So many changes in so little time........ The additional surgery was not required ~ the Drs. retested the port and did retrieve some fluid, so they injected contrast into the reservoir and did another CT scan. The die actually did flow through her spinal fluid correctly, so they determined that another invasive surgery was not necessary. Hurray!! She was released yesterday, with instructions, instructions, instructions! Dee is happy to be home and relatively pain free. She watched T.V. for the first time in months and is sitting in a chair on a regular basis. Her mental status is fabulous and she is controlling any pain with Tylenol every 4 hours. AMAZING!! She still has a long road to travel, she realizes this, but her attitude is great. The confusion still occurs occasionally, but is managed. This will clear as the cancer in her skull recedes. In the meantime, the anxiety is not present and she feels relaxed and joyful that she will be sharing Thanksgiving with her family. Thanks for all of the prayers to get her there!! We have too many blessings to count this Thanksgiving, including each of you. We wish you all a very Happy Thanksgiving and pray that you and your families will be blessed in equal measure!
With all our love ~ and hugs,
The Marcottes
November 23, 2009 ~ Update
Another big day........ Dee is going back into surgery today so that the Nuerosurgeons can figure out what the problem is with the Omaya Resevoir to place the Chemo into her head. The procedure is called a "Revision". We never look forward to another procedure but, it has to be done and she'll finally get some much needed rest.
Dee has been doing extremely well in spite of the fact that the past two nights have been virtually sleepless. The night nurses have given her an anti-anxiety medication that has had the reverse effect. This causes her to become very, very anxious ~ cruising around the hallways at all hours of the night to relieve the tension and experiencing phantom pain. It is beyond frustrating that they do not listen to the family members that have spent the most over-night time with her and know how she will react, especially when it is an "as needed" medication, and she didn't need it. They are most likely trying to make her comfortable in evey way possible so it's difficult to be upset for that reason. Sorry not trying to be negative, just needed to vent that litlle frustration.. She is doing better than we are today with no sleep. Guess it's the daytime naps that help her through. Maybe they can re-route the anti-anxiety medication to us : )
In any event, we will post an update after the surgery and let you all know how she's doing. It may be difficult this week to keep up the Blog as frequently with all of the Holiday activity, but we will make every effort to keep you in the know.
We ask you to double the prayers up today, with the surgery pending. Much love to you all and God Bless!
Dee has been doing extremely well in spite of the fact that the past two nights have been virtually sleepless. The night nurses have given her an anti-anxiety medication that has had the reverse effect. This causes her to become very, very anxious ~ cruising around the hallways at all hours of the night to relieve the tension and experiencing phantom pain. It is beyond frustrating that they do not listen to the family members that have spent the most over-night time with her and know how she will react, especially when it is an "as needed" medication, and she didn't need it. They are most likely trying to make her comfortable in evey way possible so it's difficult to be upset for that reason. Sorry not trying to be negative, just needed to vent that litlle frustration.. She is doing better than we are today with no sleep. Guess it's the daytime naps that help her through. Maybe they can re-route the anti-anxiety medication to us : )
In any event, we will post an update after the surgery and let you all know how she's doing. It may be difficult this week to keep up the Blog as frequently with all of the Holiday activity, but we will make every effort to keep you in the know.
We ask you to double the prayers up today, with the surgery pending. Much love to you all and God Bless!
November 22, 2009 - Post Chemo
Day two...... May we just say that Dee is amazing? The first day after Chemo, she was not experiencing any of the classic maladies everyone imagines......(They have drugs for those now; and thank the Lord ~ she can actually take them without a reaction!) She had some severe body aches, similar to those from a bad flu and, some anxiety (not severe) and that's about all relating to the Chemo (not the amazing part). She's still sick from the Lymphoma, but we know that eventually those symptoms will dissipate as a result of her treatments. Now, the amazing part.......... she has reached down deep and found the strength to walk, walk, walk, walk and walk some more (using a walker). Her Oncologist told her that she must be completely mobile before she can get released. She is getting out of the bed by herself and also, trying to really focus (difficult for her due to the Lymphoma located in the skull) on getting well. Today was a more restful, peaceful day, with less aches and pains. She is eating some, which can be difficult after Chemo, and actually walking better than she has in a long time. We are extremely proud of how far she's come in this short time and know that she hasn't done it alone. All of the prayers sent on her behalf have lifted her up and propelled her spirit forward. "Thank-You" in this case is inadequate, but it's all we've got at the moment. We figure that she has said enough prayers for everyone else and had all of us to do the same, that it's a-okay if we ask you to Pray for her. Please know that each and every one of us so appreciates those prayers. She'll need them to continue in the days ahead, as there will be more than a few rough patches. We have faith, however, that her spirit will continue to be sustained through your loving kindness.
P.S. Although we are sure this blog is being read by quite a few of you, will you please try to forward it to anyone that you think may read it and share it with those don't have computer access? Thank you.
P.S. Although we are sure this blog is being read by quite a few of you, will you please try to forward it to anyone that you think may read it and share it with those don't have computer access? Thank you.
November 20, 2009 ~ Chemo Day 2
We believe that it is time to start a Post with a bit of positive news. After 8 days of lying in her hospital bed and becoming pretty weak, Dee took a cruise around the hospital corridors ~ twice. The second was 2 laps at a record speed! (That's no kidding we almost couldn't believe what we were seeing.) Well needed physical activity that seemed to help keep her calm during the absolute craziness of scheduling in the 3 large proceedures that she was to endure. A side note: Dee has retained her sense of humor through all she has endured. She teases the Drs., Nurses and Hospital staff and has tried to adopt at least one Certified Nurses Aide who stays in her room at night to assist one of her family members with her care.
As we mentioned in an earlier Post, nothing about Dee's case has been "typical". Today was no exception. The Drs. went to administer the Chemo for her brain into the Omaya Resevoir but must take a spinal fluid sample from it first. This verifies that the placement of the Resevoir is in fact correct. That's right no fluid ~ supposedly this happens in a small number of cases. We have come to the conclusion if things proceeded as expected we could only assume that they were talking to the wrong patient's family. To make a long story short, after an exhausting day of "wait and see" and "probably on Monday", we received news at about seven this evening that they would take her down to radiology and do a spinal puncture and administer the Chemo for her brain through that. Which did occur ~ She was a champ. Relatively calm and very clear in spite of her already hectic day.
Upon return to her room, the third and final component of her IV Chemo is now being administered. She is restless and more than a little tired at what is now 12:05 a.m., on November 21st. We are thankful that she is remaining calm and pray that it does not lead to a full blown anxiety attack.
Did we forget to mention that in the midst of the chaos she also had the spinal MRI? Dee was restless and squirmed a bit, but the Oncologist believes that he will get what he wants regardless. We are praying that tomorrow is "Test and Procedure Free Day". It may be the first day that she is free from the anxiety of being held in suspension and can finally start the slow and steady forward momentum toward recovery.
By the way, we forgot to pass on some very important information in the Post yesterday, or rather 2 days ago now. Dee asked that we say "Thank you so very, very much to everyone for the wonderful cards, letters, emails, posted comments and most especially your prayers. It means so much." Her family says "Ditto" The amount of love and support that we've received is truly a priceless gift. We love you all. Good night and God Bless.
As we mentioned in an earlier Post, nothing about Dee's case has been "typical". Today was no exception. The Drs. went to administer the Chemo for her brain into the Omaya Resevoir but must take a spinal fluid sample from it first. This verifies that the placement of the Resevoir is in fact correct. That's right no fluid ~ supposedly this happens in a small number of cases. We have come to the conclusion if things proceeded as expected we could only assume that they were talking to the wrong patient's family. To make a long story short, after an exhausting day of "wait and see" and "probably on Monday", we received news at about seven this evening that they would take her down to radiology and do a spinal puncture and administer the Chemo for her brain through that. Which did occur ~ She was a champ. Relatively calm and very clear in spite of her already hectic day.
Upon return to her room, the third and final component of her IV Chemo is now being administered. She is restless and more than a little tired at what is now 12:05 a.m., on November 21st. We are thankful that she is remaining calm and pray that it does not lead to a full blown anxiety attack.
Did we forget to mention that in the midst of the chaos she also had the spinal MRI? Dee was restless and squirmed a bit, but the Oncologist believes that he will get what he wants regardless. We are praying that tomorrow is "Test and Procedure Free Day". It may be the first day that she is free from the anxiety of being held in suspension and can finally start the slow and steady forward momentum toward recovery.
By the way, we forgot to pass on some very important information in the Post yesterday, or rather 2 days ago now. Dee asked that we say "Thank you so very, very much to everyone for the wonderful cards, letters, emails, posted comments and most especially your prayers. It means so much." Her family says "Ditto" The amount of love and support that we've received is truly a priceless gift. We love you all. Good night and God Bless.
November 19, 2009 - Chemo Begins
The surgery to place the Omaya Reservoir in Dee's head went very well. A CT scan was conducted after to determine that it had been placed correctly so that it could do its job. She came out of it clear and in minimal pain. In fact, she was a chatty Cathy ~ most likely relief having the whole process over. She has a 3 x 4 inch patch of hair missing from the front right of her head right at the hairline. In place of the hair lies a 1 1/2 x3 inch "goose-egg". Eventually, the swelling will go down and a slight bump will remain. The first round of Chemo to her Brain begins tomorrow. That consists of one drug and will be administered every two weeks. This will be monitored because, at some point Radiation Therapy will most like be administered to insure that the denser bone is treated, as the Chemo may not get it. The Chemo she will receive intravenously has five parts. The steroid she's been receiving is one of those parts. A second component of the Chemo began this evening and it is the antibody portion of the treatment. The next 3 components will be delivered together. They have decided, since she's already in the hospital, to administer the first round in this fashion to watch her reactions and monitor each step. Not only to reduce the shock to her body, but her allergic reactions and extra-sensitivity to drugs warranted this caution. She will receive this Chemo once every 21 days and will follow up with 3 days of Steroids. The Chemo that's being delivered this evening triggered a very difficult anxiety attack and panic. We have not been given the summation, as the MRI of her spine was not conducted. The results of this are the last puzzle piece needed to complete that. The MRI takes place at 10:45 a.m. tomorrow. We pray that those results are clear and do not add another level of complication. Love and Thanks.
November 18, 2009 - Status Update
I am unsure where to start this update. So many things have occurred, circumstances changed and tests taken that it would be literally impossible to include it all in this Post. Let's say, in a nutshell, the past week has been an extremely grueling one for all of us, and especially so for Dee and Bernie. The situation concerning the neurology is extremely complicated and has just been worked out following the last MRI and consultation with a vast sea of doctors. We have worked with, or are currently working with, the following teams of doctors: Internal Medicine; Hematology/Oncology; Bone Marrow Transplant Team; Radiation Oncology; Psychology; Infectious Disease; Occupational Therapy. All of these professionals have been working together to determine exactly what is happening with Dee. Her condition is very unique and consequently requires much more testing and thought than a typical case of Large Cell Type B Lymphoma. Initially, the thought was that the neurology indicated an infection of some type, such as Spinal Meningitis. This was ruled out by the last MRI which instead pointed to the Lymphoma. It is occurring in the bone in her skull (not brain) and cheekbone. It presses on the Cranial nerves controlling facial functions,; causing the droop, slowed speech, etc. The other Lymphomas are few and are located in the neck, chest and arm regions. This is typically where they are found, the head and brain area is not.
No final treatment plan, other than Chemotherapy, has been settled. They are doing a final MRI tomorrow and team consultation. Following this, they will determine an exact plan and what team will engineer the train concerning the plan. So far, the prognosis is that it is all treatable and the cancer can be killed leading to a remission ~ very good news. The path to that place however; will be long and hard. They have started the Steroid process necessary as a part of the Chemo. As I write this, Dee is in surgery to have a reservoir inserted into her brain, so that Chemo can be directly inserted into it. The reason for this is a barrier that prevents any Chemo given intravenously to enter into the brain region. This reservoir provides a much easier way for my Mom to receive Chemo there, as well as give them spinal fluid samples. The alternative is lumbar picks, which are painful and will develop scar tissue, making it more and more difficult to perform and painful over time. The second port for Chemo will be put into her chest. Depending on the Neurosurgeon and MRI, Chemo will begin sometime in the next two to three days. In the meantime, a variety of conditions ~ including the Lymphoma ~ are sometimes causing her to hallucinate, become incoherent and delusional. This is the most heartbreaking condition to deal with. We are assured that the Steroids and the Chemo will dramatically reduce this and have already seen small results with the Steroids alone. We are taking turns manning her hospital room, and will continue to do so until this condition dissipates. The staff is wonderful and very helpful, but in no way can take care of all of Dee's current requirements.
We are sorry that it has taken so long to post an update. We felt it was better to wait until a clearer picture formed. Once again, we ask that you continue praying. We so appreciate them and the loving concern that you share for Dee. God Bless You
No final treatment plan, other than Chemotherapy, has been settled. They are doing a final MRI tomorrow and team consultation. Following this, they will determine an exact plan and what team will engineer the train concerning the plan. So far, the prognosis is that it is all treatable and the cancer can be killed leading to a remission ~ very good news. The path to that place however; will be long and hard. They have started the Steroid process necessary as a part of the Chemo. As I write this, Dee is in surgery to have a reservoir inserted into her brain, so that Chemo can be directly inserted into it. The reason for this is a barrier that prevents any Chemo given intravenously to enter into the brain region. This reservoir provides a much easier way for my Mom to receive Chemo there, as well as give them spinal fluid samples. The alternative is lumbar picks, which are painful and will develop scar tissue, making it more and more difficult to perform and painful over time. The second port for Chemo will be put into her chest. Depending on the Neurosurgeon and MRI, Chemo will begin sometime in the next two to three days. In the meantime, a variety of conditions ~ including the Lymphoma ~ are sometimes causing her to hallucinate, become incoherent and delusional. This is the most heartbreaking condition to deal with. We are assured that the Steroids and the Chemo will dramatically reduce this and have already seen small results with the Steroids alone. We are taking turns manning her hospital room, and will continue to do so until this condition dissipates. The staff is wonderful and very helpful, but in no way can take care of all of Dee's current requirements.
We are sorry that it has taken so long to post an update. We felt it was better to wait until a clearer picture formed. Once again, we ask that you continue praying. We so appreciate them and the loving concern that you share for Dee. God Bless You
November 13, 2009 - Readmitted to Hospital
Dee was readmitted to Thornton Hospital early this morning. She has been exhibiting Nuerological symptoms and was not coherent. They have run another CT Scan and will be running an MRI this morning to determine the cause of the current problem. She was scheduled to meet with the Oncologist today to go over the previous test results and discuss the treatment plan. We are praying that the cancer is not a
secondary situation to the nuerological condition she is currently facing. Please pray for Dee and for Bernie
as well. He has been at her side constantly. Thank you and God Bless.
secondary situation to the nuerological condition she is currently facing. Please pray for Dee and for Bernie
as well. He has been at her side constantly. Thank you and God Bless.
November 10, 2009 - Bone Marrow Testing
Dee's Bone Marrow testing was done today. Thankfully, she was asleep and did not experience much pain as a result of the test. All of the tests have now been completed and we anxiously await the meeting with the oncologist to review all of the test results and receive the diagnosis and treatment plan. It has been extremely difficult for Dee and for her family, not knowing the extent of the cancer, waiting for this appointment. We would like to Thank everyone from the bottom of our hearts for your constant prayer and words of support. Your love and kindness can never be repaid. We ask for your continued prayer that the prognosis is positive and that the treatment is successful.
November 6, 2009 - Dee's & Bernie's Email Address
If you'd like to send a personal message please use Dee's new email address: brrdeemarcotte@aol.com.
November 2, 2009 ~ Discharged
Dee was discharged from the hospital this evening. She's feeling better now that the infection is under control and her sodium and calcium levels have balanced out. The power of prayer!! God Bless each and every one of you for sending yours our way.
October 31, 2009 - A Setback
Dee was admitted to the hospital after spending 11 1/2 hours in the Emergency Room at Thornton Hospital in La Jolla. Her pain had become intolerable. She had developed a urinary tract infection and her sodium and calcium levels were dramatically off, among other issues. The Dr. treating her said that it is a vicious cycle of pain and nausea. Hopefully, once the infection is addressed, she will stabilize. She will remain in the hospital until that occurs. In the meantime , we ask that you continue your prayers as her pain remains overwhelming. God Bless You all and thank you so very much for posting your comments.
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