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.

July 13, 2007-finally off the morphine & feeling better

I’m finally off the morphine & feel well enough & with it enough to say “hey”. I had some visitors today for the first time. At least it’s the only time I remember, if I did another time. =) All my numbers are where they need to be at for me to get out of here. We’re waiting on the vomiting & diarrhea things. Yeah, I know-too much information. Good stuff. =) Right now my diet consists of chicken broth, jello & juice. Ugh. I’m not allowed anything else yet. I would give anything for a big juicy burger & creamy shake! =) Of course minus the lettuce & tomato. I’m not allowed to have fresh fruits or vegetables for a year. There is a slight chance I could be discharged tomorrow-slight. Probably Sunday, Monday or Tuesday. Just have to take each day as it comes. And it might be to Mt. Vernon to Dr. Raish’s care instead of the Northgate apartment into Group Health’s care. That would be nice!

I talked to Michelle about an hour ago - she called me, which is an obvious improvement from two days ago when I tried calling her and she was convinced I was saying something about marriage (which I wasn't) and then just kept mumbling about nurses and food and the bathroom. Not being on her pain medication today meant that we could laugh about how unaware and out of it she had been and how I was feeling bad because I couldn't understand her AT ALL and was trying to get off the phone with her without hurting her feelings. Turns out I probably could have just hung up and she wouldn't have remembered. Good thing I wasn't trying to pour my heart out to her or tell her the code to my ATM in the event of an emergency. She sure didn't remember any of the conversation we had. Either way, it was fun to hear her laugh and to laugh with her in spite of herself. Michelle and I are always good at laughing at ourselves...or each other. Probably even when it's not appropriate. That's what sisters do, right?

Picture from Michelle

This is a view of the Seattle sunset from the 15th floor of Virginia Mason. Queene Anne Hill is off to the left & Lake Union is off to the right.

Thursday Update - Tricia

I just talked to my mom at lunch time - Michelle's white blood cell count is up to 900, and her ANC is up to 198! She did eat breakfast, but it went down the wrong pipe and she ended up throwing it back up. She's been able to refrain from punching her pain medication button since about 7 this morning, and her throat is less sore than it has been.

Update Melba

T+10 - Praise the Lord! Yesterday Michelle's white blood cell count rose from 100 (which it has been at since last week - normal is 4,000-10,000) to 500. The ANC (Absolute Neutrophil Count), which the nurses told me is the part of the WBC's that fight bacteria etc. rose from 0 to 60. So those stem cells must be starting to work!! Michelle even ate part of a popsicle early in the day and for supper had some broth, grape juice, and couple jello cubes - the first she's eaten since last Thursday. She ate that around 6:00 and had kept it down yet when I left at 9:15.

She still sleeps most of the time and still has throat pain so keeps pushing the button for the Dilaudid pain medication that she is now on instead of morphine. But it is a start and we are very thankful. She's still pretty groggy so not much good on the phone yet - maybe a couple more days. Not sure she's up to visitors yet unless you want to just sit and watch her sleep. Though she says her mouth hurts I checked and it is quite pink instead of white with mucositis - gums, tongue, and sides of her mouth tho she does have an open sore on the side of her tongue. So that's a great improvement, too. Friday will be one week in the hospital - I'll try to remember to ask a Dr. or nurse what the criteria is for her to get out or how long they think it may be yet.

T+8 - update evening Tuesday, July 10

Dr. Feldman from Group Health stopped by to see Michelle today about 11:00 AM just when she was vomiting again. And she was itching badly so he took her off morphine (not sure if that's what's causing the itching or not) and put her on Delotid and gave her more anti-nausea medication. The Delotid really put her out - she slept all afternoon and the nurse finally got concerned cuz she was sleeping so deeply so called the Dr. They lessened the amount of Delotid and when Denny called about 7:00 she was finally coming out of it and was awake, but not enough to take phone calls yet.

Her vitals have been stable today - pulse, temperature etc. so that is good. Her white blood cells have gone up a little, finally, from 100 to 200 (need to be in the 5,000 - 10,000 range). Though the Dr. has now changed her diet to fluids like broth, jello, and other soft foods she is still not able to eat. They moved her to another room this afternoon cuz her room was across from the nurses station and they needed it for a patient on whom they needed to keep close watch. Anyway, from her new room she can see I-5 and Lake Union to the northwest - Den said he could see a lot of sailboats out this afternoon.

Tuesday Update - Melba

Dennis went down to Seattle Sunday night and I came home to work for a couple of days. I think I mentioned that my sister Sharon had come over to the hospital on Saturday to give me a breather. I figured as an RN she'd know what to ask nurses etc. It's not like she could visit since Michelle mostly sleeps. She wakes to go to the bathroom, rinse her mouth with salt water to help keep it clean and the mucositis under control - they don't want her mouth to get septic.

Talked to both her and Dennis Monday morning and hope I've got it straight - apparently when she went to the bathroom the pole that all the bags of fluids of various sorts hang on tipped over and she called for a nurse and no one came right away which sort of freaked her out because all these tubes are connected to her Hickman catheter. She later heard nurses in the hall talking about being blamed and she wasn't sure if they were talking about the fact that no one helped her to the bathroom and they'd be in trouble. She also didn't think the morphine line was working right and in the 'morphine state' of mind got a little upset and called Dennis about 8:00 and asked him to come right away. She knows that while on the morphine she doesn't understand all that is going on and wanted to make sure everything was working the way it should be. The new day nurse was very reassuring she said - we understand more than ever the need to have a caregiver with a patient at all times to ask questions and to help with the little things while nurses are busy with other patients. They have added IV nutrition now and more anti-nausea medication because, even though she doesn't feel nauseous, her stomach gets nauseated causing her to throw up, which is never pleasant. Denny said her pulse is down to 104 so that's reassuring. It still needs to get down to about 60 eventually.

Our prayer request is that the stem cells will hurry up and start kicking in to re-form her blood so she can begin to eat and drink the regular way and that the immune system will begin to be in place.

As to visitors - she mostly just sleeps so there isn't much point at this time. As to telephone calls - she's so groggy she can't always comprehend although I did talk to her about 6:00 Monday night and she sounded quite coherent. So, for a few more days we'll not encourage any visitors or phone calls. We've learned to take it a day at a time and to be patient. Thanks again all of you.

Sunday Upate - Melba

T (transplant) +6 - Michelle, though very groggy from the morphine, was able to talk to Dr. Mathis, the hospitalist Saturday evening. Hospitalists are a relatively new thing I guess. Dr. Mathis works for Group Health Insurance and cares for their patients at Virginia Mason Hospital. Michelle has developed some infection in the Hickman line and with no immunities it must be taken seriously. The Dr. said they would know more once the cultures had grown (I guess in a petri dish) and Sunday morning they would decide which anti-biotic to add to her fluid IV. Since she can't keep food down they added Dextrose to her Potassium IV plus an anti-fungal anti-biotic. Drip, drip, drip - she has all kinds of lines dripping into her Hickman lines. She did tell the Dr. she felt fine - with the morphine - was expecting to feel a lot worse, although this is bad enough. The Dr. said she is doing very well at T+6 and her color looks good. Though she felt too groggy and unsteady on her feet to try and take a shower we did take a very short walk down the hall in the afternoon. A technician came by right after that to take her vitals and her pulse was about 150, which is quite fast and her temperature had gone up to 102 degrees. He rechecked that and it was 100 degrees, which shows she does have a fever. The RN said being a bit dehydrated would cause the faster pulse, although Michelle couldn't feel that her heart was racing. So they keep on top of each little thing with some added drug. The next 5-6 days will be the 'low' point until her stem cells start doing their thing.

My sister, Sharon, came from Auburn to spend time with Michelle Sat. allowing me to come back to the apartment to shower and have lunch, although I've been eating Michelle's meals cuz they keep delivering them. Sharon showed me bus schedules so I was able to take one back from the Northgate Mall Transit Center to the hospital - a nice gal named Meadow helped me with a bus transfer cuz I've never ridden the bus. There's no cheap place to park around the hospital - not like Seattle Cancer Care where they stamp your parking ticket to allow cheaper parking. Anyway, I managed to make my way back to the apt. on the bus, but did make a car trip back to VM cuz there were some things Michelle needed from the apt. - at least the parking garage is free after 6:00PM. She encouraged me to go ahead and sleep at the apt. as she's more comfortable with the routine and nurses now. Her attitude is good and we just pray for the stem cells to grow fast.

Saturday Update - Melba

Michelle was admitted to Virginia Mason Hospital yesterday after her appt. at Group Health - her throat was so SORE she couldn't eat or drink and swallowing was very painful. Once she was admitted everyone had to come poking and prodding and getting their own pieces of information - blood draws from her double Lumen Hickman catheter and the veins in her hands, x-ray, blood pressure, temp., weight, etc. etc. She is on fluids, anti-nausea, anti-biotics, and morphine and received 2 bags of blood platelets last evening as her ANC (those are something to do with white blood cells) was too low. She hasn't had a fever and diarrhea has tapered off, which are both very good. She tried to eat a vanilla shake but up it came and she's had a few other bouts of that.

The morphine keeps her pretty well out of it so she wanted me to stay so I can ask questions and write down info. The sort of recliner in the room wasn't too bad, but we are across from the nurses station, which is noisy and of course, she gets checked for this and that all night or a beeper goes off on one of the pumps for morphine or fluids because there's an air bubble or something - not peaceful.

We are so thankful for medications and these great nurses and doctors. - course it would be less confusing if they all agreed on the way things are done, but they don't so it keeps us confused as to what's best. I'm learning to ask questions and suggest things - we just hope they all know what they're doing. :)

Michelle isn't up for visitors and with her white blood cells, red blood cells, and platelets so low she has not much to fight any infection at this point. Supposedly this will continue for at least 5 days so our prayer is that by next Wed. she will be on the upward swing.

Thanks again for your prayers for her - Melba

July 5, 2007-still not in the hospital

I’m still not in the hospital. As long as I’m well enough I’ll just stay at the apartment as long as I can. It’s gotten very difficult to swallow in the last couple days. The food just scrapes down my throat. I have to chew it forever before I can swallow. It was still tolerable yesterday, but it’s not today anymore. It’s painful to swallow liquids now. The last couple nights I’ve had stomach cramping, so I haven’t gotten much sleep. Group Health gave me some anti-nausea drugs to take over the 4th while they were closed, so yesterday didn’t go too badly for me. Mom & I drove down the street to the Northgate Mall parking lot & we could see the Seattle fireworks from there last night.

I went into Group Health today & had my blood drawn & checked & was hooked up to IV fluids all morning. I go back tomorrow morning for the same thing, unless I don’t make it till then. If I get a fever or can’t eat or drink I have to head to Virginia Mason. I’m really struggling on what to do for the weekend. On one hand I’d rather stay out of the hospital if I can. It’s comforting to me to know I can just go into Group Health every morning & let them take care of me. On the other hand they’re closed on the weekends & then I have to worry about everything myself. I have a big decision to make by tomorrow. Ugh.

July 2, 2007-stem cell transplant successful!

The weekend did not go that great. I had a gaggy feeling in my throat most of the time. I just tried to lay still & not move. By the end of the weekend water made me feel like I was going to throw up, so I switched to something with flavor or carbonation even though nothing tasted good. Food left a bad aftertaste too, so I didn’t eat much either. As soon as I got to Group Health this morning they gave me an anti-nausea drug & I felt better. Thank goodness for drugs! I slept almost the whole entire day there.

The Seattle Cancer Care Alliance showed up at 11:30 am with 2 small bags of my stem cell frozen in liquid nitrogen in a big steel container. It took about 2-3 minutes to thaw out each bag in luke warm water in a container on the counter & just before the transplant I was given a big shot of Benadryl, that I felt instantly, so I was pretty out of it. Each bag took about 10 minutes to drip into me through IV. The only side affects I felt were a bad taste from the preservatives that were in with the stem cell & it made my throat scratchy & I coughed. As soon as the bags were done dripping into me the side affects stopped & I slept till about 3:30 pm. I feel fine right now, just tired. I have an appointment tomorrow morning to have my blood drawn to check my blood counts & to get IV fluids.