NHL Cyberfamily

Non-Hodgkin's lymphoma support

 

Nicole Grillo's SCT journal



 

Nicole Grillo's SCT journal

Thursday March 16, 2006 Day -7

Hi folks,

It's been a busy week but we're almost there. We've just finished shaving my head and Joe and Marie had fun putting all the St. Patrick’s Day Tattoo's all over...plenty of photo's so I'll get organized one of these days and send them.

Had a bit of a scare this week. A couple of my best friends whom I spent all weekend with came down with the flu on Tuesday. So far I seem to be doing ok.

My laptop is delayed. A dear friend who works for Joe's office in CA was arranging the setup of it (IT department) and he passed away last weekend. Anyway, it's at his home and we have someone picking it up this weekend after the funeral (which Joe can't attend because of me) and he will overnight it to me. I should be online by mid-late week at the latest. In the meantime, every time Joe visits he may be thinking I'm more interested in his laptop than him as I'll be desperate to get online.

Marie is doing well. Rough night last night but today we did lunch duty at her school and then went swimming after her gymnastics. Then it was dinner and the head shaving...what fun we had.

Joe's ok. He's learned how to pack a lunch box 'mummy's way' and has been trained in the art of online banking. I think getting him prepared is more nerve wracking than me going in!

My admit time is 9am with my Hickman going in at 11am. They did want to do it at 9.30 with an admit time of 7.30...we'd have to leave the house at 5am and as it is, I'm bummed that I won't put Marie on the bus just one last time...perhaps it for the best and I think this will be easiest on all of us.

I'll post on Saturday and let you know how it's going in my luxury accommodations.

TTake care and here's to a successful journey.

Nicole. Saturday March 18, 2006 Day -5

Hi guys,

I haven't read most of the posts as I'm just living for the time when I can sit quietly and take my time when I get my laptop later in the week. It will be a great boredom killer as quite clearly, that's going to be a tough thing for me after only being in here18 hours!

Yesterday wasn't the best day. The OR were running 3 hours late so I didn't go down until 2.15pm for my Hickman port when my appointment was 11am. All that sitting around in a germ infested family/patient waiting room was nerve wracking.

Anyway, I've got my Hickman in and it looks lovely. Didn't work too well this morning so I had to take a deep breath for each pump of blood to fill up the test tubes. This should clear up once I start chemo tonight and it gets used.

HHad my training for oral care last night...it goes like this:6-8am - brush teeth with toothettes soaked in water. Nystatin Suspension (5cc) swish and swallow.9am - Peridex mouthwash, swish and spit 2pm - brush teeth with toothettes soaked in water, Nystatin suspension, swish and swallow 6pm - brush teeth with toothettes soaked in water 9pm - Peridex swish and spit 10pm - brush teeth with toothettes soaked in water, Nystatin suspension, swish and swallow, Gelkam (flouride treatment): with totheete brush onto teeth and gums. FYI: Nystatin is an antifungal, peridex is an antibacterial This will be bumped up once I start having trouble with the mucositis.

Pills: 2 Bactracin, 2 polymyzin and 4 nystatin - this decontaminates the gut. I started these this morning and 10 minutes after I took them I puked them up...better luck after lunch.

I got a shower today...one more tomorrow and then it's on to hip baths.

They have already started to measure all things that come out...wasn't too happy when I walked into the bathroom and saw the two hats in the toilet, back to back, just waiting for me!

Gotta run, I'll post tomorrow, but Marie and Joe are here and I need to eat and I get to leave to go to the bakery while they clean my room and then it's mask up time.

I'll post later in the week about my head games last night.

Sunday March 19, 2006; Day -4

Hi guys,

I did really well through the night. Now that the chemo has started the head games have stopped and I'm in a good mental space.

Peed about every 20-40 minutes all night with the fluids they gave me and the additional 60oz of water that I drank.

Got up and felt pretty good. Had breakfast (the food here sucks) and then took an awesome, long shower, my last in a while.

Joe and Marie came to visit. They're downstairs getting me some soft Kleenex and some magazines. Joe's doing it to distract Marie as I all of a sudden puked my guts out and peed myself silly... big cleanup but my nurse Collette is a dream.

Blood counts this morning (I forgot to post them yesterday): WBD 4.52 (4.99 yesterday), HCT 33.9 (35.7 yesterday, PLT 196 (227 yesterday).

I am being given IV Potassium and Magnesium as these are a little low. My port still didn't work well this morning so I had to cough myself into filling the test tubes. Other than that, I'm doing great.

Dragging a little but that is to be expected and will probably take a nap today. I really like my bed...it's one of those that adjusts automatically to body weight and position so it is constantly comfortable. Never expected to say that.

All in all, it was a good night and should be a cruisy day...a nice toothbrush would be good thought!

Take care and I'll post later in the week and check my emails for those of you who have emailed.

Thursday March 23rd, 2006,

Hi folks,

I finished my TBI this afternoon and have only puked once today. We're sitting here wondering if I'll get my stem cells today or tomorrow.

There's three of us in the ICU unit that started at the same time, Eric next door and a young male hermit further around about 4 doors away.

Things have actually gone pretty smoothly. Apart from some inconsequently nausea/vomiting and a little diarrhea that seems to now be under control, I'm doing well. No sign of mouth sores, I'm sure they're saving themselves for next week.

The TBI does make you sleepy and weak but now that I'm past that I hope to get on with eating better for a few days and building myself up a little for the next round of challenges.

My medications at the moment are: prograf, rapamycin, vitamin e, multi vit., folic acid, nystatin, flouricide, magnesium, potassium, ativan, zofran, compazine and perhaps a few others thrown in for good measure. I finished Bactrim today so I'm done with the horse pill.

I have my counts and once my wireless card arrives, I'll start posting that information...have my laptop but no internet access! Go figure.

Anyway, all is well and I look forward to catching up with the posts next week.

II have a caringbridge site which has similar information to this but I will be updating the photos in the next couple of days...it's caringbridge.org and just type in my name as Nicolegrillo with no spaces. I have one of my Hickman line in place and the toothettes, I'll also put one on of the stem cells when I get a pic.

Thanks for being out there for me...you are such a great help know you are all there.

Friday March 24th, 2006; Day +1

Things here are going ok. Today I woke up feeling really achy. I thought I'd overdone the exercise yesterday but it turns out that it's a side effect of the radiation. Another side effect is VERY dry, itchy skin. It's driving me banana's. The diarrhoea is something else...as Dr. Antin says, it kind of creeps up on you and gives you a big surprise...no *&^%.

I can't wait until my hair falls out. After shaving my head, I can't believe how much it has grown. That doesn't bother me but I noticed this morning while I was washing myself with the gazillion washcloths they think pass for a stiff shower, that the hair on my legs is so long I'm going to have to braid it and tie it around my ankles.

The food sucks. I've probably said that before. It's hard to tell them what I want to eat when it's all nasty. What's worse is the fact that I see the nurses and staff taking their lunch into the staff lunch room and if I'm walking I can SEE it. Yesterday there was a huge container of SALAD, and today I caught one of the nurses going in there with a GRAPEFRUIT. All forbidden foods and something I would love...I'd just go something unprocessed and tart right now.

There are some other things here that drive me crazy, for instance, I don't remember reading in any of the SCT journals that they measure your pee and poop from the moment you walk in the door to the day you leave. I can't wait for the day that I can just use a toilet and flush it...oh the sweet sound of a toilet flushing.

Joe spent yesterday afternoon with me which was wonderful. Our time together the past week or more has been more about making sure Marie was ok and handling the changes rather than 'being' with each other. I really do miss spooning at night...it's one of the hardest things about being in here for so long. It'll be good to see him again this weekend and maybe we can get an hour or so alone.

The transplant was a big let down. I was so tired by 6.30pm that when they gave me the benadryl I took a photo of the stem cells (which look like tomato soup) and passed right out. I woke up as they unhooked me and flushed the line. I don't have the numbers yet but all the nurses said it was a BIG donation and about twice the average...way to go donor. Toni did say that they wanted a big donation and were going to keep the donor longer than average so perhaps this is why the bag was so big...I'll get the numbers in the next couple of days.

My counts are up today...sometimes this happens after the transplant. WBC - 4.0, HCT - 32.5, PLT - 194K, HGB - 11.7. It'll be interesting comparing these numbers to next weeks!

Someone asked for my mailing address: It is Nicole Grillo, Inpatient Mail, c/- Brigham and Women's Hospital, 75 Francis Street, Boston, MA 02115. For what it's worth...and I have no idea where you put it on the envelope or if it matters, I'm on 6A, Room 12.

Thanks folks and have a great day.

Saturday March 25th, 2006; Day +2

I woke up this morning feeling very groggy and had trouble really getting with it. I'm not sure what that was all about.

Rounds went well this morning. The doctors are all great; I call them the stethoscope brigade! They all pull them out and try to squeeze in to listen to my lungs - which, by the way, sound fantastic.

AAfter they left, I got very ill and hit the bed while they filled me up with all sorts of drugs and some benadryl which was to help with the itchiness that I mentioned yesterday. They think this is a reaction to the Bactrim which I stopped taking 2 days ago.

After a nice sleep I had a visitor and then lunch and then tried to watch a tape with the Soprano's but promptly passed out again. Now I'm awake and catching up on my day. 

II'm feeling better with less achiness and less nausea as they are trying to stay on top of that...all side effects of the radiation. Diarrhoea has been pretty absent today, so we'll keep up the Imodium.

My counts today took a dive. My WBC are now 1.25 (4.0 yesterday) and my platelets went dow to 168 (from 194). That's exciting news.

Not much else to report other than Joe's dad is in the hospital with heart problems...he needs a pacemaker, and the fridge at home went on the fritz so I've shopped online to find a model I like for Joe to secure in case ours can't be repaired. I don't trust him to pick out a fridge that goes with out kitchen...still got to keep my finger in the house pie!

Monday March 27, 2006; Full MUD Allo Transplant - Day +4

Hi guys,

Sorry I didn't post yesterday...to many visitors and then I was pooped out.

MMy blood counts yesterday dropped to: WBC 0.51, HgB 11.5, HcT 32.0, PLT 135. I don't have my counts today so will post them later or in tomorrows posting.

We seem to have the nausea under control. I even had an almost solid poop today!

My biggest issue today is that I am not producing as much saliva as is normal so my mouth feels very 'gummy'. This is a side effect of the radiation and could worsen over the next couple of days.

Other than that, there isn't much happening. My energy level this morning was better than the past two days but I feel after a morning of being online that I'm heading for a nap before lunch arrives.

Take care and I'll post tomorrow with my counts.

Love and thanks,

Tuesday March 28th, 2006; Day +5

I am 5 days old today! Woohoo!!

My bloods yesterday dropped to 0.45 for WBC and PLT to 99. Today, my WBC's are 0.43 and my platelets are 68. When my platelets get to 10 they'll start giving me transfusions. I can't wait to zero out on the white blood count and then slowly see it inch up again, indicating engraftment. Patience!

Yesterday was another good day. Joe had Marie out of school so that they could visit another day while in Boston and I got to sit with Joey and Patti for a half hour too. Then Patti took the kids to New London and Joe hung out with me for another hour alone. That's been working great.

I probably won't see Marie now for 2 weeks. This coming weekend because my counts will be so low and kids are germ factories, and we also have Marie doing a sleepover so that she won't notice.

Physically, I continue to do well. Last night I had some burning in my throat and chest so they gave me oxycodone for it which worked a treat on the pain but an hour later I was throwing up from my toes (violent). We got that under control and they doped me up and then I passed out and had a very restful sleep.

My lower back is very stiff. I think it's because the chair in my room sucks and the bed is not the best place to hang all day. I put a sheet on the floor this morning and did some gentle stretching which seemed to help. I may have to make this a regular in my daily schedule as I was appalled at the loss in flexibility in just two short weeks.

Rounds today went well. I'm 'on track' and they are going to prescribe something for the GI tract burning. I continue to need magnesium and potassium so am being given those via IV line.

Other than that, I'm a happy camper counting the days until I can go home and sit on my sofa and sleep in my bed.

Thursday March 30th, 2006; Day +7

Sorry for the delay folks, between visitors and being sicker than a dog, I haven't been online in two days.

Joe visited yesterday, twice, and then today I had my mother and sister in law visit me. What a treat and a great way to make my days pass.

I have been outfitted with a PCA. To us in layman terms, this is the little button that gives me pain meds on demand. It works a treat! I need this because my throat is very raw from the osophogitis which is a term used when you are striped from the mouth to the bum because of radiation.

Also, because of this, I cannot keep anything down, including fluids so tomorrow I'll be hooked up to a line for TPN (total peritoneal nutrition). I tried strawberry Boost and it lasted about 3 minutes so now I'm doing small sips of water until tomorrow. Greg, I just read your post and it sounds about how I feel which is very comforting. It was liberating to tell the inner people that I will not be ordering from them!

My voice sounds very funny at the moment. Mum says it sounds like laryngitis. It varies in severity but is mostly worse after sleep when I haven't been lubing it up with water.

These truly are the dog days of the transplant. My WBC counts are down to .28 and platelets down to 26. My haematocrit is 26.9 so I'll probably get a blood transfusion tomorrow and a platelet infusion on Saturday.

Thanks again for all your support and messages. It really makes my day.

Friday March 31, 2006; Day +8

Thanks for the lovely notes of encouragement. Katrine, you always manage to pull something out of your bag just when I need it.

My blood counts are: WBC .26, HgB 9.8, Hct 26.3 and PLT 16.

I had a great nights sleep last night thanks to 2 mg of Ativan and some compazine. Today, I seem to have slept most of the day, the nurses say that's what I'm supposed to day as my body tries to heal itself as weel as start manufacturing all my cells/bloods. It's that total exhaustion sleep, where I can sit up in a chair but CANNOT keep my eyes open for the life of me. I've never been like this but I'm going with it.I did manage to walk a 1/2 mile this morning too.

The mouth sores I checked out for myself last night. It's really quite disgusting in there, yellow patches, then blistering looking thinks with dark colored blood. Nasty. Still, if I'm not eating or talking there is very little discomfort.

Other than that, I have a little nose congestion.

Drugs: Ativan, scolpamine patch, compazine, zofran, prograf, msgnrdium, potassium, one more anti rejection drug that escapes my memory, assorted multi vitamins and folic acid.

Take care and all my love,

Saturday April 1, 2006; Day +9

Yesterday I slept most of the day but did not have to have TPN. They gave me a scolpimine patch and a little yellow pill to put under my tongue. Something is working because I'm throwing up (one small one yesterday). Last night I even had a great nights l sleep with 2mg of Ativan and some compazine through the night.

My counts today are WBC .24, Hgb 9.4, HcT 26.3 and Plt's of 8. It looks like I will definitively get the blood transfusion.

The only thing that realy bugs me is the mouth sores. They are pretty bad and look disgusting. I also spiked a fever so am getting some extra antibiotics and they are sending all my bodily fluids to see if they can float something up. I will also get a chest x-ray to eliminate my lungs as the source of the problem.

Two ladies are leaving today. I'm so excited for them both although I know it must be a little scary. I guess I'll bet some new neighbours which should be fun.

I have a wicked stuffed nose. Don' know if it's a cold or allergies or just living in perpetual air-conditioning.

Sunday April 2nd, 2006; Day +10

Well, I got up this morning and felt unbelievably well. The mouth has somewhat settled dowm, I had Colette as my nurse (she's one of my 3 favorites), my hair is falling out as sceduled and I had a decent bowel moment. What can I say...I felt on top of the world.

Any way, I was put on antibotics for a fever I developed last night but doesn't bother me. I got my TPN in so felt well fed. I got my platelets and blood products in last night too.

This morning after rounds Colette told me that my counts were up! WBC's 37 from .24, Platelets 66 from 25.6, HgB 11.1 from 9.4 and HCT 30.8 from 25.6. This means that because my bloods have taken an upward turn they are suspecting it to be from engraftment, not just from the blood products!!!!!! I was over the moon.

After my morning walk, where I was joined by Eric from next door and John, who I hadn't met yet (although he was admitted the same day as Eric and I,is at the same stage as Eric and I are. Once we started chatting and talking, another guy (a Newbie who arrived last friday and is doing his last chemo tonight before TBI tomorrow. It was great to chat to the others and we all agree that we should walk each day as the time flies and when you walk more without noticing.

Then on another note, Colette my nurse said is everything ready for when I go home. I told her I had the carpet cleaning quotes and had chosen an operator but was going to have phone in the next week to book that. I also said I had cleaning lady who was working on detailing the house and cleaning all knobs and handles with a bleach solution etc. Then she says ' you know, if you keep this up, you'll be home before Friday, and if not then, early next week...you could have knocked me over with a feather! While I don't want to get my hopes up, it was very uplifing news!!!

And one more note, for the ladies, I got my period this morning. 4 days early, but I wasn't actually thinking I'd see it again and I'm a bit miffed at this new BS. Oh Well.

I guess that's it folks. I hope you all had a wonderful weekend and are enjoying the warmth.

Monday April 3rd; Day +11

Well, it's mostly good news on this front. I didn't sleep that well last night but got up early and felt fantastic with the exception of my throat which was causing a LOT of pain. I've added to my dental regimen Biotene for swishing as the Peridex causes a burning from my mouth to my chest. I've also started today Al-Kal-Ol. This is supposed to cut the mucous and make it thinner, thus helping my mouth feel better.

When the Dr's. did their rounds, they seemed very concerned about the state of my voice, which is high pitched and takes effort to force the air out. This is worse in the mornings after a night of sleeping and thus no drinking to keep it lubed.

I have a CT scan in about an hour to check this situation out and see if there is some swelling or other nasty that is causing this.

I had a great visit this morning with my brother in law, Mark. He caught the train up and we hung out for about 3 hours other than at lunch time when he was able to escape and go eat 'real' food.

If I didn't have this throat thing going on, I could almost say that I'm feeling awesome!

Diarrhoea has been interesting today. It's been pretty active compared to the last couple of days.

Eric from next door came over. He wanted to walk but I wasn't able to go today because I hadn't finished getting all my antibiotics that I am on because of the feeble fevers I'm having. Nothing serious, just a pain in the butt.

Dr. Antin stopped in today and said that I am on target and doing exceptionally well. I'm feeling a little guilty almost that I'm doing so well and feeling great, I guess I'll just have to learn to accept it,

Oops, transportation has arrived, gotta go for my scan...maybe I'll post more later.

Hi again,

Well, just had my CT scan and awaiting the reading of it. Must say I was disappointed in their staff up there on the 9th floor. It took them 3 attempts to get the IV running and whilst I have tricky veins, most medical people get it first pop with a little instruction from myself.

I also just had a visit from the Palliative care doctor...he's the pain man and wanted to be sure I was getting enough drugs! He also was amazed that I'm still continuing to eat a little at each meal.

Take care and all my love, and here's to a better throat.

Evening update

I just had a visit from the ENT specialist. He had gone over my scans that I had this evening and said that all looked fine. He then proceeded to put a tube down my nostril into my throat 'to have a look around'. He did a great job and it was an easy procedure although I got a little emotional. 2nd time for that today and am blaming it on hormones. I'm super P.O.'d about getting my period!

Short and long of it is that he thinks it's just mucositis and as my counts are on the way up shouldn't have to wait too long for this to be resolved. Remember, I also get my first shot of Neupogen tomorrow...Yahoo!

Tuesday April 4th, 2006; Day +12

It's official! My donor cells are engrafting. Yesterday my WBC's were 0.53 and platelets 89, today they are 1.15 and 136 repectively. I will not be having the Neupogen shots as we thought previously as I won't need them and they think they may cause severe GVHD which is something I don't want.

Still on antibiotics and after being scoped last night I woke up feeling a little better and with less throat pain. I think that it is just a matter of time for my throat to heal.

A big secret that we have to share is that everyone thinks that I will home by this weekend. As you know, there are some milestones I have to reach before this can happen.

After my power walk this morning, I had a power vomit. I also have a really sore bum from all the dairrhea. They prescribed Baudroux's Butt Paste for this condition and so I wear a thick slathering of it on my but along with a pair of Depends (big girl pullups). Marie would have a field day with this one...I may have to do it one day to tease her and see her reaction once I'm home.

Haven't seen my neighbors out and about today...I hope they all feel well,

Well, my lunch is arriving soon so I'll sign off.

Wednesday April 5, 2006

What a fabulous day I am having. I didn't sleep very well but can live with that. I am currently off all lines and feel free as a bird.

My voice is slowly returning to normal...I hope anyway, but it sounds very good today, almost normal and less strained, I'm actually trying to 'rest' it today.

The most exciting thing today so far was I got to take a real shower...my first since March 19th! It felt awesome and I stayed in there a looooong time. Then it was back to reality and into my pod after a short walk.

It's snowing a little at the moment and looks quite pretty.

I have pretty tender feet that are starting to peel and also hands that get red every so often. This could be a reaction to one of the anti rejection drugs, so we are changing it to pill form instead of IV.

My hair is falling out at at an alarming rate and am having trouble with it as I either look like a Emperor penguin or a llama during the malting season,

Doctors visits have been going really well and are very encouraging. They are working on some goals I need to do deep down. Harard school info the hackers can hack off me.

My counts were all up again. WBC 127 (if I'd had the Neupogen shot yesterday it would have been around 3-4), HGB 11.7 HCT 32.4, and the PLT 141.

Thursday April 6th, 2006; Day +14

Well, it was another night of frustrating sleep and I think it is because I can almost feel my own bed and it's teasing me. I got up this morning and when the docs. did their rounds gave me the thumbs up that I'm doing a good job.

Then I proceeded to eat a bowl of cereal with peaches and a frappe for calories.

After breakfast I high tailed out of the unit for a shower again. I was in there for 30 minutes and it was bliss. Now I'm sitting here all unplugged. The only thing they'll give me now is fluid, antinausea and antibiotics. I'm done with TPN, done with the pain button.

I still have trouble talking. It's a large effort and one I worry will hinder my exit from the Pod for good. I guess we'll just have to ride that one out.

My pharmacist has put in for all the meds that I will need to take home with me. The nurses are working on my release papers. I should be out by Sunday, God Willing.

I've been for my morning walk which did seem to make me more tired. I haven't seen many of the guys on the floor, most of them have their curtains drawn poor sausages! I worry about them. One of our patients on the floor is getting their tranplant today...it's going to be a stinky one but they have him in a room with a sliding door so that the rest of us don't suffer.

My bloods are: WBC 1.86, HgB 11.5, HCT 36.5 and PLT 189. Dr. Alyea said that whilst my counts are heading up, there hasn't been anything dramatic. He did say that there are a ton in production just waiting to be released and then we should see the big jumps in numbers.

Thank you all for your wonderfully positive feedback. I'm am privileged to be able do this for you just as I was galvanised to Sandra Yamano's.

Friday April 7th, 2006; Day +15

Well, I don't have my blood counts but they are inching their way up. The poly's or Neutraphils are increasing slowly so they may give me a shot of GCSF (whatever that is). This should make my poly's increase nicely. The Poly's are the only thing keeping me here.

Once my poly's are up to the right level, they will take me off antibiotics and if I'm a good girl, they will release me 24 hours later.

Last night I had my training about being back home, the pharmacy dropped off the grocery bag of drugs that I get to take home with me.

I have a nasty blister/sore on the inside of my lower lip. It just doesn't want to go away and gets very tender and swollen.

My voice is slowly making a comeback. I'll try to rest it today in the hopes that I get it back fully by tomorrow.

Good nights sleep and a joy not to be hooked up to anything...freedom.

Saturday April 8th, 2006; Day +16

After a rotten nights sleep because of bone pain that came as a result to getting the Neupogen shot, I had a great visit with the doctors. My bloodwork has shot up. WBC 7.42, PLT 215. The deal is that if there are no fevers and I can eat their nasty food, I can go home tomorrow. Hickman removal didn't happen yesterday as planned so it's definately on the cards for today. Not looking forward to it but once it's done, i's done.' Thanks and I'll keep you posted

Sunday April 9th, 2006; Day +17 HOME!

Well, I'm home and what a joy to be sitting at the computer rather than my laptop. Leaving the hospital wasn't emotional although I was exhausted by the time I got in the car just from packing up my stuff. My WBC are over 15.05 which is the highest I've ever seen them...don't know the other counts. My next day at Dana-Farber is Tuesday, 2 days away! Once home I proceeded to make myself a toasted cheese sandwich and discovered it tastes the same as hospital food...bummer. I guess this is like this for about 6 months to a year. My biggest challenge was climbing the stairs. I was whipped once I reached the top but figure it to be a small amount of conditioning each day. I then got into my bed and passed out for a couple of hours. Now I'm up, re-showered and going to head on downstairs. I'm still knackered but I guess I'll get used to it. All my best, it's great to be home.

 


website
statistics