Let the healing begin...

Doctors appointments....

I had my annual physical yesterday followed by my appointment with my oncology doctor. My creatine is still at 1.9 which may be my new normal. It hasn't changed in the last 3 months. The rest of my labs are good, although my serum free light result is not back. This is the one which reflects my myeloma status. The only problem I am having is pain in both of upper arms. I have lytic lesions from the myeloma. I have to take pain medication before going to bed in order to sleep and I still wake up in pain if I lay on arms. I am just getting over an upper respiratory infection , my first one since Sept. Bob and I are going to Florida for week this Sunday. Plan to soak up some nice warm sun rays.
We had a nice Thanksgiving at Jen and Dave's house. Unfortunately we didn't get any pictures.
Here is a picture of Dean taken the first of October. He is 8 months old already and a real cutie pie. He even wears his hair the same as Grandmas.

Good report...

from my oncologist. All of my labs are good and I remain off all mediction for the myeloma. My creatinine at 1.8 is remaining stable in this area but has not returned to normal. I did however start on some insulin to see if I can get better control over my blood sugars. I was taken off all of my oral medication when I had the problem with my kidneys in May. My hemoglobin A1C was 7.6 which is too high. I had an eye exam last Thursday and I still have no damage to my eyes from my diabetes, even with all the the steroids I was on. Praise God! My mom is getting ready to head home to Florida next week. She is ready. She is not a lover of Michigan's cold winters and it is already getting too cold for her. Jennifer had a nice going away dinner for her last weekend. She is such a wonderful daughter-in-law and a great hostess.

Checking in...

not much happening. Dr. Goldman called and cancelled my last appointment. He said that I was in remission and did not need to see him for a month. My appointment is next Thursday, Oct.19th. It feels so good being off all of the myeloma medication and having a clear head. I am still bothered with the horrible neuropathy in my feet, legs and hands. I am so blessed to be feeling as good as I do though compared to last year.

Beach House...

Here is a picture of Julie, Dean and Danielle at the Beach House. See the lake in the background? It was so lovely just looking out the window. For some reason I had trouble posting this picture on the previous post.

Good News....

Yesterday I had a bone marrow biopsy done. Today Dr. Goldman called with the results. He told me my bone marrow was normal (plasma cell 1.3%) and that I am in remission. Thank you all for your many prayers and Thank you Jesus for answering them. I have an appointment with next week and I will find out what my future plans are.

A Quick Update....

two weeks ago on a Friday I developed a high temperature (104.4º) along with severe chills. I went to the ER and was admitted to the hospital. I had blood cultures drawn and was put on antibiotics and fluids. I was so disappointed because Bob & I were all set to go up north to Frankfort the next day with Julie and Andy. I told everyone to go up north without me and to have a good time. Sunday when the blood cultures came back negative and my temperature remained normal I was discharged. Julie and Andy drove home to pick me up and took me up north for the rest of the week. It was so nice of them to drive back 4 hours just for me.repiraGood news-my creatinine level is now 1.6, closing in on I was fine the whole time we were up north. Then this last Tuesday I started feeling sick again. This time I got an upper respitory infection. On Wednesday I started taking an antibiotic. I am starting to feel much better today My cough is almost gone and breathing is much easier. I will be seeing Dr. Goldman Wednesday for my bone marrow biospy. We all a great time at the beach house on Upper Lake Herring.

My Belated Birthday Present...

was having my softcell catheter removed today. The surgeon removed it in his office. He froze the area on my chest with lidocaine and then used a scapel to dislodge the the cuff and it was then pulled out with no difficulty. I am so happpy to get rid of it. The dressing was driving me crazy, it made my skin itch so much.
As a follow up to my last entry, my creatinine was 1.7 at my last visit. Still not normal, but at least it continues to improve.

Appointment with...

Dr Goldman went well today. I told him I was not going to complete my sct and he was fine with my decision. He plans to follow up with my serum free light results monthly and doesn't plan a bone marrow biopsy at this time. I was happy with his plan. I won't know my lab results until Monday, I will post them as soon as I get them. Hopefully my kidneys are continuing to improve. I couldn't get an appoinment with the surgeon until Aug. 3rd to remove my cathetor from my chest. So I am stuck with it for another 2 weeks. It doesn't hurt but the covering makes me itch and I will be glad to get rid of it.

MaryLou, Karen, Kathy, Connie & Sylvia came over to visit last night. Karen & Kathy are visting from Washington DC for a few days.

My SCT has been put on hold....

until early fall at the earliest. My creatinine is still to high to consider proceeding with the transplant. My creatinine today was 1.8 which means it is very slowly coming down. I will see my oncologist from now on and not follow up with Karmanos until my kidneys are healthy again. I found out that I can extend my insurance until Nov 07 so I can wait until next year for my transplant- if I choose to have it. The doctor is concerned about whether my kidneys can tolerate the high dose melphalan. I sure do not want to cause so much damage that I would require diaylsis. I will need to really consider whether it is worth the risk. I will be talking to my oncolgist Dr. Goldman about this next week. At least I do not have to make the decison to finish my sct at this time. Thank God.
All prayers will be appreciated. : )

Our 4th of July Party....

was really nice this year. The weather was fantastic. It was nice and warm and no rain this year. The grandkids are all getting big and are so well behaved. The cotton candy machine is still a big hit with them. Sylvia is a great hostess and ends up doing so much work. Wish I could help her more. I am posting a few pictures of our fun day.

A slow but steady downslide...

my creatinine is now 2.0 Still not close to the 1.2 I was looking for but never less it is going down. I do not have to do the IV infusions any more but I need to continue to drink a lot of fluids. 2 weeks ago they had me resume my diuretic because my blood pressure was getting high. Now today I was told not to take it because it is bad for my kidneys. I was a little upset about that as it could be the reason my cr didn't come down as I had hoped. I was put on Lopressor for my blood pressure. I go back to Karmanos in 3 weeks. Dr. Ayash told me that my SCT would be postponed until at least September to give my body time to recover before proceding. I hope that I continue to have sucess with my softcell line as September is a long time from when it was placed May 2nd.
Yesterday we had a great birthday party at Steve & Jen's for Max, who turned 7 on June 16th. All of my grandkids were there and they had a good time swimming and playing together. Of course Dean did his usual thing-Sleep.

Brightmoor Christian Church..

is where we went to church today. Our plan was to hear the new (7 months) pastor but he was on vacation today. We were pleasently surprised by having Wayne Kraiss preach. He and his wife Barb made a surprise visit from their home in California. After church Bob, my mom and I went to the Family Buggy for lunch with my cousin Fran. It just happened to be her birthday. After lunch we had a very nice vist at Fran's house and we got to look at the house (from the outside) I grew up in. Things have really changed there in the last 26 years since my mom sold it and moved to Florida. Today was a very good day.

Baby Dean is getting big..

and starting to laugh at Grandpa. We had a nice visit with him and Julie on Wed. Here are couple of pictures of his visit with us.
Nothing new to report regarding my kidneys. The swelling in feet continues to be absent most of the time. I have a little swelling in my left foot when I am walking a lot and not keeping my feet elavated.

It's coming down..

my creatinine is 2.8 which means my kidneys are getting better. I am going to continue to take IV fluids once a day and drink lots of fluids. My next labs will be in 2 weeks (June 21st) and I am hoping my numbers will be normal (0.5-1.2) by then, They are thinking I should be ready to finish my transplant by July. I told them not until after the 4th of July. We have a big family party every 4th of July and I am not going to miss it. I also have a wedding of my niece Angela to attend on July 1st. So I have two happy events to attend before I go into the hospital.

The swelling is gone..

from my feet for the first time since I have been home from the hospital. I am taking it to mean that my kidneys are really working good. Jack and Max are spending some time with us while Steve & Jen are out having some private time. Umm. : ) Actually they are at a tatoo parlor if you can believe that. They are having their tatoos embellished.

I'm in a holding pattern

Not much new to report. I'm continuing with the fluids and will have my labs rechecked on Wed. I have been feeling nauseated a lot lately and the antinausea medication dosesn't seem to help. I am able to eat salads and fruit but thats about it. This may be my ultimate diet. : ) I am going to see if I can tolerate some cheese tomorrow as I need to have some protein.
My Uncle Lewie went into Providence Hospital today. They think he has CHF and they need to get some fluids off his legs. Hopefully he will only be in for a few days. Please pray for his speedy recovery.
Good news to report-Lots of new babies lately. My cousin Gene Doot is a new Grandfather to a little girl Hailee born January 30th. My Grandson Dean was born March 21st, My niece Angie had a baby boy-Elliot born May 17th. My cousin Larry Doot is a new Grandfather to a little girl Lauren born May 30th and his sister Sally Law is a new Grandmother to a little boy-Benjamin born June 1st.

My labs are improving

My cr. is finally down to 3.8. I will continue to drink fluids and get my IV fluids for the next week. My next lab draw will be next Wed. I feel like I am on vacation. : )
The swelling in my feet has gone down some for which I am grateful.

Baby Steps...

in the right direction. My cr is 4.3 today. Will continue with the fluids and I will have my labs redrawn on Wednesday. Steve, Jen and the boys came over with pizza yesterday for dinner. After they left here they went to a bonfire at Sylvia's but I was too pooped to participate. Hopefully everyone had a good time.

Status Quo....

My cr is 4.7, down a little but at least it was down and not up. I will continue to hydrate myself and have my labs rechecked on Monday. I am looking for a big change.
One of lines of my softcell became occluded but the chemo nurse at Karmanos was able to clear the line. Thank God.

No new changes...

My creatinine is 4.9 so we will continue with the fluids and hopefully my kidneys are on the way to healing. I return on Friday for repeat labs and hopefully the cr level will finally start coming down. I connected myself to the IV pump without difficulty, which was really good as they forgot to send any instructions with it. My homecare nurse told me how to add a new bag and reprogram the pump. It really was quite easy. Just the same it better once you have hands on experience. Sylvia is going to stop at a health food store tomorrow and try to get me the Papaya juice that was recommended to help lower the cr level.

A Bump in the road..

I got a phone call last night that my creatinine (cr) level was high 4.1 and that I needed to increase my fluid intake and stop all the suppliments (mg. K*, neutraphos) I was taking. I had to return today to have my labs rechecked. Today my cr was 4.8. They feel I have Acute Renal Disease and that hopefully my kidneys will heal on there own with a little time. I had a ultrasound of my kidneys done to make sure there is no blockage in them. The kidney damage may be the result of the vancomycin I was on for my infection last week. As a result of this my SCT is on hold for at least a month. This certainly is not turning out as I had invisoned. Dr.Goldman-I told you so. : )
I will be getting a liter of IV fluids everyday. I need to drink plenty of water and keep track of my intake and output. I go back tomorrow for repeat labs.

All set to go...

I had my appointment at Karmanos and everything went well. I was put on diflucan for my yeast infection. I will be going in Wed as planned for my melephlan infusion and admitted to the hospital on Friday. The only thing that could change that, is they drew a set of blood cultures to make sure my infection is completely gone. As long as they are negative I am all set to go. I discussed sucking on ice chips an hour before receiving the chemo to prevent mouth sores and they have no problem with me doing that. This something I learned from the myeloma list I am on. So I am hopeful that this works for me.

Another problem

I have developed a pretty nasty yeast infection in my abdominal folds and both thighs. I wondered why I was itching so bad. With a little detective work and a mirror I discovered why. I know this may be more information than you wanted to know. :) I had some extra nystatin powder on hand to start fighting it right away. I see Dr. Ayash tomorrow and I will find out if this delays my SCT in anyway and can get started on medication to knock it out. Luckily nothing has developed in my mouth as yet.
I finished my last vancomycin infusion today. Now back to just flushing my line every three days.
My Aunt Thelsa was moved to a rehab facility Friday in Farmington. She and my Uncle Bob had moved up to Gladwin several years ago and now with some health issues have decided to move back home. Bob & went to visit her today. When we walked in her room she was visiting with my mom and Sylvia. It is so nice being able to see her without driving 2 1/2 hours. While we were out we in case I do go into the hospital this week. Who knows I could end back in there tomorrow but I hope not.

I've still got two stuffed piggies

attached to the bottom of my legs. For some reason I can't seem to get rid the swelling I got when I was in the hospital receiving all that IV fluids. I am trying to drink lots of fluids so my kidneys don't shut down again.
I did my first Vancomycin IV infusion without supervision. The system is quite unique and easy to use.
All my family came over for dinner tonight. This will be the last time to be together before I go into the hospital next week. My appetiete still is poor due to slight nausea. I took an ativan 1/2 before dinner but it didn't help much. Mostly I am effected by meat, weird.
I am going to go sit down on my recliner and put my feet up.
The setting for comments some how get changed and I have reset it.

I'm Home.

I'm enjoying being home and sleeping in my own bed. Most of all I missed my recliner. I'm not used to sitting in a chair without having my feet elevated. With all the extra IV fluids I received my feet look like stuffed sausages. I'm on a diuretic and keeping my feet up so they are starting to go down some already. The home care nurse came here at 11:00 am and showed me how to hook up to my IV antibiotic and how to unhook it when finished. It is quite a unique system they use. The abx is in a balloon like membrane which is inside a plastic container that looks like a baby bottle. Once it is connected to my line and the clamp is released the balloon membrane starts pushing the fluid in. It takes about 2 1/2 hours to complete. I put the container in my fanny pack and I was on my way. I went to the pharmacy to pick up my medication and then out to lunch with my mom. We went to Hudson's (Marshal Fields : ) for a maurice salad. It was really delicious especially after not having a salad for over 2 weeks. My hair cut looks much better-Thank you Ellen!! My daugher-in-law Jen bought me several bandanas and baseball caps in assorted colors which I really like and I'm sure I will get plenty of use with.

I'm gong home

today as soon as I finish getting a potassium IV. I should leave here around 3:00 pm. I am going to Julie's and her mother-in-law Ellen is going to cut my hair very short. It is falling out in bigger chunks now. Jennifer bought me some cute scarfs and baseball caps to help fix me up. : ) I need to receive Vancomycin IV for 3 more days at home. St John Home Infusion will be out tomorrow to teach me how to infuse it.
Everything is on schedule for next week to receive my Melphalan on Wed. I should enter Karmanos Fri. to have my stem cells infused and will stay for 2-3 weeks.
My WBC is 14.7 so I am going to have a salad while I can. I really miss that more than anything else. Except for Bob of course!

Apheresis day is here!!

They came in today at 9:30 am and told me that everything looked good and we would procede with my stem cell collection. Because of my infection they will culture my stem cells and make sure they are infection free before deciding to use them. I am on the apheresis machine right now having the stem cells filtered from my blood. I started at 10:30 am. I don't feel anything but it sounds like a washing machine. I am lucky to have internet access. I've read all my emails, done my blog, Next I will watch a dvd or tv. Who could ask for more?
I was finiished at 3:30 pm and they were able to collect all my stem cells in one try. They collected 14 million cells. More good news, I get to go home tomorrow. I am one happy camper!

A feeling of peace

rushed over me during the night that I have made the right the choice in having this sct. I received a lovely note from Jenny which touched my heart and this feeling of peace came to me at 2 a.m. in the morning.
Morning labs wbc 8.4, plts 50, hbg 8.5. Today is possibly the day to harvest my stem cells.
Well it's not going to be today after all. Looks like I will be here a few more days

Things are looking up..

My labs are improving. My wbc is now 5.6, plts 39, hbg 8.4. My stemcells are all set to be harvested as soon as infection is cleared up. Hopefully tomorrow. Keep praying for me. : ) I found out there is a problem with the internet connection signal in my room . So I am now sitting in the hall outside of my room next to 4 fish aquarium tanks. It is nice and tranquil here.
Since I posted earlier today I have found out I can connect to the internet right outside my door on a computer desk they have there. I don't have to drag my chair so far. : )
I just discovered that my hair is starting to fall out. : ( It has been 11 days since I received my cytoxan. A word of caution to anyone receving their first chemo- drinking plenty of fluids is essential. I drank all the required fluids the day before and the day after and then I stopped counting and on top of that I felt some nausea. That is what put me in the hospital-dehydration, renal failure and sepsis. Everything is resolving good at this point.

I'm in heaven...

because I finally got internet access for my hospital stay. I just found out they have a guest computer with internet access in the hallway that I can use. I am still trying to figure out how to wirelessly connect my laptop in my room.

Today has been busy. I recieved 2 units of PRBC's. My hbg. was 7.3 I received platelets for plt count of 18. This afternoon Bob, Steve & Jen, Jack, Max, Julie & Andy, Aly, Danielle, & Dean all came to visit. I got some beautiful gifts and cards. Being a Grandma is wonderful! Here is a picture of everyone before they came to the hospital, except for Bob who took the picture.

Follow up on labs..............

Put me in the hospital !!! Came in for labs and they ending up admitting me. My temperature was over 101. Blood pressure was extremely low 79/32. WBC was still low 0.4 They put me on antibiotics and plan to keep me for a few days.

Lab results

I went to Karmanos at 8 a.m. this morning and had my labs drawn through my softcell catheter. It sure is nice not getting poked in my arms. The nurse changed my dressing to opsite to see if I can tolerate it better than the tegaderm. We had to wait for an hour to get my lab results. My wbc dropped to 0.1 so I still have to wear a mask. My platelets are now 28. I have to go back again tomorrow and if my platelets are 20 or below I will need a platelet transfusion. I am at risk for bleeding so I have to be careful not bump myself or fall.

A new beginning...
I am going to try and see if this works as a way of keeping everyone informed about my stem cell transplant. I am told I will have internet access when I enter the hospital. It will also give me a permament record for me to look back on in the future.

I had my cytoxan 1 week ago today. That went better than I expected. I felt a slight amount of nausea for 2 days. I only had one episode of vomiting phlegm, which went away immediately when I took my prn nausea med. Yesterday my wbc was 0.3 which is very low. I need to wear a mask if I go out in public. It feels odd going to the grocery store with a mask on but I am getting used to it. Just wait until I am bald. : )
I return to Karmanos tomorrow to have my labs redrawn and will let you know the results.
So far the only problem I have encountered is being sensitive to transparent dressing on my softcell catheter (see picture).

If you have any suggestions, feel free to let me know.