February 28, 2007

Well it’s day+27 and I’ve been back in OHSU since Feb 24th. I have a bit of redness (doctors call it a rash but Barbara and I don’t see a lot of difference from normal for me) around my neck and my stomach is puny most of the time. There have been many bacterial, viral, and fungal tests done. All were negative.

A dermatologist took a paper punch sized biopsy off my upper back skin and a gastrointestinal doctor scoped my GI track from both ends and took biopsies from both areas. These tests were made to confirm whether I have a mild case of Graft verses Host Disease (GvHD) or some sort of infection. The skin biopsy came back positive as GvHD. The doctors were pretty sure it was GvHD when I came in, but needed to do all of the tests to be thorough.

As mentioned earlier, GvHD is a good thing when mild. It indicates that the graft cells will attack and kill left over leukemia cells, if any were left. I have a mild case since my stomach area has been affected. However my lower tract, skin and liver are doing quite well. They are now treating the GvHD with more steroids and immunosuppressants.

I have been on broth and liquid diet since being admitted. Everyone is so different but a likely course for me from here will be to add some plain white rice in a few days, then crackers and bread in a few more days. After that they will add some simple veggies and chicken meat, then fish. And finally in about a month I can have a steak (they never mentioned when I can have a Costco sausage). Again, this is a guess, not any promises. Oh well, I trust that God has all of that in control anyway.

Again, you all are so important to me. Thanks for your support and prayers.

February 25, 2007

As of Saturday morning Art is once again checked into OHSU. Friday evening he could no longer eat or drink anything without his body rejecting it. He is now on IV fluids and IV medications to help him get back on track.

At this time the doctors are not sure exactly what is going on but they are treating him for Graph verses Host Disease (GvHD). We were told when we left the hospital the first time that this could happen and it does not appear that anyone is alarmed with the situation. On Monday they will run some tests on his GI track for more information.

Overall Art does not feel well and sleeps most of the time. We will be able to go home again when he can eat, drink and do “normal” body stuff again.

We so much appreciate all of your kind thoughts and prayers. God is good – always and He knows what we need.

Barbara for Art

p.s. Thank you to whoever put the WELCOME HOME sign on our front porch that was fun to see when we drove up.

February 19, 2007

Its day+18 and I went to the clinic for blood tests again today. I’ve been on an every other day schedule to the clinic since I was discharged on day+14. I don’t know how long that schedule will be, but it is a real drag to require Barbara to pack lunches, get things ready and drive me to OHSU every other day. Barbara has been so great to me and understanding. I’m so blessed to have her.

I received an IV of magnesium this morning as my count was low. Apparently my electrolytes, like potassium and magnesium, are leached out by the anti rejection meds I’m taking. I am trying to eat foods that are high in potassium and magnesium since those IVs take a long time to administer.

The clinic is a large room with recliners, IV pumps and caretaker chairs all around the perimeter. You go in, take an open chair and are there until labs are drawn, the results come back and any infusions are given. It takes between 2 and 8 hours each visit.

I thought I would feel a lot better by now, but I am told that I will be weak, nauseous, and fatigued for several weeks. This is due to my old and my new immune systems learning to get along. As the new immune system takes over more, the side effects will hopefully diminish. If there is a lot of GvHD, then the side effects will linger until the GvHD is successfully treated.

I’m so grateful to be home. It offers a great deal of normalcy to an otherwise surrealistic journey.

Thanks again for you prayers.

February 14, 2007

I hope you are all having a Happy Valentine’s Day. Barbara stopped by Godiva Chocolates so we could give the nursing staff a Valentine’s Day box. The box she brought was huge. Also, some of you sent flowers and cards to them. You should have seen their faces. They were truly blessed by your thoughtfulness. I guess I don’t need to say who got the best treatment in 7CAO today.

Yesterday my white count was .5 and I was hoping that it might double to a 1.0. The plan was that if it doubled each day, I could have gotten out of here in 5 days. However it did not double as hoped. Instead it quadrupled to a 2.0. WOO-HOO.

The doctors were so impressed that they are planning on sending me home tomorrow. Yes, that is right. I’m going home tomorrow. It’s been less than 3 weeks since I checked in and today is day +13. I am both happy and astonished. I was hoping to get out early, on about day +21. My nurse can remember someone being able to leave on day +17 before, but never day +13. ONLY GOD.

Even though I’m going home there are still a lot of steps to climb. Now is the time when GvHD can start causing problems. Also, I’m still highly susceptible to serious infections. I’m off to a wonderful start and am settling into getting through day +100.

They gave us this pill organizer that is about 14” long X 10” tall X 2” deep. There are 7 columns wide for days of the week and 4 rows high for 4 times a day. Apparently the thing will be full when I leave and is designed to help me not forget all of the meds I will be taking each day.

I’ll let you know if plans change or the next update will be written from home.

Thank you again for your prayers.

February 13, 2007

Well it’s 4:30AM and I was just told that my white cell count is at 500 (0.5 on the CBC report). This is great news because 500 is the point when my engraftment should be really taking off. From here my blood counts should rise so that my white cell counts almost double on good days and at least go up significantly every day.

It is possible that I could be going home in 5 days, but more likely that I will be going home in 8-11 days. There are five hurdles to jump through to be able to go home.

1. My ANC (absolute neutraphil count) must be at or above 1500 (1.5 on the CBC report) for two consecutive days.
2. I cannot have an elevated temperature (fever)
3. I must be eating and drinking sufficients amount for good nutrition.
4. Any diarrhea must be controllable.
5. Any GvHD (graft verses host disease) must be under control.

My mucositis is almost totally gone. I can touch anywhere in my mouth without pain, swallow without pain and I haven’t had to get and morphine shots for pain or ativan shots for nausea since yesterday morning. This is a huge blessing. It is also a sign that my counts are on the verge of coming up quickly. YAHOO!!

Several of you have requested that you be able to help me when I need it. I do have one thing I would like to do and you could help me accomplish this so much better. If you have a spare Thank You card or Valentines Day card, please send it to the staff of this unit. They do such a great job day after day. I know that some extra at-a-boys would really make their days special. If you want to send candy or flowers, they would be welcome too.

Please feel no pressure to do this. It is strictly if you want to do it. You will be writing to the medical staff in unit 7CAO. Address your envelope to:

OHSU
Nurses Station in 7CAO
3181 SW Sam Jackson Park Road
Portland, Oregon 97239-3098

February 12, 2007

It is day +11 since I received my new stem cells. According to the doctors sometime in the next 5-6 days is when we should see my blood cell counts start to rise. The rising counts will confirm that the new stem cells are engrafting in my marrow and they are producing good cells.

The blood cell counts will start rising slowly for the first few days and may even bounce up and down on the way up. Once the total white count reaches 500-800 then the rise will increase much faster. A successful engraftment will be official when my ANC (absolute neutraphil count) reaches 1500 for two consecutive days.

One very common condition that occurs to transplant patients is mucositis. It is a side effect of chemotherapy and total body irradiation and is heightened because my white blood counts are so low. Sores have developed in my mouth, making it very hard to swallow due to extreme pain. I didn’t get sores until a couple of days ago, which is a real blessing.

Most patients start getting sores within a few days of the chemotherapy and have the sores spread until their blood counts rise. In fact, a large percentage of patients have mucositis so badly that they are on a pain medication pump and are fed through an IV. My mucositis pain has been controllable and I am still eating ok.

Other that mouth pain my days have been very uneventful. I used to say boring, but have found that uneventful days are far superior to days when something new has happened. Something new seems to bring with it a feeling of “slight pressure”. Slight pressure is a term used by medical personnel that means extreme pain.

Thanks again for your thoughts and prayers.

February 8, 2007

Today is day +7 and all is well. My blood counts have risen for the past two days. This can mean that the new stem cells are in and doing their thing. However, it can also be a false start that will drop again before the real start.

The doctors have said that it really is presenting itself as an actual rise, but it shouldn’t start until day +10 thru +14. I told them that I have over 100 people praying for me and that can cause a lot of differences. So far they are not buying that. However, they will learn.

Today marks another start. I woke up with a lot of hairs on my pillow. They are all short since they had just started growing from the last chemo. My eyebrows are also leaving. They never fell out yet so it will be a first without them. I guess the chemo and irradiation did its job.

My nausea and diarrhea are still under control and my mouth is still not sore like it should be. God is continuing to bless me daily.

February 7, 2007

First, I need to correct my last email. Today is day +6, not yesterday. I keep forgetting that the day of transplant is 0, not 1.

My Mucositis, nausea and other side effects are still very low comparatively and I’m so thankful for that.

NOW THE GREAT NEWS: I just looked at today’s CBC report (shows cell counts and minerals in blood). Since my chemo and irradiation my red cells, platelets and white cells have been falling and for the past few days have been at the bottom. I have required 2 platelet transfusions and 2 red blood transfusions. However, today the CBC showed that the red cells and white cells went up very slightly. The platelets were up, but I had a transfusion yesterday. I understand that the recovery of cell production by the new stem cells may go through some small false starts, but to see the numbers edge up is pretty cool. I hope I haven’t raised your hopes falsely, but I’m trusting that my new little cells are going and growing.

As always, thank you so much for your prayers and support.

February 6, 2007

It’s already day 6 and all is well. At this point in time most patients have mucositis in their mouths and throats so badly they can’t eat because of the pain. Instead of eating they are on IV feeding. Along with mucositis they will have extreme nausea. However, I have been blessed with very mild symptoms. I don’t have mouth sores and my nausea is very controllable. All and all it has been very easy. I feel so blessed to have been spared all of the normal suffering.

It seems strange to me that I am still getting small doses of Methotrexate chemotherapy. These Methotrexate doses are 3ml and given every three days. It is used to slow down the new stem cells so they do not come in and attack my body too fiercely. The last dose will be this Wednesday. I have noticed that my nausea and mucositis gets a little worse several hours after each of these treatments.

I am at my Nadir or low point in my blood counts now. The next scheduled event is to have the new stem cells engraft and cause the counts to go up. The first evidence that the cells are engrafted should come between this Sunday and the following Thursday.

So far there have not been any Graft verses Host Disease (GvHD) symptoms. No skin rash, liver function problems or digestive tract problems. It is early for GvHD to show up. I’m praying it won’t and hope you are praying for that too. I’m also praying for the new stem cells to annihilate any possible remaining CML cells, if any. Of course, these prayers are always qualified by my desire that God’s will be done and that He is glorified.

Happy New Birthday, Art!!

We now have a new Art!!! We are calling him Artina since his donor was female. He is doing as well as can be expected and is waging war with the nastiest oral medicine - we think it is winning. YUK !! He has to take it three times a day. I hope he acquires a taste for it soon.

For the next 10-14 days we will be watching for stem cell engraftment. We will continue to give you short updates.

Thank you again for your thoughts and prayers.

Barbara with Art

February 1, 2007

Well, today is Art’s new birthday!!! It is 2:15 in the afternoon, the stem cells are here and as soon as he is back from radiation the transplant will start.

A blood clot has developed around the vein supporting his main line where the cells will go in and that has slowed things up but we have been reassured that it is not a serious thing at this point. He will however, be having the line removed and a new PICC line put back in his arm after the transplant is done.

Art is now feeling the effects of the chemo and radiation. He is weak and dealing with nausea yet he keeps up with his sense of humor. Marcus, Tracy, Benjamin and Terra are with us during the transplant. We are all anxious but so looking forward to having this done.

God is good He is always good no matter what we face here on this earth. We are blessed to know that He is the giver and sustainer of life.

Barbara with Art