-rays was suspicious. That, coupled with the fact that she had a slight cough and painful urination, let to more tests. They conducted a CT Scan, and culture swabs of the throat. Pending the results, she was placed in respiratory isolation, had to wear a mask at all times, and was not allowed to mingle with the other patients. Yesterday we learned that all those tests were negative, so she has returned to a "normal" patient status. She continues to take more than twenty medications daily, and the management of all those pills and capsules is somewhat daunting. The days ahead will consist of frequent clinic visits, frequent modification of her medication, and hopefully improvement in her strength and endurance.