Fever

Unfortunately Judy developed another fever duirng the night. With a 2 AM trip to the UWMC came another stay at the hospital. The fever is not to bad but persist ant. With what happened last week we can't take any chances. She is just in a regular room taking some antibiotics and hydration. Yesterday her white cells were at 16,000 and falling, good things. This morning they were at 19,000, a sign of the immune system ramping up to fight something. All of her blood numbers are good and everything seems to be going quite well with the transplant itself. They just don't like to see the young immune system burdened with this especially since they can't find the source. They can't recall when someone went septic that they couldn't pinpoint the bacteria.
Since Judy has had so much trouble with the Hickman port and it could be the source. They are going to remove it tomorrow and replace it with a PICC line. If the doctors and the PICC nurse had communicated better it could have happened today. It will go near her elbow and up her arm to a big vein, can't remember what they called it. This line is much smaller and has a lower risk for infection. The Hickman is a large one to collect the original stem cells and it is no longer needed. We began to question it on Sunday when a observant nurse noticed a small piece of tissue sticking out the end of the clave, she removed it and found what we thought was a significant piece on the inside, the doctors weren't impressed and tossed it. It looked pretty big to us and almost plugged the pathway. Last week they had to TPA both of her lines because the red one would flush but not draw. That is a chemical that dissolves any clotting and stays in the line for two hours and they is sucked out then the Hickman flushed. The next day is when Judy started to fell tired and just layed around. It's possible that that event may have released the bacteria. They claim that bacteria like to adhere to plastic. Hickman is made of plastic. The guess is that the bacteria festered for about a day and got he upper hand when she went into septic shock. Another theory is it is possible that when they cultured, the bacteria may have already been dead because of her white cell counts being so strong . This seems to make sense. We hope that the replacement port solves this problem. If anybody deserves to get a break it is Judy. The time is now.

Immune System

Turns out that I have my infant immune system to thank for saving my life. The doctors today said that it was my own body that got me through the infection. It was fortunate that I engraffted so quickly because without the immune system pumping out so many white cells, I reached a high of about 23,000, the outcome may have been very different. They told me that I cause way to much excitement for their liking. Of course the staff at the UWMC had a lot to do with it as well. The decisions they made certainly played a part in it. They also talked about the fact that we got to the hospital in plenty of time and if they had their way they would like the patients to live right next door. Good thing we stayed close. All of my numbers are excellent today except my heart rate increases a little to much when I stand up, so more liquids for me. They looked at my feet and decided that they didn't want to deal with them either. Nice. Lots of appointments left over the next week or so with a bone marrow biopsy at day +30. Just have to hope that nothing goes wrong and I continue to improve. Keep praying for me.

Out Again

After many blood cultures, chest x-rays, CT scans, every antibiotic known to man, gallons of fluids to maintain my blood pressure, two days in ICU, two days back on the transplant floor, they still don't know exactly what the problem was. They believe I was septic and had a blood born bacterial infection which could have come internally, I could have breathed it in or possibly from my Hickman. They released me today with a hefty antibiotic to ward off possible leftover problems in my body. We are back at the Marriott and settled in. I have a blood draw and clinic visit at SCCA tomorrow where they will review the past several days and hopefully deal with the issues I'm having with the excessive dead skin hanging off my foot from my blisters. They didn't want to deal with them at UWMC and then send me back to SCCA to have them wonder what they looked like the day before. Imagine the entire ball of your foot as a blister with dead skin from your toes to the middle of your foot. It's a big area. All in all, it's all good and I'm feeling great!

Doing better every day

Feeling pretty good today. The doc's came in and reviewed the CT and they say I have fluid in my lungs - not surprising with all the fluids they've been giving me. So about 3pm the gave me something that would start eliminating some of the fluids so needless to say I visited the restroom frequently all afternoon. Still nothing has come up positive on any blood culture so they still can't pinpoint what caused this. Had a doc from Infectious Disease come in and check me out today and he had no explanation. They're trying hard to find a reason, but I guess it's just my body being difficult as it was when my spleen was removed (which of course doesn't help this problem at all). They are talking about releasing me tomorrow instead of Monday. I don't know if it's because I really pushed yesterday to go home but I want them to assure me it's safe and they're not just trying to please me. I've been good and haven't said a word about going home today. It's late and I'm tired. We'll see what tomorrow brings...

Back to the transplant floor

Feeling much better today. Had the rounds of doctors come in to check me out and they still can't find out what the problem was. Still taking multiple antibiotics (all day) just trying to attack everything it could possibly be. Had a CT scan done around 2:30 this afternoon and the preliminary findings suggest that there is something fuzzy in my lung. After the radiologist reviews it and the doctors look it over tomorrow morning, they will come and give me their findings. The good part of the day was after the CT scan I was out of ICU and back to the transplant floor and had my independence back. I can get up without assistance and walk again around the floor. My blood pressure has stabilized and hopefully it's my body and not the drugs they are giving me. Either way, I'm happy that it's not as low as it was the past couple of days. That was kind of scarey. Marc stayed at the hospital with me for the past couple of nights, but it was time for him to sleep on a real bed so I sent him home tonight. John and Connie are both awesome in anticipating everything we need. I can't thank you guys enough. Thanks to everyone for the comments on the blog and the emails and cards. It really makes me feel good to know I have so many special people pulling for me.

Yesterday started with a fever and a trip up the hill to SCCA. After taking blood cultures and infusion hydration the fever seemed to subside and we were able to go back to the hotel. About 6:00pm Judy developed another fever. Several calls sent us to UWMC. After checking Judy out they started IV's and antibiotics. All was going well and we were just waiting for the antibiotic to finish and go home. At about 9:00 Judy complained about chest pains. I called the doctor over and within seconds Judy was crashing. She started shaking violently, they called them rigors. She went completely pale and her vital signs plummeted. Her BP was 50/28 pulse was 220-240 and she was out of control. You see this type of thing on TV but in real life it is intense. They struggled to get her stabilized and it seemed to last forever. Coupled with the chaos she started vomiting. She was wearing a oxygen mask, well you get the picture. That just compounded the problem. Since we were in infusion they weren't completely prepared for this type of thing. People were coming from all directions and before I new it we were off to ICU. I could hardly keep up with them. The ICU charge nurse was a guy named Ken, looked like the type of guy you would avoid. He was the most calm and confident person I have ever seen. It was still a struggle in ICU because they just didn't know what had happened. They tried to get her got her settled down with medications but things just weren't going well. The drugs slowed her heart down but the BP was a issue. Things settled down a bit but the process continued through out the night. At first they though she had a heart attack but as the blood results came back it showed no signs of that. They were also treating for a reaction to the antibiotics. As the night wore on the alarms continued to go off. It seemed it was something different every time. Low BP, low blood gases and erratic heart beat those types of things. In the morning the transplant team arrived and the consensus was that it must be an infection. They proceeded to throw all of the antibiotics available to cover they full spectrum, as they wait for cultures to grow. As we wait for that the BP continues to be a problem. They had her on two types of pressure drugs to constrict the veins. The doctor told Judy that he was surprised to see her coherent, he said that most people can't even talk. His surprise was quite sincere. The day brought many doctor visits sometimes the same ones two and three times with many meetings outside the door. They are trying to wean her off of those drugs but so far it hasn't worked. Blood pressure laying down is fine but standing or sitting it drops to unsafe levels. She can't get out of bed so the catheter is her new best friend. Judy doesn't complain but she is about it! She had a nice debate this morning with the doctor about how bad she wanted it removed but the doctor won that one. We checked out of the hotel today as Judy will be here until at least Monday. Thanks to John and Connie for going over there and packing all of our stuff and I know it was a lot of work because we planned on being there for a month. We have reservations for Monday. The word about Judy got around the hospital pretty quickly because there were visits from the nurses from the transplant floor through out the day. I could go on forever about the events of the last 24 hours, it seems so surreal. As each hour passes Judy appears to be getting better. She still has a long road ahead but with all of your thoughts and prayers she will prevail.

Another day

Long day today, pretty tired all day and slept a good part of it. The same problems still persist and it seems that every thing takes alot longer to accomplish. Tummy was upset some of the day, I had to take nausea meds to help with it. Walked around a litte and ate pretty good. Clinic visits tomorrow, hope my Hickman works alright. Keep em' coming my way.

Getting better every day

Had a blood draw and clinic visit today. Again they had trouble getting blood from one side of my Hickman. Ended up with them having to inject a drug to dissolve anything that may have been blocking it, leaving it in for two hours, then going back so they could remove it from my line. Thankfully, it worked like a charm and both sides are working normally. The blister on my left foot was extremely impressive and they changed the dressing on it. A short time after we got home, I found a large wet spot on my sock - the blister had broken! It feels so much better now and now I just have to keep the ointment on my feet so as the layers come off it doesn't get infected. My hands are still in pretty bad shape and I keep them gloved to keep the ointment on and keep them from getting dried out. The PA said I'm doing great and encouraged me to go home for some time this weekend. I'm a little nervous about going too far but I may give it a shot. My mouth still has some sore spots in it but it's improving every day. The PA said I could come in twice a week for check ups but I opted for three times this week just to make sure I'm still on the right track. As long as I can continue to fight off fevers and any other issues, I should recover quickly - although my immune system will still be in it's infancy stage for a while. I'm still taking hydration through the IV it takes about 4 hours to do. It will be an ongoing thing but hooking everything up is getting easier. I have to shower every day and it it is exhausting. It keeps me conscious of how young my immune system really is. Every day gets better.

Sunday, March 22

Forgot to blog last night, but all is well. Yesterday I had to go in for a blood draw and clinic visit. They had some trouble getting blood out of one side of my Hickman, but it did come slowly. Doc checked me out and said I was doing fantastic. I go back in again tomorrow for another clinic visit with my team and get my schedule for the rest of the week. I feel pretty good but still get tired easily. Still have the massive blister on my left foot which makes it a little difficult to walk. Hoping to make this stay downtown as short as possible and so looking forward to being home.

Day +14

I'm out! Today I was released from UWMC. It was somewhat bittersweet to say goodby to the nurses and staff, after five weeks you tend to form relationships. It was really strange leaving the hospital and arriving at the Marriott. I can't really explain it but it was definitely sensory overload. Happy to be out but struggled to comprehend everything that was going on around me. John stayed with me all morning until Marc arrived and then gave me a ride to the hotel. When I arrived at the Marriott, Connie had taken care of most everything including completely sanitizing the room with the bleach solution. She had gone shopping and had food ready and dishes washed. We left the UWMC with a shopping bag full of medications including a list of what to take and when. Tomorrow will be the first time for Marc to give me an IV infusion, he claims he knows how to do it but is still a little nervous about it. I have two appointments at SCCA tomorrow. Blood draws to see if I'm still cooking and clinic visits to check out the other problems that still persist and will for a few more weeks. My mouth and feet are pretty sore today but not bad enough at this point to require any medications but hurts like hell. We are sitting here enjoying the view of Lake Union and the downtown skyline very nice! I am looking forward to sleeping in a nice bed and being cuddled by my husband, with that said I,m off to bed!! Keep up the prayers and positive thoughts as this next phase has just begun.

Last night in hospital

Tonight is my last scheduled night in the hospital. I'm scheduled for release tomorrow but they figure those proceedings won't even begin until around 2pm. I'm completely disconnected from all the IV's and can move freely about. Did my walking today with Sharon and then again with Jen so got my laps in. My body is feeling pretty good. Still have a few hot spots in my mouth. My hands are doing better but still have raw spots from the chemo burns and my feet still have my ultra-super blisters under my toes but everything else seems to be working fine. I'm excited and nervous about leaving tomorrow. I've definintly been here long enough but now I have to take my infant immune system out into the big germ filled world. Still a long way to go but the worst of it is over..

Day +11 and 12

Sorry, one of those days where there just wasn't enough hours. Today Judy is dictating the blog. Here goes. Overall feeling pretty good, my mouth sores have subsided to the point of toleration. Now my mouth is covered in slime. I can finally drink water without the intense burn, but only small sips at a time. My hands and feet are still having issues, one of the blisters appears to have partially popped and that relieves the pressure. The other one is still intact. Hands are mostly effected they are dry and look like they have third degree burns and the skin is sluffing off to the point where I use scissors to remove it. I cover them in special salve and then wear gloves to protect them, yuk! I hope they return to normal because they are pretty ugly right now. I've not had any drugs for a couple of days and sleep is much better now. I am on my last bag of anti-biotics and no more nutrients. Still spike fevers but there seems to be no infections that are causing them, it could be just the high dose chemo or the severe mucositis. I walked about a mile today leaning on a walker to take the stress off of my feet, it really helps. I continue to improve with each day that passes and I am due to be discharged to Marc on Friday, we will be staying at the Marriot at Lake Union until they allow me to go home. That could be as much as four weeks, but with the progress I've made we anticipate that it will be at least half that long. Looking forward to just going outside for the ride over there. We booked a room with a view so in the evening I will enjoy just sitting on the balcony taking in the things that people normally due on a daily basis that we all take for granted. Keep up the thoughts and prayers we still have a ways to go. Thanks to all!

Day + 10

Well Judy never ceases to amaze us. Her blood numbers surged overnight again. In most cases the cells are just starting to graft and just starting to show counts. Judy's counts today are very near pre-hospitalization levels. The doctors tell her that she could now be released as early as Thursday or Friday. With these good blood numbers come a relief in the side effects. She was able to swallow some 7-Up and some chicken broth. After not eating or drinking for this long she has to eat small quantities. The fevers are still present but seem to be shorter in duration, she required no pain medication today. She still has a long road with many obstacles so keep the good vibes and prayers coming as they are obviously working.

Day + 9

Today is day 9. Judy continues to exceed expectations for growing new cells. The numbers spiked considerably last night. She is still having unexplained fevers and they continue to look for causes, but so far there are none. This is really good news. Most of the side effects are still presenting some challenges but are somewhat able to be controlled. She is really tired of the morphine. The morphine causes all kinds of side effects. Lack of sleep, odd dreams and tremors. Just to name a few. The days drag for her but she knows that there is light at the end of all of this. Since Judy can't walk at this time when I arrived this morning Diana was sitting on the floor holding a small portable bike device that Judy was peddling. It was heartwarming to see. Thanks to all for their positive thoughts and prayers and a special thanks to Karri, Amy and Gene. We can't express how much your help is appreciated.

Day + 8

More good news on the blood cell counts. They are up again today, although not nearly high enough for any side effect relief. As each day passes and the numbers keep going up Judy will start the feel better. Her hands and feet are so painful that it almost takes her mind off all of the mucositis issues. She unable to walk any more because of the foot pain. This has been an especially tough day today for Judy, lots of pain and lots of problems.

Day + 7

Sorry, did not have time to post last night before I hit the wall. Friday AM brought some well deserved good news for Judy. After the midnight blood draw we were informed that new cells are showing up in her CBC!!! What that means is that the marrow appears to be taking and starting to produce juvenile blood cells. Her numbers have been zero to this point but now she has some red cells, white cells and platelets. The doctors were very optimistic about this but also caution that she has a long road ahead. They usually don't see any new cells prior to day + 10, but they haven't had anyone like Judy before. As it turns out the blisters were caused by walking but not excessive walking. She is experiencing something known as foot and hand syndrome, common in this type of high dose chemo treatment. Gee, thanks again for telling us to be aware of that. They usually don't tell you these things until they occur and the blisters probably could have been prevented. Her hands and feet look like they are severely chapped. Lot's of different things to help it but it would have been better to avoid it. The hospital is not immune to employees that are incompetent, some are wonderful care givers and others should find another line of work. It will be awhile until all of the nasty side effects begin to resolve themselves, as she makes more cells the process will begin. Go cells go!

Day +5

One more day down and quite a few more to go. All of Judy's blood numbers are at zero. She is still receiving transfusions every day to help with the count recoveries. Still has a fever and that can't be treated because the med's must be taken orally and that just can't happen at this point. They gave her a CT scan a day after the chest x-ray as another precaution, there are some things happening in her lungs they want to watch closely. So is so determined to get out of the hospital she has developed two blisters on her feet from walking. It's not because of over walking but the non-slip socks they make her wear. Just to rough on her feet. They underestimate her resolve. To top it off they send in a nurse (in training) to check her vital signs and was unable to even take a blood pressure reading. We asked her to do some things around the room and she just had this blank stare on her face, enough of that. When the primary care nurse came in we "politely" asked if then could do the training on other patients that aren't at such high risk. This is the kind of things that really make you question the judgement of our so called health care professionals. The routine remains the same for now, suction, medicate,sleep and some walking and sitting. Keep up the good vibes!

Day + 4

As it turns out it is only day +4. No blog yesterday, just not enough hours in the day, realized I missed it at about 4 AM. Judy is doing pretty well all things considered. They have had to give her blood transfusions as her counts are absolute zero. No reds cells, no white cells and no platelets. All of this is fairly routine. One of the major problems is regulating the temperature in the room. It can change as much as ten degrees without any help at all. The nurse came in tonight and commented about how cold Judy had it in here. I informed her that no one had touched the thermostat and then the excuses started from her. They are very good at not taking any responsibility here for anything that occurs. I believe that they teach them to CYA!! You can buy the type of thermostat that they use here at Home Depot for about 15 dollars. It is totally ridiculous. The doctor told Judy that she is right where they expected her to be and these things are all normal. Well maybe not the thermostat. Still running a fever and had another chest x-ray today, more precautions. Thanks to those of you who are sending cards. They are a bright spot in the day for her. Keep the good thoughts coming her way!!

Day + 3

Sorry, I was wrong about the days post transplant. It is now day 3. Today started with a field trip to radiology for a chest x-ray. Fever went up a little overnight so again as a precaution they look for any possible cause. So far all the tests are negative for any type of an infection. The mucositis is severe enough to sometimes cause a fever by itself. The rest of the day was pretty routine, suction, suction, suction-painkiller, sleep-repeat! Nothing seems to really relieve it, so we hope the next few days pass quickly. Keep up the good thoughts.

Day + 1

Today is day +1 post transplant. Nice and quiet for Judy today. Sleeps a lot but is doing pretty well. Still has the nasty side effects of the chemo, but each day passes they will begin to resolve themselves. The suction device is now her best friend! She still can't eat or drink so very soon here they will begin too infuse the necessary nutrients. The bag is quite large and will take about 24 hours to complete and then they replace it with another. This will go on until the mucositis improves to the point she can drink and eat. We walked twelve laps around the floor and she is hard to keep up with. As you walk around the floor and pass the doors labeled "BMT" you can hear all of the other transplant patients using their suction as well, I don't think anyone escapes this . The fever is still present and the antibiotics are flowing, but it doesn't seem to be an issue at this point. Once the mucositis subsides it is going to be difficult to keep her down. Haven't seen any blood numbers today, but they must be alright because they aren't giving any infusion of blood products. Platelets count is up enough so there hasn't been any more bleeding. This has been a pretty good day.

Second Transplant Day

Hi, it's Marc again tonight. The transplant is now complete! It's now the road to recovery. Judy is really amazing, but the chemo side affects are now becoming a issue. The mouth and throat problems are now to the point of not being able to swallow and lots of pain associated with that. She has had some bleeding problems today so very soon they will infuse some platelets, no big deal there she has had a couple of those at Fred Hutch during the early chemo. She is on a PCA device so that she can administer her morphine as needed. They advise us that the worst is yet to come over the next 10 days or so, but can be relieved with the pain med. She still has a fever but the cultures have been negative to this point. The doctor tells us that if it was something serious in terms of an infection the cultures would have showed by now. They will continue to grow the culture for 5 days. The key now is for her to remain comfortable and the new cells need to start doing their thing in her bones. We struggle with what is going on but they assure us that this is all normal and there is nothing that they haven't seen and dealt with in the past. They are very reassuring and that helps with the stress of the situation. Sometime during the night the nurses made her a nice poster that they all signed with words of encouragement. They call it "Happy cell day" Hey John and Connie, thank you for the muffin top! It beats the food down stairs. Keep up the good thought and prayers

Cells are here!

Today was the day! This is Marc tonight. It's been quite a day for Judy. She got half of her stems cells back. It went well but unfortunately she has developed a fever, not at good thing. They are taking every precaution at this time with a broad spectrum of antibiotics as they wait for the cultures to grow and tell them exactly what is happening. With absolutely no immune system left this could be a real challenge. It was quite a experience to see how the stems cells are reinfused. The tech from Fred Hutch showed up at 2:30 PM with a suit case in tow. Inside of it was all of his tools to prepare the stems cells. They are frozen in DMSO at -180 F. He has a warming pan of water that heats them up to exactly 98.6 and he prepares one bag at a time. She had four bags of cells today and will have three bags tomorrow. The cells are gravitated into her via the Hickman along with a host of other meds. During the infusion there were two nurses and the Fred Hutch tech. They do not leave the room and monitor everything imaginable. It took just over two hours to complete the infusion. Judy had a scowl on her face during most of it and dosed on and off. It left a horrible taste in her mouth and they expected that so they have a supply of lemon drops to suck on and they did the trick it seems that lemon drops are the only thing that works (according to them). Judy is so brave to go through this without a single complaint. The nurses all love her and almost fight over her gets to be her primary care nurse. Gives a lot of peace of mind knowing that they care that much about her and they all want her to get through this. A special thanks to John, Sharon and Diana who have all sacrificed to be here with Judy during this fight. Also thanks to all who pray for her complete recovery. Round two tomorrow!!

Tomorrow's my new Birthday

Today was pretty uneventful as all I did was sleep all day. Diana came to take care of me and spent the entire day watching me sleep and making sure they staff did all they could for me. Marc came in to relieve here and he also got to watch me sleep. I haven't eaten more than a couple bits today and they are giving me plenty of liquids. Ready to go back to sleep now. Thanks for all the phone calls today and sorry I didn't get to many of them. Tomorrow will be a better day.

Day 1 Down (Today is day -3)

After the giddy effects of yesterday, I don't really remember Diana leaving or Marc calling last night. I actually felt pretty good but a bit tired. Really wanted to watch the Amazing Race and The Apprentice. Had the Race on but couldn't even begin to tell you what it was about. Watched bits and pieces of The Apprentice but ended up falling asleep about a half hour before it ended. Last night was the best sleep I have gotten since I've been here. They still came and took my blood and stuff at midnight and 4am, but it wasn't the slightess problem for me to go back to sleep. Eating good today without any problems. I did have an english muffin for breakfast that slightly scratched my throat, but I'm not really thinking about it for now. My mouth has been reminded of the effects of Prednisone by having a filmlike covering inside and water cannot quench my thirst. John came to stay with me today to make sure I was stable and ok and we did a half mile lap around the floor. Marc was here to check on me as well, but I made the visit short since I would like him here tomorrow for the next chemo treatment. I finished up the laps tonight while I was waiting for dinner although I do notice I've slowed my step a bit. No prednisone with tomorrows chemo although there are other serious side effects possible that I plan not to take part of. Keep all the good thoughts coming and for those that have asked, I can have cards and wall stuff, just no flowers or live plants.

We're on our way

Midnight last night I received my pre-chemo prednisone. That went fine and I slept until they woke me at 4am to take my vitals. Had some trouble getting back to sleep so I turned on the tv and dozed off and on until 6am. Started infusing my IV fluids at 8am and that will continue for the next several days or more. At 11:40 came the syringes with all the pre-meds and more prednisone. Around 11:45 my support team arrived (Marc and Diana). At 12:15 the big guns came out with 6 large syringes loaded with the vp16 (chemo). Each of these took 39 minutes to inject. It took a little over 3 hours to finish them. Since they have to dilute it with the alcohol, you feel like you've been drinking for a while. You know, the dizzy, woozy, lightheaded, can't walk, nauseaus feeling. They had me on bed rest for four hours and can only get up after that with assistance. I don't have any desire to get up and walk around anywhere nor do I have a desire to eat but I know they need me to. I had Instant Breakfast and peaches and graham crackers. They came back on me. I've got two more pills to take with food so I'll try some pudding or something smooth in a little bit. Other than when they wake me to take my blood at midnight and vitals at 4am, I think I should sleep pretty well tonight.