Ivan rocking it since 2003

[Ivan]

I'm back home, and my pain is barely noticeable at maybe 1/10. Planning to chill out in the sun and rest for a couple of days. I can wash my head on Saturday. I already took a shower right up to the neck yesterday. Stitches come out 7 days post-op via the family doctor. Gentle bike riding can resume whenever there is no discomfort, but I guess I better not sweat until I can wash my head on Saturday.

Four more days of Dexamethasone 2mg (steroids) - 3,3,2,2 daily tablets and then no more. No swimming, and no sauna for up to 4 weeks.

I'm planning to go to the gym in a couple of days and just do some light stationary bike, stretching, and other routine exercises. Legs hips and knees do feel a bit stiff after lying in bed for a couple of days. Dr. Toyota said that harder physical effort activity can ramp up starting starting next week, and there are no counter-indications after the second week. Basically, my level of discomfort should be my guide.

Debbie

"Left craniotomy and parietal lobe tumor resection".

[cachabamba10]

Hey Ivan, I am glad surgery went well and that you are doing okay. Remember to breath when they take out the staples I completely forgot and almost fainted lol. Also, after they took out the staples, I kept touching the incision thinking it was going to open up but no worries it didn't.

Take care guy;

Mario

[jcs2007]

Ivan, glad you are doing so well after surgery. Thanks for always sharing your journey with the rest of us. My son dislikes the MRI but this is why I insist on having it done. His last brain MRI was ok but we did have a slight growth in one lung met so waiting on comparison results from today's ct. Wishing you a speedy recovery. Cindy

[Bonni Hess]

Welcome Home from the hospital Ivan and happy chilling in the summer sunshine
With gentle hugs, deepest gratitude for your thoughtful updates, healing wishes, and continued Hope,

Bonni

[Ivan]

I scheduled a bone scan for June 11 yesterday. I don't think I've had one for 2 years. My disease seems to have become a bit more active lately, so I will be more cautious with scans for now. I'm guessing an abdominal CT should be a good idea along with my planned post-ablation scan in August. I'll double check with my oncologist, since I don't remember when I last had it. I'm thinking a year as well.

I feel really good. I'm going to the gym for a short workout later - absolutely nothing strenuous. I can wash my head today, and I'm just generally very bored.

cachabamba10

I think I'll be fine. I've had them taken out after my thoracotomies and the skull doesn't seem that sensitive in comparison. It's not a pleasant experience, but should be alright for me.

jcs2007

MRI is the best scan. It doesn't expose the body to radiation at all, it just takes a while. In retrospect I would much rather have had them a bit more frequently than 12 months. So many friends have died from un-diagnosed brain lesions which could have been treated easily at smaller sizes.

Bonni Hess

Thanks Bonni. I see you posted accidentally without logging in. I fixed this, so people will be unable to do it in the forum in the future. Some permission problem.

[Bonni Hess]

Thank you for fixing the name designation on my post Ivan. You are amazing to be so on top of things only four days after brain surgery!! I am glad that your brain is functioning very well with no negative impact or deficits from the surgery . I had tried to sign in, but it said I was already signed in, and then it posted my message as "Guest"! The mysteries and frustrations of the internet!
It is wonderful that you are feeling so good post-op, and I know you will feel even better once you wash your head and are able to feel clean from head to toe . Hopefully your work out at the gym will provide a good outlet for your energy and help resolve some of your boredom, but just don't overdue as your body has been through a lot with your brain resection earlier this week and it needs time and rest to heal completely.
I think that you are very wise to be more vigilant with your scans for now, and I agree that a full body bone scan as well as an abdominal/pelvic scan in addition to your regular chest CT and August post op brain MRI are important. Based on our experience with Brittany's disease and others who we have followed, when ASPS becomes active, it is much less indolent and can spread more rapidly and widely to other areas of the body so vigilant scanning and pro-active treatment are critically important. I know and understand that radiation exposure from CT scans is a huge concern, but unfortunately, CT's are the only way to diagnose/monitor lung and bone mets which must be found at the smallest possible size and before they become symptomatic for the best treatment outcome. It is a double edged sword, but we feel that we have no choice at this time except to continue regular chest/abdominal/pelvic CT scans every three months for Brittany given her history of widely disseminated mets.
It is a cooler cloudier day here in the Seattle area, but Hopefully you have sunshine in the Vancouver area and will be able to enjoy being outside this weekend. Take care Ivan and know how deeply your gracious shared information and updates are appreciated and valued, as well as all that you do to keep this Web site functioning and running so smoothly.
With more hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[Ivan]

It was very enjoyable to have a light workout at the gym today. Did a bunch of stretching, recovery type exercises and an easy 1/2 hour on the bike. About the only thing I felt was maybe slightly light headed a bit here and there.

Washed my head with shampoo very carefully just now. Nice to have fresh hair, and the incision looks fairly clean.

[Josh]

Hey Ivan, very glad to see the surgery was a success and that things are going well. I hope you get your scans scheduled soon and that they show no new evidence of disease.

[Ivan]

To anyone who wants to get a brain MRI, but their oncologist is too stupid to give it to them without symptoms, here is a list of published literature which supports the practice - http://www.cureasps.org/forum/viewtopic.php?f=8&t=796 Seriously, we've had multiple people die for this exact reason. The ignorance is mind-boggling!

[Amanda]

I am still trying to book an open MRI! They wont knock me out for it I wish i could getin the dam MRI machine but i cant

[Bonni Hess]

Dear Amanda,
Having a brain MRI is critically important for all ASPS patients as Brittany, Ivan, and many others have learned from their experiences. Would it be possible for you to be given conscious sedation or some very strong sedative to try to relax you? Also, since it is a brain MRI that only involves scanning your head, it seems that it would be unnecessary for your whole body to be in the MRI machine which might not be as claustrophobic for you. There must be some kind of a resolution to this issue given the importance of having this scan. Children are sedated for MRI procedures, so it is unreasonable that severely claustrophobic adults like you cannot be, and I strongly encourage you to demand an explanation as to why this isn't possible and to continue to pursue it until you succeed in having the scan. It is much too important not to!!
With hugs, special caring thoughts, and continued Hope,
Bonni

[Ivan]

I've discontinued the use of steroids on Sunday night. I would say that I felt noticeably worse yesterday - probably because of it. Just felt weaker, my head was more tender, a bit disoriented, etc. It's not a major difference, but definitely noticeable. I felt like my sinuses were acting up a bit, like I had eye bags. When I was going to sleep it seemed to me like there was a mild "flashing" light with my eyes closed. Went away.

Stitches come out in a couple of hours. Can't sleep on the left side because of them, so can't wait to get rid of them already.

[D.ap]

Hey Ivan

In reference to the steroids, I assumed that you took your last dose as prescribed and are feeling the effects of the withdraws?
My dad, Joshua's grandpa, had COPD and needed steroids from time to time in aiding his breathing. So with that being said I recall him eating bananas for potassium purposes to move the fluids thru as the steroids cause fluid retention

If you care to share , what steroid were you taking?
I hope this conversation finds you feeling better. It takes a bit of time to rid your body of this energy bewster but it will happen.. hang in there.

With special wishes of continued recovery,
Debbie

[D.ap]

PS Maybe talk to your Onc as well. There is a method to allieviate the systoms with or without additional drugs.

Debbie

[Ivan]

Dexamethasone. It was a very light dose, 2 mg per day. I've seen people prescribed 40 mg of this same stuff. I am feeling fine. Stitches removed - painless procedure which took just a few minutes. Decided to relax and not go to the gym today since I had to go to the hospital for a bone scan, then come back 3 hours later, and then yet another time to get the stitches removed at the family doctor's office.

The incision looks MUCH better without the stitches. There's a small "dent" in my skull where the scar is raised a bit. Just inflammation, nothing major. The area doesn't hurt unless it is touched. I would still say that today and yesterday I feel a bit "weaker" than on Sunday.

On the downside, looks like I have a stress fracture in my ankle that I sprained months ago - at least that's what the technologist at the bone scan figures. No wonder this POS takes forever to heal I'll have to rehab it more carefully and consider the options once I get the full report.

I'm having my abdominal and lung CT's together at the end of July, my oncologist has already requested them to be scheduled. In around two weeks I'm seeing Dr. Toyota (neuro) for a follow up.

Other than that, back to recovery and enjoying the summer. Hopefully in about 1 week I can forget this ever happened.