August 31, 2007-PET scan results

I just got my PET scan results & it came back clear. I am cancer free! I’ll have monthly blood draws/appointments for a year & another PET scan in 3 months just to keep an eye on everything.

August 17, 2007-good doctor appointment

My doctor was gone on vacation for 3 weeks & I finally met with him today. He wants me to wait about 3 months after my transplant before I go back to work. My transplant was July 2. I won’t be able to pull off 10 hour days right away-just take it a little bit at a time. Between months 3-6 I still should not be around people who are sick & there seems to always be someone sick at work, so I’m not sure how that’s all going to work out yet. The full body rash eventually went away-never figured out what caused it. He’s keeping me on the blood thinner pill a few more weeks & then I should be done with that. As of last week my taste buds seem to be back to normal. Food tastes good again & like it should. Yea! I try to make sure I go for a walk everyday to build up some strength. It’s not very fast or too far, but it’s better than nothing. My PET scan is probably going to be sometime the week of the 27th. They’re going to let me know sometime next week what day it is scheduled for. Then I will meet with Dr. Raish a few days after that to get my results. Hopefully by the beginning of September I’ll know if this stem cell procedure worked or not. My doctor seems to be okay with me venturing out more, so maybe I’ll still be able to have a little fun this summer. =)

July 25, 2007-trying to figure out cause of rash

I had another doctor appointment yesterday afternoon. He’s having me stop a bunch of the medications & things I take to try & find out what’s causing the rash. One of the things I get to stop is the Lovenox, which is the blood thinner shot I would give myself every morning & night. I am so glad that one’s done with. No more shots for me. I take a medication for the next 6 months to prevent a type of pneumonia transplant people like me are susceptible to. I also take a medication every 12 hours for the next year to prevent shingles. I have another doctor appointment Friday. We’re waiting on the results of my blood draw to see if we need to adjust the amount of Coumadin I take as a blood thinner.

1st doctor appointment back in Mt. Vernon

Here are some of the things I found out at my doctor appointment last Thursday. The first 2 months after transplant are the most critical. I’m supposed to stay away from enclosed places. There’s no point in me going to restaurants anyway because food doesn’t taste that good to me. Sometimes it tastes horrible. Other times it doesn’t taste like it’s supposed to. Or it won’t taste at all. Eating is not enjoyable right now. I asked my doctor how long till food would taste normal again. Everyone’s different. There really isn’t an answer. He said it could be weeks or it could be months.

My PET will take place 6-8 weeks after transplant, so will be sometime next month. I will have blood draws to check my counts every week for 4 weeks, then every other week for 2 months, then once a month for at least 6 months. 1 year from transplant they’ll check to see if I need my childhood vaccinations or not. 6 months from the transplant they talk about my immune system being back to normal.

I’m still taking the blood thinner shot every 12 hours, along with the pill form since Friday. I’ll find out later today if I can just take the pill form & stop the shot. That would be great since I think the shot has caused the rash I have again. It’s worse than last time though. Besides covering my whole body it’s on my face & head too. It is making me miserable. I don’t think I even fell asleep last night. I just want a prescription to make it go away, but all I’m told to do is put itch relief lotions on it. I just have to wait it out.

My eyelashes are pretty much gone. Some are really short & there are a few long ones left. My eyebrows have really thinned out too. Apparently it takes those longer than hair to grow back. My hair has started to grow back, but you have to look really close to see anything. I haven’t been feeling the greatest since Friday. There were a few times over the weekend I felt like I was going to black out & I had a really hard time getting up & out of bed. I’ve been very cold too, which is a side affect from this whole procedure. I’m just chilled to the bone & nothing seems to warm me up. Maybe it will help that I have another doctor appointment today & so I’m forced to get ready & get outside.

July 17, 2007-home in Mt. Vernon again

I’m home in Mt. Vernon-got here yesterday afternoon. I went into Group Health at 11:00 am to have the Hickman catheter taken out. That went 10 times better than my port a cath removal last year. I only felt a few pinches from the needle when they were putting in the numbing agent & 1 pinch when they were snipping at it to get it out. These things are supposed to be easy to get out, but each time they’ve completely attached to my body. I have an appointment with Dr. Raish Thursday afternoon to find out how often I’ll have appointments to have my blood drawn & checked & have him set up an appointment for a PET scan. We still have to make sure the cancer is gone. If it’s not I’ll need radiation then. So I’m not free & clear quite yet.

Update from Melba

One more update on Michelle. Her white blood count went up considerably each day this week - usually almost doubling each day. Her Absolute Neutraphil Count (ANC) - the part of the white blood cells that fight bacteria also about doubled each day and it was those 2 things that needed to be up to a certain point before she could be discharged. Well, they got way up by Friday, but she was still having a regurgitation problem so he wanted to keep her on IV fluid drip and IV nutrition drip along with all the other 'drips' she was on - anti-nausea, anti-biotic, and who knows what else. Sat. he said maybe Monday or Tuesday discharge, but when he came in this morning (Sunday) he said she could go home if he could get the Hickman catheter pulled out. Well, after 3 tries pulling and tugging on it to no avail, he said she could at least go back to the apt. at Northgate that we've been using and that a surgeon would have to snip at it Monday to get it out. He had hoped the Sunday surgeon on call at Virginia Mason was still there, but she'd already left so we'll wait until Monday and then we can go home to Mount Vernon. Hurrah!!! This was much faster than we anticipated. We are so thankful for ALL the prayers that have gone up for her in that past months - for healing, for not so much pain, etc. She will still be very tired for a while and may not be in crowds for at least a month. As far as work goes it will probably be 2 months - don't think she'd be able to work those four 10 hour days.

We expected this to take longer based on what my boss went through, but her younger age, the reoccurrence only her second time, and the fact that she was in better health most likely were the factors for getting to this point sooner. She will continue on a coule of medications - some for up to a year - and will continue with Dr. visits on a regular basis - sure glad this can be done in Mount Vernon. She will need a PET scan in 3 weeks to look at the lymph nodes to see if the Hodgkins is actually gone and if it isn't she will have to go through radiation. So we still aren't totally out of the woods - and since we know our life on this earth is in God's hands and according to His plan we know that there are no guarantees. We've learned to take each day one at a time. Again, thanks for all your prayers and care and concern for her!

July 15, 2007-discharged from Virginia Mason

I was discharged from Virginia Mason Hospital this afternoon! Woo hoo! My oncologist from Group Health , Dr. Feldman, tried pulling the catheter out of my neck 3 times, but it wouldn’t budge. I was clenching onto my legs for dear life in case it was painful. Thank goodness it wasn’t. It’s a little sore right now though. We’re at the Northgate apartment tonight for one last night. (Sigh) Dr. Feldman is going to call us tomorrow morning when he wants us to come in & have a surgeon do some clipping or something & take the catheter out. I should be home in Mt. Vernon tomorrow afternoon sometime! Yea! I feel good. I’m just really, really tired. I am pooped out just from taking a shower. I’m on a soft food diet right now. It’s very difficult to swallow anything else. I have to chew forever otherwise it just scrapes down my throat-NOT comfortable at all. I am sooooo happy to be going home & finally sleeping in my own bed. I hated the night time because it would just drag on. I had such a hard time sleeping. I finally asked for something to make me sleep last night & it worked pretty good. I am allowed to have visitors, but only if you are not sick or been around people who are sick. You need to be completely healthy. My immune system is going to be down for a long time & I am going to be very susceptible to germs, bacteria, infection, etc. I am absolutely up for visitors & would love to see you. I miss everyone. I really feel very blessed again this second round of cancer as to how everything went for me. Thank you for all your prayers.