Funeral Service

As per Erika's wishes we will be only having a grave site funeral.

Saturday Feb. 3rd 10am
Gate of Heaven Cemetery
22555 Cristo Rey Dr.
Los Altos, CA 94024
(650) 428-3730
Attire: No black colors.

In lieu of flowers please make a donation check to the Leukemia and Lymphoma Society.

Sleeping Beauty

My Gator Pie is now in heaven, safe with her Mom.

I love you with all my heart and I always will.

Sleeping Beauty

My Gator Pie is now in heaven safe with her Mom.

I love you with all my heart and I always will.

Comfortable

Things have change since the last time I have posted. Erika had a major anxiety attack last night and one this morning and because of the increased pain medication it might have heightened the experience. She was confused, scared and crying, which made me sad because I knew their was nothing that I could do for her. I had to just try to do my best to comfort her and let her know that I loved her and that she was safe and that everything was going to be ok, even though I knew that wasn't true. The doctors and all of us decided that it was time to change her pain medication so that she got a continuous dose all the time to try and make her feel as comfortable as possible. I absolutely do not want her to feel scared anymore. Erika has slept most of the day, from the morning until the evening. She has woken up a couple more times tonight and it seems she is in distress when she wakes up and still in a confused state, so tonight we slightly increased the medication dosage and so far it has seemed to help.

She can still be woken if we really try but at this point I don't want her to feel afraid, so were trying to make as little noise as possible in the room so we don't disturb her. So if you have tried to call the room today, I'm sorry but the phone has been unplugged.

I'll try to keep everyone posted if anything changes and I still plan on writing everyday, although I don't get a chance until real late. Right now were not having any visitors. Now the most important thing is to keep Erika as comfortable as possible during this time. If you feel you need to pray, please pray for that.

Harder to Breathe

This morning when I saw Erika she looked like she had a harder time breathing. The level of her oxygen settings for the past couple of days have been hanging out around a 4 and today they were upwards of 6, the scale being from 0 to 15. I think she was having a little more anxiety than before which was causing her to breathe shorter and faster. The doctors upped her pain medication levels to help compensate for the extra anxiety, but as a result she was a more sleepy than normal. She slept most of the day today. Tonight she has improved a little and has not been using the pain medicine as much and her breathing settings have moved back down to around a 5. Hopefully she will be able to rest a little tonight.

Last night I had the night off and it was the first time I have slept in my bed in a long time. I think I got about 12 hours of sleep and it was a nice needed recharge. I missed seeing the doctors come around again today, but from what my parents told me they seemed to be really nice and comforting.

A couple of days ago we had learned that the lung biopsy, which was taken over a week ago, has some evidence of shingles, which means that she has shingles inside her lungs. That’s somewhat troubling news because it lessens the chance that the doctors are willing to give Erika her next round of chemo, which is scheduled for tomorrow. I'm not sure how they determine if it is still in her lungs or not at this point, possibly it might show up in a blood test but I haven't had the chance yet to speak with the doctors. The shingles that are visible on her skin have crusted over, which means they are not active which is a good sign. I guess we will just have to wait and see what the doctors want to do about chemo tomorrow. Hopefully she will be able to continue with it.

Sleepy Day

Today was nice and quiet for a change. Erika slept on and off most of the day, which is good for her but she is so behind on her sleep that I don't know if she will ever catch up. There is always something going on in the hospital which makes sleeping difficult.

A new Attending started today which I'm happy about, although I haven't met him yet, Erika said he was much better than the last one. My Mom and Shawn are staying over with Erika tonight so I can try to catch back up on my sleep. I am hoping to get 12 hours, which should give me a boost for the coming week.

I wanted to thank everyone for your comments that you have been writing. Erika and I read them each day and I can't tell you how good it makes us feel to know that we have a lot of love and support from our friends and family through these tough times.

Conflicting Information

Last night Erika did not sleep that well. I think she got a total of two hours sleep. I think her breathing was bothering her and making it so she couldn't rest. This morning she was still a little more short of breath than the previous days since the hydration. The Oncologists that were on duty said that the right side of her lung is filling up with some more fluid again, which is the side that no longer has the chest tube. However her Thorasic doctor that came in the afternoon told us the complete opposite, that her lung was not filled with fluid and she wasn't sure why she was having the shortness of breath. Two different doctors, with contradictory information, who are we to believe? To say the least it was a frustrating day today.

No plan yet to remove the chest tube on the left side. To me it looked like it was still putting out quit a bit of fluid to remove it, but the Thorasic team will assess the output in the morning and make a decision.

Erika was in and out of sleep most of the day, since she hadn't gotten much sleep last night they gave her Benedryl to try and make her rest. I suggested a sleeping pill but the nurses like to reserve the sleeping pills only for the night. And besides Erika is reluctant to take any kind of sleeping pill as she is afraid of having a hallucination. Hopefully she can get a good night sleep tonight on her own.

Two very special visitors came to see Erika today. Francesca and Pebbles somehow snuck their way into Erika's hospital room for a brief visit, which made her really happy. I'm hopping this weekend will be uneventful and I am crossing my fingers that this set of doctors go off rotation as both Erika and I detest the current Attending's lack of good bedside manners.

Horrible Hydration

Last night the doctors had ordered one liter of hydration for Erika because they thought she was dehydrated. We ended up noticing in the middle of the night that it was running and even though we objected, we didn't really make a fuss. In the morning Erika noticed that her breathing was a little worse from the day before and her chest felt tight. I also could tell that she was a little bit poofier in her hands. Worst of all the drainage from the chest tube had increased from the day before and not decreased as had been the trend. As a result the chest tube did not get pulled today. I think all this was attributed by the extra hydration.

Thoracic came today and re-did the stitch that closed the opening from the right side chest tube which seemed to stop it from leaking. I guess the plan for tomorrow is to wait and see the output from the remaining chest tube to determine if it can be removed.

Overall it was a pretty low key day as Erika tried to catch back up on her rest and we watched part of two movies, Anne of Green Gables and Wedding Crashers.

A Very Long Week

I wanted to let everyone know what has been going on with Erika since her last blog post. Here is a short rewind of what has happened over the last week.

The doctors have been stumped for a while about what has been going on with Erika and the issues with her lungs and the excess amount of mucus, which has been affecting her breathing. They have been telling us all along that it was a fungal infection and have been giving her every combination of antibiotics for bacterial, viral, and fungal infections that are available, but Erika had not been improving.

It was decided that a lung biopsy was necessary to get a more precise answer as to what was gong on. Monday the 15th, Erika had a combination of procedures done to minimize her having to go back to the OR multiple times. Her Hickman was placed; a bronchoscope to remove more mucus from her lungs was performed; a piece of tissue was removed to get a better sample; and two chest tubes were placed on either side of her lungs to drain the excess fluid, which was accumulating between her chest wall and lungs. All the procedures were successful and went better than expected. As a precaution however, Erika was once again taken to the ICU where she spent next two nights. I was able to see Erika that first night, although she doesn't remember my visit. The next day she looked much better than the last time she was in the ICU.

Erika came out of ICU on the 17th and we were back in our old room, which was nice since we didn't have to move everything and we were still in a single room. Later that evening we ended up getting transferred to an isolation room on the same floor because a skin biopsy done two days before determined that Erika came down with a case of shingles.

Later that night Erika had a lot of pain from the two chest tubes and was on some pretty heavy pain medication. There were nurses in and out of our room all night long and people looked really worried. I guess the pain medication was too much for her and it slowed her breathing down to dangerous levels. They ended up giving her some medication that removed the pain medication from her system so her breathing would come back to normal.

Thursday morning I was awoken by Erika's oncologist, Dr. Jacobs. She told us that they had the results from the lung biopsy and that things did not look good. The lung biopsy showed that what was in her lungs was most likely entirely disease and that it had looked more aggressive than before. Both of us were stunned and confused because all along the doctors had been telling us it was fungal and not disease. Dr. Jacobs said that Erika did not have that much time left, maybe days at the most. She wanted to know what we wanted to do. Erika was in a lot of pain at that moment and told her doctor that she just wanted to be comfortable and not try anything else to stop her disease. Family and friends were called and all loves ones surrounded her stunned. Honestly I was so stunned that I don't really remember that day.

Later on that night out of nowhere Erika awoke from her sleep and changed her mind. She decided that she wanted to fight, like the fighter she is and always has been. We spoke with Dr. Jacobs in the morning and made the preparations to start a weekly chemo called Taxol. We were told that the chances of Taxol working were 5-10%, but nevertheless, Erika will hope for miracle and that she's one of those 5-10% that will respond. There was a slight problem however; the attending oncologist on duty was unwilling to give Erika the chemo while her shingles were still active. She said until the lesions were crusted over and no new ones were visible, chemo would be out of the question.

Finally after four days of waiting, Erika started Taxol on Monday. Erika has been making small improvements every day. She still continues to have daily pain from the chest tubes, which is being managed with pain medication. The right side chest tube was removed on Monday and they are talking about removing the left side chest tube possibly tomorrow, which should relieve some pain.

I want to let everyone know that both Erika and I appreciate everyone's love and support. I have been passing on your best wishes from emails and cards that everyone has been sending. I know a lot of you have been wanting to come and visit, but right now the best thing is for Erika to get her strength back and get some much needed rest. The hospital is a busy place which is not the ideal environment for people to rest. Erika has multiple teams working on her case, from Oncology, Pulmonary, Thoracic, BMT, the nurses and their assistants, Physical Therapy and Respiratory Therapy. It seems like someone is always in the room doing something with Erika and adding a lot of visitors on top of everything else just does more harm at this point.

I have been staying with Erika all of the time, except to do some needed errands and to take a shower. Erika's dad, aunt from Mexico, and sister have been staying with her during the day and my Mom and I have been taking shifts staying up through the night. The puppies have been at home and are being looked after by Erika's dad.

The long term goal is to get Erika out of the hospital and home when she is ready. We are making progress towards that goal each day, but they are baby steps. The plan for chemo is to get Taxol weekly followed closely with chest x-rays to see if any progress is being made.

I or Erika when she is up to it, will update the blog daily. I know she is a much better writer than I am and more descriptive, but I will do my best. I want to thank everyone again for all your love and support.

My Own Room!

I’m finally in my own room, yupee! The nurse in charge came by around 8pm tonight to say they had a single room for me and I would be moving in a few minutes. After much help getting everything moved, I’m now in a much better situation. Chris has already set up his cot for staying the night. Right away I can tell I’m going to be sleeping much better knowing he will be here.

Believe it or not, I still don’t have a new Hickman. It turns out that the patient advocate did some research and the surgeon that I requested is out on a conference until Monday. He will be back Monday and will be doing some procedures, but they aren’t sure they can get me on that day’s schedule. I’ve been told it would happen Tuesday by the latest. The oncology team is upset with me making the decision to wait until this surgeon is back, but I honestly don’t trust anyone else considering what has happened before. His resident even told us that she looked back at the notes of my last Hickman insertion and said she’s very concerned that they might not be able to get one in since they had such a hard time before. She even mentioned other options, such as having it inserted in my neck, groin, or having a pick-line; all of which I disagreed to. She’s also trying to convince me to get a port instead of a Hickman, which again I’m not very fond of.

Once the Hickman is in they plan to start me back on IV antibiotics/anti-fungals right away. The oral medications I’m on now impact my platelets, which is what’s keeping me from getting chemo. I’m also kind of looking forward to receiving all the necessary drugs IV, since the oral ones are making me throw up and feel really sick to my stomach.

I wanted to thank everyone for their ongoing support. I've received numerous emails, e-cards, and comments on my blog that are very inspiring. Please know that if it takes me a little while to get back to you, it's because of the overwhelming amount of e-mail I've been receiving.

No Hickman Yet

The last two days have been beyond frustrating. I was originally told I would have my Hickman inserted on Monday, than Tuesday, than today, and now it’s tentatively scheduled for tomorrow. All these days I’ve had to go without food and water after midnight until mid-afternoon the next day when they end up telling me the procedure won’t be happening. Today they probably would have gotten me in, but not with the surgeon that I had requested. I put my foot down this time and told them I did not want anyone else inserting my Hickman, especially due to the complications I’ve had in the past. We’re not sure where the breakage in communication is, but I’m now working with one of the Stanford patient advocates to try and get this resolved. Not having my Hickman is holding back both anti-fungal treatments as well as chemo.

The nights continue to be difficult. I rarely get more than 2 hours of sleep and therefore I’m exhausted and not happy in the mornings. Still no word on getting my own room, although my roommate will be leaving tomorrow morning.

I still haven’t received the results of my bone marrow biopsy. I was supposed to know something on Tuesday and still haven’t heard a word. As you can tell I’m getting very frustrated with the lagging of test results and lack of communication by the doctors.

Three Long Weeks

Just as I expected, the bone marrow biopsy was a horrific experience. The resident that did it was very nice, but I think I’m just exceptionally hard to get bone marrow out of. I was even given two small doses of morphine right before and it didn’t do a thing, except make me sick to my stomach later that day. The oncology team was going to go get the results yesterday, so I may receive some answers today during rounds.

The CT that I had done that same morning appears to be worse. The chest x-ray that I had done showed improvement in the mucus amount after having the last bronchoscope, but now it appears that things are back to being plugged again. They still don’t believe it’s progressive disease, however they will probably need to do a lung biopsy to confirm. The pulmonary team is contemplating whether to do one. Meanwhile, they will be trying some additional respiratory treatments that are used on patients with cystic fibrosis to see if it will help. Nobody really knows what to do at this point since they haven’t really seen anything like this before.

Regardless of everything going on with my lungs, my doctor is ready to start chemo. I will be on a weekly regimen of Taxol starting probably tomorrow. They want me to get my new Hickman first for the infusion. I’m scheduled to have that inserted later today. Just when I’m getting over the soreness of getting the old one out, now I’m going to be sore again from the new one. I can’t complain though, anything is better than more IV’s. I had another one put in just a few hours ago, since my other one stopped working.

Tomorrow will be exactly 3 weeks since I was admitted. It’s unbelievable to think that I’ve been here this long and away from my own bed. I can’t think of a 24-hour period where I’ve gotten more than 4 hours of sleep. My body is so drained/exhausted/weak. Walking is becoming such an effort, not just from a breathing perspective, but from my legs/knees being so weak.

No word yet on getting my own room. Fortunately my roommate is not too bad, she just tends to talk A LOT, which exhausts me.

Bone Marrow Biopsy

This morning I had my CT scan done around 11am. It was scheduled for 9am, but they were running 2 hours behind due to it being the weekend. Even with my IV I managed to get poked again this morning for a blood draw. Fortunately they were able to use the IV for the contrast though.

I got to see my BMT doctor again as well as the regular team of oncologists. My platelets are back down again so they were a little disappointed. This still continues to be a concern if I need to start back on chemo again. Because of this I was told I would need to have a bone marrow biopsy done, which is my biggest fear of all. I haven’t had one since my 2nd BMT and never expected to have one again. I guess they want to rule out any problems with my bone marrow and make sure there’s no disease there. They will be doing the procedure within the next hour. This will truly be one of my worst days ever; I can just anticipate it already. As if I don’t already have enough other things going on making me feel awful.

No word yet on whether I will still have a lung biopsy done or when I will have another Hickman inserted. They thought I might get moved to a single room today, but it’s not looking so promising anymore.

A Very Rough Night

Yesterday I had my Hickman catheter removed as planned. I was taken away to the OR around 2pm and brought back to my room around 5pm. The whole experience was quite traumatic. I didn’t feel any pain or remember anything, but it was very difficult for me to part with something that has been a part of me for so long. I even asked the surgeon to save my Hickman, which he did. I have it in a little cup by my bedside as a reminder of how much use I was able to get out of it. To think that I took such good care of it and fought so hard to keep it for so long is quite difficult.

I was told that after it was removed, I would be receiving all my medications orally so that I wouldn’t need an IV until a new Hickman was inserted. Well, when I got back from the OR they had started an IV on my hand and they proceeded to tell me they were going to be using it and didn’t want to remove it. I was furious and it actually stopped functioning in the middle of the night. This morning I talked to the team of doctors about not having it in and they said I had to have some sort of IV in case of an emergency. This afternoon the one on my hand was removed and a trauma nurse inserted a new one by my elbow. It’s not being used, it’s only for emergencies and blood draws.

Due to all the trauma from yesterday, I had one of the hardest nights to date. Because I’m still in a double room, Chris is not able to stay the entire night and finally left around 2:30am. I didn’t sleep the whole night and was a complete mess. I wasn’t even able to remove my oxygen at all or get out of bed except to use the restroom (with assistance). This afternoon I gradually started to feel a little better. I had a really good respiratory therapist do my treatment, which helped a lot. I was also able to take a shower and even get up to walk around the unit once (with the oxygen tank trailing behind).

I was just told a few minutes ago that I will be having a CT scan done tomorrow morning. I’m not sure why, I was not informed as to the reason. I hope something bad didn’t show up on my last chest x-ray that I wasn’t informed about.

My platelets also finally went up today (120), which my doctors were all happy about. I’m sure part of it has to do with a platelet transfusion I got yesterday before my procedure, but regardless they’re a little more relieved. The plan if all goes well is to possibly start chemo on Monday or Tuesday.

This morning I got a great surprise…a visit from my BMT doctor! He happens to be on duty this weekend and since I’m in the BMT unit he came by to see me. He told me I looked great considering everything I’ve gone through (I think he was just being extra nice) and said to hang in there because he’s working on getting his new trial FDA approved and I’m first on his list to try it out. It would involve using my donor’s frozen cells and he’s very optimistic that I could benefit from it.

Goodbye Hickman

After two years of fighting to keep in my Hickman it looks as though it will finally be taken out tomorrow. The infectious disease doctors as well as my oncologist agree that it's time. I couldn't really say "no" anymore due to the risk that it could be potentially causing all the problems that they haven't been able to resolve. I've had three positive cultures in a row and even though they're giving me antibiotics to keep the possible infection under control, it's only temporary and can easily return once they take me off. Dr. Spain, the surgeon that put both of my Hickman's in initially and who I met with a few months ago regarding removing it, will be doing the procedure. It will be a few days before they will be able to put in a new one. Meanwhile, we have worked out a deal that I will be taking all medication orally so that I don't have to have a peripheral IV put in. I think after seeing how bad my wrists are from the last time they attempted an IV they're willing to compromise. It will be very difficult to part with my Hickman as I've had it for 2 1/2 years and it's very much a part of me.

I have also been getting quite a bit of lasix today to try and get some of the fluids out. I've managed to have a lot out of output, but my body is still very much out of proportion. The right side is especially swollen, which they believe might have something to do with the Hickman. They also think that my heart complications could be related since the Hickman is going straight into one of the main ventricles.

An ophthalmologist did see me today and she said my eyes were okay. She dilated them and looked both outside and inside. She recommended that I go see my optometrist to get new glasses since the ones I have are pretty old. Guess I'll have to be blind as a bat until I get out of here and can go see him.

Nothing yet on when I might have the lung biopsy. I think we're taking one step at a time and hopefully I'll know more in regards to that tomorrow. So far no results have come back yet from the last bronchoscope (not a surprise).

No luck on finding me a single room either, so it will be another sleepless night without Chris.

ICU

I finally had my bronchoscope done on Tuesday around 4:30 pm. I talked to the thoracic surgeon right before the procedure and he said the goal was to take as much of the white stuff out as possible and get a good sample to send to get tested. He said the procedure would take approximately 30 minutes.

Two hours into the procedure they finally stopped as they felt that they had gotten as much they could. I was told they got out about 85% of the mucus that was blocking four of my airways. They were not able to get a tissue sample as hoped. Because of the amount of inflammation to my lungs from the procedure and the amount of fluids they had to give me, they sent me to the ICU. Chris was not able to see me until around 11pm and they only allowed visitors (immediate family memebers) every 2 hours for 30 minutes maximum, which was very difficult. They left my breathing tube in (since I was not able to breathe on my own), inserted a catheter into my bladder (which is by far the worst thing I’ve ever had done) and put an IV into an artery on my wrist, which was also awful. They tried four times on my left wrist and six on my right before being successful. Chris took a picture of my wrists after the IV was removed and you can see it below. I was finally transferred from the ICU to E-1 last night around 11pm. Of course due to full capacity of all the units I was put into a double room with a roommate. Chris was not allowed to spend the night and therefore I didn’t get even half an hour of sleep. The good thing is that I’m on the top of the list to get single room either here or in another unit. Because I most likely won’t be in this room very long, I’m not going to bother to give out the room number and phone number as it causes great confusion for the nursing staff as well as the new person that comes into this room.

Since they weren’t able to get a tissue sample from the bronchoscope, now they’re talking about doing a lung biopsy. In addition, they did an echo of my heart and chest x-ray yesterday. The chest x-ray looked worse once again, although it could be attributed to all the inflammation and washing they had to do of my lungs. The echo showed some minor-moderate fluid around my heart and also a slowing rate of pumping of my heart. They’re going to be talking to a cardiologist to see if it’s something that my need further attention. I’ve managed to gain more water weight and I am now 18 lbs heavier than my normal weight. They are giving me low amounts of lasix, but it’s not working at the rate I would like to. Another problem is my vision. Everything seems to be blurry and they’re calling in an ophthalmologist to take a look at my eyes. This all seemed to have happened since I was admitted to the ICU.

In the meantime, my oncologist is very weary about what to do about chemo. She just doesn’t feel safe moving forward not knowing what could potentially be causing all these problems in my lungs. The thoracic surgeon mentioned that it did not look like tumor to him, but of course nothing has come back saying it is or isn’t. Three of my blood cultures from my Hickman have now come back positive and the talk of removing it is now high priority. They are seriously considering removing it within the next few days and eventually replacing it after the infection has cleared. I of course could not be more disappointed since I can’t tolerate any sort of IV and I don’t want to go through two more surgeries.

I have absolutely no appetite and need to force myself to eat. Even chocolate is not appealing to me anymore. I think I’m just growing more frustrated by the day with them not knowing anything, especially as we’re starting to approach over two weeks that I’ve been here and I’m not able to breathe very well without oxygen. Taking a walk outside my room is no longer an option. I’m lucky if I can make it to the restroom or sink.