Dec. 15th - Happy 1st Birthday to me!

One year ago today was my transplant day. In some ways it seems longer than a year and in other ways the time has flown by. I'll be back to work on a full-time basis next week already. Thanks to everyone for their support over the past many months including all the rides to appointments, all the great food, my patient "baby sitters" when I first got out of hospital, the visitors who kept me company and all you who cheered me on in your emails and in your hearts. And of course a big thank you to my "big" sister for the great stem cells!
My one year check up at the transplant clinic is on Monday and I've had various other tests over the past weeks, like bone density and lung function, to make sure all my parts are functioning well. I'll update the blog again next week after my appointment. Now, it's time to celebrate!

Oct. 24th Checkup

Another great report from my checkup this morning with my transplant doctor. My sister is here visiting so came with me and got to meet Dr. Shafey for the first time. Dr. Shafey asked her how she thought her cells she gave me were doing to which she replied 'great', and Dr. Shafey agreed of course! My 'bad' protein level is down to 4 and anything below 3 is considered normal (because it's too low to measure), so I am almost there. I'll have a bone marrow biopsy at my next appointment in December so hopefully I'll be under the 4 mark by then. The December appointment will be my one year anniversary; hard to believe. I've been feeling stronger and walking further, up to 4 kms when the weather's nice. This is my last week of "leisure" as I'm starting back to work part-time next week, three half days to start. I expect I'll be sleeping when I get home those afternoons but I'm looking forward to getting back. Thanks again for all the prayers and good thoughts from everyone. I'll make one last post after my December appt which should be around the 19th. Bye for now!

Had my checkup at the clinic this morning. My white blood count and my hemoglobin have finally edged into normal ranges. My platelets are still in normal range too. No wonder I'm starting to feel so good! Had my first hair cut this past week; the curls are still there. My eyebrows and eyelashes grew in a light reddish-brown in June but are gradually getting darker. My energy level is getting better, I'm up to a 1.9 km walk each day. Still get little dots of rash but that could continue for months as the last, hopefully, of the old cancer cells get smushed by my new blood cells. My progress is as expected by my transplant doctor. Hard to believe that it's been 9 months since my transplant, and other times it seems longer. Thanks again to everyone for all the good thoughts and prayers and vibes. I couldn't have come this far with out you!

July 18 Checkup

Another great report from my checkup today with my transplant doctor. In her words I'm "perfect", meaning my progress is right on target for this point in my recovery. My hemoglobin is 113 which is just barely below normal range of 120 to 160, platelets are 169 which is within normal range of 150-400, white cells are 3.7 (normal range is 4.0 to 11.0) and neutrophils are 1.9 with normal range being 2.0 to 9.0. They measure a bunch of other things but those are the important ones. And my hair is better than many people as you can tell from my latest photo! It's also wavy which is new for me. I haven't cut it yet, just had Irena trim it around my ears and neck a bit. I hate to cut it after waiting for it to grow back. I continue taking only my anti-viral med which is only one pill per day. Other than that it's a matter of eating well and exercising to get my strength up and to help my new cells continue to finish off the last of the old cancer cells.
So the results were a great birthday present as today is my birthday! I had a wonderful time celebrating with friends up at Pine Lake for the weekend. The weather was beautiful and we had lots of good food and fun. Can't believe my shoulder is sore after playing ring toss and bean bags. Better start a little weight training for the upper body! My next checkup isn't until September because I am doing so well. Have a great summer!

June 6

Another good report from my transplant doctor this morning. I'm doing well enough that she's extended the time until my next appointment to 6 weeks from the 4 week schedule I was on before. She prescribed a mouth rinse to help with my dry mouth. It's a steroid base that is usually given as an enema for internal gastro problems, so I try not to think about that as I swish it around inside my mouth! The clinic pharmacist recommended I fill the prescription at the hospital pharmacy because my regular chain store pharmacy would be very confused by the prescription. The dry mouth and the off/on again rash are good signs though that my new cells are fighting the last old cancer cells, so it's all good. Still dealing with the neuropathy, numbness and tingling in my lower legs and feet, when I walk any distance but hoping that will get better with time. And my eyebrows pretty much all fell out which is also a symptom of Graft vs Host disease; but they are starting to grow in a little bit again. June already, almost 6 months since my transplant!

May 26

Had a checkup with the hospital dentist. He's fitting me with fluoride trays because my dry mouth is pretty severe, which can cause cavities. Once I have my trays I can fluoride my teeth daily to help prevent any cavities. Not sure how long the dry mouth will last. Other than that things are good. Just hoping for an end to the rain and some sunny warm weather!

May 9

Time for a new picture to show off the fuzzy hairdo. Everything is going well, my rash is gradually subsiding and it's going to be +20C Wednesday so looking forward to that! My next scheduled checkup at the clinic is June 6 so looking forward to another good report then.

May 2

A great report from the doctor at today's appointment. My white blood count is 4.0, which is back into normal range. Neutrofils are 1.8 so still a little low but improving. Haemoglobin is 110 which is almost in normal range (minimum 120). Had a recurrence of a rash which is a sign of Graft vs Host disease but it's ok to still have some of that going on. So my new cells are doing a great job. Best of all it's +17C outside, maybe spring is finally here!

April 18 doctor's appt

Followup appointment with my transplant doctor this am. CT scan was good, no more swollen lymph nodes nor cancer cells in my hip or back. My blood counts are still a little below normal but had improved slightly from the last visit. It's a slow recovery for them now. I have an opthamologist appt tomorrow to check my eyes for damage from the chemo, but haven't had any problems so expect a good checkup there. Trying to get out for walks between snowstorms. Hopefully we saw the last major storm last weekend and spring will really come for Easter!

April 11

Not too much to report. I'm feeling better each day, maybe partly because of the warm, sunny weather we've had the past week. I get out for a walk around the block most days so am getting my fresh air. My incision from the removal of my central line is healing well; nurse Irena did a good job removing the stitches last week. I still have some neuropathy in my legs and feet (nerve damage from the chemo drugs) but that should diminish with time. My energy is getting better so I don't nap as long in the afternoons. All in all things seem to be progressing as expected. My next doctor's appointment is Monday April 18 so I'll see if she agrees with my assessment!  

Day 100+

I thought Day 100+ would be a little anti-climactic after receiving my good news on Monday. But the elves or gremlins were busy very early this morning on my front yard, planting hearts and flags. Many thanks to the anonymous ones behind all this. I'm sure my neighbours are wondering, especially about the sign announcing the "100th Milestone". I'll have to set them straight that it's not a birthday milestone!
For our eastern friends, yes it is still snowing here, but the sun is coming tomorrow. Hopefully real spring weather isn't far behind!

Day 96+ - good news

Finally talked to my doctor about the results from my latest biopsy. It showed really good results from the transplant. The Waldenstrom cancer cells are down to only 10% of the cells in my marrow. They were at 50% before my transplant. I think last year before I first started chemo they were 70%. So quite a reduction. Also my marrow is over 98% donor cells so the transplant took really well. That also means those cells will keep working and hopefully reduce the cancer cells to 0%. Also my cells are still 'hypocellular' which means they are still recovering from the chemo which is good because they will still get healthier over the next few months as they continue to recover from the chemo drugs. That's why my blood counts are still below normal but they'll continue to improve over the next few months. So I am right where they want me in my recovery process which is great news. Thanks again for all your good thoughts and prayers - they worked!

Day 93 & still waiting

Still waiting for my doctor's call with my biopsy results. She only works in the clinic on Mondays so I suspect I won't hear anything 'til then now. I've been getting out for a walk around the block with the nice weather we've had this week. Nice to feel the sunshine again. Hope everyone has a nice weekend.

Day +89 - Still waiting for biopsy results

Hello everyone!

I know that some of you have been eagerly awaiting the results of Lynn's bone marrow biopsy but unfortunately the Doctor didn't have them yet.  She will call Lynn as soon as she has them back from the lab and one of us will be sure to post an update then.  We did find out though, that it is possible that there will still be some of the Waldenstrom's cells in the marrow as Lynn's body is still working through the transplant and getting all of the healthy cells developed.  Dr. Shafey reassured us that this would be very normal and not to be concerned.  Some time down the road (in another 3-6 months) they'll likely do one more biopsy to make sure all the cells are 'normal'.

Lynn gained more weight and is up to 55.6 Kg (about 122 pounds for the non-metric folks).  Her blood counts are still below normal but holding steady.  Again, the Doctor said this could stay this way for a few more months as the body rebuilds its cells and then they'll start on the upward path towards more normal levels.  All is good :)

Some of the best news for Lynn today was that the Cyclosporin was discontinued - that was cause for a high-5!!  This is the medicine that takes away from Lynn's appetite and is a bit smelly and oily - really not nice to take a couple of times a day.  Because she doesn't have to take this medication, another one was discontinued (it was 3 times a day), so Lynn is down to two medicines, each just once a day.  Hooray!  These will still go on for several months, but it is definitely manageable.

Over the next few weeks, Lynn will be doing some further testing, scans, etc. to see how her body has managed through the transplant.  Same tests as pre-transplant and just to make sure everything is okay. 

That's it for today.  Thanks again to everyone for the great wishes, thoughts and prayers along the way. 

With love,

Irena

Day +83 - Biopsy Day

Good evening, everyone

It has been some time since I had an opportunity to post the update but since Lynn's a bit sore from today's biopsy, I thought I'd take a try.
Lots of blood tests today - no results yet as we weren't there long enough.  Everything is going well though, based on the previous week's results.
Lynn's weight is holding steady and she's eating quite well these days.  She took full advantage of Mardi Gras (fat Tuesday) as we had pancakes and bacon for supper tonight.  We can both see that her strength and stamina are slowly getting better. 
The bone marrow biopsy went well.  It's a bit of an uncomfortable procedure (to say the least) but Lynn was a great patient (both the Doctor and nurse said so, too).  It will be a bit sore for a few days, but otherwise she should be fine.  We'll get the results on Monday (14th) morning.  The doctor already scheduled an appointment for Lynn to get her central line removed - this will be done on the 22nd so that is also good news.
The nurse also did a test to check the moisture level in Lynn's eyes (I can't remember what the test is called) and again, she passed with flying colours.  The nurse explained that sometimes post-transplant a patient will end up with dry eyes and will need drops, especially in the dry air of Calgary - but Lynn is okay.
So, all in all, another good report from the clinic and now we sit tight for the results on Monday. 
Have a great night!
Irena

Day +82

A new picture, thanks to Janice and Terry for my new 'Flair Hair'. I'll be able to wear this on the golf course this summer so I don't get a sunburn! Still a little too chilly out here to wear it outdoors yet. Big day at the clinic tomorrow - bone marrow biopsy day. Not a fun procedure but I'm anxious to see the results, which I should get next week. Have a great week!

Day 76

Another good report from the doctor yesterday. Reduced my cyclosporin dosage again so my appetite continues to improve. Next Tues. I will have the dreaded bone marrow biopsy to see what's going on in my marrow. That will show how well my new cells are doing so I'm looking forward to the results. Glad I can stay inside where it's cozy today in this -30 weather. Spring can't come soon enough!

Day +71

Had my doctor's appt yesterday as Monday was Family Day holiday. Another good report so she reduced my cyclosporin dosage again which always helps the appetite. Somehow I lost weight which was surprising considering the sweets and chocolate I have been consuming but I guess I need a few more protein shakes to bulk up. As long as no symptoms of Graft vs Host disease flare up she'll continue to reduce my cyclosporin dosage each week so hopefully I'll be off it by March 21. That means no more Ursodiol either which is a pill I take 3 times a day to protect my liver from the cyclosporin. I look forward to being done with both of those meds. Other than that, it's freezing here, -30s with the windchill today which makes me glad I don't have to go out. And my Flames are still in the playoff hunt!

Day +62

Another good checkup yesterday at the clinic. My cyclosporin dosage was reduced a bit which is good as it affects my appetite and the taste of food. I still have some symptoms of Graft vs Host disease but as long as they continue to decrease, the doctor will  reduce my cyclosporin dosage. My rash is gone, which was one of the symptoms, hopefully it stays away. I still get tired fast so lots of afternoon naps and resting. Looking forward to going to the theatre this weekend now that I'm allowed to go out in public.  

Day +55

Another good report from the doctor yesterday. My white blood counts and neutrofils continue to do well so I got the ok to go out in public. Also I no longer need to take a magnesium supplement so two less pills to swallow each day. The skin around my central line is getting raw from changing the bandage weekly so I may lose it soon. It's nice not to get poked every week to give blood samples but I won't miss having a tube sticking out of my chest. Provided my level of Graft vs Host disease doesn't get any worse they should be able to start reducing the amount of cyclosporin I take each day. That will be great as the cyclosporin affects my appetite and the taste of food, so the less I have to take the better it is for eating. I managed to gain a kilo last week; must have been the chocolate dipped caramel corn I consumed during the Super Bowl! Overall I'm feeling pretty good. Now if the temperature would just warm up and the ice would melt!

Day +50

Thought it was about time to change the picture. This picture is my brother and I modelling the fun yarn hats that Stefka gave me. These hats are great for indoor wear as they are looser weave than a toque but still keep my head warm. Thanks Stefka!

Day +48

Another good report from the doctor yesterday. My white blood cells and especially by neutrophils continue to improve which is good as they are the disease fighting cells. I had some IV fluids as still struggling to drink as much as they want me to but not a big deal. Best news, the doctor reduced my dose of cyclosporin, which is a ghastly tasting medicine, and should be able to start reducing it even more after the next two weeks. That will help my appetite immensely so I'm looking forward to that.
In case you wonder why I head these blogs with "Day +#", it's a count up to Day +100 from transplant day. At that point the doctor will do a bone marrow biopsy to determine how well the transplant worked. It's the big milestone date. It might not be exactly 100 days but it'll be around then depending on how things go. So I'm almost half way there.
Feeling much better this week than last so hopefully that continues. It's supposed to warm up to +8C by Thursday so I'll be able to get outside for a walk and get rid of the cabin fever.
Next appointment is next Monday so I'll report again after that. Hard to believe it's February already.

Day +45 - A bit of an update & thank you's

Good morning!

We woke up to temperatures of -15 degrees and a bunch of snow today.  Based on the forecast, it'll be a good weekend to stay in and maybe watch a couple of movies that Lynn would like to see (trying to catch up on some of the flicks before the Oscars).
It's been a busy couple of weeks around our household.  Kim was with us until last Sunday and had an adventure in trying to get back home.  They cancelled the only flight to Kitchener and she ended up having to wait for a while before flying in to Toronto.  Thanks again to both Pat and Kim for all of the help, cooking and support while they were here.
This week saw a variety of Lynn-sitters.  Reina on Monday, Gail on Tuesday and Thursday and Barb on Friday.  Lynn was in good hands, and so was I as there was always something on the go for supper when I got home each day.  Thank you ladies!
As for Lynnie, she's had a tough few days here.  Some tummy troubles, headaches and just not feeling well.  This has meant lots of sleep and just doing what she can for fluids and some food in her belly.  The good news was on Wednesday she managed to secure a family doctor - a nice lady who works in a clinic close to our house.  The transplant team said it was important for her to do that, and like in many parts of the country, it's not easy to find a good doctor, or one at all.  Her sister-in-law Nancy took her to that appointment - thank you.
As Lynn said in her last post, she'll get another update out after we see the doctor on Monday. 
Have a great weekend everybody!
Love,
Irena

Day +41

Another good report from the doctor yesterday. My blood counts are good. The rash is under control with the cortisone cream the doctor prescribed. I was able to reduce the amount of magnesium I take as my counts are near normal, which means fewer pills to take which is always a good thing. My appetite is a little better so hopefully it continues to improve so I can gain some more weight. The weather is beautiful, +9C today. Unfortunately it's icy on the sidewalks so too treacherous for much walking around the neighbourhood. But I'll take the warm weather and ice over freezing cold any day. Hope you easterners aren't still freezing. The rest of the week should be quiet as not too much planned. Next doctor's appt is next Monday so I'll update after that. Have a great week!

Day +35

Long day at the hospital yesterday. mostly sitting around waiting. But good report from the doctor as all my levels are doing well, still just a little low in the Magnesium. I've developed a rash on my back which is good as it signals a little bit of Graft vs Host disease. That is good as it indicates the new stem cells are taking and fighting whatever old white blood cells or even cancer cells were left. So my progress seems to be following along with what is to be expected at this stage of recovery.
And the weather is warming up. Expecting +2 to 4C the rest of this week. So no excuses for not venturing out for a walk, according to my doctor.
Eating is still a chore as most healthy foods don't taste great and I have no appetite. But it's lunch time so I'd better go find something to eat.

Day +32 - Shift change

The weather continues to be cold here in Calgary so Lynn is doing her best to stay warm and cozy.  Lots of rest today as we had some friends over for dinner last night - lots of endorphins flowing from all of the laughter (after all, it is the best medicine). 
Pat flew home today after spending the week with us.  A big thank you to her for 'Lynn-sitting' and getting her around to her appointments, etc. this week.  Kim arrived on Friday and has been acclimatizing to the Alberta weather.  Looking forward to her company this week. 
Otherwise, Lynn is doing well and we'll get another update on Tuesday from the doctor.
Have a good night!
Irena

Day +30

A good day to stay inside by the fireplace. It's snowing and about -30C with the windchill. Had a top up of fluids yesterday at the clinic so not feeling too bad today. Some of the meds make food and drink all taste really salty so it's difficult to eat and drink as much as I should. However the cranberry custard danish I had yesterday tasted pretty good. Maybe sweet food is the key, to offset the salty taste. The trip to Cdn Tire was fun and people hardly stared at me with my mask on. And with the cold weather my toque covers my bald head. Nothing too exciting planned for the weekend. My next doctor's appt is Tues. so I'll report further after that.

Day +28

Nothing new to report; no news is good news. Must venture out to Cdn Tire today to get a battery for my thermometer. Shouldn't be too many people there on a Wed a.m., so few germs with which to contend. And the store is close to home so not far for a trial run with Pat driving the car. Pat very graciously volunteered to spend a week as my 'lynn-sitter'. Better go bundle up as it's -17C plus the wind chill!

Day +26

Met with the transplant doc in the Clinic today. All my counts are good and everything is progressing well. I was a little low on fluids so I had a litre intravenously but other than that they are pleased with my progress. Hopefully my appetite will continue to improve so I can put on weight and get stronger, and have some more natural insulation to combat the freezing cold out here! Luckily I have some great long underwear! Don't see the doc again 'til Tues. Jan. 18 which is good although I'll have to brave the weather this Thursday to attend the clinic for more IV fluids. I can't seem to drink enough. Maybe if I could drink wine it would be easier!

Day +25 - Sleepy Day

Things are quiet on the home front today.  Lynn has been doing some reading and lots of napping.  She's quite tired today and just seems to need some rest.  Given the snowy, cold conditions continue today, there's not much else to do anyway.
Our friend Pat is flying in from Ontario tonight and will be helping us out all week.  Probably more news to come from Lynn after she sees the transplant doctor tomorrow.
Stay warm and safe out there.
Irena

Day +23

Doing well on my third day of freedom from hospital. Food still tastes funny but at least I can try more things than in hospital to try to find something that tastes palatable. Mucositis seems to almost be gone with just a couple of mouth sores still hanging around. Hopefully they're all gone soon with my white blood cells recovering. Snowy, blustery day here so a good day to stay inside in front of the fireplace. I'm still pretty weak so not much help to Irena in the snow shovelling; hopefully it all blows away! Have a great Saturday!
Lynn

Discharged! - Day +22

Yahoo!  It was a long day at the hospital but Lynn was officially discharged from inpatient care today.  She's very happy to say the least.  The blood tests showed that all of her levels are strong (some are even better than mine :) and because she's doing so well at drinking lots of fluids and eating, they won't need to see her as often.  Yeaaahhhh!!  This also means that she's on fewer medications which makes her even happier as she was having a tough time with all of the pills.  It's now more manageable and shouldn't cause her as much trouble. 
Next appointment to see her transplant doctor will be on Monday and depending how things go, should be a weekly appointment with maybe the odd blood test in between as long as she continues to feel well and respond so positively to the transplant.
Joanne O. was a great help in getting Lynn to the hospital in the morning and staying with her until I could get there from work.  We have reinforcements coming from Fergus, ON.  Pat is coming this Sunday for a week and Kim is coming next Friday for a full week to stay with Lynn and drive her to appointments as needed.  After that, we're hoping that Lynn will be strong enough to be on her own, at least for parts of the day.
Everyone can cheer in the progress that Lynn has made.  There have been so many people helping her out along the way and in so many different ways.  It's taking a village of family, friends and colleagues to get through this and it's working - so thank you!
Good night!
Irena

Day +21

Hi all. Enjoyed a whole day at home today. Yahoo! Thanks to my 'lynn-sitter', Joanne O., as I still can't stay home alone in case an infection bubbles up quickly. It was sooooooooooooooo nice to be in my own house rather than the hospital. Feeling pretty good although still very little appetite. I'm looking forward to when food will have a good taste again. Until then I try to eat little bits at a time to keep my weight up and make sure I keep getting stronger. My throat is still sore so still waiting for the morning when I can enjoy a piece of toast with pb & jam! Funny the things you crave.
Thanks again for all the good thoughts sent my way. They are obviously working. And thanks for the posts. Irena told them to me but I enjoyed reading them all again.
Almost time for the big hockey game. Go Canada Go!
Lynn

Day +20 - More progress

Lynn spent most of the day at the hospital today.  The daily round of blood tests, seeing the doctor and then today it was getting organized for an extended leave.  She's now on pass until Thursday at which time she's goes for more blood test (you wonder how she has any left some days) and then a meeting with one of the transplant doctors to see if they will actually discharge her from the hospital and transfer her care to the transplant clinic on an outpatient basis.
If that happens, then there'll be regular trips for blood tests and weekly meetings with the transplant doctor to see how things are progressing.  Lynn still can't be left alone right now so we're just working on getting things set up so she can be safely and comfortably at home and get rides to the hospital when she needs them. 
Otherwise, she's doing pretty good.  Just trying to get some normal sleeping patterns back in place and still working on getting all the pills down that she needs to take- some of them are kind of yucky so it takes some effort on her part.  She's quite happy though, to be home for a couple of days and hopefully longer.  You may even hear from her tomorrow on the blog.
Have a good evening!
Irena

Day +19 - Home at last

After yesterday's troubles, the nurses and doctor were able to get Lynn's tummy troubles settled down and she had a good night.  Since she's able to take her meds orally the doctor agreed to letting her go on an over night pass.  Lynn could hardly wait to get out of there.
We've been home most of the afternoon.  She's enjoying resting in the Lazy-Boy and has the fireplace on to keep her cozy and warm.  Gail, Pauline and Maureen came over for a visit.
Other than that, it's going to be a quiet evening at home - a welcome rest for both of us.
We'll keep you posted with tomorrow's progress.
Good night!
Irena

Day +18

It's been a quiet day around here as Lynn had a difficult night.  Little sleep and lots of tummy troubles.  This means back on contact isolation (nurses/doctors wear gowns and gloves).  They're not sure if it's some sort of intestinal infection or simply a reaction to the antibiotics.  It's crazy when the drugs that are meant to help you also make you sick.  We'll know more in the morning, but in the meantime they're helping Lynn to get it back under control.
Because of this, they're delaying going to oral meds until tomorrow.  Lynn managed to drink most of a smoothy for lunch, and we'll see how she does with supper.  Otherwise, she's just trying to rest.
I'll post again if anything new comes up.
Irena

Happy New Year!

I hope that everyone had a great New Year's Eve.  As with most days around here, it went by fairly quickly.  Lynn settled in for the night around 9:30 pm and I headed home and slept through midnight as well. 
Lynn is a bit tired today and has been napping this afternoon.  They've been able to take her off of the oxygen except for when she sleeps so that's a good sign.  They've also taken her off isolation (she wasn't allowed to linger in public areas and the nurses wore masks/gloves/gowns when they were in the room) so she should be able to do her own blog update soon. 
Blood counts continue to be strong and she's managing to eat more with each meal.
The morphine pump is gone now, and she'll use oral meds if she needs them.  The pass to go home is getting closer and closer - keep our fingers crossed for tomorrow as she's ready for a break from here.
Her niece Maddie and Nancy stopped by for a short visit as Maddie flies back to Vancouver tomorrow.  Other than that, it's going to be a quiet day for us.
Wishing everyone a happy new year and all the best in 2011!
Irena