Linda's Lymphoma update 6-29-11

No luck this time. The pain came back Monday night, but was controllable with the pain meds. It got worse last night and I thought we would be making a hospital run, but we made it through the night.

Today by noon, the pain which started in her ribs and chest, moved to her low back and then finally to her right thigh (which always has been the worst). Despite pain pills and patch, she was miserable with the pain 7-8 on a scale of 10. So we decided to preempt and go to the hospital during the day instead of at night.

Good idea! Linda was so disappointed as she wanted to stay home, but by supper, the pain was back to a 10 despite the meds. She's in Room 3017 again, same as last week.

Hopefully this will be a 2-3 day stay and she will be home for some of the July 4th weekend. This roller coaster ride has been going on for almost 7 months now and we are all getting weary. While she is in the hospital getting cared for, the family can catch our breaths and catch up on sleep for the next go round.

Keep praying, it is working. She is much better now than she has been for 3 months. Thanks.

Linda's Lymphoma update 6-26-11

Back home again! Yea

After 12 units of platelets and 3 units of blood, Linda came home after lunch today.

Her WBC is finally starting to rise (1300) today from 500 yesterday. Thus a few more Neupogen shots and hopefully she will be to 3500 - the number where she is no longer susceptible to infections.

She still has no pain. Her appetite has returned, even to eating meat (ribs for supper). As you know, she loves to cook and eat. So when she won't eat, we know she is sick. This sudden urge to eat everything is a great sign and cause for hope. She has to eat well to get her strength back, resume walking etc.

Likely, her next chemo will be next week - July 5th for 5 days.

This is a one day at a time disease, but we hope she will be home for the long weekend (July 4th).

Thanks for all the help, food, cards, comments, and prayers.

Linda's Lymphoma update 6-24-11

I'm back in the saddle hospital again!

Yes, that's right! After the good news yesterday on the blog, Linda awoke choking early this morning (2:45 am) on a lot of phlegm.

When we turned on the light, it was blood. She had a severe nosebleed that we couldn't control with pressure, so I called the oncologist. Her platelets were 38,000 on Monday and she was also on Coumadin for a blood clot in her right leg. So she likely had no clotting ability at all.

The doctor told us her platelets were likely extremely low. For non-medical people, the normal platelets level is 140,000 - 400,000. These little guys in the blood help us clot wounds, cuts etc. They are made in the bone marrow and are affected by the chemo. Usually people are OK until they get below 10-15,000. After the last chemo when she was so ill and in hospital for 11 days, the count was 5,000 but she didn't bleed anywhere.

So he sent us straight to the hospital and she was admitted by 4:00 am. They started platelet transfusions and by 8:00 am, the bleeding had ceased. Her count was 4,000 - lowest I have ever seen.

She is doing OK now, and will be home tomorrow. She still feels well and is pain free, so this is just another speed bump on the road of life.

This chemo is crazy stuff. The number of different complications that can crop up is bewildering.

Linda's Lymphoma update 6-23-11

Wow - what a week!

Linda continues to improve. She is up more, eating better and feeling stronger. Today she got dressed in street clothes for the first time in 4-6 weeks (I can't remember it has been so long). She had tacos for lunch and a hot dog for dinner (first meat she has eaten in weeks). She is getting around on the walker and is going to the bathroom rather than using the bedside commode.

She finishes her 10th Neupogen shot on Saturday. She is having some back pain and pain in her hip, but I think it is due to her activity level rather than the shots or lymphoma. It doesn't require any pain pills. In any event, if she gets through the weekend without a recurrence of the severe pain, it will be a milestone.

Her WBC is very low (500) on Monday's blood work, so we have to protect her from germs. The blood was drawn again today, and hopefully it will start coming back up.

Dr. Quraishi is very pleased with her progress on the last bone marrow (10 days ago). She appears to be responding well to the new chemo.

Thanks again for prayers, cards, comments etc etc.

Linda's Lymphoma update 6-19-11

Linda's home again. She came home Thursday evening after completeing chemo and getting some PT to help her to walk with a walker.

So far, she isn't having any pain and is just using the patch. Because of that, she is much more alert, and able to eat some and drink fluids to prevent the dehydration.

She has had some vomiting, which is a late side effect of the cisplatin drug. Thursday night, she vomited twice despite medication and went in for IV fluids Friday morning (outpatient). The vomiting seems to have passed now (fingers crossed) as the last episode was Saturday afternoon.

She is getting the Neupogen shots (4 already). Hopefully, she won't get the pain back next weeknd which is the usual schedule she seemed to be on.

She is getting around the house with the walker better, but still has severe fatigue and she tires easily. She has been out on the patio in the evening.

Overall, this is the best she has been in well over 2 months. Maybe things are looking up. I hope her strength continues to improve.

Linda's Lymphoma update 6-15-11

Linda finished the 5th day of the current chemo course tonight.

Finally, a cause was found for the pain in her right thigh. There is a large deposit of lymphoma along the femur. This will be dealt with by the chemo or other ways at a later date.

She still has trouble standing on that leg, but hopefully with PT she'll be home tormorrow or Friday.

Her appetite is fair, and she is still drowsy at times from the meds given along with the chemo (benadryl, reglan IV). This evening, she wanted fried shrimp and cole slaw, so I went to Red Lobster and bought her a dinner. She ate about 1/3 of it, but this is the best in several days.

Anyway, she looks good when not drowsy from the benadryl, phenergan and pain meds.

Looking forward to getting her home for the weekend and feeding her whatever she desires.

Thanks again for cards, comments, prayers, meals, and help at home.

Linda's Lymphoma update 6-12-11

How much better pain relief is!

Linda is doing better in the hospital as the controlled IV doses can give her almost 100% pain relief. With the pain relief, she can eat her meals as well. She had a whole sandwich and apple sauce tonight for dinner when I was with her.

She is on her 2nd day of this chemo round.

The pain in her left thigh is puzzling. It seems to be muscular, but is so severe, that she cannot stand on it. I think she may have pulled or torn a muscle last week, when her platelets were so low, and may have a big bruise in the muscle causing the pain. An xray was normal. Today she had an ultrasound of the thigh, but no report yet. If still no info, then maybe she'll need and MRI.

In any event, she is a real trooper. I don't know how she keeps her optimism up when she has had so much pain for 8 months.

Keep praying. It works. Thanks.

Linda's Lymphoma update 6-10-11

Three steps forward and 2.9 steps back...

Linda had a wonderful day at home on Thursday. She was getting stronger, eating rather well and basically in minimal pain.

Today at noon, her pain in the right leg and abdomen returned with a vengeance and by 10:00pm was back to a 10 on a 1-10 scale despite maximum doses of narcotics.

We had to call the docotor and get her directly admitted again for pain relief. She's in room 3037 at Bayshore Medical Center.

She is so disappointed not to be home for the weekend as she was looking forward to it.

All is not a waste of time however, as her blood work on Thursday showed she was able to have the next course of chemo (5 days in hospital), and that was scheduled for Monday. So we will save some time and begin it this weekend, so she'll be home hopefully by next weekend.

I was planning to have her write this entry on her blog...but not to be.

Thanks Jill for your help with Linda at home on Wednesday and Thursday.

Thanks again to all for cards, comments and especially prayers.

Linda's Lymphoma update 6-7-11

HOME AT LAST!

We brought Linda home from Bayshore Medical Center at supper tonight. She ate a ham sandwich for dinner, the first solid food in 2 weeks. She can walk 20-30 feet with a walker and help.

Kudos to Bayshore Medical Center and her physicians for the excellent care. We are all deeply appreciative of the love and caring showed to her during the 12 day admission.

She is still very weak, but the home environment and better food, now that she can eat a little, will help her to get her strength back quickly.

She will have to go back in hospital next week for the 2nd of 3, 5 day chemo course. So the respite at home is a blessing.

We has some very good news prior to discharge. A bone marrow was done 3 weeks ago prior to the last chemo and the report finally came back. The bone marrow was free of cancer and even the flow cytometry (a special test to identify cell types) was normal. No cancer cells were seen. This is fantastic as she has to have a clean bone marrow prior to getting the transplant!

Thanks to Jill Cooper and Jan Metcalf for volunteering to come to the house and help Linda during the next few days while I'm at work. You gals are GREAT!

Also, here is a better link to take you to the latest post on the blog, rather than a specific date....

http://lindaslymphoma.blogspot.com/

We are 7 months into this trip and have another 2 months or so to complete the bone marrow transplant. Linda is a real trooper. We are all still positive about achieving a cure.

Thank for all the cards, blessings, prayers and comments. It helps us all to get through this.

Linda's Lymphoma update 6-5-11

Linda had a good day today (best since she went in 10 days ago). She was able to sit up for an hour as we played Scrabble on my iPad.

The WBC is normal, but the platelets are still very low (20,000) vs a normal of 150,000 - 400,000. They should recover as the bone marrow recovers. However, the next chemo course will have to be delayed until the platelets are normal (3-5 days).

She is eating some - fruit, applesauce, yogurt etc but her appetitie is still poor.

She may get home on Tuesday while she waits for the platelets to recover, but this will be a nursing challenge for us.

Thanks for the comments. Obviously everyone was blog challenged!

Keep up the prayers. IT HELPS immensely.

Linda's Lymphoma update - how to post a comment!

Several people have told me they can't figure out how to comment, so I checked today and figured it out, as I don't have to comment myself.

1. Click on 'comments' in blue under the text. This will open the comment box.
2. Write comment in box and sign your name so she will know who sent it.
3. There is a 'comment as' pop down list - just use 'anonymous', as you have already signed the comment in the box.
4. This is important part. Click 'Preview'. It will show the comment, and a word verification. Type the large blue italicized letters in the box provided. Then click 'Post Comment'

Good luck. It does work.

Linda's Lymphoma update 6-3-11

Linda continues to make remarkable progress. Thanks for all the prayers. They are working!

She went out to the regular floor yesterday (Rm 3039, Bayshore Medical center, Pasadena TX). Finally, the WBC is back to normal with the Neupogen shots. She started to eat a soft diet today at supper.

She is still extremely weak and is getting physio - moving legs in bed, sitting in chair etc.

With any luck, she can come home Monday for a couple of days before going back in the hospital for the next 5 day chemo course on Wednesday 8th.

She has her work cut out to get her strength back, start walking etc. This can continue through the chemo next week.

So far, she hasn't had the severe pain from the Neupogen this time around. Thanks be to God.

Her attitude is very positive and she will see this treatment through, including the transplant in late July.

As a kid in the 50's and 60's, I remember Walt Disney Presents each week. There were 4 'lands' (Fantasyland, Tomorrowland, Adventureland and Frontierland). This wild ride our family is going through I think should be called Lymphomaland. It is wilder and scarier than anything Disney could conjure up. And the brushes with death are very real.

Linda's Lymphoma update 6-1-11

Wow - prayers answered! Linda is doing so much better these last 2 days.

Finally the WBC (white cell count) has come up. Dr. Quraishi (oncologist) said that the nadir for the drugs was 6-8 days post chemo. Monday was the 8th day. After being stuck at 100-200 for 6 days, the WBC was 600 today. When it gets to 1500, she can be out of ICU as the kidney function, BP etc are all OK. The stomach tube through her nose was removed today and she is taking sips of fluids again.

She is still getting IV feedings and those are making her stronger. She will needs plenty of physio to get her strength back and walking aagin, but her attitude is great!

We hope that she will get home for a day or two before the next 5 day course of chemo starts Tuesday next week.

Thanks for the prayers and cards. If so inclined, please post a comment that I can read to her, as she can't have cards, flowers etc in ICU.

Thanks also for all those who give blood, as Linda has used probably 20-25 units of blood and platelets so far in her illness.