Exit Consultation

Today we had our Exit Consultation with Dr. Holmberg. The meeting was a summary of what I had been through and all the potential problems that could come up post transplant and what to watch for. It almost sounds like the transplant was the easy part and now that they've totally beat up my body, it's open for a whole host of new problems. Thankfully, most of them have low percentages so we're keeping our fingers crossed that all goes smoothly. I will still have doctor visits weekly for the next couple of months. In addition, there will be tests done throughout this first year including several bone marrow, CT and of course blood draws. After that it will be yearly visits to the clinic for the whole battery of tests that I went through pre-transplant to monitor any changes. My blog postings will not be daily (or so) as they have been, but I will try to keep you all informed of how I'm doing. I truly appreciate everyone's thoughts, prayers, cards, emails and encouragement. I know you all helped me get through this ordeal. I especially want to thank all my caregivers and everyone that helped me out at my house and at work. We couldn't have done it without you all. And to Marc, it's been a hell of a ride and I've put you through the ringer and you were there for everything. I Love You!!

It was "Pulled"

Went to blood draw for my first appointment. Even though the nurses bring me back to do it, there is always confusion as to what type of port I have and Tim ends up being called and gets it every time! After that it was up to gynecology for my exit interview there - all good. Next came the clinic visit (and removal). My PA, Matt, is always amazed that I still answer no to most of the routine questions they have to ask. They have told me the problems I should have as a result of my trip to ICU, and I haven't had any (knock on wood). Time came for the removal of my line and he was he was going to pull it out. They protected the area on my clothes, snipped the stitches and told me to hum. I was a bit puzzled but they say it's a way they have found to keep people exhaling while it's removed. So Matt and I hummed for about 10 seconds and whaa-laa, it was out. He proudly tried to show it to me, but I told him I wasn't interested. Didn't feel a thing. All they did afterward was put pressure on the site for 10 minutes and I was free to go. Wow! One more appointment with Oral Medicine and I was released from them as well. Nothing tomorrow and on Friday I have my Exit Consultation with Dr. Holmberg. At that time I should be released from the (transplant) team but that doesn't mean it's over. I will have visits with my doctor weekly until at least the beginning of June. That in addition I'll have blood draws and bone marrow biopsies along with whatever else they throw me. But for now, I have no hardware in me and I'm at home. What could be better?

I'm REALLY home!!

Yesterday I got my IGG infusion and after all my concerns about the side effects (fever, chills, rigors - just like when I went septic and into ICU) I'm happy to say I had no problems! They're still having problems taking my blood from my new line, but my pal Tim in Blood Draw makes it work every time. After the infusion I had the dressing changed on my line and they told us we were good to leave and head home. So that's what we did today! It feels wonderful to be home but also I'm kind of restless with all the things I would like to catch up on. But I know I can only do very little at a time so I just have to keep reminding myself. Not only that, but I do a bit and I have to rest for a while. Tomorrow I have three appointments at the clinic and the plan is to take my line out. While that will be a good thing, again it makes me nervous that they will take it out without any drugs or anything. I say they're going to yank it out, Marc says they will remove it. We'll see......

Ready for Monday

Went to the clinic today and got my schedule for Monday. I will begin my infusion at 9am and should finish it by 3pm. Then I have a clinic visit as a follow up. Since it's dry and kind of sunny today we're going to try going for a walk across the street at Lake Union. I just have to remember however far we go, I also have to get back! Probably won't blog tomorrow so Happy Easter to everyone and thanks for everything!!!

Still Low

Our clinic visit today was good but uneventful. The blood culture results were still not available and would not be until later in the day. But all vital signs and lab results were good and stable. I got a call late this afternoon and got the word that my immunoglobulin number had gone down further. This means that on Monday I will get an infusion of immunoglobulin which has some unpleasant side effects some of which I've already experienced. They say it takes about 6 hours for the infusion which does not include the premedication process. Since I received this message on my voicemail, I don't know what the follow-up will be. I will be sure to call up there tomorrow to get the details, but it really doesn't sound like a big deal. We were hoping to be homeward bound this weekend, but will probably stay at the hotel until at least Tuesday just to be safe.

No News Today

Thought maybe today was the day they would tell me when I was getting released, but my clinic visit got cancelled. My doc called and said my immunoglobulin’s were lower on my last blood test and they wanted to retest and make sure they didn’t have to give me more before they pulled the catheter from my neck. So I had to go up and give up about 7 tubes of blood so they could run all their cultures and now I have a clinic visit tomorrow at 9am. I’m feeling good and antsy to go home. I would love to be home this weekend, but I’m not pressuring them. Yesterday we had a visit with the nutritionist and I need more protein which really isn’t a surprise. We’re eating a lot of beans and my diet is becoming more solid rather than the soups. After that was the Discharge Class – what a snoozer!!! The lady instructing basically lost the interest of everyone in the room within the first 10 minutes. Much easier to read the information than to listen to her for an hour!

Days are good

Sunday was another good day. Mary and Don came over and took care of me and my pump. I felt really good. Monday went in to the clinic early for a blood draw followed by a bone marrow biopsy. Thankfully that all went pretty smoothly. I had to go back for a clinic visit later in the afternoon but they had no news and all went well. Then about 3:30am today Marc woke up and found that I was warm. So we started taking the temperature which varied from 100.4 to 99.7 over a three-four hour period. Again I felt fine, just wanted to go back to sleep. Continued to monitor the temp throughout the day and the highest it got was 99.7. The clinic's marker is 100.4 before we are to call in and tell them what's going on. Hopefully we will have another uneventful night and I just have a couple of classes to attend tomorrow.

Good Day

Felt really good today. Had a blood draw and clinic visit this afternoon. Went to blood draw and they couldn't figure out what type of port I had in my neck. After much discussion, they didn't draw the blood but instead sent me upstairs to confirm the correct type of port since each type has a different type of flush and amount of Heperin to insert in the line. My temperature was perfect, blood gas good and the blood pressure ok. They looked at the entry point from my old Hickman and said it was probably 95% healed :) The new port is again in a funky place in my neck and very difficult to shower with. So they gave me all kinds of gadgets, tape and films to cover it and insist it must be kept dry. I'm kind of tired of waking and finding my ports in unique places that even baffle the nurses and doctors. All in all, the visit was good and I had my visit for tomorrow eliminated! Mary was my designated nurse today and did a fine job while John had most of the day off and Connie helped out at the house.

I'm Out (Again)

How ironic - last night I watched one of my favorite shows end (ER) while still in the hospital. I felt a couple of parallels with the shows and it was kind of scarey at some points. I got released again today and I'm feeling really good. Connie noticed I had a much more confident walk as we re-entered the hotel. I have this new port sticking out the side of my neck which is weird and makes me very conscious of moving my head. It doesn't hurt, just looks like I'm either Frankenstein or wearing some very funky earring. I go back to SCCA tomorrow for a blood draw and clinic visit and the same on Sunday. Monday they have me scheduled for another bone marrow biopsy. It just never ends. But this time I definitely feel stronger and am determined not to go back to the hospital (unless I'm visiting my favorite nurses). I am at day +28 and am scheduled to have a discharge discussion this coming week. Thank you for all your thoughts and prayers. I know it helped to fight the fevers and make me stronger.

New port

Today Judy's Hickman was removed and replaced by another type. The original plan was changed and a different type was installed in the side of her neck. It will be tough to hide. Hopes are that the fevers will go away. They sent the entire Hickman to infectious diseases to culture, should know more in the next couple of days. She's tired of being in the hospital but also knows the risks at this point. She rapidly approaching day + 30 and that is a significant milestone. Let's keep our fingers crossed that this the last we see of fevers and she is able to get on with the recovery.

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.

Tonight we start

Tonight I get the beginnings of my chemo for tomorrow. They will give me a large dose of prednisone at midnight after they take blood. It has to be given 12 hours before they start the chemo and again 30 minutes prior to chemo. The scheduled time to start the infusion is noon and it should take about 2-4 hours to complete it. My platelets are low today meaning that my immune system is already going down. Should be down significantly by this time tomorrow. Marc and I got a surprise visit from Amy and Sam today and we spent the afternoon visiting with them. It was a nice visit and took my mind off of what's to come.

Another delay?

On Tuesday my research nurse, Sally, told me that my Geiger number would not be down to 2 until 8pm on Wednesday (the day I was scheduled to get my stem cells back). She also told me that the type of transplant I'm getting (auto) is not done at night therefore I would get my cells back on Thursday. Since then I have asked the doctor and several nurses if we were going to set back the day to start chemo to Sunday instead of Saturday so that I would not have two days rest between the chemo and the transplant. They have told me repeatedly that this is not a big deal and the chemo would take place tomorrow and Monday as planned with my cells being returned on Thursday. So mentally, I've geared up to get this thing moving tomorrow - then my nurse for today informs me at about 6pm that the orders have been changed and the chemo won't start until Sunday! I'm frustrated that it took that long for them to decide this and for them to tell me. I'm bored as can be and tired of sitting around - that's not me! I go for walks now that I am free but the halls are getting pretty old. Marc came and I got to hug him and I could have done that forever. Deb came to visit and we enjoyed a lengthy chat. It was a good time and made the afternoon disappear. I want to get this thing going!!!

New Surroundings

It was a quick swift move from isolation to my new "normal" room at about 9am today. All I was able to take with me was my laptop, glasses, and the clothes that I wore in to the hospital which had been kept in a closed closet. Feels odd to be back in the normal world without plastic surroundings, plastic rustling on the phone when I'm on it, and plastic on the floor. The good side is I don't have to squirt iodine in the toilet each time I use it any more. It's kind of weird but it took me a while to actually touch things in my room after being in isolation. But now I get a real hospital tray with real plates and real silverware. No more cardboard trays, Chinet plates and plastic utensils for me! AND...I can close my door if I choose to. On the medical side of things, they had some initial problems taking blood from one of my lines but with a little work, out it came! I didn't want to know so I didn't ask what they would do if it didn't work. After they checked me out today they found my tongue is starting to show signs of the mucositis starting - oh boy here it comes. Still on schedule to start the chemo on Saturday.

Bonus post - New Phone & Room Numbers

Just got moved and settled into my new room. Still working out the details in here but here's the info:
Room 7234 Phone #206-598-7620

Last night in isolation

Had a new different nurse today that did things a little differently than the rest of them. She came two hours later than the others have, had me check my vitals and said she would be right back then returned two hours later. When she brought my medications they were all still in their packages (everyone else brings them in a small cup ready to go). This would not be a normal issue, but I've been in here for a week now and my garbage cans are quite full (and not smelling great). All in all, she came to my door a total of three times for the entire day. Good thing I didn't need anything. On the up side, I had two great visits today from my special brother-in-laws - John and Mark. It was great to see them both and we each had a good time. Somehow, I must have slipped through the cracks today and they did not come to take my Geiger reading. I asked about it late afternoon and was told that by their calculations it didn't need to be done because I'd be ready. The numbers are pretty important to me and I would have liked to have known where they were at. Seven is the number I need to get out of isolation, but two is the number I need to get to (or below) to get my stem cells back. I am scheduled to get out tomorrow but they are full right now and waiting for a room on this floor for me. May not be first thing in the morning but I will be sure to post my new phone number and room number as soon as it's all figured out.

Numbers are shifting

Slept well last night even with all the comings and goings next door. Today was the day the dressing on my Hickman needed to be changed and I, of course, was not allowed to do it. My nurse had me go up to the shield and she stood on the other side and changed it from there. That was the closest I've been to anyone in almost a week. Shortly after that the best thing happened...the Geiger counter lady appeared. My number is now down to 12.8! BUT...I got a call about an hour later and they told me I would be down to 7 at 8am on Thursday!!! So that's the day I will be out of isolation and in a normal room and back around people. The not so great news was that I would not reach the number 2 until about 8pm on Wednesday, March 4th. Unfortunately, I can't have my stem cells back until I'm at 2 and they won't give me the infusion at night so I won't get my stem cells until Thursday, the 5th. Naturally I won't just be sitting idly waiting for the stem cells. First I have to get two mega doses of Chemo with a day of rest between each dose. That should start this Saturday. That's when I will probably feel the worst of it all. Marc mentioned to my doctor at SCCA that since I tolerated the R-CHOP chemo treatment pretty well, could we assume I will do all right with this one as well? Her response was the R-CHOP was like getting hit by a truck. These drugs will be like getting hit by a train.
Oh Boy. Marc and Jen came to visit tonight and as always it was great to see them. I am so ready to be close to them again.

Number seven is still a bit away

Since I posted pictures yesterday, I forgot to give an update. The nausea seems to be a slight ongoing problem, but somewhat kept under control with medication. Today was the first day since Friday that I kept everything in. Other than that I feel good but, of course, bored. I applied my MacIver skills and worked on the bike some more and can now ride it with little difficulty. Diana came to visit yesterday and brought fresh reading material. Marc came and spent several hours with me as well. Kind of tough to visit when he has to sit at least 10 feet from my door and I'm 10 feet away from the door on the inside. I'm sleeping pretty good - if only they would stop interrupting me for my vital signs every 4 hours. The garbage is starting to accumulate but they've graciously given me more garbage bags to tie off the full ones. I have a new neighbor who I think is getting his transplant tomorrow. LOTS of people in and out of his room throughout the day and night. They didn't take my Geiger reading over the weekend, so today it was down to 18.6 - still quite a way to 7.

Pictures of UW isolation room

The lead shield that blocks my doorway. The actual door never closes

My bed with a great view you can't because of the sun

General Equipment in room plus my sink

Bathroom with glowing toilet

If you look closely you will see that most everything is covered in plastic and blue duct tape. This includes the faucets, toilet, all shelving, all tables and the floor.

Saturday in the hospital

Slept much better last night without the IV hooked up. They still had to wake me at 4:00 am to have me take my vital signs. I've been a little concerned because my blood pressure has been running high for me. The nurses said it could be because of the radiation or because of the volumes of fluid they've been pumping into me. Thankfully the numbers have gone down today and are almost back to my normal. Marc came and stayed with me for several hours and gave me a update on our bathroom work. It's kind of tough because this is the type of stuff we do and I can't be there to help. John and Connie came by for their second visit with more things to keep me occupied. That was really nice. I'm meeting a lot of nice people who are in here for transplants. They have already received their transplants and are now doing their exercise by walking laps around the halls. Some are from here, many are from throughout the country.

Kind of better today

The day actually went by pretty quickly. I had quite a few calls and talked with some friends on the computer. Did my "laps" and generally feel pretty good. Highlight of the day was when they disconnected me from my IV. Now I can move freely about my room. Low point of the day was when I got nauseous when breakfast came. Luckily they have good drugs to make it go away quickly. My neighbor got to move to a regular room this afternoon. I was envious. Amazing what a joy it will be when it's me! Not for a bit though...my Geiger reading today was down to 36 which still seems like an eternity from my magic number of 7. I hear they'll take a couple more readings and by Tuesday they should be able to tell me when I get to move out.

I'm Bored (already)

There's only so much you can do in a hospital room. Yes, I got the bike but it's useless. Can't adjust the length so I would have to sit at the edge of the seat to reach the pedals. And trying to pedal is a joke - it's so rough like it doesn't have a belt (hurkin & jerkin). That's not happening and it can't be removed from my room as it's contaminated. So for exercise, I pace back and forth across my room like a caged lion! Takes me 6 steps to cross the room. I do my "laps" several times a day for 30 - 45 minutes. It's a good thing I'm at the end of the hall or someone walking by would think I'm nuts. I'm not using the VCR but they do have their own movie channel. Unfortunately, the schedule they gave me is old and they don't have a current one. This would not be a problem if the movies started on the hour or so, but they start at various times. The food is actually pretty good and I have a five page menu to choose from with resturant quality. I didn't get much sleep last night because my pump alarm kept going off plus they had to come and take my vital signs every few hours. Not to mention the small bed and lack of a warm body by my side. My Geiger counter number went down to 47 and I had hoped it would be lower. They have to take the reading at least once more before they can determine how long I have to be in here. So far I'm feeling good but they said any side effects wouldn't appear for a few days. Keeping our fingers crossed!

I'm Glowing

It was really tough saying goodbye to Jen and the animals early this morning. Still trying to comprehend that I won't be home for at least 2 months. Finally got the show on the road and now it's a countdown until I return with a healthy immune system. After all the routine questions and pre-meds, they started infusing the Bexxar at about 11:30am. Didn't feel a thing. They have me hooked with an IV now, but it's just to keep fluids flowing through me. The IV should only be for a couple days. They say I may have some nausea but usually IF that happens, it doesn't come until a couple days after infusion. So far I feel fine. Shelly came with her Geiger counter and measured my radioactive level to determine my baseline. She gave me a yardstick and told me to stand at the end of it. The reading she got was 60 milligrams per hour at 1 meter. I'm told that it will go down quickly for the first couple of days then it slows down. I can't get out of isolation until my number is down to 7. I took some pictures of my room and as soon as I figure it out, I'll post them. I can't have my cell phone in here but I do have a direct line which is 206-598-7614. If we're still on schedule, I'm down to 228 hours until I'm out of isolation! Hope I get some sleep tonight without Marc by my side. (PS---I got the bike in my room!)

Day before my life comes to a screeching pause

Kind of a joyous/sad day since it was my last visit to SCCA for probably at least 5 weeks. Since I've been down there most days since December 31st, it will be different not greeting the parking attendant (and paying $4), getting screened for cold symptoms, not leaving my blood samples, riding the elevator up and down several times a day and challenging the scheduler. My team has changed several times with different doctors and nurses, but Kerry (my physicians assistant) has remained constant throughout. He's pretty good and can match my quirky nature. His rotation will change the beginning of March and he will join me again at UW. Had my HAMA test, chest xray and last clinic visit and since I haven't received a update phone call, I assume my test was negative for the mouse antibody and I now just have to show up at 8am tomorrow at UW for my admittance. It's all pretty weird to try to put your life together but also on hold for at least 2 months. I look around my house and it's hard to believe I won't be here for a while. I have stayed awake till the wee hours for the past couple of nights just taking in the surroundings of my bedroom and listening to Marc sleep. After 28 years, I can't imagine being without him for this length of time and sleeping alone. I'm down to 252 hours from right now until they have me scheduled for release from isolation.

Last Gamma Scan

Had the last of my gamma scans today. I have passed all my tests and been cleared to proceed with the radiation and transplant. The only possible hurdle I have left is to pass the HAMA blood test next week. This is a screening to see if I have a mouse antibody living in my system. I've had this test done a couple of weeks ago and it was negative, but they need to re-check to see if it's changed and make sure I don't test positive. Evidentially it has happened on a rare occassion that you can acquire this antibody as a result of the test dose of radiation I received last week. It's not very common so hopefully it won't become an issue. If it does, things will come to a stop and we'll have to determine another path for me to go down in place of this type of radiation therapy. We'll deal with that next week. For the meantime, I have a four day weekend with no medical visits!!

Thought we were done with the scheduling issues

Yet another gamma scan at UW to start off the day. Finished within a half hour today then it was off to SCCA for my clinic visit which was an hour later (at 10:30). We took our time and the scenic route and still arrived a half hour early. Marc made some calls and did some work from the car while we waited to enter the parking garage. Made our way to the 6th floor (transplant center) and was promptly handed a new schedule which had me hanging around there for a blood draw at 12:45pm. Needless to say this didn't make me too happy since my clinic visit would be over by 11:00am. I felt this was a good time to inform them that I only had a week left until I entered the hospital and my freedom would be extremely limited for the next several months. I had no intention of wasting almost two hours waiting around to draw my blood. My appointment was immediately changed to 11:15 :) The clinic visit went well and all they really did was change my dressing and go over all the same basic questions. Now we're in the countdown to my admit date next Wednesday. I think they will not miss me at SCCA.

More gamma scans

Woke up with yet more snow on the ground today. Luckily it wasn't on the roads so again we trekked up to UWMC for more gamma scans. They take four scans which takes about 40 minutes including the time it takes to place the machine in position. Since they never come and get you at your appointment time, this caused us to be slightly over an hour in the parking garage. Silly me - I would think that with the amount of money they collect for all these medical procedures and doctor visits, they might have pity on the finances of those who have to continuously have endless visits and have free parking. Obviously they don't share my opinion. SCCA is a deal as their parking maxes out at $4.00 for any time over two hours. UW is $7.00 for two hours or more. What a rip...

Faint Glow from Maple Valley

Last night I told Marc I didn't want to go tomorrow. After having the day off and enjoying some time with friends, I resented having to give up another day to battle this beast. But my better half took over and we trudged out before dawn for my 8am appointment - so much for trying to sleep in. Arrived at 8 am to receive my test dose of the radioactive antibody and a tracer element. Since it went through my Hickman, I didn't feel a thing. Usually there are no side effects from this and I haven't experienced any. The radioactive stuff was dispensed automatically through a unit which slowly depressed the syringe into my tube. I'd never seen anything like this before. After we finished there a patient in isolation agreed to let me visit see the isolation room where I will be. I didn't go in, just looked from the hallway. It looked just like the pictures I'd seen and about as big (not very) as I imagined. The man who was in there was being released from the room today so he was quite chipper! He said it wasn't too bad but he was definitely ready to rejoin the regular population. Next stop for me was down to radiation and more gamma scans. I don't mind these as they are completely painless and I just have to lie there. Today the tech turned down the lights and put on a little music - very relaxing!

Going to the U

Today was the first day at UW Medical Center. We went to Nuclear Medicine for a gamma scan. It was nothing too traumatic. They had me lie down on the "table" (like a CT scan slab) then lowered this piece of equipment that was about 16" square and flat down to within inches from my face. All I had to do was lie still for each test which lasted between 2 - 5 minutes each. The first test was done without solution to get my baseline. The following tests were done with different dyes to determine how much solution went into my vital organs (liver, kidney, heart and spleen - if I had one). This will determine how much of the radioactive antibody to give me without doing "too much" damage to the rest of me! If nothing comes up, I should have tomorrow off. Friday I get the actual test dose of the radiation. Today I started taking iodine drops which is supposed to protect my thyroid. Bizarre stuff - I take 5 drops in a small (1/4") amount of juice followed by water. It goes down so fast it really doesn't taste bad, but if I use the same glass for the water it leaves a very salty taste. They also warned me that this stuff stains - bad - so I have to be very careful. This said, they told me that this "should" protect it during the treatment but most likely it will burn out and I will have to take a pill everyday for the rest of my life to keep it working. Two weeks from today will be the day I go into the hospital for the party to begin - IF all goes as planned!

So Much For a Day Off....

Thought I was going to be SCCA free today - no such luck. As I got out of bed today we noticed some fresh blood around the Hickman entry site. Marc called down to SCCA and they said to get in immediately (as a precaution). Turns out when the nurse was observing yesterday she tried to clean a spot she thought was a clot at the entry site. Since it was disturbed and she didn't completely remove it, it became aggitated and bled under the scab. Thankfully no big deal but something that needed to be looked at. It's all good.

Another Lesson

Today was a recap on how to care for my Hickman port. Since we were a little distracted during the first lesson, I thought we should go over it again. Difference this time is that I asked if Marc could change the dressing under the nurses observation. With steady hands, he worked like a pro. If he got a few changes under his belt at home, he would have been great at it. As it turns out, because of it's location, the nurse has recommended that it be changed by the nurses to ensure it is completely sealed. We both agreed (although he did a fine job!). Off tomorrow!!

Good day - and night

Another easy day with just a blood draw on the schedule. Did go up and get checked by a doctor though since I developed a rash near the Hickman. They didn't see it as a problem - just something to watch. All is good! Enjoyed a great dinner and great company with Mary and Don (with his famous lasagna), Brian, John and Connie (with homemade bread and brownies). Nice, laid back evening. Great day and night!

Easy Day!

Today was a breeze. Jane drove me to SCCA for a blood draw and that was it! The body is feeling much better with the end of the growth factor shots.

Another data review

Met with the nurse from UW today that runs the isolation room. She was able to answer my questions which included: can I take in books and needlework - yes but they will be contaminated and have to be held for up to six months until they are no longer radioactive. Can I take in my laptop - yes, but it has to be wrapped in plastic, cannot be on my lap and I have to use gloves. How does my food get into my room - there's a lead lined doorway that they will put my food into and I will pick up. One interesting thing - anything that comes in my room stays in my room until I leave including garbage. So any food I don't eat, I have to put in a Ziploc bag (which I have to provide) and keep it in a open garbage can in my room. With all the extreme cautions we have to take in keeping my surroundings bacteria and germ free, it just doesn't make sense to me to keep garbage in my room for up to two weeks! Let's hope the radioactive stuff leaves my body in a timely manner. The nurse did bring pictures of the room and that was helpful for me mentally. I was also told there would be a exercise bike in my room but that's not quite true. There is one exercise bike available to the two isolation rooms but it is a first come first serve basis. So if the other room is occupied the day before me and they want it, I guess I'll just walk circles around my room while watching a VHS movie (they only have VHS players) to get my exercise (which they strongly encourage you to get plenty of exercise!?!). After the nurse we waited for 45 minutes (after my appointment time) for the doctor to arrive to go through the data review and sign consent forms. She explained all the forms but unless you're a doctor, it's hard to keep up and follow along. I think I got it all and signed the forms I selected.

10.5 Million stem cells - We're there!!!

NO MORE SHOTS!!! Had my last three growth factor shots this morning for a total of 30 shots in my tummy over the last 5 days. Thankfully I no longer have to watch the nurses wind up and stick me then inject it slooooowly. Don't want to ever have to repeat that! Received more platelets this today as my numbers were again low. Then it was off to apheresis for more collection. The doctor came in and said today would be the last day and that we were really close to the goal. My body feels good but I'm very tired tonight. Heading off to bed.......

Collection - Day 2

Showed up today at 7:15 am, waited for blood draw. Got to infusion at 7:45 to receive platelets and - SURPRISE - 3 more growth factor shots. I feel like the shot up cartoon character who drinks a glass of water and it all comes out of the holes in his body. Up to 24 shots and my tummy is bruised and showing the grief I've put it through. After the infusion, I was back at apheresis (collection) to spend another 5 hours on the machine. Got home around 3pm and waited for them to call me back to let me know if I had to get more shots tonight and do more collection tomorrow. The call came in at 7:30pm that I needed more so off we went back down to SCCA to get poked 3 more times (up to 27 now if you're counting). Yesterday they collected 3.9 million cells, today it was 3.7 million. They want to collect between 8-10 million stem cells from me so back down for another day tomorrow. We're "close enough" but it would be best if we had a few more. Since I have no plans of getting another 30 shots of the growth factor, we decided just to go in tomorrow and collect the additional amount needed. Did get to talk to the nurse who is in charge of the isolation rooms at UW and she was able to answer some of my questions. I will actually get to meet her on Thursday when I have my next data review.

Not enough :(

Arrived bright and early (7:30am) at SCCA for my stem cell collection day. I've been told this can take anywhere from one day to a couple of weeks. It all depends on how much the body is putting out. We knew that they were going with the high flow collection today and hopeful it would be enough, but it wasn't. I received yet another three growth factor injections (now totalling 21) and then they hooked me up to the machine for collection. One great thing about the Hickman is I didn't feel a thing! Just had to try not to watch my blood flowing out in the tubes, through the machine, then back in all day. Finished up feeling pretty good, but still stiff in the bones. They called this afternoon to tell me it wasn't enough and I get to go back tomorrow. However, I don't have to go back for more growth factor shots tonight (they will give them again in the morning). Let's hope they get enough tomorrow!

Bone pain!

Got out of bed for my morning visit today and OUCH! The bones are definitely talking. Rib bones, pelvic, breast and head all are feeling the expansion in the marrow. Think of it as just nasty flu-like aches but pretty much limited to the bones. Definitely moving slowly today. Tired of getting poked - between Friday, Saturday and today, I've been stuck 18 times in my tummy (they have to inject the growth factor in fatty tissue and I was able to supply plenty). Hopefully after the six shots tomorrow it will be the last day of those injections. On the good side, my white blood numbers have skyrocketed - literally! That's what we were hoping for. Plan for tomorrow is to try to collect the entire amount of stem cells. Could take up to six hours to complete the process. If not, I go back on Tuesday, Wednesday, Thursday and Friday to keep collecting until I have enough.

First weekend visits

After yesterday, today was pretty uneventful. Did my twice daily visit to receive my growth factor injections. Same thing tomorrow. The nurse I had this evening told me some of the people she had met or heard came thru SCCA: Jonathan Lester (baseball player), one of the Rockefellers, Jose Carreras (one of the three tenors), visits by Fabio (make a wish visit) and Ringo Starr (visiting his ex-wife). Monday we start bright and early at 7:30am with the collection of my stem cells.

SCCA knows the Taylors

Wow! What a time we had today. Jen drove me to SCCA. Marc, Sharon, John and Connie met us there to attend my first appointment which was instructions on how to maintain my Hickman Port (the tube coming out of my chest). After my blood draw (which no longer requires me to get poked) we all piled into the elevator for the trip to the transplant clinic. As we emerged from the elevator, Jen felt dizzy and sat down in a chair. Within moments she had passed out! After what seemed like an eternity, the medical staff surrounded her and started taking her vital signs which were quite low. Thankfully, she woke up on her own and they took her in a wheelchair to one of the exam rooms. Several blood pressure readings later, she was finally starting to stabilize. However, they kept her lying in the bed in the room next to me for my entire time there. Thank God Connie came and was able to stay with Jen and keep things under control in her room. The rest of us went to my room next door and started with the instructions. LOTS of stuff to go over and remember and it seemed a bit overwhelming but I thought we were doing ok.....until my cousin felt light and needed to take a seat for a few minutes. Thankfully, it was within seconds before we had her back and she recovered quickly. Next, Marc and John were given instructions on how to give my growth factor shots at home to alleviate two daily trips down to the clinic for the next several days. With all the excitement we already had, they scrubbed with the cleanser and were filling their needles when Marc poked himself in the finger with the growth factor. That was about the time we decided that after the events of the morning, we would gladly let them give me my morning and evening shot. So we finished up there, Connie took Jen's car home, Marc resumed work, and John took Jen and me to her doctor to get checked out (per the clinic's instructions). We spent two and a half hours at the doctor while they ran her through all the tests and they all came out clear. She's fine but had to spend Friday night at home with us. Got to be home for a hour and a half before we were on the road to SCCA again for my evening injection. I'm beat, but feeling good. Too much excitement for one day - don't ever want to repeat this one!

Meet Mr. Hickman

Today I learned that the port/cathetar I was having placed is actually named after a real doctor who invented the device and who also practiced this procedure in the room I was being worked on. His name is Dr. Hickman and he placed many of these devices in many patients up until he retired at 83 two years ago. That said, I had my Hickman placed in today and all went well. The doctor was fantastic and my nurse, PJ, explained everything in detail so there would be no surprises. She was unlike any nurse I had experienced here before and also she's a two time cancer survivor. Like the bone marrow biopsy received previously, I was sedated and went home and slept for several hours. They have me minimally covered in gauze and tape so I can't actually see the incisions. I can't feel where the port comes out, but I can feel where a small incision was made on my neck near my jugular vein. They use this area to make the turn to get the tube down where it needs to go. Because there is a large major muscle there that they usually have to mess with, it's a little tender, but expected. Just feels a little tight and like I slept on my neck crooked. All in all, I'm feeling good and expect to sleep well tonight.

Data Review

Today we met with Dr. Holmberg for our data review. Looking over all the tests, it appears I am quite healthy - with one small exception - Lymphoma. No big surprises - healthy heart, liver, good, lungs good and CT scan all shows good. So now we move forward and I get my Hickman cathetar put in tomorrow. I'm not nervous about the procedure of putting it in, but I'm concerned about the care required afterward. No one on my medical team is at all concerned about this but I have my reservations. According to them, life should continue as usual and I will have minimal limitations. The good thing about todays visit was that my schedule only changed three times in the two hours I was there! Unless I get a call with a change in the wee hours of the night, my appointment for tomorrow is at 9:30 am. Looks like I will be there every day from here on out until I get admitted to the hospital and some days it will be twice a day. Thank God gas prices went down!

"Vacation"

Got the call that my data review is next Wednesday so they must have gotten confirmation from the insurance company. Thursday I'm scheduled to get my line placement in my chest/shoulder. After that it's rock and roll. So I'm on "vacation" with no appointments until next week. Celebrate!!

Tuesday, January 13, 2009
Education
Todays is the only day with appointments scheduled at SCCA this week (so far - always subject to change). Since I broke another tooth last night, the day started with a trip to oral medicine to visit with the dentist. (Chemo must weaken the teeth since I've never broken a tooth in my life.) This man is very good at explaining things but obviously doesn't have much respect for time. Same as last week, for a 5 minute appointment it took me 50 minutes to get out of his office. I was supposed to take the Food Safety Class at 11:30 am but ended up catching the last 10 minutes of the class after I was released from oral medicine. Thankfully, Marc, Jen, Sharon, John and Connie were able to take the entire class so they got the full scope. The class was basically how to prepare my food, what I should avoid, and how to keep me healthy. Then we were off to the transplant clinic for my weekly visit. Again, after waiting 20 minutes, I had to go to the desk to let them know I was supposed to be in another class at 1pm so I was really hoping to get in for this appointment. All went well except the blood pressure was a little high for me - Go Figure!!! Marc and I made it to the Managing Home Care class only 15 minutes late. Again, Jen, Sharon, John and Connie were there for the entire class and hopefully able to absorb all that this will entail. Soooo much information - hope we get this all right! The insurance company called on my way out the door this morning and have approved my transplant (thank God). As soon as SCCA receives written confirmation, a data review meeting will be scheduled with my team to go over the findings from my tests. Then it's full speed ahead!

Friday, January 09, 2009
Only one appt today
As part of the protocal for my study, all CT and PET scans have to be done at First Hill Medical Center for continuity. So today I had a "field trip" and got to go there instead of SCCA. Barb and Jane came over and took me to my appointment which was great. Got to visit with two special friends and laughed a lot. They dropped me off with Marc at the warehouse and we went to a shipyard and unloaded and stacked three pallets of filters. Looks like I've had my last test. Next week is caregiver training and food safety classes and data review. If I pass all the tests, then it's time to rock and roll!

Thursday, January 08, 2009
Long frustrating day
The rain and flooding made for a hour and a half commute to get to SCCA for a 8am appointment. Today we started off in oral medicine for a exam. Dentist was half hour late coming in for my exam which set the tone for the day. Next came the mammogram to which I was a half hour late! Go figure. After sitting in the "holding cell" (waiting cubicle) for 25 minutes, I poked my head (and minimally dressed body) in the hall to find out when they planned on making this procedure happen since I was now 15 minutes late for my next appointment. Shortly thereafter, I was wisked in and 30 minutes later, was on my way to my next appointment with my nurse (who isn't really my nurse because my nurse is in Cancun). After that was said and done, I was off to do pulmonary testing which was kind of bizarre. Lots of blowing into the machine and holding my breath until I was almost blue! Off to the last appointment - a MUGA (heart) test. Done at 3pm today - BUT - realized during the day that my CT scan scheduled for Friday was totally screwed up thanks to my incompetent scheduler so had to take that matter into our my own hands. Ended up extending our day by driving over to where this procedure was to be done and working with their staff to get things done efficiently. By now it was raining again and it only took us another hour and a half to get home after all the detours. Frustrating day :(

Wednesday, January 07, 2009
Another Visit
Today was pretty much uneventful. Met with the gynocologist today - fun - then with a social worker (waste of time). Felt like I was being analyzed by a stranger who was gaining knowledge about me that was quite personal and, in my opinion, did not pertain to the transplant. I guess they need to know your background, frame of mind, and relationships to get the full picture. Probably beneficial to some, I felt I had better things I could be doing. On a high note, Kerry (my Physicians Assistant) stopped by me and whispered to me that my spinal fluid was clear! That means I passed another hurdle. Tomorrow is a full day starting at 8am and ending at 4pm. Hope it's productive!

Tuesday, January 06, 2009
More Tests
My brother-in-law John had his first visit to SCCA yesterday as he was my designated driver to have a bone marrow biopsy and a spinal tap. My buddy Tim was not available to start my IV and take my blood so I got someone different who, naturally, had some difficulty getting my vein stuck. The procedure went fine and they prescribed soda pop for me to drink as the caffene is supposed to greatly reduce or eliminate the headache caused by the spinal tap. I hadn't had pop in quite a few years so this was a bit weird for me but evidentially it worked as I haven't had a headache. My back is fine except for the three holes they put in it and I can move pretty well, I just have to remember it's there and be cautious. Marc was there when I woke up and I really don't remember the ride home but he's very patient about letting me repeat myself and my stories over and over. Didn't write yesterday because it probably wouldn't have made any sense. Off from SCCA today, but back bright and early tomorrow. Oh what fun we are having!

Friday, January 02, 2009
Transplant preparation - Visit 2
Whew-hew here we go! Today started at SCCA with a visit to the Oral Medicine floor for the baseline Xrays. From there I went to radiology and had a Xray of my chest, then onto visit with the nutritionist to tell me what I already knew about eating healthy. Next appointment was to see the Finance Representative followed by a EKG. The day ended with a conference with the attending doctor but I don't really know why I met him since he will only be on rotation until next Wednesday when I get to meet the next doctor. Scheduling wasn't too bad - not too much lag time today and we accomplished all six of these appointments within a four hour period. We were able to visit two possibilities for housing during my "free time" today. Still looking. Scheduling for next week was kind of ugly but after I threw a hissy-fit, it all worked out just fine. Marc was very tolerant and patient throughout my episodes.

Wednesday, December 31, 2008
Transplant - Day 1
Lets end the year with a new beginning. Today we met with two of my people on my transplant team - Kerry and Dot. Again we started with confusion about where I was to go and when I was to be there, but it all ended well. Tim again drew my blood (he's the best), but my vein decided to not cooperate after the 6th vial. Had to poke me again! Almost passed out but recovered quickly. Get to have tomorrow off - sort of. Have to read the consent forms (all of the pile which is about 1 inch thick) before next visit on Friday. Happy New Year!