This past weekend was mild, with many family visitors that Cyn really enjoyed... even if she did get a bit tuckered out.  Our niece visited from Vegas.  Since she lived with Cyn and Joe for awhile, it was nice to have her back in town even for just a short visit.

The nausea stayed away for the weekend, for the most part.  I returned to San Jose on Monday night, the heat wave was not so bad in the house since the air conditioning kept it comfortable for everyone.  Cyn complained of body aches, so we gave her a bit of liquid tylenol through the g-tube (the doctor had said that would be okay if we ever needed it).  It didn't help, and in fact about an hour later I found her at the toilet throwing up a little.  These days mostly she heaves or brings up some of the water she's been trying to take.  Needless to say we are all perplexed about why the nausea is coming back, even if it is just a little bit.  Just after 1am she sat up and got nauseous again, dry heaves but that was it.  It was then I decided she should have the last Emend dosage.  The last dosage I gave her was Thursday before I left and it seemed to last pretty well through the weekend.  This dosage seems to be lasting pretty much too, although every once in awhile she has the urge, nothing happens.

We had an appointment with Dr. Chen on Tuesday.  He is of course still concerned and perplexed by the nausea but says if the Emend worked then it should be used.  However we can only get it when she is going through chemo, so we will likely start with the Haloperidol and Dethamexasone if  the nausea really gets going.  Cyn also has various cyst type bumps on different parts of her body, most are just under the skin and about the size of gumballs.  They started appearing about week 4 thru six of chemo.  The doctor says he has not seen that happen before and is concerned that it is also the cancer manifesting itself.  He has scheduled another CT scan for Monday, and we will meet with him again on Friday the 8th.   Cyn will likely start another round of chemo after that Friday meeting, as Dr. Chen will take a look at the scans to see where we are and then decide on a new cocktail of drugs for the chemo based on what he finds.  He wants to do it sooner rather than later, but also wants to give her some time to rest and build more blood cells.

Are we nervous and scared?  hell yes.  But we are also trying to stay neutral as well as positive with Cyn about what the outcome will be.  We are also rather matter of fact in talking about what she'd like to do, what she wants, what she expects.  She doesn't say much because I think she is in shock as well. We'll be meeting with the Cancer Support Community folks tomorrow night.  They are a resource for cancer patients and families, and will help us all get the information and services we might be needing in the near future.

We are all in for a big fight against this thing, and I personally don't plan to lose. 

Your collective positive energies, visualizations and prayers cannot do anything but help Cyn in her fight so please continue them daily as part of your regular life rituals. 

A rest period...

Today was Cyndy's last radiation treatment.  They actually gave her a "certificate of achievement" to celebrate the end of her radiation session.  We also got another shot from Dr. Chen's office, this is to help boost the white blood cells.  Dr. Colburn (radiology oncologist) suggested asking Dr. Chen if she should get another blood transfusion next week when we see him.  Since the blood cell count has dropped and she is now anemic, he thought it might be a good idea.  He also told her she would probably be very tired for another week or two before her body started getting stronger, so not to worry if she is slow to get her energy back.

Last evening she developed a bit of a cough again (it comes on at night mostly), which we brought up to Dr. Colburn today.  He listened to her lungs and said they were clear, so this was something in her throat which could be caused by the radiation/chemo.  Cyn told him that she's had the trouble swallowing normal amounts since she lost her voice, which was after the exploratory surgery done in the throat area by the thoracic surgeon she saw.

We all (family) think that the paralyzed vocal chord (the cause of her whispery voice) and the swallowing problems were due to some thing that might happened during the exploratory surgery.  Dr's Chen and Colburn are not so sure about that because the cancer cells are also in the same area, they think it has something to do with the cancer.  In the meantime, they said to wait and see what happens as she rests up, builds blood cells, and gets stronger.

Cyn has been receiving all of your cards and emails.  Please do know that she reads them and cherishes them... she just doesn't have the energy to answer.  She knows that you are all reading up on her journey via this blog (I've told her we've had over 1,000 hits already).

She enjoys the photos you send too, your emails give her something to look forward to every day.

No Chemo today...

We headed over to see Dr. Chen today. He decided that since Cyn's blood counts had dropped a little, and this was the last week of radiation- that there would be no chemotherapy treatment today. Instead she is getting some shots to help her generate more white and red blood cells, as well as some potassium (her electrolytes were low), and fluids to keep her hydrated.

We decided to keep her on the Emend meds this week since we had it, and again only start the new meds if the nausea got bad again. She had just about a week of little to no nausea this week which was a good sign, but the emend really he says the insurance company won't pay for (it aint cheap!) unless she's actually having the chemo.

So... we'll see next Tuesday if he decides on chemo. In the meantime we're trying to find the magic combination of efforts to get rid of the nausea once and for all. If she has no chemo today that will be a big help this week, I think.

Enjoyable weekend

Timing with chemo nausea medicine this weekend helped Cyndy to keep the nausea at bay for most of the weekend. We took the doctor's advice in stretching out the medicine "Emend" and give it every other day, or at least wait until she really needed it. We gave her the Emend on Tuesday as usual (the first chemo day), then gave the 2nd pill of three late on Wednesday. This held her nausea away until Saturday around noon where she started to throw up again, so we gave her the last Emend pill and it has held through today. She got some heaves this evening around 6pm but no major problems.

Tomorrow is her 6th session of chemotherapy, and since it is first day of chemo, we will again give her an Emend pill. I'm hoping that we can have have the same good results again this week and ease into a rest week next week.

Week Five

I jinxed Joe when I said the 4 days of calm... Sunday night through to early Tuesday morning Cyn had a horrible time with nausea. Poor Joe was up every hour because she was throwing up every hour. The feeding tube also clogged up on Sunday so by Monday after radiation they were back at the hospital getting the feeding tube (its called a "J" tube) replaced yet again, but this time a larger diameter tube. Since then we have been flushing it with water regularly and it has remained clear.

Tuesday was chemo day and our appointment with Dr. Chen. He is still very concerned that the nausea has not let up. The only pattern we could find to the whole getting sick thing was that it usually starts the 5th day after chemo. Usually she's sick starting Saturday night, last week it started on Sunday night--- and chemo was a day later that week because of Labor Day.

We of course asked Dr. Chen if there was anything stronger he could prescribe and he spent the morning on Tuesday getting referrals to meds that would help the nausea. You see we are not sure if the nausea is just the chemo, since before chemo started Cyn already had problems keeping anything (solid or liquid) down. She would try all kinds of different textures and tastes and nothing would stay in her stomach. This is why she has the feeding tube. Now, we are not sure why the nausea has not gone away. She has not had anything to eat via her mouth in over a month. Even the doctors are perplexed.

Anyhow, we did get a couple of new meds that are stronger... but Dr. Chen warned that they would make her much more drowsy. One is a narcotic and the other is a steroid. We asked if we could wait to start using them until she really had another bad bout of nausea and he agreed.

So, Tuesday chemo day was uneventful. Wednesday was uneventful. Thursday the Radiation Oncologist let us know that she has 1 week of radiation to go this session and they are now doing a "boost" which is a more intense dose of radiation in hopes that it will shrink the cancer cells. Next Tuesday will also be the last day of chemo for this session. After that she will have a week or two of rest. Dr Colburn (the radiation dr) also took a scope to look at Cyns vocal chords to see why she does not have a voice. He confirmed what he thought, that the vocal chord is essentially "paralyzed" because of the cancer . He said not to worry too much about it and that it was common in people with lung cancer and if her voice didn't come back after treatment then he would recommend seeing a specialist (ears, nose and throat doctor) to take care of it. Neither he nor Dr. Chen think we should worry just yet. I'm not so sure.

I spent time with Cyn trying to get her to exercise her legs. Since she is so tired all of the time she spends most of her time sleeping. Last night I made her do three leg lifts while laying on her back. She did 2 sets of 3 reps on each leg then also moved each leg out to the side and back three times, and she was exhausted when we were done. What's most difficult is to see her this way, always sleeping or wanting to lie down. I also made her some chicken broth today, and she took a few sips with no problems. Its almost as if she doesn't want to make the effort to take anything by mouth since she knows the feeding tube is taking care of that..... this from someone who I considered a foodie! We are going to start making her take more than just ice chips in when we can. Clear broths are our next step, I only hope she keeps trying.

We will find out next Tuesday how long her "rest" is, and when they will be reviewing and determining next steps.

Four Days calm...

I got a call from my mother today. She spent time with Cyn and Eloise (my eldest sis) at Cyn's house today and she said that Eloise and Cyn went on a walk for one block today! And so far it is 4 days with no throwing up- yay! I think that those visualizations really are helping so thank you and keep 'em coming. Tomorrow and Monday will be the true test timing-wise so please keep her in your thoughts all day!

Week 4

Its been a rather long week but I'll try to keep it brief.
Last weekend was another trying weekend with Cyn being sick and throwing up pretty much all weekend, which if you remember was a 3 day weekend. By Tuesday afternoon, she was at Dr. Chen's office getting fluids replaced intravenously as she was dehydrated from the weekend. We couldn't figure out if it was just the chemo doing its thing, or the nausea that she had before we even started treatment. The drugs were just not keeping the nausea at bay for as long has they had been earlier last week. Ugh.

Needless to say, she was ready as she could be for her 4th chemo treatment on Wednesday. Normally at the chemo lab the lounge chairs she sleeps in are no problem, but recently she started having sciatica pain (lower back and in the piriformis area-- aka deep in the right cheek) so she had a horrible time getting comfortable throughout the session (we're talking 4 hours). She needed to stand up and stretch and we worked hard to try and massage out the pain. Finally the nurses got the ok from Dr. Chen to give her a small dose of pain meds so that she would just sleep. It put her out pronto. From there it was on to radiation. It was an exhausting long day but no nausea .

Thank you for your "clear feeding tube" thoughts.... they are working, keep em coming. We've been diligent about flushing the tube with water to keep it clear and running smoothly too but I really think the visualization energy is working in there somewhere. And while you're at it, can you start visualizing her with no nausea?? I think if she could actually say it out to all of you directly she'd say she really hates the nausea and the throwing up the most. She sheds tears every time she gets sick so I know this is what pains her the most.

In addition we had a few more challenges this week. Joe figured out that there was something not so good (aka dead animal) in the basement and the smell was starting to creep up into the house at night. So after a search, he did find a possum that was alive and took off when it saw him but was unable to find the source of the not so good scent. Then later in the week we determined that whatever was down there had a nasty infestation of fleas, which were also eventually making there way up into the house... while deciding we could flea bomb the house today and stay at Joe's sister's house for the afternoon (which is what we did); we also noticed that the drain for the washing machine was starting to back up and would spill water on the floor. Joe dealt with that this week too. Bad things in threes... I think we're done with house problems.

Luckily I was the only one who the fleas loved. No one else got bites, just me-- you can connect the dots of bites on my ankles and feet and it would look like some constellation... but I digress... and now I'm going to catch up on some much needed sleep.

Long week....

How can it already be Thursday??

Last weekend was a bit challenging for us all. Cyndy's feeding tube became clogged on Saturday, so we had to feed and do meds through the same port- the gastric port. While she is getting food, it appeared that she may have been getting too much food too fast, and as a result she spent the weekend throwing up a lot and not feeling so good.

On Monday, it was radiation therapy as usual and blood tests. Then Joe and Cyn made a trip over to Good Sam (different hospital than where she gets radiation), where they had an appointment to get the tube unclogged. When they arrived the department was running behind because of a couple of emergencies they had to make priority. As a result even with an appointment at 2:30, they did not get seen (and the tube completely replaced) until close to 5:30 and finally home at 6:30 which meant we were behind in medication by a couple of hours. This is the nausea medicine which means that as soon she got home she was throwing up again. After administering the meds things got a little bit back to "normal".

Tuesday was chemo therapy day. Before chemo we met with the doctor who checked her out, and said that her red blood cells had dropped a little. Because he thought she also looked very pale, he scheduled a blood transfusion for Wednesday. Chemo on Tuesday took about 5 hours, then right after chemo, its the usual visit for radiation. After radiation at O'Connor, we had to go by the lab for something called "type and cross", basically they get her blood so that they have type and details in order to order the plasma bags. Doing it the day before the scheduled transfusion saves time on the day of transfusion (about an hour, they say).

Wednesday was a regular radiation appontment, then a visit with the radiation oncologist. Joe asked about Cyns voice and what might be going on there. The Dr. described the nerves for the vocal chords and how they work (pretty good description, by the way) and said he could use a scope and go in to see if his thoughts on what might be happening were correct. Since the transfusion was scheduled right after we were seeing the doctor, Cyn opted out of scoping the same day and asked if he would do it next time we saw him. One procedure a day was enough for her stress level, I agreed an so did Joe.

From there we headed over to the Outpatient Infusion Center, where they were expecting her. The transfusion took about 5 hours (another long day), and they got home around 7pm last night. She was tired from the long day, and went right to bed.

Pretty calm night last night. Although she does cough throughout the night and has to wake me up to stop the food flow to her tube in order to go to the bathroom, it seemed this morning she was a bit stronger and her color was good. She is ambulatory and can go to the bathroom herself, washes up and gets ready for all of her appointments on her own, of course I have to always remind her to slow down as she gets moving quickly and then sometimes gets bit lightheaded. Other than that, we are on a good path today!

Thanks all for your positive visualizations and good healing thoughts... please add "clear food J tube" to you visualizations too! Can't go through another one of those episodes, ugh!!