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Back in the hospital

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Man, we just can't catch a break here.

David started having a really bad pain in his butt cheek. Weird, huh? The nurse (yes, you guessed it--the non-dog one) wanted me to pick up a prescription for a topical hemorrhoid cream but I didn't think it was hemorrhoids and neither did David. I was pretty insistent on having David seen, and I ended up talking her into saying I could take him to ER. Well, once again Mommy knows best. David has cellulitis. Not something to trifle with. His whole left cheek is flame red, swollen, and hot to the touch. They admitted him, started him on IV antibiotics, and did a CAT to make sure he doesn't have an abscess. If he has an abscess, we could have a problem. If it's cellulitis alone, they think they can get rid of it with a ten day course of antibiotics. They think he can go home (with me) if he doesn't have an abscess. He will take an antibiotic for ten days and then do chemo. If he has an abscess, they may need to do surgery and then he will need to put chemo off for longer. I am staying with him in the hospital. We should get the results from the CAT tomorrow am.

BTW, David wants to do the BBBD again. His courage and strength humble, awe, and amaze me. I quail at the thought of another round of the BBBD, and I'm not the one that is going to have to go through it.

Anyway, David is in a lot of pain. On top of the cellulitis, he has a really bad, nonstop headache. I'm so glad that he had that great MRI, but what we really need is for David to be pain free. Or at least only a little pain, enough to function. He's been in bed, in pain, since those seizures on Monday.

David wants to come home with me because he doesn't think he should be alone when he's in this much pain. I'm glad he will be with me but I'm so sad that he has pain that's bad enough to make him leave his apartment.

Still fighting, still trusting in God, still holding on to hope....it's hard, but we are doing it...

Love and blessings,
Cindy

Raani01
Posts: 68
Joined: Mar 2011

Cindy,
Idon't know how to comfort you. I pray David to feel better...Raani

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

We got the results from the CAT this morning. At first they said that they didn't see any pockets of fluid or any abscesses. Then they rechecked the CAT and came back and said that there is one suspicious area. But worse than that, they see two blood clots in his groin. They told us that they could give him a blood thinner...warfarin...but that could cause him to hemorrhage because of his low platelet levels. But if he doesn't take blood thinners, he could form more blood clots. The decision was ours.

I asked them to call the BBBD team. They said...start blood thinners NOW! No doubt in their minds. But not warfarin. They are having us use a newer one called enoxaparin. Unfortunately it's an injection given 2x a day, for 3 months. The BBBD team says that David will still get chemo. I didn't talk to them in person...the doctor treating David for the cellulitis/clots talked to them over the phone. So I don't know if David will do more chemo before 3 months and I don't know if it will still be the BBBD or just IV chemo. I'll ask them as soon as I get a chance.

David is still in a lot of pain. His headache is a 9 and his butt is an 11. Nothing is helping, not even oxycodone with dilaudid and tylenol. They are trying a patch and also topical lidocaine cream.

David is incredibly brave. He says he's ready to learn how to give himself shots. He says this is a stumbling block, nothing more. The nurses say that he is not in imminent danger and that this is treatable---it's a bump in the road.. But I am tired, overloaded, and very shaken. My knees were shaking as we discussed options. I tried hard but I ended up crying a little.

Still trusting in God, still holding on to hope.

Love and blessings,
Cindy
PS Just heard that our insurance company may not cover that blood thinner that the BBBD team wants to use. It's really expensive.

sadinholland
Posts: 226
Joined: Apr 2011

It seems like it it's been one thing after another for David. My heart goes out to him. You know when the devil sees warriors like you and David he tries everything to make you lose faith. It's in God's hands! No matter how bad it may seem you know He is in complete control of the situation. Hang strong Cindy! God has a plan for us all. Look what you and David have endured already! You've both made it through so much that you didn't think you could. It's going to be alright. I know it"s rough right now. You and your family and especially David are going through a whole lot right now. But know that Our God is right there with you guiding you every step of the way, holding you and comforting you and David. I pray for continued guidance and peace for each and every member of your family. I pray that the holy spirit touches you in a way to let you and David know that it's going to be alright. I pray for understanding and I pray for David to be pain free. That he can rest peaceful tonight. I pray that you continue your trust and belief in the Lord and know that EVERYTHING is going to be alright in Jesus name. Amen.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your prayer! It's been such a crazy emotional roller coaster ride for us.

They gave David a pain patch and a topical cream for the pain and it helped. His pain levels are better....about fives. He says that it's a lot better. He is still having trouble urinating but hopefully he can cut down on the pain medicines and that will help.

The BBBD team says that they will treat him on schedule as soon as he heals from the cellulitis. They will stop the blood thinners while they do the treatment, then start him up again as soon as they are done. I have some fears about that. I hope it's safe. They go up through his groin and that's where the clots are located. I am going to need to have a lot of questions answered before I feel okay with another BBBD treatment.

One side note...David seems even better mentally than before he had those seizures. I thought he'd reached a plateau in his recovery....that he'd recovered as much as he was going to, but I can see that he is still getting better. His answers are faster, he is more alert and focused, his eyes are clearer, his speech is better....I am really surprised. And very grateful! My sister and brother in law and daughter noticed too, without my even saying anything to them. I'm very grateful for any positives that we can see....

If he hadn't developed cellulitis, we never would have known about the blood clots..unless they broke off and caused big-time trouble. I mentioned that to David and he said he supposed he should be grateful for that but he didn't feel very grateful. Can't blame him....

We are going to head back to his apartment tonight...it's only about 5 minutes from OHSU. Tomorrow we will pack up some of his stuff and head to my house in Salem and David will stay with us for a little bit. Back to taking it one day at a time....

Thank you again!
Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

I am so sorry to learn of this "bump in the road." While I am so sorry that David has to deal with the painful cellulitis, I am thankful that there is one positive: finding the blood clots.

You and David have been through so much. I pray that David mends quickly and that he will sail through the BBBD, the result being that the next MRI will show even more dramtatic improvement.

Love and prayers, Connie

PS: Do they know what caused the cellulitis?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Connsteele.

They don't know what caused the cellulitis. They said that the organisms that can cause it are living on our skin and in our environment and they get into our bodies through any small break in the skin, even invisible ones. They don't know if it was caused by an abscess that is possibly forming, or if an abscess is possibly forming because he has cellulitis. They mentioned MRSA which made my blood run cold, but they said it would be okay because they are treating him with a wide-range antibiotic that would address MRSA as well.

We are headed home shortly. I am glad that David feels good enough to head home but I am scared to leave the security of the hospital. They told us to watch out for bruising with unreasonable pain...that would be a sign of hemorrhage. I hope that I don't miss anything. David has lots and lots and lots of bruises everywhere because his platelets are low, but none of them have more pain than usual so the nurses and doctors think he's okay. What a huge scary responsibility for me. I will run him in to the ER if I have even a flicker of concern about any bruise...or anything for that matter.

He's already had some wicked bloody noses and they told us to prepare for more, because the blood thinner will cause more. The bloody noses aren't really serious unless they last more than a half an hour but it's upsetting to see so much blood pour out of his nostrils. And it's really hard for me to see him give himself a shot in the stomach. I'd better get used to it because he's going to be doing that twice a day for 3 months.

Hanging in there....
Love and blessings,
Cindy

sadinholland
Posts: 226
Joined: Apr 2011

I am sorry for the repeats on my post. I guess I am hitting the button too many times!

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Well, I am shocked. But very, very happy. David needs to have two shots a day for 3 months of that blood thinner. That's approx. 180 shots. I picked up 60 hypos today...one month's worth. The cost? $3,000!!!! What did I pay? $3.30. The insurance paid the rest. It's like a miracle.....

I can't believe how much it cost...what do people do if they don't have any insurance? This blood thinner is called enoxaparin. It's made from "porcine intestinal mucosa"....pig guts. Why is it so expensive? It's crazy.....

Love and blessings,
Cindy

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Wow does this bring back memories to me. How low are his platlets ? My sister had the same problem. She had to go on a heprin drip with really low platlets( I think like 8). She had to start the drip as we waited for the platlets to come from San francisco about an hour away. ( It took hours)
We went home on the injections, but I gave them to her. Being a nurse I do it all the time, but was harder giving it to my sister. When I teach patients to do it I tell them just do it like your playing darts. count 1,2,3 go. Its easier that way. Because thinking about poking your self it hard.
Take care, Im thinking of you and David is in my prayers. You are a amazing woman...

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Hi Cindy,

My sister and I came back late last night from our wonderful trip; I will talk about it later. I want to cheer you up first.

I saw David's MRI! Wow! The tumor seems to have melted away! The protocol worked! I am so happy! Like you mentioned, this is also a tumor that did not have the genetic deletions to make sensitive to chemo... but the chemo still worked.

I know that you are worried about the blood clots, the seizures, the cellulitis but the tumor had a drastic response. Take heart! You can handle anything as long as the tumor is shrinking.

Seizures are terrible but not life threatening (as long as the airway is patent). My sister describes a seizure experience twice in her blog. It is terrifying for her to loose control, to loose consciousness. That is why when she used to feel lightheaded (almost like an aura) she would take a valium (a benzodiazepine) to prevent a seizure. She admitted that she might take the benzodiazepine more often than necessary at first because she was terrified of another seizure. She rarely used the valium now, more like once a week. Her NO also when up on her keppra and she is taking 4000mg a day.(divided in 2 doses).

As far as the blood clots: they are caused by cancer, trauma (like the puncture site in his femoral), stasis (lack of movement). The heparin derivative should help and I am guessing they are monitoring his platelets and will transfuse him with platelets if necessary. As for the cellulitis, well I am grateful we have antibiotics. And even if it is MRSA, ( I see it everyday) it is curable.

The tumor is shrinking. I was so happy when I read your message that I danced in my living room.

With love,

Julia

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia:

I love how helpful you are to all of us on this website. I was wondering if I can have your sister's blog address so I can read it? Sarah is doing ok. She just finished her five days of Temodar last week and she is still tired. Poor girl. She is doing so good pushing through all of this though. We are trying to set up an appoinment in March for MD Anderson, 2nd opinion. We want to check on Sarah's treatment plan and have a back up in the event of a reoccurrence. Right now her MRI's are stable. We are very thankful for that. We continue to have faith and try and always be hopeful. I send God's blessings to you and your sister.

Edna

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Thank you for the kind comments. You can read my sister's blog at:

http://one-eighty-kat.blogspot.com/

I am sure you will see a lot of your daughter and yourself in it. My sister was almost done writing her first novel (on the 5th revision); and so her skills as a writer came in handy when she had to describe what happened to us.

Let me know if you find any alternative treatment at MD anderson.

Love,

Julia

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I smiled when I read your message and it made me happy to think about your dancing in your living room. I need to remember the happiness David's MRI gave us because right now we are really going through it again. You can see what we have been going through when you read my new thread that I posted today. However, I do feel better today because I believe that David is recovering. We still have the potential for a lot more bumps (mountains) in our road, but we are definitely going in the right direction.

Thank you for sharing our joy about the MRI. The understanding and empathy and support from you and everyone on this site is priceless to me.

Love and blessings, always,
Cindy

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