November 29, 2011 – Maybe a good weekend coming up, holding my breath...

Margaret had her blood work done and the numbers has improved.  The doctor says that after her chemo on Friday and her Neulasta shot on Saturday to help her white blood count recover from the chemo then she can go home!

Her white blood count went to 4.1, her neutrophils were at 2.47 and her LDH went from 376 to 246 (122-222 is normal, getting closer).  Her last antibiotic 'shot' was on Monday so her veins can rest a little while.  They are also reducing her chemo to 50% of what she had last time since it really did a number on her blood counts.  Hopefully the reduced chemo will be a little kinder on her, on the other hand a little while after the last chemo her stomach pains went away and haven't returned so maybe it was worth it to get rid of the pain.

They bring in the raptors this week so we will have to see the effect (or is it affect?  Never kept that one straight) it will have on the crows.  Some day when I have more time I will look at the picture I took of them at dusk and if it turned out I will post it.  It really made me feel like Tippi Hedren (boy am I old) when they were flying around.  I did remember to not look up, a good thing to remember in those situations.

Thanks all the good news I have for now!

Thanks.

November 26, 2011 – Beat up veins

Margaret is still getting IV antibiotics and they use an IV line.  They are allowed to keep the line in for 3 days but the best we have had so far is 2 ½ days.  The antibiotic is thick and tends to hurt if it is in a small vein.  Her veins are so beat up they are running out of places to put them.  Hopefully her blood work will be good on Monday so they can stop the IVs and give her veins a rest for a while.

It has been a little on the quite side, there are people who live close who were allowed to go home for a day or two for Thanksgiving and people being released before Thanksgiving.  We are expecting a big group of people on Sunday night because the house will be filled on Monday.

The crows are still noisy at dusk and dawn, it’s always fun until someone releases the raptors!  That should happen sometime this week and maybe the population will be significantly reduced.  Then maybe we don’t have to walk through all the ‘white stuff’ (and I don’t mean snow) and maybe our cars can be some other color other than white.  They did get me the other day and it felt like someone threw a big heavy walnut at my back.  It was a glancing blow but still needed significant time to get it off my coat.

Thanks.

November 24, 2011 – Happy Thanksgiving and those darn crows

I hope everyone had a happy Thanksgiving.  I know at the Transplant House there was LOTS of food and everything I tried was good, there was way to much to try it all.  We are still making our treks to the clinic for Margaret’s 7:00 AM and 7:00 PM IVs of antibiotics and her veins are getting pretty beat up.  They put an IV line in and it has to changed every 3 days but she has never made it past two.  They do not leave the whole IV in all the time just then end (needle and end cap, technically it is not a needle) so they can they use this line, just the end, to put the antibiotics in so she doesn’t have to be stuck twice a day.  Unfortunately they can not use this line to draw blood.  Because of the chemo her hair is thinning daily, she has already started wearing head covers.

Now about the crows, there seems to be thousand of crows in Rochester.  At dawn and dusk the air is filled with thousands of them.  It is wise not to walk under trees or look up around here.  I went through a car wash and a day later my car had many ‘hits’ on it.  It is ridiculous.  Mayo is concerned and has hired a company to bring in ‘"attack birds," including peregrine falcons and hawks’, to scare off the crows’ to try to get rid of them.  I guess if the crows are smart they will fly away or they may be dinner.  I look forward to the success of these raptors.  The crows are also very loud and at dark if you were to shoot a shotgun in the aid you would probably get a dozen or more.  Something tells me that the Rochester police would want to know why you discharged a weapon within city limits though.

Hope you had a good Thanksgiving!

November 21, 2011 – They kicked her out!

Today she was kicked out from St. Mary's.  Well ok that is a little harsh, she was discharged.  Her blood counts are still in the toilet but they still let her go.  We have to go to the clinic in the morning and at night to get an IV of an antibiotic until her blood counts improve.  Her current white blood count is .5 so it did go up from .3 and she now has measurable neutrophils of .07 and she gets the shots until it hits 500 so she may be getting the IVs for a while.

It is good to have her out of the hospital.

They are talking about switching her from tacro to sirolimus now since her body could not build a defense for anything let alone reject an organ.  They normally take their time switching but they are thinking of doing it quickly since it should have no effect on rejection given her current state.  Also a benefit of sirolimus is that it works a little better against proliferative diseases like her lymphoma.

Thanks.

November 20, 2011 – Things are improving.

Well Margaret is making progress, her white blood count (WBC) went up to .3.  It sounds like they may discharge her tomorrow.  She will probably still need to go to the clinic twice a day for antibiotic infusions (IV).  She ate 3 full meals today which she hasn’t done in a long time.  She also was awake for the majority of the day, no naps for her.  She is progressing slowly but in the right direction.

Thanks for checking in!

November 19, 2011 – Things are improving.?.

Margaret had blood work today and her white blood cell count doubled from yesterday.  The number of white blood cells she has is now.2, that has doubled from yesterday but still very, very low.  She is on IV antibiotics to help prevent any new infections and one her numbers climb or early next week I think they will let her out.  They have stopped one of her anti-rejections meds, cellcept.  The purpose of cellcept is to lower your white blood count, well the chemo is doing just a fine job of that already and if they stop the cellcept maybe her blood count will not plummet into the toilet so far.  They are working to get the stomach cramps under control and they are going to try a new approach.  The long term solution is to get the lymphoma out of the digestive tract but they are looking for a shorter term solution.  That is really her main issue currently and has been causing her a lot of pain.

Also since the weather has changed a bit here.  It snowed and the grass and sidewalks have snow on them, not much but some.  It is supposed to 23 tonight s I think I may have to think about putting the liner in my nylon jacket.

That’s all I know for now, thanks.

November 18, 2011 - Apparently she wanted a room upgrade

This morning we went for some blood work and while we were there we thought we would stop by and ask about the return of her mouth sores.  Her oncologist was out of town so we saw the physician’s assistant who basically said that she looked like hell.  Since this is Friday she thought it was best that she be hospitalized.  As it turns out it was very much the right decision, her white blood cell count was .1 (that is point 1), the normal is 4 to 11 (it is measured in thousands) so she had 100 white blood cells in whatever unit of measure they use.  Her count was a little off, like by 4 thousand since she only had 100.  Her neutrophils (type of white blood cell that helps protect against and fight infection) are at such a low number they are uncountable.  They were also a little concerned that her blood pressure was dropping at night and she was running a low grade fever.

After she was admitted and had some drugs she was more awake than she has been in the past 3 days.  She also ate dinner, the whole dinner, in contrast yesterday she had 3 pieces of pizza (small squares of pizza) for lunch and three more for dinner and it took her an hour to an hour and a half to eat those three pieces at each meal.  Tonight was just a normal size dinner and she ate it in a normal amount of time.  Since she has been admitted she is doing much, much better.

She will probably stay in the hospital until her counts come back up.  The combination of the chemo and the immunosuppression has really done a number on her blood counts.  They are considering stopping some of her immunosuppression drugs until her numbers come back up.  They are not concerned with rejection since she hasn’t had any yet and her numbers are so low that the chance of rejection is not a concern.  To keep her even more safe she is in a transplant ward where cleanliness is a much bigger concern, this way there is less of a chance of her getting sick in the hospital.

Thanks for stopping by.

November 16, 2011 - And then the steroids wore off...

Margaret had been doing pretty well but she was on some serious amounts of steroids (180 mg of prednisone) and that made her feel much better.  Now that the steroids have worn off she is not feeling real great.  The good news is that her latest blood work is still showing more improvement in her liver enzymes!  Her AST went from 29 to 23 (normal is 8 – 43 so it is normal), her ALKPhos went from 162 to 109 (41- 108 is normal, almost there!) and her LDH went from 376 to 246 (122-222 is normal, getting closer).  The first two are signs of how well her liver is working and the third (LDH) is a marker for the lymphoma.  They will do a repeat of her PET scan after 2 or 3 cycles of chemo. 

Her blood counts are also lower, her white blood cell count is lower and WBC and her neutrophils are also lower. What the heck are neutrophils you ask, someone was not paying attention in biology class.  Honestly, apparently I wasn’t either but they are talked about a lot here especially with stem cell transplants.  Neutrophils are a specific type of white blood cell that helps protect against and fight infection.  There, are you happy you asked?  These drops in the blood count are expected and a good sign since they are caused by the chemo. 

Except for the being tired and feeling like crap (and yes, apparently crap is a medical term since the docs all know what it means) she is doing ok.  I specifically asked if they had any idea when the pain, cramps and intestinal issues would go away and the answer was no, so we got that going for us, which is not nice (slight misquote intentional).

There does seem to be a lot of amyloidosis patients here which is unusual.  Most are here for stem cell transplants (bone marrow).  Our experience has been that there may be one other person here with amyloidosis but now there are five or six.  One couple is here from LA and they think it is really cold.  The couple from Israel also thinks it is very cold.….. silly people, it is in the 30’s it will get a lot colder than this. 

At some point they will let us come home and just return for the chemo treatments which should be  just a few days every three weeks.  This sounds like a lot of return trips but at least we will be home most of the time.

Thanks for stopping by and reading my prose.

November 11, 2011 - Some good news and some not great news

First let me say that I was going to post this last night but the internet was down at the transplant house.  Earlier this week Margaret had a PET scan looking for how much cancer was still in her body.  We met with the doctor on Thursday and got the results.  The results are that she has ‘significantly less cancer than there was before but we have a significant way to go’.  Originally her liver was about half lymphoma and that is down a significant amount but he was hoping that there would have been much more already gone so on Thursday he added real chemo to the mix.  She still has some in her bowel but some of the digestive tract issues are a bit better. Having been on chemo before we did not think this was great news.  The Rituximab had no side effects that we could tell since it was just going after the specific cells and not all cells there were no chemo side effects.  Now with chemo in the treatment plan that will likely change.

Thursday was her first round of chemo and every three weeks she will have another treatment of chemo for a total of six rounds and to save you from doing the math that is 18 weeks or four and a half months (yes, I did that all in my head, didn’t even need to write a program for that).  This will hopefully get rid of the cancer quicker and is the ‘normal’ treatment but he was trying to hold off of the chemo part because of possible (small chance) of cardiac side effects with the new heart and all.

For those of you who have experience or knowledge with all of this stuff she is on 180 mg of prednisone for day 5 days starting on the chemo day and then for four more days for a total of five days.  The chemo is called Chop or R-Chop which is a mixture of the prednisone, vincristine, doxorubicin and cytoxan.  The prednisone is pill form and the rest is all IV.  And let us not forget that she will still be getting the Rituximab which is IV. If all goes well after the first round she may be able to come home between rounds but they are HIGHLY recommending that we return for each chemo day and probably an extra day or two for tests (PET, echocardiogram, blood work, etc). It also may take two rounds for her to be able to go home, we will have to wait and see.  They are also pretty much promising that she will lose her hair so Margaret guesses we can save on trips to the beauty salon for a while.  One other side effect of the doxorubicin is that it turns her pee red. Very cool, but I have not had a chance to witness it yet (yes I am weird).

Mayo has a ‘losing hair from chemo’ store and we visited and got a few head covers.  In time we may get a wig as they have them also, I suggested a redhead, brunette and blonde one…….Ooo la la!

Her blood work does continue to improve which is very good.  Her Alk Phosphatase started at 268 and is down to 162 (normal is 41 – 108).  Her AST started at 77 and is now 29 (normal is 8 – 43) ** Normal Level!! Her LDH, lymphoma marker started at 606 and is now 376 (normal is 122 – 222).  As you can see the numbers are coming down and one of them is in the normal range, this is very good.

 
Today she had a Neulasta shot to help her white blood count recover from the chemo.  She is awake and out of the room more and even walked to the neulasta shot today once we got to the clinic by shuttle, this is great since she has been in a wheelchair while at the clinic since we got here.  She also walked with me so I could get my flu shot (great just what I wanted a needle. I don’t like needles).  She is still a little pokey on the walking speed but she is still walking, gotta love the steroids!

Thank you for checking in!

November 8, 2011 - Some visitors and not much else....

Not a lot has been going on recently. Margaret is still sleeping and resting a lot. She was down stairs (out of the room) for about 4 hours yesterday which was a major change, most of the time she spends resting/sleeping in the room. Tomorrow she is having blood tests and her second PET scan to hopefully show that the lymphoma is getting smaller. She gets her next treatment on Thursday which should hopefully be the 4 1/2 hour treatment since it will be her third.

Our kids came up this past weekend, it is always great to see them.  Amy and Matt stayed at a hotel down the road and we had a good visit.  I know it is a long drive to do Saturday and then back on Sunday and Margaret and I both greatly appreciate it!

Last Friday Kendon and has family stopped by, they were in town for a checkup. Kendon is the young boy who had a transplant the same day as Margaret. He is doing great and it was good to see him, his brother and his parents.

Yesterday I went with a couple from Israel (the wife had a liver transplant) to visit the convent near here and no I did not bursst into flames when I walked in.   Today the couple from Israel and I may go visit the chapel at St. Mary’s.  It is really interesting talking to them. 

This was longer than I thought it was going to be.  I hope to have more info in the next few days.

Thanks again.

November 4, 2011 - Welcomed News

More good news!  She had blood work yesterday and her blood work is still getting better!  In fact her AST level is now normal (39, 40 is normal), just barely but still normal.  Her AlkPhos is still high (206) and we did not get an updated LDH level.  She also had the second treatment of Rituximab and she had some drugs before to handle side effects and it went well, just 4 1/2 hours which is a lot better than the first treatment which had a few side effects and took about 9 hours!

The plan for next week to repeat blood tests and have another treatment.  She will also plan for another PET scan next week to see how much the cancer is being reduced and from where and meetings with transplant.  The doc had a few interesting lines yesterday.  The first was 'You are doing better than I thought you were going to'  and the second was 'You were blowing up in front of our eyes', needless to say we are pleased that she is responding to the drugs! There is also no question but that oncology is driving the bus now and transplant works around the appointments the oncology doc is scheduling.

So far things are going pretty well since she is getting better with the drugs, they are trying hard to keep real chemo out of the picture since chemo also damages the heart.  She is also on codeine for the pain she has been having which is having a good effect on the digestive issues she was having so that's  a win-win!

Thanks for stopping by.

November 1, 2011 - Welcomed News

Well we got some good news!  Her liver enzymes got better and her LDH (lymphoma marker) was lower!!  This was just with one treatment but then again it is there are only 4 with this drug (Rituximab).  The doctor says this is obviously a good sign but no promises on the eventual outcome but he is guardedly optimistic.  The next treatment is this Thursday so hopefully there will be a continued lowering of her numbers, we will know next week when she has more blood work.  She also got some meds for the pain she has been having and it seems to be working which is wonderful.  Overall I think things are going better, numbers down, pain level down.  Now if we can get some of the lesions out of her colon and help the digestive track a little that would be wonderful, but that will be in the future.

Thanks for stopping by!