#24 Monday and All the Other Stuff

[cocogirl]

Monday, I will have the supposedly critical #24. I am not fearful of this anymore than the other infusions.

I will start the day having and MRI of the brain, c-spine, t-spine without and with contrast. This means I will be taking my happy pill for such a long stint in the tube.

After that is finished I have to be driven, I won't be able to drive myself, several blocks away in the med center menagerie for my infusion. This is to be followed up with my neuro appt. I have much to ask and to tell since last visit.

I am not getting to have my dh take me because he is missing so many work days dealing with his recurrent cancer treatments. This means a good friend from church will have to drive me everywhere and help steer me to the offices once I am in the building. I walk like a drunk and talk like a drunk when on my happy pills.

We shall see if she is still my friend after volunteering for this duty. I have already given her my mea culpa in advance and hope she realizes it is the pill and not me that she is dealing with on Monday.

I need a lot of prayers and positive thoughts to get through this because of the added intense stress of my husband's cancer which has metastasized in his spine. Please remember him and me!

[LL60]

cocogirl - you certainly will be in my thoughts and prayers. You have a lot in your life. I hope once you get past this number 24, that you can sort of let it go. I figure 12 - 24 -36 - 48 are the big infusions to get though. After 48 you just sort take it one month at a time. Hopefully by then PML will just be another treatable problem.

I go for #17 next Friday. It has worked great for me. This week has been tough, fatigue like I have never known. But we are having weird weather and that may have something to do with it. 112 one day and 88 and 100% humidity the next. Just weird.

I hope your husband beats his cancer. So many do nowadays. So keep that in mind. And I am sure your friend will be there for you. You have a busy day. Plan on just staying home and kicking back on Tuesday. Maybe someone could bring you in dinner. Or you could make something and freeze it over the weekend.

Let us know how your big Monday goes. And I am going to go start my prayers for you right now.

[cocogirl]

LL60, if only I could stay home and rest on Tuesday but I can't. I have to take my dh to the oncologist for his first chemo treatment. It will take 8 hours for the infusion. It doesn't start till 11:30 a.m. and I shouldn't drive at night but will probably have to because they said to prepare for dh to be very nauseated. I am praying they are wrong. Even if I don't have to drive home, I have to stay with him the whole 8 hours and they don't have comfortable places for the family to sit. I am just praying that the MS will keep from acting up.

Thank you for your concern and positive thoughts for my dh.

[lindaincolorado]

cocogirl, you and your dh are in my thoughts and prayers.
Linda

[Myoak]

cocogirl,

I'm saying a prayer for your husband and you, may the Lord's strength support you both.

My wife has received tysabri since 2002 and continues to do well. Somewhere very close to 90 infusions.

Best Wishes to You

[cocogirl]

I have been back home for about 3 hours since having my infusion, mri, neuro appt.

I made it through the very long MRI. 1 1/3 hours is a long time to me but I took my happy pill and just prayed and sang praises, in my mind, and all went well until I crashed during the infusion.

I have never felt so crummy after my happy pill so may not take it next time.

My MRI showed 2 extremely large spots on the left side of my brain. He wants the radialogist to compare with previous scans and see if they have gotten larger. Neuro thought they had.

I have been prescibed a rollator now which I asked for because he quad cane is not getting it for me and I am having more issues with the muscles not working at all after 10 - 20 minutes of standing or walking.

I also was given a lidoderm patch for the burning sensation on the left shin that is not letting up. The patch was prescribed because he knows how susceptible I am to the sedative effects of meds and he felt with my needing to take care of dh with his chemo and radiation, I should not try Neurontin yet.

I will go back and have # 25 on Nov. 1 and am happy to do so. With all the heavy stress of caring for my dh, I need to keep the MonSter at bay and I think Ty does that best for me.

Thanks for listening.

[LL60]

Cocogirl - I will be thinking of you and your husband tomorrow. Take a couple of pillows with you, it will help your back during your long day. Get up and walk around too. Help your husband get up now and then too or have someone help him. Be sure to ask them to turn the lights off around his chair if that would help him sleep some.

So sorry your family is going though this.

[cocogirl]

Thank you all for your kind thoughts, concerns and prayers. I didn't get the bump off my infusion but the neuro thinks that is happening because of all the stress on me right now. He did talk about the Fingolimod, I can't recall the name Novartis will sell it under. I just don't think I want another pill to take considering all the abdominal issues I have had this year.

I came away from the appt with a prescrip for patches for the nerve pain, not the Neurontin pills. I also was given a prescip for a rollator but don't know if insurance will pay. They may call it a durable medical good and not pay but I need one anyway.

My dh did better than we expected with the chemo. His biggest issue was the severe back pain from the 2 tumors on his spine. We have great hopes that this will go away very quickly now that he is having radiation to reduce size of tumors.

They did tell us that with this chemo we might see the bad nausea on the 3rd day. He is working today and will have his PET scan tomorrow so I will be back at the drive to the med center.

I wish that the Ty was giving me the energy boost. Do you all have any suggestion for meds for more energy? Is this something Ampyra would possibly help me with? I know so little about the meds for my own problem.