The Mystery Continues...

There’s not much to report this time. All the tests from the last bronchoscope I had done have come back negative, so the white stuff in my lungs continues to be a mystery. I started a new antibiotic for a rare fungal infection two nights ago. The drug is administered over six hours with one hour of fluids before and after. There are major side effects to it, so I’m also given pre-meds. The first night I did pretty well, but last night I had rigors and high fevers so I had to get Demerol.

I got moved to a different unit, which I’m happy about. I’m now in the cancer unit where the nurses are more knowledgeable and nicer. This is familiar territory for me. I still have a single room, but it’s half the size of the one I was in before. I can barely squeeze into the bathroom because Chris’ bed takes up so much space.

My breathing continues to get more difficult. Just a trip to the bathroom or down the hall leaves me winded and short of breath. I’m still trying to take several walks a day around the hospital, but it takes a lot of effort. I can also tell that my legs are getting weak from being in bed most of the day.

It appears that I will be having the next bronchoscope this coming Tuesday. I still haven’t met with the throat/neck surgeon, but it appears that he/she has agreed to do the procedure.

Happy New Year's from Stanford!

Bronchoscope Results

My oncologist came in early this morning to discuss the findings of my bronchoscope from yesterday. She was very disappointed with the results. Not only were they not able to get a good sample again, but also it appears as though things have gotten worse. When they went in with the scope they saw several white sticky like blockages. They tried to take one out or at least a big enough sample of one, but were unsuccessful. Nobody really knows what the white things are. At first they thought it could be fungal, but the infectious disease specialists said it looked nothing like fungal and the fungal culture already came back negative. My oncologist still insists that it’s not tumor, because she has never seen anything like it. Basically it’s a big mystery to everyone right now.

The next step now is to get a neck/throat surgeon to do a different type of bronchoscope. In this case they would use a hard tube (instead of a soft/flexible) to go in and see if they can get a sample. This will require general anesthesia. There’s no date set for that procedure yet, especially with the upcoming holiday.

Meanwhile my breathing is getting more impaired. Last night and this morning I had to be on oxygen again since I was short of breath. The pulmonary specialist couldn’t believe that I could breathe on my own considering the amount of blockage.

So of course since things are worse I will not be going home anytime soon. The worst part is that my doctor goes off duty tonight and she will be on vacation for a few days. Now I’ll be dealing with a doctor that doesn’t even know me. She did say that if this stuff does turn out to be tumor I would start Taxol right away regardless of my platelets being low.

Update from Stanford 3

In about two hours I will be having my second bronchoscope in one week. I’m not looking forward to the procedure since it was so traumatic last time, but I’m looking forward to getting it over with soon. The hardest part has not been able to drink/eat since midnight. I’m staying away from the Food Network right now J.

My doctor this morning said that as long as the pulmonary team was in agreement, I would most likely get to go home tomorrow. I will have to continue the antibiotics (orally) at home and the respiratory therapy. Since this could likely happen again (the mucus blockage/buildup in my lungs), I will probably continue the respiratory therapy for a while.

Unfortunately my platelets are too low again to have treatment. My doctor isn’t quite sure why they’re not recuperating since it’s been a while since my dose of Methotrexate. There are several factors that could be causing them not to come up; one that she mentioned was disease in the bone marrow, which of course freaked me out. The only way to find that out is by doing a bone marrow biopsy. She’s not too worried yet and doesn’t want to have me go through that, so we will just wait and hope. It’s frustrating, because this is the only thing stopping from getting chemo right now.

Since I have been off of IV medications/fluids since yesterday I’m feeling much better in regards to my puffiness. I got weighed this morning and I’m still about 8 lbs heavier than usual, but at least I’m seeing some progress in the right direction.

Update from Stanford 2

I hope everyone had a Merry Christmas. We celebrated the best we could (considering the circumstances) from my hospital room. There were a lot of families doing dinner banquets and gift exchanges out in the atrium by the big tree. I did get to see Pebbles and Francesca for a few minutes both Christmas Eve and Christmas Day so I was happy about that.

Last week I had been told that I would most likely have another bronchoscope either today or tomorrow. The pulmonary doctor came this morning and said they wanted to wait a few more days. They want to make sure that my lungs are as clear as possible so they don’t run into the same problem when they go back in. Right now the procedure is scheduled for Thursday afternoon. In the meantime, I will continue with the respiration therapy every six hours.

My oncologist was going to talk to the pulmonary and infectious disease team about doing everything (antibiotics and respiratory therapy) at home so I could be released, although I can’t imagine that they would release me a day early just to come right back. My guess is they will let me go on Thursday after the procedure. As far as chemo goes, she said she would like to try weekly Taxol treatments instead of going back to Methotrexate. She doesn’t want to take the chance of trying Methotrexate again without knowing exactly what all the activity in my lungs is related to (infection, pneumonia, or disease). We may go back to Methotrexate after this has all been cleared up and if the next CT shows that there was no progression, but for now she feels safer trying Taxol. The Taxol is about a one-hour outpatient treatment so at least I won’t have to deal with being in the hospital. I have received one treatment of this chemo before and the main side effect was extreme bone pain. I remember not being able to move from my bed for about 24-48 hours.

I think I’m actually more upset about being here today rather than yesterday. The day after Christmas is my favorite day to hit all the big sales. It’s too bad I can’t escape to Stanford mall for a little while :P

Christmas at Stanford

It will be Christmas at the hospital after all. I kind of expected it. I can’t ever think of a time that I was admitted for something other than chemo and I wasn’t in the hospital for at least a week. We’re all making the best of it. Chris’ parents brought a little fake Snoopy tree into the room and Chris put up some lights. Tomorrow my dad will be bringing Christmas Eve dinner to have here in the room (although I probably won’t participate in the eating). There is also a beautiful tree out in the atrium next to my unit and there have been carolers in the evenings. The rooms are slowly starting to empty out so I’m assuming a lot of people are being discharged just in time.

This morning the pulmonary doctor that did my bronchoscope came to talk to me. She asked me how I was doing and how the procedure had gone. I told her how uncomfortable it was and that I kept asking for additional drugs and they wouldn’t give them to me. She actually had a reasonable explanation for the whole dramatic experience. Usually when they do a bronchoscope they only go into the lungs once or twice; since I had so much thick mucus blockage in both lungs they had to go in a total of five times. By then the drugs were already starting to wear off and they couldn’t give me anymore since they had already given me the maximum for my weight. The procedure usually takes about ten minutes and for me it took close to an hour. Because of all the blockage they weren’t able to get as far/deep as they wanted to and weren’t able to get a sample of the area they needed to. I’m scheduled to have another bronchoscope done either next Tuesday or Wednesday.

Meanwhile the goal is for me to try and excrete as much mucus as possible on my own so they don’t have to do so much when they go in next week. I’ve been given all kinds of respiratory treatments to help with this.

I continue to get puffier and puffier. Today they made me go on the scale and I nearly went into cardiac shock (fortunately I’m in the cardiac unit). I’m approximately nine to ten pounds heavier then when I was admitted on Wednesday!! My arms, hands, fingers, face, and stomach are very swollen. They still won’t give me Lasix due to my blood pressure and because I’m so dehydrated. The reason I’m so dehydrated is because I have full-blown diarrhea from all the antibiotics I’m on. So the only solution is to drink as much as I can and get up and walk around. Well there’s two problems with that: 1) I can barely even take a sip of liquid since I feel so disgusting from being so puffy 2) Walking long distances (further than the room door or bathroom) have become difficult due to my shortness of breath. I know that I always complain about getting puffy and bloated when I’m admitted, but this by far beats all. I literally have water pockets on parts of my body that I didn’t think were possible. I have to hold my belly when I’m walking for fear that it will weigh me down and I’ll do a face plant.

Fortunately the days have managed to go by rather fast due to the number of people visiting and the amount of different teams of doctors coming in throughout the day. I’m actually starting to feel quite exhausted with all the activity. I know it will slow down the next two days as people are celebrating the holidays.

Bronchoscope & Respiratory Therapy

Yesterday afternoon I had my bronchoscope done. This was my third time having this procedure done and by far the worst. The two previous times I don’t remember feeling anything, I simply remember waking up in the recovery room. This time was quite different. From the beginning I knew something was funny when they were starting to do things that I didn’t remember before without putting me out first. Finally asked for Fetanyl (sedation) and they gave me just a little bit. They continued with the procedure without giving me much more and I was awake and felt/saw everything. Because I had a tube in my mouth I couldn’t say anything so I kept raising my hand (that’s what you’re supposed to do to get their attention). They didn’t listen to me so I started to try to talk with the tube in my mouth (which was very painful/uncomfortable). I begged and cried for more Fetanyl, but they didn’t give me any. The whole thing was traumatizing and painful. I could hear/feel them in my lungs doing all kinds of stuff. This morning when I saw one of the pulmonary team specialists I asked her why they hadn’t give me enough drugs and she said it’s up to the doctor doing the procedure. Some like to go more conservative on the drugs. I’m going to make sure I never have that doctor again; no one should have to go through that.

After I got back to my room from the procedure I was starving so I had some soup. About an hour later I got really sick to my stomach and haven’t recovered since. I still also continue to be extremely puffy. My face, hands, fingers, and belly are all very much distended.

The only way I was able to sleep last night was sitting up. Any time I try to lie down I start coughing so much to the point of gagging. I’m better off on a chair then in bed. This morning I had some respiratory therapy and will be continuing that until I get better. This should help with getting rid of all of the mucus in my chest/lungs.

There haven’t been any results back from the bronchoscope (it can take about 48 hrs), however I was told that when they went in they found a lot of mucus blockage. They did get some tissue/cell samples so hopefully we will have a better indication of what is going on, whether there is pneumonia or it’s all disease.

Originally my oncologist was very optimistic about me getting out by Christmas, but at this time it’s looking very unlikely.

Update from Stanford

Finally! It looks as though my blog is working again. I've been sending emails the last few days with updates since my blog was down. Below is the latest update I sent out...

I had a very rough night last night. Around 9:30pm I started having rigors and they had to give me a dose of Demarol (a narcotic) to control them. I had another episode around 2-3am and again had to have more Demarol. About an hour later I spiked a high fever (above 102F), my blood pressure was very low (70/40), and my pulse was high (140). They gave me a bolus of fluids, which has now made me puffy and uncomfortable. Since my blood pressure is still on the low side, they won't give me any Lasix to get rid of the fluids. As usual, I've already gained 2-3 lbs since being admitted yesterday.

This morning I got to see my oncologist. She came by to tell me they were going to do a CT scan. The pulmonary team wants to see the results before deciding for sure whether I need a bronchoscopy or not. If there's no blockage or collapsing of the lung from the pneumonia, they might skip on doing one. My platelets were still on the low side, my white count went up, and my red count is down again. I will be receiving two units of blood shortly. This should help give me a little more energy and raise my blood pressure, but at the same time it will make me puffier. As you can tell by now, there's nothing I hate more than feeling puffy/bloated.

I'm still on IV antibiotics every six hours. It's called Zosyn and is in the Penicillin family. Hopefully the antibiotics will start clearing up my pneumonia soon so I can get back on track with chemo.

The pulmonary team ended up coming this evening and they said they would be moving forward with the bronchoscopy. It's scheduled for 2pm tomorrow, meaning I won't be able to have any food/fluids after midnight. They seem to think that I don't have pneumonia, but rather some other type of infection or progression of my disease. It's crazy having so many people say different things. I honestly don't know whom to believe anymore.

After the pulmonary team, I was seen by the infection disease specialist that I have been following up with the past few months. He went over all kinds of bacteria/viral/fungal infections that could be a possibility. He decided it would be best to add two more antibiotics to my regimen to cover all bases.

Thank you all for your emails and e-cards. I really appreciate all your thoughts and well wishes! If you don't get a reply from me, please know that I really appreciate everything; I'm just too exhausted to write back to everyone individually.

Exhausted

I ended up going back to work Thursday morning to my amazement. I wasn't feeling all that great, but I managed to make it through the entire day. I slept most of the car ride home and took a nap in the evening. Mostly I've been feeling really weak and tired. This morning was also a challenge to get up so I'm definitely looking forward to sleeping in over the weekend.

My doctor emailed me that she wants me to have some lab work done on Sunday or early next week. I feel much better about that, since I felt going until 12/18 was too long.

Back Home

I got the good news this morning. My Methotrexate level was low enough to go home and I was discharged around noon. Before getting to go home however, I had a chest x-ray and nasal swab done. My chest x-ray showed no change since the last CT, however there still appears to be some blockage in my lung (most likely from swollen lymph nodes).

I have a lot of new pills to take. Aside from the oral Leucavorin (which I have to take every six hours), I'm also on antibiotics, and potassium/magnesium. I'm feeling pretty good, except for being quite fatigued. I think this is due to the lack of sleep I got while I was in the hospital. I was able to rest some this afternoon and I'm hoping to get a good night's so I can go into work tomorrow. Even though I worked a lot while in the hospital, I still managed to fall behind and are anxious to get caught back up.

Chemo Going Okay, Roommate Not So Good

I received my first dose of Methotrexate around 6pm Sunday evening. I was given some pre-meds as part of the treatment to eliminate any nausea. So far so good, no nausea or any other side effects that I have noticed. Due to the high levels of fluids that they have been giving me, I have managed to be able to get lasix to try and flush them out of my system. It has been helping quite a bit and I've been spending most of my time in the bathroom. I haven't lost any of the water weight I gained the first few hours I was here, but I haven't gained any new weight either. Because I'm flushing out fluids like crazy, all my electrolytes have been depleted and now I have to get magnesium, potassium, and calcium via IV. My hemoglobin has also continued to drop, which I'm starting to get very worried about. I mentioned it to the nurse practitioner that is monitoring me this morning and she didn't seem to be concerned and said that the fluids could be affecting it (diluting my blood). I'm not sure I'm convinced that this is the case since it started dropping prior to me receiving any fluids.

As planned, I started the Leucavorin that goes along with this chemo 24 hrs after. I'm receiving a dose via IV every six hours. The goal is to get me to a level of 0.05 in my system. That will allow me to be discharged and continue on an oral dose at home. Most people start at a level of around 5.0 and it usually takes about 48 hours to get to the 0.05 level. If all goes well, I may be discharged on Wednesday afternoon/evening.

The nurse practitioner that is monitoring me is a familiar face to me. She was one of my NP's during my 2nd transplant. She's now working in oncology rather than BMT. She had mentioned to me this morning that Dr. Lowsky, my BMT doctor, was pretty involved in the decision of this treatment. She also mentioned that I had been in his thoughts and that he may even have some options for me in the future. He wants me to undergo some blood tests to see what percentage of donor cells are in my body. I don't want to get my hopes up, but there might be some thought of using my donor's frozen cells sometime in the future. I think it all depends on how I respond to this chemo and getting my disease back into control again.

She also introduced me to a young girl who has Hodgkin’s disease and is the room next to me. She will be undergoing an autologous BMT in the near future and I have been giving her some advice and telling her about my experience. As it turns out, we have quite a bit in common and have been enjoying each other’s company. It’s too bad we weren’t put in the same room together.

The biggest challenge with this admission has been my roommate situation. The lady that I'm sharing a room with is newly diagnosed and is in a lot of pain. They don't know what type of cancer she has yet, but apparently it's in the liver, lungs, and bones. She's on morphine 24/7 and she spends most of the night whining/complaining and waking me up to call the nurse because she's not able to. She also isn't able to get up to use the restroom, so she either goes in bed or if I'm lucky enough gets the nurse in on time to use a bedpan. The whole thing has made me a nervous wreck so I'm now sitting outside in the lobby (at 4:45am) trying to distract myself. Moving to another room doesn't look promising since the unit is 100% full. The worst part is I'm not really able to catch up on sleep during the day because I have so much work to do. Today I worked from about 7am - midnight with a few breaks in between.

At Stanford

I was admitted today for my first round of treatment of Methotrexate. Of course when I showed up they didn't have a room for me even though I was on the schedule for 10am. I didn't get into a room until 11:45am. Just as I had anticipated, I'm in a double room. The worst part of it all is I'm on the bad side of the room, which doesn't have a window or door to the bathroom. I'm not even sure if Chris will be able to stay with me tonight.

Right now the plan is for them to start me on fluids and then chemo once my system has been flushed. I'm trying to persuade them into giving me lasix, which will make the fluids that they put in me come out faster. If I even get a slight bit puffy I will be miserable the entire time I'm here and for about a week after I leave the hospital (which will be just in time for me to come back in).

The great news is that Chris was able to borrow a wireless network card from his work, which is allowing me to get high-speed internet access in my room! I'm thrilled so that way I can do all my email and work from my room instead of going accross the hall.