Surprises

We have been back home now a week and we have had a couple surprises…

The typical debilitating nausea that appears after each chemo cycle did NOT occur! Karen had some slight nausea but all in all we have been able to address it with just Ativan. A nice change to the earlier cycles when nausea was such a big issue. The other surprise has been some nasty mouth sores. They are very painful and are taking awhile to heal and there is no quick fix/treatment to help address them. The only thing that can be done really is wait them out and run their cycle. The only positive, if you would call this positive, is that she can still eat/drink bland items (i.e. yogurt) whereas if she had the nausea she really couldn’t eat anything. Even though the doctors/nurses told us that mouth sores can be ‘typical’ during treatment they are new for us since this is the 1st time she really developed them. We are hoping that they do not reoccur to the same degree with future rounds. As of now the cycle seems to have peaked as of yesterday and today was actually a very good day for Karen.

Our next round of Chemo will be done up here in Portsmouth next week. Given we are staying with the same regiment and are doing nothing new treatment wise we decided to save the travel time and have the treatment done locally.

As for myself, Karen and I decided that since we have settled somewhat into our new home / life that it was time for me to start back up with work. So earlier this week I went into the office for the 1st time since Karen was diagnosed. It was good to see folks and have the chance to start thanking personally for all the support that they have sent our way.

thanks again

-michael

Back at home

We are back.

We were able to get back early this afternoon from BW. Chemo treatment wrapped up late last night and we were able to get discharged by noon. So far so good in terms of nausea being under control. Between the cocktail of Emend, Aloxi, Zydis and Ativan there is some decent control to the nausea ‘ups and downs’.

Our next chemo round will be done back in Portsmouth since the regiment will be staying the same. As for checking back in with Dana-Farber we will be heading down in a month for a progress review.

Overall Karen is getting stronger and eating better but it is taking time. In fact she is staying up with me to watch the Yankee/Sox game tonight!

-michael

Back in the hospital II

On Monday we had an appointment with Dr. Tom Abrams down at Dana-Farber and due to a combination of events and timing we ended up being admitted for some additional tests and the next round of Chemo. This was somewhat of a difficult decision since Chemo treatment in the hospital is only in-house, i.e. they do not send you home with a pump. So as a result we will have to be here until the end of the week once the 3 day treatment is done.

As for the tests they wanted to confirm that there were no additional blood clots in her leg and review her abdomen for fluid. As for blood clots there were none, just soreness due to her walking around more. They were able to drain 850cc of fluid from her abdomen. This draining is roughly 3 weeks from the last one. Unsure at this point what this means outside of that there must be some tumors that are still active. Hopefully the next round of Chemo starting today will squash those remaining tumors.

Condition wise it is has been a slow road. Pain is still manageable but the nausea and nutrition intake is still a challenge. She has been slowly eating more and completing the “digestive cycle” but the nausea when it hits makes her feel like crap and as a result she minimizes her activity. This maybe a case of just having to use more anti-nausea medicine. Something to review with the doctors while we are down here.

thanks again for all your support

-michael

Home…

We made it home last night.

After roughly 7 weeks in the hospital Karen is back with us under one roof! Leaving BW was somewhat uneventful, we said our goodbyes to the staff or I should really say friends. All of the folks there were great during our stay and we will stay in touch as we continue this journey.

Some pictures with the girls enjoying breakfast w/ mom.

..and with neighborhood friends

As for the upcoming next round of Chemo we will be heading back down to Boston and will be treated at Dana Farber’s outpatient service. As with the 1st round that we did back in Portsmouth this will be done during a single day and then a pump will be attached to deliver the Chemo over the next 3 days. We plan on having Dana Farber handle at least the next round or two given the obstacles we have had to overcome earlier but our goal is to be treated locally for future chemo rounds and continue to have Dr. Tom Abrams at Dana Farber be the lead.

As for the CT scan that was done earlier in the week, Dr. Abrams confirmed that the cancer is stable. When compared to the 1st CT scan there has been no new growth and no fluid build-up from tumor cells growing. Quoting Dr. Abrams he is “pleased” with the progress so far and as for those tumors that were creating the fluid build up they could be classified as being ‘dormant’ now or at least growing at a rate that is not measurable. So the treatment makeup, 5FU w/ Avastin will be continued with the next few rounds with the goal for the tumors to start shrinking.

As an aside there is a new genetic test that Mass General Hospital (MGH) has just rolled out that will confirm the effectiveness of additional treatment options, erbitux, etc.. We are anxious to have Karen’s tissue sample examined since this will eliminate the usual ‘trail and error’ approach that in the past has been tried with cancer treatments

Over the next few days we are becoming acclimated to the new house and working with the local pharmacy in corralling all the drugs that will be needed – roughly two dozen..! We are expecting a visit from the local visiting nurse later today to review Karen’s needs, etc.. They will be needed for the foreseeable future until her overall strength improves.

thanks again for all your support and well wishes

-michael

Move and Update

We are still down at BW. We decided to have our CT scan done down here on Tuesday before we were released. The results are still pending but hopefully we will know more later today. In short these results will confirm for us how well the cancer is responding to the Chemo. Karen had a slight fever this am so as a precaution they are keeping us until tomorrow it looks like, we were planning on coming home today. Being home will be a big adjustment for us given the amount of time she has been in the hospital. She is on one hand excited and on another anxious to be away from the nurses and in her ‘new’ home. It’ll be an adjustment for all of us.

Here are some photos from the move. Thanks Cindy for taking these photos!

As mentioned earlier between the turnout and some excellent preparation the move was smooth and quick. In fact, I had hired some ‘professional movers’ to move the furniture but we ended up canceling them since we had just about everything moved by EOD Friday.

Moved!

We did it. Over the past 48 hours we ended up moving from Dover to Durham. We had a great turnout to help with the undertaking. Cheers to all those that helped and a special thanks to Heather, Trisha & Betsy for helping with the coordination and keeping me sane over the past two days.

As mentioned in the earlier post this was something that we determined early on as something that would be beneficial for not only Karen but really the whole family. There are a number of reasons from the layout of the house  (1st floor bedroom), community and for the girls to be now within walking distance to their best friends, school, etc.. Hopefully all of these items will help us with the upcoming challenges that we are going to be dealing with in the future.

As for Karen she is hoping to be back home this upcoming week. I will be going back down on Monday and hopefully coming back home with Karen mid-week. We are eager to have her back at home and be with her family and friends.

thanks again to everyone

-michael

Round 4

So far so good with this round of chemo. There has been very little nausea and Karen actually had a few bites of an egg, cheese and bacon sandwich on Tues..!

The real test with the nausea will be later in the week, day 5~6 (Sat/Sun) after the chemo starts. In anticipation of this an additional anti-nausea drug (Aloxi) was added to the current regiment of Emend, what she usually receives during treatment. Aloxi is similar in nature to the Zofran that she has been taking but supposedly lasts longer per dose, multiple days vs. 1/2 day. Crossing our fingers that this combo will do the trick.

Now for something completely different…..we are moving. As some of you may or may not know early on in Karen’s diagnosis we decided that it would best if we moved to a location that was in a neighborhood and be located closer to our close friends (girls and ours). So tomorrow we will be closing on a house in Durham and then moving over the next couple of days.  More on this once we have keys in hand.

Thanks again for all your continued support, prayers and good will.

It means a lot to not only Karen and I but our family.

-michael

Getting ready….

Round four of Chemo will start this upcoming tues.. We are anxiously awaiting the start of this session since we are also planning on coming home shortly thereafter.

Karen is continuing to log on the laps. The past two days she has walked roughly 1 mile each day. As you would expect her muscles are sore and aching having been laid up in bed for so long. Her pain still seems to be under control and we have started using the oral version of Dilaudid vs. the PCA.  Eating is still a challenge and will be for the near future. Considering her stomach has had very little to almost nothing in her system for the past two months there is a lot of re-learning that needs to take place.

We had a visit from the girls today and they decked out Karen with some new bling…

1/4 a mile

What a difference a day makes…

On Tuesday the nausea passed as if on queue with the chemo dissipating from her body. With the nausea passing her need for anti-nausea drugs has decreased to a minimal amount and she is back to her ‘old’ self.  In fact she ended up walking a 1/4 a mile when she woke up and had a few items to eat. Very encouraging considering the previous few days.

We had our team meeting with her doctors and in short they are optimistic that the chemo is working good. The hour long meeting really allowed for everyone to ask questions and Dr. Abrams to outline and highlight the items that makes him believe that the chemo treatment is beating this cancer. Of course he cautioned that the CT scan will be the definitive answer as to the extent of success but all signs so far indicate good progress. He also mentioned that we are still very early in the treatment and that we should see additional improvements over time. Overall this was a positive meeting that helped frame the future and some next steps in getting home.

Given the the holiday coming up and the next round of Chemo starting next week we will end up staying here until after the 4th round has been administered. So from now until then we will be working on a plan to get home.

-michael