Zeroed out

Today’s beta was 1.6, so there is no need for additional betas. This chapter is closed, but I don’t know how much more there will be to the story of my surrogacy journey with Mia and Urs. There will be a FET in September, but whether the transfer is to me or to Mia remains to be seen. Mia will have a sonohysterogram on July 10. The results will be faxed to Dr. Sleepy, and if her uterus is shown to be structurally sound, Mia will have the FET. The last diagnostic check of her uterus was done within the past year and a half by Mia’s regular OB/GYN, and those results were fine. Next week’s sono is mostly precautionary, so I don’t expect any problems to show. Mia and Urs are cautious, but they are hopeful and excited about this turn of events, as am I. I want this for them.

Of course, I am also feeling a bit sorry for myself. Though we will always have our friendship, I will miss Mia and Urs in the role of my intended parents. I feel secure with them and I know that had everything worked out the way we wanted it to, we would have had an amazing surrogacy journey together.

If this is the end, I will move ahead as well and work on finding new intended parents. I’m rewriting my ad so that it is ready to post and I’m also updating my surrogacy profile and transferring it from a Word file to a private blog, which is turning out to be quite a painstaking task. I always enjoy the matching process, even though it can be daunting. I trust my instincts and I think I’m a strong judge of character, but I still have worries of matching with someone who turns out to be a complete fruit loop. I’ve seen it happen to a few surrogates who I think very highly of and if could happen to them, it could happen to me. I’ve been blessed with three wonderful sets of IPs, each of whom I hold near and dear to me. I just have to have faith that I’ll continue to be blessed with finding great people to work with. 

In other news, last week Frank had a 3-hour long MRI of his head, neck, and spine to check for new Multiple Sclerosis lesions. His neurologist called today while we were out and left a message with the excellent news that he hasn’t developed any lesions in his spinal column. She didn’t mention anything about the lesions in his brain, so for now I’ll just assume that no news is good news on that front.

Also, I’ve noticed that Frank seems to be having slight memory problems, which in MS message board lingo is dubbed
“cog fog”. His short-term memory is sharp; he can remember a grocery
list I rattled off to him three days before, while I can hardly remember what
color underwear I have on. However, when it comes to his long-term
memory, he seems to forget either minuscule, but easy to
remember details of significant events or it takes him longer than it
should to retrieve information that he should know almost off-hand. His neurologist doesn’t have any major immediate concerns but it is problematic enough that she wants to get some baseline cognitive data, so after the MRI Frank also had some initial cognitive testing of his memory with a neurological psychologist. The psychologist asked Frank a series of basic questions about Frank’s biographical history. After he answered, the psychologist would look to me for verification that Frank had given a correct response. As an example of this cog fog, it took Frank nearly 40 seconds say how old his mother was, and though he was correct, he wasn’t completely sure of his answer. The psychologist confirmed an information retrieval lag and has scheduled a full 6-hour battery of intensive cognitive testing. Frank will have 3 hours of testing in about three weeks and another 3 hours of testing a week later.

In the meantime, we have a follow-up appointment with the neurologist on the 9th to discuss the MRI and the initial cognitive consult. Most importantly, we will determine if Frank will continue taking Rebif (an injection given three times per week) or if it is time for him to make the switch to Tysabri (a newer, more powerful medication given via IV-infusion once per month). Some of you might remember my previous freakniption at the neurologist’s suggestion of choosing between chemotherapy or Tysabri (which has a minute potential to cause a lovely brain-eating deadly disease as a side effect) as Frank’s next step. We’ve done some research and though it does give us a minor case of the heebie-jeebies, we think that Tysabri would be the best option for Frank if the neurologist thinks it’s time to move up from the Rebif. All in all, right now Frank is doing well. The MS seems to have released its grip on his thigh and my groovy dude is out at the gym playing basketball.

At the suggestion of a few bloggers, Frank will be donating his two cents (or 20,000 calories) to my blog on Fridays for Frank’s Friday Fixin’s. I have to give thanks to Wishing4One for the name suggestion – oh, how mine heart dost hasten its beatific beat at the pulse of perfectly placed alliteration. Tune in tomorrow for chocolate biscuits with macerated strawberries.

21 thoughts on “Zeroed out”

  1. Catching up: Glad Frank is doing fine. Will be thinking about him. Glad the beta is down and fine. Sorry about the weight gain!! I bet Frank could make you some delicious low carb food! Miss you. Hope to talk soon.

  2. Moxie,
    I’m not sure what to hope for in terms of your journey with your Mia and Urs. As wonderful as it would be for Mia to be able to carry, I will be sad for you if it goes that way.
    I’m keeping everything crossed for Frank.

  3. I’m so glad the test results were good! It sounds like Frank is getting excellent medical care. I had to have the full-day cognitive testing done (for my lupus) and I actually found the process rather interesting.
    I’m thinking of you and sending good vibes your way! ๐Ÿ™‚

  4. kym, listening to you talk about mia and urs it’s so clear what a wonderful surrogate you are…
    I hope frank is ok, the testing sounds brutal. very much looking fwd to fabulous friday fixins with the fantastic frank fartknocker. anything with chocolate and strawberries and I’m there.

  5. July 10th is my bday…so it has to be lucky either way..for Mia OR if she has you as a surrogate for a 3rd transfer…things will work out as they should.
    Keeping you in my thoughts…..

  6. I’m glad that you received good news from the doctors. I’m also looking forward to the Friday Fixin’s!

  7. Glad the doctor visit went well: I’ll be keeping you guys in my prayers.
    I’m looking forward to Frank’s Friday Fixin’s!

  8. For his “cog-fog”, ask the neuro about Namenda and Aricept, which are Alzheimers drugs. Along with Tysabri, they have improved things for me.

  9. Hmm, “cog fog”. I do know what you mean about the memory thing, but on the other hand my husband who does not have MS often forgets thing or can’t think of the right word and I don’t think it’s any more or less than me. However, I don’t remember much of my childhood and I assume it’s because I had 2 seizures that wiped out a lot of my short term memory (plaque on that part of my brain). I haven’t been considering Tysabri because I’ve been successful w/Copaxone, but I’ve heard great things about it. I thought they could test to see if you’re husband will have the adverse reaction? Good luck!!

  10. You read my mind. I asked you a bunch of questions in an email this morning and you answered them in your blog. LOL! You must have known that I was curious about how you all were doing.
    I’m glad Frank’s leg is doing better and that he isn’t gimping around and can enjoy his basketball again. We should see if any of the appointments Frank has are the same days as mine, we could meet up while we are all out there for lunch. LOL! Keep me updated on those tests and I know the decision to switch meds is not an easy one for you both to make. I am certain that you all will make the best decision possible.
    I love the name of Frank’s recipes. I do have a request for a cake he made (has some strawberry, lemon, and coconut in it). It looked fancy and tasted oh so yummy!

  11. Hi Moxie,
    I am glad to hear that Frank is currently doing well, but so sorry to hear that he’s having cognitive problems.
    I have had 22 infusions of Tysabri, beginning in October 2006…, since that time, I have not had one single relapse, and my latest MRI last month showed absolutely no new lesions – which is amazing for me because prior to that, I was having a relapse just about every other month. My MS is now stable, thank God.
    Here is some proven data that Tysabri demonstrates significant improvement in cognitive function with patients that have MS:
    I can tell you that Tysabri has significantly improved my Quality of Life, and the convenience of an infusion every 28 days (with absolutely no side effects, for me anyway) makes me look forward to each treatment with a renewed sense of hope.
    Nevertheless, if Frank chooses to stay with Rebif after his next neuro appointment, I wish him only the very best.
    Take care dearheart, and I send you and Frank many supportive hugs.
    Lauren ๐Ÿ™‚

  12. Oh yeah…Frank’s Friday Fixin’s! How exciting! I love that name, some genius must have came up with that catchy name, LOL!!! Really thats awesome, I can’t wait! I sure hope all will be well with Frank, he’s lucky to have such a Smart One by his side! xoxoxoxo

  13. Hey, I’m glad the beta is down. I’m so sorry that everything is so up in the air for your future with them or others though.
    Hope everything goes well with Frank. He’ll be in my thoughts.

  14. I like the idea of Franks’s fridays ๐Ÿ™‚ I’ll be keeping my fingers crossed for a good and helpful doctor’s visit for Frank as well. You seem to deal so level headed and well with all of the tough decisions dealing with Frank’s MS. I’m not sure if I would be quite as good. I’ll be keeping him in my thoughts – I hope Frank the Fartknocker has a good basketball game ๐Ÿ™‚

  15. I stumbled onto your blog when I googled rebif and fertility??? I am a 35 year old, happily married mother of two boys 7 & 8 and was diagnosed with MS 5 1/2 years ago. I have been taking Rebif since. I have very mild symptoms, the medication side effects are the most of my problems. We have been tossing the idea of surrogacy, since my neurologist feels I shouldn’t risk pregnancy. We agree that I am thankful to have two wonderful and healthy children and my own health as well. I know if I hadn’t gotten MS we would have had a larger family and I think surrogacy is a wonderful possibility. I do not know a lot about it, but what I do understand is that it could be my egg and my husbands sperm and with the right surrogate, this could actually happen…if you have some time I would really appreciate your thoughts on this, I thought it was really ironic as I read your blog that your husband also had MS. My thoughts and prayers are with you both as you make this decision about his meds…I would love to stop taking these needles, hate it! I have a friend who goes into the city once a month for the Tysabri, she highly recommends it, always telling me to do it…the whole brain infection thing freaks me out, no thank you. I think if I had a very bad quality of life and had no other alternative I would consider it, but for now I deal with the rebif. Thank you for any advise you can give me, if I can be of any help let me know…

  16. Thank you for your nice comment, it means a lot. I’m sorry about the beta, it sounds like you had a great relationship with your couple.

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