Author Archives: mohanna1

Day +6 (10/28/16)

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How low can we go?!?  Not much further according to the doctors.  He said the numbers should start going back up at our next blood work appointment on Sunday.  He did say that everything including me was normal.  Okay you can stop laughing now cause I know you all think I am anything but normal!!

My white blood cell count was 500, platelets 47000, pulse ox 92, temp 36C, hemoglobins 3.3 and blood pressure 107/75.  Now ponder that what you want, they are really just numbers to me but I want to keep up with them for my own records.  I spoke with him about not finding anyone yet to give the after care infusions of rituxin and he said they would help me with that!  How? I don’t know yet!

Now I am going to do some complaining and I am sure that will come as a shock to everyone!  I signed a contract with a lady to supply my caregiver, which I have been happy with, but the administration part has left a lot to be desired.  A copy of the signed contract should be signed and made available to all parties involved and this has not been the case.  Contract states that caregiver supplies blood pressure cuff, thermometer plus other stuff which he had no idea he was to do such.

I had a little bit of tummy ache and he felt my head and said I could have a fever!  With that being a major concern during HSCT, I told Chriss to get a thermometer.  The comment he got back was borrow one from another carer! Unacceptable in my eyes and for what I am paying for the service.  That contract was the main reason I went with this company and for what the administration is making they can supply their carers with the items they list as being supplied!! Had I known that I would have to buy one, I would have brought one from home, I’m sure I only have a dozen around the house so now I have a baker’s dozen! my temp was 36.something, normal again!

I guess I should be thankful that there is only a week left and I’m not upset at the start of the treatment!  Any way things are pretty slow here today and my tummy has calmed down, so it could have been the chilli Mac from the bucket that upset it!

Oh well, until tomorrow which will be a slow day again!

Day +5 (10/27/16)

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It is another uneventful day in Puebla City, Mexico but I feel great!

They came this morning to administer the filigrastam shot around 7:30 am. The battery in the blood pressure machine was low so that didn’t get taken but my temp was 35.6C.  I got another good shower this morning and had granola w/strawberries for breakfast out of the bucket. So far nothing I have tried has been spit-out bad. Thank goodness cause I bought a bucket off Amazon for the house.  I think I can boil water and pour it in and let it set for 15 minutes.

I don’t want to jinx anything but I am going to put it out there.  I feel like I am bending my right knee without help so when I sit down I don’t flop. I can raise that leg about 1\2 inch off the bed which was zero before!  I haven’t tried walking with the Walker yet but that’s coming soon, maybe the weekend! (Mom and Dad you know what I am talking about with my right leg!)

I think I might be losing some hair, the towel was full after the shower! The buzz maybe coming soon too.

That’s about all there is here.  The TV shows that are on today were probably on yesterday!

Good times ahead and everyone have a wonderful day!!

Day +4 (10/26/16)

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I am in a NEUTROPENIC state of mind!! Got my numbers today and I really don’t understand them that well but when I ask I’m told not to worry they should be going back up by Friday which is next blood work.  I do know my blood pressure was 139/77 which was up a little.  The rest my spelling is going to be off I’m sure. My lucecites were down to 1000 and my platelets were 94000.  The doctor said I would have normal counts when released Wednesday.

We were to be at the clinic once again at noon and once again our driver was late! He jumps out of the vehicle and says he’s sorry!  I told Chriss I don’t know why he apologizes cause we all know he is going to be late. He thought that was funny!

All but one in our group has reached the neutropenic stage but the doc says that could be normal.

I got the masks out that I had ordered and they were so much better than the ones that hold the hot air in.  They fit pretty good if you get them opened right but Chriss fixed it for me.  It also doesn’t help if you have a chubby little face like mine!

I am fixing to order me a month’s supply of emergency meals that I am eating now so far they haven’t been that bad and I think they will be cheaper than NutraSystem. That’s what I’ll be having for the rest of the year!

Until tomorrow, good day!

After care help!

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I am coming to all my friends and family in hopes of finding a doctor that will take on my after care when I get home.  My primary care doctor said that he would try to do my weekly blood draws.  My biggest concern is for the rituxin or the generic rituxinmab (spelling) infusion.  It is prescribed for patients with MS and kills the T and B cells. Dr. Ruiz. Is taking a proactive response and not wait for a reactive response.

These infusions are required every two months for as year.

As of today, I have not found a doctor to help me with this after care. My neurologist and the hematologist that gave me my Tysabri have said they would not prescribe it for me. The hematologist did say he would do the infusion. That helps but not a whole lot.  I have sent a letter to another physician for her help and have not got a response.

I am asking if anyone out there might know of a doctor who might would help, please send me their information.  I will go to Little Rock, St. Louis, Memphis, Jonesboro, or Dallas. Anywhere in between!

Please help if you think of anyone and say a prayer that something will come up!  Thank you, Merita

Day +3 (10/25/16)

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Good afternoon everyone!  It is a beautiful day in Puebla City, Mexico.  I’m sitting here in my recliner looking at the building beside us but it is a wonderful day.

They were here about 7am to give me my booster shot.  I only have to have one a day this go around. My blood pressure was 110/67 which is very good for me.  They come tomorrow for another one and a blood draw.

I had the best shower I’ve had since I’ve been here.  No tubes sticking out or bandages anywhere that I had to worry about getting wet.  So far things are going very well.

I still have my hair so I don’t know when it will fall out but I am in no hurry!  Chriss is slowly learning the southern language,  have to explain what I mean some times!

The food that we had out of the bucket was pretty good! Will get to have something different tonight.

Until something exciting happens, will post again tomorrow!!

Must have had 5 on the brain, I had this as day 5 in the year 2015! Fixed now!!

Day +2(10/24/16)

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They came this morning to start giving me the filigrastam ( booster) shot again to help speed up my stem cells to promote a new immune system. They also took 3 vials of blood and the first two times he missed my veins because I think they rolled. I asked him if he could use a butterfly and he said yes.  One prick and we had it done!  I bet he remembers that next time.

We went to the clinic and had to start wearing our masks.  I haven’t gotten the ones that I ordered out yet but I will before I go Wednesday. The ones they gave us hold the hot air in and comes out and fogs my glasses up.  Everyone knows I’m full of hot air!  It was a miserable 1 hour trip.

I got the results of my blood work and the numbers were rattled off so fast that I don’t remember them.  BP was 113/73. Bottom line I am not in the neutropenic stage yet.  We are in the apartment until Wednesday when we do this all over again.

Going to close and rest for awhile.  Chriss’ mom is coming to bring me some bottles of vanilla for the girls since theirs got confiscated!  Them there smugglers, you gotta watch ’em!!

Day +1(10/23/16)

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We got out Neutropenic meals for the next 7 days.  I guess I’ll see how they taste!

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Unfortunately it’s all in bags that you put boiling water on unless the good stuff is hidden on the bottom!  As one of the other girls in the Group said, it’s definitely no KFC bucket!  This is my meals for the next 7 days.

Got to take a shower today and it felt so good.  There really is a good reason for Glad Press and Seal! It kept the bandage pretty dry.  Tomorrow I go to the clinic and the bandage gets removed and it should be even easier to take a shower then.  I had showed Chriss online the picture of the bedside toilet seat I wished I had instead of the rolling one and guess what there was one downstairs by the storage unit, brand new, and we grabbed it and it doesn’t take as much room in the shower!

That’s all that has happened today so I will post tomorrow after I meet with the doctors.

See you soon!

Day 0 (10/22/16)

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Happy Stemmies Birthday to me!  The day I have been waiting and working for has arrived!!  It is now a wait and see game.  My isolation days will start around Monday but I will have blood drawn often to see how my counts are and when I will be in and out of neutropenia.

This was the simple procedure the next one taking the picc line out was the worst!  We all had stitches and of course the doc said they didn’t hurt pulling them out but they always do!  Can’t help it I’m a wuss!! He then took the picc line out.  It isn’t a clear picture but this is the foreign object I had in my body for 4 days.

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Now I know why it hurt when I moved my arm, it looked liked it was 8 inches long. The doctor is holding pressure trying to stop the bleeding.  Can’t spell his name or pronounce it but all the girls that have had the procedure call him Dr Hottie. We had went to Walmart while Marty and Paula were here and bought me a water bottle to drink out of while laying back and it had a built in ice tube to freeze and straw. I told Chriss to be sure and not forget it Thursday and guess what? Yep He forgot it but you know how nice I am and just let it go, NOT!!!  I  gave him a hard time when he sit that rinkydink bottle down and the doc didn’t forget it.  He had to see this bottle when we got in there.   He is very nice and friendly.

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Betsy, Lynn, me, Uta, and Jamie Group 1 in front of Clinic.

This is a picture of the doorman at the clinic and while waiting I noticed you didn’t get in unless you could show proof to get in. They were very helpful getting us out of the van and in to our chairs if need be.

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The following picture is of the Group, our caregivers, and our driver (who seemed to be always late!).

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I think I will close this post for tonight and get some rest.  I’ll proof before I hit post!

Good night all, home in two weeks!!!!

 

Day -1 (10/21/16)

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Today started off on a late note with our driver being late so we didn’t get started with our chemo until 9:30 am.  I think he is comfortable with our group cause it’s been about every day!  But at least today all we had was 4 hours of chemo and was home by 3pm. This has been my most miserable day after getting here.

My readings at 10:50 were bp 125/62 temp was 36.8C. At 1:50 bp was 149/79 in left arm (side with port) & 137/74 in right arm temp was 36.3C

Once home Chriss fixed us a BAT and it was delicious!  This was instead of a BLT! It was a bacon, avocado, and ‘mater sandwich. I think Chriss liked it to cause he went to store and bought more for lunch tomorrow, which suits me! That’s as close to my regular food that I have had besides ice cream but I’m not complaining there.

We decided that I needed a lax for constipation but that wasn’t smart on a nauseous stomach already.  Between p’s & s’s, I’ve spent most the afternoon in the bathroom hanging my head!  Enough of that onto brighter things…..

Tomorrow I get my stemmies back! WOOHOO! Until tomorrow, goodnight my friends!  Love each and everyone of you!

Day -2 (10/20/16)

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Well the day is here to harvest my stem cells.  Got to the clinic around 10:30am and got hooked up to the machines and at 11:30 my readings were 100/70bp and 36.8C , pulse ox of 94.  Was done by 1:30pmreceived_10207515521913494

The blood with the cells go out and just the blood returns. Chriss took me to a restaurant and we had the special. He said it was the way Mexicans eat.  We had a soup, then a plate of rice, then a plate of chicken with cheese & bell peppers(too bad you weren’t here to eat them Mom cause yes I picked them off)

We got back to the clinic about 3:30 pm and Dr Ruiz came in and gave us our readings and we all had enough seem cells harvested!  They called me the queen cause I had the most of 538 million. I told them it was probably the weight but anyway we don’t have to do it again!

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It was dark and I should have reset my lighting but then the doc holding it you don’t ask for a do over!

We have started our next to last chemo and at 4:10 bp was 120/70 temp was 36.5C

It’s 8:00pm and we are still hooked up!  Should have packed a bag and spent the night!  Have to be back at 9 in the morning.  Last day of chemo, YIPPIE!!!

8:15pm vitals bp 120/80 which started out on left arm 162/90 went to right arm 153/72 she used a different machine and it looked much better temp 36.7C

We have made it to the apartment at 9:50 and I am keyed up and with all the water you have to drink, I’ll be up all night!

 

Good night everyone and until mañana!